Cannot Flippin Sleep … Still!

Cannot Flippin Sleep or Chronic Fatigue Syndrome or CFS is the bane of my life.

Happy New Year to anyone bored enough to be reading this hehehe.
I have bumped this post – first published in December -to the top in case you missed it and also because even with two sleeping pills a night – I’m still awake!! You should see my bags…

You might think that the problem with CFS is too much sleep, an inability to stay awake if you will. You might imagine it involves a good nights sleep of, say, 10 hours and then drifting in and out of snoozes during the day. Maybe it does in some cases.

That is not how it affects me.

My main problem at the moment is disrupted or disturbed or disabled sleep. This week I’ve had perhaps one night when I’ve slept well. No, thinking about it I think it’s over a week now since I had what could be described as a good, or even just as a normal, night’s sleep.

There is the pain issue. My ankles kill when in bed. I’ve tried wearing socks which sometimes helps. I’ve taken to wearing my ankle support in bed the last few nights and this seems to make a little difference. I have as you know been taking pain killers – firstly Co-proximol and then Tramadol. I thought the Tramadol had done the trick but then that hasn’t been working at all this week so I’ve stopped taking it.

I cannot get comfortable. My legs ache and throb constantly and I find myself writhing around trying to get them in a good spot. I find a place that appears comfortable but within a couple of minutes I’m rotating again, looking for that mythical position of no discomfort. It doesn’t exist in my bed I tell you.

My head aches with the effort of trying to sleep. There is a now psychological element to my problem. I need sleep and I know it. Every night which goes by with little or no sleep adds to the pressure in my mind as soon as my head touches the pillow each night . . .

Right- time to sleep, shut eyes, empty mind and reeelaaaaax . . .

Aaaaarrrrrgh, mind spins off into random flitting thought, legs start up their percussive throbbing and a thrashing and it’s another night of impossibly slow time travel. I can stop time with my mind. Yatta!

I swore in church yesterday, apologies oh godly one. I had just remembered that the one very important item on my shopping list – Nytol – was the one thing I had forgotten – perhaps, in fact, because I had forgotten to write it on my list in the first place! Luckily an angel was in the church at the time and she invited me back to her place to have some of her husband’s supply. I did that and also benefitted from a cuppa and a mince pie – thank you to her and her angelic family 🙂

I have got an appointment to see a chronic fatigue specialist. Yes, there is one. Although you wouldn’t know it if you asked your GP, or your haemotologist, or your hepatologist.

This lady, Dr Myhill, worked in the NHS for 20 years but now specialises in treating fatigue and in preventative medicine. The first appointment I could get is mid February – I’m hoping it’s worth the wait.

Her website is extremely informative and rings so many bells when I read it that I could contract out to all the local churches. This is the address if you want to check it out:

It’s full of information about fatigue and other health problems. I don’t have all the problems that she associates with CFS by any means, and for that I’m grateful, but here is short list of my symptoms taken from her section:
CFS /ME (Chronic Fatigue Syndrome) – how to diagnose and which tests to do’

  • Severe fatigue which is physical and mental and usually delayed 24-72 hours after exertion;
  • malaise (i.e. a feeling of illness);
  • muscle pain, usually worse with exertion;
  • muscle weakness (without the eye manifestation she refers to)
  • very poor stamina;
  • sleep disturbance (whereby the “biological clock” is moved on 4-6 hours and CFSs drop off to sleep late and wake late) – (in my case there is little or no dropping off and I find myself only sleeping in the early to mid morning);
  • alcohol intolerance;
  • autonomic nervous system disturbance (which as she explains can lead to problems with poor temperature control and extreme temperature intolerances and sweating – another nightime problem I’ve not yet mentioned)

She also refers to the mental fatigue which manifests as:

  • poor short-term memory,
  • inability to follow a line of argument,
  • difficulty reading or watching TV,
  • poor problem solving ability
  • poor learning.

I can relate to 4 out the 5 there and am incapable of focussing if there is more than one thing happening – i.e. I can watch the tv but don’t try and talk to me while I am, because I will lose the ability to watch the tv, as well as be incapable of listening to what you are saying. Sound familiar to friends and family?

I know when people ask me how I am and I say – Oh, tired, same old thing – they probably think and indeed sometimes say – Oh yes, I know how you feel, I’m exhausted I had such a busy weekend…

Final quotes from Dr Myhill’s site:

“Many patients believe, (with some justification!), that they are going demented.”
“However, usually there are no abnormalities on physical examination, indeed, often the patient looks well.”

Ho ho ho!


0 thoughts on “Cannot Flippin Sleep … Still!

  1. How horrid!I have no idea how that feels, but do remember when I had shingles I didn’t feel or look at all unwell (just a bit spotty!) and felt like a right fraud staying off work. However, as soon as I tried to do anything, I was swept with a wave of exhaustion which couldn’t be explained any other way than ‘I must still be ill’. So keep telling us how you feel so we can understand even if you’re not obviously pouring blood. This is a very educational blog. Having been accustomed to only seeing you on celebratory occasions, I feel much more aware of how your life is reading this – the same with reading your mum’s book. I had no idea what was going on day-to-day for the Ros/Juliet we saw at Christmas etc. It makes me very admiratious of you!Hopefully you will get a few good nights sleep before February!Bx


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