Back with more M.E Awareness Week blogging! Had a bit of a rough week symptom wise to had to slow down my campaign, but here is the next chunk of my story :) I actually have great difficulty recalling a lot of the events of this year, whether I've blocked them out or all my days just merged together I'm not sure. For example, I know there was a football World Cup this year but can't remember any of it ;)
2006 - Deterioration and Diagnosis
I returned to school in January, doing just two hours a day on a part time timetable that I had worked with the school to arrange. After all, everyone presumed I was on the way to recovery from the glandular fever that had struck me down. I signed myself in and out of the office and was told to visit the nurse should I feel ill and I could go home. For a while I was managing fine, but it soon became clear that I was beginning to struggle. I had months of work to catch up on, coursework to complete as well as the homework being set at the time. As well as this, I was catching every bug going, colds and sore throats would wipe me out for weeks, and I would end up spending more and more time off school. Eventually one bug would set me back so much that I wouldn’t return for the rest of the year.
We knew that things weren’t right, I was still so drained of energy and so early on in this realisation had we returned to the G. P to express our concerns. In the end, I must have had four glandular fever tests that came back negative, and although the test isn’t entirely accurate, it was becoming clear that it may be more than glandular fever at work. This was the first time M.E was mentioned. I was referred to a consultant at the local hospital, a paediatrician. The wait to see them was long, and in that wait I had gone from attending part time school to not attending at all because my health had deteriorated.
When I finally got that appointment it was daunting and scary. I would have the huge batch of blood tests that all patients with M.E become used to, to rule out any other causes of the symptoms I was struggling with. When they came back clear I was diagnosed with M.E/CFS. The diagnosis is both a relief and a curse. I remember feeling so relieved to have a name for what I was feeling, and when provided with information about the illness, everything I read fitted my symptoms. But there was no treatment and no cure. I would have check-ups every other month and look at ways to gradually improve the amount I could manage, but no more than that.
Later that year, I would attempt once more to return to school. Education was always important to me and I didn’t want to miss any more work but in the end I didn’t even make it past the first day of Year 11. The rest of the year had spent two weeks on work experience, something which I was never to do, and so when they returned to school so did I. I went in for registration, and for one English lesson. The next day I woke up with a chest infection which was to drain me of all my energy and set me back once more. I didn’t go back that year. A few months later the school organised a home tutor who I would see for four hours a week.
The education side of missing school was taken care of for me, but what nobody factors in is the social side. At aged fifteen, all you want to do is see your friends and that was taken away from me by my health. The hardest part though was the lack of effort anyone seemed to put in to keeping in touch with me. I had one friend who would ring me with the gossip, but it seemed to the majority that I was very much out of sight, out of mind.
Also, the first M.E video I posted by a girl called Daisy has now reached 3000+ views which in incredible :D we managed to get it retweeted by Harry Potter stars, Oliver Phelps, Matt Lewis and the wonderful Chris Rankin who has been super sweet with his support for the cause :) and my video has topped 200, which is incredible given it's my first ever awareness vid.
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