The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted me to want to write more about it. I’ve lost count of how many times I’ve written in my blog that ME is not ‘feeling tired’, yet some people still believe this to be the case.
I’ve had ME since 2014, and I had thirty four healthy years before I had ME. During those thirty four years, sometimes I felt tired, sometimes I felt absolutely shattered, and I remember what it feels like. I think people forget this, that I haven’t always had ME, that I used to be healthy, and like everyone, I experienced feeling tired from time to time. I know, with absolute certainty, that what I feel now, is not the same. My pre-ME tiredness was usually a result of a really busy and demanding day, a bout of insomnia, after a late night out with little sleep, or jet lag. I would feel sleepy, I would yawn, sometimes I would struggle to keep my eyes open, I’d find myself dropping off on the bus home from work, waking up every time my head fell forward like a nodding dog.
Since having ME, I don’t yawn anymore than I used to, and I rarely feel so tired that I can’t keep my eyes open. I actually find myself missing that feeling of being tired after a really busy and productive day. That wonderful and satisfying feeling of falling into a cosy bed, finally being able to lie down, sleep and recharge. I don’t have that anymore, because ME is not synonymous with sleeping. When I go to bed I simply hope that I’ll actually get some sleep, and that it won’t be too disturbed, I know it won’t be quality sleep, and I know that I won’t wake up feeling refreshed.
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