Thursday, 2 August 2012

Wobbly times

My last blog post highlighted the battle I was having with myself mentally. Since then I have had a good positive period when I felt like the old me. However in recent days I have found myself starting to sink again. I spotted the signs this time so it hasn't caught me napping like the first time. It has however prompted some soul searching to try and work out what on earth is going on!

The brain is fantastic isn't it? So protective, it gently wraps us up in layers of cotton wool or whatever the equivalent is for the mind. At the core lie all the horrors, those things you daren't think about or even contemplate. Too awful to bring to the surface, the absolute raw truth of what we face is well hidden by our brain. When it feels we are ready, a bit like an onion, a layer of cotton wool comes away uncovering something previously too difficult to admit or come to terms with. In the last six and a half years so many layers have been removed. Each one has come with an acceptance (often grudging) that I can no longer do something or admitted that my quality of life would be better if I stopped being so damn stubborn, 'give in' and accept more help in some way. We are talking major life changing matters, those things you never want to accept but must if you are going to move on with your life. 

The realisation that you're never going to be able to work again no matter how much you'd love to be able to. Others knew many months before I could accept that my working life was over. The acceptance that you simply can't walk anymore and the dreaded wheelchair really is your only option if you are to get out of the house. The fact that you've completely lost your independence and are reliant on others for everything. That at the age of 39 you have to use a commode because you simply can't carry on dragging yourself up the stairs each time you need a pee. That you're stuck with the life you now have, rubbish as it is, and somehow have to make the most of it. I could go on but you probably get the idea.

I haven't mentioned anything medical yet. Surprising? Well yes, because CRPS is incurable so you have to accept that you're not going to get better. There are various drugs, procedures and so on that can be tried. They won't cure you, they might reduce the intensity of your symptoms if you're lucky. If It's caught early enough you might even manage to go into remission. Very few manage remission in my experience but I'm sure there must be some out there somewhere.
I've seen Consultants from various disciplines and as a result been subjected to all sorts of blood tests, other tests and Endless MRI scans. I've seen three different pain specialists including the top man in London. All concluded there was nothing they could offer which would improve my condition.  I've also been to Moorfields for investigations into severe eye pain, again CRPS related. We've tried all sorts of different drugs, I've had infusions, nerve blocks and nothing has touched my CRPS. The cocktail of drugs I take now only does so much and in recent times they have been doing even less.

Until very recently I had come to terms completely with the realities of my situation. Ok, there is nothing they can do for me, I have just got to get on with it. Perhaps in the future there will be something that will help me. However mentally I was in a comfortable place, fighting as hard as I can to not let CRPS beat me. Getting the most I can out of life despite what it throws at me. Many comment on how positive I am, my fighting spirit. I am the same person I always was, just stuck in a body that doesn't work anymore. Some have said I'm an inspiration, which I neither understand nor believe.

Turns out there was another layer to come off, brought on bizarrely because I have made some wonderful friends, including fellow sufferers on Twitter. I have always done what I can to support anyone if I can. In my nature, why I became a teacher. Having had CRPS for the time I have, I have the proverbial tee shirt. If I can allay fears or explain how something works I'm more than happy to do so. In doing so I have however uncovered this new layer. Where before it was just me, my drugs, tests and treatments I now hear about others'. The infusions they are having, drugs they are trying and so on. None of it makes me feel jealous, or makes me think I'm missing out so what's the problem?

It has completely thrown me, in the sense that it has really brought home just how non-existent my options really are. We can tweak the drugs, but we've been doing that for years without great success. The treatments people are having aren't any different to stuff I've had in the past. I am delighted that my friends may get some extra relief, really gutted when they don't. So why on earth am I fighting like hell to stay afloat myself?

I've come to the conclusion that my acceptance of my situation medically was limited. My wonderful brain was shielding me from what is actually a horribly frightening place and certainly a depressing future. This is going to get worse as the drugs struggle to cope as well. Maybe there will be a time when nothing helps at all. My quality of life which has gone down significantly in recent months isn't going to be radically improved. Indeed it is only going to get worse. When I go to the appointment at the Pain Clinic in September there is a more than a fair chance that my Consultant is going to look at me as he has so many times before in the last few years, and admit that he has nothing else to offer me. Where do you go when you have no options? That is what I must get my head round so that I can get back to where I was. Quite how I'm not sure right now. Help!

I must stress that the last thing I want is for anyone to treat me differently, to not tell me about what what's happening to them. At the moment I have nothing to give and must focus on myself. Please remember I still care though.

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