So I thought I’d start with a summary of my life with Myalgic Encephalomyelitis (or ME/CFS). I’ve spent about 18 years dealing with it and am currently in a state of relapse. I’m going to write up a brief history and go from there.
It all started when I contracted Glandular Fever when I was 14. I was told I’d feel tired, achy and sore for 6 weeks with swollen glands and a sore throat. Little did I know 6 weeks would turn into 18 years counting…
I spent nearly all of the last 2 years of school at home, I missed half my end of school exams and spent an awful lot of time sleeping. The Glandular Fever did not want to go. By the time I was 16 I had more or less got used to being exhausted and weak and thought it was quite normal, that it was still the after effects of Glandular Fever and I’d get over it eventually (or so I’d been told..).
I started a full time apprenticeship and struggled on for the next year or so. I dropped out of college about a year later and went down to part time work as I was finding it all far too difficult. At this point, I didn’t really think anything more was wrong, I think it was slowly creeping up on me and because I’d felt tired for the last 3 years, I didn’t really notice a difference.
While I was working, I was using my dinner breaks to have an hours sleep in the car then going to bed as soon as I got in from work. My weekends were used recovering from the week at work. I still didn’t think anything was wrong.
It wasn’t until my Mam found me passed out asleep in her kitchen one afternoon (and worked out I’d been there for 4 hours with my face on the table, with no recollection of falling asleep) that she suggested I go to the Doctor. I got my diagnosis of Myalgic Encephalomyelitis shortly after, got offered the usual ‘we don’t know how to fix you so here are some anti-depressants’ and I just plodded on as I had been with no real support and no real idea of what M.E was all about.
I spent a long time being very ill but continuing to work as and when I could as that’s just what you have to do as an adult, right? I started my own business and worked part time also. After I few years of pushing myself far too hard I had a huge crash. I couldn’t get out of bed for weeks, or months, it’s all a bit blurry.. I couldn’t take care of myself or eat. So I moved back in with my Mam, stopped working entirely and just slept. I barely ate and lost a lot of weight. We moved house to a small village about 30 miles away and I became even more isolated which certainly didn’t help matters. That was when I fell into a very deep depression which took years to come back from.
About 7 years ago, with the mental health issues improving, I moved back to my home town and decided to start college again. I had to leave after 3 months as it was too difficult but on the plus side, it got me socialising and motivated to do something with my life. By this point I was coming out of the other side of depression and although struggling physically still, it felt like I was improving in general.
A couple of years passed I was working part time for myself again, part time in a pub and getting on a lot better. The M.E symptoms seemed to have lessened and I was able to work and socialise without too many problems. I still struggled if I over did it, but it was manageable, I found as long as I paced myself I could have a reasonably ‘normal’ life. Looking back at my Facebook over this time I spent a lot of time updating that ‘I had a another virus’, ‘Was in a lot of pain’ or ‘Was stuck in bed ill again’ but it was a huge improvement on before, and compared to now.
As is very easy to do, I ended up taking on much more than I could manage. My partner and I opened a shop where I was working there full time (and often evenings to pay the rent) plus working 3 shifts a week in a pub. We closed the shop a couple of months after we took over the pub full time (which was about 2.5 years ago) but I’d already burnt out by then. I was working 70-100 hours a week, running a shop and internet business, trying to pick up another failing business from the ground and on top of it, completely gut and clean a 4 bedroom house and move into it, all at the same time! That ended pretty badly as I’m sure you can imagine. It would be burn out for a healthy person never mind someone with a chronic illness, I honestly don’t know what I was thinking!
I’ve spent the last couple of years relapsing which I’m finding very difficult. Mentally, I’m the best I’ve ever been, I’m motivated and excited and enthusiastic about work and life and just want to be getting on with it! It’s frustrating that once again the M.E is holding me back. I’m finding it incredibly difficult to pace myself and at the moment, over doing it can be as simple as getting out of bed! Other days, I can work, take a 15 minute trip to the post office or go out for dinner. It’s a hard one to judge but I’m struggling on as best I can through it all.
I’ve not included much about doctors appointments, diagnosis and treatment as this post has gone on long enough so that will be for another day.
Anyway, that’s a basic summary of my last 18 years living with M.E. If you’ve got though all that, well done, it wasn’t as brief as I was intending but it’s hard to summarise 18 years in a few paragraphs!