I soon managed to convince the school to allow me to attend half days and continue at home with self study when I felt able to. This method I believe is what kept me going throughout my entire academic career. Now I was armed with doctors letters and 2 very supportive parents who were not frightened of threatening approaching the media, the teachers backed off and were generally very supportive.
Despite only studying part-time I was able to take my A Levels at the same time as the rest of my year group, and indeed, I did extremely well. I got more than enough points to get into university, not that I needed them, as I'd had an unconditional offer from the university of my choice!
I started uni in September 2000 and at first enjoyed the company of the people I lived with. But that all fell by the wayside when they turned out to be the campus drug dealers. We had all sorts of unsavoury characters turning up in the flat at all hours, the noise was terrible and the kitchen was a hell-hole. I managed to contract E-Coli from the sheer nastiness that was the kitchen. That left me weakened and most likely to spend the evenings hiding in my room, unless one of the other girls in the flat wanted to watch EastEnders, when I'd join her in her room for a while.
Every year around November I would experience a burnout of sorts, and would be signed off for a couple of weeks to recuperate. Luckily for me, my course leader had had Chronic Fatigue, and partially understood what I was going through, she was extremely supportive of me continuing to study no matter what got thrown at me. For a while I wanted to give up, but I wouldn't allow it. This was what I had always wanted and I wasn't going to throw it away now. Maybe that delayed my recovery a bit, but just as likely it was what kept me going.
In my 3rd year disaster struck when the exam board decided that ME was no longer a valid excuse for me to use for concessions. They decided it wasn't an actual condition, so my Dad and I went into a meeting with them, with all guns blazing because it very much was considered a valid illness by the WHO and CMO. Once again we threatened them with the media, because they had also lost some of my exam papers and demanded I resit them instead of trying to find them! After the threats of the media they backed down somewhat and agreed to give me extra time if I resat. This I did and got a 2.2 with honours. I can't help but feel it would have been higher if I hadn't have had that to contend with, but at least I had a degree, and it was a better classification than some people I knew!
By now it was 2004, and I spent my time doing very little indeed. Most of that time was spent with my boyfriend, or acting in shows. In my mind I told myself I was still ill and not up to getting a job, yet I was beginning to have a social life and was enjoying that immensely. However, I probably could have done more work than the 1 morning a week I was doing as a support clerk and my parents kept telling me this. They had always been so supportive of my decisions that this brand of tough love knocked me for six, and when my boyfriend began suggesting I started working as well I began to feel like it was the world against me.
The climax of around six months of tension occured at around Christmas/New Year and I started job hunting in January 2005. I still didn't believe that I was up to it, but my Dad pointed out to me that I really wouldn't know for sure until I tried. I had to try, and if I wasn't up to it, then there was no shame in giving up, the important thing was that I tried.
So I gave it a go. By February I had a part-time job, 4 hours a day. I expected to crash spectacularly, and at first it was extremely tough. But then things began to ease a bit. I had to sleep when I got in, but I had the afternoons to myself and was earning myself some money. So I came off benefits. Things started to improve. I began to find I could walk to the bus stop, then I tried walking on to the next one, and the next. Soon I was walking a mile up a steep hill everyday.
As the weather got warmer and I was doing more, I began to miss being at uni. It was now over a year since I graduated, and although I had started an MSc with the Open University, it just wasn't the same. So I began looking into postgraduate courses I could take to continue my goal of working in Psychology, and I found the graduate diploma programme at UEL. I eagerly applied and found out only weeks later that I had been accepted, without interview or anything! I was thrilled. I started in September and couldn't wait!
Things continued to improve for me. In September I quit my job and began university, whilst looking for a better job to better suit my hours. In October I passed my driving test, giving me more freedom than I'd ever had. I got not only 1, but 2 jobs in London, and things really started to pick up. It was so hard at first, working 2 8 hour days a week and attending uni 2 days a week, but it was so rewarding to know that I was on track and finally truly recovering.
My first set of exams went well, and I began starting work on my project. Naturally after all my experiences I was interested in studying the experiences of others with ME, and this is what I am currently working on now. I will be getting my exam results from my second set in just 3 days and I am now considering increasing my hours of work and I'm generally enjoying how my life is going at the moment.
I can't put my finger on what helped me to recover, maybe just achieving things and thus wanting to achieve more spurred me on. I know that my body adapts well to things now, and my immune system is one of the strongest I know. I am now the last to get anything that's going around, if at all. I know what I want out of life now, and I am working towards that. I realised that what made me get up and start doing things again was boredom, I got bored of being ill and was luckily in a position where I could do things if I wanted to. I still have to conserve my energy and rest up some days, but on the whole I am 90% recovered and loving every minute of my life at the moment. Big changes are afoot, but I'm not sure what at the moment.
Shelley, 17th June 2006.
