Sunday, November 06, 2005

No good name for this illness

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.

5 comments:

Xavier said...

Shit, man that sounds like hell

Sheila said...

Hi Terrence,

I have had chronic iritis for 2-1/2 years. Long story. I’m involved with online support groups
(http://p083.ezboard.com/buveitissupportmeei and www.iritis.org), which helps a lot, but not many people have my particular problem (idiopathic, iris fused to lens), and I have begun searching the internet for blogs by people who have had this and how they are coping, how they got it into remission, if they did.

I see you suffer from iritis due to Reiter's Syndrome. Perhaps some disease will be discovered for me, but none as yet. Your blogs on the subject ended over a year ago,
and I was wondering if you have been iritis free. It’s a long shot, but thought I’d throw it out there. This disease is very uncomfortable and frightening (already have cataract and constantly watching for glaucoma,
especially as fused iris can cause it) and perhaps you can relate to my COMPLETE ANXIETY. I am looking for stories of hope and how people cope with this. Perhaps you were one of the lucky ones, and it was just a brief episode.

Regards,
Sheila

Terence said...

Hi Sheila,

Really sorry to hear about your arthritis. I've been lucky in so much as that I was only afflicted with Iritis for a few weeks during my first major bout of Reactive Arthritis. As the arthritis got better so did the Iritis. Since then my arthritis has returned but my eyes have been more or less trouble free.

But, having a disease that has the potential to completely disable me at some stage, I can empathise with what you're going through. It sucks and sometimes, I think, the uncertainty is almost becomes worse than the symptoms.

You may be interested in this longer post I wrote about living with disease and trying to find cures. Even though it doesn't relate to Iritis, some of the twists and turns might be relevant to you too.

One final thing: I tried to do what you are doing too - searching for blogs written by people with my condition. I really felt like I might learn from them. I didn't have much luck - but then again, I'm a really lazy searcher. Good luck and feel free to ask any questions you want.

Terence

wintemp said...

I too have recurring iritis and have gone through all the regimens posted on various med sites (blood & urine tests, xrays chest & back, and steroid injections in the eye). As you're aware, they only treat the symptom, they do not cure. By accident I found a cure for myself where outbreaks end after a day or two instead of 6-8 wks with relief of pain in 2-4 hours.
Try the antihistamine Hydroxyz HCL 25mg. It is a presription drug. When an outbreak occurs take a pill. If after 2 hours pain is still present or increasing, take another pill. Once pain is under control, take pill about every 4 hours based on pain level. Pain is usually gone in 2-8 hours. Outbreak gone after a day or two. I only take a pill if the pain is obviously returning/intensifying. Once the eye is on the mend, I stop taking the pills. So far I've only had to take 2-10 pills during an outbreak depending on intensity of pain.
Side affects of the pill is drowsiness. You can still function, but you're definitely in a haze. I shake the effects after 12-24 hrs.
Hope this helps.

Terence said...

Hi Wintemp,

Thanks for your advice - I'd definitely consider it if I ever get irtitis again.

One word of caution to anyone reading this (yourself included) is that Iritis is a potentially very serious affliction - it can leave you blind. So your first point of call should be a doctor or specialist who knows what they are doing (and see them quickly).

cheers

Terence