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

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

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

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

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

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

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

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

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

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

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

Hydrotherapy update!

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

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

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

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

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

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.