Fright Night

Click here to download my little book:
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.

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No Sleep ‘Til Brooklyn

Click here to download my little book:
Mostly Cloudy, With Some Bright Spells

I’m writing today through a murky brain fog, caused not only by the idiot that is fibromyalgia, but by the crazy nuts lack of sleep which goes with it. I got two hours of sleep on Sunday night – well, Monday morning, to be exact; two hours on Tuesday between 4.00am and 6.00am and at last, a half decent six hours between midnight and 7.00am on Wednesday, although I got out of bed four times even then. Last night I meditated, counted backwards from 100 and still didn’t fall asleep. I got up, went back to bed, got up, went back to bed… and at 7.00am I gave up and just got up and stayed up.

Despite looking as though I’m halfway through make-up for a zombie film, I was determined to head out. I went into town, bought some new owl-print pyjamas (they’re brilliant) stopped off for some nice bread at the patisserie, posted a couple of letters, stopped off somewhere else to buy a nice cake tin and then whizzed off to the pet shop to buy our horrid cat some really fancy biscuits, even though she doesn’t deserve them – I have met potatoes more affectionate than she is. She’s very fluffy though, and very pretty. Here she is with Pantouf, the star of ‘Mostly Cloudy, With Some Bright Spells’:

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You’d think I’d have collapsed after all that, but no: I took Cookie (next door’s Norfolk Terrier) out for a walk. It was sunny; I am all for seizing the moment, particularly when sunny moments are so few and far between. We went on a short walk through the woods, and stopped to peek at a beautiful orange and black butterfly. I started to feel a bit dizzy on the way back, so we had a little sit down on the bench. That’s our cuddle time. I dropped him home and ran myself a big bath, added a few drops of rose oil, climbed in and closed my eyes for 30 minutes. Here I am getting ready for my bath. I’m so tired! But I’m still smiling. See?

ImageMy limbs feel as though they are hanging on by a thread. It is 4.02pm and I have been awake for – hang on, I failed my GSCE maths so I don’t even know – waaaay too many hours. The thing is, I’m a get-up-and-go kind of girl, not a sit-around-and-watch-daytime-TV-whilst-feeling-sorry-for-myself kind of girl. I never have been, and I never will be.

Gautier says I must take one of my anti-histamines tonight. They’re the only pills which actually send me off to sleep. I don’t like taking pills, but I can’t go another night without sleep. I just can’t. I have a chocolate mousse to make for dinner at a friend’s house tomorrow, a birthday drink in town before that… I don’t know if I will manage the drink bit, but I’ll give it a good go.

Here’s a list of things I do to try to get to sleep:

1. I’ve worn sleep masks, but I don’t like them; I feel as though I’m in a hostage situation and end up having nightmares about exactly that if I do manage to drop off.

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2. I’ve sprinkled lavender oil on the pillow.

3. I’ve applied Neal’s Yard relaxation oils on pulse points, swallowed Valerian tablets, other herb-based pills and warm, (soya) milky drinks. Pfft.

4. I’ve made sure my bed is comfortable, the room is cool, my pillows are the correct height and the room is as dark as it can be. To be honest, it’s not very dark at all, but I’m fond of my wooden blinds and if I do manage to sleep, I feel I’ll never wake up if there’s not some semblance of natural light to tell me that it’s morning. If I do fall asleep in a dark room – hotel rooms are always dark, as are French bedrooms, thanks to the shutters, then I can’t actually wake up because it’s too dark, so I keep going back to sleep until I find out I’ve missed lunch, or worse, a flight. D’oh!

5. Sometimes, I get out of bed, but I don’t like doing that. It’s cold, in the middle of the night. I head downstairs, make myself a chamomile tea and sit on the sofa for 30 minutes or so, flicking through a magazine. I go back to bed; occasionally I do drop off, more often than not I don’t. I’ve been known to sit downstairs for three hours, re-arranging photo albums or simply sitting on the floor in tears of frustration and exhaustion, wishing I had a cat, or any kind of animal, which would cuddle me.

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6. I gave up caffeine three weeks ago. I never verged on having the shakes or anything like that, but I thought I’d see if it helped. I’ve actually had a worse (non) sleep pattern since NOT drinking a decent cup of coffee. How’s that?

7. I take cherry juice capsules (they contain melatonin. Am considering just buying a load of melatonin and making a lasagne or something out of it). I also upped my magnesium intake, am not deficient in any vitamins and eat the healthiest diet of anyone I know. I cook everything from scratch. Except for fish fingers.

8. I get outside every day, even if I’m in so much pain all I can do is stand in the garden and breathe in some fresh air.

9. I stretch, I used to do yoga (I find my muscles really hurt after doing it since the fibromyalgia hopped aboard my system so I’ve stopped) and I lie down on my back, knees bent, and close my eyes for 10 minutes each evening.

10. Basically, all the other stuff you read about to help with insomnia that I might have left off the list (I’m too tired to remember them all).

The thing is, the minute I lie down I have a mix of random songs all playing at once, a bit like an out-of-control jukebox. I can literally feel my head spinning.

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I have long-term worries (will we lose our house? Will I have to go to Switzerland in a few years’ time on a one-way ticket to a special clinic? Will I ever get a publishing deal, some kind of work, some stability somewhere in my life?) and then the short-term (will I make it to the Post Office tomorrow, will I be able to make dinner, do we need toothpaste? Will I be able to get into town? Will I EVER GET ANY SLEEP?) It’s just a never-ending tub of anxiety from which the lid seems to burst forth the moment my head hits the pillow.

I often go three or four nights with only two or three hours’ sleep, dropping off around 5.30am after being awake all night, then waking at 8.00am just before the alarm goes off. Gautier gets ready for work, and that’s when I send text messages cancelling plans which can be cancelled, and attempt to go back to sleep for a bit. If I can’t cancel something, I get up, shower, put make-up on so that I don’t scare people, down some painkillers and go to whatever it is I have to go to. If I do sleep in the morning, I subsequently miss most of my day. Everything’s backward. If I don’t go back to sleep, I feel so rough that I could cry. I don’t nap during the day, because I fear it will make the not sleeping at night even more catastrophic.

This is why I have fibromyalgia. It is not that I am tired because I have it, I have it because I’ve spent the past 12 years like this, ignoring what my body is telling me, refusing to ‘give in’, or even to relax. I had sleep problems when I was younger, but nothing like this. Being in a permanent state of exhaustion isn’t funny. The fibromyalgia, I feel, has come on because I’ve been pushing myself to do ‘normal’ things every day, since I first became sick in 1999. I think it’s my brain telling me, ‘You need to slow down, I can’t cope with this.’

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Despite being very unwell for over a decade, I have only once gone to bed in the middle of the day. Once! Apart from post-surgery, when I was in a makeshift sofa/snug/bed thing for two weeks. I have never settled down under a blanket on the sofa and just watched a film, or read a book. N-E-V-E-R. I have dinner to prepare, a fridge to clean, ebay items to sort out, a book to plug, clothes to wash, cats to brush, floors to sweep… the list is as endless as my insomnia. But I can’t just ‘stop’. If I stop, I’m afraid I’ll stop forever. ‘Keep going,’ I tell myself, ‘because if you stop now, your whole world will come crashing down.’ I know I’m suffering with depression – seriously, who wouldn’t be? – but I’m managing it with a very American ‘PMA’ (positive mental attitude) and like I say in my book, by seizing the moment and forcing myself to get outside, to get some air, to get the blood pumping and my heart rate up. I also do that by watching Thor. Or Iron Man. Yeah, mainly Thor.

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So, I’m trying to listen to my poor, tiny brain – at last. Here’s what I now know:

1. When I have had no sleep, I cannot expect to drive on the motorway, clean the entire house or write anything which makes sense. I can clean the bathroom, I can nip to the Post Office, and I can write a birthday card or an ebay listing. That’s about it.

2. When I feel as though my limbs are pulling in opposite directions, as if I have been strung up by my hands, head and feet to the walls, the floor and the ceiling, and my muscles tighten so much that I can barely breathe, let alone move, I climb into a hot bath, and cry. Then I say to myself, ‘This will pass.’ Initially, I was wrong. I kept saying it. A week or so later, I am right. I thought I’d feel that pain every day; I haven’t.

3. Ebay items can wait another day to be sent out. Nobody will die if I don’t make it to the Post Office. It is not as though I am couriering a heart to a transplant patient.

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4. The house is never actually dirty. There might be muddy cat prints on the kitchen floor (it’s bright lime vinyl, which doesn’t help) and a few fur balls flying around, but you’ll never see a dirty hob, piles of greasy plates in the sink or maggots sprouting from month-old spaghetti bolognaise. It will just be a bit dusty in places. Cleaning can wait. That was actually the hardest lesson of all. I LIKE STUFF TO BE CLEAN. If I don’t do it, who will? Men don’t care about dirt, and that’s a fact. I wish I had been born with man’s parts instead of lady parts. Life would be loads easier.

5. If I have a good day – as rare as finding a £10 note on the street thanks to the non-stop rain we’ve had for the past, I don’t know, ever – I need to make sure I don’t go nuts. Instead of walking Cookie for 30 minutes, letting the pain in my hips dictate when to stop, I need to ration myself to 10 minutes, a sit down, and maybe another 5 minutes’ walk. Or even just take him over the road to the green and stand there while he goes round and round on the lead. He’ll still love me. It’s not big, or clever, to wait until I hurt to think, ‘Right, I’d best stop that’. Same goes for cleaning. I tackle one room at a time, even if I feel reasonably OK. I have to learn that that is ENOUGH for one day.

6. The main thing I’ve learnt is that I’m a massive idiot for not realising this stuff sooner. Duh!

Next week: How I met some lovely people and just about got through my after-dinner speech at the IMID Patient Summit in actual real life London town. Yikes!