I think it might be time to get personal. I feel comfortable enough now to unleash a few intimate secrets about myself, tell a few true-life tales to endear myself to the masses and, to heck with it, I just feel like sharing today.
I have a problem. It is a problem I have had for about 15 years or so now. A problem for which there is no cure and a problem which is difficult to talk about. I have Raynaud’s Disease…did I hear a gasp? A shock-horror raised eyebrow and a hand to the lips? No, I thought not. It is not really deserving of such a response, is it really? Given than 10% of the populace have it, it isn’t life threatening or painful and nothing much can be done about it.
What is it? Simply put, it is a case of abysmal circulation and poor body temperature management – I get very, very cold and very, very hot (normally at the same time, one after the other). I am a rainbow woman with extremities that can turn from blue to pink to red within seconds. I can be both shivering and pink of cheek, hot-headed as hell with feet of ice. If you want to be sure to please me with gifts then socks, winter woollens, fans, hot-water bottles and large financial contributions towards my heating bills are all very well-received.
I was first diagnosed at the age of 22. I was getting a tetanus jab and arrived at the GP surgery half-frozen and very flushed. The doc gave me a cup of tea and asked if I was planning to move to the southern hemisphere any time soon, as recommending a change of climate and offering Adalat pills, were all the medical profession could do for Raynaud’s sufferers like me. Knowing that it is a medical condition doesn’t really help much, truth be told, but at least I finally realised that the people around me were not all feeling the same way and hiding it better. When people would flap around, shiver and make “brrrr” noises, I would think: Aha! They too will barely be able to count to 20 when they feel as though they have icicles forming on their digits. They too will need to sit in a hot bath for half an hour if they lose feeling in their feet and they too will always have to put on a thick jumper and pair of socks when the sun goes down at the end of a warm summer day. Apparently, not so.
When I am very cold, it can be extremely uncomfortable, not like breaking a limb or being stabbed, but it is very distracting. As the body reacts and tries to remedy the problem, it goes into overdrive and as bits of me turn from blue to red, this is all I can think about and is the part of the problem which bugs me the most. When I was younger, the flushing and blushing, and the randomness of the attacks was most frustrating because I was more self-conscious then and never liked being out of control. I can handle that side of things now, I don’t like it but I generally think: F### it! I’m not doing it on purpose and there must be worse problems out there than changing colour in public. Now, it is appearing odder than normal (maybe even rude) and being unable to think straight, while my body re-orders itself, that causes me the most anxiety. But even this is getting a bit better, I think. Mainly because I take Raynaud’s seriously these days and try to accept my unavoidable oddness and eccentricity as a badge of honour rather than a poison chalice.
A turning point for me was when I went to the Fleadh Festival in Finsbury Park with some friends and it rained. It rained a lot and we were all soaked through. It was early summer and a bit of water never hurts anyone (as long as it isn’t iced) but in this instance I wasn’t anyone. It took about half an hour or 40 minutes for me to lose feeling in my hands and for the shivering to become noticeable to the world at large. Like a nit, I had hoped that the sun would come out and all would be well but even if it had I would have needed some additional help with my reheating. So my friends and I abandoned our prime location at the front of the crowd and visited the St Johns Ambulance people who put me in one of those aluminium capes for treating hypothermia, sheltered us all from the storm and fed us tea & biscuits. Tea isn’t just tea for people like me, it is part of a long-term treatment programme (the biscuits are immaterial, though enjoyable).
After the Fleadh, I realised that I couldn’t really ignore Raynaud’s. It wasn’t wholly debilitating or dangerous (at least not in my case, as I have a benign version of the disease) but it also wasn’t just a niggly ache or a temporary twinge. It had the potential to ruin events and holidays, to inconvenience those around me and to take me out of action for an hour or so, if I didn’t manage it properly.
I now don’t smoke because of Raynaud’s – the sneaky social cigs I enjoyed as teen and early twenty-something had to be abandoned.
I now have nicer nightwear than daywear because of Raynaud’s – I don’t like waking up in the night, frozen half to death.
I now always have a spare kettle, in case my regular kettle breaks down and leaves me tea-less.
I now never stay anywhere that doesn’t have a bathroom, as well as, or instead of, a shower room.
I now always serve hot drinks in enormous mugs because then you can wrap both hands around them and keep your mitts warm and toasty.
I now know that three pairs of socks are better than one.
I am not a hermit or a homebody because of Raynaud’s (shyness is probably more of a contributing factor to my love of all things domestic) but it certainly doesn’t hurt to stick close to home and enjoy its comforts. One of the only pieces of advice given by the medical profession to those of us abnormally cold-of-toe and pink-of-cheek is to “avoid the cold”. How better to accomplish this than to stay at home, close to the kettle you know & love, within easy reach of a hot bath and surrounded by duvets of many tog.
And let us not be all doom & gloom about it, like most things, even Raynaud’s has its up-side. I look undeservedly healthy without having to try very hard, thanks to a permanent rosiness of cheek. Over the years, I have also found that the day after an attack (usually accompanied by the consumption of a glass or two of alcohol – during an attack, getting drunk is impossible but looking drunk is inevitable) I have the clearest, plumpest, loveliest complexion. It, regrettably, goes back to normal by the evening but, still, I imagine that all the facials fanatics out there get similar results and suffer similar, though slightly different, amounts of discomfort for far more cash than the cost of a glass of house white.
The timing of this post is due to my having had a trickier than usual week. My temperature management has been poor at best over the last 10 days and, on Sunday night, I messed up an otherwise wonderful night (which I had been looking forward to) by accepting a glass of beer (just the one, one is all it takes), shortly after coming in from the cold, which sent my body into meltdown. My face turned bright pink and my temperature skyrocketed. Alcohol can sometimes act like an IV of hot water – not always, that would be too reliable, just sometimes – and because Raynaud’s is triggered by cold and stress, the more exciting or entertaining the situation, and the more wintery the weather, the more likely I am to turn into a disgruntled, monosyllabic, blushing belisha beacon – or, to use a seasonal reference, a moody Mother Christmas with hot flushes.
Unfortunately, once an attack starts there is nothing much I can currently do. If I am at home with friends and (best case scenario) in a cosy, dimly-lit room, it doesn’t really matter. I drink something hot or cold, wrap up warm or take off a layer, sit down, apologise for acting a bit odd and wait. If I am out, doing stuff, I can go home or soldier on and pretend nothing is happening. I did the latter on Sunday night and I am glad that I did because I had fun in spite of my self-consciousness – I was at one of the Godless shows, an event which raises money for the New Humanist magazine and The Rationalist Association – but, oh for the love of Dawkins, it was exhausting and maddening.
So I think the time has come to return to my GP and finally accept some Adalat for special occasions. Life is too short to have to waste time and energy explaining to interesting strangers why you are turning puce and wearing your coat indoors.