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!

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.

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!
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!
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!
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.
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 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.
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...
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!
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 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 is sure full of so many good things, how could I let anything make me forget-even for a minute?

Thank you Maria
I'm coming to the end of my 3 week semester break and although I am semi-excited about going back (I just love physio school), at the same time I am totally overwhelmed about what I am going to have to do to get through the rest of the year.

During my break my routine has completely gone out the window, doesn't help that my brother lets the radio play at 4.20am so I cant get back to sleep lol. I have got back into doing some more physical things again, thanks to Jess I have been swimming 3 times and have even been for a few bike rides on the warmer days. I haven't done much proper study lthough I have done some and also some other more 'interest' readings.

I have had some fun too, getting to go dancing and they even had our winter dance party so I could go. Last weekend we had a cranium games night and I think everybody throughly enjoyed themselves, lots of rolling around on the floor at varying points during the evening! Jess even managed to make me choke while drinking, twice!

I have also had a few appointments to take up my time, the most important part of this break, along with the relaxing I got to do. My life has turned around so much during the last 3 weeks, I not only have a diagnosis, I have a doctor, a physio and a treatment plan. No longer do I sit worrying about how the rest of my life is going to turn out-now I have a plan and feel positive about my dreams turning into reality. Life is starting to look rosy again and I am starting to get my happy, cherry self back. I'm hoping that this will help me cope with the forthcoming semester and all the obstacles that come with it-wish me luck!