Following a look at the Lupus UK website I found a banner informing me of this and telling me to spread the word. Along with a challenge set by Sara Gorman, the person behind the Despite Lupus blog to tell people what lupus actually means, I didn’t have much of a choice not to.
So, what actually lupus? I’ve noticed that one of the only things people can say to me when I tell them about my diagnosis is “Isn’t that the thing that it never is on House?” Yes, it is. It’s also the thing that the magician ended up having, but everyone seems to forget about that one. But apart from that, no-one I speak to really knows what it is.
Systemic lupus erythematosus, or SLE as life is far too sort to waste time saying all that, is an autoimmune disease that can go for anything, and I really do mean anything. Joints, skin, kidneys, blood, CNS, everything. I’m fairly lucky in that mine only likes my skin and joints, but there are plenty of people out there who have had major organ involvement.
But what does that actually mean?
Joint involvement means that there is a level of arthritis associated with SLE, but, thankfully for us, it’s not usually as bad as with rheumatoid arthritis. That means joint pain, joint swelling and joint stiffness which are all related to joint capsule destruction. And it hurts. A lot.
Skin involvement is a little more complex. The one thing people seem to know about SLE is the association of the butterfly rash, a distinctive reddening across the nose and cheeks. That’s relating to another part of skin involvement: photosensitivity. That’s a big word, but all it really means is an allergy to UV light, which is found in sunlight and fluorescent lights. Have you ever noticed that when your face gets sunburnt, it’s mainly on your cheeks and nose first? That’s what happens with the butterfly rash; the cheeks and nose are the first to get exposed to UV rays from the sun, so that area is more likely to get a rash. But the photosensitive rash isn’t only limited to the face and it can be wherever the skin is exposed. I’d commonly get rashes along my arms and chest that only appear when I’ve been in the sun. Also relating to photosensitivity is generally feeling crap after being in the sun. Joints can swell as well, which is very hard to explain to people if you’ve just been sitting and suddenly you’ve got old woman hands. Also relating to the skin is getting mouth ulcers. Not just the odd one, but I’m talking about a mouth full of ulcers. Most people would find that these don’t hurt, and I’m the same, but sometimes one gets bitten or rubbed against with food and it gets a bit more than just annoying. There are loads more skin-related things, but those are the ones that I have to deal with so I can’t share personal experiences with them.
In fact, that’s the only real sort of experiences I’ve had with my lupus. I’m fairly lucky in that sense. Well, apart from some pretty bad reflux, but that may have been because of the treatment, not the actual SLE, and I’ve no idea when I next see my gastroenterologist to ask him. I have got a number of related conditions including Raynaud’s where my hands and feet turn red, blue and white whenever there’s a slight drop in temperature and the agony when they thaw out again, fibromyalgia which is secondary to the lupus but means more pain and sleep disturbances, and possible Sjogren’s, another autoimmune disease that goes for the tear and saliva glands.
I’ve still got to describe what it’s actually like to have lupus, the pain, the fear of flares where everything gets worse and the constant poking by doctors. Every day I have to take a cocktail of drugs to help keep me upright and relatively pain free. Every day I have to check what the weather’s doing to see if I need to cover up from the sun or find my 3 pairs of gloves to wear to prevent the glorious rainbow colours my hands will turn. I have to work out what to wear depending on how well my hands are working. If they’re really sore and stiff there’s no point in even thinking about anything with buttons or laces. I have to eat at set times to help control the reflux and I’m only allowed to eat certain things. I have to take loads of breaks whenever I read something thanks to concentration and memory problems.
But the hardest part of lupus is having to say no. Sometimes all I’d love to do is to go out and see different people. Yes, I’ve got a supportive family and wonderful friends who help me, but there are times when it’d be nice to get a break from them and to see other people. That sounds as though I’m trying to break up with them! I’ve actually lost count of the number of times I’ve had to say no recently, the number of times I’ve had to take a step back from life in general to deal with lupus. It’s hard but quite often it needed to be done as there is no point in me going out and being in agony when I could be at home in agony, but have the opportunity to curl up with a blanket, a book and a good cup of coffee.
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