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Mostly Cloudy, With Some Bright Spells
It’s been a bit of a long time since I last wrote something. Well, other than a shopping list, ever-increasing ‘to do’ list and my Euro Millions wishlist. There’s a good reason for my absence. I am in more pain than ever before. Seriously. I saw my rheumatology nurse last week. She is pretty ace, compared to the consultants. She listens, she nods in all the right places and when I ask for her advice, she actually gives it. Hoorah!
So. I’d been getting unexplained new pains on top of the explained current pains caused by the AS and the scoliosis. I’ve had a horrible, heavy ache in my arms and legs for months. I’ve had headaches, been barely able to hold a book and I’ve been dropping cups, plates and all sorts of kitchen props constantly. I’ve been tired for years, but never so tired that after cleaning the bathroom I’ve had to lay down for fear of my aching legs giving way. I feel as though I’ve been trapped under a slab of concrete for a week, or that a really fat person has been using me as a sofa.
More recently I’ve had such terrible neck pain that I can barely turn my head, let alone drive a car. Since my birthday party, where you may recall I pushed my poor body into some dancing stuff, I have felt dreadful. I’ve not had a single day since July without being on the verge of tears through the pain. My insomnia is worsening, and I get by on around 2-3 hours’ sleep a night. I don’t sleep during the day, because I think that’s for lazy people (I know, I know).
Two weeks ago I did manage to nip to France with Gautier for a week’s stay in Nice with his utterly lovely mum and step-dad. I was still in a lot of pain, but at least I was on holiday. I managed to go out for dinner and enjoy it; I seemed to have a two-hour limit on pleasure. I’m sure it was a combination of wonderful food, being dressed up, being warmer than I am in England, and being happy. It’s the endorphins created in that moment. Once it’s over, it’s all systems go again on the pain. Here’s how endorphins make me look:
The thing is, I don’t think Gautier has told his mum how sick I am. She knows I have back pain, but I really don’t think he’s explained how many conditions I have, and how they affect me. They always seem surprised that I often don’t sleep all night – a mixture of anxiety and pain – then fall asleep as they’re getting up when my body can’t take any more of being on alert. They don’t realise that driving down twisting country lanes at the speed of light hurts my neck and my spine. They don’t seem to know that sitting on a wooden chair without a cushion, or sitting at all for more than a few minutes, actually makes me want to cry. I don’t, though. I smile instead, even if inside I’m screaming, ‘Get me a cushion, people!’
I had a lovely time, but I felt as though I’d packed the pain in my suitcase. Does that make any sense? It’s just there, wherever I go, whatever I do. My only respite is when I’m in the bath. I don’t think I can live in the bath. If I was going to try it, though, I’d want it to be ‘Pretty Woman’ style. A big Jacuzzi bath, Walkman, nice thick hair and Richard Gere paying for the bubbles (and the rest):
So, my nice nurse suggested that my more recent symptoms pointed to fibromyalgia. If you don’t know what that is, take a look here: http://en.wikipedia.org/wiki/Fibromyalgia. She examined me by applying pressure with her fingertips to various tell-tale points on my body; if you score an ‘OUCH!’ to more than 11 out of 18 points, you’ve pretty certainly got fibromyalgia. Oddly enough, it’s what I thought I had 12 years ago when none of the pain could be explained. She also told me that many rheumatology consultants and doctors don’t believe that fibromyalgia exists. Interesting. I’d love them to spend a week in my body and tell me that it doesn’t exist. Trust me, I don’t want to start inventing ailments; I already have quite enough.
I’ve tried painkillers but they’re not working. Instead, I’m going to attempt to train my brain into not being silly. If the pain is caused by receptors in my brain rather than inflammation, I think I need to sort my brain out. I’m not sure how I’m going to do this, but I have to try something before I simply drink my birthday bottle of Bombay Sapphire and make a casserole from all my medication to finish myself off. The pain is unbearable, it really is. It’s with me constantly. I’ve never felt so exhausted, either. So. Today I start on magnesium supplements, because they’re good for muscle health, and can help a great deal with spasms and pain, apparently. I’m also going to take cherry juice pills, as they contain natural melatonin, which should help me sleep. Well, that’s the theory. Sometimes I think the only thing which will help me sleep a Tom and Jerry style frying-pan-over-the-back-of-the-head action:
I’m also going to look into some kind of hypnotherapy or relaxation technique, for I find it as hard to relax as Victoria Beckham does to smile. I’m sure all of these diseases are stress related, to a point, so I need to work on that. Big time. I’m going to make my own body oil (grapefruit and almond oil for the morning, to refresh me (as if!) and lavender and almond oil for the evening, to relax me (again, as if). I’ll also ask Gautier to give me a little back massage each evening before I go to bed, with the lavender oil mix. Right now, my head is pounding (I’ve just cut out caffeine, having decided that my brain can use all the help it can get and that might make it more mental) and I feel waves of nausea washing over me due to the pain which has hit every part of my body save for my toes, my face and my hair.
I’ve also downloaded a couple of books on fibromyalgia. I’d just come to terms with my scoliosis diagnosis of last year; at least the pain of that was usually responsive to pain killers. These pains aren’t, so I’m having to find alternative approaches. What frightens me is not just how sick I am, but how sick so many of us are. Years ago, I didn’t know anyone with with food intolerances, IBS, IBD or AS. Old people got sick, not young people. Is it caused by multiple vaccines? I had a tonne before I went to Thailand and had colitis symptoms within a year. Coincidence? I’m not so sure.
Is it caused by the food we eat, the pesticides on our food, the hormones swimming about in our tap water? Have I been killing myself with hair dye and the toxic crap in the things we use every day, like toothpaste, shower gel and shampoo? I say that loosely; I am very clean, I don’t speak on behalf of the rest of the nation.
I think it’s a combination of all of these things, plus the stress of day-to-day living in the 21st century. I wouldn’t mind being sick if I was obese, ate junk food all day and didn’t move, but I was a fit, healthy 27-year-old before I got ulcerative colitis and ankylosing spondylitis. Even those two diseases I could just about cope with, but fibromyalgia is worse than those two diseases combined. Way worse. It’s evil. It’s inside me. It’s basically ‘Resident Evil’ meets ‘Alien’. I have to find a way out, and fast; if I don’t, I feel like the pain will eat me alive. A bit like this shit: