Monday, 22 November 2010

You know you've got ME/CFS when.......

I'm not one for inspiration, I seem to drift along in my world and miss all sorts of shareable, blog-able stuff. Or Maybe, it doesn't even happen to me, I dunno!
But I got a tweet (twitter speak for the uninitiated!) today, and I quote,

'You know you've got ME when..... you eat your cereal with a large spoon cos it takes less energy'.

This got me thinking about the little quirks that have crept into my life and become almost habitual since becoming ill, the kind of thing the doctors never warn you about!
I have to say I often let my cup of tea go almost cold, so I can drink it in just one 'mug-lift'. I also shuffle about the bedroom, herding dirty laundry (socks are especially tricky critters!) with my feet so I only have to bend down once to pick it up. Mmm, sorry for the slightly grubby picture of domesticity, but such is my life!!

I walk around accompanied by a kind of wind-chime sound when I'm out of the house as I have to attach my car keys, house keys and work i.d. to my person, so that I don't lose them! Goodness only knows what would happen if I fell in the lake.....sink like a stone I expect!

I'm certain these aren't the only things that I'll think of, and will probably add later, but please let me know of any little things you do now, that make life a little easier.

You know you've got ME/CFS when .............

Wednesday, 17 November 2010

Elephant Footprints on my Brain!

It's been a very long haul since the last time I felt able to write a post. My life seems to have been taken over by a very exhausting and largely unnecessary situation which is not easy to blog about.

I would love nothing more than to tell all, and share how difficult things can be for PWME who also work, but I'm scared that blogging about it may compromise myself and my situation at the moment. It REALLY doesn't need any more complicating!

So, I think I'm on safer ground telling you how my health is being affected by the 8 month ordeal (so far!) that I find myself staggering through - utterly mentally, emotionally and physically exhausted-!

A lot of added stress is being placed upon me by a boss and a situation, despite advice from medical practitioners, and the situation just goes on. I have been left striving to continue to do my job, giving 100% as I always do. This has not only halted my recovery from the ME/CFS crash that happened a year ago, but has reversed it somewhat.

My body has been less mobile, more painful and on the whole plain old 'doddery-er' than at any time I've been at work. I often drag my legs, stumble, lose balance, shake and can have very painful muscle spasms to contend with, whilst trying to maintain myself and my work persona.

My heart rate has been all over the place, and light and sound sensitivity have threatened to put me on my back more than once. The heavy dragging emptiness of the fatigue (many elephants worth!) is sometimes overwhelming, but me and the herd, we fight on!

Mentally and cognitively the challenges are ELEPHANT SIZED too! I am having to try to keep 'he said this' and 'she said that' all in my head and talk about them with some kind of fake confidence. I am trying to keep written records of key conversations but even committing them to paper is an ordeal that leaves 'elephant footprints' on my brain.....destroying it for the rest of the day!

Face to face meetings about contracts and grievances are horribly difficult to be in. Not only is there the stressful situation, but I am having to keep attention, understand and think through points with little or no support from others. I am under pressure to be able to respond with correct, meaningful words and facts in a confident and positive way. Not always possible for me, and certainly not easy even on the best of days!

My emotions are all over the place-am i able to cope for the next minute, hour, day or week? Is my energy going to hold out for this meeting, or this phone call? How long can i continue to go on like this before i am totally wiped and back on full time sick leave again? Is this what would make some people happy? Endlessly being kept in the dark is also taking an emotional toll.

Please forgive the indulgent 'offloading' that just got in the way of what could have been an informative and interesting post! Maybe when my body, heart and head can relax a little more I'll be able to create one!