What CFS/ME ~really~ feels like

Imagine every morning you wake up and for half an hour to an hour you feel normal, then its as if someone drapes a heavy cloak over your shoulders that you have to carry round with you all day. That’s what living with CFS/ME feels like for me. Some days the cloak slips a bit and I can feel energetic, almost normal again, but these brief interludes only come occasionally and leave me remembering what it was like before I was ill.

One of the things I find hardest about this illness is its cyclical nature, some days I can be active and busy all day without my symptoms becoming overwhelming, however other days it is tiring to sit up and walking for five minutes requires a lie down after. Obviously these are extremes but they still form either end of a scale that my CFS/ME seems to bounce around.

In terms of symptoms, they break down into physical and mental. My physical symptoms obviously begin with extreme tiredness and include joint and back pain, sensitivity to light and sound, sore throat and headaches. When you hear of CFS/ME you wouldn’t expect to have such random symptoms. My mental symptoms mainly revolve around speech, forming a sentence and thinking of words is such a challenge when I am fatigued. Before falling ill my memory was particularly sharp, I have a slight photographic memory and always found it easy to memorise things at the last minute. Unfortunately since CFS/ME has set in, I struggle to remember the simplest things and its a frustration I never thought I would struggle with.

One of the biggest surprises for me when it comes to CFS/ME is how different it feels day to day and the frustration of making plans then being too unwell to actually carry them through. No matter how understanding people are it’s impossible to not feel like you’re letting them down.

In my next post I’m going to write about acceptance and how important it is when managing this illness.

See you next time pals x

Author: Ells Jayne

A 21 year old suffering from CFS/ME whilst studying at university in Brighton. Follow my story as I write about living with an invisible illness whilst studying and trying to launch a career.

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