What does it feel like to live with ME/CFS?

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A fellow blogger asked the following question on Twitter; What does it feel like to have ME/CFS? This is my response;

I feel like I’m in a constant state of confusion – in a daze. It’s like I’m looking at my life through frosted glass.

I feel hungover and drunk at the same time. I feel like I haven’t slept for a week and I’ve just run a marathon. Everything hurts, it even hurts to think.

Pain and bone crunching fatigue are constant companions. I feel weak, heavy and exhausted. It feels like someone has removed all my blood and replaced it with lead. It feels like gravity is playing tricks with me.

My senses are heightened, yet I feel disconnected from reality.

It feels like there is a war raging inside my body. A battle I cannot control or win.

I feel like I’ve been poisoned, like someone has drugged me in my sleep. My skin prickles and crawls like there are a thousand tiny insects just under my skin.

It feels like my body is falling apart and I’m defenceless to stop it. It feels like my body is betraying me and shutting down.

I feel like I no longer belong to the world I once knew so well, but not just that, it feels like that world is now my enemy.

I feel like I’m hanging precariously off a cliff, desperately holding on by my fingertips, knowing that at any moment I could fall.

A life with ME/CFS is like a non-existence. I’m alive, yet not really living. My life is on hold – I’m in limbo. I miss so much about the person I used to be, and about my old life.

ME/CFS is relentless and unforgiving. It’s a devastating illness that steals lives.

I’m not saying any of this to get sympathy. I share my experiences to educate and to show other ME/CFS sufferers they are not alone. We deserve fair treatment. We deserve a chance of a future without pain.

Thank you for reading

If you would like to read the responses from other ME sufferers please head over to Not Just Tired blog.

How would you describe what it feels like to live with ME/CFS?

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

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  1. This is an excellent précis of the condition. Thank you. Add – being resigned to loneliness and being dismissed as odd. One reason why I do not mention it to most people. My husband just shrugs if I decline an activity and expects as much from me as he ever did. I have been clear about the pain. An involuntary yell escapes sometimes despite myself and it is only myself who is now insisting that I lie/sit down sometimes. I do not think that he has even looked up anything on the condition. A brief printout for partners, family and friends would be so useful.

    1. Richmond and Kingston ME Group website has a link to an ME Awareness leaflet that you share for free or print to hand out in person if you prefer.
      It is generally well received by PWME as a way of easily showing people what it’s like to have ME. It is written for the lay person, so there is no medical jargon used at all.
      If you go through and cross out anything that doesn’t apply to you and add anything extra that wasn’t mentioned, I believe it makes the whole thing more hard hitting.
      Gentle Hugs,

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