NOT ABOUT ME!
Hi – my name is Jonathan and here’s an ‘About’ page which starts by doing the exact opposite! Because I need to tell you what I’m not. I’m not an expert on everything that M.E is. I’ve had it on and off since the early 1990s so you’d think I would be… and I do hope I can be of help as I chart my learnings with you… but the truth is that everyone has it slightly differently. This makes us all experts in our own way and that’s why we need to share.
So this blog will explore my thoughts, my ideas to combat it and my journey (cue X-Factor music) which may or may not help you. I first had M.E as a teenager following Glandular Fever and missed more than half of my GCSE year. Back in those days, I was dismissed with little more than a ‘You’ll grow out of it’. Fast-forward to the turn of the century and, whilst always there in the background, I was finally beginning to think that was true…
…until 2015, aged 37, although some tell me they saw it coming way before that. A re-lapse, diagnosed with “classic M.E.” in 2016, the bugger is back and with it some mental health issues too. I have many of the typical symptoms – a body like lead, joint/muscle weakness, sleep disruption, post-exercise exhaustion, brain fog, poor memory/concentration, moodiness, alcohol intolerance and digestion issues. However, I don’t have other things like too much pain, sore throats, headaches and so on.
The other key thing to know about me is that some days I’m almost fine and other days I’m totally zonked. I genuinely class myself as quite lucky. Lots of people have it worse.
That said, it’s taken me a while to accept that I have it at all, largely because it frustratingly makes me the opposite to the active, happy person I naturally think I am/was. However, I start this blog at a point where I’m now working through that and determinedly (when I have the energy to be determined!) trying lots of things to manage and, who knows, even improve how I feel.
So that’s the sort of thing I thought would be worth sharing. Please share back because, whilst I’m so far impressed that the system takes M.E more seriously these days, it’s still little-understood and misunderstood in the main. Without a cure, the best medicine is solidarity and laughter.
I hope you’ll find both here.