It’s been a while now. Normally my crashes seem to last a couple of days. This time though it’s been weeks going on months. I just can’t seem to climb out of this hole and get back to normal. I think I’m getting there but then a busy day seems to drag me back down again. I’ve still just about got through my days at work but everything else has been a write off as I spend endless hours trying to recover. It’s given me time to think, probably too much time to be honest.
I've recently been trying to class my M.E. I’ve always struggled with how to tell people about it and how to describe myself. I've tried saying to some people that I am better and to others that I still have M.E but both don't really fit my situation.
How can I say I'm still ill when I have been able to run marathons but then how can I say I'm better when I have weeks like last week, when I'm so tired I feel that even moving and speaking are an effort.
I think the best way to class my illness is to say that I'm in recovery, as with every recovery though, progress is not a constant. There is no linear graph showing a straight line of improvement, instead there are ups and downs. A two steps forward one step back type of thing.
The last few weeks though have felt like I’ve been stuck in reverse, free-falling back down the graph, back past all the progress I had worked so hard to achieve.
It’s never usually been this bad, it never usually lasts this long. Normally after a few days I can see the light at the end of the tunnel, but this time it’s just kept on going. To say I’m frustrated is an understatement. To be honest I’m slightly scared, questions like, what if I don’t recover this time? keep on dancing round my brain, taunting me.
So as a last resort I did the thing that I always hate, after weeks of feeling shite I went to my local GP. Almost twenty years after I first ‘troubled’ them with my M.E, I thought, or rather, I desperately hoped the world might have moved on. That after years of trying to work this thing out on my own that someone else may be able to help out, that there may be some new research I hadn’t heard about.
Sadly I was to be disappointed.
While describing my symptoms I was met with the same disapproving look, the one that told me I was just a faker, a time waster who was just over reacting to feeling a bit tired. The look that told me I should leave now and let the surgery deal with people who are really ill. Those who they can actually prescribe something for.
The anger slowly built
After I was finished I was met with the line ‘so what do you want us to do for you?’ before being told that exercise might help me.
The anger now took over.
I was now in a time warp, transported back to how I felt as a scared and confused kid in 1999. Suddenly I was back in the middle of the same battle I always fought, the one where I am fighting to be believed, to be taken seriously.
Instead of smashing up the room in a rage, a joyful scene which had played out in my mind, I calmly explained that I did exercise, I ran quite a lot actually but you know what, in the last few weeks I had been to exhausted to get out of the door. “Yes, I had tried” I explained “and it has made me feel much worse.”
No, I was simply here because I was desperate. The GP has always been my last resort, the place I am forced to go when I am all out of options.
So in answer to the docs question, I was just wondering if there is anything that could be done to make me feel slightly better? After all that’s what doctors do, right?
Unsurprisingly, I was told that there was nothing much they could do but I would be put down for yet more blood tests and, probably to try and stop me coming back for more time wasting, any other test going.
While ticking the boxes and filling the forms I was then told that “everyone I see feels tired from time to time.”
At this point I had mentally burned down the surgery and was doing a merry dance around the flames. Instead I tried explaining yet again that this was more so much more than being just tired, before thanking the doc for everything they could do and leaving. (Why the hell am I so fecking polite?) Without someone shouting and screaming I doubt doctors like this will ever understand. Sadly I’m not the shouting and screaming type. Passive aggressively blogging about it later is much more my thing.
So I walked out the surgery in a ball of frustration, anger and loneliness. Once again I was on my own.
