Wandering Thoughts

November 28, 2005

Another day in aching bones…

Filed under: Reactive Arthritis — terence @ 12:57 pm
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File under the joys of living with Reactive Arthritis. It’s 6pm and I am absolutely exhausted. Partially this is the result of a poor night’s sleep (caused in part by being in pain), and mostly it is the result of the big day I had.

Well, actually it wasn’t that big at all, but it demonstrates how small things shrink to big asks when you are arthritic.

10:20am – Trying to find a park in the city, I get lucky – fortunately – and find a park only half a block away from my destination.
10:30am – Meet up with the friend of a friend in a café. He used to be afflicted with a similar ailment to my own, but – after 5 or so years – managed to kick it. It’s great talking to him as (a) he gives me hope and (b) he gives me some good treatment ideas.
11:45am – Move my car to another car park so as not to exceed the 2 hour max time limit (my car already has a big blue chalk mark on the tire to remind me of this). Once again I am lucky – I get a car park close(ish) to where I need to go.
11:50am – Blood sugar levels low – I walk a few blocks to find somewhere which sells some food I can eat (chips).
12:10pm – I walk a couple of blocks to my next meeting for the day (which was close to the first). The meeting – which is about a server transfer affecting a website I manage (voluntarily) for a sports club – has been moved down the road. Which leads to another couple of blocks walk (power hobbling this time as I am late).
1:30pm – Walk back to car – drive up to university.
2:00pm – Lucky again, a car park close to the university means only a few hundred metres walk to hand in my timesheets for the last few weeks. Then back again to the car and then home. Where I have spent the afternoon working a little bit on a paper and distracting myself on Harry’s Place.
6:00pm – Exhausted total distance walked in the day: probably less than a kilometre. But it feels like 10kms.

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November 6, 2005

No good name for this illness

Filed under: Reactive Arthritis — terence @ 12:58 pm
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There is a long and funny (and slightly delicate) story to be told some day about my experiences in London in May of 1999. And one of these days I’ll write it out in full. For the time being, however, I’ll spare you the details and myself the blushing, and only provide the briefest of recaps. I had just spent the (northern hemisphere) winter meandering around the Cape Verde Islands and, amongst marvelling at the beauty of those odd, lost, Saharan-sand covered ghosts of volcanoes, I managed to contract Salmonella. At the time, it really wasn’t too much of a problem though – it anchored me to a toilet for a couple of days and left me feeling shaky for a while, but was mild enough that I didn’t even bother to go to a doctor in the Cape Verdes. I wasn’t highly feverish nor was I throwing up and, as I was due to fly back to Portugal a couple of days later, it seemed sensible to wait until I could converse with a medical professional who spoke English.

So I never bothered the Cape Verde Islands’s medical system with my problems and on the appropriate date took my flight to Lisbon. When I arrived in Portugal – being the cautious type – I did stop in to see a doctor though. A doctor who, ironically enough, spoke hardly any English, which led to me having to wrap my broken Portuguese around words such as [special Portuguese speaker’s bonus] casa de banho, mucu and sangue. Which was followed by the doctor – slowly and patiently – confirming my suspicions that there was nothing more than mild dysentery to worry about. He wrote me a script for antibiotics but, because the last of my symptoms cleared up by the following morning, I never collected the meds. Instead I went surfing and flew back to London a few days later.

End of story.

Erm no – actually, more like beginning of story: a few weeks later – crashing at a friend’s house in Fulham – the damnest things started happening to the strangest parts of my body and – hey presto – I was back at the doctors before you could say “my god! how on earth did that get there”. What then followed was humorous – or, at least, has elicited laughter from those people I have told the full story to – and involved two misdiagnoses, a whole heap of waiting around Charing Cross Hospital, a professional medical photographer taking photos of my symptoms, and much anxiety before a kindly Scottish doctor said to me “Terence, you haven’t got herpes you’ve got Reiters Syndrome.” Like I said, there is a whole bundle of detail missing from this summary of events, but it’s getting close to dinnertime and I want to finish this post, so the said detail will have to wait for another date.

For now, I’ll just note that Dr Winchester’s informing me that the aforementioned diagnosis was actually a misdiagnosis had me falling to my knees and punching the air. Or at least it would have, had my knees not been swollen to the size of softballs at that moment. And had the expression on his face not suggested to me that – whatever Reiter’s syndrome was – it was probably worse than herpes.

What followed was about 9 months of extreme discomfort – swollen joints, exhaustion, and an occurrence of what was probably Iritis. Iritis, can leave you blind, although I was lucky and experienced no damage to my eyesight. I did, however, experience acute pain from it – Iritis is definitely the second most agonising experience of my life to date. Indeed, it would be the most agonising were it not for the fact, that a couple of weeks before the Iritis, I had the joy of experiencing having my knee drained of fluid by a nasty fat syringe while insufficiently anaesthetised. There were also a few other symptoms to my illness that I will gloss over for now. But, basically, what I’ve told you is a reasonable enough description of life with a type of auto-immune arthritis..

Luckily for me, about 9 months after the initial attack of the illness I went into remission, which afforded me almost two whole years of symptom-free life (read globetrotting and surfing). Less luckily, in late 2002 the illness returned and since then I haven’t been able to shake it. It’s been better and worse but never have I been symptom free. For what it’s worth, at present, it is about as bad as it gets. Mercifully, I haven’t got any problems with my eyes though, but my spine is a long slivering snake of pain, my right knee is swollen, my feet hurt to walk on and my right arm is giving me gnawing on and off pain. At times I am reduced to crutches. More than this though, I am suffering from what feels like a mild fever (although my temperature is normal) and I am totally exhausted.

All of which brings me to the point of this ramble: there is no good name for this illness. My affliction used to be called Reiter’s Syndrome; a name which seemed to fit the bill, with the word syndrome appropriately, implying – in my mind at least – a variety of symptoms. What is more, as a wannabe writer, I quite liked the phonetics of the name.

The trouble is – as I found out last year – Hans Reiter, the doctor who first described the illness and who got to lend his name to it was a eugenicist and – arrgghhhh – a supporter of the Nazis. Moreover, according to the New Scientist, Reiter, during the Second World war:

designed typhoid inoculation experiments that killed more than 250 people at the Buchenwald concentration camp.

Now one thing I promised myself, when I made the decision to blog about my illness, was I that I would really try to avoid drowning my posts in self pity. (After all, things could be a lot worse.) But that is just my fucking luck . To be afflicted by an illness that was named after a Nazi war criminal.

Thankfully, though there is an alternative name for my affliction: Reactive arthritis. A name which is being increasingly used in light of a campaign by some doctors to free this illness from its named-after-a-Nazi past (needless to say this is a campaign I completely approve of).

So reactive arthritis it is. Which is the name I use now when people ask me what is wrong with me (actually I usually say something like: “I am afflicted with reactive arthritis, left wing politics and an incurable urge to hug trees”).

The trouble with Reactive Arthritis though, is that it seems to imply that the symptoms of my illness are limited merely to joint pain. Which isn’t the half of it. The joint pain is bad, but the exhaustion and on and off fevered feeling makes things much, much worse. Likewise, joint pain alone is unlikely to kill me but damage to my heart (which can occur in reactive arthritis) might.

So I’m left with a dilemma – obviously I won’t be calling my illness Reiter’s – but Reactive Arthritis doesn’t seem right either. It just seems to imply something less than that which I’ve got. And this isn’t just semantics either as I have, from time to time, experienced the problem of some significant people (but not all) in my life not understanding just how difficult my uncooperative body makes things.

A strange dilemma right. One I never would have imagined having to deal with. But then again, I never ever really imagined having to live with disease either.

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