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STRIPEYSOCKS BLOG (not part of the book!)

I Don't Do Mornings


I don't do mornings. Well, not early mornings. Except when I do. And that's when I really really feel like it (rare) or when I have to (not rare enough). Doesn't it always catch up with you when you've had to function day after day out of your natural rhythm? That's what happens to so many children with ME whose families I deal with. Tutors insist on arriving at 9.30am. Doctors' appointments are made for 9.30am. Schools want the child back in class by 9.30am. What is so morally correct about 9.30am? Maybe it's a throwback to the old nursery rhyme: 'Early to bed, early to rise, makes a man healthy, wealthy and wise.' Unless you've got ME. Then it doesn't. Due to a dysfunctional hypothalamus gland, wise is just about the last thing it is for most of us.

It shows on our faces, if people would only notice. It shows on the children's faces. Panda eyes. Skin sometimes white as a ghost. Not the blooming face of a healthy child at all. Why can't people see? Look, guys, look at the children. And have some compassion.

What sparked off this thought was seeing my on-screen face in my latest media interview on ITV Anglia. Surely not? That's not how I looked in summer, relaxing in the garden room (which used to be a conservatory, but it leaked – that's another story). I dug out this selfie on my phone – the one I know how to use, in contrast with my lovely new one, which I can't get the hang of. (Can anyone with ME get the hang of a new mobile just like that? I tried out the alarm function and had to text my son to ask how to stop it going on and on and on and on... Then I did a test call to my landline but couldn't find out how to end it. I was mortified to hear myself muttering in frustration on my own answerphone, until BT decided I'd gone on long enough.)

So I found the summer photo. I was right. Not haggard or ill. Relaxed. Just a few of those friendly 'I'm not so young as I used to be' signs of time, but nothing like the apparition on the TV. Yes indeed. What we do is written all over our faces. Too much effort? Haggard and ill. Whatever the hour (even when the dreaded morning is over and we're well on through the day) too much effort always shows. Haggard and ill. However bright as a button we try to act (even though we collapse later) it stares back at us from the mirror, or in this case, from the screen.

And then I listen. Nice little news feature, but I seem to have been cut off mid-sentence. [Sigh: those recorded interviews. It's always the editing. I much prefer live.] In 1996, in the original ME – The New Plague I wrote: 'Now we see ME called Chronic Fatigue Syndrome, muddying the waters yet further, for this is a wide umbrella term that includes cases of fatigue-inducing conditions that are not true ME at all'. For many years both I and Tymes Trust have insisted that ME should be separated from the disastrous umbrella term of CFS. We published this call in our 2007 appraisal of the NICE Guideline (just republished in ME Briefing – not NICE) and we are still repeating it. What many people derided us for ('Oh no, that'll never happen') has already borne fruit internationally and in the UK too.

My ME – the New Plague 2, serialised on this site, opens by examining two examples of the media coverage I've been involved with. I have tapes and disks going back, way back. If you haven't read those episodes, or want to remind yourself, you've just got time before the third one is published. There's been an inevitable time-gap due to the volume of charity work and speaking commitments, but now I'm back to the keyboard folks, and we're off and running.

But I probably won't do mornings. Unless it's in bed.

Jane Colby