Overcoming the challenges of getting around with a rheumatic or musculoskeletal diseaseI have lost count of the times someone has said to me ‘I could do with one of those electric wheelchairs’ as they walk seemingly without difficulty. My response depending on my mood at the time is usually along the lines of ‘you can have my wheelchair, if I can have your legs’.
Sure they are trying to have a laugh when they say these things and I like a joke more than anybody else as people will testify, but that doesn’t stop it being annoying. Little do they realise the circumstances that have led me to my four wheeled friend. I am in a wheelchair out of necessity and not out of choice. I don’t enjoy being stared at and overhearing loud whispers of ‘look at that little man’. Nowadays I have learnt to deal with it in a different and more comfortable way and get on with my own life.
Since being diagnosed with Systemic Onset Juvenile Idiopathic Arthritis in 1985 aged two I have continuously battled with the condition which has led me to overcoming and adapting to new ways of getting around. At just 4 foot 5 inches tall and with over 30 operations to my name with every scar telling a different story, the condition has been extremely aggressive and the damage caused throughout my body has been relentless.
Having a full time disability is tiring as my body is constantly attacking itself, I will never forget when my surgeon said to me, “you are unbelievably good at dissolving your own bone”. This has led to the total replacement of both knees and hips as a teenager because of eroded and exceptionally painful joints. In 2011 alone I have had a hip revision due to dislocation and my ankle fused and re-aligned due to severe damage and deformity of the joint. Other major surgery includes spinal fusion and removal of an infected large bowel.
With a whole cocktail of medications and treatments to speak of, plus endless visits to the hospital for hydrotherapy and outpatient appointments the hardest question to answer is how do you cope or overcome living with your condition?
A strong positive attitude, a sense of humour with the ability to laugh in a self accepting way is a necessity for me. Getting out of bed in the morning with terrible pain is the hardest thing to do but it’s important to have the self motivation and the dynamism for life to make that seemingly giant leap. It’s only pain and I find it will only get worse the less you do and more you think about it, although admittedly this is easier said than done!
Whilst I have never been the most active and athletic person in the world, I have always strove to maintain the best mobility I can which consisted of varied short distance walking styles around my home, using my star lift to go to my room upstairs and using my electric wheelchair for outdoor adventures.
However in May 2009 I had a fall and broke my right femur and subsequently spent a bed ridden nine months on traction and a total of 355 days in hospital. This provided me with little benefit, the bones have never healed and I now live with a broken leg which causes me immense pain and discomfort.
Every waking minute is now spent on four wheels in my electric wheelchair and many alterations have been made to accommodate my decline in mobility although the house I live in with my parents has always been modified to my changing needs. I have said an emotional farewell to the stair lift and I now live downstairs after an extension was built with a fully accessible bathroom downstairs enabling me to manage independently.
One of my best achievements was learning to drive over seven years ago. I am the proud owner of a fully adapted car which gives me my freedom and independence to go anywhere and do anything. Together with my wheelchair these modes of transport take me to work, to see friends, to hospital appointments and to my hobbies which mainly involve sport.
Voluntary work is a big interest in terms of raising awareness for young people with health conditions and using my experiences to give something back to improve services. I also undertake campaign work for various Arthritis charities and I am part of numerous patient groups within hospitals where I attend regular meetings.
Despite missing a lot of time from my education, I managed to achieve my grades and I obtained my degree at university. Since leaving university I have had some excellent full time jobs but unfortunately I can now only work part time due to pain and tiredness that sets in, although even my part time work has been interrupted this year because of various health issues and two weekly trips to the hospital.
As a sports fanatic I regularly go and watch sport including football and cricket but my biggest enjoyment is playing Powerchair football. Playing competitive sport has always been a dream rather than reality due to my upper and lower body being so badly damaged, but Powerchair football enables me to do this on a level that is comfortable for me. Holidays aren’t a frequent occurrence for me due to complex travel and accommodation needs, but my car enables me to go a certain distance. Friends over the years have been invaluable and a night out or night in with them is a common event the same as anybody else.
The impact and the changes since my fall a few years ago has been dramatic with my mobility at present being no more than a few supported steps. Remembering what I used to be able to do in terms of walking short distances, makes not walking at all now more frustrating. Although I found it very difficult at first to adjust to a huge difference in lifestyle I have learnt to accept my new way of life.
Although it’s taken a while I now do most things I did before my fall. The difference is I do them in a different way with even the simplest of tasks taking a lot longer. Although there have many changes over the years, one feature does remain as consistent as ever and that’s the magnificent support I get from my parents and sisters, I wouldn’t be half the person I am today without their endless support.
Even though my condition is currently controlled, I have a lot of long term damage which will remain even if the Arthritis goes tomorrow. It is highly likely that I will live the rest of my life in a wheelchair and I have no fears in saying that. I am of the mindset that life must be lived no matter how by embracing, adapting to changes and moving forward.
The truth is I probably wouldn’t swap my wheelchair for the average person’s legs as I am who I am and that is largely born out of my experiences with my Arthritis. I have come to realise over the years that although I am in a wheelchair it enables me to be an independent person, my wheels are my legs.
David wrote this essay for the Edgar Stene Prize 2012, an annual prize on a specified subject for people with Arthritis or another muscuskeletal condition. The essay was chosen to represent the UK in the European final. See David share his experiences for our sections on arthritis and long term health conditions.