Tag Archives: ME/CFS

time to panic

Yesterday was one of those days. I had things to do, places to be, and I was anxious as all get out.

These were not fancy, exciting things. I get more stressed by personal admin than I do by Grand Events.

My list?

  • wash hair
  • walk Jake
  • go to bank
  • return library book
  • meet friend
  • walk Girl2 to ballet
  • buy printer ink

Ah, I can tell you’re all quaking in your boots. A list designed to defeat…

It was a day I yearned for the energy and clear head I once had. When I worked full time and didn’t consider washing my hair a task. When banks and library books and ink were done around the margins, without planning, without medication.

as if I'd wear heels like that to work!
as if I’d wear heels like that to work!

I did everything (hurrah!), but collapsed into bed at 8pm, sore, overstimulated and unfit to move. I was actually delighted to get everything done- especially as my friend and colleague has a brain that works at a million miles a second. My plodding pace and repeated ‘what do you mean?’s meant that our quick coffee lasted for over 2 hours, and I ended up with a long list of things to read and consider and progress. That’s about 3 or 4 weeks good work for me, and she has it all done by this morning.

Most of the time I don’t think about what was, I get on with managing what is. But sometimes, oh, sometimes, I’d like to able to do more than one thing per day without needing more of the anti mad tablets.

pace yourself, woman dear

For those of us with limited energy, careful pacing is an important self management technique. Properly used it should help us cope with ebbs and flows in energy, by planning what we can reasonably be expected to do, and then resting. Building up, in teeny steps. Plateau. Build.

I’ve bought the books. I’ve read the leaflets. There are useful websites, and maybe even an app. I’ve spent time learning, with occupational therapists and at home.

Pacing is not about going flat out for a few days because something is ‘necessary’ or ‘interesting’, and then spending the rest of the week (if lucky) in bed.

nap

Why can I not remember that?

Ah, well that’ll be the brain fog, forgetting that I need to pace.

On the other hand, that’ll be the curiosity, the mind sparking, the not wanting to miss a moment of what’s going on.

Me and ME- unpredicatable, unreliable and a joy to live with. Isn’t Spurs Fan a lucky chap?

image from pinterest

plans, and life

Ah, the new year. I’d be organised. The housework would all be done. I’d understand what everyone was talking about. I’d develop a strategic viewpoint. I’d get niggly things sorted. I’d post on the blog regularly, and plan ahead. I’d know what I was doing.

So, how has it happened that it’s 2.30pm on the second Friday of 2013, and I’m just out of bed? The ironing pile hasn’t been cleared this year. There are notes of meetings to sort. Conference invitations. How do we brief the Minister? Worst of all, the medical insurance review form needs completed if the mortgage is to be paid. (One of those insurance things that are often mis-sold has come in very handy.) That means I need to spend lots of time trying to articulate what I can’t do- always joyful.

Yes indeed people, my head is spinning, but my body isn’t complying. Those meetings that need to be followed up? All that getting there and then doing thinking has worn me out. L and I are still trying to top up our culture with lunch time events which are good for the soul, but bad for the body. My limbs are like lead. Sitting upright is more of a challenge than you might imagine.

My head is busy; if only I could be sure that mean it was working properly. Too often that’s just a spinning fog, so there’s no guarantee I’ll be able to make sense of the 26 questions I have to answer for insurance purposes.

I’m alive and well, and reading your posts. I’m as busy as I can be. I’m recovering. Life is laughing at my plans. Prepare for more fluff and other people articulating my rage better than I ever could. Maybe I could persuade Owen Jones to complete my form?

This the song that’s been in my head for days. I’m not that flexible, and I’m wearing enormous pyjamas in the middle of the afternoon.