Mirror Visual Therapy

I had my first physio appointment today with the special physio, she is lovely and I wish she wasn’t so far away from where I study. Its almost strange after so long of getting nowhere, to be getting help from people who really understand what its like to have CRPS.

She started mirror visual therapy with me this morning, something I had never heard of till last Saturday. What you do is rather than stand in front of the mirror, you sit (on a chair or the floor) with the mirror sideways, with the back of the mirror to your bad foot side and the mirror facing your good leg. When you look in the mirror you see your good leg but it is in place of you bad leg.

I then move my good foot and my brain thinks its my bad foot moving. I did simple plantarflexion and dorsiflexion and that felt fine and then I did some inversion and eversion but that made my bad foot hurt even though it wasn’t moving at all! Straight away we stopped that and did flexion again till it calmed down. After a bit we tried simulating walking movement till it brought on pain and then went back to flexion again which calmed the pain down again.

It was so fascinating how I could increase and then decrease pain in my right injured foot by watching my uninjured left foot move in a mirror…how does that exactly work? The brain is a very complex interesting thing.
The plan is to be able to gradually start to do the movements with my CRPS foot and have a way of calming any pain but I think I am a way off that yet but this is very exciting!

I also have a TENS unit to use to also help with the pain, I am to increase my usage by an hour a day till I reach about 8 hours. This is also hopefully going to help with managing my pain better. I hope it does!

Refreshed Hope

Saturday was a great day for me, I got to see a pain specialist who knows about CRPS/RSD and is up to date with treatments. I have so many people to thank that this occurred - thank you everybody!
I am so relieved about it all, I was beginning to think I would never find a doc here in this country who knew anything to help me and that I would drive myself crazy with this condition.

I spent over 1 and a half hours with him (sorry to the person who had to wait) and feel like I am in such good hands. He has altered my meds by adding new ones and slightly lowering my gabapentin dosage. He hopes to lower it more as we get my pain more under control.

They sounded horrified by many of the things I said about what doctors said in response to me seeking help before. They said they try their best to educate people by doing seminars and things, I understand though, its hard for everybody to know everything and this is not a well known thing.
I have a feeling that a few people are going to learn about it through me, I want to make sure my class at physio school are all introduced to it during their training, physio's are often the first to see people and if they know about it then maybe others wont have to wait as long as me to get proper treatment.

We are getting my new meds today (the pharmacy had run out lol) and I have an appointment with a physio who specialises in chronic pain and CRPS. Is it bad to feel excited about this? I'm so excited that this may be the beginning of things getting much better, they said that this is just the beginning, we have so many things to try and they really think that I will get better!

They reminded me though that there is a fine line between doing enough and doing too much. I know I push myself a lot but physio school requires that, I can't change it but maybe I can change the way I do somethings to be easier on my body.

I am going to beat this thing, I am going to put my heart and soul into everything they suggest because I have got my determination back, I have just remembered I am a fighter!

Learning to say yes...when its an offer of help

I had an exam this morning.

A few days ago we discussed this at the dinner table and as it was going to be on a Saturday my Uncle offered to take me into uni so I wouldn't have to ride in on my scooter.
Me being stubborn, as usual quickly said no and if I recall, it wasn't a very gracious no either, I feel like people are taking away my independence so I get very defensive very quickly.

Fast forward to this morning...wake up to blustery rain with snow on the hills-just what I need. I take a shower and try not to think about what is ahead of me never mind the exam...the very cold, very wet ride and then the long walk from one end of uni where I park my scooter to where my exam is. My foot is not behaving well at the moment because of the see-saw hot-cold weather we are having and riding my scooter is the worst because I cant wear any proper shoes that would help keep my feet warmer on the ride in.
Just as I am getting my wet weather pants out of my scooter and moving it out to the driveway ready to go, my Uncle has just got up and asks me again if I would like a lift in to uni...I feel so bad saying yes, this time not because I don't want a lift but because I'm lucky to have him here when I need it and I had already refused his help earlier. It really would have served me right if he hadn't offered again!

Somehow I need to come to terms with the fact that accepting help is not giving in or losing independence, it is simply being 'smart' and that I'm entitled to a bit of assistance to get me through.

The undergrad dean told me a few weeks ago that their job was to provide me with what I needed to continue on the program, but that it was MY job to make use of all the help that was available to me and just do my best. I don't have to do this on my own and trying to wont do me any favours.

This is a sentence I wrote in a scholarship application I applied for at the beginning of the year...

"I freely admit that in order to fulfil my dream, I will need ongoing help and support and I am not afraid to ask for it."

I think I need to remind myself that "A am not afraid to ask for help"!!!

I love Candycorn...

My Mum was recently in the States (LA to be exact) and I got her to bring me back some candycorn.

When I was in primary school I had a friend who's mother was American and had lots of family in the States. I remember being at her house and getting sweets, especially candycorn and I couldn't remember what it tasted like except that I loved it. When I found out my Mum was going over, the one thing I asked her to bring me back was some candycorn so I could remember all those fun times we used to have.

I have been saving the last handful for some time (having eaten most of it not long after she sent it down to me), its sitting in the little bag it came in but I cant bring myself to finish it...maybe I will take some home this holidays and let my Mum try a piece or two?

Brain Injury Awareness Week

So here we are right in the middle of Brain injury awareness week.
This year the focus is on concussion, something I have had my fair share of experience in-especially the long terms symptoms that sometimes linger for years.

I don't ever recommend trying this out, it really sucks and anything that involves your precious brain cant be good.

Seriously though, I never knew just how complex your brain really was until this year, I mean I had some concept I suppose but until I started studying the parts that make up the brain and the complex functions and then get told that we don't really understand much of how it works, you start to appreciate just how important it is to look after your head.

I'm making it my most important goal (over and above exams and everything) to stop falling and giving myself complex concussions. Realistically this is a bit hard just to start doing, but I'm on track to start sorting out all my balance and vestibular problems and hopefully when we get these sorted, habitual falling will be a thing of the past.