I began writing this by thinking about how my life has changed since I became ill, and my first reaction was that it hasn't. I have had both lower legs and all the fingers on my right hand amputated, and I have epilepsy. However, I live on my own and manage just like anyone else. I have a job, meet up with friends, have various hobbies and, now I have my license back, drive myself wherever I want to go. Of course my life has changed a great deal, I have simply learned to deal with these changes better.
Before I became ill I worked with horses, did part time office work and evening pub work. I was always active, fit and healthy. I became ill on a Friday while working at the pub. I came home and went to bed and don't remember anything else. By morning I could not walk unassisted and it was only because my parents came to find me and knew there was something wrong that I am here today.
I was rushed to hospital and, having spent 20 minutes in cardiac arrest, everyone's first main worry was possible brain damage. I can't even begin to imagine the worry my family must have felt. I was in intensive care for three weeks before I was stable enough to be moved to Queen Victoria Hospital in East Grinstead where, over the following few weeks, I had a number of operations to perform the amputations and multiple skin grafts.
I don't remember any of this time in detail – in fact I have clearer memories of some of my hallucinations. I was convinced there was a caravan with little men living in the corner of my room, though apparently one day I did admit it probably wasn't real, but that the peacock definitely was!
As I slowly became more conscious for longer periods I mostly just remember pain. As about 50% of what was left of me was affected by the septicaemia, the other half needed to be used as donor sites for the skin grafts, leaving nearly all of me covered in dressings. The donor sites are significantly more painful than the graft sites. I will always remember screaming in agony during dressing changes.
Once out of the woods I had to begin the long road to where I am today. As I started to attempt slightly more rigorous physio sessions, we discovered I had developed epilepsy and an increase in stress would cause a fit. I also found I had a stutter, had difficulty remembering words and struggled reading as I could not follow the words on the page from one line to the next.
I left East Grinstead about three months after having become ill and was taken to Queen Mary's Hospital, Roehampton. This has a specialist rehabilitation unit for amputees where I stayed as an inpatient for about another three months. The main focus of my care was the fitting of limbs and learning to walk, but on top of this I had to keep visiting the dressings clinic for the areas of skin graft that had not yet fully healed, see the physio, and see the OT, who helped me with managing the grafted areas to try to minimize long-term scarring. She also helped me relearn simple tasks such as writing, washing and dressing and cooking.
This brings me on to an issue that is often not thought about when adults get meningitis. There were so many things I used to take for granted that I suddenly found I needed help doing. The serious side effects I experienced, for a time, completely took away my independence and I have had to be mentally very strong to regain this. When things are hard and painful it is much easier to become lazy and not do them. I was determined not to let this happen, and I think this has been the most difficult issue I have had to overcome.
I left Roehampton in May walking with two sticks and was thrilled! Straight away I was out and about enjoying my freedom but found my new walking very unsatisfactory. The epilepsy I have is an unusual type known as myoclonic jerks. These are small muscle twitches but I found they completely upset my balance. They were especially bad on uneven ground, in crowded places, or in the dark. I couldn’t talk and walk at the same time. Until my neurologist was able to get these under control, they held up my progress.
I also discovered that, as soon as I started walking more, I had a lot of trouble with the skin on my stumps breaking down. So, having only been up and about for one month, I was confined back to my wheelchair hoping these sores would heal. Sadly, this was not to be, so in September I had to have a further operation on both stumps to shorten the bone even more. I then had to wait for them to heal again before I was fitted with another pair of legs just before Christmas 2008, over a year after the initial illness.
These six months were the hardest time as I was sat at home feeling like I wasn’t making any progress. Some days I didn’t want to get up as I knew I was only going to sit on the sofa instead. I could have very easily become depressed so I owe a huge thank you to my mum who would risk my wrath and come and kick me out of bed!
During all this time I was stuck in my wheelchair. I personally think everyone should have to spend at least a day in a chair to experience how difficult life is. There are obvious physical issues, but also you have to deal with the assumptions people make. On many occasions I would begin a conversation and the answer would be directed to the person standing next to me. It was also very annoying when people thought they were being helpful and started pushing me somewhere without asking. On top of this I, along with many amputees, suffer from severe back pain. The wheelchair was the most uncomfortable place to be and yet without it I had no way of getting around. I used to have to take high doses of painkillers which often left me completely spaced out and nauseous.
So finally I had a pair of legs I could get around on, even if I was still a bit wobbly! By now I was desperate to start taking control of as much of my life as possible, but this was never going to happen while living with my parents, as it was too easy to let them spoil me, so I moved into a flat of my own.
Firstly, I had to get a job. There were many reasons why this was difficult. Most obviously I struggled getting anywhere. Due to my epilepsy, I no longer had a driving licence and found public transport very difficult to use. More often than not it didn’t go where I wanted to go, especially as I don’t live in a city and could not walk very far at either end. Then there were access issues and the fact I still needed regular hospital appointments for which I would need time off.
On top of this I was limited as to what functions I could perform. Initially, due to the myoclonic jerks, I was unable to use a computer as the screen made these significantly worse. Fortunately, as these got better, I was lucky to be offered a job doing data entry from home, albeit slowly with one hand!
However, there are tasks I would struggle with, such as taking notes, as my writing is very slow. More significantly though, I now have a large employment gap in my CV because of the long time I spent in hospital and recovering. Two years on I am still doing the same data entry job but I would love to be able to get myself a more stimulating one and go out to work so I would see more people on a daily basis.
I also found I got very little exercise and soon became fatter and less fit. Walking became more exhausting and it affected the fit of the prostheses. Luckily I enjoy playing sport. About a year ago I started riding again, but firstly I had to design and have a hand prosthesis made so I could hold the rein.
I still believe anything is possible but everything I have tried so far has definitely been harder. I have also taken up skiing and running. However, I always seem to need extra equipment so can’t just get up and go like everyone else. This makes everything more longwinded and expensive.
I have met a lot of other amputees through a company called Amputees in Action. We do casualty simulation to help train the emergency services and armed forces. Joking with them about similar problems we encounter has helped me feel more at home with the way I am. Although our amputations have been caused in different ways, many things we have had to deal with have been similar. A recurring theme is the strain on relationships and many of them are now divorced.
Meningitis does not only affect the victim of the disease, but the people around them. At 25 I could easily have had children who would suddenly have had a mother unable to care for them. It goes without saying that it was an extremely difficult time for everyone who knew me. My parents admit to being more protective and always say how proud they are – though I cringe every time they do, so have banned this word! My mum also says she will forever feel guilty for not picking up on what was wrong sooner.
As for the future, I am determined not to let anything stand in my way and my goals include paradressage competitions and I have always joked about running a marathon! As I get older I will be more likely to experience other health issues, physical ones due to the active lifestyle I am leading on my prosthetic limbs, and internal ones due to the significant medication I take each day. Life will also get mentally more difficult when I can no longer do the things I want to do.
On the other hand, the journey I have been through, and many of the people I have met, have taught me a lot about myself. There is always someone worse off. I know more about what is important to me and appreciate how lucky I am in so many other ways. I think there will always be sadness when I see people doing things I used to do, but I will always be thankful for all the experiences I had before and the new ones this has given me. What I find most annoying is none of the things I’ve mentioned above, but simply that I will never be ‘the same’ as everyone else again. When most people meet me, all they see is a disabled person and therefore assume I am less capable than they are. Until people get to know me I am treated differently.
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.