Posted in Personal Perspective on 22nd Jan 2015
I contracted meningococcal septicaemia in 2007 when I was 25, and as a result had both lower legs and all the fingers on my right hand amputated, plus I have epilepsy. I am a member of international charity Meningitis Research Foundation and have been involved in their campaigning to implement a new vaccine against Meningitis B, the strain of the disease I contracted.
Before I became ill I worked with horses, did part-time office work and evening pub work. I was always active, fit and healthy. Meningitis was a disease I had heard of but I had no idea what it could actually do to you and thought it only affected babies and young children. I became ill on a Friday evening whilst working at the pub. I came home, went to bed and don’t remember anything else. It was only because my parents came to find me and knew there was something wrong that I am still here today. I was rushed to the Kent and Sussex Hospital in Tunbridge Wells and spent three weeks in intensive care before I was stable enough to be moved to Queen Victoria Hospital in East Grinstead. Over the following weeks I had a number of operations to perform amputations to my legs and multiple skin grafts. I don’t remember any of this in detail; I mostly just remember pain. About 50% of me was affected by septicaemia, so the other half needed to be used as donor sites for skin grafts, leaving nearly all of me covered in dressings.
I left East Grinstead three months later and was taken to Queen Mary’s Hospital (a specialist rehabilitation unit for amputees) in Roehampton where I stayed for a further three months. I was fitted with limbs, learnt to walk and learnt to cope with the amputations of my right fingers. I had to re-learn simple tasks such as writing, washing, dressing and cooking. There were so many things I used to take for granted that I suddenly found I needed help doing. I left Roehampton in May walking with two sticks and was thrilled! I thought from there on in it would be plain sailing but needless to say I was wrong.
My epilepsy (known as myoclonic jerks) caused small muscle twitches which completely upset my balance and were especially bad on uneven ground, in crowded places, or in the dark. I couldn’t ever talk and walk at the same time. Until my Neurologist was able to get these under control, this really hindered my progress. As I started walking more the skin on my stumps began breaking down, so, having only been up and about for a month, I was confined back to a wheelchair and in the September I had a further operation on both stumps to shorten the bone even further. These setbacks were the hardest time for me as I felt like I wasn’t making any progress. Some days I didn’t want to get up and could very easily have become depressed. I owe a huge thank you to my mum who risked my wrath and came and dragged me out of bed!
It wasn’t until Christmas 2008 that I was finally fitted with another pair of legs, over a year after my initial illness. By then I was desperate to start taking control of as much of my life as possible so I moved into a flat of my own. Though not specifically adapted, we had to look hard for somewhere suitable, on the ground floor and with wheelchair access just in case. I had now completed all the obvious short-term goals and the next stage of my recovery was very much down to me.
Fitness was a big problem. I found I got very little exercise and soon became fatter and less fit, which is a common problem for amputees. Walking became more exhausting and the weight gain affected the fit of the prostheses. In 2010 I started riding again having had a hand prosthesis designed and made so I could hold the rein. Horse-riding is a fantastic form of exercise and something I enjoy whilst feeling almost able-bodied. I am now hoping to compete in the Paralympics at Rio in 2016. I have also learnt to ski and to run on prosthetic blades.
Finding a job was difficult as I struggled getting anywhere. Due to my epilepsy, I no longer had a driving licence and I hated having to rely on other people for lifts and found public transport very difficult to use. Then there were access issues and the fact I still needed to attend regular hospital appointments for which I would need time off.
As well as this I was limited to what I could do. The myoclonic jerks from my epilepsy meant I was unable to use a computer as the screen made these significantly worse. Fortunately, as these got better, I was offered a job doing data entry from home, albeit slowly with one hand!
Luckily I have now found more fulfilling roles and in 2012 I worked as a reporter for Channel 4 on the Paralympics and words cannot describe what a fantastic experience this was.
These days the main criteria for work is that it will fit round my riding training. I still do some TV reporting which has also led to motivational speaking and live event announcing. I also work with other amputees doing casualty simulation to help with the training of both the military and emergency services.
Meningitis and septicaemia is not a disease where one day you are ill and the next you are fine. I am back living an exciting and fulfilling life, yet I am also still recovering and will go on doing so for many years to come. The journey I have been through, and the people I have met, has taught me a lot about myself. There is always someone worse off. I have realised what is important to me and appreciate how lucky I am in so many ways. Things are often inconvenient or difficult; I can never do my jewellery up, chopping an onion takes twice as long and I haven’t yet found a pair of jeans I like. But I am still just a normal person.
ACNR 2015;14(6);22. Online 22/01/15Download this Article