I’ve said it myself: “ME is not only about the tiredness, folks.” I also suffer from insomnia.
I find the insomnia, rather than the sleepiness, one of the hardest ME symptoms to deal with. When it comes around it happens without any warning and is not usually linked to anything obvious that I’ve done or not done during that day.
I’ve grown used to discovering that my body is a different beast since I’ve had ME. I feel like it’s a stranger I’ve slowly got to know: sometimes I’ve got a handle on who they are, sometimes I’ve been wide off the mark.
My body plays to different rules, ones I can’t exert any control over and ones that aren’t true of my true self – the person I was before I got ME.
Getting a good night’s sleep is one of the things that I have to do to give me a chance of a reasonable day the following day.
I rested in the dark under my duve from 9 0’clock, my usual routine. Having drifted off, something woke me up at about 1:30 am. It was a tiny noise. I craned to hear it again but it had stopped. I turned over to wait for the softness to call me in again but it wasn’t there. I was frazzled and awake.
All night I waited to see if the feeling of relaxation and gentle, sleepy warmth returned but instead I felt a familiar wakefulness heralding a crawl through the night hours. It is futile to stay in bed, tossing and turning when I have insomnia so I got up.
In the dark hours I cleaned by bathroom, my kitchen, I looked through some photos I’ve taken and need to organise. I watched Sarah Beeny selling houses and the House Doctor rearranging them. I thought about what to cook the next day, I thought about this blog post and I thought about the conversation with my father and whether I could trust the Tories after all.
I picture days with ME with different elements in my mind. A day after not sleeping is a day of steel clanking together, of tension and of ancient ships hulls beached in docks with me bobbing in the water.
When dawn broke yesterday became a day of struggling against and discarding the dubious advice given to people with MECFS that you should not sleep during the day.
Victoria Derbyshire, the programme on BBC2 in the mornings was on by the time I turned over and sleep found me again. Even then, though, my body fell back upwards to wakefulness 1/2 an hour later in time to watch an article from a woman with MS who described the benefit sanctions that she had experienced.
My eyelids were opening and closing and my vision was blurring with the tiredness but I watched it. I was struck, again, by how difficult it is to properly explain how benefit sanctions really do impact on someone when they happen.
One of the useful points made was from the minister interviewed for balance and comment.
He said that the problem with the medical professional reports that are given to support people going through Work Capability Assessments or appeals is that they: “don’t say how the health condition affects them day by day.”
In other words, it’s not enough to send a medical letter saying: “She’s got MECFS.” it has to say exactly what that health condition does to someone.
Having been through this process all I can say is that getting your GP, consultant etc to actually write a letter in the first place is one of the biggest problems with this system. Let alone then going back to them and saying:
“Um, sorry, the letter I forced you to write in the first place isn’t detailed enough. Could you re-write it please?”
The system discriminates against those people who don’t have the right medical evidence full stop.
As good as that article was, it didn’t penetrate my heart and soul in the way David Clapson’s death did.
I’m sorry to say that the woman interviewed was too articulate, too even, too apparently ‘all right’ even though she was put through the mill by the benefit delays she experienced.
She also didn’t explain how she did cope financially during the time of the delays. Does she have partner or a home or a family who helped?
I think people will come away from watching it thinking that people suffering with life and death decisions because of the benefit system is an isolated incident.
All day yesterday I was tense from tiredness. It is hardly surprising. Before ME, shocks followed a pattern.
Something shocking would happen, then I’d go numb for a bit, then the numbness would subside and I’d cry, or exercise, or go out and get pissed or do something nice as a treat and reflect and make sense of it and move on.
That doesn’t happen any more. It’s a scrambled jumble of cause and effect.
The whole of the last 7 days have had an impact. Even starting this diary and writing it has affected me too. Pushing through my natural need to not do too much to remain well and writing is making me more tense. This is a way my mental health is affected by ME and by what happens around me.
I think the insomnia was partly to do with doing too much and partly because my body is working through all the information and mis-information and information-to-come. Partly it’s just the way ME is now in my stranger of a mind and body.
I haven’t even thought about what I’m going to do if it looks like the welfare reforms will mean I can’t afford to remain housed, that’s beyond my ability to think through.
Last night I knew I’d have to take a sleeping pill to stop the cycle of insomnia dead in it’s tracks. A sleeping pill is the only medication I take to help MECFS and when I use them, they are fantastic!
All day the sense of anxiety and tiredness didn’t leave me. Can I trust the Tories as my father suggested? Should I not be worrying so much?
Then the news reported that Justin Tomlinson has been appointed new disabilities minister at the Department of Work and Pensions. He’ll report to Ian Duncan Smith.
Almost immediately there were comments about how this appointment is “obviously because he’s going to push through welfare reforms.”
Tomlinson has previously voted against protecting welfare payments for people with cancer and children’s disability benefits.
A person I know in an ME organisation said: “It’s like putting Hitler in charge of the nursery.”
He also voted for the bedroom tax.
The jury is no longer out about what we should expect…..
© Lindy 2015