Haven’t managed to post for a long time. I’m maybe not as ill as I was back at the time of the court case in my last blog post. But I’m not much better either.

However I’m still alive. That’s the main thing.

Being rarely able to get outside and get any fresh air, or natural daylight, is killing me however. I live in a top floor flat. A nice flat. In a nice area. And with good neighbours. So I do realise I am lucky. But climbing the stairs is too hard, and has got harder over the years.

I feel as though my brain is shrivelling up and dying. I feel as though my spirit is starting to die also.

With ME, most of my life is spent “crashed” in bed after trying to do something the rest of the world wouldn’t even think twice about. Even just typing a text message is often too painful.

It’s been almost 6 years of Severe ME now. And maybe 30 years since my ME symptoms began.

But Severe ME is unimaginable. I certainly never imagined anything as rough as this could exist. As disabling and life limiting. At least not without any support (eg. medical, practical, physical, emotional, etc . . . )

You are totally on your own with it. The more ill you are – the more you are abandoned to sink.

The more severe your ME is – sadly, the less you will be believed.

The less able you will be to access any help or assistance. People will choose not to believe you can be as bad as you describe.

But you don’t have enough energy to keep pushing for help. I didn’t anyway. I still don’t. I tried and tried. But every exertion pushed me deeper into illness and without any help attained.

But I still keep trying to help myself.

Some of my symptons have improved a little over the last few years. Others are just as bad, or worse.

Overall I am living a very small life. I doubt many folk would call it living . . .

I am SO exhausted trying to help myself get more well. Exhausted physically, mentally, and exhausted to the very roots of my soul.

I often wonder if it would be less exhausting to just give up and stop trying? If the break from trying would actually allow for more recovery? Or would it result in my health sinking further? Who knows . . .

It is mindfuck.

I keep trying. But almost everything makes me “crash”. Which results in a further deterioration. Then there is the time needed to “recover”. To claw your way back up to the low level I was functioning at before I even tried.

I have seen a few people with ME describe this life as similar to The Life Of Sisyphus (from Greek mythology). That was the guy who was condemned to push a huge boulder up a mountain just to reach the top, then it would immediately roll back down to the bottom again. And he would have to start from scratch pushing it back up the mountain. And he had to do this for the rest of his life . . . !

A very apt metaphor for a life with ME indeed.

I have now lost the point of what I wanted to say. But I’m putting this on my blog anyway. Not caring if it sounds negative.

Regardless of whether it does sound negative, at least I’m writing again. And that’s a positive thing!

Another positive note: I have just drank a very big glass of Chardonnay. And it was lovely.

I AM grateful to be alive. Where there’s life – there’s hope.