I was born and brought up in SE London and left the UK in my teens, sailing to South Africa and taking the train up to the then Rhodesia now Zimbabwe. I settled there and stayed until I left for political reasons in 1996. As a youngster I wasn’t too sporty but enjoyed judo and some riding, loved tennis in later years until I could not lift my arm any more. I had severe back pain aged 22 and it was attributed to a ruptured (slipped) disc, had several manipulations under anaethesia then a laminectomy at L4, followed the next year by another op to clear the bone growth at L3 and L4. So from then on I had a really weak lower back, never lifted my baby son at all and wrist pain was sorted by a decompression of the carpal tunnel. I had 8 ops all told and I started in the 90’s to get a dowagers hump which depressed me immensely. I was still in Zimbabwe and had a full life, camping, swimming daily, lots of partying and working hard in the sun. I was by myself having divorced and left my son with his father in the family home so I worked to compensate. Years of medical bills, hassles with Medical Aid companies (a type of insurance paid through salary and part by the employer) started to take its toll, drug costs were immense, physio was becoming too painful (and dangerous as I now know), work was scarcer than ever so I made the decision to return to the UK. It was not an easy move and I came to Northern Ireland as I had family here but had never lived here so was in a different culture again.
My new GP here diagnosed AS for the first time, I was appalled to think of all the nonsense I had been through, never knowing the problems were ONE! Iritis I had been told was my being ‘very poorly and needing to drink lemon barley water and sleep a lot’ (I AM NOT JOKING, this was a locum GP in Harare) when I could have lost the sight in my eye! Lucky for me a specialist was nearby and treated me immediately and thereafter. In NI it took me 7 years for a referral to a Rheumatologist and I am as confident in her as I can be, I have tried Enbrel after a year of tests and hatred it with a passion so stopped. I now use a stick, wrist supports, have no movement at all in my neck, cannot lift either arm, knees and ankles certainly don’t belong to me and after a 2nd heart attack and a pulmonary embolism am now back on Naproxen again after 6 months with no NSAIDS at all. I stopped work after the first heart attack and haven’t driven for 10 years. My confidence left me one day after years of bush bashing in my truck so I now rely on taxis or lifts. I always say that AS only stops me driving and getting things off the shelves, but recently it is limiting me to a point where I have been out of the house 16 times in the last 7 months, a crazy situation. I try to smile and like to laugh, my cats and fiance manage to keep me amused and busy enough, a quiet day in the house doing the minimum of chores is exhausting. I run a small cupcake bakery from home and limit what I do to vintage and craft fairs )legs permitting) and plan to bake for my own wedding in October. So that is me, 4’10 bundle of energy neatly (and thoroughly) camouflaged beneath a layer of flab and a veneer of ‘I am ok’