It made the girls themselves gleam

The Radium GirlsThe Radium Girls
by Kate Moore

I first heard about this book via work. It’s part of a current trend – one that I fully support – of identifying stories from history that are important but little known and giving them a boost. In this case, it’s the story of thousands of women who worked in the (mostly) early 20th century painting dials onto watch faces with radium-based paint, so that they glowed in the dark.

It sounds like a terrible idea and it was. But even though shortly after Marie and Pierre Curie discovered radium in 1898 they and their colleagues realised it could cause harm to humans, it became famous for its ability to destroy or reduce cancerous tumours, and was therefore widely considered to be health-giving. So when Dr Sabin von Sochocky, founder of the United States Radium Corporation (USRC), which mined and processed radium in New Jersey, figured out that it could be used to create a glow-in-the-dark paint, this seemed like a brilliant new commercial avenue for the company.

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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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He would name, classify and diagnose every nuance of the human soul

the_memory_of_love_by_aminatta_fornaThe Memory of Love
by Aminatta Forna

I can’t remember how this book made its way onto my TBR, but I picked it up thanks to the Books on the Nightstand Book Bingo, which for me includes the square “Set in Africa”. If not for that I might have avoided this for a long time, expecting a dark, disturbing read. It’s not quite what I expected.

The book has dark, disturbing moments for sure. It is set in Freetown, Sierra Leone’s capital, post civil war, pre Ebola, so approximately when it was written (this book was published in 2010 so presumably written in about 2008). The civil war is a scar for the native characters, creating a distance that can never be breached by the primary non-native character, a white British doctor.

Adrian Lockheart is a psychologist on secondment to Sierra Leone. It is his second assignment to Africa, and he spends much of the novel dwelling on his reasons for being there. He has a wife and daughter back home in England, but his marriage is failing and over the years he has lost the feeling that he is actually helping his patients.

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

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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From veggie to…pesce?

I made a decision a few months ago that for me was a really big deal, though it has little to no impact on anyone else. It will make me less of a pain at mealtimes, but there’s limited people who got to see me being a pain anyway, I hope! What am I talking about? After almost 19 years of being a strict vegetarian I have started eating fish.

Fish 'n' Chips

As I say, this was a big decision and not one I took lightly. I became – and stayed – vegetarian for a raft of reasons, many but not all of which apply to both meat and fish. I’m not going to list all my reasons for the big switch here, but they include the fact that between IBS and lupus it’s really useful to have more options of where and what I can eat. And I also like the idea of being able to travel more widely without stressing about what I’ll be able to eat there (it really helped in Sicily; the diet there seems to be at least 50% fish and seafood).

For the record, the idea of my eating meat still makes me feel a bit sick (I have no problem with others eating meat, that’s just my personal reaction) but somehow fish has always been a completely separate thing in my head. And I don’t feel that I was lacking any nutrients on a fully vegetarian diet. My various health problems mean I’ve been pretty closely monitored by the docs over the last 10 years and not once has it been suggested that something was wrong with my diet.

What I really wanted to write about here is the process of adding fish to my diet, because almost everyone I’ve spoken to about it has been really interested. Or maybe they were all being polite. Anyway, once the decision was made, Tim and I made a careful plan. There were a few things to consider. The primary worry was that fish would turn out to be an irritant to my IBS, because that would be a complete fail. Slightly less worrying was the possibility that I wouldn’t be able to properly digest fish after so many years. I say less worrying, because the human body is pretty impressive and quickly adapts to changes in diet, so that would only have been a temporary problem. And the third worry? That I just plain wouldn’t like it. The thing is, as a child I really disliked fish, but then I also disliked tea, coffee and other things I’ve come to love.

We started with a small quantity of smoked salmon in some pasta. It was probably the first smoked salmon I ever ate and man was it tasty. And such a strong flavour; I hadn’t expected that, somehow. I really didn’t want to wait a whole week for the next culinary experiment but, y’know, we were being sensible and all. Next up, Tim poached some haddock. Another success, this time with the mild kind of taste I’d been expecting. Week after week, I discovered new textures and flavours, all of which I loved. I even, when Tim had to go away for work, cooked myself a tuna steak (loved the taste but I was a bit put off by how much it looked like a slab of meat on my plate).

So far the only fails have been prawns (I was a bit bothered that they still look like the animal, if that makes sense, and I threw them up, which may have been psychological or may have been a genuine reaction; I’m avoiding them for now) and small fry (a bit of an ordering fail while in Italy, to be honest, but good to know that it is possible for me to dislike a fish dish!).

I am finding this whole thing genuinely exciting, there is so much new stuff for me to discover! And it even makes me a little sad to think that in a year’s time or maybe even less, fish will just be one more ordinary ingredient in my regular diet, rather than a new discovery. For now, though, it’s all about the fun. (Tonight we made monkfish tacos with homemade guacamole – super tasty!)

I do feel a twinge of guilt now and then, because for so long being a vegetarian was part of who I am. It’s very strange defining myself as pescetarian. But so much fun queuing up all the possible permutations of fish dishes! Fish lovers out there: what dish do you recommend?

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?

Life wraps metaphors up in little bows

Brain on Fire: My Month of Madness
by Susannah Cahalan

At the start of this year I made a vague promise to myself not to buy any new books or request any advance copies from publishers, and within two weeks I had failed on both counts. The first was a hopeless case anyway, but I really thought I’d manage the second. Until, that is, I read about this book in the Penguin Press Newsletter and absolutely had to read it.

Susannah Cahalan is a reporter for the New York Post, one of those annoyingly talented people who got her break as a journalist before she even left high school, but when she was 24 she suddenly descended into mental health hell. Her symptoms escalate quickly from lack of concentration and paranoia to mania and seizures, to the point where she has to be hospitalised, a time that she cannot actually remember so she has had to piece it together from doctors’ notes, interviews with family and friends, hospital video and her intermittent journal entries.

Cahalan’s journalism training serves her well. She tells her story with a fluid, gripping style, while doing a good job of explaining the medical facts. She comes across as intelligent and likeable, as well as remaining confused by her illness and how it has changed her life. To an extent, you can tell that she is a tabloid journalist, as she is both easy to read and prone to a few too many soap-opera/cliffhanger-style statements, but she doesn’t shy from the more complicated side of trying to understand her illness.

“Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.”

It is a frightening story. Cahalan has no history of mental illness and yet is diagnosed in quick succession with bipolar disorder, alcoholic withdrawal, schizoaffective disorder and then psychosis but all attempts to find a medical explanation for her catatonic state initially fail. Her family is desperate to keep her out of the psychiatric ward and it is their tenacity, plus a little luck/good timing that finally gets the ball rolling toward diagnosis, treatment and recovery.

“It had cost $1 million to treat me, a number that boggles the mind. Luckily, at the time I was a full-time employee at the Post, and my insurance covered most of the exorbitant price tag…Unfortunately, there’s often not the same safety net in place for those with lifelong psychiatric conditions.”

I hesitate to compare my health problems with Cahalan’s, obviously our situations are totally different, but there were definitely moments I could empathise with. “I began keeping to-do lists…including insignificant things like ‘walk to town’ or ‘read the papers’ so I could experience the satisfaction of crossing them off.” I do that all the time. I hate to not do something useful every day, but fatigue and brain fog can make that tough. And Cahalan’s final diagnosis is an autoimmune disease, as mine is, so we have both had to figure out how to react to the idea that our own bodies are attacking us. Plus of course an autoimmune disease never really goes away. While Cahalan is currently in complete remission, she will always be waiting for the next flare up, always wondering if a sudden fit of jealousy or deja vu is genuine or a symptom.

It’s a very insightful, moving book. I was a little frustrated by the repetition of the question of whether she was the same person as before. I get that she felt she lost herself for a few months, that people who saw her during that time barely recognised her, and therefore getting her sense of self back was hugely important. But of course it will have changed her. Even if she is 100% medically recovered she has been through a huge experience. She was young, outgoing and driven and then she had breakdowns at work, lost interest in the world, accused her nearest and dearest of horrible things – of course that would change a person, at the very least as a huge knock to the confidence.

But minor quibbles aside this is a well written, brutally honest account of a life that falls apart and has to be painstakingly rebuilt. Plus it’s an important reminder that a person experiencing a manic or psychotic episode isn’t just crazy or even possessed, they’re a human being whose brain is sick, or as Cahalan’s doctor explains it, whose brain is on fire.

Published February 2013 by Penguin Books.

Source: This book was kindly sent to me by the publisher in return for an honest review.

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

Lupus fashion

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

I said I would

I come from an active family and I have a health condition that requires me to maintain my fitness so as not to fall to pieces, so it is with great regret that I admit that I am frankly pretty rubbish at doing exercise. I have good intentions but I don’t follow through with them.

Over the years I have tried many forms of exercise, from kick-boxing to trampolining to pilates to plain-old gym workouts. I quite like swimming but Bristol doesn’t have a central public pool and I’m rubbish at figuring out buses (I know it’s a poor excuse). Bizarrely the one thing I managed to keep up the longest (now lapsed) was the one I always maintained that I hated: running.

I don’t really consider running fun or pleasurable. It’s a free form of exercise that makes me feel like I’ve worked really hard because…well, I find it really hard.

My Mum said this to me back in 2009. She had talked me into entering a 5k race for charity (Lupus UK) and as she ran with me she alternately egged me on and chatted about anything and everything to take our minds off the painful physical effort. One thing she said that really resonated was that, because she runs a lot and has done for years, enters races, has run the London Marathon twice, people tend to assume that she finds running easy and fun. She does not. It has always been hard and she still finds it hard. That’s why she does it. You get a greater sense of achievement when you do something that you find really hard.

And I get that. When I get back from a run I really feel like I’ve pushed my body, done something that’s good for me. I’m proud of myself every time. That’s worth the pain and effort. On occasion. However, the occasions have got further and further apart so this year I signed up to a gym with a swimming pool and then bam! Along came a bold new idea: hulaerobics.

I’ve heard it said that when committing to a new exercise regime, one of the best motivators is to sign up to something with a friend or two. I can’t promise it works in the long run but it did get me to try out something I very much doubt I would have tried alone.

The ominous-sounding hulaerobics class is held at the Southville Centre. I don’t remember owning a hula hoop as a child so it wasn’t much of a surprise when, while waiting for the class to begin, my attempts to hula lasted approximately three seconds each.

Thankfully the class was aimed at beginners, which most of us were, and much of it was devoted to the simple task of learning to keep the hula hoop spinning (there was also some aerobics thrown in, if you hadn’t guessed that from the name). Apparently, by the end of the course we will be salsa dancing while hulaing. It feels a long way off but not impossible.

In one hour, as well as holding my abdomen tenser for longer than I have since I was a gymnast umpteen years ago, I learned to keep the hoop spinning (mostly) and do stuff with my arms at the same time. Result!

I had a lot of aches and pains afterward and I’m still tired today, so I’m not certain I’ll be going back next week, but I may yet be persuaded.