• Robpal - Remembering Before

    I was diagnosed with M.E. in 1990 only a couple of months after showing symptoms, thanks to my parents obvious concern and my Mum's research skills. The diagnosis came from a homeopathic doctor, as my GP thought I was making it up to spend more time at home because my Dad was a pilot and would often be away for over a week. I was 11 years old and had just started high school after moving to the area only 6 months earlier.

    School was a huge challenge. Just as I'd started to make friends, I was away for days at a time and eventually was home schooled for one or two hours a week. Nobody understood, the school didn't have a clue how to deal with it and my home tutor had to fight with them for three years about every little detail, before she was eventually replaced by another tutor when I had to study for some GCSE's.

    My symptoms were mainly made up of light sensitivity, noise sensitivity, dizziness, fatigue, headaches, 'brain fog', muscle aches in limbs and weakness. However, there seemed to be a significant improvement at the weather got warmer, to the point where I used to say that I was solar powered. This seasonal cycle allowed me to return to school shortly after Easter each year and also for a few weeks after the summer break. Unfortunately the variance in my attendance and activity levels made it extremely difficult for people to understand what I was like when they didn't see me. I remember there being many occasions when I thought I'd be well enough to go on a school trip to the theatre or something else, but each time my energy failed me and I had to pull out at the last minute. Surely this would be enough to convince people I wasn't faking it to skip lessons.

    During the first few years of my illness, my parents continued their research and we tried a large variety of different treatments. Homeopathic remedies were relatively effective but only for helping control or lessen some of the symptoms but far from curing anything. There was one multi-vitamain tablet that caused a huge fight between my Dad and I. These tablets were quite large and had to be swallowed in one. They smelled quite revolting too. Being only 11 years old, I'd never had to take tablets this way before and the thought of sticking that thing in my mouth scared me so much, but my Dad just couldn't understand my problem and while we trying to think of a way for me to take it by hiding the tablet in a segment of clementine, my Dad had enough of waiting and wrestled me to the floor and tried to shove it in my mouth. I understand now how frustrating it must have been for him to watch me refuse to take a tablet that could possibly help me. The next thing we tried was an evening primrose tablet called Efamol. This was also to be swallowed, but came up with a way of doing it that was acceptable, not to mention that fact that the tablets were half the size of those multi-vitamains. I used t take them with a spoonful of yoghurt to make it slip down without really noticing. I think I must have taken those for at least two or three years at least once a day. A very large expense for my parents that I didn't realise until I was much older. I don't remember much of the other treatments we tried or looked at, except the one that I feel made almost the biggest difference for me. It was a device called a Medigen, and it used frequencies to balance out missing ones recorded in brain activity. The head office for this was based about an hour away from where we lived, so another road trip and more expense was incurred to try this cutting edge treatment. It was originally developed for migraines, however was found to help M.E. sufferers too. I wore this little device around my neck for several years and had the frequencies monitored and updated regularly, at even more cost. But it did seemed to make a difference, although I'd already left school by then, with three GCSE's (it was all they would let me take). It did help me get through a year at college though and also find my first full time job, that I subsequently left seven months later due to an unforeseen relapse.

    Fortunately this relapse didn't send me completely back to the worst days I had in the first few years of my illness, and I had been able to pass my driving test after a year of sporadic lessons. The independence of being able to drive allowed me to do some self employed work as a website designer and general computer geek. This could be fitted around my remaining symptoms so that it didn't impact my work, although it wasn't consistent and I spent many months arguing with the job centre about whether I was capable to work and wether I could claim job seekers allowance or income support.

    In the middle of the year 2000, nearly ten years after my original diagnosis, we heard of another potential treatment. This was based around allergies, so we made appointments to see two very different people who advertised their skills in determining any allergies. The first "specialist" just didn't seem very genuine as he made me put my finger on the top of about thirty bottles of different liquids and somehow measuring...something. The second person was a proper nutritionist. She seemed more real and gave me some normal things to do to find out if there was a wheat a dairy intolerance lurking within. After two weeks of no wheat or dairy and couple of simple tests, it was determined that I had a dairy allergy that was causing a candida infection which was preventing my recovery from M.E. So I immediately began a very strict dairy free diet. This was extremely difficult as I was a huge dairy eater before hand, regularly drinking pints of full fat milk, eating cheese on toast, pizza, ice cream, to name of few. But over only a couple of months, the change was quite obvious. My energy levels had increased and other symptoms had ebbed away to the point I considered myself to be 90% recovered.

    In April 2001, I was able to get a part time job with an insurance company and was able to maintain my health to being able to take on a full time position there about 6 months later. Although I stayed off dairy, I considered myself fully recovered. Still being wary of my activity, I started to feel like a had a lot of catching up to do. I'd missed out on a huge part of a normal childhood and plethora of teenage exploits, so my focus was on making the most of the life I had and taking every opportunity that came my way. This helped me reconnect with a passion I had for performing and that summer I was able to perform in a variety show at the London Palladium, which was the start of another journey I'm still on now.

    Since my recovery, I have told almost nobody about my illness. I think my reasons for this are two fold. Firstly, I don't want anyone to pity me or feel sorry for me, that part of my life is over and I've drawn a line under it. Secondly, it upsets me to think back to what it was like, the things I've been though and the things I missed out on. Only now, about ten and a half years later, do I feel like I can once again talk about it and tell people about what I've been through, because I've managed to do so much since then to make up for lost time. I may be 33 in a few months, but by June I should a have a degree in Music and well on the way to a career in an industry I'm passionate about. This might not be the life I would've chosen for myself when I was 10 years old, but I'm happy with the person that my experiences have turned me into, so I wouldn't change a thing.

    I hope that my story will give hope to many of you who are still suffering. I'm thankful for my parents amazing and continued support, as well as other family and friends who've been there throughout it all. It's these people more than anything else that gave me the strength to carry on fighting every day.

    Keep smiling,