Through the eyes of the year

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!

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

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...

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

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)

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...

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

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...

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...

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...

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

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....

...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!

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!

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...

...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

Positively chic!

Its time to celebrate...

...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...

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

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

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...

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"

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...

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...

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

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...

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...

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!

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.

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...

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...

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...

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

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

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.

Progress

Its the best thing in the world to be told that someone is really pleased with your progress...it makes all your hard work worth it and sometimes in this journey that is crps, hard work seems like a waste of time.

My Mum drove me out for physio the other day, every time we say that we went to Kaiapoi for physio people look at us strangely and my auntie commented that it was rather a long way to go from Dunedin hehe-at least my Mum didn't have to drive all that way! But it is worth it, I haven't found anyone else who works the way she does and she has a totally different approach from the sports/rehab/manual physio's who are the norm.

She totally understands people in chronic pain, never makes you feel like you somehow brought it on yourself and makes you feel more in control of everything.

I am coping much better overall on the new med combination and combined with the tens and mirroring I get through most days. I have my days (as you all know) when despite all this I do not cope well but this is no miracle cure, just a management plan. I am getting out and about more and have a bit more confidence in myself though I still have a long way to go on this.

She has tweaked my balance program a bit so that I am able to do it without constant flaring (I have been very slack in doing it because of the immediate painflare) so hopefully that means I start progressing with this too.

She seemed a bit concerned about the fact that I still have quite prominent swelling from my hip surgery (last surgery was June 07), I asked her about the pain along my incision and she thinks some will be due to all the swelling. So now I have to see if I can wear some fitting leggings and see if the light pressure helps at all and go ahead and get a steroid injection but to get my pain doc to do it rather than my ortho surgeon.

I also have weak hip external rotators probably also left over from surgery and the fact I never make this leg do anything. And you know she said it was pointless to specifically try and strengthen them, that it is functional movements that will help this muscle so I need to concentrate on standing up better initially and I am doing mirror movements-apparently it is proven that mirror movements will strengthen a muscle on the other side by 30%!

When I come back home after exams in November she is going to take me to the pool and give me a hydrotherapy program!
So all in all, a very productive visit.

Pain please go away...

I can't think, its way past my bedtime and I should have completed the written notes for a presentation I am helping give tomorrow...

My head is shouting pain pain PAIN and I need it to be unraveling the complexities of MS...

What on earth did I do to create this flare? and all I can think is-what will I do tomorrow if I'm still like this and I am supposed to be presenting my part of the talk? how can I stand up in front of my class and not cry because it hurts that much...

But I'm forever looking on the bright side...one more day till mid-semester break! and one day more till I get to play dress up and photo shoot with my god daughter and her family before I head home to my own family!

You are my Sunshine

It was such a beautiful day today, the hard frost fulfilled her promise of a clear blue sky and warm sunshine...

I enjoyed walking about today (despite the fact that I am paying for my actions) between lectures etc and labs, I went and did a spot of shoe shopping and I had a load of fun!
I didn't get shoes for me ;) but I got some pretty little things for my god Daughter (she is 5! I really cant believe how quickly she has grown up) and if her Mother says yes, I will put a picture up of her in her pretty little new shoes...I am a dotting god mother and love having someone to spoil and buy pretty things for.
We have fun playing tea parties and I love playing with her soft hair. When its nice weather I go round and play with her and her brothers outside in the sun, and in summer we go to the beach and have loads of fun in the sea. She is lovely and asked me to dinner tonight-how cute is that!

Life goes on...

I think I am slowly coming out of my funk. Its taking me a few days as I had really wound myself up in that time. Its amazing how much pain flares when you start stressing yourself out with stuff that ultimately doesn't matter...
I think I just needed to get this assignment over with to start to feel better, as soon as I printed it off I felt such a relief. Why do I do this to myself? I had so much time to get that assignment done but there aways seemed to be something even more important to do so it just got forgotten.
A HUGH thank you to Maria for offering to help me! We are on opposite sides of the world but she offered to lend a hand and I was not too proud to accept. She proof read and changed some composition for me so that everything flowed better, and just knowing that someone had gone over it for me helped me calm down enough to complete the rest in reasonable time.

I think I am ready for a break, thank goodness I just have one week left before my week off! I am going home and I cant wait for my little bit of breathing space! (even though I have yet 2 more assignments I have to do in that time, at least I don't have classes as well)

Lets just hope I get through this week relatively quietly without any mishaps or accidents...

Emotional breakdown

I am tired, I hurt, I am way behind in my uni work, I have 3 assignments on the go (though I actually got another one finished and handed in a day early) and am supposed to be studying for a mid-term. I also have to research some stuff for a lab presentation we have to do next week.

As well as "reflect" on each days learning...what do they think we are? machines? Everyone was a bit surprised at the speech we got about being adults and not needing to be told what to do and that we are supposed to be putting x number of hours in a week, we are, honestly and that work will be done, just not necessarily the night of the same day-there is that little thing called priority!

All I want to do is sleep, I mucked up an appointment slot so badly we couldn't even find it for any time and so now the next available time is next Wednesday. I really need to see this person like a month ago but there is no point seeing someone else cos she knows all about me so I just have to wait. It was me who put it off in the first place though so I only have myself to blame.

I knew this was going to be hard, everyone told me it wasn't going to be easy but I sure didn't think I would ever be saying it was too hard...
I'm barely holding on, I'm not sinking just yet, but I'm not sure how long I can hold on. And I hate having to admit that I need help, all I want to be is normal like the rest of my class and able to get through the day...Is that too much to ask?

...oh make that-I am in pain (not just I hurt) this sucks.

So, sorry this was such a sucky post...I'm going to put my sorry self to bed and hopefully wake up a happier person tomorrow, or maybe not waking up at all would solve all my problems...

Rome wasn't built in a day

Once again I find myself being reminded to be patient. Why is nothing ever a simple fix?
I so very want to be steady on my feet, to not need to watch every step I take...that I forget how much hard work it will take to get me there.

My appointment at the balance clinic went well, I have 4 exercises to do but according to very detailed instructions from my rsd physio, I am to start by only doing them once a week till we know they don't cause pain flare ups. I was supposed to say as soon as my foot pain increased substantially but I wasn't totally truthful-if I had, I would never have got past standing with my shoes off.
Because this is to challenge both my proprioception and vestibular system it is best to do them in bare feet but as soon as I stand with no shoes on the pain gets really worse so I just pretended as best I could that I was fine.
I got 4 things to work on, they are all really quite easy things but its amazing how hard I found them to do, I was really frustrated with myself at points, with just how difficult I found it to comply!

After my appointment I started feeling really weird and dizzy and shaky and my head was pounding, I don't know why-whether it was the balance stuff or just random but I ended up fainting in my class that was after the appointment. I am so disappointed with myself over this...I have been trying so hard not to have anything happen during classes, in fact I was half out the classroom door when it happened (so rather embarrassing as well). If only I had got to the bathroom before keeling over, then no-one would ever have known. As it is, the undergrad dean came in and found out (she would have anyway since the class and lab tutor saw) and I felt so bad, I really don't need to give them any more reason to tell me I may not be well enough to carry on.

Next step-work on that thing called balance...

I've finally got to the point where my CRPS pain is more under control, well thats how I like to think of it anyway. I take my meds like clockwork, throw in another one when I need it, use the tens and do a bit of mirroring. Providing I dont do too much pretending (that I dont have crps...) things are much more bearable mostly and I'm so thankful for that.

So now I am hopefully going to start work on my balance, tomorrow afternoon-between anatomy and a cardio lab on chest markings I have an appointment at the balance clinic and is it ok to say I'm excited about it?

I have been feeling rather down lately about the whole lack of balance issue, I had a meeting with the undergrad dean and she brought it up...how important it is that I don't do certain things, how important it is that all my supervisors know...especially because of the consequences if anything were to happen. I see that now, it is more than just my safety issue, it is the fact that ultimately my supervisor is responsible and can be held accountable. I dont want to put anybody in messy situations just because I was to proud to let them know I am a hazard. But at the same time I feel like I am going to be left out and not allowed to do some things just because it makes it easier for everyone else, I don't want to be treated differently because I think it will turn into a disadvantage and I will miss out on important things.

I'm hoping that the physio will give me a really good rehab program to get me back on my feet in a much more stable position and stop me falling all the time.

I even have a little list of 'patient centered goals' like we talk about so much in class.

I really want to be able to feel safe on my feet without my shoes on
I want to be able to go down stairs without having to totally concentrate on what I am doing
and stop falling over nothing and ending up on my face!

At the moment I can compete with the children over how many bruises I have all over the place-my poor knees are covered!

I just failed "Learning to say NO 101"

I'm sure I wasn't quite that bad as a 5 year old...though I do know I was a very messy child and drove my Mum mad.

I spent all of yesterday afternoon cleaning one of my cousins children's bedrooms up. She sent me a message in the morning asking if I would like to go and give miss 5 a hand as "it was turning into a headache for her", I don't blame her wanting to get out of it-it took me hours and by the end I was exhausted. All I wanted to do was collect up all the junk and throw it out but it wasn't my place so instead it is all sorted out.

I felt too mean to say no so instead of putting me and my nearly due (not nearly close to being done) assignment first, I said yes and now my assignment is giving me a headache - only problem is I cant call on anybody to do it for me lol.

After a lot of hard work and 'boom and bust' (against the advice of my OT) my anatomy assignment is almost done, just the last section to do and to write up the reference list and I'll be on to the next one but now I'm both physically and mentally fatigued.

Why wont I ever learn?

Out and about...

I went to an aqua fitness class the other night! (and I do not hurt extra anywhere)

Our public pool was having an open night, you could get in for a gold coin donation and take part in a fitness or spin class. I have been wanting to start doing something physically active for ages but really hadn't found anything that sounded like it was do-able, this sounded like something to actually try out.

I went with a couple of my cousins and my Aunt and we had a great time, I was so excited to be going and I had so much fun and even though I was so tired beforehand and didn't know if it was a good idea I felt so much better afterwards! I was so proud of myself-I kept up with the tempo and was able to do almost everything.
I'm really hoping that we are able to make this a regular outing, just need to work out if we can go to any of the time slots they have the classes normally-I really hope we can!

And today I am going to try out a dance group, I am part of an International folk dancing group back home and I really miss not going through the semester. Well last week I found out about a similar group I think, so this morning I am going to go and say hi-wish me luck!

Dratted Hip...

So, we have been doing 'hips' in classes the last 2 weeks, anatomy is fine-I knew quite a lot already lol. Lectures are interesting, I was especially happy to hear labral tears were big enough to be mentioned as possible hip pathology-no FAI but at least its a start right?
But when it came to practical labs I started having problems...
Last week I let my partner have my left (supposedly good un-operated hip) hip to practice on, it wasn't too happy and the quadrant test was the last straw. It still hurts a week later.
So this week I thought I would give it a rest and let my partner use my right (surgically now 'good' hip) hip instead. First comes me being embarrassed over how little ROM I have, both passive and active (um like not even 90 degrees active flexion...) so I mutter something about having to get back to work on it. Then she does some lateral transverse glide accessory movements and I begin to wonder on the wisdom of letting anybody touch it after all. Trade-in anyone?

This probably sounds trivial, but for a while now I've been getting really stiff as the day goes on, and start getting pain round my right hip joint and down my anterior/medial thigh to my knee. This seems different from the hyperalgesic patch but I've haven't really taken much notice. It is also slightly different from the FAI pain-well at least that is what I'm telling myself.

Is this the osteoarthritis that was noted, coming to catch me already? Or just a case of paranoid physio student diagnosing self with the pathology of the day syndrome-lol!

My poor foot...

My foot regularly turns purple/grey and I'm quite used to that but recently its abnormal appearance has been added to...

I HAVE CHILBLAINS! and every time I semi get rid of one lot I get more again. At the moment I think I have them on all but one of my toes on my crps foot AND IT DOES NOT LIKE IT ONE BIT : (

Its making shoes even harder than usual to wear at the moment as they rub all my poor swollen toes and the skin is so thin and dry some parts are starting to bleed on me. Its just so cold here I don't think I can help it, I think my hydro placement didn't help as I was going from freezing cold to a very warm pool. I cant wear proper socks, just the little ones that don't go over your ankle-not the best attire for winter but what can you do.
I'm looking forward to them going away for good-hurry up warmer weather please!

Learning

Sometimes I feel that everything gets harder the more I try,
That nothing I do will ever get me where I want to be.
I want to scream to the world that I didn’t choose this life,
I don’t want to go on forever like this; I just want to have fun like everyone else.

I look back and things used to be so easy, why did it have to all change?
I have no answer to this question but how would that help me anyway?
Half of me wants to show everyone how I feel so they know just what its like,
The other half just wants to hide it all away so no one knows,
I don’t like getting treated differently.
I wish I could just show them that I have not changed, I am still me and I have feelings.

Then I look around and I see people dealing with what life has thrown them,
Bigger obstacles than I have to deal with.
They don’t show the frustration or anger I’m sure must be a reality to them,
Instead they are here, helping me learn not to say “I can’t” or let anything get in the way of my success.
Do they still feel doubt but unlike me, have mastered the art of hiding it away like I so desperately want to be able to do?

I am starting to see now that if I had one wish it would not be to go back to how things were, I am thankful for all the lessons I have learnt and still need to learn.
There is so much I could never understand had I not been given this path.
I am slowly learning that I am tougher than I thought and that even though many things are not easy this doesn’t make them impossible.

I have started on the journey of realisation and greater understanding.
Learning is not something to be taken lightly though sometimes I wish you could learn everything out of a book.
Instead we must learn by living and by experiencing and sometimes this is harder than you might think.
Life is what you make it, not what it throws at you and I am not one to be beaten.

I am no hero, but victory is all the sweeter when you have to work hard to earn it.

Balance for sale?

Anybody know where I can buy some balance (well more to the point some good balance)?
I have 3 weeks to improve my balance before my next placement so I need some fast remedy!

I had the unfortunate luck to slip down the steps getting into the pool on Thursday and then after, when we were putting the equipment away, I slipped in some water by the pool side. Now after the first slip into the pool and I had surfaced and recovered from all the water I was choking on, my clinical tutor asked if I was ok and if I slipped because of my foot and I answered yes. She said she knew about rsd when I asked her awhile back so I thought everything was fine.

On Friday I get an email from my paper coordinator at university saying that she had received an email from the clinical tutor saying that she was concerned that I was unwell and wasn’t sure why I might fall.
And then that it might be a good thing to forewarn my next clinical tutor in my next placement that "I am at risk of falling".

Give me a break, all I did was slip in some puddles of water and slip on the step into the pool and she even asked me if it was my foot-she "wasn't sure why I might fall?" I thought she said she knew about rsd, obviously not..

Anyway now I need to think of a way of improving my balance enough in the next three weeks that I wont be "at risk of falling" I don't think my next clinical tutor will be very happy if I have to tell them that, its neuro-rehabilitation and I am supposed to be able to support other people at risk of falling, I'll be pretty useless if I'm the potential hazard lol.

The funny thing about it all was one of the guys on placement with me asked afterwards "what happened, its not usual to fall like that is it?" and my friend who knows me, said "no, its usually once a day not twice" I had to laugh, I guess its only the truth that I'm a potential hazard but I really need to do something about it before I or someone else gets really hurt!

The world through my eyes...

A dear friend of mine asked if she could interview me and post it on her blog, it was a rather scary concept because I knew I would have to openly admit to my inner feelings. But then I thought, well this is how it is in the beginning-people need to know this is what we go through on our journey of discovering RSD.

She is much stronger than I am, I only hope that one day with her help I will be strong too. She keeps me going and without her support and musings, I would falter more that I do. Maria you really are one tough cookie.

Take a look at her blog and Another Look at RSD and let her know we support her own quest to rise up and beat this condition!

The consequences of fear avoidance

I am beginning to learn the implications of 'misguided' information and the strong negative effect it can have on some patients. In the last few weeks I have met several patients who have made chronic pain the focus of their existence, I believe fear avoidance plays a big part of this.

One was told erroneous information about an incidental x-ray finding. As a result, very shortly after, his life completely fell apart, due to chronic pain and (I believe, based on information he presented) fear avoidance.

Here is an excerpt from my current reading:

Fear is a powerful motivator. It contributes to how you move, behave, and experience pain. The sources of fear are diverse. Fear may be strongly dependent on context, be obvious or be hidden.

All sorts of fears can lead you into a cycle of pain and disability from which it can be difficult to break free. Some of the information that you receive from health professionals, friends, and the media may contribute to fear. Different fears will be relevant to different people in pain at different times.

However, all of them can be considered under the same banner that we have mentioned repeatedly: your livelihood as a human is under threat. Remember, in persistent pain, when the alarm system and brain are sensitised, all of these fears can help maintain the pain by activating those pain ignition nodes - and set the orchestra up to play the pain tune. Remember that the brain wants to protect you from anything that is dangerous.

To face these fears, you need to be informed and understand as much as possible about your body. And you will need to be brave - this is the vehicle for the road to recovery.

Butler, D., Moseley, L. (2007) Explain Pain Third reprint, p. 100, Adelaide, South Australia, Noigroup Publications

After 6 years and a lot of suffering, he is now under pain clinic care and hopefully in time, this multi-modal intervention will have a positive result on his life. It is going to be a very slow process and require a lot of effort to restore the identity he was robbed of.

Initially I was alarmed by how much had been placed on the words of one health professional and how much now has to be done to undo those ingrained thoughts to get him back to functioning to the best of his ability. I wonder how differently his life would have been had he been informed, firstly with more accurate information and in a way he would understood. People place too much on a diagnosis, too much on structures and phrases and create mental pictures that feed the fear avoidance rather than create active coping strategies.

I could see mirroring of my own situation in what they were telling us (all chronic pain has many similarities) and I hope that because I have been exposed to some knowledge I will not fall into the mindset that some people get stuck in (through not fault of their own, can you imagine dealing with so much pain you don't know what to do and just being given a diagnosis and no useful information on how to cope with it?).

I just need to remind myself not to get too hooked up on the label but to focus more on education, staying positive, setting then reaching goals and exploring the edges of pain to remind myself that in my case, a little pain is not the threat my brain thinks it is.

And never giving up hope, life is still incredibly good!

With this amazing gift I will put all I have into keeping my identity and showing that pain is not my life, just a tiny element and I'm strong enough to step up to the challenge it has created!

Explain Pain

I'm reading a book at the moment called 'Explain Pain' by David Butler and Dr Lorimer Moseley, its easy reading and explains pain very well. Just so happens, we had a lecture on the mechanisms of pain the other day and much of the content was taken from this book! In the near future I'm hoping to contact Dr Moseley as I have been told he is actively researching CRPS and mirror therapy at Oxford University, I think it would be really neat to hear from him anything that might be interesting or useful in my quest for more knowledge.
I really like their book and am thinking of buying it at some point. It would be a great addition to my growing collection of resources and also an asset for my future patients.
It was interesting to hear our lecturer said that we really should be spending a lot more time studying pain and also more psychology too as we are dealing with people, usually in pain all day. This is who physio's deal with so we should have more understanding of pain and how it affects people in a more biopsychosocial dimension.

Leads me to the next thing...I've just started seeing a psychologist.

It took me a bit to actually admit that this might be helpful and then to admit I was going lol. But the more I read, the more I understand how chronic pain affects more than just the physical side of us but also affects the psychological side. I'm hoping that it helps some, even now its nice just to have someone to talk to, someone you don't feel guilty burdening with all the crazy stuff that is spinning round in your head. We haven't got very far as yet because I am a complicated person but he thinks that my emotions are causing a lot of strain on me physically so I guess we see where this takes us. If it has the potential to help, I'm willing to give it a try.

Physio is Fun!

I just love hydrotherapy!
Three Thursday afternoons in a row I get to 'play' physio with 5 of my classmates (under the watchful eye of a registered physio of course) in the hydrotherapy pool. This is probably the best placement I am going to get really.

The physio pool is 37 degrees Celsius, deliciously warm and my hurting body appreciates it immensely. I feel so much more alive and physically able in the warm water, pain settles and movement becomes easier.

Our clinical tutor was explaining to us the importance of movement after injury or surgery and then she said otherwise RSD can result...how amazed was I! I hardly ever come across people who know about it, I said that I had RSD and I think she was amazed too! This week I'm going to ask her if she has treated any patients with RSD before and how much she knows about it in general.

I think I am going to do a lot better in this placement-I feel more confident and it helps to be in a pain relieving environment. We had health and safety stuff and one patient last week and this week we hope to have 3 patients. Tutor said that if one doesn't show up they can use me instead as I'm injured lol!

Only problem is that after 2 1/2 hours you are very wrinkly and regardless of the warmth my foot didn't appreciate being used that long despite most of the time it was less that 50% weight bearing. I still love it though, I even had a chance to do some of the stuff prescribed to me by my own physio.

This was a bad mistake

I was going to head this up with "Just shoot me now" but then thought that was a bit severe and since I brought this on myself I have no-one else to blame.

I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger...

I forgot...

...and had no battery for my TENS unit today and boy did I learn a lesson.

2 days ago, I was going (carefully) down the stairs after our lectures. The stairs are a dark red colour and the stairwells are dimly lit. I happened to think that I had come to the landing when in fact their was still another stair to go. Luckily I was holding on to the rail and had a friend on the other side just ahead of me to catch me when I fell.

The bad news is I still fell, just didn't fall over but I jarred my foot-I consider rather badly.

Apart from me shaking so badly from the shock, my poor foot is not happy. I haven't been able to walk properly the last few days and after todays mammoth efforts in the walking department I have broken down. The shower water was unbearable, my sock is unbearable, I couldn't concentrate in my anatomy lab and its too cold and so I have to put something on it to try and keep it warm. Moving is now unbearable but keeping still is just as bad.

I have been beaten by pain and I have cried.

Now I have told myself off, tears are futile, they do not take away pain, nor are they beneficial in any other matter-what a pity.

I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs...

MedHeadFog

I have a serious case of MedHeadFog
I went to see my pain specialist yesterday and he increased one of the meds I am taking. I only take it once a day a nighttime and he has increase it to twice as much as I was taking before-although its still a small amount.
This morning I feel in such a daze, my mind is floating anywhere/nowhere and my eyes cant focus (even with my glasses on). I'm even typing really strange words with my fingers!

I hate feeling like this and I don't think it helps that for the last week I have had no caffeine. Last night I gave in and had some and it woke me up slightly but today I feel so so tired again.

I am hoping this is just me adjusting to the new amount and that in a few days I will have got used to it and just be the normal MedHead I usually am. I have to start back at Uni on Monday and feeling like this will not help one bit!

A time to be thankful...

An entry on a friends blog reminded me that I have so much to be thankful for, its easy sometimes to focus on distractions and the things that create difficulties and forget how good life really is.

So I thought I would remind myself just how much I do have to be thankful for.

I have a good home and family, my parents are always making sure I never go without anything I need and make sure I even have enough to get a few things I want too. My Mum takes me to all my appointments and believe me, that takes a lot out of her day sometimes, without her I would struggle a whole lot more. My Dad got me a flight back to uni so I don't have to be tired out by a 6 hour bus ride, how great is that?

For all my wonderful loving friends who make me happy, give me encouragement and believe in me when I need reminding, they understand what I am going through and keep me going...it means so much to have you all looking after me, I can never say thank you enough.

For all the health care people who do more than their job to find you the health care you really need, without them I don't know where I would be right now. I have my special physio's and podiatrist especially to thank, they always make time to listen to my concerns and have helped me get other professionals to as well.

For the new doctor and his lovely physio who are helping me get a handle on crps. Its amazing how a little confidence in your doctor makes you feel.

For being given good brains, even after several head injuries they still work although not quite as well!

For being able to rest quietly at home these holidays, for warm enough weather to ride my bicycle, for being able to go swimming. For the new shoes I can actually wear my Mum just bought for me despite me giving up and complaining to go home a million times.

For the prospect of physio school to go back to, knowing that I survived the first semester without totally failing (well at least I don't think I did...).

For discovering that the old me is still in here somewhere, just mixed in with the new me and maybe thats the best of everything ; )

I'm sure their are a million other things I am thankful for too but just now I cant remember them...life is sure full of so many good things, how could I let anything make me forget-even for a minute?


Thank you Maria