Geography, American-style

On the train to work this week, there were three kindly-looking, middle-aged American men standing around blocking the carriage with their luggage, talking about the difference between longitude (east-west) and latitude (north-south).

As I was politely elbowing my way past them, this is what I heard:

"No, no, no. That's latitude. You know how I remember it? Ladder.
Ladder for LADIDYUDE."

Not only did I nearly wet myself with excitement at this little mnemonic that only works if you can do your most nasal American accent ever, I am now sorted for any future pub quizzes with a geography round. Thank you, tourism!

Losing a superpower

Giving blood is a nice way to indirectly (or directly) save somebody's life, especially for those of us not blessed with Superman's body, Wonder Woman's lasso or any dodgy nuclear facilities in the vicinity.

It turns out that the Medical Advisory Board says anyone on anti-TNF cannot give blood. The reasons are, I'm sure, valid. A fellow NASS member pointed out to me that anti-TNF suppresses an immune condition and so blood donation may cause a flare up, while immunosuppression can mask the body's normal response to some infectious and inflammatory conditions, so diseases that may be transmitted by donation could be missed by the Blood Services. I also know that the medication can affect specific white blood cell production, which might not be great for the donator or the receiver of the blood. 

I know all that, but I can't pretend that I'm not a little (okay, a lot) disappointed. Guess I'll have to go back to antagonising spiders again in the hope that a radioactive one happens to bite me and give me awesome musculature and a cool unitard. 

Everyone else: please do something amazing on my behalf!
http://www.blood.co.uk/

Bad Spanish Grammar

I spotted this on Pinterest the other day, while I was channelling my inner all-crafting, all-baking American housewife, and did a double take. I hate to be a partypooper*, but fashionistas, take note: "let's fiesta" is not a grammatically acceptable sentence in Spanish.Why not? Because fiestar is a non-existent verb. In English we can say: "I'm going to the party, because I like to party" where party is a noun in the first instance, and a verb in the second. In Spanish, la fiesta is a noun, and only a noun (so you have to say: let's *throw* a fiesta or *crash* a fiesta).

Of course, if we are speaking Spanglish, this might be alright, but I suspect not: even if you think a sentence like "sometimes I'll start a sentence in Spanish, and termino en español" is the work of the devil, it still obeys the rules of both languages.

Interestingly you can also say party in Spanish, but woe betide you if you try to make it into a verb. Partear, while it sounds hella fun, actually means to help deliver (a baby).





*Not strictly true. It was once suggested to me that I should call my fictional rock band Captain Buzzkill.

These little words, what power...

I have a friend who thinks poetry is a complete waste of time. He even listens to music without lyrics as far as possible, because if it doesn't have some kind of message or "point" then he's not going to bother with it. As a complete word-phile, I disagree. I don't think it needs to have an explicit point for it to be useful or comforting or thought-provoking or beautiful. In fact, I am probably one of the very few people who is glad that we studied poetry for our English GCSEs. Without that anthology I probably would never have found Simon Armitage and bought his Book of Matches, and then I would never have found this on page 21.

æŋkɪˈlɘʊzɪŋ spɒndɪˈlaɪtɪs:
ankylosing meaning bond or join
and spondylitis meaning of the bone or spine.
That half explains the cracks and clicks,
the clockwork of my joints and discs,
the ratchet of my hips. I'm fossilizing -
every time I rest
I let the gristle knit, weave, mesh.

My dear, my skeleton will set like biscuit overnight,
like glass, like ice, and you can choose
to snap me back to life before first light,
or let me laze until
the shape I take becomes the shape I keep.

Don't leave me be. Don't let me sleep.       

©Simon Armitage 1993

It's not a poem with an obvious point, I guess, and I can see that it might look a little like self-pitying wallowing. It doesn't talk about the futility of capitalism or gender roles or voter apathy. But it is special to me. It reflects real worries and emotions, it tells you you're not alone when your imagination goes to town with Google image search, it speaks of the frightening uncertainty of the future. For me, the best bit, besides imagining what kind of biscuit I'd like my skeleton to be (mmmm, gingerbread, please) is the last line.

Don't leave me be. Don't let me sleep.

A desperate plea to his partner, I think, but also a reminder that for some people AS never goes away, and wakes you up in the dead of the night to leave you without sleep and in agony. (Ha! I knew there was a reason they gave me an A* for talking cowpat English Lit). The bottom line? Poetry is cool, man.



Simon Armitage says his AS is now in remission. Our GCSE class went to a Poetry Live! roadshow before we took our exams, where he explained that the visible signs of bone fusion had halted and he was no longer in pain*.

*Incidentally, taking a bunch of 16 year-olds to a poetry reading and letting them ask questions afterwards is a recipe for disaster. An example of an actual question to Carol Ann Duffy, a professor of poetry, 2009 Poet Laureate, acclaimed playwright etc etc, asked by my classmate: "Why is your voice so boring?"

Sharp scratch coming up...

Snow is falling (at least in some parts of the UK, if not actually in this little bit of it), the air is cold and DFS have started showing some really creepy furniture adverts featuring elves (for want of a better word). It can mean only one thing: it's winter flu season!

Despite not receiving any reminders, I managed to slot an appointment with the nurse into my hectic social calendar (ha) to get my free flu jab. Leaving the surgery feeling virtuous, although a little peaky, imagine my surprise to find this article on the BBC, bemoaning falling take-up of vaccines amongst both the over-65s and the younger generation. It's not that surprising, given that I didn't know I was in one of the at-risk groups (immunosuppressed - thanks to the anti-TNF drugs I take) until a consultant mentioned it in passing. Nevertheless, it seems that some people were getting quite worked up over the existence of a vaccine at all:

Why the desperation to vaccinate everyone? What is government so keen to get shoved into our bloodstreams? In past decades, people caught flu and got over it, without all these vaccinations; they weren't available. We have become too reliant on vaccines for everything, filling our bodies with the stuff. Yes I've had flu, it aint fun but it soon goes. Remember the outcry about swine flu vacs?

Unable to reply in person, here is a short list in defence of beaten-up influenza injections.

1. Vaccines are developing all the time in response to viruses evolving. The latest advances in medical innovation and technology are astounding. Why shouldn't we be using them to the best possible purposes?
2. Which leads me on to: we might as well say that plenty of people survive measles/Bubonic Plague/Yellow Fever/Malaria etc, so why bother vaccinating everyone? If we let nature take its course when we have medication available to save people's lives, then why bother with other diseases? Why bother treating cancer for that matter? In the village where my Dad grew up, a man's broken leg received no medical attention and he survived (albeit with a wonky shin), so why should bother with X-rays and bone-setting? etc etc
3. Besides, flu can be deadly. Every year a small percentage of the population die from various strains of influenza, mostly people with underlying health conditions, just like those people who are entitled to the flu vaccine. Last year, the death toll was 112.
4. And, because many people who receive the vaccine have compromised immune systems, we can act as disease amplifiers - we are more likely to get ill, and manifest more serious symptoms. The viruses are more likely to use us as breeding grounds, so god help those people with whom we come into contact...
5. Er, swine flu vacs? Not actually relevant to this discussion as they don't actually protect against "normal" flu, but the policy of giving them to at-risk groups makes sense, see 3 and 4 above.
6. Finally, on a personal note, my immunosuppressed state would not have been possible in "past decades" because anti-TNF is a recent drug. In those past decades I would have caught flu and got over it, but now I'm not sure: I've had some pretty nasty gastrointestinal bugs since starting my medication and my friends certainly knew about it (especially as one of them had to take me on an emergency taxi ride to the hospital).

 So there you have it. Admittedly I'm biased, but I've tried to be as objective as possible (barring number 5). And I was glad to see that this morning's free paper had a 1/4 page spread reminder about the injections.

To be 'differently' abled or not to be, that is the question...

To be disabled today is complicated. We are living in a world where, on the one hand, disability is featured more prominently in our everyday lives, and possibly (although this is controversial) in a more positive light in the media (for an interesting article on this phenomenon, see http://www.bbc.co.uk/news/entertainment-arts-17842195 ). But at the same time, as a recent YouGov poll (January 2012) found, those who are entitled to benefits from the state (which includes many people with disabilities) are perceived as 'scroungers' and 'undeserving poor'.

So for people with so-called invisible disabilities (diabetes, cancer, chronic depression, Crohn's, ankylosing spondylitis and so on) a difficult choice has to be made. Do we put down on an Equal Opportunities Form that we have a disability, or do we keep schtum until it presents a problem once we are employed? Do we decide to apply for Disability Living Allowance (DLA) or do we just try and muddle on without it? Are we 'allowed' to consider 'being disabled' as part of our identity, or could someone see that as a gross exaggeration? It's certainly not as tricky as those people who have no choice, but  it is tricky nonetheless.

Equal Opportunities Forms are a nightmare. Despite the Disability Discrimination Act 2010, which was put in place to try and prevent employers from discriminating against a potential employee due to any physical or mental impairment that employee might have, there are still doubts - in my mind - at least, that an employer would pick me (with my inability to stand or sit in any position for longer than 20 minutes) over someone with the same qualifications and skills who could do anything for any amount of time. Legally I do not have to disclose anything to a potential employer about my physical or mental health, but many job adverts now put a disclaimer at the bottom with words to the effect that employees will need to complete a 'satisfactory' medical examination in order to be employed, whatever that means.

As for the DLA, in the past, I could really have done with the money - I was unable to resume employment in a position that paid me well, because I could not cope with the long shifts where I was unable to sit down or have breaks; I was in pain all the time because of school work, and had no energy to look for part-time work anyway. But if you look at those forms, you can tell they haven't really thought about chronic illnesses like AS, and how they manifest themselves:

You may get DLA if you are under 65 and have a physical or mental disability severe enough that you need help with your personal care or someone to supervise you,(see page 16 of the form) or
• you are unable to walk, or find walking very hard, or you need help to
get around, and
• you have had these care needs or walking difficulties (or both) for at
least three months, and they must be likely to continue for at least
another 6 months.
(DLA form online)

At the time when I wanted to apply for the DLA, I met all these conditions, BUT, I only met them for, say, 3 days a week. AS is capricious. It comes and goes, and sometimes you can predict when something will cause a flare, and sometimes you can't. I know now, that if I'd been successful in my application but had subsequently been assessed on a 'good day', I would never have received any money. Now, with my current medication, I probably wouldn't qualify anyway, but then, now, I am in a position where I feel I don't need the money anyway, as I have an OK chance of finding a job (well sort of, given the double dip, shortage of graduate jobs, the bleak prospects for the economy and all that). Yet I still find myself getting angry that others have been denied the money, especially as I know AS sufferers who deserve (and need) the money, but who are too proud to apply, or who give up thanks to the application process. But what rankles the most are the misunderstandings that lead to the assumption that you are faking it, or a benefit cheat. Fairly recently, people with AS have been raked over the coals for supposedly scamming the state, because they appeared on a prime-time TV show, actually *dancing* (ooh, the cheek of it! How dare they enjoy a pain-free day!).

Necking

Having suffered with neck pain a lot when I was younger, I used to visit a chiropractor (something which draws gasps from many rheumatology consultants and physios), who would click and twist my neck until the pain had disappeared completely and my neck felt heavenly. I stopped going to see her after she stopped doing this, and moved on to a completely ineffectual instrument that resembled a pneumatic drill which she tapped gingerly against my vertebrae. So it was interesting to find this in the news today. Apparently despite my cervical bliss (ooh matron, etc etc) the clicking and neck manipulation could have been storing up future problems.

Or it might not have been. This one seems like it will run and run, but I probably won't be going back to a chiropractor anytime soon. It's only looking back that the idea that holding certain foods in your mouth can affect your arm strength seems bizarre... not to mention her advocation that I give up rice krispies for breakfast and replace them with avocados. I'll save my money and buy my own swimming pool instead, I think, where I can do hydrotherapy exercises without gossiping women and yoga-practising OAPs hogging all the space.

Some kind of despair

Ever since starting Humira, I've had a new lease of life, and I've wanted to push my body and just see what it can do, now that it's 'normal'. But I forget, sometimes, that it's not normal, and I'll do something it doesn't like and suddenly every ache and pain I get starts me panicking that the medication is wearing off and I'm going to go back to crawling around in agony.

I've noticed pains in my knees for a couple of months now, and the consultant doesn't seem to think much of them. But recently, they've been getting really bad, so that today when I went on a one hour walk to clear my head, half an hour in, my knees were killing me. To be honest, I'm terrified. I can feel them aching and protesting, and I don't know what to do.

Of course, it could be worse. But it could always be worse. There's always someone worse off than you. But somehow, that isn't very comforting -  nor is it very helpful. It doesn't stop making you scared, and it doesn't stop you feeling guilty for feeling pain. Trouble is, I'm not sure what could make things better. Probably sleep, I guess. And as my Granny used to say, we'll see how it is in the morning. Good night, Internet.