Edgar Stene Prize 2012 essay

Hi all, hope everyone is well.  Please find below my UK winning essay I wrote for the Edgar Stene Prize – which is an annual prize on a specified subject for people with Arthritis or another muscuskeletal condition.  My essay will now represent the UK in the European final in a couple of months.  Happy reading, let me know your thoughts. David 

“Overcoming the challenges of getting around with a rheumatic or musculoskeletal disease”

I 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.

Five Ways to Well being

In 2008, The New Economics Foundation (nef) was commissioned by the UK Government’s Foresight Project on Mental Capital and Well-being to review the inter-disciplinary work of over 400 scientists from across the world. The aim was to identify a set of evidence-based actions to improve well-being, which individuals would be encouraged to build into their daily lives.

As an illustration of how Government action can be explicitly directed towards improving well-being, this page briefly sets out the five evidence-based ways to well-being and the sorts of policy interventions which could help to enable them.

Connect

Connect with the people around you. With family, friends, colleagues and neighbors. At home, work, school or in your local community. Think of these as the corner of your life and invest time in developing them. Building these connections will support and enrich you every day.

Be active

Go for a walk or a run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and one that suits your level of mobility and fitness.

Exercise has been shown to increase mood and has been used successfully to lower rates of depression and anxiety. Being active also develops the motor skills of children and protects against cognitive decline in the elderly. Yet for the first time in history more of the world’s population live in urban than non-urban environments. Through urban design and transport policy, governments influence the way we navigate through our neighbourhoods and towns. To improve our well-being, policies could support more green space to encourage exercise and play and prioritise cycling and walking over car use.

Take notice

Be curious. Catch sight of the beautiful. Remark on the usual. Notice the changing seasons. Savour the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.

In the US, research has shown that practicing awareness of sensations, thoughts and feelings can improve both the knowledge we have about ourselves and our well-being for several years. But the twenty-first century’s never-ending flow of messages from companies advertising products and services leaves little opportunity to savour or reflect on our experiences. Policy that incorporates emotional awareness training and media education into universal education provision may better equip individuals to navigate their way through the information super-highway with their well-being intact; regulation to create advertising-free spaces could further improve well-being outcomes.

Keep learning

Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favourite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.

Learning encourages social interaction and increases self-esteem and feelings of competency. Behaviour directed by personal goals to achieve something new has been shown to increase reported life satisfaction. While there is often a much greater policy emphasis on learning in the early years of life, psychological research suggests it is a critical aspect of day-to-day living for all age groups. Therefore, policies that encourage learning, even in the elderly, will enable individuals to develop new skills, strengthen social networks and feel more able to deal with life’s challenges.

Give

Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in. Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and creates connections with the people around you.

Studies in neuroscience have shown that cooperative behaviour activates reward areas of the brain, suggesting we are hard wired to enjoy helping one another. Individuals actively engaged in their communities report higher well-being and their help and gestures have knock-on effects for others. But it is not simply about a one-way transaction of giving. Research by nef shows that building reciprocity and mutual exchange – through giving and receiving – is the simplest and most fundamental way of building trust between people and creating positive social relationships and resilient communities. Governments can choose to invest more in ‘the core economy’: the family, neighbourhood and community which, together, act as the operating system of society. , Policies that provide accessible, enjoyable and rewarding ways of participation and exchange will enable more individuals to take part in social and political life.

 

Share your story competition winner

In autumn 2011 we announced that we were offering £50 worth of paintball vouchers to the person who makes the most creative contribution to Myyouthhealthtalk whilst sharing an experience of health, mental health or a challenging experience.

We’re excited to announce that the winner is Mazlupa who made this short film about her experiences of arthritis.