Smiles, Butterflies and Happiness

Emerging from the shadows....

2010-05-10T07:21:00.002+12:00

I am determined to get back in the saddle and write more regular posts on this blog... I always intended this to be my thinking space (so does this mean I haven't been thinking for the last few months? possibly...)

I have been pre-occupied with many things lately, starting clinical rotations... moving house... missing so many people... health 'stuff'

But just now I am on a high... finishing your first clinical rotation with such a good result can do that :) and if I can help it this new found feeling is going to stay with me for the remainder of the year!

Over the last 6 weeks I was taught how to have confidence in myself! I'm still in the early stages of this learning curve but my supervisors have started me off with a bit more self belief and it makes a big difference. I just need to find out how to nurture it and make it grow because I still have a ways to go.

Right now I am only looking forward, life feels so sweet just now and I hope I can keep hold of this feeling... I CAN do this, I just proved it by doing so well. I AM going to be graduating in December with my class I can almost taste it... no more me saying IF I graduate. I passed musculoskeletal (the area I find the hardest) so nothing is going to stop me continuing to do well in all the other placements... I just have to continue to believe in myself!

Where I've been...

2010-01-29T15:55:00.003+13:00

Its been a long month... and a lot has happened which I probably meant to keep updated on here but I'm sure you will forgive me :) the real world takes up so much time and energy that its hard to find the time to fit in all my cyber wantings.

So what have I been up to? Thats a good question.. and to save you reading a novel I shall bullet point the past 4 weekish.
*Studying for my pathology special exam (this took up several weeks with trying to study and not getting very far)
*Traveling back down to Dunedin in order to sit this special exam (6 hour bus ride)
*Missing the exam
*Sitting the exam (since it was miss-communication between two departments that caused me to miss it in the first place... I was a very stressed girl at one point)
*Traveling back home again (another 6 hour bus ride)
*Finding out I passed the exam (a big PHEW)
*Starting 4th year!!!!
*Surviving the very tough first professional study week (full time schedule)

Which brings me to now... its Friday afternoon and I have made it to the end of the first week with only one hitch (that included being kept late over lunch time for a lecture that was running late which stuffed my tummy up and caused me to miss the last lecture and be rather sick the rest of the day).

A few other things have happened... I've finally got the beginnings of a new GP who I'm hoping is going to investigate the nausea/vomiting issue in more detail and see if there is something we can do to at least make me feel more comfortable. I've been trialling Zofran which has been great... only down side is for the moment I can only get a total of 6 tablets a month rather than the 60 that would be useful.
Due to increasingly worse nausea and vomiting issues I have cut down on my regular medications (as I cant physically keep them down when I try and take them) and so far I think I am coping relatively well on the pain front.
My physio thinks I am doing pretty darn well as far as coping too but is not ready to wave goodbye any time soon... she wants to keep a close eye and is available at any time should I need some advice.
I've turned a corner with the non eating issue, now I'm really making an effort to eat despite how I'm feeling whereas before I wasn't really forcing myself... the dietitian is much happier I think because of this, just waiting to see if I actually start to gain any weight. Its been pretty tough this last month and I'm not sure despite my trying hard I will have made any headway.

As far as crps is concerned... I am hoping that it doesnt show its ugly face too much this year. I had a long talk with the clinical coordinator in my centre and she is very down to earth and not going to make me feel like I need to prove myself like I felt other years. She said that time off if I'm sick and need to go home is a non issue unless it becomes like every week (something I am not anticipating). She is just going to treat me like everyone else YAY!!! The only thing she has concerns about is my history of falling... and yes she is allowed to be concerned I suppose. I mean you cant have a balance challenged physio walking a balance challenged patient and even I can see that... I'm just hoping that my recent history (ie no major falls since August when I broke my wrist) is a positive step and a continuing trend. Lets just see how things go but right now I think MY major concern is the extreme fatigue I am feeling due to just being out learning all day...something I need to adjust to and then we'll be away laughing-heres hoping anyway!

So thats where I've been... and where I'm at... the beginning of a scary, rewarding final year (all going well) before I am let loose on the world!

A New Year brings.... Gratitude

2010-01-01T16:28:00.004+13:00

"Develop an attitude of gratitude, and give thanks for everything that happens to you, knowing that every step forward is a step toward achieving something bigger and better than your current situation." Brian Tracy

Could this be put better? Or come at a better time... a time when people often reflect on the passing of the old year and make resolutions for the new.

I'm not that keen on making New Year resolutions anymore, experience has taught me something... every day should have some kind of affirmation, some goal to work towards, something to strive for... and I find that one simple goal is more achievable than high hopes that are dashed within a week or lost in among the life changing events that so often occur when you least expect.

For me laying here right now, I simply say:

"Thank you God for giving me the strength, the support, the hope, the love, the friendship and the determination to get through the past year... and please continue to give me all these things to help me make it through the next. I place my trust in you, I will never give up hope and I will be faithful to you... when I falter please give me the grace to stand up and continue on my journey knowing you are always there."

But in saying that, I also hope that 2010 will be full of great things for so many... for my friends, for my family, and you all here who read my inconsistent rambles... you all share in a part of my journey, have touched me in some way and for this I say thank you.

Go forth and let this year be a year of miracles, hope, achievement... and as always-gratitude reminding ourselves that progress is progress no matter how small or insignificant it may seem.

So HAPPY NEW YEAR, MAY 2010 BE A HAPPY YEAR, A HEALTHY YEAR, a year full of joy and hope, a year full of accomplishments and may we all fulful God's promises for us and take on the challanges He has in store for us with faith and courage.

Happy new year! Happy 2010, a new decade to strive for good health and personal growth...

Was it really 4 years?

2009-12-03T08:12:00.005+13:00

We had a little chat after an event last Saturday with a lady I haven't seen much (due to being away for uni)...and she asked me how long I had been away...4 years...so much has happened in those years its scary looking back at them!

So she turns round and exclaims to my Mum "did you know she's been away for 4 years?" to which my Mum replied "yes...and I know she's back cos my life is busier when she's around...dr's visits, physio appointments, surgeries, specialist appointments...." oops... sorry Mum.

But yes my poor Mother turns into a bit of a driver for many of these appointments as I cant take myself a lot of the time. Firstly I can't drive (yet...I'm working on this ok...in my head at least, but I do use alternative transport when I can), and quite often I need her as an extra set of ears because I forget so much. Being 24 and living with a chronic health condition changes what we classify as 'normal'...for me a meds schedule is normal, ongoing physio is normal, regular dr visits are normal, needing to rest during the day can be normal, struggling to stand up at the end of the day is normal, being unemployed is normal...and the list goes on...

None of these things were part of my 'normal' life 4 years ago, in fact I hardly spent much time sleeping and I worked my ass off to save money while studying full time, as well as having plenty of social activities I kept myself active with...and I didn't need to rely on my Mum to take me places much (I didn't drive back then either but I'd walk, cycle or bus most places).

Change, that is the one constant in life and sometimes it changes dramatically in ways you never thought would happen to you. When S said to my Mum "did you know she's been away for 4 years?" I starting thing wow...what a load has happened in that 4 years, my life completely changed...and you look back and think what a blessing it was to not know what was going to happen cos if I had known, I'm not sure I would have been game to carry on like I have....which brings me to my next point...

I passed second semester (yes that was a pass...), I've known this for a few days but its not been the climatic relief and didn't bring on the celebration bells quite as much as it has for a few other people in my year. Well, because I still can't say I passed 3rd year which is what all my friends are doing...I still have to sit that component I missed back in May...but now I have the date for that, 18th of January I get to go down and sit my pathology component and once that is done and graded I will be able to say I passed 3rd year. But until then I just am pretty sure I will pass it. But I dont KNOW it, and thats the difference, I dont want to jinx myself by saying I passed when I havent technically yet...pathology isn't too difficult though (providing I actually get down to studying and revising) so I'm going to pass.
But can you believe...I'm actually going to head into 4th year with the majority of my 1st year class...I have made it this far without lagging behind or failing anything..despite health issues, hospital admissions, too many accidents to count, and despite a number of people's disbelief that I could...hmm...now the test will be to make it through 4th year unscathed and my ultimate dream at the moment is to graduate beside all my friends knowing I kept up all the way through...now wouldn't that be something...so watch this space around this time next year...fingers crossed you see graduation photos!

Looking back...

2009-11-22T18:09:00.002+13:00

Hip surgery 3 years on...

Its hard to believe it was 3 years ago today I had my surgery, 3 years is not that long but seems like forever when I think about what has taken place since. And now my open hip surgery for labral pathology and FAI has now become an arthroscopic procedure that my surgeon performs (and Jess knows that only too well lol).

I can still remember waking up early that morning and eating fruit salad for breakfast before my NPO status started, still remember the butterfly feeling being driven to the hospital and all the nurses questions and conversation and everything, still remember my relief when my surgeon assured me I wouldnt need a catheter (though this turn out to be false hope lol)...I think the whole thing made quite an impression on me-it was after all my first ever surgery and was a big deal.
Back then I had goals that included things as simple as being able to tie my own shoe laces again and cut my toenails myself, and slighter harder ones that included being able to walk and then finally run. I celebrated the day I could put my socks on, shoes on, tie my laces, paint my toenails, walk without any crutches (finally), dance, ride my bicycle and a whole heap of other things too but one thing I have never really got on board is the running thing-and for a while now I've kinda thought of it as not important anymore. CRPS has kinda changed priorities in that regard.

But 3 years on, my hip is pretty damn good. It flexes (sometimes past 90 degrees if I work on it...yes yes I know bad bad physio student), it externally rotates to the envy of all in my little ballet class, and its not the body part limiting my walking any more lol. And gasp gasp, in just the last few days I've finally been able to lay on that side without it protesting (but to be truthful I think that is more limited by the crps pain from the incision site).
Its been an interesting teaching tool for my classmates at times due to the limited range and grinding sounds it makes and if the last imaging I had done is anything to go by I'm headed for an early hip replacement. But I dont care lol, at least I'm walking now and apart from the bolts of pain I get from stupid positions... its perfect...

So I think I'm going to say "Happy birthday" born again hip!

When the price for not doing is greater than the price for doing

2009-11-18T13:36:00.003+13:00

I've been working on this post off and on few a few weeks but now have hopefully finished it, I dont think its as good as I wanted it to be but I hope it makes sense despite that...

When the price for not doing is greater than the price for doing...

And that is a force to be reckoned with (and sometimes it needs to be).

What I’m trying to say is sometimes the pain and exhaustion associated with a certain activity or thing is outweighed by the feeling of achievement you get from actually going the extra mile and pushing through. This drive is probably similar to the drive that helps amazing people do amazing things. I’m not talking about the usual situation when you push yourself every day to get out of bed, when just laying there and waiting for the world to go by is the easy way out… I’m talking about when you need something more to give you the incentive to reach harder goals…and this is where price tag logic comes in.

Have you heard of the spoon theory? Heres the link just in case…but sometimes you just say “to hell with spoons, I’m going to do it anyway” this isn’t something to be taken lightly, and isn’t something that is done on a regular basis but its something I am sure most if not all people who experience chronic pain go through at varying points in their lives.

In my head, its something like this:
Getting up in the morning-1 spoon
Going out for lunch with a friend-2 spoons
Proving you can do something you’ve been told is impossible? Priceless…you cant put a spoon value (or any other energy value) on this because the price for not doing it is greater than the price you pay for going ahead and doing what you set out to do.

You will pay in many ways later and sometime dearly, but that price is worth the feeling of ‘normal’/’take that’/yes I CAN still…etc I hope you get the picture...

This is what has got me through 3 years so far of physiotherapy (PT) school…and what will get me through the next year and then whatever comes next and then next… If I was wanting to let pain take over and do the whole woe is me and wanted to sulk and wallow in pain all day, would I push myself? Hell no... would I push myself knowing that I was going to ‘pay’ for it? You bet not! But everything has a price and in the chronic pain game its getting ahead with stubbornness and pigheadedness to just say ‘go to hell’ to pain and do whatever anyway. There is also this kind of desperation to look and act normal whatever the price, the consequences don’t matter, or not until they come and then you deal with them but those memories fade and you still have the ones worthy of remembering.

There are times when this logic comes in with family time, with friend time, with study, with life in general…when you have the opportunity to do something you would have done without thinking BEFORE you became a chronic pain player…only this time you have to think more than twice and roll the dice hoping that doing it anyway isn’t going to push you over the edge. Just because something falls into the priceless category doesn’t mean it doesn’t come at a cost (you just pretend it doesn’t till later), sometimes the cost is so high you set yourself back…sometimes to the point of serious heath issues and yes I have done this-more than once too...and I expect there will be times I make the decision and this will be the outcome again. But would I change the decision I made? Probably not, those kind of memories are worth more than a few days or weeks of messed up life.

I think its important to remember to push for those things that MATTER, push harder than maybe you might ordinarily and be proud of what you achieve because you are showing the true grit and strength that by believing in yourself you are capable of. You are more than pain, and can overpower it (even if what you are achieving may seem small to others...what would they know if they don't walk your in your shoes?)

So love yourself today, take pride in your achievements and think back on the times you overpowered pain and made a PRICELESS memory. Cos I'm proud of you too...

Summer break kinda crept up on me...Surprise

2009-11-18T00:06:00.002+13:00

So after all that I have made it through my exams unscathed...typing saved my bacon so to speak though-without that compromise things would be a different matter entirely. I still don't know if it was enough to gain passes though-again, time will tell. Its weird (well not for me really) not sitting exams with my classmates...in fact when I think about it, over all my years of study, only one final exam have I sat in 'normal' circumstances...every other one has had either extra time, separate quiet room and then this lot a computer to type as well. I'm not ashamed that I needed extra help, just noting a fact because without this extra assistance for my written exams I have a feeling I wouldn't have made it through the way I have (although we are yet to find out if it was enough this round).

I am proud of where I'm sitting (well actually laying if you want the complete truth), I finished 3rd year of my physio degree...I made it through 3 years of tough study and though I faltered at times-I never gave up! Thats an achievement because we went from a class of 112 to 93 between 2nd and 3rd year and its not been easy on anybody.
I've had a bit of time to think recently and although I never got the grades I wanted or had set as goals, I still proved I can do this-even with pain and set backs which I am still soldiering on with. I CAN do this, I CAN push through, I DID show that despite everything I CAN do what the rest of the class can do, and I can do it well. I need to think about that and be proud of what I did achieve even if it doesn't quite match up with what I had set in my head.

I have had a few disappointing things recently, its pretty clear that I now have CRPS in my dominant hand and arm BUT knowledge is power this time round...I dont have such fear associated with symptoms like when I wasn't diagnosed in my leg. This time I knew and wasn't scared (ok I was/am pretty bummed out) of what was/ is happening. But I hate the dark extra hair already, it looks yucky to me lol and I'm not sure about the dropsy symptoms, a few broken glasses already and I cant write-which I have to fix before summer is over.
Also my knee MRI came back fine, which means, yes you guessed it...crps reaction in that too...my whole body seems to be up in revolt and crps is rearing its ugly head everywhere I have hurt by accident which is causing me to reevaluate my actions somewhat. Without noticing so much I have become way more cautious about doing stuff and I dont think thats the answer but for now I'll let it be. A little care wont go amiss.
And finally I got my DEXA scan results back which show generalised mild osteopenia which isn't technically an issue (haha) but requires that I maintain proper calcium intake (umm so yea we are working on that with the dietitian lol) and incorporate weight bearing exercise into my day.

I can just see the (physio torture) um fun I will have this summer...but summer is here and I am back home with all my accumulated belongings (what a heap you can collect up over 4 years) sad about losing some parts of my old life, but excited (and scared) to be starting a new chapter of my life and wondering just what its going to bring.

Check in for more regular updates lol, now I'm on summer break blogging will commence with more frequency :)

Yes...I can do it :) (and other matters)

2009-10-19T20:09:00.003+13:00

One down, three to go...
Practical exam went quite smoothly considering the rough patch I am going through. Not expecting amazing marks or anything but I consider my performance solid enough to warrant a pass-time will tell of course!
I'm getting through study slowly but surely, combining study group sessions with study at home limiting my internet use (it is my weakness and a very good way to procrastinate). And of course I'm looking ahead, reminding myself that this too will pass, the 6th of November isn't that far away and with that will come my last exam for this year. We are getting passed the worrisome inability to write for any length of time but applying for use of a computer, fingers crossed I will hear in the next day or two whether its been granted.

Onto other things, I have an MRI of my knee this Thursday to see whether its miniscal tear or bone bruise or what, I'm hoping it comes up with some diagnosis anyway because just now with the inevitable crps involvement its almost impossible to figure out what is injury related and what is my body's 'normal' response. And "as an aside" (the specialist dr's exact words) I'm having a bone scan on Wednesday morning because of my recent radial fracture, the fact my knee x-ray showed possible bone thinning (and my low bmi also was/is a concern). Like I need to know I have more issues to deal with. I'm just hoping it was the x-ray exposure rather than anything wrong with my bones. But the good thing about all this is its being done private so I dont have to wait, ACC to pay for the MRI, and a drug company is paying for the bone scan-lucky me!
I'm also seeing the hand therapist on Thursday, she has just been to a conference and said she has some good ideas so I'm excited to hear what they might be, I'm working with what I got but any extra ideas are certainly welcome!
All this while continuing to study for exams and continuing to work with my scheduled eating plan. Which I am so happy to say I have finally made a move in the right direction! My weight was 0.9kg more than it was 4 weeks ago and I am sure this is due to the addition of the antinausea/increased gastric motility meds. Less puking (though not completely stopped), and not so much really intense nausea-really helps in the eating department.

So hows that for a lot of good news! Bring on Summer break though I say, I really am exhausted and need some time to rest and recuperate.

I'm not freaking out...I promise!

2009-10-05T11:48:00.000+13:00

Its been awhile since I updated on here, that’s because I’m about to rush head on into finals (2 weeks left of class and then right into them).
Things haven’t been amazing in a few areas to the point I’ve been musing on giving up…I never would I promise! But sometimes the thought that it would be the easiest thing to do crosses my mind.
I am frustrated with how things are going, I’m behind in study but kinda lost motivation at the same time, every thing seemed just way too hard. I usually write screeds, that’s how I study and I cant write much at the moment. But I started over the weekend (baby steps) so now I feel like I have a plan and things look more achievable or at least attemptable lol.

My cast came off last Wednesday which caused a little bit of excitement (for the nurses NOT me), the vibrating cutter thing caused so much unexpected pain I passed out. Very embarrassing! But the spin off from this is I have crps in my arm to my shoulder although we are NOT going to let it settle I have promised myself that. I was referred to hand therapy and the lady is lovely and said that if things had been straight forward she would have let me manage my own rehab but since I’ve got symptoms its best we keep an eye on things (I was relieved to hear this). I’ve got colour changes, temp differences, burning, allodynia, and the all too familiar pain BUT as I said, its not going to settle, this is going to go away…
So, its causing more issues than when I had the cast on, clinical placement has been tricky with me being sent home 2 out of 3 days due to looking and feeling like I was going to faint. The funky arm involvement has caused lovely flaring in my legs and the combo has increase the nausea etc. Joy of joys. I’ve emailed my crps physio though in the hopes that she will come up with some ideas that I haven’t thought of. I’ve been mirroring my hand exercises because doing them on their own just flares everything up. And I am asking about best TENS placement and whether it’s a good idea to try.
I need to sleep! The burning and allodynia gets so bad at night I cant find a comfortable position that keeps both legs and arm relatively happy.

I’m finally on some antinausea meds though (and am going to retry also the reflux ones with them) and are starting to make me feel slightly better, not amazing but at least in the right direction. I’ve yet to actually put on some weight and the last weigh in I had continued to go in the wrong direction which I have to admit is now worrying more than just the people around me (it’s actually worrying me, shhhh)

Oh and just to complete things, when I fell and broke my wrist its possible I tore the meniscus in my left knee at the same time so I’m in the process of getting that checked out…x-rays and specialist referrals because its not just pain, its locking and giving way on me several times a day so now I have 2 legs that can shove me on the floor-nice!

When you have to, you find you can...

2009-09-10T10:08:00.003+12:00

I am learning that there really is no such thing as can't.

Its funny analyzing your thought process, thinking through the possible whys and reasons behind your actions and emotions...why did I react like that, why did I say that, why did I decide to do this over the other choices? "Why?" is such an open question and sometimes its scary finding out the truth.

My initial thoughts on coming off tramadol and decreasing gabapentin were almost of panic as much as I am ashamed, its the truth. Why? It was a lot of fear and catastrophizing. In my head all I could think of was my upcoming big exams (feeling I'm going to fail), the pain last year that meant I got put on the tramadol in the first place. And that I had turned the meds into my validation and justify that I have pain. I'm not proud of my thought process in relation to the drugs but at the same time this is real, this is my life and this blog is my place to be real to you. I never felt like I just NEEDED the drugs, and I had no trouble stopping them despite the withdrawal symptoms but I still felt like without them life would just suck in general (and I didnt want that after 9 months of what I felt was reasonable pharmaceutical managemtent).

Do I really need drugs to validate pain? This is a hard question to answer but simple too, NO I dont need drugs to prove I am in pain and really why do I need to prove I am in pain anymore? I should be working towards it becoming just another part of my life like having to arms and needing to wear glassing to see properly. People dont make a big deal about those and I think what I want to work towards is CRPS becoming just like my slight vision impairment, something of no greater importance (I dont want to say it is not important because I think it still is, just as it is a part of my life now but it is no more important than anything else), I dont want to be known because I have pain, rather known because I know how to help people get to the same point I am working towards.

I am now in more pain than I was when I was taking tramadol, but now I have an opportunity to use all the the tools I have been shown or learnt over the last year or so of searching for information and also the little that has been presented to my class.
I had a long email conversation with an amazing lady in Canada who has such an understanding of pain science that I wish that oneday I will understand some things like her. She asked some thoughtful questions and made me really think about my faulty coping mechanisms. And that maybe some of the things I'm doing might not being treating my nervous system in the best way.

The one I let go first of all is being calm, as soon as things happen out of my control I lose control of me and also loose any sense of being cool calm and collected. I need to change the way I react in order to control my physiological and psychological body reactions.

I feel like I have an advantage in a sense; I have access to many resources due to my studies, I am in contact with people who have such a great understanding and who work with people in chronic pain. I am human and I make mistakes but I also have some baseline knowledge so I can see what I'm doing and how it is affecting me physically but more importantly emotionally because afterall, pain has such an emotional component.

In the last few days I have had time to reflect while sitting on the bus (I've turned a negative into a positve :), its about half an hour of time in the morning and then the evening, to think; about either whats going to happen through the day or how I think the day went. It also gives me a chance to day dream, relax and notice that this 'reflective' time is something I have missed out of my day for a long time. I'm consciously telling myself to slow down, to relax, to not worry about exams, to breathe and you know what I think in time this 'mind regulation' will be just as good as drugs (and better because it doesnt include toxins) and that is my goal...

I have proved I can still get out of bed in the morning with less drugs in my system, ok so the first few were harder than I thought, but the point is I did it.

The next step is learning to stay calmer and not get frustrated with my body, I'm going to try the whole 'go with the flow' thing and see, and if my feet say "take those shoes off now" you know what? I think I will listen...

Its one of those days...

2009-09-08T12:09:00.004+12:00

...those days when I feel overwhelmed by everything. But at the same time so ashamed that I feel like this, after so long, so much education, so much knowledge and I still end up at the bottom.

I have cried in frustration, pain and exhaustion (can I blame hormones you think? periods suck...). Where is that magic wand when you need it?

I'm going through withdrawal coming off tramadol, despite coming off it the way I got told but I managed to survive the 6 hour bus trip without succumbing and being tempted to take some. Its funny but at least this is just because of physical dependence (quite different from addiction) and my body has to adjust in its own time. I'm not sleeping, I feel crappy and teary and had the 'jitterbugs' lol. Pain has increased and not only in my crps areas but also in my wrist, abdomen and also my 'fixed' hip (and its just like pre surgery pain). I think this revelation has me slightly gutted because I thought after 2.5 years things were finished with it for now. I know that I still have impingement that wasn't able to be removed and the beginnings of OA and I have been pushing it lately but still. Why did it have to join in now? lol and I still have the gabapentin to decrease yet too, what will that bring?

I asked the dr what are we going to do if coming off the meds doesnt change anything as far as the nausea/puking is concerned (bad on my part because that is just negative thinking), he said we will decide if/when that happens. I just feel like all this is bad timing, why now when I have 6 weeks left and then big exams?

I'm doing ok really, just being human and wishing things happened instantly rather than you having to have patience and wait and hope. If I learn nothing else through this I have to learn patience with myself or I will not get through. Things will get better and for what ever reason I am supposed to be walking this road just now and what I have to focus on is doing my best and showing I will do my part in the getting better thing-not at all easy when it involves things that make you feel worse in the short term but I am persevering.

My Aunt always says that you are never given more to cope with than you can handle, you just have to realise that plans are meant to be broken and not to have unrealistic expectations.

So, today is my 'write-off' day and tommorrow I will start the day with a smile (and breakfast) and hope it goes better than today.

Home on 'break'...

2009-08-28T16:47:00.000+12:00

I got asked the other day if I was home on break or home because of the break lol! Technically I'm home on break but if it hadn't conveniently been a scheduled uni break I may have had to take time off anyway.
The OT has been persistent in reminding that the shaken brain deserves time to heal and that not giving it what it needs now may come back and bite me in the back so to speak.
Also with all the things going on with me recently I was told (rather bluntly) that if I dont take care of myself just now I am going to crash and be back here next year redoing the whole year again. And as my disability support lady said to me I've been through a lot in the last 2 years that to crash and fu*k up in the last 6 weeks of this year is not something she is going to let happen. Ummm so I think I heard that message loud and clear lol.

Wrist is confirmed as a definite fracture, and a total of 6 weeks casted is required-not a happy thought and currently driving me insane. I got a bright pink one cos its girly and I can scare people :) so far though, most people like it!

I cant write, cant cut things with a knife, cant wash, rinse properly or put my hair up. Its just completely awkward, dont get me wrong I'm not complaining but its certainly creating a lot of situations where I have to work out a way to get around the immobilised wrist. Also means I cant ride my scooter to uni so now I have to get up earlier in order to catch a bus into town and am at the mercy of their timetables. Last week I waited over an hour (in the dark sitting on the pavement) for a bus to get me home and still have to walk a couple of blocks before I am truly home. Its just so much more exhausting and I am going to have to do this for at least a month if not more. It also costs a lot more than petrol too, $25/week rather than $5-6/week.

The mirror is coming out daily, its the only thing that helps with the uncomfortable pain that has come with the new cast. At times all I want to do is rip it off!But for now I'm enjoying my week off, catching up on sleep, getting over a bad cold, relaxing, seeing friends and just being lazy...as well as working on my eating plan.

"CRPS won this week"

2009-08-22T18:17:00.005+12:00

That is a quote from a text Jo sent me yesterday...CRPS has certainly had the upper hand this week, but have we given up? I think not!

Poor Jo had a nasty fall on Tuesday afternoon and I am still worried about whether she did some serious damage to her back when she fell on the concrete but I am hoping that it will settle down soon as long as she takes it easy. She didn't have a nice time in ED which is worrying when they do not take someone in pain seriously. Please say a few prayers that she will bounce back to feeling better really soon. I feel bad cos I would like to be able to help her out and make things easier for her but I cant.

Another of our friends (who also has crps) is having a rough time at work and it is not helping the situation. I think by Friday it became too much to handle so a few prayers for her would also be much appreciated. That her work situation settles down soon and that things are made easier to handle for her. Its bad enough the stress of working full time without people having personal vendettas against you.

And as for me, I followed in Jo's footsteps.
I had a fight with a judder bar (speed bump or whatever you call them) on a down hill driveway. It won...
Apparently I looked like I was doing a stunt double or something. I was walking down the driveway to the entrance of the rest home where I was on clinical placement and lost sense of my leg and tripped over the judder bar and fell down the bank thing. Lost consciousness for a minute or so. Apparently I was not keen to go to hospital but the RN who was checking me over decided it was necessary. I spent more than the minimum observation time because I was still pretty out of it 4 hours later so I was told. My dr and nurse were absolutely lovely though, it makes being in hospital so much nicer when you are treated well. I have holes in my very expensive clinical trousers, plenty of bruises and a few scrapes, concussion and apparently fractured the distal styloid process of the radius on my dominant hand.
Now the dr did say that she thought she could see 2 cracks in it so I'm hoping that when I go to my fracture clinic appointment that they will say it was all a mistake and not fractured afterall-I can always hope right?

I got rung up by the Occupational Therapist yesterday, she is concerned because I have concussion symptoms and am not taking time off. I dont have time to just now because I have a presentation to do on Monday etc, but I am going to have to monitor how I'm feeling and might just have to do as I'm told. She made some good points that if I push through things now and dont let my brain heal that I will make things worse and wont be able to do anything and be out of action longer. I am taking it a bit easy this weekend hoping that will be enough...

An exercise in human observation...

2009-08-18T21:07:00.006+12:00

Which involved dressing up first...

Now we are ready for the proper photos...
At the ball...Discussing the interesting display of human behaviour...

What we were thinking of doing part way through the night (Jo regretted her heels) and couldnt get in the door fast enough when we got home lol!

Feet up on the couch...ahh that feels so much better (and then we had trouble getting up again and putting ourselves to bed)

It was fun dressing up and making the effort to go to the ball, but I felt much happier knowing I had Jo to stand beside. We had an interesting evening watching people drink themselves stupid, being kicked out by security for dangerous behaviour.
Frankly drunk people scare me! They are people I know, work with, are friends with but when they are drunk they are positively scary. In your face, hyper and they dont even remember anything afterwards. Why would you pay so much and then drink yourself to the point of nothing.

I was embarrassed actually, this was a large group of future health professionals acting very unprofessionally but that is the student culture at my university. Something I am not a part of.

But apart from that, we danced a little and chatted to people who weren't drinking into oblivion and enjoyed ourselves (I think-did we Jo?) but it was nice to go home afterward and chat in the quiet of Jo's house.
We both suffered the effects the next day (and the next and still...) Jo really overdid it having spent the day of the ball motobiking in a boggy field or two! But to dress up and be girly it was worth it.

Bowling can really shake a girl up

2009-08-13T10:16:00.000+12:00

I went out last night, with a few close friends to go bowling.

Before we started I was shaking so bad I thought my knees would buckle-and this was socialising with close friends! It did get better though and I had lots of fun, we all did as they are highly competitive in a fun way. The highlight of the night was watching the Mum of the evening, jump in the air when she got a strike and subsequently the reaction when she came up beating us all!

I am no good at bowling (I think that was part of my anxiety in the beginning) but mixed in with many gutterballs I did manage a score of 9 once and a few respectable bowls.

It was really nice being part of the group, despite slipping a couple of times due to the slippery shoes and floor but I can handle a few bruises.
What made me feel bad though was how sick I felt when we went to their house for 'coffee' afterwards, I felt so ill and this really makes me conscious that I'm must be a downer, instead of looking like I'm enjoying myself I'm sat in a corner on the floor (because if I do fall I cant fall far) hoping that I dont puke. I wish I would feel better. I have been trying so hard to eat but everytime I eat a little bit more I feel so bad I wonder why I even bothered.
But this is a problem...I tried on my dress for the upcoming ball and discover that what fitted perfectly in February now hangs off me so much that we cant tuck it at all to make it passable. I do have something else that I can wear instead but thats not the point. The point is I now think I understand what everyone is going on about. I am trying-I promise...its just harder than you think and with that comes guilt about whats going on and my lack of understanding as to why and why me?
I went to the dr and he explained that they were having trouble deciding what would be best for me since I am so 'complex' (how I hate that word sometimes), and I dont fit into their little boxes but we have a semi plan, fingers crossed it doesnt fall through like the last 2 plans he had lol.
If only I could control the nausea then this wouldnt be so hard.

When it all feels too hard...

2009-08-02T16:43:00.001+12:00

...its time to step up to the challange.

Things have been really weird lately, in many directions. I just want to start over and try harder but you cant do that in real life. I'm making bad choices and they are having a ripple effect and then all I do is make more bad choices.

I cant be bothered and am lazy apparently, and that really hurt to hear. I dont go out and socialise because I feel so out of place and uncomfortable (and because I'm so tired and in pain by the end of the day)-not because I cant be bothered!
So because this was said to me, I am now proving the statement wrong; I went for 2 walks on the beach this week, to ballet, and to aquafitness class (which includes a walk up and down a hill to the pool) as well as all my scheduled classes and then extra group meet ups. I am not lazy, I'm just scared of socialising and feel really self conscious when I dont have something specific to be doing.

I went to a party the other week, the girl who's birthday it was is really nice and I knew that I wouldn't feel pressured into anything. I almost didnt go at the last minute cos I felt really ill but I'm glad I went-I really enjoyed myself (and may have met a really nice boy so watch this space).

I find it really hard to put myself in positions where I'm not in control of the situation, socialising is not something you can control. I dont know what to talk about, I hate standing up and I dont drink (which is a big part of the student culture here). I dont know how to relax and just want to hide. I think its cos I feel so different and I dont get included in things that much, I feel like people are just putting up with me and I dont like forcing myself on them. I worry too much about other people and what they are thinking. I need a security blanket of some kind or someone to hide behind, I wish I was more outgoing.

But yesterday the girl who's party it was told me I had to go to more, that they were so surprised that I went and really happy I did make the effort. She posted some photos with me in on facebook and I am learning that people really do actually like me. So now I just have to try and loose my inhibitions a bit and make more effort because I resent being told I am just lazy.

There is more stuff going on, uni this semester is even more full on if that is possible and I dont think I have a great handle on exactly what is going on. I'm keeping up with classes but very behind in study, once I get my head around the timetable better I think I will settle into a better routine. But I've already started telling myself I havent done enough and need to really do way more work...I hate being type A

And I'm having a battle with eating...loosing weight I really shouldnt be, and dont seem to be able to snap out of whatever mindset I'm in that is saying its ok cos I'm feeling better this way. I getting through the day better this way why would I want to change? I know why, I'm just chosing not to

Bad choices, my life is full of them right now.

On the outside I'm fine, ever capable, reliable, smiling even (just a little thin)...

On the inside, I dont really know...

My bonny wee lad

2009-07-19T11:09:00.007+12:00

Here are a few pics of my Godson Matthew, he entered the world abruptly while they were on the way to hospital in the middle of the night. Thankfully both Mother and baby were fine. Just before my exams started he was baptised and I am a very proud doting Godmother (now I have two kiddies to spoil). His Dad was in an accident the day after his baptism so things have been a bit tough in their house for a bit but it sounds like daddy is recovering well so fingers crossed he won't have much in the way of lasting impairment.I made his mother promise to take pics of him while I was away on break for 3 weeks because I was going to miss him growing (hopefully will get them from her soon) and he has grown a lot!

They came round the other afternoon when I was home from uni so I got lots of smiles and cuddles until he was fussing to be fed and Mother was required again :)I love babies, and he is a cutie. I cant believe that he is 10 weeks already!

Sydney trip...

2009-07-18T16:53:00.005+12:00

Ok, so a little summary of my trip away. The plane ride over was ok, but I felt it more in the morning as I had to get my bags down 2 flights of stairs, silly me declined the offer of help from a young man. The 8 hour train ride to Armidale was ok too as I didnt have anyone sitting beside me so I was able to rest my legs up for most of the trip.
The first few days I spent in Armidale where my friend is studying, it was the 'restful' part of the trip, we did venture out and went on a heritage tour as well as a shopping trip and she gave me a guided tour of the university. But there was plenty of time for resting up, so much that I even read a whole book (something I haven't done for I dont know how long). She was in charge of all meals so I really didnt have to do much at all!

Then we took the train (another 8 hours and this time no chance of putting my feet up) back to Sydney to spend the rest of my holiday to get a taste of what Sydney has to offer. We were lucky enough to be able to stay in her friends appartment which was really nice.

We did rather a lot in the 4 days we had, maybe a little too much for me but I didnt want to waste the time so I braved it out. We did mammoth amounts of walking and there were a few moments where I just had to sit down and we had to find somewhere with seats. There was no chance of sitting on the pavement because there were just so many people walking everywhere. Each night as we headed back to the appartment for tea I was on my last legs so dinner was always simple and we got in our jamas and watched movies before going to sleep.
The weather was lovely most of the time, much warmer than it had been at home and a couple of days it was even just t-shirt weather.
I did have a lot of fun and we are already plotting places to go and visit (and shops too) which we didnt have time for but have decided we need to be earning and have plenty of money to spend lo (but even without much money this time I managed a fair bit of shopping)l!

Once I got home (thank you Mum for picking me up at the airport in the middle of the night), it took me a bit to get over the over activity of the week away but we pay the price of having fun and it was worth it. Waiting for the heritage tour to start in Armidale

With the Sydney harbour bridge in the background, it was warm enough for short sleeves

One of my much needed sit down breaks and refueling (I had a strawberry blended ice which was yummy!)

Another sunny day having fun on the way to Darling Harbour

Indulging, we had our nails done one morning

Its an update...

2009-07-09T20:26:00.008+12:00

Holiday adventures should be the first post but I haven't got them all written up so instead I've got some dr appointment news to share.
I've been issued with a few things I MUST do (uh things I kinda knew I should be doing but have been a little slack with)
1-Try and take at least one salmon oil capsule a day despite how sick I feel (had been taking 4)
2-Make sure I take magnesium every day (should help the crappy distorting cramp things)
3-use the lignocaine cream twice a day (not the every now and then I have been doing to save it)
4-NO more falls

I got offered another peripheral nerve injection but it didnt do much good last time and I dont know what my hesitation is but I just dont feel 100% so I said no, I even said to them I didnt know why except that it didnt help much last time and they were fine with it but I still felt like I didnt have a good enough reason to say no.

I saw my physio this morning and its always good to see her because we get an hour to really discus things.
One of the first things she asked me was how much weight had I lost! I dont even know as I haven't weighed myself but its not that much I'm sure.
I had another random, extreme, double over in waves of pain, sweat bucket loads and feel like I'm going to pass out episodes a couple of days ago. Dr once again goes through the process of suspecting appendicitis (which I said it wasnt going to be), it was different from last time and several theories were suggested, bloods were done (which showed an elevated white count but later attributed to a cold I had over a week ago) but for now I'm to just monitor how things go.
Physio is pretty sure its all crps related, preceded by bad eating habits and stress. Apparently my stomach and GI tract are reacting to normal stimuli (ie food) and stretch and is so sensitive because I've basically been starving myself (not intenionally) so now I just feel very ill and nauseated all the time. So instead of the usual physio catch up session I had a nutrition lesson. A meal planner has been drawn up and step by step how to build up to eating 6 meals a day and what should be included in each one. I am not looking forward to all the work planning lists of choices but if this is what I have to do to start feeling better then I'm going to try my best. I am going to have to really plan this well so that I know what to buy at the supermarket each week or its not going to work and I need this to work.

We really didnt touch on how things have been going crps wise in other directions because she said the most important thing right now is to get me back on track or else nothing is going to change regardless of what we do. She did make me feel a bit better by saying that I'm doing really well and that because I'm in such a physically demanding course that its helping keep me going. Despite the times like I told her when I really don't want to eve stand up, I do because I have to...I realise even though I felt like I had lost my motivation-if I had, I wouldn't have carried on so I know I'm going back to physio school on Monday and I know I can do this. She also said not to let people make me feel like I have to prove anything, I can do this just as well as anybody and passing all my exams from last semester (apart from the one I have yet to sit) shows that. Another thing for me to keep in mind.

So for now I'm just going to focus on the things I can change, like my eating habits (or lack of) and following the pain specialists instructions more closely because if I dont do my part how can I expect change?

My Mum is an Angel and home is a piece of heaven

2009-06-20T19:06:00.000+12:00

I have the warmest room in the house, my Mum put on the electric blanket to warm my bed for me when I was out the other night and I have had the best 2 nights sleep I have had in a long time.
Nothing is too much trouble, too much work, she cooks really nice dinner for me, takes me out to the shops to get food and snacks I can manage to eat, just being home for 2 and a half days and I'm feeling more relaxed.

Exams are over for now and time will tell how I have done. I don't want to think about them really because I dont feel like I have much hope of doing ok. This will be the closest I have ever felt to actual failure and I'm not even sure I want to know my exam results. Its weird, the longer I continued to feel so ill and the less time I had to study, the less I cared about even sitting any exams, I didnt have the energy. I'm just more frustrated than anything that I wasn't able to put the work I wanted and needed to put into exam prep as I should have and because of that its going to be hard not to be disappointed.

I went to see a dr and he was really lovely, didnt make me feel like it was all about feelings (and if you sort out your emotions everything will disappear...). He ran some more bloods and I will get the results sometime this coming week and he wrote a certificate for my exam impairment application. I'm not expecting that the blood tests will reveal anything but its worth ruling things out just the same.
I contacted the physio who works with my pain specialist and she said that he will be able to help me and that she will be able to help me work on the nausea too, saying it is the result of a 'lowered central threshold'. So I'm thinking thats a bit like the hypersensitivity that comes with crps and that now my body is reacting to other types of normal stimuli the wrong way (I'm expecting to be told its a result of stress). I'm just glad to hear that hopefully once I see them I will be able to get over all this and be back to feeling better becuase I really dont like the thought of carrying on like this for much longer. Mornings are the worst by far and one of my practical exams finished a little pear shaped as I did not make it out the door before I fainted causing yet more havoc. I told the associate dean that I'm not comming back for semester 2 if I'm not feeling better, there is no way I can get through class full time and clinical placement feeling the way I have been. Mum suggested trying ginger to see if it helped the nausea and although it doesnt get rid of it completely, drinking ginger beer and sucking these ginger sweets I found is certainly helping me get through the day much easier and I'm finally able to eat a bit more without fear of puking it up again.

I have almost finished packing yet again, tomorrow afternoon I'm off overseas to Australia for an 8 day holiday visiting a friend who is studying med. I'm so excited that we are both on semester break at the same time so that we are able to be together and have some well earned fun. She has been 'plotting' ever since I booked my flights and I just hope that I dont ruin anything because of how I've been feeling. She is not fazed and says we will just see how things go and plan accordingly. Frequent small meals are on the menu and I know she is someone who will understand if I say I need to sit or slow down at any point. She is going to make a really good dr in a few years time.
So, I wont be online very much if at all in the next week as I'm leaving my laptop behind and looking forward to taking things easy with a good friend, forgetting about uni and hopefully feeling a bit better as well. Just a little bit scared as I will be flying on my own and spending the first night on my own in central Sydney before I catch the 8 hour train to where my friend is living but I'm sure I will be fine :)

If wishes were horses, beggars would ride...

2009-06-15T18:08:00.001+12:00

How I wish that I could stop feeling sick. Nausea sucks...

nausea+random pain+crps pain+exam stress=too much.

I'm being worn down by having to deal with all this, despite the fact I have actively stopped stressing about exams, I know subconsciously I still am. But I have been through exams with crps before and I didn't make myself physically sick so I'm inclined to think that there is more going on.
Also the nausea started over a month ago, way before even the hint of exam pressure was dawning.

I feel worse once I have eaten, which is making life difficult as you cant just stop eating (or at least I cant afford to).

I have figured out that a piece of toast in the morning (minus the bottom crust) and a glass of juice to take my meds, will stay down. Any more and I have trouble stopping it come back up. Lunch time I can eat a few crackers and an apple or a yoghurt if I'm lucky...
Dinner mostly I'm eating almost 2/3rds of what I had been and feel pretty sick but can keep it down if I stay still.
If I try eating any more than that then watch out my stomach will not like it and it wont stay down.
I'm sipping water throughout the day so I'm keeping hydrated.

Last night I had a piece of chocolate cake a bit after dinner and boy did I regret it afterwards but it did taste nice :)

I'm not sleeping due to the tummy pain and nausea, feeling pretty tired due to the lack of sleep, end of semester and probably lack of food.
Starting to get pretty upset with myself because I'm not able to spend the time I know I should be and need to studying. I have to lay curled up a lot because that's the best position to keep from puking and you cant study like that (not when you feel rotten anyway).

I'm starting to notice subtle signs that I'm losing weight, which is something I am very aware I need to stop because I don't have reserves to loose.
A friend suggested I just become anorexic to solve the problem!!!which is terrible advice, there is no way I can afford to even get myself into that way of thinking.

I have a Dr's appointment tomorrow to get a medical certificate to go with my special consideration application and I really hope that this guy will be able to suggest something to help me feel better.
Because its been suggest this is related to crps I don't really know what to think about it. I cant wait for my pain specialist appointment next month to ask him his opinion, because I guess he is my specialist and will hopefully give me some direction on what could be going on. I don't like the thought this actually could be crps, I don't deal well with nausea and if I cant get it under control there is no way I am going to be able to get through the rest of the year with clinical placements etc. I just don't see it possible...crps is hard enough without adding daily nausea to it.

I'm just so tired of no relief and no end in sight, what could possibly be causing all this to be happening?

An RSD guide to getting through exams

2009-06-12T15:22:00.002+12:00

SET REALISTIC GOALS! Before you turned into a chronic pain warrior you may have been able to Ace an exam with your eyes closed, but its different now...SO WHAT!…just being here trying is testimony to your courage and strength (and that C or B is worth so much more than those A’s you used to get, just because of the effort you put into getting them)

Phone a friend to debrief after your exams if you feel that unloading helps your mind calm down.

Don’t run out of any meds (or if you do make sure you have a friend on hand with a stash gathering dust)

Surround yourself with supportive people, find someone you study well with, teaching others what you are learning is a great way to understand something better. But schedule some alone time too.

Take regular breaks…Sometimes taking a break is better than trying to cram more information in, your brain only holds so much, and its probably holding a good amount of pain so that leaves limited space.

Do NOT put yourself down in the middle of an exam because you heard yourself say/do something wrong or silly…so what? Everybody is making those same mistakes and at least you tried!

Its ok to freak out a LITTLE, heck everyone around you is too so its normal, just don’t let it consume you.

Don’t cancel sport/exercise/dance dates to study, having fun releases endorphins, de-stresses and increases blood flow - all more important for your brain than looking at pages of dancing letters for the 1000th time.

Set little rewards between exams, things to look forward to...they are great at helping you stay focused

Now is a good time to practice those meditation and relaxation strategies you know how to use…you could even do with teaching them to a few of your frazzled classmates

Eat PROPERLY, do not skip meals just because you cant waste study time, and drink plenty of WATER

Go to bed and try and get the same number of hours of sleep you would usually get, being extra tired is not going to help your over worked brain function well.

BELIEVE in yourself, you probably know more than you think you do, and stressing about shoulda/coulda’s doesn’t change anything (except waste more precious time)

And be PROUD of your achievements, you dont have it easy so to be standing where you are makes you AMAZING!

Please grant me the strength to get through

2009-06-10T16:34:00.004+12:00

because right now everything is so overwhelming that its taking all I've got to keep myself together.

I have not done enough study to get me through the next week of practical, oral and written exams and I do not feel I deserve to pass.

I have studied and practiced but not as much as I wanted to and certainly not as much as I should have. I am still dealing with this horrible tummy pain and nausea that is affecting almost everything. Dear God I need a miracle...

I've been tagged :)

2009-06-01T19:23:00.002+12:00

This is a bit of a different questionnaire that Alison tagged me with so I thought I would play the game :)

What is your current obsession?

I wouldn't say that I am obsessed with anything as such...but being in control would have to be my 'obsession' I think.

Starbucks or Peets?

I'm not sure what Peet's is either so I say Starbucks. They are pretty expensive so quite a treat but they do make nice hot/iced chocolates (what I order lol).

What's for dinner?

I've just had my dinner, it was mashed potato and this lamb curry dish thing my Uncle made.

What would you eat for your last meal?

A really nice Italian pasta dish and some salad, and then a to die for chocolate cake (how fitting lol).

What was the last thing you bought?

A packet of perky nana's does the count? But the last thing I bought that wasnt food was return flights to Sydney for a week during my semester break.

What are you listening to right now?

Jon Schmidt (probably sounds weird but I love listening to piano pieces)

What is your favourite flavour ice cream?

A really good real chocolate ice cream

What do you think of the person(s) that tagged you?

She is an amazing young woman and I think that she will achieve some amazing things as she grows up!

If you could go anywhere in the World for the next hour, where would you go?

I would love to go and meet one of my overseas RSD friends, but it would be really hard to choose who to go visit...

Which language do you want to learn?

Sign language, I have been wanting to learn this for absolutely ages but have to wait till after I finish my degree because I dont have the time just now.

What is your favourite quote right now?

"Spread your wings and fly...nothing is impossible!"

What is your favourite piece of clothing in your own wardrobe?

I think is the amazing blue dress hiding in a bag in my wardrobe, its sky blue and has flowers and butterflies on it in beadwork, its such a pretty grown up dress and I am saving it for my graduation dinner to wear it is so special.

What is your dream job?

I want to be a Physiotherapist (Physical therapist) who works in pain management and helps others who are in the same position I have been in. I am getting closer to reaching my goal, a year and a half to go.

What is your worst habit?

I am too scared to speak my mind and instead I just sit quiet and dont say anything. There are many times I would like to just say how I'm feeling but I dont want to create a scene.

If you had £100, what would you spend it on right now?

I would keep it for my holidays that are coming up really soon, I would spend it in Sydney on some nice clothes and things to spoil myself a bit.

Do you admire anyones style?

I always liked Liv Tyler, she seemed to have depth unlike a lot of celebrities around. But I dont really follow the stars. I admire my best friend very much, she has so much confidence and because of that is exploring the world and having so much fun (I wish I was with her so we could do it together)

Describe your style?

I am pretty girly but am really lazy and mostly go around in trackpants and comfy tops and sneakers. I need comfy and sensible clothes because of what I am studying at uni.

What are you going to do after this?

Study!!!! Exams are so so close!

What are your favourite movies?

Well of course there is The Sound of Music :) and I love Finding Neverland too.

What is your favourite fruit?

Summer fruits, too many to name

What inspires you?

The people close to me who battle on showing so much courage, they inspire me to continue fighting on. S a physio at the school I study at, he reminds me why I'm doing this and that nothing can stop me achieving my goal.

Your favourite book?

I love proper childrens classics, L M Alcot (The little woman 4 books), C S Lewis (Narnia chronicles), L M Montgomery (Anne of Green Gables series)...you get the picture, I'm a romantic and have a vivid imagination so these types of stories make full use of it. I dont read much anymore due to my head injury and the rsd effects.

Do you collect something?

Pretty things lol, I have a coin collection and also stamps among other random things like the minature Winnie the Pooh play sets that were around a while back.

What is your favourite smell?

Just after it has rained, the air smells so clean and lovely.

What are you most proud of?

I guess I am proud of what I have got through and the fact I am still in the physio school program. Things have been tough but I am still here doing my best.

What are five beauty products you couldn't live without?

Beauty products are not really my thing but I make sure I wear my bronzing powder when on placement, otherwise I look pretty ill and I dont like being asked whether I'm ok all the time.

Cats or dogs?

Cats

A cosy night in or a night on the town?

A cosy night in :)

I'm not into tagging people so if you want to play along feel free!
here are the rules:
1. respond and rework; answer the question on your blog, replace one question that you dislike with a question of your invention, add more one question of your own.
2. tag eight other people

"Why are you trying so hard to fit in when you are born to stand out?"

2009-05-29T22:36:00.003+12:00

I was semi watching a film on TV (my concentration span is fairly minimal...) and heard that quote. I really felt like it was saying something to me and I love it.

I am not pretty, or funny, or outgoing, or popular. I am not a lot of things but one thing I seem to be really good at is not being able to fit in. Its not easy being different for whatever reason (family upbringing, religion, disability etc) and I've spent my life wishing I could just fit in like everybody else. I hated being teased and picked on, being left out of games, not being accepted because I was different, and my self esteem was shattered. So I have spent my life striving to fit in, try and do what everyone else is, and fade into the background. I hated wearing different clothes, the rules my parents had, the responsibilities I had at home, you name it, if it made me different to others then I did not like it.

But no matter how hard I try to 'fit' in, I still end up being different. Having RSD has stopped me from ever being that normal person. I was trying so hard to play this year right, I ended up informing the school and keeping them updated and now I have this weird illness drag out (which has been hypothesized as rsd related), mess up my ability to just study and prepare for exams and sit them the way everybody else will be. Already I have been told to fill out special consideration for all my upcoming exams, something I was really hoping to get through this year without having to do. I wanted to prove that I could do things just the same way as everybody else and yet again I feel like I am so far behind and the only thing lef to do is claim impairment (which has been explained to me is warranted despite me thinking otherwise).

But maybe I am just not supposed to be that person who 'fits' in, and maybe, just maybe I should embrase being different and find confidence in who I am as a person and stop trying to be like everyone else.
From today I am going to make that quote my thought to remember. The thing I tell myself when I am too scared to speak up, too scared to have an opinion, too scared to stand out and be different.

Its not the people just like everyone else who gets remembered...its the ones who stand out, the ones who are different..they are the ones who get remembered.

Umm, yes I do know I'm just a bit special...

2009-05-28T23:40:00.004+12:00

I'm talking to my Mum on the phone and its getting late. I need to find out what the time is so I look for my cellphone (its my clock...). Its not on my bed, its not beside me on the table where I usually put it, I shift my laptop to see if its under it, I shift the notes on my bed to see if the phone is under them. I get up off my bed to see if I was sitting on it or if it got under the duvet. I'm frantically looking on the floor and everywhere for it because I rely on my cellphone for a lot of things, and I still cant find it anywhere. My Mum tells me the time (I'm still on the phone to her) and I look in the mirror...

I'M TALKING TO MY MUM ON MY CELLPHONE

She laughs and says she thought I was on it.

How crazy is that? Seriously, my brain is not working well at all

She's on my side

2009-05-27T22:12:00.001+12:00

I have an ally and it feels so good knowing she is on my side. The associate dean actually said that she knew I had what it takes to do this, but my body was being difficult just now.
She was really nice and understanding...I felt so bad that I was presenting with yet another problem, but as she said, I couldn't do anything about the free fluid and being ill and how it affected me and that it was important to listen to my body and rest if that was what I needed to do. That I cant do any more than I am just now and she realises that and also realises that I dont like the situation so I am doing as much as I can.

She is going to try and sort out the missed terms test but said it is not something that gets resat next year so I'm not sure what will get done about it. Its only finals that get offered as specials at the beginning of the following year. I'm also to fill out special consideration for all my upcoming practicals and exams because of how my preparation and performance will have been affected and she said if I do not pass anything then it should be taken into consideration and not affect terms (rhis round most of them are internals for full year papers, only one is a final exam). I'm hoping that I will scrape through but just now I'm not sure I have a proper handle on anything, fingers crossed thats just a feeling and I'm not as behind as I think.

So thats one meeting down, yet another meeting tomorrow with the disability office to see how they can help me sort out this mess. I'm hoping they have a good plan of attack to help me wade through all the missed classes etc. I'm also hoping that I dont cry...I always end up crying in these meetings and I feel so weak when I do, and that I must look pathetic. I just want to show them I can do this and its hard having to admit to needing help when you pretend to look so normal to the outside world. Its like a double edged sword "I'm fine, I'm fine...but I need help..."

I feel fake

Offer accepted

2009-05-25T20:46:00.002+12:00

Yay for people who can realise when its a good time to take over. I spent quite some time on the presentation last night and this morning, its all set just to have the other's research added and then be referenced accordingly. We got together tonight and I was expecting people to have their contribution all ready to just add but it wasn't that simple. Luckily one of them offered to take over as he could clearly see I was struggling to even talk by that point. He is now collecting the remaining data and will add it to the powerpoint poster ready for us to give it a final look over in the morning and hand in by email. One of the others has now taken over writing the script for the presentation too, he's taken my skeleton idea and sounds like he has great plans for it, its going to be quite fun!

I am still feeling particularly unwell and washed out. During a lecture this afternoon I ended up laying down because I thought I was going to pass out. A friend made sure I made it out afterward and left me resting after convincing me that missing the next tutorial was what I NEEDED to do, and suffering though it (or making a spectacle of myself in it) was unecessary. I rested for the 2 hours and then dazed through the last lecture of the day before our group meeting tonight.

I found out that because I missed the Pathology mid term last week I am most likely going to have to sit special exams beginning of next year but we will see. I have to meet up with the associate dean again now due to my time off and hopefully we can sort out the mess I am in. If I was a bit behind before, now I am so behind I dont want to think about it and semester exams are just around the corner.

I'm going to bed, I am so so tired and its early morning starts every day of the week this semester. I hope others are feeling better than I do just now.

Superhuman I am not...

2009-05-24T18:40:00.004+12:00

...so why do I take on more than my fair share? Why do I continually say I will take care of things when its clear I'm having trouble just being here?

Because I need to be in control, in charge; to make sure things are done to my standard and I'm not up for compromise, I'm pathetic.

Its after 7pm on a Sunday night, I've just taken the whole last week off uni to try and get better (which I don't seem to have achieved), my foot and leg is yelling at me (its pretty high on the pain scale), muscles in my leg are spasming uncontrollably, my thigh is not even liking the lightness of my trouser touching it, my back hurts, my head is pounding I can hardly focus and I'm physically and mentally exhausted... and I'm sitting at uni organizing a poster presentation.

WTF??? how did I let myself?

Yes the other's have contributed, yes they have done their part in this but I took it upon myself to put the whole load together, to spruce up the sample poster, to make it ours and original. I'm also coming up with the 'script' for our presentation to go with the poster. Why can't I trust someone else to organise it? Why couldn't I have given my research to one of the others to put it all together? Why? Because I need to control things and I am a born organiser (I remember being told this in primary school...how good I was as organising and making sure things got done and done well), I have idea's and want things to be the best they can be and I think I can acheive that....but this would have been a good time to decide that passing was good enough, I dont have the energy or the brain power.

I just realised I'm not superhuman...but its too late.

I hate hospital...

2009-05-20T16:44:00.000+12:00

Once again I found myself in hospital over the weekend and through till Monday (not due to a fall this time thank goodness...)

I had awful tummy pain, felt very sick and was very unsteady on my feet. I didnt know what to do, so I rang Jo and she said to ring the healthline and see what they said, they said to go and get checked out. I then rang my Mum to see what she thought I should do (seen as it was Saturday evening). She said to follow the advice I had been given and to go to the ED, so my Uncle kindly took me.

I got a bed instantly which was nice because lying on my side curled up was the least uncomfortable position and I lay there for about 3 hours before being taken to be assessed by a dr. They were pretty busy dealing with drunks creating a scene and I lost count of the number of drunk students who had put their hands through windows! They said thank you to me for waiting so patiently lol.

It was possible I had appendicitis seen as I had most of the positive signs but it could have been several other things too. I got assessed by the surgical registrar and it was decided to admit me and just keep watch over how things progressed before anything drastic happened, (I was not keen on the ides of surgery one bit!). The ED dr did my IV and she was amazing, first time and in a place that wasnt too uncomfortable too!

Sunday I had an ultrasound which showed free fluid in my abdomen and I was told that fitted with my presentation so just to keep with the pain relief and antinausea and see how things went and I was then allowed to try and eat.

I couldn't eat much more than a spoonful of the soup I got but I had been kept hydrated with fluid and was drinking as much as possible. I had a ghastly night not being able to sleep due to hot sweats and my hands and feel swelling up so I couldnt make a fist. Due to the weekend, the hospital pharmacy wasnt open so they didnt have all my medications and due to not having brought them in with me, my med schedule was all messed up. I dont think that helped my pain levels or the side effects I was having.

Monday I was dealing with the pain better by then (you kinda get used to things you know) so I tollerated the surgeon touching my tummy better although it was still pretty painful and straight after I puked up the limited contents of my stomach. And they decided that seen as things hadn't progressed any further, no surgery was required just now (phew) and I could go home (double phew!).

When the house surgeon came to talk to me about discharge rx and I said I needed pretty good antinausea meds cos they had been giving me a double combo to try and control things he almost changed his mind and made me stay. Thank goodness I was able to talk him into letting me go home. I knew I had no chance of getting better in hospital, I couldnt even stay still due to the pain, no sleep, heat and med mess up. I'm just to go back in should the pain get really bad again I (fingers crossed it doesnt cos I didnt deal well with the added pain and nausea).

I've been given the week off classes to recover as they said I would need the week. Initially I thought I would bounce back but I'm finding out just how washed out I am and think I will need that week. Bad news is I had a terms test tonight worth 35% that I am missing and I dont want to think what a mess that is going to turn into but just now I dont care.

I do have to say though that despite the amount of pain meds I am currently on, they still gave me morphine for the pain and didn't treat me badly like I dreaded. I have heard horror stories of people with RSD going to hospital and being treated like drug seakers etc.
The surgical registrar on Monday did sound pretty surprised at how much pain I must be in when he saw what drugs I'm on but I think it was because he hadn't come across it before and he was still nice about it. The consultant wanted to know a bit about what was affected by RSD but he was also nice (we think he looked after a friend who also has RSD when she had trouble recently). So overall I had pretty reasonable treatment appart from the pharmacy thing.

The thing that was most difficult to deal with (appart from the heat the hospital always seems to be) was the number of visitors the girl next to me had! she would have 3 girls all come in at once and they made so much noise, I felt pretty lousy so that gave me such a headache cos I couldnt get away from it. And they kept coming, as soon as one lot left another lot arrived-I started to wonder just how sick that girl really was (was that bad of me?). Anyways I am home now, eating in small amounts to try and get my system used to food again and resting a lot. I am so wiped out and drained. Just walking to the bathroom and I am shaking which is pretty embarrassing! But I'm starting to feel better, which is good, just taking it slowly.

Thing is though, I never thought to ask how I got free fluid in my abdomen and what it would be...obviously it wasn't supposed to be there so I wonder how it got there and whether its something I should be conscious of and if it happens again does that mean anything?

Part 3- Love is...

2009-05-10T18:00:00.004+12:00

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It is not rude, it is not self-seeking, it is not easily angered,
It keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
1 Corinthians 13:1

How I love that passage, it is such a simple verse but very powerful.
I think today is a fitting day to ramble about this word and what it encompasses. It is more than just meaning, it is a word that has such depth and such strong emotion because without it there is nothing.

Mother's day is all about love, without love this day would be lacking, because it is a Mother's love that is so strong as to lift the hearts of all even when one is close to despair. She nurtures love in her children, teaching them the simple ways of love and by her actions shows the sacrifice that love has to make at times. Love is not always easy, it is not always noticed but when it is true, love is everything.

I feel loved...
...my friends and my family wrap a thick coat of love around, me and it is this shield that protects me from mortal danger when I fall, their love is keeping me alive. When all else fails, love stays strong, love conquers all. I am nothing without love. Love is seen in people's actions, is heard in their softly spoken words, is felt in their all-enveloping embrace and comforts you so....your heart can relax, calmed by the knowledge that you are safe in the arms of someone who loves you.

It never ceases to amaze me just how much love people can show, and how many people their love can be shared with. I think that the more love you show, the more love you will have to share and the more you will be loved in return-its an everlasting circle.

Take time to share your love, say those 3 words to the people who matter to you...they may be simple but when said with meaning, they move mountains.

Mum, I LOVE YOU.

and all you people around the world who show me such love....I LOVE YOU TOO!

Water is for drinking, not breathing

2009-05-07T23:13:00.002+12:00

My abs and all my accessory inspiration muscles ache so much now due to how hard I had to try and breathe after trying to 'breathe' my water.

Our tutor is really funny, in between being maddening and getting WAY off track in class. But it doesn't pay to take a mouthful when he is cracking jokes-I learnt that the hard way today.

And the worst thing was I couldn't really tell people what was going on cos everything I tried to talk I felt so dizzy I thought I was going to pass out. I had to take really tiny gasps of air or else everything seemed to close completely and I couldnt breathe at all.

I'm fine now though, just took a while for my breathing to get back to normal. I think I may have actually got some water in my lungs and that triggered my epiglottis to close in reflex or something. I certainly dont want to do that again anytime soon though it wasn't fun at all.

Spread the Word!!!!

2009-05-01T22:08:00.001+12:00

Part 2 Give me Strength

2009-04-27T21:09:00.003+12:00

But they who wait for the LORD shall renew their strength; They shall mount up with wings like eagles; They shall run and not be weary; They shall walk and not faint. Isaiah 40:28-31

Strength is not how hard you try, but not giving up in the face of adversity...

Strength is what makes up pick ourselves up and carry on despite...

Strength is what lets you forgive someone when they did something that really hurt you...

Strength is what makes you take that leap when you are scared and not sure of what you are getting into...

Every time we face a new fear it makes us stronger...and teaches us more about ourselves too.

It takes strength to get up in the morning, strength to carry on when the going gets tough, strength to be you and not try and be something you aren't.

Strength is not just about how heavy you can lift or how long you can hold, but how you battle on each and every day, how you survive to make it to the next.

And I'll leave you with this quote which sums it up quite nicely I think (sorry I'm not sure who wrote it):

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Part 1 Have a little faith in me

2009-04-25T21:12:00.006+12:00

As promised...Jo's 'Labour of love' and a reflection to go with each one. There are 5 in total that I will ramble about over the next wee while. These mean a lot to me and I know that each time I set eyes on them I will be reminded of her friendship and also of who I am, in her eyes at least.

"If you have faith as small as a mustard seed, you can say this to a Mulberry tree, 'be uprooted and planted in the sea' and it will obey you" Luke 17:6

Reminds me of that song by John Hiatt just now and I think we need to remember to have some faith in ourselves too (or at least I do).

Faith defines so much of who we are and I'm not just talking about religious faith, although that does come into being for a lot of people (including me).

Faith is being confident, trusting in something, someone. Faith is knowing, faith is believing...

Faith is what we need to hold on to, despite the world crumbing around us, despite everything we know or understand disappearing.

Faith is something dear to hold in your heart, something you know without knowing if that makes sense.

Our faith needs to be strong, to help us to see in the dark. When we need a hand to hold onto, faith reaches out.

Faith is the seed in our soul that grows into beautiful things, fills our eyes with brightness and hopefully never falters.

Faith makes all things possible, faith has no limits...

Share in my faith and shine with overflowing goodness. Stand tall and have faith in who you are, believe in yourself, each and everyone of you...as you help keep my faith strong and together we will move mountains.

Say it like it is...

2009-04-23T07:31:00.002+12:00

"XXX and I would like to catch-up with you to see where things are standing at the moment."
"If you would like to, you are welcome to bring a support person. We just want to make sure that strategies are in place to get you through the year, whilst keeping yourself and your patients in the clinical setting safe."

Oh crap...I thought I had been spared this and truly this year has been going much better than last-or so I thought.

Being summoned to a meeting with these two people (associate dean and undergrad dean) is not to be taken lightly and as I thought I had sorted out the mishap that happened just before Easter, I wasn't expecting it (though I was hiding).

Jo came with me (thank you a million times) and it was because of her presence that the meeting actually had a positive outcome (and we both agree it was a pretty intense meeting). I am so afraid of them deciding I am too much of a liability that I haven't been able to tell them the whole truth. I think at the beginning of the year I just said I had crps but didn't even explain how it affected me.

Jo 'laid it on the table' how it affects me on a day to day basis, how its unpredictable, how its physically draining but also that I can recognise when I'm not at my best.

One of their biggest concerns is safety and potential threats to safety; patients, staff members, other students and mine. I have been known to fall, to faint and apparently other students have had concerns about leaving me on occasions. Staff are watching me very closely in classes. I totally understand and I know what a big responsibility the school has in this respect...I just think that its so unfair that crps is doing this to me, creating this problem.

They wanted my permission to inform staff who would be in close contact with me and then it was decided I should put what I wanted them to say on paper which is fair enough. It was suggested something like "X has a health condition and it can affect her in XYZ way."

I got home and started thinking...I am sick of hiding, sick of pretending, and up until now have been a bit scared to say things to tutors etc about how I'm feeling or where I'm struggling. I dont want to do this anymore and its much better that people know in the beginning so they can help. According to them, as everyone who teaches is a health professional themselves they should be able to understand (I really hope so) so by being informed it should potentially make life easier all round.
I thought, IF people need to know anything, then they are going to know the TRUTH...not just a tiny part of it. So I wrote a letter...it has turned into a page, but thats not much really. I am going to give it to the Associate Dean this morning and explain that I want people to know the truth. So, anybody who she deems it necessary to inform, they are to receive this letter from me. Hopefully I can feel more comfortable going to them and asking for help or saying that I don't feel so good and it will stop me pushing myself to the limits as I have been up until now.

I'm not certain whether they are going to be ok with this but I hope they are...its how I want it done if its to be done at all.

I just hope that its not used against me or creates more problems.

I also recognised for the first time, my attitude towards any problems I have is not the right one, something happens or I find something difficult and instead of looking at it practically and thinking about how it could be made easier...I tell myself its my problem and just deal with it. Now that they have specifically asked me what they can do to help I have started thinking of practical things they could actually do to help me and if they really do want to help (and I think we both agreed they do seem to want to) it will make life so much easier!

Oh, and heres the letter I wrote...

To whom it may concern:

You are getting this letter because you will be teaching me on some level this year and I would like you to know a bit about me in order to make the year flow more smoothly for everyone concerned.

I have Complex Regional Pain Syndrome (CRPS, formally known as Reflex sympathetic dystrophy) which I am hoping you will know a little bit about. I have constant pain, allodynia, hyperalgesia, burning and freezing cold pain as well as muscle cramping, stabbing pain, colour changes and abnormal nail and hair growth.

I currently have these symptoms in my right foot, leg and thigh, with mirroring symptoms showing in my left foot and ankle. This is making some everyday activities a challenge for me. It can affect my ability to stand still or walk for long distances, concentrate for long periods of time and think quickly. I find long classes and hours with no break tiring and not easy. Sometimes I feel nauseated due to the pain and fatigued due to the chronic lack of sleep as CRPS also affects the limbic system, causing sleep and short term memory problems. I do not tolerate heat very well and this can cause me to feel very hot and feel faint.

I am on a combination of drugs to help with the pain but these also have side effects including concentration and memory problems and I tend to loose my voice due to having a dry mouth (so I am always having to sip water). I have good days and not so good days although am unable to predict when these may occur, but I have learnt how to recognise the signs that mean I am not so good and when I need to take extra special care.

Despite all this, I really want to make it through to graduating as a physiotherapist. I do work hard and am putting a lot of effort into showing I can do this and I believe it is still an achievable goal for me. With the support I need and that the school is offering me, I think that I am still capable and that I will be able to show I can meet the competencies required.

I know how important patient safety and other’s safety is and the responsibility the school has in relation to this, so it is important that everyone who is in charge of me knows my background in order to offer any support I may need. I don’t want special treatment and I am scared about how this is going to affect the way I am treated in regards to ability, but I do understand I have a health condition that requires people to know about it. And because you are informed I will feel more comfortable asking for help or letting you know if I am feeling unwell.

Yours truly,

Spreading like wild fire...

2009-04-11T21:09:00.034+12:00

I seem to remember that bush fires 'jump' from one side of a road to the other and carry on destroying everything in their path...I think I am discovering that crps is just like that (jumps from one limb to the other).

Lets just say I think I am experiencing a mirror type spread. My once fondly called good Left foot seems to have decided it felt left out and is joining in on the game of crps.
Burning hot pain, allodynia, exact mirroring of the red patches on my feet, and up both legs the bright red stops at exactly the same height, I swear its just like looking in a mirror-even my Mum was impressed (and then asked me whether this was good or bad...). I've also been experiencing my share of pain related nausea, so much so that I have not been able to control it (puking is ghastly, I hate the whole feeling especially when you don't feel relief after).

I say that I'm not happy about this but in reality I'm emotionless, I think I automatically shut off all feeling before I had a chance to think-protection mechanism perhaps?
Anyway, there is no point in being angry or upset or stress about it-that doesn't achieve anything.

It might just be some kind of flare...I might have unsettled things in my latest fall, maybe its because of all the stress I've been subject to recently...I could make up reasons till the cows come home-and that's what I plan on doing for now. Its really too early to say (I'm telling myself, well its only been a couple of weeks or so, not long enough to have any idea). I'm sure things will settle down soon and Lefty will decide it doesn't like copying Righty after all and go back to being normal...I'm sure that's the case...

...but lets just say, umm, well I don't quite like it and am trying very hard not to think about the possibilities.

But just now I am pretty gutted that I can't see either my pain specialist or my crps physio, neither of them are seeing patients my ONE week back home for uni break.

Nothing like a good kidnapping to set the world to rights...

2009-04-06T17:58:00.041+12:00

First of all I want to say, last week was a particularly hard week but that happens, and its going to continue to happen because that's how life goes. I just hope that with practice I get through them a bit better than the last one went. Thank you all so much for the support you show and continue to show me. Knowing I have people near and far who care about how I am going brings a smile to my face, and well, what is life without smiles and friends?

Come Friday I was about done with trying, frankly I was pretty tired and frustrated with myself, somehow being 'needy' was unacceptable. I went to see my student adviser K and she really helped me sort out a few things that had really been messing with my head. Once again I feel justified about needing help and think I can start asking for it again. I also semi believe that I am a 'coper', I was really worried that she would think I was not seen as I pretty much end up in tears every time we meet up.
A surprise was waiting for me after my appointment (actually I think it tickled a few innocent observers lol), I was 'kidnapped' by a person kind enough to send me several messages when she thought she may have missed me (but no, I spent longer with K than expected, but that was because I really needed to talk) anyways meeting me in reception was Jo who quickly hurried me off to catch the bus, and thoughtful kidnapper that she is, even paid for my bus fare. We took the bus to her hideout and I got to relax for a whole afternoon.
Those hours in the sun, away from the stresses of uni, home, everything reminded me how to relax again...something I have been needing to do for a while I think.

That wasn't all the kidnapping involved...lunch at some point, photo journeys and a pretty huge surprise in the way of a belated birthday gift too. One so special that it will involve a few posts all of its own over the next week or two (I forewarned you) as I have a bit to say about them.

The world is now a brighter place once again (and being locked out of the house for over an hour Friday night didn't dampen my happiness either).

Jo
You are amazing, a wonderful friend, around you I feel safe, I feel like my load is lightened and I know I don't have to play pretend. You are like the big sister I never had, just being with you and knowing you are never too far away makes me not feel so alone. You make me stronger and a simple hug from you scares away the fear that sometimes threatens to overwhelm me. You never have expectations, we don't even have to talk but just being in your presence creates a certain calmness that is hard to describe.
I thank God so much for sharing you with me, I know that your life is pretty tough on so many levels and the fact you can still share yourself with me, the way that you do, well there are no words that describe just how much you mean to me.
May God be with you
All my love
Butterfly

DO NOT ask me how I am

2009-03-31T19:13:00.002+13:00

I ~~may just~~ will cry. Heck even if you just look at me my eyes may well up. You can asked me if I slept at all last night(it looks that bad? yes it looks that bad...), just dont sound like you care and I should be ok.

There is this horrible tension where I'm living, making life pretty miserable. I tend to hide in my room and I hate coming home now because I never know if its ok to say hi or whether I should say nothing. I dont know if she means to be like that, its just how it feels and I tend to be pretty sensitive to whats in the air.

Put that on top of a physio induced flare and chronic lack of sleep and its turned into a recipe for emotional breakdown. I just want to go home and cant wait till Easter when I get to go home for 9 days, it will be so nice to be looked after by my Mum for a week.

What a day

2009-03-26T23:20:00.002+13:00

6.45am Awake
Work on assignment
Get up (yes, I have it so I dont actually have to get out of bed to study in the morning-is that bad?)
Shower
Breakfast and meds
Make lunch
Hurriedly towel hair because there is neither time to dry it properly nor plait it
Pack lunch...and slightly less heavy backpack (what did I forget?)
Opps, dont forget to brush teeth....dash out the door

Ride to Uni and arrive with 10 min to make the 10 min walk to my lecture (no fake running this morning)

Lecture
Library to work some more on said assignment
and more
and more...
Stop for lunch
Walk to centre to find friends to eat lunch with (and discover certain person is sitting with them hence I cannot)
Eat lunch by self
Walk to supermarket number one to buy muffin cases
Walk to supermarket number two to buy muffin cases as number one didn't have any
Hurry (and this actually included some attempt to run) back to physio school for lab I was now extremely close to being late for
Lab, which was both boring, interesting and tiring
Back to library to spend yet more time on assignment since lab finished early
Walk to physio school for tutorial
Tutorial...which they tried to make interesting and kinda was but it was too late in the day by that time to do anything else but wish for the end to come
Walk 10 min walk back to scooter in rain with no jacket (no one told me it was going to rain today)
Ride home

Switch on laptop and work some more on assignment
Eat some chocolate and YAY...finish assignment (I can go to ballet afterall)!
Check email
Eat dinner
Get changed and hitch a ride in the rain to ballet
Hitch a ride home
Make blueberry muffins (which take forever to cook in our tiny cooktop oven-I hate standing up)
REALISE I AM IN SO MUCH PAIN COS I MISSED LUNCH AND DINNER MEDS

I wore my TENS all today and was so busy that I didn't notice I had missed them till I stopped to catch my breath.

So now of course I cant sleep (sigh)

Tomorrow is last day at this clinical placement so I really hope I do get some sleep as I will be getting feedback, I also have my brain MRI in the afternoon and trying not to think about it, makes my stomach churn ah well. Aint life just a dream?

I live pretend...

2009-03-20T22:03:00.003+13:00

...and I NEED to feel in control.

I hate it when things become unpredictable, or when people see through the pretend and are nice to me. Somehow its harder to deal with genuine nice than it is to deal with being ignored. I have to pretend so much that I'm not really sure what the real me is or even if there is a real me, I got asked when I made time for 'me'...I hide in my room and there I can be me, you see the real me, the people I reach out to get glimpses of the real me (and then I feel guilty) but I try not to do it too much.

Several things have happened this week:

I got listened to by health professionals, like for real, on several occasions...
I got told to "take care of myself", and when I replied with "I'm not very good at that" she said "that's why I told you"...
I found out that my 'mask' is pretty good, even on half an hours sleep
I admitted that maybe, just maybe I have a few demons locked away that need sorting
I found out how easily I get freaked out when someone takes away my control of a situation
I made a whole room go instantly quiet (I fell off a plinth right on my SI joint but I'm sure its fine)

Its going to be a hard road ahead, one I don't want to take but I know I have to. I am seeing how my reaction to certain situations screams out how I don't feel worthy of others help, I want to help people, but I don't feel like I deserve any help myself. I cant even take compliments and that is so sad, I feel like I am wasting their time or being a bother. I also got told (once again) that I am far too hard on myself, another thing I am trying to work on but its becoming all too clear that I cant do this on my own (my immediate thought on this is how pathetic and weak and crazy that makes me-things I've been told I am not) so help here I come but just treat me gently, I'm fragile underneath all this pretend.

CRPS I hate you.

RANT...My life is a soap opera

2009-03-17T18:54:00.004+13:00

How come people have the right to add to the stress I already live with on a day to day basis?

Its useless trying to make them understand what its like for me, they cant understand as they have no perception of what it takes to get out of bed and make it to an 8am lecture, what it takes to make it to the 5pm end of the day. I know everyone has trouble getting up for 8am but waking up every morning exhausted, in intense pain, half blind and with a pretty visible tremor that takes a good half hour to settle is not normal, well it is for me but I dont think it is for most people.

Add to that physical and emotional stress and you start to falter, start to lose faith in your abilities to cope with the outside world and try to hide even more. I have been told pretty firmly (by 2 different professionals) that I NEED to get my act together and go back to counselling so I know I need to, I just feel like even that is one thing too much at the moment. I know it is going to be hard and I just dont know if I have enough in me to deal with everything around me and cope with that too...why does life seem so darn complicated?

I had my first day at placement where I did not feel I could handle patients, I hadn't slept all night except for half an hour (I messed up my meds and my whole body was burning hot and sweating all night) and feel extremely dizzy and nauseous. I was so disappointed in myself despite the fact I couldnt really do anything about it. Luckily I didn't have my own patients to treat, I was just supposed to be assistant for my classmate so I just asked one of the other girls to help when it came to balance assistance.

I had my midway personal assessment and I feel much more comfortable with the clinical educator after the first week so yesterday morning I basically said that I suffered the same 3 'invisible' symptoms she talked about for MS and that everything was undercontrol as far as the Associate Dean was concerned. I said she could trust me that I wouldn't put anyone in danger but I still felt disappointed, I was hoping to get through the first placement fine. I even had to leave a tutorial half way through to nap for an hour so I could make it to the end of the day. I think I need to figure out a better strategy to help me get through the days when I have no breaks but lunch time, something I think I will got back to my student advisor to talk about.

I wish I could snap my fingers and all my worries would disappear, it sounds so much easier...can I really do this? am I doing the right thing?

Because your're worth it

2009-03-13T22:07:00.003+13:00

If I ever needed reminding why I am putting myself though this, I just have to see a patient. Clinical is so fulfilling, its the easiest and fastest way to forget about my pain and focus on someone else, someone I can actually help in some way (even if like me, their pain is ongoing). I may have freaked out last week and felt way out of my depth, I still have a lot to learn BUT I can do this, I can show I have the skills to interact with patients and do it well even.
I started today absolutely exhausted...I actually had a conversation with one of my tutors going up the stairs about just how fatigued I was. But when the patients came and we got them going, challenged them and shared in their success and endorphins, well I was energised and frankly happy. The truest happiness I guess I have felt in a long time.

And thats not all, at the end of today's clinic, the end of week one of our first placement for this year we got some very sweet sounding feedback and it really made my day. Our clinical educator said she hoped she wouldn't be disappointed by the next group of students because we had set such a high standard! She said how impressed she was with our handling and organisation skills, the confidence we showed and the progress we had made with our patients in just the first week. Such a confidence booster and no I am not getting cocky, far from it...I am so humbled by her comments but at the same time I think I should be kind to myself and actually see that I deserve that praise, I have worked hard this week and I know of many things I need to improve on but I also know I have done well.

Several things really struck me this week...I'm working in an Multiple Sclerosis clinic, its a community based clinic for people who are at various stages of the disease to help them maintain function rather than being a 'rehab' type setting. Our clinical educator stressed three things for us to try and remember when treating our patients, she called them the hidden symptoms of MS: pain (neuropathic in nature), fatigue (different from normal fatigue) and cognitive issues...where have I heard them before?
How being motivated is so hard due to the ongoing nature of the disease I can relate to that...
They can be struggling with identity issues, especially if they are just newly diagnosed (hands up anyone?)

You know its actually pretty scary for me, sometimes I just want to say how I know what the pain is like, tell them that we take the same drugs, understand the fatigue and cognitive problems because I have the same difficulties but that is not my place, I am their therapist, not their support group buddy. I dont really know the rules on this kind of thing but I have a feeling it crosses the professional boundary when I start going along a personal level. Not that I want to blert out to the whole world or anything I just sometimes feel so close to these people (and they are more than just patients to me, they are people) because we share some of the same experiences.

One thing I do need to work out how to deal with is the horrid side effect of my meds, the ghastly dry mouth. I dont feel so comfortable sipping water all the time but I need too, the combination of meds and nervousness makes for double whammy dry so bad I loose my voice and its gross!

Happy Birthday Butterfly!

2009-03-07T22:04:00.004+13:00

I left my keys in my locker door ( thankfully a kind person found them and handed them in to the student association for me to eventually go and collect), left my umbrella in the Dr's office (she kindly phoned me to let me know) and goodness knows where I left my brain...

I cried in my first lecture reading the lovely card one of my friends wrote for me, I cried writing up notes when my brother sent me a happy birthday message, I cried when my Dad sent me a message (I think I'm a bit homesick at the moment), I cried at lunch due to 'previous friend' noticeably avoiding me and frustrating everybody else in the process.

I needed an urgent appointment at the Drs because my jaw pain that has been bugging me for the last 4 weeks had turned into almost crps like intensity stabbing pain in my ear whenever I swallowed, chewed or opened my mouth too wide. Turns out it is probably a blocked eustasion tube and now I am on even more meds to try and sort it out (I hope it does soon as its horrible).

I was cheered up by JoJo and went home to open the presents I had waiting and then to nap for a few hours (as I was so tired after the first week back at uni and all the things that have been going on).

Evening came and I went to a flat warming party... so did the person who was my 'previous friend' (which led to a complicated dance being performed most of the night). It turned into flat warming/birthday party which was so very nice. They sang happy birthday to me and I had a lovely cake, everyone enjoying a piece of it. We played Cranium (the most hilarious game I have ever played as there were 10 of us playing) till almost 1am in the morning, making the night end on a very high though exhausted note. I made it home ok on my scooter despite bleary eyes and being stopped for a breath test (which happily read NO ALCOHOL) and after texting my friends to let them know I was safely home I sunk into bed hoping that I would sleep in.

This morning the sun was shining brightly but I didnt have any energy to do much because of all the missed sleep recently. I eventually got up, showered and dressed to be 'kidnapped' by JoJo and co, off to a mystery picnic location. What lovely weather it was seen as summer is over, and we had a glorious picnic lunch followed by a walk along the beach soaking up the warm sunshine. It was nice to get away like that, going for a road trip and then relaxing for a few hours not really bothered about anything but whether any of the cheesecake would be left for anybody else to have some :)

I feel special, so special and almost unworthy...I have friends who make plans, plans which show they care and friends who take the time to say happy birthday to me. That is what birthdays are all about being reminded that there are many people who care and it couldn't have come at a better time. THANK YOU SO MUCH EVERYONE!!!

Birthdays also come with wish making...I made one wish, that this year would be a good year and that I will get through it without any major setbacks, like the last 3 years have been full of. I think I deserve at least that dont you?

Getting back up.....slowly

2009-03-05T18:31:00.002+13:00

The world wasn't instant brightness the next morning but it is slowly showing me that it hasn't forgotten the recipe so I know that it is there somewhere.
Just a quick one to keep you updated, I had my meeting with the Associate Dean (who is lovely by the way). She is keeping everything confidential for now, deciding that if we tell everyone then it will bias my grading. Instead, she is trusting me to know when I feel unwell and then I am to inform my clinical educator on that day as patient safety (and my own) is paramount.

I really appreciate the fact that she feels she can trust me to make that judgment and this way I can show my capabilities naturally and then hopefully pass the competencies in a truthful way. I still need to show that I am capable, something that would be hard if I was having to 'prove' myself while not being 'allowed' near certain patients because of somehow being 'unsafe'...something that got in my way last year and created some complicated situations.

I would never put anyone else in danger so I know that she is right in trusting me, its just nice that she feels she can! And I also like the fact that she is wanting to keep in touch so we are going to meet up again in a couple of weeks just to see how everything is going. I feel like this shows that she really does want to offer me support and is not just saying it. I have also been given the name of someone else I can talk to about any aspect of the course (in confidence) should I wish to do so.

I am quite relieved as now I know the right person knows about me and also feel better knowing there are ways and means to get through even if it means taking a slightly longer route that normal.

Next on my list is to go and see my student advisor at Disability Information and Support (who I have been seeing for the last 2 years on and off) to get my paper work in (proving I am elegible for extra assistance) and organise access to the special quiet room in the library and my digital recorder and also anything else that I may find useful this year that she may suggest :)

I go and see a new dr, early next week too (my friend who also has CRPS has been seeing her for a couple of years) Lovely Jo is going to introduce me so that will be helpful and I think it will be nice having a dr who knows and understands how CRPS can affect a person on so many levels.

But there are still somethings going on that are a bit stressful. There are aspects of my life that have got more complicated, all I can say is it seems to be turning into a series of unfortunate events, but overall I feel much calmer-more in control.

And if a bit more in control is how I feel then that is nothing to be sneezed at, a few days ago I was drowning but now I am treading water-a much better place to be even if I still have to learn to swim to the shore.

Pain and exhaustion... a bad combination.

2009-03-02T21:11:00.004+13:00

First day back was overwhelming on so many levels....
Too many for me to even try and figure out, so I think I will succumb to shear exhaustion and try and get some sleep (hopefully more than last night). Pain is bad tonight, burning all the way up to my hip and at the same time my foot is painfully frozen cold. I don't even know how I am going to survive this, I have no game plan. I cant believe how frightened I feel just now, like I'm out of my depth or something and I'm scared that at any moment someone is going to bust my cover and find out I don't belong in this level after all.

I think I just need a good nights sleep and everything will be rosy in the morning, I know I shouldn't let this get to me but sometimes its too strong to fight, I just want it all to go away.

Tomorrow afternoon I have a meeting with the associate dean, she thanked me for having the courage to contact her...I don't think I had courage, I just knew it was the right thing to do and I had to do it no matter how much I hate the thought of admitting what I have to admit. I am scared about it but at the same time I think I will feel relief too, I just hope I don't break down and cry too much.

Thank you all so much for all your comments, they mean the world to me, reading each one and knowing that I have people who care, care enough to say hi, care enough to read my rambles. Just now they mean I smile and feel loved, and that is the world to me.

Thank you, those two little words don't seem to do justice to the feeling that goes with them.

More dreams coming true

2009-03-01T10:39:00.007+13:00

First of all I just want to say, despite all the things I am doing, it doesn't mean I am not in pain anymore. I am pushing myself more and more to see (with the help of medications and such) how much I can actually handle without displaying complete stupidity or resulting in weeks of nightmarish pain flare - in case I miss the chance now and never feel capable again.

I don't know what is round the corner, I don't know if I am going to suddenly get worse and not be able to will myself to do things, so now while I feel like I can will myself to do almost anything I am going to take the chance (I almost feel like the old me is fighting to show through, the me who once was a human canon ball and who took every opportunity to prove people wrong). I think the summer spent in the pool being made to do things that I didn't think I could handle despite the pain it caused, showed me that I still have some fight in me yet and that I need more confidence - that is why I took the plunge, fought my fear and went to my first ballet class!

It is a very easy going class, a handful of adults who have little or no prior history of ballet. The teacher is young and very kind and didn't make me feel at all silly having no idea what first position was lol. Ballet seems to be more about grace, balance and skill rather than speed and rushing about and being a girly girl it has always been one of my dreams.

I don't expect to advance very much, I suspect it will take me all year to remember all the positions and who knows if I will ever coordinate arms with feet but that is not the point. The point is I am giving it a go! My physio was very excited to hear I was wanting to try, she says it will improve my balance and strength and provide a much needed social element to my life...getting away from study is so very important especially when you tend to sacrifice everything for required reading.

After my first class, when I discovered just how easy going it is going to be (i.e the emphasis is on having fun) the excitement of getting my first pair of ballet shoes started. So on Friday I headed out to find a shop that didn't look too foreboding (I felt rather self conscious going to buy my first pair of ballet shoes at almost 24) and went about asking to try some on please.

To be honest, my excitement lasted till I put the shoes on my feet. Now I don't know if I will be able to will them to actually stay on my feet the duration of the class and some days I know already I wont be able to keep them on but I want to try at least.
The poor lady in the shop...she actually stayed almost a half hour after closing to make sure I left with a pair that I felt I could handle on my feet. The first pair she got me to try were 'perfect' if I was a hardened dancer but were HORRIBLE! how do girls even bear to have these things on their feet and stand up and dance in them???? Suffice to say I did not end up with that pair. In the end I have a pair that hurt to wear but I think I can handle (it didn't matter how many different pairs I tried they all still hurt so I got a slightly roomier pair than the ones that were perfect). In time they will soften to my feet and I think a few extra pain pills before hand will aid in the tolerance levels.

I'm still excited about dancing, but now I've had reality kick in and tell me just how much a challenge this may turn into. Doesn't mean I am not going to try, just means I will be a bit more realistic about what I expect my body to do. But the best thing is I am am not afraid to give it a go!

I'm a 3rd year!

2009-02-27T22:42:00.002+13:00

After the weekend I start back at physio school-seems unreal! Today we had our prelim lecture, an intro into our papers and getting our complex 3 week turn about timetable. I reckon its going to take most of the weekend to get my head around it! Down side is we have 8am starts every day of the week but it looks like some weeks at least my lab group gets Friday afternoons off.

This year we step up with our clinical placements, with 4 three week rotations consisting of 3 half days a week as far as I can work out. I will learn more as next week progresses.

I am glad I had such a relaxing break, I needed time to let my brain rest and to de-stress completely. I also made a lot of progress that would have been difficult had I been working, but now its time to switch on the brain and get back to work-I hope my brain holds up!

Untrue

2009-02-25T20:41:00.006+13:00

I shed a tear for you, a river flowed.
You never saw the care I showed?

I wouldn't hurt you, why cant you see,
You were so very dear to me.

I opened up, I showed to you,
Behind the mask, real me to view.

I feel confused, I cannot say
why have I this price to pay?

What changed? What made you turn?
I have so very much to learn...

The things you said, they hurt me so
My heart you shattered with one blow.

I wish my grief would go away
You are not worth the time of day

I have wounds, they will not heal
Life is cruel, I know the deal.

I cried for you, I shed a tear,
This just shows real friends are rare.

My brain passed the test!

2009-02-25T20:18:00.004+13:00

You may remember, a few months ago I had a bit of an incident at the pool after not sleeping well for a while (I wrote about it here). Well I had forgotten the ED Dr had referred me to Neurology until an appointment card arrived in the post.

I was pretty anxious about the whole deal, the ED Dr mentioned the possibility of it being a seizure and that I might have epilepsy and that was the last thing I needed, I was terrified I would lose my license or something!

Well I had a sleep deprived EEG and then yesterday I saw the Neurologist (who was actually running early would you believe!!). One of my good friends came with me which was very helpful as she had been present when I had keeled over.
He asked me questions I had trouble answering (I dont really remember that evening at all) and then did a neuro exam (which was as normal as it can be in a person with CRPS-but please would could you actually register I have PAIN and be gentle with my hurt parts?).
I am happy to say that I have a brain ;) and he said that it sounded nothing like a seizure and although my EEG basic report showed some abnormal activity he attributes that to the medication I take for the CRPS pain rather than anything else (thank goodness). The episode was most likely due to extreme fatigue and he did mention my previous head injury.

He is ordering an MRI of my brain to be on the safe side, just in case they have missed anything that could be hiding but I'm sure they haven't. He will also let me know the final results of the indepth EEG reading when it is ready. I cant say how relieved I am about the outcome of that appointment, I'm sure the MRI will be fine and then I'll be all good to go and I promise to look after myself better this year-I really want this year to be much better all round!

The importance of friendship and support.

2009-02-14T12:02:00.000+13:00

Valentines day seems a good a day as any to ramble about this, I was going to because of something that occurred yesterday but was good timing.

I often hear people talk about how once they had an accident or were diagnosed with 'whatever' and were no longer able to do all the things they used to, they ended up losing all or many of their previous friends. I can hear you all saying 'yes, that happened to me too..." Some people are even unfortunate enough to get pushed away by family as well.

Friends and family are an important part of psychological well being, they are there for support, guidance, reinforcement, motivation, nurture, trust, interdependence, sharing experience, building confidence, socialising with, heck even to argue with.

Losing friends and family is very hurtful, it affects a persons self confidence, self worth and outlook on life among other things, they can begin to feel unloved. This can have devastating consequences in some situations. Being isolated is a lonely and scary place to be, more so if you are having to adjust to a life that is different to how it had been.

Supportive friends and family help keep you focused, keep you smiling, give you something to laugh about, someone to share with. When you have suddenly lost a part of who you were, having friends keep you grounded and remember that you are still you, are priceless. Without my network of friends I wouldn't be where I am today, I wouldn't have people to turn to when things fall apart, when something didn't go to plan or when I had a bad day, they are who help me pick up the pieces. As someone with chronic pain, having friends who understand the yo-yo that occurs on a day to day basis is the difference between failure and success.

Yesterday I had a conversation with a person who has touched my life in a very special way. We don't see each other often but I know that no matter how much time in between each meeting he will always be there for me and I will always be able to count on his reliability. In fact we were talking about something and he told me that I would always be able to count on him and that he wanted me to know that he would never let me down. That meant so much to me, just to have him realise that I needed to hear it outloud because I have been hurt so many times before. He has been like a father to me in many ways, someone I can talk to and get advice from, share the silly stories that are my life without fear of being judged. I am a vulnerable person, I still have feelings and I still get hurt despite what I tell myself.

So today I just want to say thank you to each and every one of my friends, the ones who have stuck by me through thick and thin, not everyone did so you have shown the stuff of true friendship. All my new friends who I found some way or another along my journey of rediscovery, you have befriended me for who I am, not who I was and that means a lot. To each and every one of you for being there for me, through the good times and the bad, for giving me a reason to get up in the morning and not giving up on me. You have shown me the real reason of friendship, I just hope I am able to show that to you.

“In poverty and other misfortunes of life, true friends are a sure refuge. They keep the young out of mischief; they comfort and aid the old in their weakness, and they incite those in the prime of life to noble deeds.”-Aristotle

Hydrotherapy update!

2009-02-12T12:19:00.008+13:00

As you all know, I have spent my summer break working diligently in the pool to improve function, strength and endurance. Except for a few weeks here and there, I have pretty much been at the pool everyday with weekly check-ins with my physio.

Looking back at where I was mid November and then looking at where I am now 3 months later, I feel amazing! I have worked really hard to improve everything and my physio is really happy with the effort I have put into getting to where I am. It wasn't easy, in fact the first few times it was so hard I cried but now I can spend an hour in the pool and cope very well.
I started out very small, not even able to get to half a length of anything but now I can do repeated lengths of even the more painful movements. And now can even keep up with a moderate to high intensity aquafitness class!
I am swimming lengths, can go on forever just kicking and go faster than some people swimming freestyle. When I am hopping and running in the pool I have symmetry comparing left to right and apparently I make it look really easy! I have worked hard and now have improved my right hip flexion, something I have struggled with since my surgery 2 years ago.

I really like working in the water, it decreases the pain flaring compared to working on land and I find I can push myself much harder in the water as a result. Also its useful, you cant fall and hurt yourself in the water-just end up with a mouthful if you loose your balance! I'm able to control the dorsiflexion at my ankle now although I still don't have comfortable range, I'm sure that will come. I can walk on my foot properly now whereas before I was walking on the lateral side all the time. I have also pretty much got rid of my limp, it only comes back when I am really tired and in lots of pain. This is super news for me as I have had issues with this for so long now that its like I want to celebrate loosing my limp!

I had my last physio session on Tuesday to work out a game plan for the coming university year, around my studies, I am going to try out ballet, go to an aquafitness class, fit in another pool session and a walk on the beach each week. Comparing it to what I did last year it seems daunting but I need to keep up the physical activity to improve my confidence that I can do this. It doesn't matter if some weeks I don't fit it all in but it is something to work towards and you know what? I cant wait to go back down and start! I have many coping mechanisms put in place and lifelines if I need them, but I want to see that I can do this on my own, I am an independent young woman and I dont see why I cant with the help and support of my family and friends.

I really recommend trying out a warm water pool if you can, its a relaxing environment where you can push yourself and the pain flares are not quite so bad. The water supports your body and decreases the amount you are weightbearing which can be helpful while creating a certain amount of resistance which makes your muscles work. It can be so fun too, makes therapy more like a game than hard work and that has to be a plus!

A look at acceptance and chronic pain...

2009-02-11T23:21:00.003+13:00

I want to send you over to a blog I read if you have some time.

Healthskills has a post up about acceptance which I found very insightful and maybe you will too. There is lots of information and relevant studies to further your understanding on this blog and I think I learn a lot from reading it, although some times I dont fully understand it, I certainly try my best. The lady who writes this blog works in a pain management clinic and I hope to meet her next Monday when I go for an 'observation' day!

All dressed up...

2009-02-10T23:18:00.002+13:00

Here is a picture from the Saturday night party, there will be more at some point as photos were taken all evening, but I wanted one taken on my camera that I could have now. Photos have become very important for me somehow, I think its the rarity of getting dressed up and also needing photo's to aid my memory. I got so many lovely comments on the night that this is a good reminder for me that maybe I am pretty...I need that boost of confidence.

It never ceases to amaze me how good we are at hiding pain...I look perfectly fine, no-one would guess that I had just fallen, or that after a day and night of dancing I was exhausted and in more pain than usual. And we all look like this, just because we are so used to it.

All danced out

2009-02-10T22:44:00.001+13:00

After a shaky start, I managed to survive the whole dance weekend albeit with pacing, others looking out for me and pig headedness.

We had pretty hot weather and the building didn’t have air conditioning making for a pretty uncomfortable environment at times, but that didn’t stop everyone’s eagerness to learn new dances. I cant remember how many we had learnt before morning tea, possibly 4-5? That’s plenty for a brain to learn and then coordinate the body into dancing without messing up too much. They weren’t easy, involving chains, couples and various direction changing throughout. I absolutely loved the music and the atmosphere created by about 50 international folk dance enthusiasts.

Then after morning tea the crunch set in, increasing heat and lack of fresh air starting taking its toll on me. My head started hurting, I felt like the room was spinning, every time I moved it was worse and I felt like I was going to faint. People said I looked shocking and white as a sheet, not well at all. I went outside to get some fresh air, hoping to feel better because I was not happy about missing out. By lunch time I had our resident doc on my case lol, he had been informed by several people that I was not looking my best. Tony is lovely, he has shown interest in my ‘health issues’ since before I got rsd and has followed my progress along the journey always keen for updates whenever I am back home. He told me to eat lunch and then it would be wise to lay on the grass outside under the tree, the last thing we needed was me out to it on the floor and I couldn’t disagree with that! I ended up going home early afternoon which was a shame but I really didn’t feel well. I did go back for the Friday night party, stayed a couple of hours but only danced 2 dances.
Saturday went a lot better, we worked out that I probably should have had more than just water to drink (a few years ago a dr told me to drink powerade a sports replacement drink as I get low blood sugar and low blood pressure episodes very easily), so I took a bottle of full strength powerade and lasted much better although that afternoon I started feeling unwell again.
I went home part way through the afternoon session to rest up for the gala dinner and party as I really didn’t want to miss out on that and also wanted to be able to enjoy being there.
Saturday night was amazing, it was our groups 30th anniversary and rather special. How proud I felt to be part of it and able to dance, apart from a slight mishap near the end of the evening when I was rather tired, it was fun and happiness. Despite the pain during and after, it was worth every bit. How glad I was to be there and even stay till the end, I even made it for the Sunday morning revision sessions too!
I am pretty shattered now, I had such sensory overload that every part of my body was so hypersensitive I could barely stand clothes anyway. So, I’ve been taking it easy, letting my body recover because just as it is important to push, it is also important to give it time to recover but you cant wipe the smile from my face  A few months ago this would have been impossible but it just shows you what a good handle on pain management and a bit of hard work can do!

Crazy fun here I come....

2009-02-06T07:39:00.003+13:00

I am about to go off to the first day of a 3 day jam packed dance workshop weekend!

Today its 9am-5pm (with a less than hour break for lunch) of dance workshops, information says a sampling of European dances especially from Russia in the morning and then Bulgarian dances in the afternoon. I am both excited and nervous...I have prepared as best I can, meds, lignocaine, TENS, more meds, good shoes, snacks and I have promised myself that I wont try and pretend I am fine...if I need to sit out and just watch so be it, I will listen to my body.

We also have a party tonight (as well as tomorrows workshops, a gala dinner and then another party and then revision on Sunday morning...does that just make your head spin like mine does?), whether I actually end up going tonight is another matter, I am just staying cool, calm and collected and if I don't well thats ok as I want to be going tomorrow to the big dinner and dance party.

I am slightly nervous but people keep telling me to be positive and I'll be fine...how come being positive automatically means you will be fine? I can be positive all I like and still not get through simple tasks some days, just shows they dont understand really what this is like for me. BUT I am positive all the same, positive that I will enjoy myself to the max and have loads of fun, but I'm also positive that I wont push myself too hard to the point where I am prone to have an accident...that is the last thing I need lol!

I am prepared as much as I can be, so now I just relax and enjoy myself! Take care.

The good news.

2009-02-02T09:48:00.002+13:00

Which is still good news thankfully, though the other night I thought it was becoming bad news very fast lol.

I went to see my pain specialist on Saturday and after a discussion it was decided to go ahead and try out some peripheral nerve blocks. Because of my recent fall and the pain spike, this should hopefully calm everything down nicely...hopefully.

He injected anaesthetic and cortisone into the saphenous nerve and popliteal nerve at my knee, a very simple procedure and not that painful at the time (though my knee is actually still sore from one of the injections 3 days later!). I got almost a day of initial pain relief from the anaesthetic and have been told that the cortisone may take up to 8-12 days to have an effect. Fingers crossed it does as my physio has made it sound like heaven!

I'm still very sensitive to touch of any kind so he said to stop the capsacin cream and just use the lignocaine and see if that helps with the shoes and socks problem. I like this idea because I was having a lot of trouble tolerating the capsacin. I said I really need to be able to wear my shoes (for long periods) before I get back to uni and he agreed.

I also found out that having them fill in the forms for the tramadol will mean that I wont have another review for a whole year! I am so relieved that I wont have to find the money to pay for them.

I have another appointment for just before I go back down to uni, so I can iron out any concerns I may have which is really helpful. I do like how he is good at knowing how things are just from how I act, I find it so hard to actually say out loud how things are as I feel like I am complaining, though I do know I need to get better at this, its not fair making him work it out.

So, all in all, several good things:
A good pain specialist visit.
A hopeful block
And a rx for more tramadol-thank goodness as it was worse than I imagined without it.

I'm ready to cry...

2009-02-01T23:57:00.002+13:00

and really its pathetic of me lol...
but the country music the neighbour is playing at MIDNIGHT is so loud I cant sleep despite the fact I am so over tired just now.

And also my good news is turning into bad news before I even post it as good news, that is unfair too...

I just want to get some good sleep-is that too much to ask just now?

Situation resolved

2009-01-29T20:23:00.003+13:00

So with the help of my lovely physio I am now back on tramadol, with enough to tide me over till my Saturday appointment with the pain specialist.
As soon as she saw me this afternoon she knew all was not right and was on the phone to organise an interim supply.

Apparently part of my symptoms, the not being able to keep still were withdrawal symptoms-whoops on my part. Apparently I am on enough that its not a good idea to go cold turkey.

One thing it did prove though was I do need the meds, so it wasn't all for nothing-and I dont want to do that to myself again!

Todays physio session was focusing on pain relieving strategies so that was also helpful. We worked out the best things for me to do in the water to relieve pain when I am in a flare. All I can say is thank goodness for people who are there to help.

A+ for dumb idea

2009-01-29T10:24:00.000+13:00

Hello! My name is stupid…

Ok so I may not be the brightest cookie…

Running out of meds was NOT my brightest idea…

Gee I guess if I was wondering whether the tramadol was helping or not I have got my answer, I want some now, I cant sit still due to the horrid crawly, intense ‘I cant sit still’ sensation of nerve pain.

I tried my TENS, mirroring, trying to sleep was a nightmare, I couldn’t even lay still but eventually I cried myself to sleep. Yes, I am ashamed to say I cried a lot of tears…mostly of frustration and telling myself off for getting into this position, but also in pain. This is where having a room of your own is most important, you can cry as much as you want and everyone thinks you have just gone to bed!

I have a 40 min drive ahead of me to get to physio and right now I am wondering how I am going to sit still for the drive, I sure wont be doing this to myself again in a hurry-guess I have learnt my lesson good!

Just to explain a bit, I only got given a 2 month rx for tramadol as it was a newly introduced med, then we made a follow up appointment-just didn’t realise it was 2 months 3 DAYS after the last one…so thus I ran out 3 days before my appointment. I did work this out last week but silly me thought that I would be able to handle 3 days without and didn’t want to bother the dr beforehand…I’m thinking I didn’t put much thought into that lol.

Oh well, you live and learn-sometimes more painfully lol!

Two schools of thought...

2009-01-26T13:40:00.000+13:00

I have always wanted to do ballet but we never had the money when I was growing up so it never happened. I was talking to a friend the other day and she said I should find out about adult beginner classes and just see if it might be possible so I did as she suggested.

I got some information back and it may be affordable, just need to do some working out.

But here is the crunch…I told my Mum.

Her first thought was “what makes you think you will be able to do ballet?”

…my reply “what makes you think I can’t?” (I didn’t actually say this out loud, instead I defended myself by saying all the things I still do, so why cant I just give ballet a go?...)

Ok so I may get there and it may be too much but how do I know if I don’t try? I’m not about to give up a childhood dream just because ‘I may not be able to do it’…when did I turn into that person? I don’t expect to be doing point or making it my career, I don’t even know if I will ever look graceful I just want to give it a go and have some fun in the process…

I just find it interesting that’s all, how different people think along different paths, it never occurred to me to think that maybe I wouldn’t be able to, I wanted to challenge myself and see if I could.

Tips for a better life...

2009-01-19T17:47:00.001+13:00

I don't normally do the whole pass it on thing but these really stuck a chord for me and I thought I would share them with you my lovely readers if you feel like reading them, some of them are pretty important things to remember I have a feeling...

By Nithya Shanti
Tips for Better Life

1. Take a 10-30 minutes walk every day. And while you walk, smile.
2. Sit in silence for at least 10 minutes each day.
3. Sleep for 7 hours.
4. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
5. Play more games.
6. Read more books than you did the previous year.
7. Make time to practice meditation, yoga, and prayer. They provide us with daily fuel for our busy lives.
8. Spend time with people over the age of 70 & under the age of 6.
9. Dream more while you are awake.
10. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
11. Drink plenty of water.
12. Try to make at least three people smile each day.
13. Don't waste your precious energy on gossip.
14. Forget issues of the past. Don't remind your partner with his/her mistakes of the past. That will ruin your present happiness.
15. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
16. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
17. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
18. Smile and laugh more.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Don't take yourself so seriously. No one else does.
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about. Don't compare your partner with others.
24. No one is in charge of your happiness except you.
25. Forgive everyone for everything.
26. What other people think of you is none of your business.
27. However good or bad a situation is, it will change.
28. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
29. Get rid of anything that isn't useful, beautiful or joyful.
30. Envy is a waste of time. You already have all you need.
31. The best is yet to come.
32. No matter how you feel, get up, dress up and show up.
33. Do the right thing!
34. Call your family often.
35. Your inner most is always happy. So be happy.
36. Each day give something good to others.
37. Don't over do. Keep your limits.
38. Share this with someone you care about

I've been tagged...

2009-01-10T10:07:00.002+13:00

So I’ve been tagged, huh-sorry was I playing tag? You know I cant run, how is this fair? you didn’t give me long enough to get away…lol.

Rules: Once you’ve been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged.

I am the kind of person who usually cant be bothered with this type of thing. I don’t go much for those forward emails and such although some I do actually forward to select people myself (if they really do engage me).
But I found this interesting, I was curious as to what I would actually put as my 25 things and whether it would be hard to do so I gave it a go.

I’m not going to “tag” others though…if anyone wants to have a go feel free and join in the fun but I’m not about to force people or make them feel obliged.

*I’m not sure I even know 25 people to tag anyway lol!

Ok so 25 random strange things you may or may not want to know about me (in no particular order)…

1- My Dad thought I was a boy when I was born…the midwife knew otherwise and shoved my baby parts in my Mothers face to double check (although I’m sure she wished I was a boy over the years, all the trouble I have caused).

2- I was awarded “Most improved player of the season” at our Tennis club when I was 10, the second person to get this Memorial cup

3-I sort of saved my whole family and our house to some degree the morning of Christmas Eve 2001, when we had a house fire and I was the first to wake up (remember to put shoes on if nothing else if you are ever in this situation).

3-I was home schooled since I was 12, I don’t have any high school qualifications but I am a bright cookie (getting into physio school proved that)

4-I have 5 brothers, 2 older and 3 younger…one (older) who has special needs, both physically and mentally

5-I love to wear dresses and skirts and look pretty but when I was growing up I was more of a tomboy

6-I do things to please others, though I am learning that I actually come first…

7-I’m almost 24 and I have never been kissed by a boy (how sad is that!)

8-I am a cry baby, very emotional…I remember crying when I first watched the ugly duckling at age 4

9- I feel other people’s emotions very keenly, so much so that they can make me feel very sick and I wonder how other people don’t seem to notice anything

10- I have never dyed my hair (my cousin put in highlights once but I don’t think that counts)

11- I have had self esteem issues ever since my first day at primary school when I was bullied

12- I’ve had hip preservation surgery that basically enabled me to walk again (and gave me a cool scar and some screws)

13- I sung solo in a primary school production (was one of the lead parts too) but I have lost my ability to sing now, due to meds I think

14- I am still quite proud of my boss’s speech at my leaving presentation (my first ever job, worked in a law office for almost 2 years). He had pulled out my CV covering letter and read out how I had described myself when I had applied for the job and said that it was all true and more. I felt so appreciated in that moment.

15- I am Catholic and probably rather traditional at that, but it’s my religion and I don’t force my beliefs on anyone else so I’d like people to respect mine

16- I am a bit of a Winnie the Pooh fan…duvet, calendars, soft toys, stickers, stationery, clothing, jewellery…you get the picture lol

17- I still have a balloon I was given the day before my 5th birthday (its one of those fancy foil ones but still, that’s almost 19 years ago)

18- I was the first (after my Mum and Dad) to hold my 2 month prem baby brother, he was so little and connected to lots of machines that it was rather scary!

19- I have never been drunk, ever (I hate vodka, wine, beer etc which doesn’t help but I love chocolate :)

20- I go crazy over post-it notes, I have all sorts of different ones for different purposes

21- I slept under the table at my best friend’s graduation dinner, the poor waiter got such a fright when he saw me (so I got told)

22- I still only have my learner’s car licence (you can get this when you are 15) and I don’t drive-though I’m supposed to be starting to practice again sometime soon

23- I could never get my single leg spins on the ice quite right, used to have perpetual bruises on my knees because of it.

24- I am a perfectionist, this is a not so helpful trait

25-and last but not least-I have an inner strength building condition called CRPS, it turns your world upside down and sets a life long challenge, making the levels harder at will. I like to believe that I can win it over and get to the finish but know I need my friends to help me get there

Its just too hot

2009-01-08T08:38:00.003+13:00

We are having a proper summer just now with temps up in the 30s Celsius. I am the first to say I don't like the cold but my previous tolerance for the heat seems to have disappeared too.

My bedroom is upstairs, and faces a direction that means thus far I have failed to keep it cooler in any way, in fact it seems to be the hottest room in the house :(
Not very helpful when it comes to resting up or trying to sleep, even at night as it doesn't cool down much either.

It is just too hot for me, my foot feels like it is so swollen that my skin could explode (it doesn't look swollen though so that is ok) and doesn't help the burning pain. I'm cranky from pain and lack of sleep and just wish I could stop hurting for just a little bit, I'm tired of all this...I'm hoping that this weather doesn't last too much longer as a few cool days would be appreciated-not just by me but I think a few people!

Worth it...

2009-01-04T00:30:00.000+13:00

Hair done up nicely
Healthy looking face (created by natural looking makeup to hide the deathly pale face and exhausted looking eyes)
Nice jewellery
Pretty cream dress with roses and sweet little top to go with it
A spray of scent (Crabtree and Evelyn-Freesia)
…black trainers, but as soon as we were in the Church, the trainers came off and white ankle socks were left on.

I went to the wedding and I’m glad I did.

For weeks I have been trying to dream up excuses as to why I wouldn’t go…I don’t have anyone to go with… I don’t drive so I cant get there…I don’t know if I will know anybody else there…then I thought hell, stop being pathetic and just go (in the end I actually got to go with my bestest friends mother so I wasn’t alone, nor did I have no transport or not know anybody else there but I had made up my mind before all that).

She was beautiful, her dress was a dream, she radiated with happiness. It was amazing but I felt like crying as it made me wonder if I would ever get my fairytale wedding-I pushed that thought out of my head, this was her day and I was truly happy for her, it wasn’t about me.

May the promise you made each other last forever and may you be blessed with a long loving life together, growing closer with each passing day.

Through the eyes of the year

2008-12-31T12:02:00.004+13:00

As the end of this year comes to a close, its time to look back upon things and reflect. What have I learnt? What have I achieved? What am I going to strive for in the New Year? Have I shown myself worthy of all the good that is around me? And so it goes…

This year has been unique in many ways, eventful, challenging, trying, good mixed in with ‘bad’.
I started and completed my first proper year of physio school, I finally got my CRPS diagnosis (after struggling for over 2 years), found an informed pain specialist and great physio, I made some truly amazing friends, I proved dreams can come true…

I learnt so many things, things that have meaning, things that don’t come easily. To carry on when the going gets tough and to believe those good times do come, to be brave when facing the unknown and fight like a lion.
I learnt a lot about myself, to trust my judgement; to persevere in the face of others doubt and that I am worthy. I learnt to put myself first sometimes, to listen to my body and that it’s ok to have bad days. I discovered that its fine to ask for help and that it’s not showing failure or weakness.
I learnt the importance of having people to talk to, the necessity of sharing with others and being a sounding board in return. I found out I could actually be helpful even though there is ocean between and many miles of separation. I discovered the healing in a simple act such as a hug or a kiss, the unburdening and secure feeling that occurs without words between two people who totally understand each other. I learnt that there are medical people you can trust and that some really do understand what you are going through.
I have learnt a lot…

I still have a long way to go in accepting my life as it is, I still have many things to learn and many things to achieve before I can say that I have fulfilled my obligations in this life, but I feel I am on the right path. Do I stumble? Of course I do, but I have friends to take my hand and draw me back to the path and I have faith. Do I forget to count my blessings? For sure, but I have reminders that let me know how fortunate I am.
Yes I live in constant pain, yes I have continuous barriers to overcome, yes I pretend to most of the world that I am fine, yes I have times when I feel like I can take it no more BUT I am still alive, I have been blessed with life…I still wake up in the morning and see the sun come in the window. I still hear the birds chirping in the trees and I still have hope. For as long as I wake up each morning, I have a reason to live and because of that I have a reason to fill this life with good things and to help others fill their life with the same. I have been given a beautiful gift and it is an honour to be able to go out and share it with the world.

So 2009, I am ready and waiting with open arms:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr

CRPS

Say Hi to Mel!

2008-12-30T06:35:00.003+13:00

I'd like to introduce you to Mel, I found her blog yesterday and its an interesting read for many of us. She is another fellow CRPS survivor who is spreading the word to all who will listen!

Letting out the Hurt

2008-12-29T12:11:00.002+13:00

Often times I try to gloss over the hard parts of living with chronic pain, well what good does it do me dwelling on it anyway? Or what good does it do anybody else? But recently I found out that in order to start feeling good once again (really good), I actually needed to get right down to the bottom have my pity party and then arise a new, ready to begin again on the right level and remind myself that I actually do have good days when I can compare them to the not so good times.

Bad days are ok, as long as you have good days too, as long as they re-focus you, and you don’t get caught up in the rotten feeling too long and forget that there is a reason to be alive.
There are many feelings that come over a person who lives in pain day in day out…

Frustration-at what you can’t do, at how others treat you, at the cognitive issues, being at the mercy of drugs you would much rather not take, at the abilities you used to be able to do and now have so much trouble with

Anger-at the Dr’s for not being able to help more, at yourself (what did I do to deserve this), just because you have all these dark feelings, because you cant make yourself do something just because you want to

Helplessness-that you have no power over what is happening, that despite what you do it has a mind of its own

Hopelessness-that you have no future, that nothing will change for the better, that there is nothing to look forward to

Loss of self worth-that because of the changes you are now of no worth to anybody, no-one will love you

Fear-of the unknown, of tomorrow, of next week, of next year…of a new procedure, a new drug

These are all very real feelings and the list goes on, things I’m sure we all go through at some point or another.
I am not ashamed to say that I cry, sometimes more of the day than not…I need to do this but these days are few.

But just because we have these feelings doesn’t mean we are incapable of feeling happy, excited, fulfilled, or lose the ability to smile and laugh and have fun - it just means we are human and sometimes this is an important thing to step back and remind ourselves of…we are human first and it is natural to think and feel everything we do and is not a moment of weakness or something to be ashamed of but just another natural part of being alive and it shows that yes we are human!

CRPS

A Hug from Me to You...

2008-12-29T01:00:00.000+13:00

Isn't he just so cute? This is my special package that arrived in the post on Saturday and he came from a very special person! Alison you brightened up my day so much and I just love him to bits. Thank you so much.

Christmas and tradition

2008-12-27T21:14:00.002+13:00

In my family, Christmas is that time of year when my Mum works well into the next morning for weeks on end preparing gifts for all the people she likes to make things for. She makes Christmas puddings, Christmas cakes, Christmas fruit mince pies and all sorts. She goes shopping for presents for us all and makes lists of what she needs to do for the day itself, it is a huge extra workload.
But in among all this, she has not forgotten the meaning behind Christmas, it is not just a commercial holiday for the shops to benefit from, it is a special time of year to remember the wonder and meaning behind Christmas, a time to let your differences go and celebrate with family making time for everyone in a way that often gets lost throughout the rest of the year.
I felt frustrated and guilty many times in the preparation before Christmas this year. I did not help in the way I wanted to, the way I always used to. I wanted to help and make her load lighter but physically I was not capable and she often shooed me away off to bed or to rest because she knew and understood that my needs were greater than hers. This was the hardest Christmas for me yet, even harder than the year I had just had surgery and was on two crutches still. I don’t think it was because I didn’t make the effort, I just think I didn’t have it in me, things have got worse and I’m still drained from the year at uni.
I’m glad she understood though and even said I had done my fair share and it was time to get out of the kitchen so the boys would go in and help. I just have to accept that doing what I can is good enough and not to think about previous times.

We had a lovely day for the most (apart from a few small hiccups of lost recipes and no boys in the kitchen etc). Started the day with Christmas Mass and then home to prepare for our guests and our Christmas lunch. We had a lovely dinner with food a plenty and were still at the table talking and enjoying the company till late into the afternoon. Crackers were pulled, presents were opened, jokes were shared and the mood was merry.
I was thoroughly spoiled with many presents, my Mum always spends a lot of time deciding on what a person may like and I got some really lovely gifts because of her thoughtfulness.

I had uni friend stay for Christmas-her first, I found out she would be alone for Christmas and although she doesn’t celebrate it I didn’t want her to be alone for the holiday. I think she enjoyed her time with us and it really helped keep me busy (although I found it hard work) so that I didn’t spend time missing my best friend too much. We are very close and with her having just moved to London I am rather lonely at times as I miss her so much. My uni friend helped me decorate my room, and wrap presents and it was nice giving her gifts and a Christmas stocking and including her as part of the family.

I’m glad we still remember what Christmas is all about despite the tone of this time of year. Despite the stress it creates we are still able to find enjoyment and take time to remember its more than just food and presents, it’s a special birthday celebration that we must never forget.

Hydrotherapy week 3 (belated)

2008-12-14T09:37:00.004+13:00

Week 2 has come and almost gone so this update is a little late, but better late than never!

Physio's comment "you make it look so easy" and my reply "well its not"...

I think that tells you that I am still progressing well as far as she is concerned and now on top of my original routine of torture, she has added hopping on each foot in the water.
I wasn't too happy with this addition and almost didn't make it through but she is full of compromise and fiddles about with things so I ended up being instructed to spend half a length hopping, then half a length kicking on my back, then half a length kicking on my front and then half a length hopping. That way I don't spend too long on any one thing (and don't have any excuse to not do them lol).

Tuesdays session with T (the physio) was spent talking for a bit rather than all in the pool this time, as I needed a 'lecture'. I had something happen on Monday and completely lost it, I broke down and spent most of the day in tears. The pain wasn't even as bad as it gets, I just couldn't handle the combination of things that had happened.
T say's that its all good to be taking a break but I still need some structure and that its very important that I make myself socialise. I have no routine and I basically spend most of my time with my family.
In the long run this is going to be more bad than good as in just this amount of time I have lost hold of all the coping mechanisms I had in place during semester. I can see this has happened, I have almost no energy to make myself do anything!

She said its very important that I try to do as many things that would be normal for someone of my age and because I tend to be more antisocial, this is one aspect I need to work really hard on.
I also need to find some voluntary work (which will fit around my life) as this will provide some structure, socialisation and help me regain my lost coping mechanisms. I've also planned some time away from my family for a break in the New Year, so I am looking forward to that.

Its amazing how in such a short space of time you can loose hold of something you never even thought you had...I now see that the hectic life of university was allowing me to cope well-because I HAD TO. Now that the pressure is off, I don't really have to do anything and so I am finding it increasingly difficult to do anything.
The trick will be to find a balance between these two poles so that I get the time to rest and recover that I need, but still retain the coping skills and motivation that is also as if not more important in the long term.

Grant me patience...

2008-12-05T22:32:00.003+13:00

Why does the boy (brother number 3 of 5) decide to turn up his music (so called) just when I get in to bed needing to get some sleep?

Honestly I thought we were having an earthquake just now as my room is shaking! Brothers-no thought about anyone else at this hour of the night and its happening regularly.

Week 2-Hydrotherapy

2008-12-03T22:05:00.000+13:00

I had a follow up session at the pool with my physio yesterday. I was so tired and had no energy but I made myself go even though I was very tempted to cancel.
She was so so impressed with my progress, it was so rewarding seeing how happy she was-it made all the pain so worth it!

She said she had been worried with how I was last week and that if I hadn’t improved much or not been able to control flaring then she would recommend I get the nerve block. Since I have progressed so well, we will just remember that it is available and if required later the option is still there.
A week of doing it alone I am now able to deal with the pain much better so I can push myself and focus on what I am doing without having to stop so much. I did have points of having to stop, take a few deep breaths and then carry on but that is much better than crying. I now have better plantar and dorsiflexion at my ankle though still very stiff mid foot, she is not worried about this at the moment, we will deal with this later. So for now I am carrying on with kicking on my front and back and the walking in all directions adding bouncing and bigger steps with these. I also have to do stretches as much as I can in the water, watching my form and then some pushing off from the bottom alternating each foot as I instinctively cheated by accident!
She got me to pretend that I was kicking a ball in the water and I found this really hard-I couldn’t remember how to kick a ball! She says she wants to try and get me back to being able to, I wonder if that is really possible? Its really quite exciting the possibilities this has if I really put my mind to it.
When I get rid of this cold thing I will be able to do more but just now I’m having trouble with my breathing and coughing so I just have to watch how hard I push myself.

Its actually a lot more work than just the time spent in the pool each day too, I then have to come home and use my TENS and do mirroring to ward of flaring and I know doing this is really important in controlling the pain. And it is really energy draining so I don’t have much left in me to do anything else but as time goes on I think I will have more energy for other things as well.

Overall, I am really pleased with the week’s progress, its much further than I imagined I would come and although I know I still have a long way to go, I can see that it is possible and that I can do it. World just watch out! I have been empowered-I can see the possibilities that my pain team are opening up for me as long as I accept the challenge…

Feel the burn...

2008-12-01T22:12:00.000+13:00

If this is what its like with the lignocaine, I hate to think how it feels straight.

I saw my pain specialist on Saturday and he prescribed a strong pain med-tramadol SR, plus lignocaine gel and Capsaicin cream. I was having a bad day and couldn’t bear him touching me and I felt really bad about it, I was trying so hard not to cry in front of him that I didn’t speak much at all really. I think he guessed that I was in pretty bad pain even though I didn’t say and they also called my physio to talk to her while I was there. He gave me the option of having a peripheral nerve block as well but I am thinking about this before I decide whether to or not to go ahead with it. He offered to do it then and there, but he was running late and I didn’t know what to decide so I chickened out. He has told me just to give them a call before the 10th of Dec if I decide to go ahead and they will fit me in. Now that I know where he will probably inject I can think about it better but I am going to talk to my physio tomorrow and get her opinion to help me decide.

Today I filled the rest of the prescription (got the tramadol on Saturday afternoon but they had to get the creams in). I was instructed to use the lignocaine gel and then the Capsaicin cream on the area that is most sensitive and painful, but to make sure I put the lignocaine on first. Well tonight I got up the courage to try it out, I liberally applied the lignocaine gel, testing to see if I could feel much and then added a bit more just for luck. Then I sparingly applied the capsaicin cream to the same area-not long after the burn started…hmmm so this is going to be interesting. I’m supposed to do this twice a day so I hope it gets better the more you apply it.

Sick of being sick...

2008-12-01T17:48:00.002+13:00

Since part way through my exams I have had this stupid cold thing, chesty cough and now a head cold type feeling as well. I think its been over 4 weeks now? I feel dizzy, my head feels like its full of cotton wool, I cant hear anything and I am coughing my lungs up and feel totally washed out. I started taking a couple of cold medicines but not regularly (naughty me).
I went to see Jess and Hamish yesterday and Hamish commented that I sounded like a cat with fur balls (thank you Hamish)! I think I need to be better about taking the cold meds because this is not good and I feel like I am getting worse not better.

I was talking to my Mum just before and then all of a sudden a feeling of extreme nausea comes over me...I have been laying down for a while and I am starting to feel a bit better but I daren't move. This is more frustrating than anything although its not nice as well-life is so fun (not). I wonder if the combination of drugs I am taking at the moment is just a bit much for my poor body to handle.

I just hope I start feeling better soon, its hard enough to do things without feeling like this as well!

Stupid wrist...

2008-11-28T23:11:00.004+13:00

4th lot of x-rays in 6 weeks
Special doc appointment booked
Wearing my splint as instructed

WHY THE FREAK DO I DO THIS TO MYSELF?

Anyway its done and its turning into another interesting experience. I am sure people are just being anal about it all but then I guess this is better than just leaving it and then finding out later that things are not as they should be.

I had a hand therapy appointment yesterday to be assessed. My thumb joint and scaphoid area are "angry" as put by the physio lol. I've been told the most important things is managing the pain to see if we can get it to settle and see if a more localised area can be identified as the problem. I have good ROM (I had been working on this before I went) which is just as well, I am a physio student after all!

I am not to be stubborn...I am to wear my splint, not spend too long doing my Christmas crafts or spend too long in the garden (20 min rather than hours), heat pack it blah blah blah and I'll be going back to see him at some stage in the near future I guess.

I am so so sick of all this, am I ever going to have a time when I can just be normal and like do all the ordinary things people do over summer break? like work and um have fun instead of never ending physio, doctors, specialists, medical tests, blah blah appointments?
Have I or have I not done enough of this for one lifetime????

Day 2

2008-11-26T08:55:00.002+13:00

I put off going to the pool yesterday for ages, I was still so tired that I didn't really feel like going at all, but my physio sent me a message saying she had talked to my pain specialist and that he had agreed that I needed to go to the pool everyday (groan).

After dinner my Mum said that I could leave it for that day as it was only once but I felt that if I didn't make an effort, that I would take the easy way out too often and end up not going as often as I need too.

We went to the pool just after 8pm at night and it was really quiet and may turn into being a good time to go to that pool. I even got the slow lane all to myself for over half an hour!

For every length of freestyle I have to do 2 lengths of just kicking but I have to pay attention to how I am kicking and that I actually use my right leg...my physio said she didnt care how slow I moved, I need to focus on my technique and trying to mirror the movement of my left foot. I tend to use my ITband and my hip muscles rather than my calves and even when I am consciously trying to use my calves I STILL couldn't really get them to work.
I have to practice walking slowly, forwards, backwards and side stepping, all the while trying to mirror the normal movement of my left leg and and also just kicking on my back, going really slowly and trying to co-ordinate knee flexion with ankle dorsi and plantarflexion...I hate doing this as she made me hold still to the rail and just practice kicking and this makes the pain so so bad and I dont even feel safe for some reason!
She told me to wear a aqua belt round me to help float my middle as I am so small and it helps but I need to get used to it.

She is hoping that over time I will feel what is the right movement whereas right now I am having to watch what my foot is doing or else I dont know where it is!

But things will get better I hope, still early days and I'm going to see my pain specialist in 4 days so hopefully he will be able to help me out!

No-one said this would be easy....

2008-11-24T13:56:00.002+13:00

...but I didn't think I was going to discover just how bad I am! I have just been striped of my smokescreen and goodness, I never realised how thick it was!

I have so many ways of getting around NOT doing movements but when you have a physiotherapist watching you like a hawk, trick movements are spotted right away.

We had hardly done anything when the dreaded words "we are going to go right back to basics" were uttered. As a physio student I know too much, I know what I should be doing, I know in reality the simplicity of them and cannot deal with the fact that I just cant make my body do what I want it to. As a result I feel embarrassment (but I would never feel like this towards a patient, that is the strange thing...if I had a patient like me I would be encouraging and do exactly what my physio did, explain how CRPS makes even just the simplest things too hard to start off with).

The truth is, I find it so hard being the one on the other end. I want to be the physio helping patients-I am not supposed to be the patient myself and this is creating an added obstacle. One I need to get passed so I focus all my energy on getting through the torture that is what this hydrotherapy is to me just now.

One little, essential movement results in tears, not because I am weak or a baby, but because it is interpreted by my brain as harmful...this is what I have to work through and today I face the reality of what summer is going to be-a painful journey but hopefully worth it. i just hope I have the strength, motivation and determination to push through and reach the goal which signal improvement.

I'm glad I'm not working over summer, I am supposed to try and get to the pool most days and I certainly wouldn't cope with this and having to work as well. She is going to talk to the Doctor about a 'rescue med' that I will be able to take to help ward off flares

Happy 2nd birthday!

2008-11-22T13:36:00.002+13:00

Its strange how time has just flown by...2 years ago today I was nervously waiting in the hospital for my first ever surgery. I was about to let a surgeon cut me up and dislocate my hip (and mess about) in the hope that his work would allow me to walk again. Just walk again...I wasn't worried about being able to run or skate or bike or dance (ok well I was a hoping a little about dancing), just the thought that I might be able to walk normally and be able to keep up with my friends and not be in so much pain.

2 years on, I am walking mostly without a limp (and when I do its has nothing to do with my hip), I can ride my bike, run a little and dance too! My hip is pretty good, I've not had the pre-surgery pain come back ever and I am still amazed each time I go to tie my shoe laces or try and paint my toenails that I can actually do it.

I do have residual issues from the surgery itself, I still have visible swelling around the incision site, I also have quite a bit of pain all round the incision too so when I bump it (or someone bumps into me) it is rather painful.
I don't have amazing ROM but that is because I haven't worked hard to improve it, I feel safer know that it cant go too far (I still have some impingement so was told to be careful anyway).

But despite these surgical issues, I would do it again in a heart beat...being 21 at the time and not able to do so much and being in constant pain because of a FIXable problem was horrible.
I only wish that my surgeon had been right when he said that my fixing my hip would also deal with the pain issue of my foot (now known to be CRPS). Had I known then, what I know now I wouldn't have been so optimistic. But at least my hip got fixed so I am able to do so much more than I had been able to do then-it was worth all the hard work and more.

So Happy 2nd Birthday remodeled right hip!

2nd year physio...tick!

2008-11-18T20:23:00.002+13:00

Wow-can you imagine how great I feel just now? Finding out that I actually passed all my papers and my practicals and even (dare I say it) got an honest grade average!

No just missing out, no just scraping in, just good reasonable passes that anybody should be proud of and I am glad to say that I actually feel good about it.

If I had got these grades say 3 years ago, I would be hanging my head in shame, I probably wouldn't have told anybody about them and I certainly wouldn't be beaming with accomplishment.
But back then I was a different person, I didn't have much getting in my way-I was a machine working my nights away while studying during the day. Everything was easy for me then and I sometimes wish I could go back to being that person...I had things easy and didn't what it was like to really have to work for something.

I have learn't a lot, I have learn't to celebrate my achievements, having pride in what I am able to do DESPITE living my life. I never gave up (though some times I thought it would have been easier) and I never lost hope. I sometimes panicked and worried myself sick but that goes with the territory.

I am PROUD of my 68% (B-) grade average (ok so I am more used to A grades) and this is in my heart...through the perseverance of my friends I have accepted that this is just as worthy of celebration as my previous results. My results though not as high as previous years are just as great, if not more of an achievement because of what I overcame to accomplish them!

Bring on 3rd year!

Oh I'm sorry...

2008-11-08T22:11:00.003+13:00

...but I didn't realise I was invisible.

Please can someone explain why it is so hard to walk around someone WITHOUT collecting them with your bag/shopping basket/trolley/arm/shoulder/*insert object of choice here?
I'm sure I'm not invisible and I don't think everyone who does it can plead vision impairment, or maybe they can and I'm just being unreasonable...I'm sorry if I offended anyone.

But surely they would then apologise when said person who got walked into with said object cried out in pain and jumped due to the unexpected collision? I am sure I do not know...but instead they appear to just stare at you as if you are crazy (oh maybe I am) and like nothing happened, or else totally ignore you.

Well sorry if I speak out of turn but you violated my personal zone and it just so happens that I do not appreciate it, and probably much to your amazement and bewilderment, it actually hurts-sometimes enough to make me cry (as much as I try to hold them back).

So I'm just asking, really nicely (pretty please with cherries on top) that you please watch where you are going with your belongings and that you are not collecting strangers (who just might happen to be afflicted with a hidden condition that doesn't like your thoughtless actions).

There ends my rant for today

This seasons latest fashion statement

2008-11-05T21:11:00.003+13:00

Positively chic!

Its time to celebrate...

2008-11-05T20:15:00.004+13:00

...if only I had the energy!

Finally the university year has come to an end and my last exam has been completed, it was touch and go for awhile whether I would actually make it this far.

After the last post I decided to focus my energy on getting through my exams, supposedly in one piece but life had other plans. I certainly didn't have any spare energy for updating here, I decided that I had more important things to think about.

Life is always exciting when you wear my shoes lol, I am currently sporting a very dashing green cast on my left wrist (not my dominant hand thank goodness) which may or may not be immobilising a scaphoid fracture...no definite fracture has shown up on x-ray as yet. Moral of the story? there is no moral-though I'm sure Jess would say it was dont use the stairs!

I caught my foot and superman dived down some pretty majestic concrete steps less than 2 hours before my first exam...my friend took me up to our paper coordinator and she patched up my dripping knees after having a hard time finding anything big enough to cover them. My stupid wrist was really sore but I had an exam to sit and no time to investigate so the trusty bunch who watch over me, dressed me in my lab coat, put my glasses on and helped me up the DR stairs.
By the time we had finished our 8 station anatomy exam (3 and a half hours for me) it was too late and I was too tired to think much but promised if my wrist was still painful in the morning I would get properly checked out (all the while hoping it would not).

As aways seems to be for me, things were not simple in the morning, so I duly took myself to be checked and several hours later (after being sent for x-rays) emerged with a plaster cast for my troubles.
I have since had practicals (boy were they fun with an arm in plaster) and then more x-rays and more indecisiveness and am now sporting this funky green fibreglass cast for yet another 2 weeks of frustration!

I'm am very relieved that I made it through my exams, now comes the waiting part to see if I made it to a pass, I am hoping I did but a bit worried about the anatomy exam (I was in quite a bit of pain because of the fall) and also the pharmacology exam but for now I am going to throw my worry away and enjoy my days of rest before I go back home!

Things I learnt today...

2008-10-13T20:58:00.004+13:00

I hate old buses.

I still look like a child (both bus driver's were surprised when I said that I actually wanted an adult fare please, not the child one they were offering).

I helps to turn on the stove if you want to cook something.

I also helps to turn down the right stove plate when the pot is continuing to boil over (turning on the one beside it that has nothing on it and then turning it down doesn't count and getting frustrated about it doesn't help either).

You cant cook apples in the freezer.

Orange juice in mashed potatoes is probably not a good idea.

You actually have to pull down some clothes before sitting on the loo (and yes I did realise before it was too late thankfully).

My first exam actually starts at 2.30pm not 9.30am on Wednesday, if a friend hadn't told me today I would have been very early lol!

I think I am still over tired...and anyway that is more than enough learning for one day!

Wake up call

2008-10-09T22:17:00.004+13:00

So sometimes its good to listen to advice (and like all those warning signs your body is giving you...)

You guessed it right?

I'm sure you can all tell this story is going to end up in ED...like all good stories lol.

So I have been pushing myself lately, with exams coming I've been feeling like I need to step up the pace a bit. Got to Wednesday and I felt totally exhausted to the point where I didnt even care if I missed my exams and my head felt so empty. The girls invited me to go up to the pool with them to relax in the spa and I decided to go. Well I knew I wouldn't get any study done and figured the relaxing would help me sleep a bit better since I havent been sleeping well lately because of the pain.

We spent some nice time in the spa and then its time to go home, it was decided to take the lift down to the ground floor rather than the stairs (good job too) and apparently on the way down I collapsed, bouncing off one of the girls before hitting the deck.

I didnt come round to my name or being tapped or anything apparently and the pool medic had to be got, it was good that I wasnt actually dying as apparently his equipment wasn't the best! He decided after a few minutes that an ambulance needed to be got (I do see that they had no choice really).
I was dead to the world, literally...the ambulance officer stuck me with IV's, apparently it fell out but I have the holes and brusing to prove it lol, and also stuck an oropharyngeal airway in-all with no pain response (and I HATE IV's) or gag reflex I was that unconscious. I got told they were pretty impressed! (A typical faint can get you pretty bad service from the Ambo's). They worked out that I must have been out for over half an hour before I started to come to just as we were getting to hospital.

I got told that they were ok with me, sort of took note of the fact that care needed to be taken of my foot but it was hard to get me out of the lift an unconscious dead weight, and the doctor in ED was nice even though she was very firm about a few things.

I'm ok I guess, feel pretty shattered still and really sorry for causing so much trouble but I am so MAD! I have been told I am not allowed to drive-so that means no scooter to uni, until I am cleared by neurology. Whenever that may be, I just have to wait for an appointment.
Its kinda scary but I'm sure it was just because I am so tired and my brain just switched off since I wasn't listening to it but all the same it wasnt a very good time to loose my independence.

I just hope I make it through the next few weeks and then I will be able to recharge my dead battery.

Last week of class

2008-10-07T07:23:00.002+13:00

Its the last week of class before this years final exams...I have my first (Anatomy) starting on the 15th of October and I will be all done by 1pm on the 4th of November.
I cant quite believe that I am at the end of my second year already, time has gone by so fast and I have to say I am really proud that I have made it to this point. My OT came to see me the end of last week and he said how great it was because at one point we weren't sure that I really would be able to get this far.

I'm scared about my exams but this is ok. Its better to be a bit scared about exams than being too confident (although I was so confident and actually stopped studying for one of my chemistry exams a few years back and ended up getting 98% however that works).

I am studying as much as I am able, though yesterday I freaked a bit and didnt take any breaks apart from lunch so when I finally got home for dinner I was knackered and couldn't do anything more. Today I am going to be more responsible and pace myself a bit.

Oh and I got my second to last assignment back yesterday with a grade of 83.5% (marks ranged from 44-90%)

(hope I dont sound like I'm bragging cos I'm not...its just I feel so happy about it I have to share lol)

The body is way too complicated...

2008-10-05T19:09:00.003+13:00

I'm not getting very far with my study so I've come to the conclusion that the human body has too many complicated structures (since I've spent all weekend doing or at least trying to learn anatomy) and we need to get rid of some of these muscles...do you think anyone would notice?

"Take it easy"

2008-09-28T21:30:00.003+13:00

That is what I have been advised to do, I wonder if he thinks I will?

I went to my follow up appointment with the orthopaedic surgeons and it went how I expected it would. Just see how things go and everything should be fine soon. I'm not too fussed on the young registrar's idea of a neuro examination, he said the strength in my legs was fine and I know very well they are weak but that's nothing to get hooked up on.

He tried to get me to stand on my right foot barefoot and only when I proved I couldn't did he come round and help me out. I'm sure I may have in my write up "difficult to assess due to inability to comply with examination" but in all honesty how am I supposed to walk on my heals and then my toes in barefeet when I displayed that I could hardly walk let alone be fancy about it.
All visible bruising has gone but I am still very tender and walking, sitting etc are still quite painful as well as still having the horrible feeling of wetness.
The verdict was that I probably bruised the hell out of everything and it will take a few weeks to settle down but I am assured it will soon. But if things start to get worse I'm to go back and see them as they want to keep an eye on me.

I'm still getting over just how nice everyone is being to me, the nurses, the doctors, even the consultant asked me how I was on my way out. I'm so used to having to justify myself that I cant believe how caring they can be in the public system. So now all I do is wait and hope that they are right and things settle down soon-fingers crossed.

A little pep talk...

2008-09-26T17:39:00.004+12:00

So maybe I was too hasty in the harsh judgment of my performance the other day...
...but then maybe this is the upside of being overly harsh-a surprise when the grades come back?

I knew grades were out before I got home but I decided to cook dinner before checking them, I told myself I didn't want to know how badly I did anyway. Ever since Tuesday I had been taking turns picking my performance to pieces and then trying to forget it even happened and it wasn't helping at all.

So imagine my surprise to find out I had passed both the neuro and the musculo practicals!

I got 55% in musculoskeletal, the one I thought I had totally messed up and didn't deserve any grade and then I looked down and couldn't believe my eyes...100% for neuro!
I am so happy (once I stopped telling myself they had felt sorry for me) that I did so well and with the combined grade I did better than average.

I CAN do this, even though it is tough, even though I have my rough days, even though I sometimes doubt myself...I am strong, I AM going to get through and I am going to be proud of my achievements against all odds.

My OT came to see me today and he reminded me not to compare with the past and to celebrate how much an achievement it is in itself to have passed and that its amazing that I am doing so well surviving the stressful parts. He said to look ahead to the future with confidence that I can do what I set out to achieve, and you know what?

I think he may just be right...

Chop...

2008-09-23T21:08:00.004+12:00

So after my pathetic performance I decided to do something nice, something big to take my mind off things...I got my hair cut (and before you ask to see it Jess, I have taken photos just for you lol).

I have been thinking about this for awhile, I wanted to do something drastic, something that showed that I didn't care about anything but I was leaving it till after my last clinical in case things went a bit haywire.

So far I like it, I can still tie it up if I need to (I was contemplating even shorter than that) and I think it looks pretty ( so did the hairdresser and the lady waiting with the foils)...only downside is I think it makes me look younger again, something I have been trying to avoid...oh well. Tell me what you think!

Bad day

2008-09-23T20:50:00.003+12:00

I'm not having such a great time just now, still got all the symptoms from last weeks drama and its annoying to say the least (not being able to pee when I feel I need to is rather uncomfortable, and dont even mention the feeling like I have wet myself lol).

I had a practical test this afternoon and because of all the other things happening I cannot focus on much at all and my short term memory is even worse if that is possible!
I totally screwed up the first half-I think I even invented a new name for a part of the human body and I am surprised I didn't cry right there in front of the examiner...what makes it worse though is I have been practicing and knew what I was doing, something happened that made me completely forget everything I knew right when it mattered the most.
I think I did slightly better in the next half and hope that this will bring my grade up to a hopeful pass. If not I shouldn't fret, it wasn't worth overly much and shows that I need a strategy in place for this kind of thing. I have about 3 weeks to sort myself out because final exams are that close!
Yikes!!!!

Developments...

2008-09-18T19:53:00.001+12:00

Its been a hectic week, ended up in ED twice, had assignments due and all sorts, I'm finally feeling like I have a handle on things again. I thought I would write about one of the trips seen as it relates to my last post.

I spoke to my Mum about my fall down the stairs last week and she told me to see a doctor and get it lodged with ACC in case I had trouble down the track-which was sound advice, if you don't lodge you can have a bit of trouble getting help later.

So I went to Student Health, explained to the receptionist and she put me in with a nurse right there and then and the nurse would decide where to go from there.
Explained to nurse, that I just wanted to get it lodged with ACC but she said I needed to get checked out by a doctor and she had a free space in 15min so I should stay because the next free one wasn't till the next week (Student Health are terrible as far as trying to see a doc quickly most of the time).
I waited as the doctor was running late and I worried about being late for my anatomy lab but that was the least of my worries!

I got in to see the doc and explained yet again, why I was there, that I'd had this fall, had these strange symptoms and just wanted to get it on ACC. This is when the fun started...

Neuro symptoms require Neuro examinations (dont you just love these? especially when you have rsd) so it was time to go through fine touch and pain sensation and reflexes. Surprise surprise I had positive results in all three tests ( and more than just your usual rsd altered results) so this made things tricky.
She then cancelled all her other patients who were after me (I felt rather bad actually) and tells me sit tight while she rings the Ortho registrar at the hospital...I'm thinking now how late I am going to be for my lab and will I have enough time to get it all done.

After her talk with the registrar she explains that they think I possibly have Cauda Equina syndrome (dangerous compression of the nerve endings at the base of the spinal cord) and that I need to have another test done and it will either have to be done by her or at the hospital by 'person unknown'. So I reluctantly take up her offer and let her do the couple of other tests (I wont go into it here, but I had some other symptoms too) which also picked up positive signs (boy was I mad about that).
After that she had to sit down and write everything in a letter for me to take to the ED and advised me to go straight there and take a taxi-its 2 blocks down the road from Student Health and I was supposed to be doing a lab!...she dryly stated that she didnt think I would be getting much work done that night!

I walked to the hospital (after a small detour across the road to the dissection room but dont tell her) and checked in and sat down to wait. It was so so busy I felt like going and doing my lab while I waited but by that time there wasn't enough time left so I thought it was best to leave it. After not much time my name was called-I was amazed how quick I was called as there were so many patients and I could see how serious some of them were.

Now a subjective and all the neuro tests start again, first by med students who were very surprised at my lack of ablility to tollerate them on my rsd side and my lack of feeling on my other lol. Next the doctor under the registrar comes in and we go over it all again but more through and with added tests and I confuse him in places but we sort it out in the end lol.

Then his boss the registrar comes in, he just listens to his younger doctor and I make sure it is correct. He then does yet another neuro exam (without the test the student health doc did) says he doesnt think it will be Cauda Equina Syndrome as some of my symptoms dont fit. Which was my thoughts exactly, thats why I never went to the doctor in the beginning-I couldn't make all the weird things fit together and I didnt want to waste their time.

He then explained that I wasn't wasting their time, that this was very serious and even if it turned out to be ok, we needed to check it out. He then went to ring and talk to his boss the consultant! He suspected that I would be allowed to just go home but had to make sure.
He comes back and says that I am not allowed home until I have the test the student health doc did again, apparently since I had positive findings picked up, they need to redo the test to make sure...I was so not wanting to go through that again. But I knew I had a moral obligation to myself to let them complete their tests and he did say I could go once it had been done so I agreed, among other findings, I have loss of sensation in the complete saddle area-the area I keep feeling wet in.

Next thing I here is "I owe my boss a coffee, he was right" and I dont know what to think, all I want to do is go home and get something to eat (its past 9pm by this stage and I havent had anything since lunch).
DR registrar says it was good to do them again as he got the same result as the Student Health doc and now needs to ring his boss again to see whether they want to to an MRI that night or wait till the morning (if they did it then, they would have to call someone in to perform it...), his consultant says he wants the MRI done now and not wait till morning so they call up a tech to come in. I feel so bad about taking up so much of their time because I am sure that I am fine and they are wasting time and money on me. Next thing that happens while we wait for the MRI to be ready, they start sticking IVs in me, to get bloods and ready just incase I need surgery! By this time I'm just starting to freak out slightly and wishing I never went to the doctors in the first place. After they had got the lines in, I'm shipped off to x-ray and then up to the MRI suite. It took less than half an hour from when the call was made to when they were ready for me, I have never had such fast service in the ED before! I kept being told how lucky I was to get an x-ray so quick as people were lining the corridors waiting for all sorts of things and here was I getting star treatment.
The MRI was clear for any compression, I felt so relieved about that (and even more bad that they had spent so much time with me) so no surgery needed and I was finally allowed to go home. Again the registrar assures me how important it is to investigate these things as you can be left with permanent damage and I was told not to be so appologetic. They are not sure what is causing all my mysterious symptoms so have given me a follow up appointment for next Friday and I can keep it if I want. I certainly found out just how big a 'red flag' the 'cord signs' are we are taught about are, but I'm not sure this is the way to learn things lol!

I'm not sure as yet if I will keep the appointment, I'm still having the symptoms just as bad but will wait and see a bit closer to next Friday before I decide.

Nothing like a bit of excitement though!

Symptoms...

2008-09-09T21:48:00.002+12:00

So "one of my numerous falls" last week has created additional, well I suppose I call them 'additional question marks'. They are things I'm not too sure if I should be concerned about or whether just to wait for them to get better and go away...

I fell down the hard med library stairs because silly me let someone else use the handrail. I am starting to wonder if I am ever going to learn or if I am just going to continue doing this till well till I cant do stairs anymore.

I have an amazing bruise over my ischial tuberosity, looks just like I have drawn with purple and black vivid on myself, I haven't seen such an intense colour in a bruise for a very long time-what a shame its in a place I cant show it off. Down side is, I am having a hard time sitting, walking, turning over in bed and bending down to do things, stretching and pressure are big no no's and creating their own set of problems.

And the next thing is rather disconcerting (and embarrassing too)...everytime I have been sitting down and go to get up, I feel like I am all wet, you know like I have wet my pants or something! Honestly I haven't, but it feels horrible and I have to keep checking to make sure it's not real as it feels so weird. I'm not sure what to do about this if anything, I guess it will come right, its signs of nerve involvement of some kind I suspect but whether its something I need to get checked out, I have no idea!

Things are certainly fun at the moment and thats for real.

World Physio Day 08-09-08 Active-for Life!

2008-09-08T18:30:00.005+12:00

One of our most important roles is to encourage people in pain and afraid of moving, to become active.
We do this by teaching how important keeping active is, education is an amazing thing and once someone knows how important it is to do something and how it may benefit them, they are more inclined to try. Also we may need to help them get over their fear, fear avoidance is such a big thing and largely unconscious driven so it is particularly hard to retrain ones thinking in regard to keeping active when it may not be so easy. Having a person with appropriate knowledge guiding your rehab and providing reassurance has a lot to do with creating a positive outcome.

For people in chronic pain this is especially important, we tend to forget how important it is to keep going when all we feel like doing is staying in bed, but the extra effort we put into being active goes a long way in keeping us as healthy as we can be.
Motivation in this situation can help tremendously and as a physio to be, I look at this trait as one of the cornerstone attributes a physio must have and something I must never forget to use, I keep this alive and healthy by using it on myself everyday to get out of bed and start the day!

Keeping active makes for healthy lives and happy people who are able to be an active contributing participant in our society.

Lets be Active-for Life!

Parting is such sweet sorrow.

2008-09-07T20:09:00.013+12:00

Last weekend was the last time I will see my best friend for probably a good 2 years :(
She is flying out to London 3 days before my final exam so I am going to miss catching her before she goes and I am sad.
But instead of dwelling on that thought, we spent our last day watching movies (and sharing tears over some parts) and then going out to dinner at a nice place that does good deserts (I've always been a sweets person). The last time we went there together was just before she flew out to Japan for a 6 month period and it has now become our restaurant of choice for such occasions.
We have been best friends for a long time and even though our paths are so different now, we are still there for each other and even though sometimes the communication is a bit dodgy (I find it hard to find the time to call etc and half the time when I do she is out!) we know we can always count on each other just as we always have done.

I am going to miss her, infact-in a way I already do and she is still in the country and I think that has had an impact on this weeks pain levels. Once I get over the grief I feel just now I think I will start to get back on my feet but for now I am accepting that emotions have an effect on our pain levels.

These are some of our (ok...my) crazy photo poses from our last night...

Gentle Reminder...

2008-09-04T21:06:00.003+12:00

Today I was reminded that the world is still full of goodness. How did I ever think for a second that giving up was an option?

I bought a new pretty top with some money I got given for my birthday way back (its a cute summer top I've been looking at for ages and they finally had a sale).

I spent a rewarding morning in a rest home with patients who at age over 85 are still full of life and an inspiration to anyone wondering whether to keep pushing on.

And I have been honoured with the offer of becoming a God mother! A wee baby is on the way and I am the luckiest person in the world and feel so humbled that I have been given the honour of becoming another precious baby's God mother.
Baby is only 10 weeks, due end of March so I have plenty of time to prepare some special gifts and watch over Mum to be. We had just recently started aqua fitness classes together and these are especially good for expectant mothers so I am going to make sure we continue going as it will be so good for her.

How could I have ever doubted my life and thought I was not worthy? I was beginning to loose all my confidence and self worth but now I feel like I mean something, that I am important and can make a difference-God bless life!

It keeps getting better...

2008-09-03T20:08:00.002+12:00

So today somehow things kept getting worse, for some reason I am not coping with the pain at all and it frustrates me that I am not able to cope when I think I should be able to. I have tried so many things this week, deep breathing, thinking of other things, moving, nothing seems to work and I'm not sleeping which doesn't help either.

After one of my numerous falls this week I have stuffed the lead of my TENS machine and it stops working as soon as I put it in my pocket. This has had a huge impact on my pain coping strategies and not helping at all. Why does life have to be so hard? Is it not hard enough already?

I ended up in tears (yet again-I lost count today) in one of my lab tutors offices. She was lovely, TENS are her thing and she knew just what to do, rang a place to help me order a new lead (will take 2-3 days to arrive) and set me up with a temporary one that is not as good as mine but hopefully will be better than nothing.

I went to lab after having calmed down a bit but I had such a headache and couldnt focus on the complexities of the shoulder joint, hopefully tomorrow I will be able to concentrate better.
One of my friends kept accidentally kicking my foot under the table and every time she did I jumped and cried out in pain, it just wasn't my day!

All I can hope for is that I sleep tonight and am able to get through my clinical placement in the morning, I am dreading it as I have to disclose my "risk of falling" and I really dont feel very comfortable with how to do it without making it a big deal. Why does life have to be so complicated?

Not a good start...

2008-09-01T18:07:00.000+12:00

First day back at uni and things weren't going so well.

I couldn't wear the pair of shoes I was going to wear, luckily another pair felt marginally better.

I left important information that I had specifically searched for behind at home-second bad thing.

I couldn't sit still in class this whole morning and had to remove the offending shoe as soon as I sat down.

By the time physio balance program appointment came around I was limping badly...

I freaking FELL OVER during the first 5 minutes of physio (so maybe I should be more honest about pain from now on...)

That was the end, tears poured forth and life was temporarily not worth living.
I was in so much pain I was useless and so frustrated that I was wasting a whole physio session.

Lovely physio came to the rescue...she found me a mirror so I could "compose" myself (no I am not vain, it was to do some mirroring to calm the pain down a bit) and then we rescheduled for in two weeks time, this time a morning appointment so should hopefully fare better.

I came home early as we don't have specific labs this week and I was not able to think about the assignment I was supposed to be getting on with.

Day starts to get better....

I get a letter in the post from my med student friend with a special gift : )

I get to chat with a friend in the States who also has RSD and we talk about random things to take my mind off everything, sometimes all we need to do is be able to talk to someone who understands without feeling guilty that we are forever complaining.

Oh the joys of life

I'm a Proud GodMarmee

2008-08-31T18:27:00.000+12:00

Here is a pile of cuteness I snapped last weekend, I cant believe how fast my baby has growed up!

And also a snap of one pair of shoes I got her...

Sunrise

2008-08-29T23:00:00.000+12:00

Here is a little poem thing I thought up today when I was sick of study...

Sunrise

Bright as the day she dances into the room
Instantly the air is lightened with a sweet fragrance I cannot name
She floats past me though I do not catch her shadow

I wonder who sent her and how long she will stay.

Gazing through half open eyes, I catch a glimpse
The sparkle of her smile and the rosy glow of her cheeks warm me
She is a happy thing without a care in the world
How my spirit welcomes her gift of hope in life

As I lay here, her warmth slowly increases
I bask in this happiness she is showering so generously
Her power to awaken me is fascinating
I hope she will whisper the secret to me.

Is she calling my name? I start to get restless
I question out loud, yearning to know, but her words are softer than wind
Though I cannot hear, I feel in my heart uplifted
I promise to her that her gift will be treasured.

Smiles, Butterflies and Happiness

Emerging from the shadows....

Where I've been...

A New Year brings.... Gratitude

Was it really 4 years?

Looking back...

When the price for not doing is greater than the price for doing

Summer break kinda crept up on me...*Surprise*

Yes...I can do it :) (and other matters)

I'm not freaking out...I promise!

When you have to, you find you can...

Its one of those days...

Home on 'break'...

"CRPS won this week"

An exercise in human observation...

Bowling can really shake a girl up

When it all feels too hard...

My bonny wee lad

Sydney trip...

Its an update...

My Mum is an Angel and home is a piece of heaven

If wishes were horses, beggars would ride...

An RSD guide to getting through exams

Please grant me the strength to get through

I've been tagged :)

"Why are you trying so hard to fit in when you are born to stand out?"

Umm, yes I do know I'm just a bit special...

She's on my side

Offer accepted

Superhuman I am not...

I hate hospital...

Part 3- Love is...

Water is for drinking, not breathing

Spread the Word!!!!

Part 2 Give me Strength

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Part 1 Have a little faith in me

Say it like it is...

Spreading like wild fire...

Nothing like a good kidnapping to set the world to rights...

DO NOT ask me how I am

What a day

I live pretend...

RANT...My life is a soap opera

Because your're worth it

Happy Birthday Butterfly!

Getting back up.....slowly

Pain and exhaustion... a bad combination.

More dreams coming true

I'm a 3rd year!

Untrue

My brain passed the test!

The importance of friendship and support.

Hydrotherapy update!

A look at acceptance and chronic pain...

All dressed up...

All danced out

Crazy fun here I come....

The good news.

I'm ready to cry...

Situation resolved

A+ for dumb idea

Two schools of thought...

Tips for a better life...

I've been tagged...

Its just too hot

Worth it...

Through the eyes of the year

Say Hi to Mel!

Letting out the Hurt

A Hug from Me to You...

Christmas and tradition

Hydrotherapy week 3 (belated)

Grant me patience...

Week 2-Hydrotherapy

Feel the burn...

Sick of being sick...

Stupid wrist...

Day 2

No-one said this would be easy....

Summer break kinda crept up on me...Surprise