Tag: SLE

Give it up

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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

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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

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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

Lupus fashion

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So maybe today was just a freak, and tomorrow we’ll be plunged back into wintry greyness, but it’s getting to be that time of year when I have to start covering up when I go outside to prevent all that UV from triggering a flare of my lupus symptoms.

“Covering up” entails wearing high-factor suncream and covering my head and shoulders (at this time of year, at least; in midsummer I try to hide as much skin as possible). I have an array of hats and scarves with which to achieve this and I have mostly gotten over the embarrassment of looking like a twat, or at least standing out from the crowd. What I have not yet perfected is how to wear headscarves properly. Why don’t they teach us this stuff at school?

I can do your basic piratical tied round the head with ends trailing at the back look. When I haven’t had all my hair chopped off recently I can do a decent hair in a bun with scarf tied round in a sort-of cottage loaf thing. What I can’t do is anything remotely elegant. I want to look like a 1950s film star when I put a headscarf on. Or a mysterious Arab beauty (except showing my face so not all that mysterious).

Is there anyone out there who can provide me with some much-needed guidance?

Headcover

Undecided about mornings

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One of the joys of having lupus is the many blood tests I have to have. Okay, that was sarcastic but the regular trips to the GP surgery are actually quite fun. Maybe not fun. Diversions from the normal routine that aren’t too unpleasant. That’s closer.

I always book my blood tests for first thing in the morning on a work day. I stroll up the hill against the flow of people heading to work or school, spend about two minutes with a nurse and then amble on my way to work. I’ve warned my manager that I’ll be a little late in, so I’m in no hurry. I sometimes need a pick-me-up after having blood drawn so I treat myself to a sugary breakfast. I get to see a slightly different view of my neighbourhood, like the lollipop man outside the local primary school who makes crossing the road so much easier. And it’s morning, which is a time I think I like. Probably.

The blood test itself isn’t too bad these days. I’m inured to the whole thing. I’m lucky that the two practice nurses are great (that’s nurses at the medical practice, not nurses who are practising on me, obviously, though I did have a student nurse draw my blood once – it wasn’t pleasant, I had to lie down for a while). You might think all nurses are equally capable of taking blood but believe me, you’re wrong. I show them which vein looks good and we chat a little about holidays, family, weather, whatever. Before I know it the tourniquet’s off, the plaster’s on and I’m saying goodbye. While my health is steady as it has been all year (I’m not superstitious but I feel I should touch wood or something here) I only have to have one sample taken, which is a whole lot better than the armful I used to give every month.

But regardless I’m always a little nervous beforehand and a little relieved afterward. As I was today. It was particularly cold, with a biting wind and I was worried I’d chosen a bad outfit for getting at my inner arm easily. But it all went fine and I was feeling cheerful as I bought my cappuccino and brownie from A Cappella, then strolled down the road sipping at my drink, having a nose at a shop that’s opening soon and someone’s house covered in scaffold. Now maybe I wasn’t paying enough attention to where I was going or maybe I wasn’t fully awake still but personally I blame the police siren and the car that looked like it was about to mount the pavement and head straight for me. Either way I walked into a wall and spilled my coffee all down me. Perfect.

My day wasn’t ruined but I’m still uncertain about this morning thing. It might just be the lupus, but another hour of sleep sounds a whole lot better than an early morning walk to me.

Comfort clothes

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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.

10 May is World Lupus Day

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I have lupus and it sucks. It really does. But I don’t have it nearly as bad as most lupus patients. I am a mild case. I manage to have a full-time job, a social life and fantastic support from my family and friends. Today I urge you to find out more about lupus. Read about it at The Lupus Site, Web MD, Lupus UK, St Thomas’ Lupus Trust and London Lupus Centre. Pass on those links. Talk about it. Stop this from being the disease that no-one knows or understands.

I was diagnosed with lupus three years ago. The blood tests were conclusive (something that is not always the case) and the huge relief at finally having a name for the mysterious ailment that had been troubling me for over a year soon gave way to nervousness at being diagnosed with something I knew nothing about. At the rheumatology clinic I was handed a slim leaflet produced by Arthritis Research (the two diseases share a lot of symptoms and, indeed, patients) and told not to worry, I appeared to be a mild case. But a mild case of what exactly?

The leaflet was essentially a list of symptoms and medications. As lupus symptoms vary from fatigue and headaches to organ failure and death, this was not very comforting. So I turned to Google. The Wikipedia entry was even more worrying. It talked a lot about the more serious symptoms and some unattractive related ailments. One of the doctors I had spoken to had warned me to be wary of looking lupus up on the internet because outside of the UK it does tend to be a much more serious disease. However, a scan through some lupus chat boards proved that there are British lupus patients having a really bad time of it too.

The problem with a disease like lupus is that the symptoms are so many and varied that it can be hard to pin down what is the disease and what isn’t. For those first couple of years, every ache and pain caused worry as well as, you know, pain, because I was concerned that I might have developed a new symptom and if that was true then it might never go away.

Because here’s the thing: lupus is chronic, systemic and there is no known cure. Although my rheumatologist says that the symptoms I first presented with are likely to be the ones I always have, there’s no guarantee I won’t develop new ones. And I can learn ways to limit or cope with the symptoms I do have, but they will never completely go away.

I have learned to cope most of the time. My fatigue specialist has gone from handing me tissues for the inevitable tears to commending me on my healthy appearance. But it comes at a price. My life had to change. In my mid-20s I suddenly had to cut my social life down to almost none. I have to carefully space out what activity I do, but at the same time do enough exercise to stay fit (because fatigue is a big problem for me and the less fit you are, the quicker you tire). It’s a real balancing act that is best explained by the frankly brilliant Spoon Theory. I have to be über prepared for any trip out of the house – in winter, I must take extra care to keep my hands and feet warm and for the rest of the year I have to wear high-factor suncream and cover my head at the merest hint of sunshine. I have learned to love TV in a way I never used to because all-too-often I am incapable of doing more than staring at that screen.

What I haven’t yet dealt with is the guilt. I am constantly letting people down. It’s not my fault and I don’t want to do it, but I am always cancelling plans with a friend or taking time off work on sick leave. I hate that I have to be that person. I am so so grateful to my friends and, most especially, Tim for accepting and caring for the new lupus-fettered me.

It could be worse. I know that. I have a good life, by any standards. I’m happy. But there are bad days. There are days when I am thoroughly fed up with being too tired to do the things I want to do. There are days when I desperately want to read a book or plan a fun trip but my brain is not functioning well enough. And the frequent pain and blood tests are no barrel of laughs either.

So, yeah: lupus sucks. But it gets easier to deal with when more of the people you know understand what you’re going through every day, when your GP has read up about it and can advise you on the little things like flu shots and dry hands. So spread the word. And if you’re feeling generous, a donation to Lupus UK will always be welcome!