I am in my forties, and I feel very young at heart but the suffering of A.S. is a strange conflict, with having to realize the limitations which have been imposed upon me by this damn disease! well, I will fight it that's for sure. I was considering feeling sorry myself but that could be hard work as well.
I have had A.S. for 10 years or so but was only diagnosed after recent extensive tests and a consultant associating my previous case of Iritis with all the other symptoms I have had, it was a relief to know that "IT" had a name at last!. I always thought the symptoms were down to my active years of sport and in particular Rugby and the injuries I received. It was and still is hard just getting out of a car and the strain and pains it some times puts on my upper body is a pain in the neck in more ways than one. The Pain can be terrible I know the way I curse some times over a slight nudge which I don't see coming from either a colleague or that door which doesn't no which way to open...if you know what I mean?
Areas of my body currently infected by A.S. are my back (I also have a collapsed vertebrate), neck and hips. I live with these friends now just coping the best I can, getting out of bed well, I do it in stages. The first is holding on to the edge of the bed, once I have managed to get there that is! and then tensing my stomach muscles and gritting my teeth to sit up. Once I get my feet on the floor I use the strength in my upper leg muscles which are strong to stand up keeping my back as straight as I can...we all have different ways I dare say. Sleep is difficult as we all know and my average is maybe 3 hours a night. I find that YOGA helps and can increase and give good lower body movement and this helps with tying up shoelaces for example and putting on socks (Yes! major tasks). I sit on the sofa in a semi Lotus position with my feet under my behind (not good for the circulation but there you go) and this gives a good support to the rest of my upper body and also better control when I decide to move or get up. It works for me and I feel relieves that pain which we can get after being in a fixed static position. Mind you I have sometimes in the past dreaded having to move from a position that was really quite uncomfortable but tolerable, into another which could be worse. I hope some one may find this interesting but it has helped me and it is just nice to talk about it to fellow sufferers in this way.
Medication, to date only ASPIRIN has really helped with my case and all the muscle relaxing and anti-inflammatory drugs that I have been prescribed to date, they have not been of any real benefit to me...I do keep getting told that I still have at least 36 more options and combinations to try...so you never know. I have made a note of what other sufferers have used and will put these options to my Doctor. I have just started taking a course to see if they help of a drug called: "INDOMETHACIN" MR CAPSULES 75mg 2 per day.......I will have to see if they help...has anybody had success with it? I would appreciate any comments. Well I must carry on and go for that walk.. I just hope that I don't trip up, fall down a manhole or wait for it... yes!..sneeze!
Kind Regards to you all Malcolm Budd