Thursday, 6 October 2011

Five months on.

Well its about 5 months since my last post and what have I learned.
1) Its been 7 months since I gave up smoking and although I still miss it I do feel better.
2) ASRA is growing slowly 49 members now still a lot to do but have a great Admin team.
3) Have faith in myself and be happy with who I am.

My Ankylosing Spondylitis has got worse over the last few months my Kyphosis is causing my head to lock closer to my chest wet shaving is near impossible now and its hit and miss whether I cut my throat or not. I did take the advice of my good friend James and brought an electric razor. My large joint at the top of my spine is well on the way to becoming fused now and I have very little movement. My walking has become slow and I have to use my stick all the time when out and even indoors some days. The Planter Fasciitis has been permanent in both feet for three  months now and my Ankles swell and become very painful.
My Rheumy nurse suspected Rheumatoid Arthritis a while back and it looks like she was right as my knuckles are very painful. The spurs in my shoulder are still giving me pain at night but my left hip is not as bad as it was. My breathing is not so good now my ribs are really restricting me having to use inhalers a lot more. The first photos are 9 months ago.

With all the things that have happened over the last few months ie The sudden loss of my brother and other illnesses in the family my own Cancer scare I have learned that what is important is not that I look like Quasimodo or cant move around as much that's only the shell I live in the true me and the happy me is inside. I'm proud to be different stuff the people who stare and laugh I just stare back they are all boring and the same I'm special we who have AS are all special we are strong and caring people.I see my Rheumy nurse for my check up next week will find out my measurements then.
The photos below are now please ignore dates on photos I forget to change date. I think the deterioration is clear. I'm showing these because I hope it will help others and show what can happen If you are lucky and get an early diagnoses please please exercise and be aware of your posture don't end up like me and all the others who's diagnosis was too late to stop the damage.


  1. I admire you for having the photos taken, I am not so brave, I avoid cameras and mirrors!! I am probably not as bent over as you are yet, as when I am sitting I can look not too bad, but when walking with the stick I have a lovely view of the pavement, and cannot see the sky. There is pretty extensive fusion, this is all despite physio, metal work in my back 20 years ago. Yet others have fused straight-does't look so bad, but is equally disabling. Which is why I believe that we are all individual and some may never get this way no matter what, where as others are more likely to bend despite efforts to contain it. However, taking all steps to stay fit and strong and straight should always be encouraged and this is the kind of information that is needed to encourage it. Well done. I hope you are feeling a little better than you were earlier this week.

  2. Thanks for posting photos and sharing. It is a hard journey. I appreciate the encouragement to work on exercises and stretching, even when it seems like too much.