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?

October is Lupus Awareness Month

Lupus Awareness Month

Yes, it’s lupus awareness time again. But rather than regale you with yet more tales of how tired I am feeling, I shall refer you to better bloggers than I who have covered lupus experiences of their own.

Lupus in Flight is written by poet Shaista Tayabali and combines her lovely poems with tales of daily life and doctors. She has unfortunately faced the harsher side of lupus, including many a hospital stay, but her voice remains one of joy.

It’s So Not Sexy is written by singer/songwriter/actress Maurissa Tancharoen Whedon, who may just be my personal hero. Like Shaista she has had some pretty low lows from the evil that is lupus, but she remains a super cool person and, thanks to some friends in celebrity places, is getting the word out there about lupus.

As always, if you want to learn more about lupus, I refer you to Lupus UK and the Lupus Foundation of America. If you have lupus yourself, or indeed any chronic illness, I can highly recommend the website But You Don’t Look Sick for both fun and serious help.

The Sunday Salon: Lupus sucks

The Sunday Salon

So last weekend‘s feeling a bit bleh turned into a lupus flare and I have lost half my week to the black hole of SLE. Which sucks.

I’m afraid I’m going to vent a little bit about being ill now. It is not my most interesting topic. In many ways I should be grateful that my major lupus symptoms – fatigue and brain fog, with added dizziness and double vision if I push myself – are not painful. Even my lupus symptoms that do hurt – headaches and joint pains – are quite low-level pain. My specialist called them “irritants” once, which is probably accurate but also a little demeaning. Because pain or not, lupus can (and does) still incapacitate me. When it flares I can’t think, I can’t make the most basic decisions like what to eat, in fact I get panicky if faced by a choice. I can’t hold a conversation. I certainly can’t read a book. Standing up long enough to shower completely drains me.

It passes. I am lucky that I only get really bad for a few days at a time now, thanks to medication and fatigue-management techniques. I am lucky that Tim knows me well enough to spot the danger signs and make me rest (if I can be persuaded). But it never goes away. I am always tired. I am always one push-too-hard away from being “lupus tired”.

Rant over.

Seek the truth

While I have not read much this week, I do have a small backlog of book reviews so I was still able to post about Balthazar and Mountolive. Yesterday Tim took me to the cinema to see Cabin in the Woods (which I knew nearly nothing about beforehand and that was totally the best way to see it so I will say nothing other than “it’s great”) and to Foyles bookshop, because the TBR is always hungry. Today I will be mostly sleeping.

How was your week?

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.

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

10 May is World Lupus Day

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!