I was misdiagnosed for about 7 years and told there was nothing wrong with me and needed to see a psychologist. I knew my own body and knew that something was wrong with me. I eventually got diagnosed with ankylosing spondylitis in 1980. By this time l was in excruciating pain and unable to move because of the unbearable pain.
After a lot of hydrotherapy, physiotherapy and medications l was starting to manage my ankylosing spondylitis
I was medically retired from local government in 1999 as unfit for work. Since then l have not improved, l have deteriorated. I live a life of pain and discomfort but struggle on the best l can. When you live with a chronic condition and constant pain you will find your own coping skills to manage the best you can. I will give you an example of my daily life living with ankylosing spondylitis.
Starting my day
I sit on the edge of my bed for about 5 to 10 minutes. The first thing I do is reach for my medications and water and take my medications (I always keep them in my bedside cabinet in case I cannot get up because of my pain and mobility).
When I first put any weight onto my feet the pain is unbearable but l know l have start to get mobile because this will also help with the stiffness that l am feeling. I always feel tired before my day starts because fatigue plays a huge part in ankylosing spondylitis along with me also having sleep apnoea.
l stand and do one of my stretches that l have been taught by a physiotherapist. l have now been up at least 30 minutes and am still struggling with my mobility because of pain, stiffness and discomfort, l also feel so tired because I have only managed about 4 hours sleep through the night.
My son calls in on his way to work and has breakfast with me. He makes the breakfast while l am getting showered. He does this because l do not feel safe in the shower in the house alone.
By the time l have had my breakfast and got dressed l need to do some more stretching exercises to loosen my joints up. I then start to do the everyday things that we have to do running a home, make the bed or beds if my son has stayed because l was not having a good day the day before. I have to plan prepare and prioritise what l need to do day by day.