I had forgotten how much I hate November. I don’t know why I’m surprised by how I feel when it comes along, but it seems to be worse with every year.
On 2nd November 2001 I was admitted to hospital with what turned out to be toxic megacolon. It took five days before doctors realised that I was dying. I lay in the hot, sticky hospital bed listening to the fireworks going off all around me, wishing more than anything that I was standing in the park with a toffee apple and a sparkler watching all the beautiful colours explode against the dark sky. Fireworks are used at the end of celebrations – at weddings, on New Year’s Eve – and yet here I was, miles away from my family whispering ‘Help me,’ at the nurses passing by, a futile exercise if ever there was one, while all the whooshes and whistles and explosions suggested togetherness, joy and excitement. It would be like letting off a party popper at a funeral – highly inappropriate and very upsetting for everyone.
Fourteen years later and I still feel the same. I suppose it’s like mourning a loved-one; there’s no getting away from the reminders. It’s not just the fireworks, it’s the smell of November, the sudden change in the weather, the drop in temperature which just seems to come out of the blue. The sky changes colour, the air has this kind of thickness to it… it even smells different. I can taste it, this metallic tang which sticks to the back of my mouth and makes me want to throw up. November is the month where everything good has gone: the leaves on the trees, the flowers in the garden, the sunshine… to me it seems fittingly bleak. It represents unwelcome change and loss, which is exactly what I went through all those years ago. Nothing good came of it. I almost died. The second operation almost killed me. The third operation, the only one which went well, took place exactly a year after the first one, to the day. What are the odds of that? And that’s not all. My mum’s mum died in November. I was nine years-old when she passed away; my brother was just a few weeks old; my mum was six years younger than I am now. My nan had bowel cancer; twenty years after watching her slip away my poor mum watched her daughter dying as her diseased bowel failed her, too. I hate November, as much as you can hate a month for anything, and I think my body knows it, too.
This week I have endured more pain than I have in a long time. Well, that’s what I thought, until Gautier reminded me that I always have ‘trouble in November’. I have had such excruciating pain down my right side, from the ligaments in my groin affecting my ability to walk to such acute pain in my neck and shoulder that I felt physically sick. The cartilage and bone is painful to the touch; I feel as though I’ve been thrown from a horse. I have pain from three conditions – ankylosing spondylitis, scoliosis (not just one, but two – lucky me!) and fibromyalgia. I would say that the pain just blurs into one, but I can pinpoint exactly what condition is causing every bit of pain. Now I’m not good with opiates, they’ve always made me sick, but here I was with the pain so bad it was making me sick anyway so I took them. I have liquid morphine, dihydrocodeine and various other pain-relieving stuff to get me through times like this, but I can’t bear to take them. In the end, I did. This is on top of the anti-TNF therapy I inject twice a week, and all the other stuff I throw down my throat to attempt to keep my intestinal ulcers from multiplying and my inflammation levels down. Here’s just a bit of it:
The pain was a little better, but the nausea got so bad I couldn’t stand it. I couldn’t sleep, I couldn’t get comfortable in any position (no change there) and I couldn’t even dress myself. I just wanted to cry. Gautier and I don’t have the best social life, as you can probably imagine, but we had planned on a nice seafront walk and a trip to the cinema this week. We didn’t manage either. I spend half my life making plans and the other half cancelling them. I’ve left the house twice – once to pop next door to cuddle Cookie and let him out for a wee (Cookie is a dog, by the way) and once to see the sheep which are grazing behind our house.
Yes, you read that correctly.
We have sheep grazing behind the house. I’m mad about sheep. I love them. They’re only here for a little while and I insisted that despite the dizzy spells and problems with my leg, I needed to go. We went. They were lovely. They all had tails and although they refused my offer of fresh vegetables (yelling ‘HELLO! DO YOU WANT SOME CAULIFLOWER?’ seemed to make them a bit uneasy) it was half an hour very well spent. Here are said sheep. Lovely, aren’t they?
So it’s taken me a week to feel able to write this blog, and I’m not out of the woods yet. I know it’ll be a few days before I feel able to drive – and my definition of ‘able’ is not the same as most people’s. If my arm doesn’t snap off, I consider it safe to drive, even if it makes me cry. Really. I so much wanted to see the poppies at the Tower of London, but I can’t see that happening. We hadn’t been before now because in all honesty, I’ve felt really rough for about three weeks, and I didn’t fancy being swept up in swathes of tourists and being stuck in a massive crowd. I don’t like crowds at the best of times, but when I’m in a lot of pain, I can’t think of anything worse than being jostled or unable to get to where I want to go. Being sick makes me feel so vulnerable; how many times have I been crossing the road only to find that the driver of a car or a lorry doesn’t slow down, but expects me to speed up? How many times have I frantically waved my arms to say, ‘STOP!’ because I don’t walk with a stick, I’m not in a wheelchair, you can’t SEE that I’m in pain so you just expect me to run? The same would happen in a crowd; nobody would know that bumping into me would leave me doubled-up in pain; nobody would know that having to stand on the tube is my idea of hell; being squashed, being told to ‘move down’ when there is nowhere to move to, trying to hold onto something so high above my head that I can’t reach it to steady myself because my arms don’t go over my head… nobody knows but me. Well, nobody but me and the thousands of people out there with ‘invisible’ illnesses who show no outward signs of the pain we’re in. I know I’m not alone, but it certainly feels like it sometimes.
So right now I have no choice but to stay home and wait it out. I want to end on a positive note, though. Last week, before I couldn’t go out, I went shopping. I bought some hair dye, some thermal socks, a nice jumper (mum will be pleased as it has a big neck bit to keep me warm. I have a habit of having a bare neck and then complaining that I’m freezing cold) and a new hat. I then found a nice cardigan in the charity shop AND three books. I love buying second-hand books, it’s my absolute favourite thing to do.
Other than to visit sheep.