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Last updated:14th April 2016

My Day with AS

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.

Midday

It is now lunch time and the unbearable pain is coming back so more medications are taken before I prepare my lunch. My fatigue is so great that the strength of the medication gives me no choice than to lay down for a short sleep. If I have had to go out I would be longing to get back as l am exhausted.

I have a stair lift indoors as l have already fallen down stairs resulting in my shoulder injury. After doing a few more chores around the house it is coming up to late afternoon and it's time to prepare my evening meal.

Along with pain and discomfort from my ankylosing spondylitis l have the pain from osteoarthritis which mainly affects my hands and left knee. My feet also cause me considerable pain. I also have to contend with pain and unpleasant symptoms of irritable bowel syndrome. I only hope l am not going to get another bout of iritis or plantar fasciitis.

Evening

My day is nearly coming to a end and l feel drained, tired, in pain and discomfort and stressed because l know l am not going to get a good night's sleep.

More about me

Yes, l am on anti TNF but l still live with pain everyday as there is no cure at present for ankylosing spondylitis.

I have also had spinal correction surgery (osteotomy) in 2009. This is also not a cure for ankylosing spondylitis but has helped me, along with the many medications I take and the daily exercise regime l do to live with the pain on a daily basis

I had an arthroscopy to my left knee 17 years ago and am considering having another one to delay having to have my left knee replaced.

I also have considerable pain and restricted movement to my left shoulder due to very bad injury from accident on stairs and have got to eventually have a shoulder replacement.

You may be asking yourself why do l not go ahead and have the knee replacement and shoulder replacement done sooner than later? My reasons are that l could end up with less movement in my left arm than l have now and my main reason is that to anaesthetise me comes with risks and complications because of my posture and obstruction to my airways.

It is, perhaps, not surprising that l have been treated for a mental breakdown and depression several times in the past living with my ankylosing spondylitis.
 


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