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Mostly Cloudy, With Some Bright Spells
Happy Halloween, people! I don’t have the strength to carve out a pumpkin (cheers, fibromyalgia!), so here’s a picture of Pantouf, my trusty sidekick, and Bat, his pet bat.
Pantouf and Bat had been to a Halloween party and were lucky enough to come away with a goodie bag full of chocolate eyeballs, flying saucers, bat embossed biscuits and a chocolate spider lollipop. Bat can be seen sucking on his tubular wheat snack – ‘it’s going to last him a week!’ declared Pantouf. For those of you yet to read ‘Mostly Cloudy, with Some Bright Spells,’ Pantouf is my lifelong adventure accompanier, if that’s even a sentence.
I’m writing this after absolutely zero minutes’ sleep last night, two hours’ worth the day – yep, 9am to 11am – before and a whopping three hours in total on Sunday night. Bear in mind that this is a continuing, massive bout of insomnia which has so far given me one night’s sleep in, ooh, 17 days. Seventeen! And that’s after trying super strength melatonin (purchased in the US), phenergan (an anti-histamine which usually sends me off), L’Tyrosine (an essential amino acid which is apparently good for aiding stress and anxiety), no caffeine, no wine, then wine, blah blah blah. Basically, NOTHING IS WORKING. So, whatever I write today is bound to be a load of old nonsense, but I have to get some words down today, even if they turn out not to be in the right order.
In my last blog I mentioned that I had given an after-dinner speech at a patient group medical thing (my words, not theirs). Well, I did. It was for worldwide patient group representatives for those inflicted with Immune-Mediated Inflammatory Diseases, no less. Debbie Cook, NASS director (http://www.nass.co.uk) put me forward for it and I wrote a sort of story about how I came to be infested with ulcerative colitis, ankylosing spondylitis and fibromyalgia. My fibro symptoms were so bad the week before the speech that I wondered if I’d actually make it to London at all, given that my insomnia was so brutal, my pain so unyielding and my fatigue, well, so exhausting. I made sure I had a rest the day before the speech, topped up my pain killers and took my hand luggage case on wheels with barely anything inside it (dress, shoes, make-up, toothbrush, lavender oil and Little Dog, for luck. He’s a palm-sized little dog (massive ears). Not an actual dog. One of Pantouf’s brothers. Anyway, I digress.
I didn’t really have to expend much energy, as it turns out. I drove to the station, took the train to London, a cab to the hotel and the lift to my room. I had a nice hot lavender oil bath, ate some takeaway sushi so I didn’t have to go downstairs for food (I am not at all good at either mingling with strangers or visibly eating on my own) and took ages to get ready. I wore my favourite vintage ‘50s taffeta dress and even brushed my hair. I looked very much unlike a sick person, which was the whole point. I was addressing ‘invisible’ illnesses, after all, the point being that what you see isn’t always what you get. Here’s how scared I looked, because I was. In the background is a picture of the girl from ‘The Exorcist’. I was saying that’s how bad I looked when I was in hospital having my bowel ripped out, because I did look that bad.
I told the nice ladies at NASS that they should keep me off the wine before dinner or I couldn’t be held accountable for what came out of my mouth. Ingrid from NASS actually accompanied me to the ladies’ because I was so nervous beforehand that she thought I might do a runner – I felt like I was under arrest – but even stone-cold sober I tripped over the word ‘musculoskeletal’ (who chooses that word for a speech? Seriously?) and ad-libbed my way through most of it, starting with a picture of a seagull and ending with one of a llama. You really had to be there. Afterwards, some people said they’d been in tears. In a good way. I think.
Here I am with Debbie Cook from NASS.
I don’t know how Debbie manages – she has ankylosing spondylitis and spends most of her life travelling around the country, campaigning for awareness of AS – but I do know that she’s brilliant at her job, and that’s probably because she’s living with AS, not just talking about it. This is before said speech, and I was well nervous, hence my robotic expression. Inside I was screaming. Plus I was drinking water. Pah! I did, however, get a little tipsy in the bar after the dinner and my parting words to Debbie were, ‘Oh, your hair is really lovely!’ and I think I actually stroked it. Duh.
The weirdest thing of all was that I wasn’t in any pain that day, for the first time in weeks. OK, so I was taking painkillers, but ordinarily I’d still have something hurting somewhere. My fatigue was manageable, my legs didn’t wobble and I even wore heels. Ridiculously, I felt like a bit of a fraud, standing there telling everyone in the room how sick I was, yet looking like I was about to receive a ‘Healthy Looking Idiot of the Year Award’. I guess that’s the thing about ‘invisible’ illness as opposed to disability. You can see a physically disability. Granted, you can see pain if you look hard enough – a person’s eyes will always give it away. You can see a limp, no matter how slight, a hand placed protectively on a burning hot hip joint, two palms rubbing away at the small of someone’s back as they pretend they’re listening to what you’re saying. If you look carefully, and you know what you’re looking for, you’ll see it. But how many of us are actively striving to hide our pain, our discomfort, our fatigue? I know I do.
I find that an integral part of coping with chronic pain is to present myself as the opposite of someone who occasionally contemplates the pros and cons of suicide, who looks an absolute fright without make-up on (good for Halloween, granted, but I’ve not got the energy to go out and scare people) and whose body is so fragile and broken that I feel as though a big gust of wind could rip me to shreds. I feel like Dorothy in The Wizard of Oz, coming back to Auntie Em’s farm just as the tornado swept through, all in a panic, trying desperately to get safe, clinging on to Toto (in my case it’d be Pantouf). Actually, our front garden fence looks about as good as Auntie Em’s, too.
At least Dorothy had a dog; I don’t. Well, I can borrow Cookie from next door, so that’s something. Here he is on a little walk with me last week. We kicked up the autumn leaves and had a cuddle on the bench. I don’t know if he knows how much I love him. I hope he does.
I once got blown over by the wind on the seafront; I fell on my shoulder, cut my knee and grazed my hands so badly that I was crying as I drove home, dripping blood on the steering wheel. Today, I feel a bit like that. Minus the blood (and the surgical spirit which Gautier doused my hands in once we were home. Ouch!) I feel vulnerable, and I feel weak, and I don’t like it. No matter how rubbish I feel, I always shower, I always put make-up on and I smile. I might, at a push, even wear heels if I don’t have to walk more than three steps. That’s why people don’t believe I’m sick, because I don’t want to believe I’m sick, so if I don’t look sick, I can’t be sick, right? It’s all smoke and mirrors, people, smoke and mirrors. I might Sellotape a bunch of bananas to my head and then at least I’d look a bit odd, and I could say, ‘Hey, I’ve got diseases, look!’ and people would probably get it. Well, maybe.
When I’m out with friends (which is about never), they don’t notice me slipping my painkillers out of my bag, they can’t see the heat patch on my hip or see what I feel – the pain shooting through my arms and legs, my shoulder blades, my coccyx. It’s only when I say, suddenly, ‘Cripes, I have to go now,’ that it becomes apparent that no matter how much I try to pretend I’m OK, I’m not. It’s always just a matter of time and I can only sit in one position for so long. Well, not so long. That’s my point. Here’s a photo which has nothing to do with any of this, but you might like it. It’s my dinner from the night Colonel Gaddafi was shot. It’s my homage to a rotten dictator. I love fish fingers. Brilliant, no?
See, I’m not a misery, I make food dictators. I feel atrociously unwell and I’m still funny, right? I did an Osama Bin Laden potato when he got shot, I just forgot to take a photo of it.
I don’t know how others deal with it. I know that there are millions of us, but you’d never know it unless we announced it. Is it better to be invisible, or are we making things worse for ourselves? If we keep pretending we’re OK, surely that’s what everyone will think, and then we’ve only got ourselves to blame when we feel that people don’t understand. It’s a tricky one, I know, but I still vote the clean hair/lipstick route. At least for the girls.
I know I’m going off on tangents today, but I have a lot on my mind, and my mind isn’t working. I wanted to share something a little controversial, but I’m going to save it for the next post because right now, I’m too tired to make sense of anything *flops on to keyboard* and I have to cancel date night with Gautier because I haven’t had any sleep, so can’t go out for dinner (even when it’s a 2 for 1 offer, and I’m so not the type to turn down a freebie). I was so looking forward to salt and pepper squid followed by a big bowl of spaghetti carbonara. Nothing fancy, just a change from these four walls and from me having to think about what to cook. Here’s the squid being prepared for us. Now I have to phone up and tell him to return to his underwater lair because we don’t need him.
My arms hurt, my hands hurt, typing this hurts. I feel completely manic. Sleep deprivation is a form of torture in sensible parts of the world. I could probably get a job with Special Forces; after all, I’m now three days in and I still haven’t divulged the location of my comrades. Or rather, I know I could go at least this long without giving up important information. I think it’s time I asked my doctor about stupid amitriptyline because I might actually die of exhaustion if sleep does not come, I really, honestly might.