I've put this off for quite a while but I guess if I'm going to do it I have to start somewhere and sometime.
It feels very strange to be writing a Blog, first off my life really isn't very interesting and secondly I can't imagine anyone wanting to read it (these are my daily reasons for NOT starting)however then I think about the real reason that I considered doing a Blog, the only reason really and when I think of that then I feel I should and that I want to, because if someone is bored one day and comes across this and gets just the teensiest bit of help or hope from anything I'm blurting out and takes the link to NASS then its worth it.
A couple of years ago I was diagnosed with ANKYLOSING SPONDYLITIS also known as AS.Turns out I'd had it for years, since my early 20's but all the signs along the way I'd ignored or shelved, and when the pain got really bad as I turned 30 although I saw a GP nothing came up so again trundled along. However in 2009/10 the pain grew unbearable also I started to lose energy. Now I was always a bit of a Duracel bunny and had more energy than most, although I always had episodes of having to flop. But here I was making excuses not to party !!
Eventually I couldn't do very much at all and was making constant trips to the Doctor. He did every test imaginable but everything was negative and eventually after struggling with what I now understand were constant AS flares I got so weak that I got a simple cold type infection in Febuary 2011 and ended up in ICU at the Royal Sussex in Brighton. They were amazing and saved my life. I had Sepsis, Pneumonia, Kidney failure and was dehydrated. All the Doctors and Nurses there were just incredible.
It took a while to slowly recover from that and here is an opportunity to publicly thank the wonderful friends that Charlie and I have because quite frankly without them I don't know how we would have coped. The staff at the Royal Sussex, our good friends, and also all the members of All Saints Church, Patcham who prayed for me constantly I thank them all.
My first Rheumatology appointment was due a month after I came out of Hospital I was thinking some blip in my life had happened, all was now well I was just weak and would soon bounce back....Wrong. I wasn't told anything on that visit but was referred to Physio and had a second appointment in a few months. Unfortunately now all my symptoms had returned and I was getting worse. Eventually I was diagnosed. But here's the thing and this is the reason I'm doing a Blog....I was told "You have Ankylosing Spondylitis" (at this point I was hobbling on a stick I had severe Fatigue I was in constant severe pain and looked and felt double my age)......"Come back in 6 months"
Firstly there was a sense of relief. I had a diagnosis. When you feel so so wretchedly ill, have no energy whatsoever and every movement causes you pain and No one can tell you why (and remember I had probably had every test under the sun in ICU) to finally get a diagnosis to know that you're not imagining it, that you really really can't just pull yourself together....Well yes its a Relief. I went from someone who has always disliked "labels" in life to gratefully accepting this one.
Then my fear was what was going to happen..."Will I bend?" I recall asking. Not if you do your exercises was the Consultants reply. Which freaking exercises no ones mentioned exercises!!! I asked if NASS was a good idea....."Oh yes" he found a number " here you are"
You see thankfully my Physio at the Royal Sussex,Brighton was brilliant and he told me that they felt it might be AS but as I test negative to the gene they were exploring further. With this information I found out about NASS and the local groups that meet weekly.
So basically I was given my diagnosis and told he would see me in 6 months.
Not good enough. And I wonder to myself , how many people are given this diagnosis in this, or a similar way.
That Thursday I went to the Brighton NASS group , The National Ankylosing Spondilitis Society. you can find the link to NASS on my Links page.....there are groups that exercise together all around the country and the website will help you find them. From NASS you can find out all about AS because there is a lot more than "You have AS" to find out.
Also, The Royal National Hospital of Rheumatic Diseases in Bath. This is THE most amazing place but I'd better talk about that later.
Going to the group was just wonderful not the least because that first session I went to happened to be the fortnightly Hydrotherapy and what a treat that was.
I soon found that I couldn't keep up. I did in the actual sessions but they floored me and I was Flaring badly again...I still wasn't on proper medication. I did find out about Bath and the fantastic Rehab course for people with AS that they hold there. My new GP referred me and I got a place and this is where it all started to get better....and why I'm now able to start painting in my beloved oils again. I have to pause here because altho Ive been stopping and starting I need to have a real break before I get too too stiff.