But seriously, lupus sucks

World Lupus Day

Please forgive me for being a bit introspective today, but I seem to have lupus on the mind. More than usual, that is. Not only did I completely forget that Friday was World Lupus Day (a date that I have marked every year since 2006, when I was diagnosed), but I just finished reading a book with a character who has lupus (review to follow).

It’s inescapable, lupus is my Big Bad. Yes, I did just compare my illness to an extra evil character in Buffy. It’s my prerogative. Also, it’s quite a good analogy – the lurking evil, waiting to strike when least expected, capable of much worse than it’s made me suffer so far. I can almost picture the sneaky demon enjoying the little irritations it plants for me every day while biding its time to do something much worse.

There may not be any “much worse” for me. Maybe I’ll carry on as I am now for the rest of my life, struggling a little but basically okay. If I’m lucky, the worst lupus has in store for me is the fear of what it is capable of (it’s a long scary list, I won’t repeat it here). Here’s hoping.

But it’s not just the more serious symptoms of lupus that scare me, it’s also the knowledge that it will probably never go away (a small number of patients go into long-term or even permanent remission from symptoms) that is pretty darned frightening. Perhaps that’s the wrong word, but it’s more than irritating or upsetting, it’s…well, a bunch of swears would most eloquently express it, I’d say.

One consequence of having a chronic illness is that you blame everything on it. It’s an easy excuse for all those things you put off or don’t do at all. I mean, obviously some stuff in my life is in fact caused by lupus. And most of the time it’s fine, whatever, everyone has their crap to deal with, I know that. It can just be so frustrating, the gap between what I feel that I am capable of and what I actually achieve, all those evenings I’d planned to write a short story or pick out curtains for the spare room or 101 other long-neglected tasks or hobbies, and instead I get home from work and find that emptying the dishwasher uses up the last dregs of my energy.

But then, doesn’t everyone feel like that? Maybe not the chronic fatigue part, but certainly the not getting round to stuff, the not achieving stuff. I was a teensy bit overambitious when I was young, I expected a lot from myself. And there’s always someone to compare yourself to who seems to be doing it better. Hard to avoid that one, it’s basic human nature.

This has all been a bit rambly and I’m not sure what I’m trying to say. I’m feeling sorry for myself and now I need to snap out of it and get back to being basically happy and frankly lucky to have the life that I have.

So…books, they’re nice, right?

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