Thursday, 14 July 2011

CFS - like climbing Everest in heels.

I'd like to think I'd been smart enough to think up that title on my own, but I think that I must have stolen it from somewhere else, rarely am I that original!

In a rare switch from my optimistic nature, today I am going to tell you some of my less cheery thoughts on CFS. As the title says, having CFS can be like climbing Everest in heels.

It's a toss-up for me whether the worst thing is pain or fatigue. I hate pain, but at least I can deal with it with medication, fatigue is less receptive to the quick fix. In this age of immediacy it's difficult to grasp that somethings can't just be instantly made better. Fatigue is a symptom that has to be dealt with by acknowledging that I'm in this for the long haul - I don't like that. I don't want to be living this way forever. So I chafe against the restrictions I place upon myself even though I know that I need them.

Another bugbear with CFS is it's invisibility. How can this illness be so debilitating and life-changing with so few external clues? I look ok, ergo, to the rest of the world I am ok. I will be the first to admit that I pretend to be ok, because I cannot easily prove that I am ill to everyone else. It's just plain unfair. If I have to be ill, why, oh why, can't I have something that
people know about and understand?

Then there's the inability to think, or speak. I am an intelligent and articulate person. (No, honest, I am!) CFS turns me regularly in to a gibbering idiot. On bad days I cannot hold a sensible conversation, or I unknowingly add random words in to the sentence. It's ok (well, it's not actually) with family, but with strangers it's an embarrassing nightmare.

Lastly there's the twitching. This is my one visible symptom of CFS, perhaps my wish not to have an invisible illness has in part been granted? I hate the pins and needles feeling of the twitch approaching and then my head and neck lurch to one side. It's best not to be sat near me when this happens, so far I've not injured anyone, but it's only a matter of time! I can do nothing
about this, and it marks me out as different, when all I am trying to do is fit in.

Wow! That was real stream of consciousness stuff, I actually feel better for sharing it. If you can relate to any of this and want to join a community where thoughts and experiences like this are common place, come and join us on the forum. You're not alone.

Note - I've worked out where I've cobbled together the title from. There's a quote somewhere that says, 'Ginger Rogers did everything Fred Astaire did, except backwards in high heels.'

1 comment:

  1. Nice words Kooky.

    It is the invisibility of this illness that drives me mad all to often. When I return to work next week I'll being going through all the usual stuff. Are you feeling better now? You are looking well. Have you you tried taking xyz? My cousin's nephew's brother's sister-in-law takes it and they feel so much better.

    Oh joy!