We're a big fan of the Get Yourself Active initiative, which is a partnership led by Disability Rights UK, funded by Sport England and delivered by Leicester Centre for Integrated Living, Cheshire Centre for Independent Living, Inspire Peterborough, Disability Equality North West, Active Independence and Disability Sheffield Centre for Independent Living. Get Yourself Active aims to work with the health, social care and sports sectors to develop better opportunities for disabled people to get active.
The initiative publishes a newsletter and has a regular feature on people's personal experience of disability and being active, which you can find here. We're delighted to feature one of those stories - Danny's - as a guest blog. Thanks Danny, and Kirsty Mulvey of Disability Rights UK, for permission to reproduce his story. To find out more about the Get Yourself Active initiative click here.
I wasn’t always a sporty person but when I was fourteen I took part in school rugby tournaments. Rugby led me to weight training which quickly took over and became my passion. I realised quickly that it was because the results were all down to me. I used the gym religiously with my training partner, and even came in third in an amateur body building contest in 1995. I had high hopes of further progression having found my ‘thing’; sadly, it wasn’t to be.
My life changed between 1995 and 2013 when I experienced some mini strokes and kidney damage. I was diagnosed with a condition called Antiphospholipid Syndrome (Hughes Syndrome/APS or ‘sticky blood’) which is an autoimmune condition that causes the blood to clot. This affected my fine motor coordination, particularly in my hands and it caused me to temporarily lose the ability to talk.
After a long stay in hospital and rehab I started to manage my condition. I slowly got back to a new normal although my adjustment to my impairments was not without some difficulties. I naively thought I could pick up where I left off with the gym, but soon found out I would need to relearn some old habits because of my loss of coordination and other issues.
I was initially in denial when I thought about my attitude and ability to take part in sport. I felt I could just get past my condition and go back where I left off. I decided I’d try something different instead, so learned martial arts – not the smartest move when on blood thinners.
During the Christmas period of 2012 I came down with what I believed to be a bug/flu-type illness. I collapsed on my landing and next thing I remember I was in the ambulance on the way to the hospital. The next two-three months were a blur, bouncing from neurological ward to a high dependency, intensive care unit. My APS had become an extremely rare catastrophic type (CAPS) which means several organs are directly impacted in very quick succession.
I lost my balance, coordination and speech and I still suffer from this today. My balance was so bad I couldn’t sit on a bed initially without toppling over or falling off. I felt very frustrated as to why I couldn’t now function as I did.
Day to day things felt impossible and were often terrifying. I had to learn the things I’d taken for granted most of my life all over again.
I was pleased to learn my physiotherapy could start after weeks on the neurological ward – finally I’ll be doing something physical again! Not so. My early rehab consisted of attempting to pass a sponge rugby ball around my waist back and forth… easy! Or so I thought.
I was very fortunate to go to a brain injury rehab unit to relearn some of these functions. I often say the hospital saved my life, but the rehab unit gave me a life worth living. I felt I owed it to the staff and myself to achieve everything I could there. I cried when I met the rehab consultant begging him to give me a chance as I didn’t want to live trapped how I was.
I was sure I’d just go straight back into judo, as it gives me focus and an aim. I even did a group talk on judo at the rehab unit as my personal project exercise. The reality was however that I couldn’t sit, stand, walk or do anything particularly coordinated, just small things.
I wanted to get back into physical activity and sport because I always felt throughout that it wasn’t my time to go, that I had things I wanted to do. I felt cheated by my situation, not achieving what I felt I was capable of.
My competitive nature had stayed with me throughout and I knew early on that my ‘job’ was now my recovery and this was an investment in myself. Progress was slow, but I did what I was taught and asked to do – and more – because I knew I’d only get out what I put in.
At the moment I do a balance of physical activities. I initially got back into swimming because I felt safe in the water and couldn’t fall over and hurt myself there. I progressed to attending the local council gym and using the exercise bike there. I get support from a brilliant support worker who helps me set and achieve my goals. One of those goals was to take part in a studio cycling (spinning) class within a few months – which I achieved and am very pleased with.
I am back regularly in the gym now and am aware of which exercises I can do now when switching between work stations. I also practice Tai Chi which I now hugely enjoy.
On discharge I managed to find a fantastic local teacher for one-to-one lessons who also had experience of brain injury. I still attend now and the progress it has made to my day-to-day life is massive. I can now stand upright without leaning with my back against the wall and I’m no longer experiencing violent twitches. I’ve learned so much about myself and have become much more self-aware.
These three activities, Tai Chi, gym and spinning, make me ‘tick’ and I love them equally. I’ve learned about and appreciate the balance in what I now do.
My advice to other people who may find themselves in similar situation is that you should find and do something you enjoy first and foremost, or you won’t stick with it. Being consistent is the key, be it healthy eating or exercise. So many people start something because they read or are told it’s good, often never enjoying it then quickly dropping out. If you enjoy it, you stand a chance of sticking with it.
Being physically active has given me back a life worth living. During severe illness I complained all the time that I’d looked after myself, ate well, kept fit yet this had happened so what was the point? I remember a nurse, probably sick of my complaining, simply said to me, “Have you ever thought you might not still be here if you hadn’t?”
I stopped there and then. The ‘whoa’ hit me and I just got on with it.
I’d tell anyone to take part in something they enjoy doing. If you are lonely maybe join a team or club. Sport has a way of boosting people up, it’s often social, and if you stick with whatever it is long enough you will learn something about yourself. I know. I have.