As I may have mentioned several times already, I will be running the Bristol 10k on 7 May, which is approaching fast. I’m running to raise money for Lupus UK, hence the pose above.
Considering the timing of this post, there are some definite political interpretations of today’s headline, and I am a political person. However, what I want to write about is a more personal health-related meaning of the words “A time to fight, a time to chill”.
Having lupus means it’s extra important for me to stay fit, because the less fit I am, the more often I fall into the fatigue vicious circle (too tired to exercise → less fit, therefore more tired) – and for me, when the fatigue hits, it’s serious business. So early this year I made the decision to really push myself to get fit. I started running at least twice a week, going a little further each week, no matter what the weather, no matter how little I wanted to go out sometimes.
And it was working well. My first run in the first week of February was about 2.5 k in 17 minutes. In mid-April I beat my previous PB of 5 k and started plotted out some 6 and 7 k routes to aim for. I was finding it hard to get past 5.5 k but I was so proud of myself for how far I’d come. I was feeling healthier, happier and had energy.
It’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.
Women of TV have united against lupus by writing a short story collection! All proceeds go to the Lupus Foundation of America.
This special collection of short stories comes from top women writers of some of the best shows on TV, including: Marvel’s Agents of S.H.I.E.L.D., Family Guy, Battlestar Galactica, Buffy the Vampire Slayer, Star Trek: Voyager, Eureka, Twisted, Malcolm in the Middle, Being Human, Chuck, Gilmore Girls, Castle and Game of Thrones.
In this anthology, you’ll discover supernatural thrillers, crime mysteries, horror, comedies, and more.
Authors contributing stories to this volume include: Amy Berg, Cherry Chevapravatdumrong, Akela Cooper, Liz Edwards, Jane Espenson, Shalisha Francis & Nadine Knight, Lisa Klink, Pang-Ni Landrum, Lauren LeFranc, Kam Miller, Jess Pineda, Jennifer Quintenz, Lisa Randolph, Kay Reindl, Kira Snyder and Jeane Wong.
These fabulous ladies contributed to the anthology in honour of the very awesome Maurissa Tancharoen Whedon, who is a singer/dancer/actress/writer/producer who also happens to have lupus (yes, I have written about her before).
As you’ll know, lupus is an issue close to my heart. SLE is an incurable chronic disease with diverse symptoms, from fatigue and joint pain to organ failure and recurrent miscarriage (with a whole lot more besides). It affects about 5 million people worldwide, of which 90% are female, so the female focus of this anthology makes a whole lot of sense. There are many many women around the world fighting hard against this disease and I am all for anything that gives them a boost.
The timing is because, in the US at least, May is Lupus Awareness Month. Lupus UK tends to designate October instead. But any of time of year is good to me for spreading lupus awareness!
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.
I’m back! I didn’t post last weekend because I was in London visiting friends. We did karaoke, watched films and chilled together, plus I bought too many books. And now I can ask you all which of the two Joss Whedon films currently out do you prefer? I vote Cabin in the Woods but they are both excellent, of course.
This week it was World Lupus Day, which I didn’t do anything special for, unusually. But I will take this opportunity to encourage you to learn more about lupus, a good start being Lupus UK or the Lupus Foundation of America.
This week also saw the rain finally stop and the sun come out, so I am going to stop waffling and enjoy my summery Sunday. Is it summery where you are today?
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”.
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?
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.
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.
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.)
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.