Surviving severe me

by Elle Ward

I wanted to write something for a while but every time I even thought about it, all I seemed to be able to come up with was a smiley article, something that told everyone to keep smiling and right now I wasn’t sure how much I believed in it. I know when I get cheers I work my way through it slowly, omitting the happier article until I good day, a better day. So to type out something I avoided seemed somewhat a contradiction, even an illusion, and it seemed it I was to be myself anywhere it was right here.

I'm not saying that I'm not happy all the time. In fact most of the time I do believe in the happier things, about knowing I will get better someday, about remaining positive, but I also know how alone I sometimes feel. Like no one understands the other side of it. Its impossible to stay positive 24/7, I know id explode!

Life with M.E. is something you can draw from, learn from, live through, but it is also something that more or less sucks most of the time. When trying to think of one of the positive sides of M.E. the best I could come up with was not having to queue for rides in theme parks (good I know!) but its not much comfort right now, especially while being so ill I cant take advantage of it! In the end I'd always prefer to be able to queue all day standing, to have that much energy!

It seems so hard to see the end of it all, what change will come about to make me better, to improve things right now. Sometimes I like to think that the week I get better I will go see a million musicals in one week, will dance, will sing, will watch movie marathons, will party to dawn. That one night a miracle will happen and I'll wake up good as new. No that isn’t the way this'll end I know, but sometimes it's easier to believe than the real version that is so uncertain and takes time. In the real version I start to improve slowly over the years until finally I am recovered, I'll see a musical once, one month, make it to the cinema in my wheelchair, and then walk there. M.E. is a hard slog and sometimes it's just hard to see the end of it all.

I wonder if the life I have now is made up of missed moments, if every opportunity that I have no choice but to miss is another down the plug hole, if those moments and adventures are things that I will ever get back.

In the end hope is all I have, hope I will improve, and hope that I will get to where I want to be. I hate the uncertainness of it all, I hate that I cannot plan life anymore, but ultimately whether it is in my subconscious or not I know that this has to end at some point, at some time I will really see that my life is back on track.

I'm afraid of a lot of things, of getting worse, of getting better so slowly that I cant see it until I remember how ill I once was. Still it seems soppy to say but I am determined, I do wonder if I will ever reach the ultimate goal of wellness, and sometimes when I know in my heart that others have recovered, my mind just tells me, maybe I am not the same, what if things just aren’t destined that way?

Most days the light is so clear I can see it shining at the end of a long but manageable tunnel. In others it's nothing but a spark miles away extinguished by the darkness.

Still I hope in the end nothing matters as long as I keep fighting, that will save me, help me, until I meet my unreachable goals.