Tag: SLE

October is #LupusAwarenessMonth

Lupus UK 2019 posterRoughly once a year I write a post about having lupus (SLE), partly to raise awareness of the disease, but also because it helps me to talk about it in a space where I’m not worried about boring the same poor people who hear about it all the time! Here in the UK, October is Lupus Awareness Month so this seems like a good time.

The symptoms of lupus that I struggle with most are fatigue and brain fog. I had a really dispiriting experience with my rheumatologist earlier this year when I asked him if there is anything I can do medically to help with this and he responded “Everyone gets tired.” That’s so incredibly unhelpful and frankly offensive, though I didn’t have the words to explain that to him at the time.

For one thing, chronic fatigue is not just “feeling tired”, it is extreme and long-term and has a lot of side-effects that can make daily life really hard. Think about the most tired you have ever been. You may have experienced headache, sore eyes, double vision, dizziness, nausea or confusion. You might find yourself unable to think clearly or concentrate. You might find lights too bright, or noises hard to distinguish. Now imagine some or all of that happening every day, no matter how much sleep you get or how careful you are to eat healthily and do regular exercise.

A medical professional should know that’s what chronic fatigue means. So did he not believe me, or was he just being glib without realising how rude and dismissive it sounded? I’m annoyed at myself for not speaking up but then one of the things that I find especially hard is conversation with strangers. I often can’t manage to say what I want to because either I can’t find the right words, or I’m too tired to judge the right moment to jump in and speak.

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On music and photography

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Untitled

The lupus flare continues. Reading is a struggle. Even harder is conversation. It’s taken me a week to write this post. Being coherent is tough.

When I’m in a flare the things I enjoy doing are heavily restricted. I can watch TV and films if they’re plot-heavy and/or on the silly side, but I can’t concentrate enough for slow, serious or complicated (Brooklyn Nine Nine for the win!). I find social media overwhelming and really only check into Twitter regularly for the cute animal photos and videos. I can listen to podcasts for short periods but I lose concentration easily.

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Run, stop, lupus

Adam, Mum and me

Once again this year, my Mum talked me into running the Bristol 10k, so I have been training since mid-January. It did not go smoothly. There was snow and ice, injury, busy periods at work tiring me out and then before I knew it my old enemy reared its head: summer.

There is a good reason that May is Lupus Awareness Month in the USA. These long hours of daylight and higher UV levels can come as a surprise, especially on cloudy or wet days. I always have a lupus flare-up in May. Which made me wary of the Bristol 10k’s date of 13 May.

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Sunday Salon: A time to fight, a time to chill

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The Sunday SalonConsidering 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.

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World Lupus Day 2015

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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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Empower: Fight Like a Girl

Empower
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!

You can buy Empower: Fight Like a Girl now for £3/$5 here (UK) or here (US). Enjoy!

October is Lupus Awareness Month

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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.

Sunday Salon: Here comes the sun

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The Sunday Salon

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.

10 May is World Lupus Day

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?

The Sunday Salon: Lupus sucks

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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?