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.