Basic/general points of ME/CFS are covered on the page about me (See Introducing. . .) This post deals purely with the symptom of fatigue, an extreme and persistent exhaustion that is held to be one of the central symptoms of ME/CFS.
NHS: This fatigue is overwhelming and a different type of tiredness than previously experienced.
It can affect the sufferer both physically and mentally, making it difficult to perform everyday tasks. Sleep does not alleviate the symptom, activity often makes it worse, and depending on the severity of the case it can vary from:
- Needing to take things easy and possibly rest during the day. You may not actually sleep, but you lack the ability to follow your normal routine.
- Sleeping longer at night and/or needing a nap during the day. You may be able to do a lot of things, but you’ll suffer for it later. Half days are the most you can manage.
- Sleeping night and day. Even everyday tasks may be beyond your strength, you probably struggle to leave the house, or even your bed.
With ME/CFS, whatever level of severity you suffer from, if you attempt to ‘push through’ then you’ll suffer for it. Your symptoms are likely to last for longer and may get worse.
My experience: My level of fatigue varies greatly from perfectly normal when I’m well to not far from unconscious when I’m at my worst. This is not just tiredness or exhaustion or ‘I’ve been up for three days straight’. It’s more like zombification, except zombies have more life in them. When I’m severely affected I’m one breath away from comatose. i.e. I might wake up before midday and manage to get up but basically I’m asleep for most of the day, it’s near-impossible to wake me and if you manage it I’ll be asleep again – deeply asleep – in seconds. I’ve read about other people struggling to get downstairs or wash their hair. . . I’m fighting to persuade myself to get out of bed to the loo. I may literally spend a day asleep, waking only a few times to stagger to the bathroom and back.
It’s not always this bad though, that’s only my worst times. My most common level of fatigue these days is up by 10/11am, sleep for some of the afternoon, and in bed asleep by 8.30/9pm. (Again, when I’m suffering an episode, not while I’m well)
My tip: get to know your condition, your warning signs, and as hard as it is (for both you and those around you) it really is better to rest when you need to rather than trying to keep going and then collapse completely.