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!

Democracy rules

If you do nothing else today

I believe in democracy. I believe in using my vote. I believe in you using your vote, even if I don’t agree with your political views. I am very excited about tomorrow’s election and the possibilities that it holds. Whatever else you do tomorrow, if you are eligible to vote in the UK then use your vote.

Stephen Fry, of course, said all this more eloquently than I could. But I will try to explain briefly. Politics is important because it’s not just boring old men bickering about complicated stuff in London. Politics is everyday life, your life. It’s everything from how much tax you pay to how and when your rubbish gets collected, from the number of nurses staffing a hospital ward to how quickly potholes get fixed. Your biggest opportunity to have your say in all those things is to use your vote.

If you don’t yet know which way to vote there are some great websites to help you make up your mind – VoteMatch, VoteForPolicies, and of course the manifesto of each party is on their website. More specific to your local area, you can read about your MP candidates at TheyWorkForYou.

Time to make those far-off lands distant again

When the news first broke about the Icelandic volcano eruption causing a flight ban across much of northern Europe, I must admit that I was a little pleased about it. Great! I thought. People will turn to the alternatives (trains! boats! holidays close to home! eating locally produced food!) and discover that they’re not so bad. Of course, as the situation has continued and the news has been filled with little else, my naivety has been proven. It is of course miserable for most people affected and may continue to be miserable for some time to come.

The thing is, for the first 48 hours most of the news I heard or read was overwhelmingly positive: John Cleese takes comically expensive taxi ride across Europe, people use the internet to find other travellers to share alternative journeys home with, skies are clear and blue, hot-air balloon flies safely over Bristol Airport. The reality that’s now emerging is that it’s costing a lot of people a lot of money – the extra costs incurred to get home by other means and/or stay in a hotel for extra nights; missing work and therefore pay; African farmers not being able to sell their crops that are usually air-freighted to Europe; businesses reliant on tourism from the US and Canada watching their bank balances with horror – not to mention the non-monetary issues like major operations being postponed; missed birthdays, weddings, funerals, anniversaries; students and schoolchildren missing exams and coursework deadlines.

Obviously a crisis like this is not the way to show the world what life would be like without flying. The world relies so heavily on flight that a sudden ban would never work. Alternatives need to be improved and people need to start using them. Then we can start significantly reducing flights and discover that it’s better all round. Stuart Jeffries paints an attractive picture of this but like many people he concentrates heavily on how we can all change our holidaying habits. This isn’t just about holidays, it’s about business travel, air freight, artists on tour, student exchanges, sports tournaments. So much of modern life relies on air travel and that’s going to be difficult to change.

I do not think that everything about globalisation is bad. I honestly believe that it broadens the mind to travel as much as you can. I love working with and meeting people from all over the world. I love trying new and interesting foods. If a truly environmentally friendly plane fuel became readily available then I would be fine with flying. However, I do not believe in carrying on as we are, hoping for that magic pill. We, as a whole world, should be trying to fly less. Businesses need to start actually using those expensive teleconference systems that gather dust in meeting rooms, farmers need to be encouraged to grow crops that have a market in their own country (or that can be freighted by ship or train, I suppose)…and 101 other little changes that have been talked about for years but don’t seem to be happening. George Monbiot has covered this in a lot of detail.

The alternatives to flying need to get better, cheaper and more readily available. For example, crossing the Atlantic – there are currently 10 cruises per year from Southampton to New York (and back, obv.), 6 cruises per year from Southampton to Barbados, plus various cargo ships that carry 2–12 passengers. (This website looks like a pretty good source of info if you’re considering a transatlantic boat trip.) Not a lot of capacity for the millions of Brits who travel to the US each year, let alone those visiting other American countries or indeed any other nationalities wishing to cross the Atlantic (I can’t seem to find useful numbers on this – let me know in the comments if you have some). The cruises that do exist are luxury Cunard ones, with the fastest one taking 6–8 days each way and costing over £2000 per person. Cheaper, faster boats are going to be needed for the average Atlantic crosser to even be able to consider it as an alternative.

What should be easier – and arguably more useful – is improving rail infrastructure within each continent. You can currently get to almost anywhere in Europe and a lot of Asia by train. I don’t know about Africa, Australasia or South America but I hear that North America is pretty bad for rail travel (please do tell me in the comments about any experiences you have of rail abroad). The Man in Seat Sixty-One does a sterling job of explaining rail travel (and indeed all land and sea travel options) all over the world (though it does assume you’re starting from the UK). The problem is that it’s slow and expensive compared with flying and, while some train journeys are beautiful and comfortable enough to be a holiday in themselves, many are not.

For reliance on flying to be significantly reduced, we need to find alternatives that suit everyone, not just reasonably well off well intentioned holiday-makers. Everything needs to change, which is frightening and exhilarating. What an opportunity: to create a better world.

Drunken artists and geeks altogether now

I am a little hungover this morning because last night was the preview of Flicklgraphique, an exhibition of photographs from the Bristol Flickr group, in which both myself and the talkie one were lucky enough to have a photo on show. It was a great night and the exhibition looks brilliant. I urge everyone who can to go before it ends next Wednesday.

There was booze and nibbles,
Before the party started
balloons and beach balls,
Flickr colour coded
socialising and speech-making,

and, you know, some people looked at some photographs.

Did I mention there was booze?
Aftermath

Family matters

This week I have been preoccupied with family. My sister is visiting from the US for the first time in over three years so we are spending lots of time catching up, wondering whether to visit some sights or just carry on chatting. Talking is winning, partly thanks to the abysmal weather.

I have always been a person to rate my friends over my family but that’s not to say I don’t love my family. We’re not that similar as people but we obviously have shared history and I know from experience that my family will always be there for me, no matter what. I like to think my friends would as well but I haven’t tested them nearly as thoroughly!

There’s a great comfort in turning up at my childhood home and letting that huge catalogue of memories wash over me. It’s changed but is still the same. I know every picture on the walls and the history behind them, even as the furnishings gradually get replaced. I know each contour of the garden and where things are kept in the kitchen. At my Dad’s encouragement I help myself to food and drink at all times of day and night like I’m a teenager again. I scan through the bookshelves lovingly, picking out books from my childhood or degree course that ended up here.

It must be quite different for my sister who left home younger than I did and has been back far less frequently. She doesn’t know the story of the “best cutlery” in the box under the sofa and far fewer of her belongings are scattered around here, muddled up with everything else. I must talk to her about this tomorrow.

My sister and I are close in age and, perhaps for the first time, at essentially the same place in our lives, so we have a lot to talk about. It’s fun to chat as adults (although there’s still plenty of whinging about parents) and we relate better now than we ever have before. That said, seeing so little of one another puts us in that awkward position where we’re not familiar enough with each other’s daily life, friends, boss, etc to discuss them freely the way you can with friends you see all the time. And having such a short time together means you avoid any potentially touchy subjects. I know that my sister and I are capable of fighting – we shared a room for most of our childhood!

Still, it’s been great to have this time and I will be sad on Sunday when she’s gone. Will definitely have to add “Save up money and annual leave to visit Ruth next year” to the to do list.

High culture v low culture

This is a topic that fascinates me. It has been debated over and over whether “low culture” (by which I mean such things as gossip magazines, tabloid newspapers, celebrity biographies, trashy romance novels, generic Hollywood romcoms, generic Hollywood action films, reality TV, soaps, graffiti, all-girl pop bands, etc etc) is somehow a threat to “real” art and artists, or perhaps to society as a whole. Is it demeaning to people in general to pitch the majority of culture to the lowest common denominator? Or does popular culture exist because people…want it?

I have no problem with debate but I do get annoyed with the demand that you must take one of two extreme opposite sides and if you don’t you are indecisive, woolly and not worth listening to. I am perfectly capable of forming an opinion. Sometimes that opinion sits squarely, or close to, one side of a debate. But not always. Sometimes my opinion is genuinely inbetween two extremes or a combination of both sides. Sometimes I struggle to see why there has to be division in the first place. But that’s just me (I’m not naive, just peaceloving).

In this case I am a lover of some forms of both high and low culture. I mean, there’s examples of both that I consider to be vile, but we’ll steer clear of that for now. I have read both Ulysses and Harry Potter and did not love either. I am a big fan of the theatre and films but I am also a telly addict and have spent many happy hours watching Scrubs, How I Met Your Mother, Black Books and a host of other shows. Not reality TV though. None of that.

If I had one wish I'd ask for infinite wishes

A barman at our local asked the other day what I would wish for if I had one wish. I think my answer – “I would wish to never be ill” – threw him a little but it was the first thing my brain came up with. It’s a pretty selfish wish, when I could have plumped for world peace, or an end to all suffering, or for the proposed solutions to global warming to all immediately be put in place and to work…lots of things really.

The thing is, I’m ill a lot of the time. It sucks. I have a handful of chronic diseases that together conspire to have me overtired, in pain or otherwise non-functional for far too much of the time. I mean – just think what I could achieve if I didn’t have to rest for half the day and sleep for 10 hours a night; if I had bounding energy and enthusiasm. I could be an unstoppable force for good!

Which is not only selfish but megalomaniacal. Because who’s to say that I’ve got it right? That my ideas will make the world any better? We all think that if we ruled the world we could sort all the shit out but it’s not that simple, obviously. We all think differently. My perfect world is another man’s nightmare. Which is the basis for many brilliant books.

Do all politicians start out thinking that they’re going to make the world a better place? It must be so disappointing when it turns out to be all compromise and stalemates. Which of course was the take-home lesson of West Wing.

Anyway, assuming that you’re not allowed to ask for more wishes, which would clearly be cheating, what would you wish for?

On being a book lover

I love to read. I mean, I really love to read. I was that child whose parents had to wrestle the book from my hands at the dinner table to get me to eat, who had to seriously weigh up severe car travel sickness against the awful idea of a (sick-free) journey without reading, who read almost every book at the local library so was greatly relieved when they largely restocked in my early teens, who in a recent house move packaged up my most beloved books more carefully than the crystal wine glasses. In my defence I know that Debenhams still sells those glasses.

The point is that I write about books because I love them. I love the look, feel and smell of them, old and new. I love the shape of words on a page. I love the language of books: folio, typography, endpapers, head and tail bands.

But mostly I love to read. As a grown-up I read a lot less than that book-obsessed child I once was, because reading has to fit around work and housekeeping and socialising and all the rest of it, but reading is still a great pleasure, a guaranteed escape to a good place (no matter what the book is about).

My favourite books is an ever-changing list, partly because there are so many great books out there. But my favourite ever grown-up book is probably Sophie’s Choice by William Styron.

My favourite books as a child were much more clearcut. They were:

  • The Ghosts of Motley Hall by Richard Carpenter
  • Alpaca by Rosemary Billam
  • Carbonel by Barbara Sleigh
  • The Wickedest Witch in the World by Beverley Nichols
  • The Jolly Postman by Janet and Allen Ahlberg

Plus I also devoured everything by Roald Dahl, Colin Dann, Brian Jacques, Noel Streatfield and Frances Hodgson Burnett over and over again. Which is probably a more sophisticated list than the five I’ve picked out above, but taste is taste and they were my absolute favourites.

It’s personal, it’s about you the reader as much as anything else, it can be hard to put a finger on. I rate enjoyment of a book separately from quality of writing or storyline or characters because sometimes an author does everything well but I still don’t enjoy the book. And vice versa.

So, without further ado, my first Nose in a book review is here.