World Lupus Day 2015

Logo_world lupus dayIt’s that time of year again when I reflect on having lupus, on both how it sucks and how lucky I am compared with many other sufferers. I am aware every day of having lupus, of the effect it has on my life, of the constraints and limits it places on me, but also of the many common lupus symptoms I don’t suffer.

I was diagnosed with systemic lupus erythematosus in 2007 after about a year and a half of tests and investigations into why I was so tired all the time. After diagnosis I realised that there had been other symptoms too that pointed to lupus, but it hadn’t occurred to me they were abnormal. By that I mean things like having cold hands and feet all the time (a sign of poor circulation), dry mouth and eyes, flu-like symptoms such as muscle aches. And there were things I didn’t put together until after diagnosis: exposure to sunlight makes me headachy, dizzy and nauseous far faster than sunstroke would, and strong sunlight brings me out in a rash before it burns me.

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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?

The Sunday Salon: All systems go

The Sunday Salon

After last weekend‘s perfect mix of activity and downtime, it feels like life has switched up a gear. Evenings and weekends are full of plans, with many more things needing to be slotted in – when will I find time to read?

One thing I did this week was finally get my latest film processed. I took most of it on our holiday in Wales and I’m pleased with how some of the shots came out, though the scans don’t do them justice. We must find a way to display more photos in our house!

Look up

I haven’t been feeling 100% (it happens) so I have been tempted on getting home from work to just stare at the TV rather than read. Which makes sense when my brain is frazzled but the rest of the time I think reading actually makes me feel a lot better than even my favourite TV shows could. What about you – do you read when you feel unwell?

I also went to the zoo with Tim and a couple of friends. We go to the zoo a lot and always have a good time. Bristol Zoo is very good about breeding and conservation programmes and doesn’t have many large animals so I don’t feel animal lover guilt and can just enjoy the cute animals.

Baby turtles

Give it up

When you are first diagnosed with a chronic illness it seems as though you are constantly having to give things up. Good things. Fun things. Chronic illnesses don’t tend to be a death sentence but they often appear to be a boredom sentence. It can take years of living with the disease to work out that you don’t need to live like a monk after all and I have often wished that doctors would try harder to get this message across.

For instance, when I was at university I was diagnosed with irritable bowel syndrome (the first of my chronic ailments). My GP told me to give up alcohol (as a hard partying, hard drinking student, that was bad enough), plus coffee, spicy food, tomato skin and dairy. Just like that. He did say there might be other irritants but didn’t advise how to identify them. Now maybe I was just unlucky. I’m sure other doctors out there have the sense to advise a detox diet followed by reintroducing possible irritants one at a time. I worked it out for myself, but with no advice to follow I did rather a bad job of it. I didn’t keep a food diary, didn’t try to add small amounts of foods and then larger amounts. I just cut things out and then started eating them again and guessed at whether my IBS pains were being caused by a food item or the stress of university.

After many years of trial and error I have now worked out that I didn’t need to cut anything out entirely, I just need to limit my intake of certain things, particularly stress. And the most effective change to my life that reduced stress? Being diagnosed with lupus. Odd how life works, huh?

Of course, lupus brought its own limitations on fun. Never having any energy means rarely doing anything on a week night. Near-constant headaches, joint pains and brain fog mean I often feel antisocial and struggle to make conversation with people I don’t know very well. Avoiding the sun in summer puts me in the opposite mindset of everyone else. I often have to cancel plans, which close friends and family accept (and I love them for that) but it makes it hard to go to gigs or the theatre, stuff that needs to be booked months in advance.

So when I was first ill with lupus, I stopped doing everything, near enough. I became good friends with the TV and the DVD collection. I took everything more slowly, moving house so that I could walk to work and the doctor and the train station. I was bored a lot of the time, but I wasn’t stressed.

Until, that is, I got fed up with being bored. I hadn’t expected to ever be one of those people whose life is work, TV, bed, but that’s who I’d become. I didn’t go out like I’d used to, didn’t take any of the evening classes I’d planned to, even gave up writing, my favourite hobby since I was six years old. Something had to give.

My first saving grace was photography, as I’ve talked about here before. I’d had a camera almost my whole life but it wasn’t until Tim bought us a good digital camera that I really discovered the creative possibilities and found that I wanted to learn all about F numbers and exposure settings and all sorts of things. Here was a hobby that I could do as much or as little of as my diseases allowed me to. It got me out of the house and going for walks. It gave me something to talk to new people about, when the brain fog allowed.

My second saviour? Really good food. I have always loved my food, even if as a vegetarian with IBS I seem like a horribly picky eater. But I discovered that I didn’t mind cutting back on foods that I love, like cheese and ice cream, if I found the absolute best form of that food. I mean, no-one gorges themselves on white truffles or caviar; you’re meant to have very small amounts of it and savour it for days afterwards. That’s how I treat coffee, or chocolate, or alcohol (most of the time). I spread these pleasures out over my week, so it doesn’t feel as though I’m missing out at all.

I’m sure there are people who would look at my life and call it dull. I don’t get drunk (often), or stay up late, or join the latest extracurricular fad. And I do get frustrated with it all sometimes, but I have learned to take life slowly and appreciate the small things and I suspect that makes me happier with my lot than many a “healthy” person out there.

Comfort reading

Crumpets and milk

One of my strongest sensory memories is the smell/taste of buttered crumpets, which takes me back to being very young (primary school) and sitting at the breakfast bar in the kitchen eating a snack while listening to an audiobook on cassette. My favourite audiobook was The Secret Garden and, even now, certain words (“wuthering” and “daffydowndilly” come to mind) can only be said in the voices I remember from that tape, with their Yorkshire lilt.

The Secret Garden

I don’t own a cassette player anymore, but I do still have that cassette because I couldn’t bear to throw it away. Thankfully I have the actual book too, for times when I really need comfort in my reading. (Like now – can you tell I’m feeling a bit lupusy? Yes, it’s a word.)

World Lupus Day 2011

Yes, it’s that time of year again. I had forgotten all about it and then Stephen Fry kindly tweeted a reminder. In timely fashion I am struggling to write very much about World Lupus Day because my lupus is flaring a little and stealing all my words. It does that.

You see, when I talk about fatigue I don’t just mean I feel tired; there’s a whole host of fun that comes with the tiredness. I suppose it’s not unlike a bad hangover combined with lack of sleep – there’s the headache, dizziness, nausea, dry mouth, double vision and, of course, the brain fog.

Brain fog? I remember the first time the rheumatologist said the words to me and I felt such huge relief. That bizarre cotton-woolly feeling of not being able to think straight, of losing words, of not being able to answer simple questions – it’s real! And I’m not the only one!

And this is why events like World Lupus Day are so important. Diagnosis is vital even in “mild cases” like mine and, of course it is life-saving in many other cases. But it’s also hugely helpful for other people to know about lupus and what it means for me and others. And a little more support for research into new treatments would also be a good thing.

To brighten up this post, here is a random old picture I took of a butterfly, because they’re the symbol of Lupus UK.

Papilio thoas

Comfort clothes

There’s a green cardigan that I have a tendency to wear when I’m feeling a bit rubbish. It doesn’t have buttons or a belt so for it to warm me effectively I basically have to hug myself. It’s surprisingly comforting. On such days I also tend to wear flat shoes. The only reason I can think of for that is that heels are effort. Rubbish days are definitely not about making an effort.

I wonder whether anyone has noticed these proclivities of mine. People who are around you every day can be surprisingly perceptive. Well, some days they can. Of course, I’m feeling rubbish so often that perhaps I should reword all the above to say “more rubbish than usual”.

Or should I? The thing about chronic illness, or a thing at least, is that you kinda get used to feeling ill and while sometimes the fact of feeling ill, especially if it’s lasted several days, is enough to make me hate the world and want to crawl into a hole, generally feeling ill is just that – physical pain and/or discomfort – and is not necessarily related to my mood. This can get confusing for me and for the people around me. But it’s a survival mechanism as much as anything else. If I was miserable all the time that I felt ill I’d be pretty depressed. And depression is common among the chronically ill but thankfully I have not suffered that extra blow.

I do find it helps to have a handful of ways of dealing with feeling ill, stuff that makes me feel cheerful while requiring little or no energy input. There’s certain TV shows of course. It’s a cliché but Friends never fails to make me laugh. (I know, I know, I should lean toward something less mainstream and more British if I want to continue considering myself indie.) This year I’ve discovered gardening, which is great except for when slugs and snails and caterpillars eat all my beautiful plants. And there’s curling up under a blanket and daydreaming. This requires less brain power than reading and somehow feels more productive than watching TV.

And when I’m feeling a bit rubbish but still capable of dragging myself out of the house, there’s always that big, slouchy green cardigan.