Wednesday, 4 December 2013

Ankylosing Spondylitis my story

They're all at it (blogging that is!!!! so I'm going to have a go !)
Ill liken it to being  stabbed although I stress the word  liken!
That was the last football match Ive ever played. I couldn't run because of the pain which lasted 7 years, id had numerous MRI scans over the years but this one showed I had a slipped disc which I had subsequently had  operated on in 2000.
Before that Id had nerve tests, physio,  been to see chiropractors osteopaths, had pain injections, epidurals ,blood tests I also had taken myself off to new direction Pilate's in Buckhurst Hill after reading lots of text about the benefits for people suffering from spinal complaints or injuries as well as well as strengthening core muscles which can help in a multitude of sports something I still do to this day.
I've had some interesting comments and theory's over the years from health professionals and doctors.
one told me I should be drinking 3 litres of water a day ( bet he doesn't drive a cab for a living).
Another asked what I thought I had?
Another told me I should try swimming something Ive been doing regularly for the last 20 years, and also he couldn't give me a new neck .
The pain had reached 9/10 on my pain chart it was unreal  , I couldn't look to my right at junctions whilst driving it was that stiff.
In 2010 the pain had reached my chest I had gone to a&e around midnight on a Friday night complaining of chest pains, I was connected to an ECG MONITOR WITHIN THE HALF HOUR, although the pain was now 10/10 it showed no heart problems and I was
"released without charge"!!
The neck pain wasn't getting any better especially first thing in the morning, it all came to a head in August 2011 I had ridden 75 miles on the Sunday by the Thursday I couldn't get out of bed I stayed there pretty much till the Monday, my right  knee was almost double  the size of the  left one . I managed to get an appointment to see my doctor early on the Monday morning and was keen for me too see a rheumatologist , as long as you don't send me to see the one you sent me to  see last time I said, she scrolled through computer and she found a letter dating back to 2009, on reading the letter it was discovered he had diagnosed me with suspected Ankylosing Spondylitis, "what's that I replied" why wasn't I told of this?
I asked to see another RHUEMATOLOGIST one on the list had PROF before his name!!!!!
He sounds like the man for me I thought , I'm rambling on a bit but after talking to Prof Hassan Tahir he almost confirmed there and then I had AS albeit further blood test and a gene test for hla b27, which im told 96% OF AS sufferers have this gene. At this point he asked if id like to go on a clinical trial which im still doing to this day.
6 months later after a course of steroids lots of rest lots of good direction from the PROF!! THE PAIN HAD SUBSIDED, I started doing some light spinning on my bike, then a light mountain bike ride 5 months later I returned to triathlon.
Since that day I've competed in numerous swim/run/bike events and on 31/08/13 at 13.15 pm I crossed the line at Rutland water Leicestershire after 6 hrs 45 min 14 seconds at the Vitruvian triathlon a half ironman or middle distance triathlon involving a
1900m swim
85km bike
21 km run
its definitely been a  marathon not a sprint after diagnosis but with a lot of training some fantastic care and advise from Prof Hussan Tahir and Noel thatcher my trusted physio /adviser and all round good guy with a few medals!!!!!!!!!not forgetting the clinical trials unit at whipps cross hospital and the  bucket load of self belief I have,
I never gave up on my dream, a lot of AS sufferers because of the severity of there condition would be unable to do what I do, its a silent crippling condition with no visible signs.
I speak to Hassan Tahir regularly about my condition and the sports and challenges I take on its always taken with a puff of the cheeks a raised eye brow and normally met with "NUTTER"
did my goals end there in Rutland water " NO CHANCE" the thought of a full ironman never leaves my head, ive entered Ironman Zurich 2014 its a  3.8km swim 180 km bike & 42 km run   I have to balance my condition with my goals ill run it by the PROF! later this month at the clinical trials unit.
My condition will get no better so the clocks ticking and the severity of it is obviously un known .
Ill leave you with one of my favourite sports quotes

 "our greatest glory is not in falling but rising
every time we fall"


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