To fellow CFS sufferers


One of the crazy, stupid symptoms of this part of my illness (CFS – Chronic Fatigue Syndrome) has to be sleeping.

Well, not the actual sleeping per se but how it behaves.

For example, it is currently 4am. I have been awake off and on since 2am, but right now I am so awake that I want the day to start now.

It is called wired-tired, and normally occurs around 9-10pm when it is time to go to bed and sleep and all you want to do is party (although you can’t, of course, because if you tried you would last about two seconds before you collapsed with total exhaustion).

The other side of this insidious illness is that I know for a fact that when I finally go to sleep and wake up around 8.30am, it will be physically impossible for me to stop myself from falling asleep again.

What the?

An example is yesterday. Being a Saturday I was determined…no, determined…to stay awake so I could spend the day with my precious wife.

I finally got out of bed at one-thirty in the afternoon (??).

This is the stupid part I mentioned earlier.

I sat up in bed at 8.30am rubbing my eyes until they were sore, drinking iced coffee, reading, doing anything and everything to stay awake. However, and I would be interested to hear from other CFS sufferers about their experiences, it felt as though someone had each of my eyelids between their finger and thumb and were forcing my eyes shut.

The first I knew that I had gone to sleep again is when I woke up, head down, book in my lap and a very stiff neck. Angry, I redoubled my determination to STAY AWAKE!!

Crap, I’ve woken up again and my neck is very sore this time. Alright, I am getting out of bed and getting dressed (it is around 10.30am now) because I do not want to waste a Saturday!! Here we go!!

What the?? Head down again, and hell does my neck hurt! Bastard, I went to sleep again!

Alright, it is now about 11.30am and I WILL KEEP MY EYES OPEN AND STAY AWAKE!

Owwwww!! What?? No, could not have happened again, I control my body and I was staying awake damn it! Just after noon??? And I am still so tired that if I closed my eyes for more than a second I would be asleep again…wait, no you don’t, this time it is out of bed and WOAH my legs are collapsing and I am trying to walk and I am bumping into everything but at least I am awake! Take that you stupid CFS…what? It’s half past one??

And that, dear reader, is the stupidity of CFS. I could easily get up now, at just after 4.30am. Yes I would still be exhausted – I only remember waking up feeling refreshed and actually, really awake once in the past thirty years – but I could at least stay awake.

When I go back to sleep, in half an hour or an hour from now, I know that I will wake up around 8.30am and have absolutely no control over my staying awake or not. Some days, when my wife is working, I just give in and wake up when she gets home around 3.30pm or so, still feeling like I could sleep another ten hours and knowing that if I do not get up I probably will.

Which is why I am writing this at…4.42am. Because I know I will have no control over my body until much later today, sometime in the afternoon. Maybe.

I hate it, despise it, if CFS was a small creature I would rip it to pieces and then stomp on those pieces until nothing remained. I am angry, furious, and yet I have no control over it.

Many people, on reading this or hearing stories of people with CFS react with “Wow, wish I could spend all day in bed sleeping.” Well my dear fellow human being you are completely missing the point and have zero understanding!

Yes, if I had full control over my body and was actually in charge of my life, a day in bed would be glorious. The point, however, is that I feel incredibly exhausted all the time and have absolutely no control over when I sleep or for how long.

Try having a life around that! You might get to work at three in the afternoon, then fall asleep at your desk half an hour later. How long would you keep your job for?

Or you make plans to meet friends for lunch and then completely sleep through it. Yes, even with setting an alarm. Alarms for me are now just a reminder of past years when I could force myself to get up, when I was still in control. Today they are simply a temporary annoyance that my body ignores completely.

Even worse, every second of every day you know that if you closed your eyes for around three seconds you will fall asleep. (You can relax, I gave up driving months ago – another effect I hate about this part of my chronic illnesses (oh yes, there is more!) is losing my independence. Thank you CFS, I now feel like a ninety-year-old who cannot drive anymore because they cannot be trusted to remain alert at the wheel).

Three seconds until I fall asleep? Except between the hours of three and five in the morning, of course, when you just lie there wired so tight that even though you are exhausted you cannot sleep.

So you write a blog instead, that will be read by, maybe, three people.

Yeah, that is what I call a glorious life, bet you are jealous!

5 thoughts on “To fellow CFS sufferers”

  1. I feel your pain, although for me, getting to sleep and staying asleep until my alarm goes off at 6am to get kids ready for school is a nightmare. Every day is exhausting and I feel guilty I’m not doing enough for my family. I sleep so little and it’s getting worse. Like you, I don’t remember the last time I actually woke up feeling refreshed. But we are fighting a losing battle, one we’ll never be able to control so we have to accept that we can only do what we can do. Nothing more and nothing less. We need to be kinder to ourselves and i think maybe you should take to reading lying down and save your poor neck any more grief :0)

    Liked by 2 people

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