Before I begin the story today I want to share something relating to my last blog when I spoke about the bone scan I had, and was told it showed nothing up when I had seen it did.
Oddly the day after I wrote that blog, I had to go into my doctor’s surgery to review a statement they were going to send to a life insurance company. On this form they had listed every investigation I had had, and every time I had visited a doctor in my entire adult life. The history, laid out like that, screamed Ankylosing Spondylitis, although it was spread over years. It felt really strange reading it and then I saw this. Whatever the bone scan test was called and – “take up in Sacroiliac Joints.- 2002” SO IT HAD SHOWN UP!.THE CONSULTANT HAD LIED!
My hands were shaking, my heart pounding and I felt really sick when I saw those words. I was a mess. I told the woman on reception, at the time I’d been told nothing had shown up on that scan, she wanted me to tell a doctor, but I said “What does it matter now, it makes no difference now I have been diagnosed.” I couldn’t believe it though. I was actually diagnosed in 2007, five years after this. I could have been diagnosed in 2002 and not gone through the period of my life I am about to tell you about. How crazy and cruel. Lord knows what permanent damage this period of my treatment has caused.
So anyway, let me now begin the period of my story from when I was told that scan showed nothing up, until I was finally diagnosed.
I got into another period of physiotherapy treatment first. The female physiotherapist was very nice and considerate and patient. It wasn’t like it had been when I was recovering from my accident, then I was in a gym for an hour with 15 other people and given 15 mins of ultra sound and barely any attention – this was 1-2-1 treatment.
She gave me Pilates style exercises to do daily, to tighten my stomach and lower back muscles, to support the joints in my back (a plus of this was I began losing weight). She also told me to try sleeping with a pillow under my legs at night or between them, to relieve some of the stress on my sacroiliac joints, that was an immediate help.
I still do this. It’s so natural to me now, having the pillow there, when I turn over, I instinctively move it in my sleep.
However, these things did reduce the constant pain I had in my joints but they did not prevent flare ups of pain. I would still have those sudden outbreaks when I couldn’t move at all and I’d need to tell my husband to get my painkillers and bring them up to me before I could even get out of bed.
On those days to turn over in bed I needed to hang on to the headboard and pull myself over because my lower body and back wouldn’t move through the excruciating pain.
I had an automatic car by then, and I have to say I was a bad girl, I didn’t like giving in to AS so I did used to drive the 15 mins into work even when my legs didn’t move easily. On those days to move my foot from the accelerator to the brake, I’d have to pick my leg up at the thigh and shift it over. Thank heavens I never had to do an emergency stop, although I’d probably have been OK, I do have very quick reactions (note this is past tense, I don’t do this now and I don’t recommend it, but no one would have supported me in getting hand controls fitted, would they, they didn’t believe anything was wrong).
So anyway, every couple of weeks I went back to the physio and she asked how I was getting on, but I could never say I had totally recovered because there was always some flare up to speak of.
After three months of working my way up the waiting list I got to see a doctor in the pain clinic at the hospital. On the first assessment he played what I am certain was a funny little trick to test if his patients were really ill.
Or perhaps he only decided to test me?
I have always wondered if there was something written on my hospital notes saying “don’t believe this woman” – laugh.
I lay down on a hard narrow treatment bed on my back and then rolled to my side and onto my stomach, awkwardly. I wasn’t in flare up but even when I was not in flare up my sacroiliac joints had some constant level of pain by that time. When he had finished pressing my sacroiliac joints he asked me to roll back onto by back, which I did, again in slow awkward movements. Then he said “are those your keys?” pointing to a place beside my left hip, as if I would suddenly sit up and reach for them and look. Ha ha ha ha ha, as if I could. Knowing there was not a hope in hell’s chance I could either just sit upright from lying flat, or suddenly twist sideways to look I just lay still and looked at him, thinking ‘you weirdo’ as I remembered I didn’t have any keys on me to drop.
He turned and went to write up his notes. Now surely that was a trick. Anyway the outcome of that was I was accepted into the ‘Pain Clinic’, like I had passed some sorority test, and began their treatment journey… more next week…
AS is my burden, writing is my escape.
And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient).
My debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). Sapphire Star Publishing are the publisher. If you want to find out more got to www.janelark.co.uk like me on Facebook or follow me on twitter