I’m outside in. That is to say I find myself constantly on the outside of things yet I spend almost all my days hidden from the world inside my house.
The illness I have swallows me whole and leaves me a stranger missing from my own life.
I have an illness where doing ordinary things like to walk around a supermarket, take a shower or cook a meal leaves me crushed with exhaustion, pulsing with pain, my words and thoughts lost in a thick fog and with many other debilitating symptoms.
Mine is not the kind of disability you can fight by trying harder, getting active or with the right kind of motivation. Motivation & will power is not something I lack.
Pushing past my limits makes me sicker and these incapacitating effects can last for days or even years. My will is strong but my body is left erratic and weak by my illness.
My losses are many. I’ve lost my job, my income, my freedom, my status, my independence, my future, my security, my place in the world. Possibilities are few and those I have left must be carefully planned and budgeted for so that the tiny amount of energy & fragile stability I do have can be maintained.
I am estranged from the life that goes on around me.
I am on the edges, the fringes of the world so many take for granted. I am left behind. I am forced through my illness to spend 98% of my time divided between the sofa and bed. I am squashed into a small life, squeezed daily by the pain and exhaustion with a brain and body pressed into a place I never chose. My only glimpse to the outside world through the internet, my family, friends and tv.
I remain positive. I remain hopeful of recovery. I make the most of the life that is possible within the constraints of my illness.
But with ME/CFS I am always on the outside looking in … or am I on the inside looking out?
This is a post for International ME/CFS and Fibromyalgia Awareness Day on 12th May. I am also responsible for collating a list of blog posts for awareness each May at http://meaware.wordpress.com