CRPS – My Embuggerance (Part 2)

A friend once said ‘CRPS? Oh, you should call it CRaP for short’ giggling at her attempt at humour. Trouble is crap makes it sound like a niggly little irritation. Yet, it’s an embuggerance of fairly epic proportion. It’s pushed my many other conditions into the background as it’s an attention seeking little madam, constantly going ‘me, me, me!’ as it demands all of my energy and attention, preventing me from getting any rest or respite, stopping me from thinking, seeing and living.

So, I’m currently doing battle with my very bewildered brain trying to find ways for it to acknowledge my left leg and left hand exist. Physiotherapy for me is a whole new world of pens and paper, looking in mirrors at reflections of reflections of reflections and looking at pictures of hands and feet as I try to get my brain to realise I have two legs, two feet, two arms and two hands. I was slightly perplexed and extremely bewildered at first as I felt like such a tit actually admitting out loud that I couldn’t/can’t see my foot or hand. Well, wouldn’t you? My specialist physiotherapy sessions felt more akin to sitting on a leather couch in the room of a psychiatrist as my sanity unravelled as I realised just how messed up my brain had become. It actually took me a while before I felt able to articulate all of this to my physiotherapist even though he kept reassuring me all of this was normal in the extraordinarily abnormal world of CRPS.

I thought I’d gone completely mad admitting when I’m upright sometimes my leg vanishes or just isn’t there. Trying to draw myself and not being able to see most of my left side was heart-breaking and perplexing. Wanting to throw up when he brought a plastic foot into the treatment room was a real highlight for me, if I was capable I would have run for the hills but I had to verbalise my discomfort, which isn’t a skill I’ve mastered as I always smile. I’ve slowly got used to stepping into a different reality in my physiotherapy sessions as I can now talk about the weirdness and not feel like quite such an idiot. There are still times when I sit back and think about the mirrors and wonder if I’ve inadvertently stepped into another reality but then I take a deep breath and get on and do it anyway. It’s working, albeit very slowly and that’s enough for me.

I think it was Norman Doidge, a psychiatrist and renowned researcher into neuroplasticity said ‘you don’t have to believe it, you just have to put your disbelief to one side and get on and do it anyway’. I’m very open-minded and even though I’ve doubted myself in fairly epic ways, I’m working hard and trusting that my brain is plastic and pliable enough to work this all out. I still have days when all I want to do is scream because of the pain or rage at my brain for being such a mess, but I’m not giving up. I can’t.

When I started the physiotherapy, pictures of extremities (feet and hands) made me want to vomit (some still do) and I was told to look at other peoples legs. The OT suggested I looked at men’s legs as that was sometimes more successful, so that’s been an interesting exercise particularly as I’ve realised that I no longer actually notice legs or feet at all. It’s as though people stop at the waist, miraculously floating. After seeing one of the doctors, a fellow patient who also saw him said how impressed she was that he was totally colour co-ordinated with his suit, socks, shirt etc. I was surprised as I hadn’t even noticed he had legs.

I also didn’t know my left from my right. That’s still a work in progress as I found out at Victoria bus station when the sign said ‘look left’. I looked, but not left and the bus driver that stopped within a gnats whiskers distance of me when I stepped in front of him wasn’t impressed with my laterality practice either. The joy of CRPS…

CRPS – My Embuggerance (Part 1)

Perhaps the most challenging of my conditions is CRPS – Complex Regional Pain Syndrome (previously known as RSD). Most people haven’t heard of it nor have most doctors, and, as a result it’s missed, misdiagnosed or dismissed a great deal. CRPS sounds fairly innocuous but it has the tenacity of a rabid ankle-biting terrier that […] Continue reading →

Some New Credentials

Although the concept in itself has never really impressed me, I’ve often thought having letters after my name would show a life of learning and personal evolution. Now I have loads. I’ve got an impressive list of letters that sit snugly against my name. Yet none of them come from academia, nor do they come […] Continue reading →

A New Understanding

Well, it’s been four months since I left Stanmore (the RNOH, Stanmore) where I spent three weeks on a rehabilitation programme, or perhaps ‘condition management programme’ would be more apt. I’m still processing the experience and trying to get my head around it. Strangely for me I haven’t, until now, written about it. It’s as […] Continue reading →