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Mostly Cloudy, With Some Bright Spells
In my last blog, I wrote about what I call ‘payback pain’. You know, you wake up relatively pain free (I say ‘relatively’ because I’ve woken up actually completely pain free twice in the past 12 months) and decide to do something nice. You have to seize the moment, right? If the sun decides to come out at the same time as your hips/spine/neck/legs/arms decide not to give you too much bother, then it’s all systems go.
I have three standby plans when this rare phenomena occur:
Plan A: I knock for Cookie, next door’s lovely little Norfolk Terrier. Take him for a rubbishly slow walk in the woods behind our house. Stop at the bench, 5 minutes in, and have a cuddle and a snack (a Babybel each). Carry on and exit the woods when my hips start to hurt (not long after the cheese break). Sometimes I manage to persuade Gautier to join us. He doesn’t really get the whole ‘seizing the moment’ thing; I have to beg him to come along and I still get a ‘no’ more than a ‘yes’. It makes me sad.
Plan B: If Gautier’s at work and Cookie’s not home, and if I can move my neck like a normal person, I drive to the seafront in Hove. I’ll park up about 10 minutes’ stroll from the Italian ice-cream place and say hello to every passing dog and every swooping seagull, then pick up a mint choc-chip or pistachio ice-cream and sit on a bench overlooking the sea.
I can’t sit on the bench for very long, or the pain inevitably sets in, but I can manage about 10 minutes before I have to move, and what a glorious 10 minutes it is. I stroll back to the car covered in ice-cream and usually spoil the mood by stopping at Asda. Us ill people have to do stuff while we can, see, even if buying cleaning products and supermarket knickers kind of knocks the shine off things.
Plan C: I go into town and meet a friend for coffee. Not lunch (can’t afford it), but a coffee. And not in Starf*cks or Costa Fortune or any of those horrid, stinky chains. I like to keep local businesses going with my one cappuccino a month. I’m sure they’re grateful #lastofthebigspenders
Since my little outing to the Olympics – and bear in mind I was only observing, not taking part – I have had 12 consecutive days of straight up pain. New pains, at that. Long-lasting neck pain. Pain all the way down my arms and legs. The usual constricting pain around my ribcage, the shooting pain which radiates from the middle of my spine, and the dull, frustrating, ‘Hello, I’m still here! Yes, me! Ha!’ pain in my hips. The only parts of my body which didn’t hurt this morning were my face, my hair and my toes. I kid you not. I have cancelled everything I planned to do this week, from a birthday lunch with friends (no, I’m not still milking my birthday, I mean hers) to taking a load of really decent stuff to the children’s hospice charity shop in town. I made it to the post office on Monday, and that’s it. Whoopee!
Today I feel as though I’ve been kicked in the back by a donkey, then run over by a Renault Espace, then punched in the arms by a bare-knuckled gypsy and finally picked up by an eagle and dropped on to the pavement when he realised I was a bit heavy to carry back to the nest. Proper. Fed. Up.
The most infuriating issue with ‘invisible’ illness is that it hurts. I mean, it really hurts. Walking with a stick or using crutches doesn’t help me. The pain is in my upper body as much as in my legs; it doesn’t work. I just do everything in slow motion – walking, reaching for something in the supermarket, putting things in my trolley (a basket is my enemy; any more than a couple of apples and a packet of Jaffa Cakes and I can’t carry it) and putting bags into the boot. I pack my shopping so slowly that people behind me start sighing; that’s when I say, ‘I have arthritis; I’m not doing this slowly because I’m trying to savour the moment.’ Of course, were I holding a walking stick, or in a wheelchair, I’d not have to say anything. Well, maybe I would. Some people are just nasty. I wish people would look at my face; that’s where you can see how much I’m hurting.
Here is a pile of stuff which is supposed to help with the pain. Shame you can’t read any of the labels. Sorry:
I’ve been on Etanercept (Enbrel) since 2004. That’s a long time. I lie awake at night worrying about what this treatment is doing to my body; I read of cancer scares and kidney failure and livers giving up. There is a warning which comes on the first page of the brochure for one of the anti-TNF therapies; in a nutshell it’s saying, ‘Yeah, chances are you might get cancer, but it might be worth the risk if it helps with your pain.’ The cover of the brochure shows a bunch of people – a good ethnic mix, naturally – all seemingly delirious with excitement at the idea of injecting themselves with this drug. I would like to design and write these things. We are sick, not stupid. Patients in need of biological therapy are at their wits’ end; we deserve honesty, we deserve answers to our questions and above all else, we deserve to know what risks we are taking. I have a friend who developed alopecia after starting a new anti-TNF treatment. When I mentioned this to my rheumatology nurse, her answer was this: ‘Well, it affects people in different ways; just because your friend’s hair fell out, doesn’t mean yours will,’ with the same tone Gok Wan uses to tell women that not everyone suits a wide trouser. So, I’m wondering how other people deal with their pain. What works for you?
I’m not talking about watching a DVD or eating a big slice of chocolate cake, I’m talking about conventional or alternative medicine. I kick off with an Epsom salts bath followed by 30 minutes of gentle yoga (when I can get in the bath or on the floor in the first place, that is).
I take Paracetamol or Co-Codomol on a daily basis, and have just discovered Syndol. I like that. I can’t take Dihydrocodeine (even when accompanied by food and an anti-nausea tablet) because I always feel sick for 24 hours after taking it. I can’t go back to bed or lie on the sofa watching films, either, no matter how exhausted I am. I have to be doing something, because the less I do, the more I hurt. When I hurt, obviously the less I want to do. Talk about unfair.
I use heat patches on my shoulders and hips. Gautier rubs Deep Heat into my shoulder blades and up and down my spine. I’m going to try lavender oil when the pain is concentrated in small areas, like the side of my neck, to see if that works. I would rather smell like Provence than a men’s locker room.
I must admit that I also use alcohol to dull the pain. Not in the morning, and not all the time, I hasten to add, but I’m not going to lie – it’s more tempting to down a couple of home-brewed Turkish Delight vodkas with ice-cold tonic at six o’ clock than it is to clog my stomach up with codeine.
There, I’ve said it. I don’t care. I don’t have children to pick up from school, I don’t have a job to hold down (unfortunately), so it’s only willpower, a lack of disposable income and the thought of looking like Ronnie Wood which keeps me from becoming an alcoholic. If I did end up like that, my role model would be Sue Ellen from Dallas; although her hands shook and she drank neat Scotch (ugh), she always looked well groomed. Silk blouses, heels and plenty of jewellery – I reckon I could rock that look now I’ve hit 40. I just need someone to help me get dressed and pour me a drink. And get me a gun, of course. Someone call Gok Wan, I’m sure there’s a Channel 4 series in this…