Tuesday, 23 January 2018

A flare up: Chronic Regional- what?

DISCLAIMER: Reader, I wrote this post a few days ago now, and at the time of writing I was yet to see a doctor to either confirm or deny what was actually happening with my health. This morning, I saw a doctor. She said quite plainly, 'Yes, this is the same problem as before, just flaring up again.' She also said the treatments are the same as the ones I've already had, and the investigations are the same as the ones they've already done - well over a decade ago, and all. I was angry about this - horrendously angry, and I have to pause here to thank my mum, my sister, my partner, and two amazing friends for being on the brunt end of that anger. But I was hugely frustrated that, after all this time, the first answer was, 'You still just have to live with it.' Now the anger has died down and I'm oh-so-aware that people out there are living with much worse things than this. But now more than ever, it seems important to me that I talk about this thing/malfunction/general irritant, because people are living with problems quietly for fear of what will happen, or how people see them, if they talk about them loudly instead. And maybe if I hadn't spent the last ten years blindly denying/ignoring that I had this problem, it wouldn't have come as such a shock when someone told me - surprise, surprise - that the problem is still there. And so here you have it, some musings on what's happening in my central nervous system right now (and why it's best that I start listening to that nervous system after all):


Eighteen (ish) years ago, I was diagnosed with a chronic health condition that I was told I would have for the rest of my life (it being chronic, and all).

Ten (ish) years ago, I started to deny that I had this condition.

Two (ish, depending on date of publication) days ago, I had to ask my mum to rub down my back with a rough hand towel – not for the first time, incidentally, but certainly for the first time in over a decade. I asked her to do this because somewhere along my spine a cluster of nerves is sending misinformation up to my brain and instead of my skin feeling normal, it instead feels hypersensitive (or, more specifically, it feels like part of my spine is laced with stinging nettles). The best way to get rid of that hypersensitivity is to de-sensitise the skin, and the best way to do that is to expose it to different textures – hence, the towel. I cried while she did it, but not because of how much pain I was in. I cried because I was so utterly embarrassed and disappointed that I needed this “treatment”. I cried because for years I have denied that I even have this problem – this malfunction, if we’re going to call a spade a spade – and yet here it is, again.

It’s the first time my other half has seen me experience this kind of sensation, and since it started I have repeatedly said and implied that I am embarrassed. Of this problem, of what it makes me, of how it makes me feel, of how it might make me appear to other people. Now I’m getting all self-reflective and I think that the above embarrassment that I’m talking about is largely – if not entirely – why I have tried and tried again to keep this ‘malfunction’ a secret from people – like it’s a mad woman to be locked away in an attic (or rather, a mad collection of nerves that needs to be isolated and properly treated – the metaphor doesn’t exactly carry though so forgive me). A few people know – a few people have seen me use my blue badge and I, from embarrassment again, have gone on to explain to them that I have this problem, life-long, blah blah – but fewer people still, even amongst those who know there’s a problem, know how bad the problem can get – how bad the problem has been.  

On a scale of 1 to 10 in terms of badness, this problem has historically been around a 9 (I have to say 9 because everything could always be worse, right? Although there were times during my childhood, when I went into my second, third, fourth month of using a wheelchair when I was pretty convinced that it didn’t get much worse than that – thank God that after three or so years of wheelchair-use things did, eventually, get much better).

In the grand scheme of things where I’m at now is probably a 1 – maybe not even a 1! Which makes this whole writing-how-I-feel thing seem even more (melo-)dramatic. But I guess I’m not writing because of how bad things are, were, or could be. I’m writing because right now I’m giving myself a hard time about the fact that my central nervous system is essentially being a bit of a joker – and it’s ridiculous that I’m giving myself a hard time over that (as if my nerves aren’t giving me hard times enough all by themselves).

This hard time though – the one I’m giving myself, not the one my nerves are giving me – is all because of stigma; it’s all because of what I think it means, to myself and to everyone else, to have something wrong with me – as though I’m publicly acknowledging some fundamental weakness, rather than a physical flaw that I have no control over (I’ll apologise for being ginger next, which may well be something worth apologising for at least).  

I guess the point I’m trying to make – God-willing there is a point here somewhere – is that even though I have something “wrong” with me, I’m fine. I’m not abnormal, or weak, or any of the other words that I’ve historically associated with this funky little defect of mine. My central nervous system does not communicate properly with my brain. My hair goes curly when it is wet. My taste-buds will not tolerate sprouts. I need glasses because I am short-sighted (this last one in particular is a far more noticeable “flaw” than anything running through my spinal chord right now, if only the insecure parts of my brain could see it that way).

I wanted to write this, whether I had the balls (sorry, mum!) to publish it anywhere or not, because I needed to get this stuff down. I needed to remind myself how okay it is for things to go wrong, and for things to be wrong, and I needed to reassure myself (reader, please hold me accountable for this if you ever see me in person) that having something “wrong” with me is not the same as being wrong, or broken, or incorrect, or any other synonym along those lines.

I have a wonderful family and partner, truly lovely friends, a job (two jobs, in fact) both of which I love and am currently able to do – and I also happen to have a malfunction in my central nervous system. And that’s just fine. 

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