I’m not sure if it’s a worldwide thing but in the UK this week (May 11th to May 17) is ME Awareness Week so I thought I would try and do an ME related post every day. I’ll also be doing my normal posts today and Friday as I have them partly written so these are extra, I don’t think I could keep up the daily posts I did last week, I’ll run out of topics!
Anyway, as it’s ME Awareness week I’ve got five posts I’m going to do, hopefully they’ll be interesting. ME Awareness Week is all about bringing awareness to ME (the name says it all) and hopefully improve the understanding of the illness as it’s not one you really learn or hear about unless you know someone with it, at least that’s my experience. It’s like you get cancer awareness month and things. I have seen people posting about ME awareness Day but I haven’t heard of that before, maybe it depends on what charity does it because I’ve only really had much involvement with the one.
I thought I’d start off this week with my story about ME, how I was diagnosed and all the fun that went with it, though my story is pretty simple compared to a lot as I was lucky with my GP from the beginning.
It first started when I had my mock GCSEs, the November I was in year 12, I was 15 so just over 10 years ago. I got I’ll with what felt like the flu and ended up missing some of the mocks, I was told it was just a virus and to go back to school when I was ready so I did. I ended up taking my mocks aft everyone else in little rooms and it all seemed fine until two weeks later when I was so I’ll I couldn’t go back to school, I was off until Christmas and couldn’t manage much at all over the holidays, then I was told I’d probably had glandular fever but I’d recover ok.
Going back to school I almost passed out on the first day back so I went home, I didn’t actually go back, apart from the exams I took (and missed 2), until 6th form move up day. I was told it was post viral fatigue and, again, I’d recover, which I did seem to as I managed almost full time until Easter the next year when it hit again. This time it was a lot worse. I had fatigue all the time and my muscles felt like I’d run a cross country course the day before just from getting up and going to the toilet so I didn’t really manage much at all, I think I did ok on the coursework just because I didn’t really do any of the rest of they were doing in lessons. I could hardly get out of bed most days but managed my 2 AS levels (I dropped 3) exams and did ok, I think I only just managed a U on one exam so they weren’t great and the whole things is a bit of a blur, I probably shouldn’t have taken them but I wanted to get at least one A level to show for the two years of work. I think that in the early days I did push myself too much to get into school and do things, that’s one thing I would change about this whole experience; learn to rest and pace earlier on as I don’t think it helped with my recovery.
It was around that summer where my GP said it might be ME, though I had no idea what that was it didn’t sound good. He’d known me since I was born, well technically before as he was mum’s GP as well, so he knew me well enough to know I wasn’t just doing it to skip school. I was referred to the local ME clinic where everything was explained and I was told that I was probably somewhere around 25% on the ability scale of what I could do compared to a ‘normal’ teenager which was a bit of a shock. I had a few appointments after that about pacing and things that could make managing my health easier with an occupational therapist who was very nice and helpful and even went in to visit my school and talk to my teachers about ME. I would say if anyone reading this is in school and has someone who is a healthcare professional who would be able to do this I definitely recommend this, it really helped with getting my teachers to understand that I couldn’t do certain things and might have to stay at home and have contact with them through the phone and email. I ended up doing my A2 level English Lang/lit mainly through email and meetings every so often with my tutor but I think that last year I only managed to make it to about 5 or 6 lessons, my English teacher didn’t realise I was in her class one time I went in for A2 revision as I had a different teacher half the time and hadn’t met her.
I did try to start going to college after my A levels for a design course to get into uni but I managed one day and had to drop out a few weeks in as I couldn’t keep up. I think there were a couple of years where I didn’t do much, it’s a bit of a blur, but then I saw an online course for the OU and I decided to try and do a degree with them. I can work on my own schedule as long as I get my assignments in, and they’ve been great about extensions the twice I’ve needed them. It will have taken me six years I think by the time I finish my last course this September but it’ll be worth it.
I think in the past three or four years I’ve had more blood tests and hospital visits than I had before, though I’ve had regular blood tests for everything under the sun it feels since I was first diagnosed. I often wish they’d find something else in the blood tests that they could say ‘this is what’s wrong, it’s X and we can give you Y to help fix it’ but that doesn’t seem to happen. I did have about 8 months where I was on thyroxine as my thyroid was a bit iffy and they weren’t sure if that could be a cause but apparently it wasn’t as I was taken off them again. I’ve recently been sent to a near nose and throat doctor as one of my current symptoms is light headed and dizziness but there was nothing they could find. He also knows about ME and does acupuncture though and so I have my first proper appointment on Thursday, crossing my fingers it helps!
It’s been ten years now and over these ten years I’ve learned to listen to my body and learn when to take a rest. There are new symptoms popping up at times that make it harder to cope with but overall I’m a long way from where I was ten, or even five, years ago where I couldn’t get out really. I still have to choose between working on my course or going out and it’s not exactly a normal life where I can do what I want without having to plan the days before and after but I’ve improved a lot and now I’m starting my own business (hopefully) and will have a degree by the end of the year, two things which I wouldn’t have dreamed of when I was first ill. It’s taken me longer to get here than if I hadn’t had ME and I haven’t been able to acheive the dreams and goals I originally had eleven years ago but now I have new ones. I know it’s hard, especially when it’s a bad day, but try to focus on the good things, no matter how small.
I don’t know if anyone’s still reading, I hope this wasn’t too long and rambly. I probably haven’t gone into that much detail, but compared to a lot of experiences I have been very lucky with support and the GPs at the local surgery all believing that ME is a physical illness as well as ther being mental aspects to it.
If anyone has any questions about ME, or any suggestions about topics in general on the blog then feel free to email me at firstname.lastname@example.org or leave a comment if you want 🙂