If wishes were horses, beggars would ride...

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

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!

I hate hospital...

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?

Spread the Word!!!!

Say it like it is...

"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,

My brain passed the test!

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!

I'm ready to cry...

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

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.

Worth it...

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

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

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

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

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!

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!

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.