ME / CFS Awareness: Making the invisible visible.

12 May

awareness profile pic

Imagine if:

  • You wake up sluggish, your head is foggy, your eyes feel hot from tiredness and your arms feel pulled down by non-existent weights.
  • You wake up drenched in sweat, shivering, unable to get warm but all day your body temperature will swing from uncomfortably hot to cold, with no way of controlling it.
  • You take 5 prescription medicines and 8 vitamin / energy supplements on a daily basis.
  • You have to plan showering as an activity.
  • You can’t dry your own hair because it makes your arms hurt too much.
  • You have to rest every two hours to stop the fatigue from overwhelming you.
  • You have to pace any and all activities, however minor they may seem to someone else, in 20 minute blocks.
  • You cannot work and are dependent on others for nearly everything in your life.
  • You cannot cook for yourself because preparing food takes too much energy and makes your body hurt.
  • You cannot eat gluten, dairy, sugar, or alcohol as your body can’t tolerate them.
  • A 20 minute chat with a friend leaves you exhausted and with a sore throat.
  • Any outings are few and far between, involve you being in a wheelchair, and have to be as close to home as possible.
  • And after any outing you have to plan a day or two of no activity to recover.
  • As hard as you try, it’s impossible to avoid symptom flare-ups, unless you do nothing. And that is not a life.
  • You feel like your body hates you, subjecting you to blinding headaches, crushing fatigue, just some kind of constant pain all day, every day.
  • Writing this blog post makes your brain hurt because of brain fog and your arms ache from typing.
  • There is no cure.

 I try to be positive as much as possible in my daily life and on this blog. But this is what life is like for me and thousands of others in the UK living with ME / CFS, with no real cure in sight. This is my reality and really there’s very little to be positive about. Writing this post has brought me to tears. I haven’t written this to depress anyone but I feel it’s important to face this reality and share what living with ME/CFS is really like.

I would like to go out and fundraise for International ME/CFS and FM Awareness Day but since I can’t, I want to contribute to raising awareness of this horrible illness in my own small way.


3 Responses to “ME / CFS Awareness: Making the invisible visible.”

  1. Dead Men Don't Snore May 12, 2013 at 10:19 am #

    It is the small things like not being able to dry your own hair that you would never imagine before you get sick but that make such a big difference to your quality of life. I had long hair down past my waist when I was healthy but have to keep it boyishly short now or pay a carer to come in every morning and brush it for me.

    • myjourneythrume May 13, 2013 at 8:08 am #

      Wow you had really long hair! Mine’s just past my shoulders. Scraped back pony tail is my look most days. Doesn’t really matter what I look like given I don’t go out very much! You’re right it’s definitely the little things like hair drying that are the most frustrating. They’re the ones that ‘healthy’ people don’t even give a second thought to. That’s why I included them in my post, trying to raise awareness in my own little way.


  1. ME / CFS: I am what invisible illness looks like. | my journey thru M.E. - May 24, 2013

    […] of what I go through on a daily basis is not seen by even my closest friends. After I published my recent post listing some of the ways ME / CFS impacts me (e.g. not being able to dry my own hair for it making […]

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