Wandering Thoughts

August 17, 2014


I turned up just after 2am. I found my self sitting on a bed. Sitting on our bed. Someone – Jo – was standing next to me. There was a woman at the end of the hall dressed in blue and white. I’d never seen her before but there wasn’t enough of me there yet for this to be unusual. For it to be anything.

Jo was speaking to me.

Do you know what’s happening?


My neck was aching. One of the joints in my back hurt too.

You’ve had a seizure.

I was with it enough now to think first – driving – and then: shit, we were going surfing this weekend.

There were two women at the end of the corridor now.

They’re from the ambulance. They’re going to take you to hospital. I’ll drive our car.

How long did the seizure last?

You were convulsing for about two minutes. That was 15 minutes ago. I need to get you dressed.

I’d wet myself.

I was walked out to the ambulance, and then lay there as they put a needle into my arm and hooked me up to something. One of the nurses had worked in Solomon Islands; Jo was talking to her about that. Then we were driving.

I don’t recall much of the drive. Being wheeled into hospital was odd and upside down, but from then I found my way to a normal quite quickly.

I lay in a bed in A & E. Jo sat with me. And I felt sore ­­– my joints must have crunched convulsing – and sort of sick. Although once I was allowed to eat I felt less ill.

And that was me discovering I had epilepsy. A month ago now.

Ever since open heart surgery I have had spells of something akin to confusion. Deja vu, and a rush of memories of things which never happened.

Several years ago in Canberra I went and saw a neurologist: a chubby puffed-up man who thought way too much of himself, who told me I was suffering nothing more than anxiety.

I’ve suffered anxiety, and these spells were nothing like it. But while they weren’t pleasant, I couldn’t see the point of doing anything else after the dead end of that medical ‘professional’.

And so I went on, hoping I wouldn’t have an episode while giving a seminar, and not enjoying the spells when they occurred, but usually they were gone within 15 minutes. And I could live with that.

Then finally I had the tonic clonic seizure. And here I am now, struggling with not being able to drive. And wondering whether I can safely surf. And worrying about side effects of sodium valproate, and whether it will interact with warfarin. But at the same time better for having a proper diagnosis.

Some lessons:

As philosopher Havi Carel wrote, when you are ill, how you are treated makes a big difference. I’m very lucky to have the support of my wife and family. It would be very hard to navigate all this on my own. Also, two weeks ago I had my first neurology appointment at one of Canberra’s public hospitals. The appointment lasted over an hour. The registrar was incredibly thorough, and the consultant was considered and decent. And they went out of their way to explain, and to answer our questions. Which helped a lot. According to the consultant, the seizures probably stem from something akin to a small stroke, which I must have had shortly after open heart surgery.

Some advice:

If you end up with a serious chronic illness, address the illness itself as best you can, but also prepare for, and manage, non-biological changes to your life. There’s a lot more to it than your physical symptoms. Your relationships may change. Your career may be harder to maintain. Your goals may have to shift. You can’t cure any of this as such, but being aware and managing it helps. And hopefully you, like me, will find plenty of space to be happy, even if it’s a struggle at times.

And don’t worry (although always get symptoms checked by a medical professional): seizures in the wake of open heart surgery appear to be rare, and heart problems as a consequence of Reactive Arthritis or Ankylosing Spondylitis are not common.

And then:

Sometime around dawn they discharged me from A & E, and Jo and I decided to take the weekend we already had planned. We watched Brazil beat Chile in the soccer, then drove to Braidwood where we had coffee and food, and then made our way down to the coast, where we lay and read on the beach, under the winter sun, watching the sparkling sea.


April 25, 2010

The Arthritis Diary (updated)

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:01 pm

Feb 1999 – Catch dysentery in the Cape Verde Islands. Unpleasant but, as these things go, mild enough. So mild that I wait until I’m back in Portugal to see a doctor.

March 1999 – See a doctor in Figeira da Faz but, seeing as my stomach now seems settle, don’t both taking the antibiotics he prescribes.

March/April 1999 – Now back in London and my body starts doing very strange things. The baseball size knees being the most quantitatively disturbing. See a number of doctors before diagnosed correctly with Reactive Arthritis (ReA), but then receive excellent care. Have a frightening run in with what I think is Iritis but what the ophthalmologists decide is cold sore virus in my eyes. Iritis can damage your sight and my symptoms were textbook. It’s also a common complication of  ReA. Over this time the most inflamed joints are my knees and parts of my spine.

April 1999 – December 1999 – Taking nothing more than Ibuprofen (and a short course of antibiotics to clear the initial dysenteric infection; along with a couple of knee drains and steroid injections early on in the piece which only provide short term assistance) I slowly but surely get better. I notice that the rate of improvement increases as I reduce the Ibuprofen dose.

December 1999 – early 2002 – Effectively in remission, with only the mildest of symptoms. Able to travel to Greenland, trek in Patagonia and surf my socks off.

Early 2002 – a quick, two or three day, and relatively mild flare-up. Gone as quick as it came.

Mid 2002 – start to get more arthritic during the busy final month or so of my work. I’m also partying quite a lot and dealing with insomnia. No new infections though. The return, as is often the case with ReA is spontaneous – maybe triggered by lifestyle/fatigue. Worst joints – lower spine and knees.

Mid 2002 – Away for a week’s surf trip up the NSW north coast arthritis abates quickly but then returns upon return to Sydney and back to work.

Mid 2002 – I quit my job and go backpacking round Australia. At first the arthritis seems to be improving but then a long tramp around Mungo National park brings it back with a bang. Rightly or wrongly, and increasing pain, I continue my planned travels around Australia. Worst Joints – lower spine and feet. Knees now more or less fine.

Late 2002 – return to New Zealand. See a Rheumatologist at Hutt Hospital who proscribes Methotrexate. Frightened by he potential side effects of the drug, deterred by the lack of consultation around this decision, and not keen to admit my condition might be chronic, I don’t take the methotrexate. Instead I seek out another Rheumatologist who prescribes minocyline.

Early 2003 – Shortly after starting the minocycline begin a steady improvement. And start surfing again.

Early 2003 – Probably surfing too much in fact. I notice after long surfs the arthritis gets worse for a few days. Keep surfing though until…

About June 2003 – Relapse in the space of about an hour one evening. Literally I sit down to watch TV and then struggle shortly afterwards to get back up again. The arthritis had never fully gone away but now it was severe enough to stop me from surfing again and make life generally pretty difficult. Worst joints: feet and lower back.

June 2003 – September 2003 Rheumatologist adds clarithromycine (sorry I’m spelling the med names wrong) into the mix. Once again start getting better. Am surfing again by November.

December 2003 – Another relapse, this time overnight. Sometime around now try adding Cipro into the antibiotic mix -doesn’t help. Worst joints: back and feet. Particularly my plant-fasha (sorry also spelt wrong) muscle in the base of my right(?) foot. Spend time on crutches.

October 2004 (I think) – Start Sulphasalazine. Well enough to surf within a couple of months although definitely not rid of symptoms. I have to surf wearing a shoe to ease the pain in the base of my feet.

June or July 2005 – Another relapse – this time maybe actually the result of ear infections caught surfing. The worst relapse to date. Back on crutches, taking prednisone and close to being immobilised.

July 2005 – March 2006 – Some improvement but it is very slow. Definitely not well enough to surf. Struggle to hold down a 3 day a week job.

March 2006 – visit doctor and naturopath in Melbourne. They tell me to cut all grains but rice from my diet and also to eliminate dairy too. Prescribe different antibiotics.

October 2006 – I surf again. I can still remember how happy it felt to stand on that first wave at Titahi Bay. The naturopath and doctor’s advice/prescriptions seem to have worked. Certainly from March to October got much more quickly better than I had been.

October/November 2006 – Notice that I am very easily puffed surfing (and doing other exercise). Figure that I am just unfit.

December 2006 – surfing a lot.

December 2006 – November 2007 – Arthritis very close to being in remission. Am well enough to surf and hike (my feet are absolutely rid of inflammation – which is amazing). This period of remission is longer and stronger than all those preceding it other than the 1999-2002 remission. The only evidence of continuing disease is that if I surf too much I’m sore and inflamed for several days afterwards.

November 2007 – the doctor in Melbourne notices a funny pulse on my neck, sticks a stethoscope on me and informs me I have aortic regurgitation. Arthritis still fine. I’m worried about this and, on return to Wellington, hop in the queue to see the cardiologist at the local hospital, but I’m not that worried. My symptoms seem so mild (just a bit of breathlessness).

February 2008 (I think) – see cardiologist who informs me I’ll need open heart surgery to replace my aortic valve and ascending aorta.

May 2008 – cardiologist tells me I need to stop surfing. And that I must go easy on my heart. Arthritis still fine.

August 2008 – have surgery. Make a pretty good recovery. Worst lingering side-effects being to do with my memory.

November 2008 – Bang. Overnight. From being just a little stiff one day to unable to dress myself. Arthritis is back and I’m broken. No new infection.. No obvious cause. Maybe frustrations and stress at work plus a delayed response to the shock of surgery? Worst joints back as always; right knee; left hip; right ankle. The worst my arthritis has ever been.

November 2008 – May(ish) 2009 thanks first to Ibuprofen, panadol and tramadol, and then prednisone I manage to keep working somehow. Not a fund period of time. I try a large infusion of methlyprednisolone (spelt wrong of course). Helps but only for a few days.

May 2009 – finally take the plunge with Methotrexate. Something I should have done months earlier. It helps almost straight away and, in the absence of significant side-effects Rheumatologist increases dose to 25mg/week.

August 2009 – I surf again but it’s not like previous returns to the water. I’m very, very fragile. And the improvement doesn’t continue.

August 2009 – December 2009 I’m just well enough to surf and that’s about as good as I get, with fluctuations as described in this blog.

December 2009 – doctor/naturopath team in Melbourne (who I’ve still been seeing but who haven’t been able to repeat the magic of 2007) advise me that I’m actually a lot better and can try reducing my methotrexate dose. This seems like very bad advice but, out of interest, and because 25 mg a week is starting to knock me around a bit I reduce my does to 20mg (with the consent of my Rheumatologist in Wellington). To my surprise I seem to get a little bit better.

Feb 2009 – Quit my job. Flat tack busy preparing for shift to Australia. Manage to longboard (surf) quite a bit. I’m still very fragile but doing better than on previous efforts. Maybe only because I’m riding easier boards though.

March 2010 – To Australia. Maybe a little better here. Have tried lowering Methotrexate to 15mg per week. So far I haven’t gotten any worse for it. Will see what happens over next month and a bit. If still no worse will try lowering again and if this doesn’t cause problems will return to people in Melbourne for another try. Suffering from vertigo a bit and still struggling with post-surgery memory issues. On the other hand: enjoying longboarding down the South Coast.

April 28, 2009

Life in the Slow Lane

I was living in London when I had my first attack of reactive arthritis. Every couple of days I’d take the underground from Bethnal Green where I was couch sitting to Charing Cross Hospital. Sometimes, when I felt up to it, I’d stop and sight-see on the way. I was more mobile then than now, but still painfully slow.

And so I spent a lot of time hobbling in and out of Tube Stations. I would alight from the train, shuffle out of the way, and start towards the exit. First amongst a throng, then a crowd, then a trickle. Then by myself, in the empty echoing tunnels. If the station was large enough, or the walk long enough, other trains would arrive, and the walkway around me would fill with sound and people again, before it emptied out. Occasionally, I’d have company; the brave or determined elderly. Sometimes there’d be a line of us, spread out along the handrails like mountain climbers on a rope.

The other day, I was having coffee with a friend who also has a chronic illness. We talked, as we often do, about the frustrations of being unwell. One frustration that I wouldn’t have predicted in the days before the arthritis is the frustrated grind of expectations, the things I want to do with my life, still set by the norms of the people around me and life before I was sick, against the realities of being unwell. Things could be much worse, and I’m lucky and have a lot to be thankful for. But it’s hard not to feel sorry for yourself sometimes when it seems like life’s bustling out of the station in front of you, and you’re left limping along behind.

Or, at least, that’s the glum view of it all. What I need to remember is that, despite the faltering steps, I still made it out of the Underground in the end, and got to see most, if not all, of the things the city had to offer…

February 4, 2009

Decisions, decisions…

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:38 pm
Tags: ,

It’s been almost three months since the relapse. And question of the moment is, “am I getting better?”

I have to be getting better. I can’t afford for the arthritis to last too long. I can’t risk more damage round my heart.

And so, if my current treatment regime of diet and antibiotics isn’t working I need to try an alternative approach. This will mean a heftier set of side-effects, which I’d rather avoid. I’d rather avoid an even further broken heart too, though.

Am I getting better?

I am definitely better than when the relapse first hit. Mostly I can get by without crutches. Which counts as an improvement as I’m no longer taking Prednisone, Ibuprofen or Panamax.

But am I still improving? Because I’m not well enough – I’m still severely arthritic.

Am I still improving?

I don’t know.

It’s the questions you can’t answer that keep coming back – of course.

November 20, 2008

Roid Rage

Filed under: Going Places,Reactive Arthritis — terence @ 4:58 pm
Tags: , , ,

I’ve long forgotten his name, but I still remember some of his stories. ‘He’ was a Canadian backpacker who I met in a youth hostel in Cornwall. I hadn’t been travelling long and can remember being rather envious – as I ate my dinner of Vegemite sandwiches – of his ability to cook. More importantly though, new to the world of backpacking I was rapidly becoming attracted to everywhere on Earth. And so I listened eagerly as he told me tales of life in the Canadian ski town that he was from.

The one I’m remembering now is about the jocks. Big burly youths who drove big burly pickup trucks and who chomped on steroids to ensure they remained musclebound.

“Aw man, the worst was when they’d get Roid-Rage. The steroids would drive them nuts and they’d start smashing things up and wanting to fight you.”

I was still keen to travel to the Canadian west but I promised myself that if I ever made it there I’d avoid the berserkers and their trucks.

Anyhow, I am, of this morning, taking steroids (Prednisone). Not, I hasten to add, because I want to buff up for summer or because I want a bigger truck. But because prednisone is very effective in dampening inflammation.

Unfortunately, as our Canadian friends no doubt learned, one way or other most steroids are also very effective at ruining your body. Were I to take prednisone for too long I might end up moon-faced (that’s the reason why you only see photos of the young Che Guevara – who took steroids for his asthma – on t-shirts) and my bones could be damaged (I think), along with other uncomfortable side effects.

So I’m on the roids for a month. I just couldn’t cope otherwise – the pain was too much. The worst I’ve ever hard with my arthritis.

Hopefully, while the prednisone is dampening things down, the other meds I am taking will tackle the underlying disease process and, by the time I’m weaned off it, I’ll be feeling much better anyway. Otherwise, at least I’ve brought myself a month of low-pain living.

The good news is that I’m already feeling better for it.

Great – now I’m off to smash up the living room…

November 16, 2008

Travels with Crutches

I vaguely recall reading somewhere that people in wheelchairs often find themselves ignored in favour of able-bodied companions. I experienced this several times over the last few days as I was wheeled through Wellington, Christchurch and Melbourne airports. It was strange to vanish like that, although I don’t really begrudge the people whose questions passed me by. Almost everyone we dealt was helpful and, god only knows, were the situation reversed I can’t say for certain that I wouldn’t make the same mistake (although now I will be mchair-crutching-14ore careful).

Anyhow, I’ve never been assisted in airports before – even when my arthritis has been bad in the past, I’ve tried to hobble along under my own steam. Lesson learnt this time, though: it’s a huge help. I hate to think what the trip would have been like otherwise.

Thunder storms swept over Melbourne on the morning of the appointment leaving a sky of swollen grey clouds in their wake. Jo and I were apprehensive. Maybe the doctor and naturopath who I see would say there was nothing that could be done. Maybe their prescribed advice would be impossibly far-fetched, or impossible to put into practice. But our fears were unfounded: a change to my medication, a reminder to be strict about my diet, and confidence on their behalf that I could turn this latest relapse around.

Relieved, Jo and I left the appointment to find the clouds broken into small manageable tufts that the wind was busy sweeping away. Nothing is certain yet, of course, I don’t know if the changes will help. But I’m hopeful. Time – the next couple of months – will tell. If the changes work, great. If they don’t I’ll return to conventional approaches, and the heftier set of trade-offs that come with them.

That afternoon, Jo and I made the most of the improving weather by finding a pleasant golden-sand section of Port Phillip Bay and paddling in the almost warm water which glistened under a blue sky and the bold Australian sun.

October 13, 2008


I’m no fan of blood tests.

It’s not a rational thing. I know they won’t hurt. I know the needle is tiny. And I know I need to have them – both to monitor the progress of my arthritis and to make sure that the Warfarin has my blood clotting rates within a safe range.

I know all this.

But none of it can shake that feeling. The suspicion that the thirsty, nasty, little needle-sword is really up to no good.

So why then was so I happy this morning despite discovering that I got the wrong blood tests done last week? After all, wouldn’t this just mean that I had go back to the bleeding room again?

It did, but the mix up which took place was that I got my arthritis tests done instead of my INR (blood clotting). It’s my blood clotting that I need to monitor regularly and frequently at present, while I wasn’t planning to have my inflammatory markers tested for a few more weeks.

And so, had the mix up not occurred, I wouldn’t have learned this morning that my CRP is currently two.

Yes, people, you read that correctly – two. One more than one and so damn normal it makes Karori look edgy (normal range for CRP is 1-7). The last time I got tested my CRP was in the high forties which, we hoped at the time, simply reflected the shock of surgery. We worried though that it might be a sign that my arthritis was returning in the wake of the trauma that my body had just been through.

In the land of chronic illness there is little that can be said for certain and without crossed fingers. But learning that my CRP is normal is good news – it certainly seems much less likely now that I will be revisited by bad arthritis any time soon.


August 7, 2008

Update, a date, and gratuitous surfing

Ok, PET scan results are in and there doesn’t seem to be any active inflammation near my heart. So, barring the unexpected, it’s full steam ahead for the 20th of August for surgery.

The PET scan seemed to indicate that my aorta is less dilated than it appeared, too. So I’m hopeful – though no one can be sure until the actual surgery starts – that I may only need the valve replacement.

The only actual ‘bad news’ as such from today’s trip to the surgeon is that my previous understanding of the risks involved in the surgery was a little on the positive side. In reality it’s more like approximately 1% risk of death for simple valve replacement, 5% for valve and lower root, and 10% for valve and arch up to vicinity of arch.

[Warning, if you are reading this and in a similar situation as me, these numbers are not exact – they are just my surgeon’s educated guesses based on my own particular set of circumstances. You need to ask your own surgeon.]

So there we go.

Now, time for the surfing bit.

July 29, 2008

Radioactive Blogging

In the early hours of this morning, on the edge of an industrial estate, amongst the worn-out outer suburbs of Melbourne a mule stood waiting, shrouded in drizzle; his leather jacket barely keeping him warm in the pre-dawn chill. Behind him a gate opened and a man wearing a lab coat walked out to meet him.

“You are the man for the Wellington job”, his accent was foreign but unplaceable.
“You understand this is radioactive”
“So be careful, we need for him to receive the full dose”.
“Now get to the airport!”

On the other side of the Tasman at the other end of the day, the delivery found its destination – me. Inside a bare concrete cell that someone had once tried to cheer up with pictures from an old calendar, I lay helpless on a bed as another man with another unplaceable accent injected me with the contents from the flask: radioactive sugar. There was nowhere to run. A stern nurse watched from the door. Her accent suggested she was from the East – maybe Seatoun.

Such are the wonders of medical technology. In Wellington we have a PET scanner (at Wakefield hospital). This machine may tell my surgeon whether there is active inflammation around my aorta. And so today I had my scan. They can’t make the radioactive sugar needed for the scan (or at least my scan) in New Zealand though. So it has to be brewed up in Melbourne and flown across the Tasman. All this has to be done in a hurry as the radioactive sugar has a very short half-life.

As for the Pet Scan, it was fine – obviously there were no stern people with unplaceable accents (and the calendar pictures on the wall really weren’t that old). And I only wanted to run ’cause needles still scare the corpuscles out of me.

Pet Scans are way easier than angiograms, more like MRIs in the big scheme of things, although there was the radioactive sugar and then another injection of a radioactive contrast (the same warm flush I experienced during the angiogram – I’m actually quite starting to enjoy the sensation.)

Anyhow, the main point of this post is to gloat: I’m still radioactive. Which, surely makes this New Zealand’s first ever radioactive blog post.


Results in a few days.

July 27, 2008


Here’s the run down.

There is no question that my aortic valve needs to be replaced. And there is no question that sooner rather than later would be preferable.

The two questions remaining are:

1. Is there active inflammation in the area at present.


2. Will my ascending aorta need to be replaced.

Active inflammation is an issue because actively inflamed tissue is harder to operate on.

Click here to read more…

June 22, 2008

She’ll be Right

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:27 pm
Tags: ,

They call him the Professor, although he’s not an academic as far as I’m aware. In the world of Wellington surfing even something as simple as the ability to read a weather map can garner you a reputation for bookishness and a moniker to match.

He’s a slightly portly, balding middle aged man who rides a boogie board and the first time we met we didn’t get off to a great start. We were surfing my regular spot when a wave came through. In all fairness it was probably his, but I hadn’t had a wave for a while so I tried to nab it off him. I was the regular, I figured it was mine. He figured it was his. And quite some grumpiness and nasty stares ensued.

Did I ever tell you that I can be a dork in the surf?

It could have been the beginning of an ongoing enmity – the sort that spoils numerous surfs – but the ocean had other plans for us. A few days later the two of us ended up surfing alone in very good waves at another nearby spot. Now I’m a dork but I’m not that much of one. Neither was he and, rather than wreck the best surf we were both going to have in a while pretending not to notice each other, to our credit we both did the sensible thing. We smiled and talked.

And since then, we’ve done our best to be cordial in and amongst the desperately scare resource that is good Wellington waves.

Sometime last year I was driving to my favourite local spot, when I saw him walking along the road. The last section of that drive is on private property and he took the “No Driving Beyond This Point” signs seriously. No one else did. I stopped and offered him a lift.

“Sure. Thanks”
“Looks like that wind’s swung round to the north”
“Yeah, real clean. I think it was westerly earlier so we’ve got lucky”
“Swells a bit small though.”
“But hey”
“There’s waves.”

By that stage we’d parked the car and were walking to the beach. And I thought I’d broaden the discussion. “So, how’s things been otherwise”, I asked.

“Oh, not so good, I’ve been diagnosed with cancer. I start chemo next week”
“Sh#t. That’s not good. What’s the prognosis?”
“There’s about an 80% survival rate.”

In my defense, it wasn’t the sort of conversation I was planning on having that afternoon. And, really, I’m much wiser if I have a chance to jot down a few speech notes ahead of time. So my reply was pretty much stock standard.

“Oh well. 80 percent’s pretty good. She be fine I’m sure mate.”

At 80% the odds are in your favour. They’re even better at 95%. And better still at 99%.

And it’s these latter two numbers that are following me round at present. For someone young and fit like myself the risk of dieing in a simple aortic valve-replacement operation is probably under one in one hundred. If my aortic root needs to be replaced it’s more like 5 in 100. The risk of a stroke or some sort of brain damage, or other unpleasant complications, is somewhat higher but the numbers are still on my side.

Which is good. But not good enough to stop me from feeling frightened. When it’s you contemplating lying on the operating table, even a small risk of disaster starts to feel uncomfortably large.

Hhhhmmm…so what was my point? Oh, yeah, I figured I wanted to blog about open heart surgery honestly. And being honest – I have to admit I worry. And I suspect that, over the coming weeks, my ongoing battle with this worry will be unavoidable. Something I need to get on top of. And I imagine this is the case for most people in my situation.

And my other point: being on the other end of those stats now, I’m pretty sure that my “she’ll be right mate” response to the Professor wasn’t the right one.” I’ve had people say the same to me, and I really appreciate them trying to be reassuring, but I think if I were in the same situation again I’d say something like “oh, how do you feel about that?”

And maybe I would have, that afternoon, with the Professor, if given more time. But right at that moment a particularly good wave came through. And we were both racing to get into our wetsuits and out into the water before the sun started to set behind the Kaikouras.

June 15, 2008

The Butterfly Effect

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:29 pm
Tags: ,

If a butterfly hadn’t flapped its wings on a warm autumn morning somewhere in New South Wales, then that small low pressure system floating in the Tasman might have never picked up extra water.

And if it hadn’t picked up the water, maybe it wouldn’t have rained so hard as it crossed the lower North Island.

And if it hadn’t rained so hard. I mightn’t have driven my car slushing over the melted gravel roads to a river mouth in southern Wairarapa hoping to catch waves at a spot that never breaks.

And if I hadn’t found those waves, I might never have surfed in the gritty water around the bar as the storm run off mixed into the sea.

And if I hadn’t surfed in that water I might have never picked up that ear infection.

And if I hadn’t got the infection maybe my arthritis wouldn’t have come back so bad.

And if it hadn’t, maybe it wouldn’t have damaged my aorta.

And if my valve wasn’t damaged then I wouldn’t be worrying about open heart surgery.

And if I ever find that butterfly, trust me, there are going to be some strong words.

June 5, 2008

MRI, where am I

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:33 pm
Tags: ,

[Note: some of the info. in this post is out of date; I misunderstood – see here]

Last week I had an MRI scan. Nothing near as dramatic as an angiogram, but claustrophobic enough to make me glad I’m not a vampire and don’t sleep in a coffin.

Anyhow, the purpose of the MRI was to determine whether my aortic root was stretched sufficiently to warrant having it replaced as well as my aortic valve. It was, and this means I’m in for more complicated surgery although, according to the cardiologist, it shouldn’t make for a worse prognosis or longer recovery time.

The other thing the MRI picked up though was the fact that the walls of my aorta are thickened. Which probably means that there is still active inflammation there.

Now this is a problem, as inflamed tissue is harder to perform surgery on. So we need to find some way of reducing the inflammation before surgery. The trouble is that the three top candidates for doing this – steroids, methotrexate and TNF inhibitors – all have side effects that aren’t particularly desirable if recovering from open heart surgery is your thing.

So it’s a bit of a worry. Although – and this I need to bear in mind – not too much of a worry. People on steroids, for example, are subjected to major surgery all the time and do just fine.

Summary: a bit less ok, but still ok. Sigh.

May 29, 2008

The Tracks of my Tears

Filed under: Reactive Arthritis — terence @ 12:33 pm

During my first bout of reactive arthritis I most probably came down with Iritis. I say most probably because, despite the fact that it is a common complication of Reactive Arthritis, and despite the fact that I had textbook symptoms, the Ophthalmologist decided – based on the results of a diagnostic test – that I had some sort of scratch or a problem with cold sores instead. In all likelihood I was misdiagnosed and I spent several very, very painful and anxious days until fortunately the problem started to clear up of its own accord*.

I was lucky that my eyesight wasn’t severely damaged at the time. But it wasn’t and I still have great vision. The only thing that seemed to change is that my eyes became much more sensitive to the cold. Now, whenever I’m walking in cold air, they stream tears. I know that most people’s eyes do this a bit. But mine seem to go into overdrive.

So there I was, walking through manners mall after work today, crying a river…I wonder what it looked like to everyone else.

*WARNING: Iritis is not necessarily self limiting. And can do real damage. If you think you have it get medical attention.

April 24, 2008

An Angiogram

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:51 pm
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Monday was angiogram day. That mean having a hole snipped into an artery in my groin. Through that hole a tiny wire and catheter were poked up into my heart. From the catheter radioactive liquid was squirted. And from that liquid an image of my heart was picked up by x-ray(?) and shown on a TV.

From what he saw the cardiologist determined that I don’t have coronary problems to accompany my aortic ones. Hooray! What he did find though was that my aorta has been stretched. So that might have to be replaced with the valve too. Not so hooray.

Anyhow, I’m one step closer to surgery and you’re wondering just what it’s like to have your heart squirted with radioactive stuff.

Well…the actual squirting was odd, but not that bad . First I felt a warmth in my chest a bit like that caused by a shot of whiskey. Traveling at the remarkable speed of my blood, the heat then raced to my head and my feet. It happened in a moment. Your blood really, really doesn’t mess about in its trip around your body.

I’d be lying if I said that the angiogram as a whole wasn’t a little unpleasant. But it was bearable. Easily bearable.

It was my first time in an operating theatre too – and that was kind of surreal. In the background they played reggae music (I’m not really a fan of Wellington reggae but it did help me relax). And at one point I swear that both the nurse and cardiologist were humming and swaying too it. I half expected them to break out into song. And for a moment, I was lying there on the edge of the musical of my heart problems. “His heat is bad, it’s very sad…”

Musical or not, the cardiologist, nurses and assorted medical personal were all professional, friendly and kind. It really helped.

As I left the theatre, two other people were queued up behind be waiting for similar procedures. For a whole morning, at least one day a week, the doctors and nurses in that unit perform angiograms and similar operations. One after the other. I can’t imagine how stressful this must be. I’m in awe of people who do this for a living.

April 1, 2008


Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:52 pm
Tags: ,

It wasn’t that long ago that I wrote a post on how good it was to be largely free of the symptoms of Reactive Arthritis. I spoke to soon, I guess. Some time over the last few years, inflammation has damaged the aortic valve from my heart. It is now leaking, causing my heart to stretch. And I need the valve replaced before my heart itself is damaged. Valve replacement is open heart surgery but the risk of serious complications is small. If things go ok I can expect a 1-3 month recuperation period and a more or less normal life afterwards. If I stay within the public system I can expect to wait between 6 and 9 months for surgery.

I’d be lying if I said I wasn’t anxious, or disappointed – the need for surgery has derailed what were looking to be exciting plans for the year. But, of course, things could be worse.

Anyhow, I intend to write more here about events as they unfold. I do get the odd person coming through to this site who has Reactive Arthritis, so maybe my experiences might be useful. You can reciprocate too. Any experiences of open heart surgery (doesn’t have to be stemming from arthritis, or even valve replacement) are much appreciated in the comments box below.

[Update: If you do read this and have Reactive Arthritis – don’t worry. Heart problems are a very, very rare complication of Reactive Arthritis. A rheumatologist friend of mine described my situation as a ‘textbook complication that you only ever see in textbooks’. So the odds of you encountering similar problems to me are small.]

Oh – and I think there may be a couple of people from work and the immediate surrounds who read this blog. My need for surgery isn’t a secret, but it isn’t public knowledge yet either (partially because I can’t really figure a way of telling people…)

February 14, 2008

Feeling Bad, Feeling Better

Filed under: Reactive Arthritis — terence @ 12:53 pm

A couple of days ago my bus was late. I’m not a particularly patient person so instead of waiting I hopped on a No. 1. and got off at Island Bay. From there I walked. The walk wasn’t bad, actually it was pretty good. 15 minutes up hill as suburbia did its best to put on a pleasant face in the lazy evening light.

A couple of years ago I tried a similar trick. My own bus had obviously vanished into a hole in the space time continuum somewhere along Lambton Quay so I caught the Number 1. My plan was different back then though – I figured I’d get off and call my girlfriend from the pay phone at the Island Bay shops. She could come and get me. The trouble was, the pay phone was broken and my plan derailed. Back then the hill up to my house stretched away like an unassailable alp. Climbing it would have taken me at least an hour and involved considerable pain. Fortunately, I was rescued by a friend who just happened to walk out of the library at the right moment allowing me to use her cell phone to call my partner.

A year before that I decided that my outdoors task for the day was to go and visit the library. I never got there. I couldn’t get a park within a block of the library and couldn’t bear the thought of hobbling two blocks on crutches.

Things aren’t perfect now – I lost sleep last night to a gnawing pain in my back, my wrist is sore as I type this – but they are a lot better.

And that really counts. I’m stating the obvious but being mobile makes life a whole heap better, and happier. That’s obvious but the strange thing is that it took me a long time to realise just how exhausted and disheartened acute arthritis left me. I’m really glad to be free of that burden for now. And really, really full of admiration for people who carry similar or much heavier ones. Now I’ve had my feet in those shoes I know just how uncomfortable they are.

January 1, 2007

Trying to Muddle Through: Living (and Learning) with Disease

Filed under: Reactive Arthritis — terence @ 12:55 pm


Last year I wrote about why there is no good name for the illness that afflicts me. Of the two alternatives, Reactive Arthritis is the better but, as I wrote back then, when people hear the word ‘arthritis’ they think joint pain – and that’s only half the story. Exhaustion, skin problems, eye problems, and mild fevers have all accompanied my ‘arthritis’ at one stage or other. Heck I’ve even had painful stores on the inside of my nose. Even on its own, joint inflammation has been enough to hobble me – reducing me to crutches at times – but, add to this everything else associated with the illness and, hey presto, you’ve got a life where, when the disease it at its worst, simple things like driving to the library can be near-impossible.

This isn’t a cry of self pity on my behalf: things could be much worse. (Indeed, I’ve got friends for whom they are much worse.) All I’m saying is that there has been quite a change in my life since the carefree, globetrotting, surfing days of my 20s.

Naturally enough I haven’t taken this lying down. I’m lucky enough to come from a relatively wealthy family, meaning that I am in the position where – within reason – if I come across a potential treatment pathway, I can afford to follow it. I’m also reasonably well-educated, with access to the internet meaning that I can supplement the knowledge of the medical professionals I see with my own research.

So right from the moment – sometime over the summer of 2002/03 – when it looked like I wasn’t going to shake the second bout of arthritis as easily I had the first (which came and went of 1999), I started to take an active role in overcoming my illness. Or, at least, in attempting to overcome my illness.

Since then the ride has been up and down.

In late-summer/autumn of 2003 I got much better; over the winter much worse. I improved again over spring 2003, but relapsed very badly in December 2003. For the next year, until late 2004, my life was pretty severely limited by illness. I did manage to complete my masters degree (including a research component in Brazil), but by the end of this process I was knackered – on crutches, in pain and fatigued. And for the whole year I couldn’t surf: something that might sound frivolous but surfing’s been central to my life ever since I was 13 and it’s something I really value; so in many ways it’s my yardstick of wellness.

Over the summer of 2004/05 I got somewhat better. I was freed from my crutches, and able to surf again. And generally found life much easier to live. I was far from rid of pain though, and not even as good as I had been in 2003, but I was mobile enough to live a relatively normal life. Or I was up until June 2005 when, probably due an ear infection I caught surfing, I relapsed big time. By far and away the worst my arthritis had been – out of the water, back on crutches, and taking strong medication on top of this just to be able to get around.

From this low point things started to slowly and shakily get better; the rate of improvement increasing dramatically in early 2006 when I changed treatment regimes (more about this later). Which leaves me, at present, well enough to surf again. And – for the first time since 2002 – able to go for recreational walks. This is great: I’m not out of the woods, but the foliage has thinned. And I can see some daylight between those trees.

The journey here has been far from straightforward. Along with the twists and turns in the level of illness there have been different treatments taken, bifurcations, and dead ends. Here are some of the paths I’ve investigated, what I’ve learnt, and the pitfalls…

Mainstream Medicine

The wonders of modern medicine never cease to amaze me – in the space of just a few hundred years it has contributed to a staggering rise in life expectancy. It has provided us with the means to eradicate small pox and almost rid the world of polio. Its achievements mean that if you were to catch the Black Death on holiday in Mongolia, on returning to New Zealand you would – rather than being responsible for wiping out a third of our population – be cured with a nice easy course of antibiotics.

Mainstream medicine hasn’t, however, managed to come up with easy answers to all the diseases that ail us. And, unfortunately, Reactive Arthritis is one of those diseases where there is, as yet, no cure. Instead, there are a variety of potential treatments that may work to an extent but which also come with costs of their own (side effects). This means that there are tradeoffs to be worked through.

My first brush with conventional medicine came as I limped my arthritic way around Charring Cross Hospital in London (1999). There – a misdiagnosis at the GUM clinic and a bad experience in ophthalmology not withstanding – I received excellent treatment. The doctors in Rheumatology were great; they didn’t do much other than prescribe Non Steroidal Anti-Inflammatories and drain the fluid – ow! – off my knees; but the disease started to trend for the better pretty quickly and what they excelled at was helping me learn about the condition – and treating me like a human being. Which, particularly in a big dehumanizing city like London, meant something.

My second brush was back here in New Zealand (2002/03) where I – after waiting for several months for an appointment with a registrar – had a fairly brief appointment, during which the consultant was called in and in which I was prescribed Methotrexate, given an A4 handout informing me about the drug, directed to the door and told to come back in 6 months. Within an hour of getting home I discovered enough about Methotrexate to make me decide not to take it. Methotrexate is an immunosuppressant which can have considerable side effects. Can doesn’t mean will. And Methotrexate also has a reasonable track record when it comes to significantly reducing the effect of arthritis. Yet, at that point in time, where I’d only been badly arthritic for a couple of months and given my previous experience, in which I got significantly better after a few months whilst doing nothing in particular, I thought that taking such strong medication was jumping the gun just a little. My confidence wasn’t boosted by the fact that the doctors forgot to schedule me the regular blood tests which are critical in detecting if any damage is being done when taking Methotreaxte. So, I never took the Methotrexate.

And began considering the alternatives.

Richard Dawkins (I think) once wrote about alternative medicine that (paraphrase), “once an alternative medicine is proven to work, it’s no longer alternative, it becomes part of the mainstream.”

If only things were that simple. The scientific method that Dawkins champions and which is central to mainstream medicine has much to be said for it. Logic, cause and effect, evidence, double blind trials – we take these for granted but each represents a small revolution in its own right. And a vast improvement on what came before. Yet there are limitations to the process.

The first is economic: developing a treatment and getting it tested thoroughly costs – a lot. This means that the type of treatments more likely to make it into the mainstream are those where money can be recouped through patents. That means drugs – as opposed to things like diets. The economics of medicine also means that the large drug companies that develop many modern medicines, having sunk considerable costs into their development, are loath to see a medicine ruled out at the last minute when it fails to prove efficacy in double bind trial or shows adverse side effects. And this in turn means that drug companies often find ways of increasing the chances that the studies they pay for produce the results they want.

According to Richard Smith, a former editor of the British Medical Journal:

Paula Rochon and others examined in 1994 all the trials funded by manufacturers of nonsteroidal anti-inflammatory drugs for arthritis that they could find [7]. They found 56 trials, and not one of the published trials presented results that were unfavourable to the company that sponsored the trial. Every trial showed the company’s drug to be as good as or better than the comparison treatment.

In the same article Smith refers to other meta-studies (studies of studies) which found similar skewing – drug company funded trials producing more favourable results than independent trails etc.

It’s important to remember here that not all medical studies are funded by drug companies – the majority are in US journals, but not in the British Medical Journal – and it’s also important to restate that, even studies produced by medical companies are often accurate. However, the economics of the process does mean that the scientific method, which as an ideal is certainly the best way to assess treatments, becomes somewhat tainted by the reality on the ground.

Compounding this is the inherent conservatism that comes with the scientific method: science requires that something be proven before it is accepted as truth. And that’s fine – this is the scepticism that has rid us of leaching and alchemy. Yet there’s a quasi-sociological component to this scepticism too, I think. Something which means that for experts in a field, an element of self-worth becomes attached to defending the existing consensus against new ideas. No longer is reason the reason for people’s scepticism – emotion plays an active role. I don’t want to overstate this, I think it’s much less prevalent than in the social sciences (where I have some experience). Yet the history of science – and scientists who have been ostracised until they were eventually accepted as correct – shows that this really is a problem, at least in the short term. In the long term, usually, the strengths of the scientific method mean that the truth prevails – eventually. This isn’t much use if you are sick now though.

Which brings me back to Dawkins’ quote – what if there is an alternative treatment out there that might cure Reactive Arthritis but which hasn’t become mainstream yet because, say, it can’t be patented, and so money can’t be made off it? Or because it simply hasn’t been round long enough to win over the mainstream?

Alternative Medicine

It’s this ‘what if’ that led me to try several alternative treatments – dietary supplements, homeopathy, iridology – and to consider others. None of these alternatives had any of the potential adverse side effects of Methotrexate, nor did they – as far as I can tell – help with my illness. To be fair to the alternatives one of the things the iridologist prescribed – eliminating gluten from my diet – is similar to something I am doing at present, and I may not have tried the other alternative remedies for long enough.

There is a good reason why I didn’t persist with the alternative remedies for that long though – their cost. None of the alternatives were cheap. And while it’s fair to say that, with most alternative remedies, even if they don’t work they probably don’t do much harm (unless you are duped into taking them instead of conventional medicine and then are harmed by the disease), they certainly cost. Which means that – when they don’t do what they claim to do – their continued sale is basically a consumer rip-off. And this brings me to the main limitation of alternative medicine. While their being freed from the rigours of having to be tested forever until the scientific establishment is won-over means that their might be alternative treatments out there that can do things that conventional medicine can’t, it also means that there are a whole heap of alternative remedies out there that make claims that simply can’t be backed up. Whether this is the result of the people who produce these remedies genuinely wanting to believe or simply the rip-off instincts of snake-oil salespeople I don’t know – I suspect the former more often than the latter, but the main point is that my experience with alternative remedies is that they have typically failed to live up to the certainty of efficacy expressed by their practitioners and by product advertising. This doesn’t mean that they will never work for you, just that an element of scepticism is best brought with you when travelling down the alternative road. This may compensate for the lack of scepticism that you will find amongst your fellow travellers.

Side Stream Medicine

For suffers of Reactive Arthritis, mainstream medicine and alternative medicine aren’t the only places to go in search of a cure. There’s a third alternative: something which I’ll call side-stream medicine.

[SPECIAL DISCLAIMER: The next few paragraphs are represent an area of my understanding that is limited – please don’t take them as gospel]

As the name suggests, Reactive Arthritis almost always occurs as a ‘reaction’ to another (trigger) illness. Typically these trigger illnesses take the form of bacterial infections (although viruses can be involved too). Most of the bacterial infections are common diseases which most people catch and never experience any symptoms other than those associated with the immediate infection (vomiting, diarrhoea etc). However, a small proportion of people who catch these triggers go on to experience the symptoms of Reactive Arthritis. This occurs – usually – because their bodies contain a particular antigen (Human Leukocyte Antigen B*27) [or at least the genetically encoded predisposition to create this antigen – I’m not 100% sure]. The combination of trigger illness and antigen is typically what leads to the subsequent arthritic episodes (I say typically because, as I understand it, occasionally people get Reactive Arthritis while not having the antigen).

The relationship between the antigen and the trigger, and the illness is not fully understood, as I understand it. Most mainstream medical professionals believe that a combination f antigen and trigger lead to Reactive Arthritis through an auto-immune process . An auto-immune process being, in lay-persons terms, your immune system ‘freaking out’ and ‘attacking’ otherwise healthy parts of your body. So in the case of Reactive Arthritis, according to most medical professionals, the only problem with your joints is that your immune system – confused in some way by a combination of antigen and trigger illness – thinks there’s a problem with your joints, and starts ‘attacking’ them, which causes the inflammation.

There is, however, a minority view amongst medical professionals (our side-stream). These side-streamers believe that there is something wrong with your joints, something vaguely akin to an ongoing infection in them. And that your immune system isn’t malfunctioning – it’s trying, ineffectively, to rid the inflamed part of your body of foreign organisms. These foreign organisms may possibly only be fragments of the initial bacteria.

Why does all this matter? It matters because it affects how you treat the disease. If you believe that it an autoimmune illness, then you will treat the disease with Methotrexate, or something similar, which impedes the erroneous immune response. However, if you believe that something along the lines of ongoing bacterial presence is the problem then you’ll want to try something different. Most probably diet and long-term low dose antibiotics.

My first experience with the ‘side-stream’ approach was through a local rheumatologist who I went and sought treatment from outside the public health care system. He was recommended to me by friends of my mother, one of whom he had treated for Fibromylagia (I think). His recommendation for me was eliminating grains from my diet as well as to start taking minocyclin, sulfasalzine, and – later – clindomycin. (The antibiotics in relatively low doses).

I think, as much as anything else I chose the side-stream approach because it offered some hope of a cure, rather than just suppressing inflammation for the rest of my life.

The initial results, taking the medication prescribed by this Rheumatologist (I put the diet in the too hard category, initially, and kept on eating as I pleased) were good – not a cure but a dramatic improvement in my quality of life. Slowly, however, it seemed like my body adapted to the drugs and things became less effective. And eventually, the rheumatologist ran out of bright ideas. And suggested methotrexate.


Purely by chance at about the same time, as one particular side-stream seemed to be mergeing back into the main current, I was introduced to the friend of a friend – a chap who had suffered from reactive arthritis but had seen his condition dramatically improve after seeking treatment in Melbourne from a naturopath and GP who worked together. He was the first person I’d met with Reactive Arthritis, his experience with the illness was similar to mine, and his experience in Melbourne once again provided me with hope of an alternative and cure. So off to Melbourne I went.

My experiences with the doctor/gp there were – at a personal level – kindof difficult (the subject for a future blog post). But the main thing was the treatment they suggested – eliminate all grains but rice from my diet, eliminate dairy from my diet, several new antibiotics – has, apparently, led to my most recent dramatic improvement. I say apparently because it is possible that my illness has gone into spontaneous remission over the same period of time (possible but probably not likely). At present, at least, my muddling through appears to have worked (somewhat).

So What Have I Learnt Thus Far

1. It pays to learn up on your illness and prospective treatments. An element of self-empowerment will help you decide what’s best for you. It will also make you feel better (I know for me some of the lowest emotional states in the course of my illness occurred at the beginning when I really didn’t know what was happening to me). Where there are treatment options it may also assist you in choosing what is best for you. Having said all that, there are people who dedicate their medical careers to learning this stuff (rheumatologists in my case). It’s worth listening to what they have to say (even if not 100% uncritically).

2. The Internet – I could never get it to live up to its promise when it came to leaning. It had lots of stuff from medical dictionaries, and some alternative remedies (lots of promises and costly stuff for sale). I was never able to find the main thing I wanted – other sufferers’ experiences and what worked for them. That being said I’m not a patient searcher.

3. Alternative Remedy Schmemedy. I’ve lost count of the number of people I’ve spoken too and websites I’ve read which portray natural herbal remedies as nice healthy, bound-to-succeed alternatives to mainstream medicine. Bollocks. I’m not saying that alternative remedies have nothing to offer. The big one that seems to work for me is diet. However, they aren’t a panacea. And the silly dichotomy that you often hear – western medicine bad, alternatives good – is simply wrong.

4. Don’t underestimate the psychological impacts of chronic illness. This is the topic for another post really but for now I’ll just point out that debilitation is hard work mentally as well as physically. That probably sound like stating the obvious, but it came as a surprise to me.

5. What if, what if… What if I’d started taking methotrexate right from the start? I might have spent the last few years mostly symptom free. I might have been hamstrung by side-effects. I might have been trapped into dependency on a drug that was slowly damaging me. In not taking it I may have led to my joints being permanently damaged as a result of ongoing inflammation. These trade offs aren’t easy, and I’d be sceptical of anyone who told me that they didn’t exist.

6. Meeting your fellow sufferers is well worthwhile. Don’t blindly follow their advice, of course, what works for them may not work for you. Nevertheless, no one else will have the same intimate relationship with your disease as your fellow sufferers.

7. Always keep searching.

8. Don’t be surprised if it is hard to find the time to devote to overcoming your disease. Just dealing with it, on top of all the pressures of modern life, will take time enough.

9. If you have Reactive Arthritis and want to learn more about the treatments/practitioners I’ve mentioned please email me (following carefully the advice besides the words email me up at the top right of the blog).

10. These people are supposedly the centre of the antibiotic arthritis treatment movement: http://www.roadback.org/ . Have a look (I have to admit I haven’t yet – I have read their book though).

That’s all I can think of for now.

November 28, 2005

Another day in aching bones…

Filed under: Reactive Arthritis — terence @ 12:57 pm

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.

November 6, 2005

No good name for this illness

Filed under: Reactive Arthritis — terence @ 12:58 pm

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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