I was first diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome approximately 6 years ago, but have suffered with it for over 10 years. As ridiculous as it sounds now, when I first started noticing the symptoms, I just thought I was lazy. Like I'd woken up one day and 'just couldn't be 'bothered'. But after 3 years I was starting to suffer painful intestinal pain.
I remember the Doc in her own flippant way tell me it was DEFINITELY this this time or DEFINITELY that, because we'd ruled everything else out, after being told I DEFINITELY had them.
I'll never forget the day I was told what was actually wrong with me. In fact, I almost missed it due to Doc's flippant demeanour: "it looks like ME, but most dictors don't believe in ME"
"I assume you don't?"
"No, not at all"
At that point I had to have her tell me about it and she described everything I was feeling perfectly. Initially, I was relieved. I finally had an answer, but the relief didn't last long as the penny dropped.
"You mean I've had classic symptoms of an illness I've never heard of but you have, and you never thought to mention this once in 4 years!!?"
That flare-up had me housebound for 9 months. I transferred to another GP's practice and a locum was able to instantly diagnose me, but now much else. Anti-depressants were the one and only solution. I got there, though,and, having not suffered a flare up in years, I finally felt comfortable hitting the gym again. I worked hard and, between January and August I managed to lose 7 stones.
I noticed by September I was having to start forcing myself up again in the mornings. Didn't think much of it at first, then I started skipping days at the gym. Firstly the earlier one before work, then 3 or 4 in a week to the point where I've not been near one since mid-October.
The basics of the illness haven't changed much. I over an hour to get my self out of bed, struggle to work (I'm late every day, but my boss is cool), try to keep my head held high, and get through the day as best I can, hoping no-one sees how much this affects me.
Sadly, this flare up has trumped the other one. The debilitating pain, the balance issues and crashes in BP, the brain fog, the forgetfulness and then there's the fatigue. Fatigue you just do not think is possible.
So, it was back to the GP, only to find that since my last flare up 6 years ago, ME seems to have been forgotten about: no new insights, no new medications, no lifestyle tips from my doctor. He just handed me the same anti-depressants he did last time and sent me on my way.
Yet, with every passing day I'm waking up feeling worse than I did when I ended the previous day.
I know there's people who look at me and wonder what I'm up to. 6'3, was hitting the gym every day and now I'm in agony just because I tried to use a pen.
When I think back to how hard I was working such a short time ago, I feel weak, pathetic and ashamed of my body for letting me down
I don't know where to go to ask for advice.
Does anybody tell me how they manage flare ups? Are their dietary advice that can help manage this?
I can accept never going to the gym again, but to have your chest burning with exhaustion because you've walked ten steps for a piss is a bit much
Thank you in advance