I first became ill with M.E. at 12 years old. I was severely ill for 3 years before experiencing about 2 years of recovery. Aged 18 I suffered relapse after relapse; every time I saw some progress back to how ‘well’ I’d become in those previous 2 years something would set me back. And things spiralled with a massive relapse aged 20.
In a way I don’t feel like I’ve had a chance to find out who I am. Pre-illness I was an energetic school kid who’d just started secondary school, for the first time I wasn’t the subject of school bullies, I enjoyed learning, had found I really liked basketball, always had my head stuck in a book and was walking the 20 minute walk to school and back each day.
During my teenage years I struggled to complete my education, I was urged to do 5 GCSEs but despite my best efforts this wasn’t possible and I had to reduce it first to the 3 core subjects, then to just English, and finally to just English Language. The workload was just too much, taking all my energy.
In that time I never lost my love of books though. I may not have been able to read much and the little I did do tended to be for my GCSE studies but it was a part of the old me which had survived this illness.
But because all my energy was taken up with studying I never experienced the ‘normal’ teenage things. To this day there is so much I’ve never done and I can’t help but wonder if perhaps this has shaped who I am today.
I’m still a bookworm when I’m able to read a book. I still love learning. I enjoy crafts of all kinds. Yet that is about all I can say about myself. I’m always finding the positives in things and the humour in the situation I find myself in.
It seems in a way nothing has really changed since I was 12, I still love all the things I can still do that I did back then. The rest has been shaped by being poorly. Life itself hasn’t really changed for me since I was 12; I’m still living with my parents, still require them to help me a lot more than they would a healthy person my age, still enjoy kids films (sometimes they are the only kind of film I can concentrate enough on to follow the plot), still want a hug when feeling really poorly.
Sometimes I can’t help but wonder what I would be like if I hadn’t fallen ill, would I have done all the things I dreamed of doing? Achieved all the things I wanted to do? I still grieve for all the experiences I’ve missed out on, the time I’ll never get back. And I question who I really am, because there are times when I feel that I’m not much more than my illness, simply because it limits almost every aspect of my life in some way. And it takes all I’ve got in me to try and be all the things I want to be.