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Mostly Cloudy, With Some Bright Spells
I went to the doctor last week to ask him stuff about my fibromyalgia. One of the symptoms of the illness is ‘brain fog’, where you can’t remember where you put stuff, what you walked into the supermarket for, or what you read just two minutes ago. It’s quite disconcerting. More worrying than that, the pain in my left arm and hand is worsening by the day. My right arm isn’t doing great, either, but my left is becoming useless. I can barely type. This blog has taken forever to churn out, when I used to be able to type faster than I could think. By the afternoon, I usually can’t hold a cup of tea. Today I have been trying to clean the bath with one hand. I am reduced to filling the kettle with a glass of water, rather than holding it under the tap.
I used to have a clean house. Here I am sweeping the floor in my blue gingham dress. This was taken a while ago, when I was pretty. Both myself and my house are less attractive these days.
I favour dinners which don’t require a knife and a fork, and find myself completely unable to drive at least 50% of the time that I attempt to set off somewhere because I can’t change gear. Seriously. I also get weird rushes of pain and nausea, out of the blue.
Take last week. I’d gone into town to meet a friend. ‘Hello!’ I exclaimed excitedly (regular readers will know that I don’t get out much). I ordered a coffee and BOOM! Pain. Nausea. Dizziness. Pain. More pain. More nausea. I’d barely taken a sip, but I could feel all the life draining out of me. I drank some water instead, and left, steadying myself along the road to my car like a drunk. I was stared at. I’m not surprised. I must have looked a sight. I got home, took some painkillers, and lay on the floor. What kind of a life is this? Answer: a really rubbish one.
Can my parents get their money back?
‘Our child is broken. We’d like a refund. Here’s the receipt. Thanks.’
I am at my wits’ end. So. I am at the doctors. I give him a moment to take in my under-eye bags and dark circles and my delightful grey skin. I let out a couple of yawns for good measure.
‘How can I help?’ he asked.
I replied thus: ‘Uh… um… uh… hang on, no wait, uh…’ while he looked at me as if I were speaking Cantonese. I may as well have been. I shook my head. ‘I can’t remember,’ I said. ‘It’ll come to me in a minute.’
Appointments are only mean to be five minutes long, and I’d already been sitting there for at least 47 seconds. It wasn’t going well. Suddenly, a brain wave thing flickered and I remembered what I was there for.
‘That’s it!’ I yelped, limply ‘punching’ the air with all the strength of a newborn kitten, only far less adorable.
‘I remember now. I need to talk to you about my brain fog, and the fact that I keep forgetting stuff. And the fact that I’ve not slept more than two hours a night in over a month. There.’ I finished my sentence, and placed my hands in my lap. I must have looked quite pleased with myself. Or just mental. Either way, it worked better than when I’ve gone in with lipstick on and made jokes about stuff instead of actually appearing and acting in a way which reflected how terrible I felt.
I’ve been doing this – the acting and appearing fine – for over a decade. I suppose I think that if I can convince people that I’m not that ill, then I can’t be that ill. Except that I never see people other than when I am dressed, wearing make-up and my fake smile. Nobody knows that I will always make afternoon appointments for things because it takes me so long to be able to get going in the mornings, through lack of sleep and over-abundance of pain. I can’t leave the house without having a hot Epsom salt bath, a breakfast of cereal and painkillers, without massaging my own arms and legs (if the pain in my hands allows, which lately it hasn’t) with lavender and almond oil, and without sitting down every couple of minutes whilst drying my hair to prevent myself from passing out. It’s nuts. It’s a long process, the road to ‘normal’. Even with the AS pain it was hard work, but now… pffft. It’s nigh on impossible.
I medically need to live next door to this place and have this bloke run my baths for me:
On to some serious stuff. I’ve had this deep, pressing feeling in my non-existent gut for years. I knew it would hit the surface some day; I always imagined it would be way sooner than now. I suppose I thought that if I could muster up enough energy to get through 12 years of hell, I could carry on mustering up a bit more. What I call the ‘Black Cloak of Gloom’ has been hanging in my wardrobe for years, ever since I was in hospital in 2001. I could also call it ‘The Cape of Misery’ or simply my ‘Doom Coat’, either way, if it was visible to the naked eye, it would be as black as a crow’s underbelly (hang on, are their underbellies black? I’m being presumptuous) and as heavy as chain mail. It would give off the aroma of a damp dog. It would not be very nice. This is a nice cape:
‘That’s no good,’ I thought, when it occurred to me what was going on. ‘I can’t have that. I’m not a gloomy sort.’ But my body and my over-stimulated, always-on-alert, totally stressed out brain have just given up, and I can’t say as I’m at all surprised. I am, however, terrified of what is becoming of me.
I could handle the pain with Ankylosing Spondylitis. Well, I could since being on anti-TNF therapy (I was put on Etanercept in 2004). It helped considerably, and meant I could a) walk some days and b) well, that’s good enough, right? I was more or less housebound before I started those injections. I’m still doing them now, twice a week, as regular as clockwork. I still have massive loads of pain radiating from my spine, I still hurt a lot, but I’m more mobile than I used to be. Not great, but not completely crippled. That’s something. At least it was, until fibromyalgia came along.
I am no longer holding it together. I told my doctor this. Between you and me, I am on some new pills. He is hoping they will help induce sleep. I am hoping that, too. They might look like this (if only):
The first night I took one, I had the hideous, squirmy feeling all over my body; the muscle cramps which do not permit me to lie still, much less sleep. I wanted to tear my limbs off, one by one, and throw them at the wall. I was screaming inside; it’s an unbearable sensation which can only be described as having rope pulled slowly and clumsily through the middle of your muscles. A more horrible description would be that it’s as if someone is pushing wire up through the palms of your hands into your arms, and wiggling it about. The same thing happens in your legs – wire being pushed up through the soles of your feet, all the way up to your hips. At least that’s what it feels like for me. Oh, and it’s also like your skin is too tight, like you’re about to burst. It’s really disconcerting, and it HURTS.
Gautier was asleep beside me. It was 1.34am. I got out of bed, and stumbled to the door.
‘Where are you going?’ he whispered from beneath the duvet (he likes to wrap it right around him until I can see nothing but a tuft of hair poking out).
‘Downstairs,’ I said, grimacing and hopping from one squirming leg to the other, whilst shaking out my arms like a swimmer does moments before a race. ‘I can’t lie still, I need to walk around,’ I explained. Just then, as I turned to leave the room, everything started spinning. I felt as though I was going to pass out. I sort of fell on the bed, and sat there, holding my head in my hands. Gautier lay me down, held my legs up at the ankles and waiting a few moments before asking if I was OK.
‘I think so, now,’ I said. He got a pillow from the spare room, got me back under the duvet and propped my stupid legs up on it. ‘I need to get away from these cramps,’ I said, crying a bit by now and grabbing at my thighs where the squirming sensation was strongest.
‘Just see how you are in a minute,’ he said, pulling the duvet over me and kissing me on the forehead. He put Baby Monkey under my right arm. Within seconds, I was asleep. This is Baby Monkey, on holiday in France a few years ago, he’s brilliant for a cuddle:
How freakin’ weird is THAT? Not the fact that there’s a monkey wearing a handkerchief, floating about in a washing up bowl (translation: pirate in yellow ship if you’re the actual monkey), but that I slept? Like, eyes closed and everything!
I got up to go to the bathroom at some point (Gautier usually takes me. Poor him. I’m so zonked out on painkillers or sleeping pills that I tend to sway and fall over if he’s not there to steady me. The annoying thing is, I’m never asleep, just drowsy enough to be wobbly. How daft is that?) but I actually went back to sleep afterwards.
Sleep time: 01.34am
Awake time: 08.17am
I think that’s cause for celebration *cracks open PLAIN chocolate digestives*