Chronic fatigue is an illness that fluctuates a lot. To try and give an idea of what that can be like, below is a reflection from Liz on how frustrated she can feel on one of her hard days.
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I hate this! A life lived cautiously; checking the watch, calculating energy, being on the safe side, taking it easy. I exist on the sofa, in bed, rooted to a chair, limited by these four walls. When I venture outside though I realise it is my body I am trapped in. This aching, sickly, head-in-a-spin, could-be-knocked-over-by-a-feather body that feels like no body at all. I pace out a short walk then return to my cocoon.
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I hate this! A life lived cautiously; checking the watch, calculating energy, being on the safe side, taking it easy. I exist on the sofa, in bed, rooted to a chair, limited by these four walls. When I venture outside though I realise it is my body I am trapped in. This aching, sickly, head-in-a-spin, could-be-knocked-over-by-a-feather body that feels like no body at all. I pace out a short walk then return to my cocoon.
I’m tired of my pale face, sad eyes, quivering hands and legs that feel like lead. I look at myself in the mirror and I wonder where I have gone, the old me I used to know. I wonder what others see when they look at me. Memories feel like dreams of someone else entirely; the girl who ran the 100 metres, who swam against waves, who climbed mountains on hot summer days. How can I get back to that girl? Can she ever be seen again? She’s me but not me.
The future is so uncertain I don’t like to envisage it. Instead I take a day at a time, but even then there are so many questions, so many fears. How many hours will I have to manage alone for? Will the time drag or fly? Can I cope and what happens if I can’t? What if, what if? I want to know what it means to LIVE again; to lose myself in the day, the mood, sensations of freedom and pleasure, extravagance, peace. To run, to swim, to climb – this is my dream. It doesn’t feel like much.