I was talking to another j pouch-ee yesterday and she said something that struck me as so true.
You wake up and think you could take over the world. Then you try to get up and your body says “no way, you are 90”
You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fibre of your being is suddenly being affected by gravity more than anything else.
It was the idea of your brain and body being disconnected in some way that really made me think. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.
The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of myself and my husband revolve around my illness. I feel guilt that my input to our business is so minimal. I think about how much I feel like a failure, that the physical work I do is dramatically lower than the amount I’d like to be doing.
I am disappointed that my recovery is so slow. I was told it takes around two years to fully recover from j pouch surgery and I know that my body has been through so much this year and I need to give myself a break. But I just wish I was back to ‘normal’, I would love to be full of energy and ready to kick some arse.
I would just like my body to listen to my mind. My mind is filled to bursting with ideas… It’s constantly whirring and I just wish I had the physical energy to fulfil just some of those ideas day to day.
There is a huge problem of a lack of understanding, people don’t understand and comment on chronic illness with a condescending and patronising tone that they somehow think is helpful. I was sent this chronic illness bingo sheet today by a friend and I think I could mark of every single one!!!
Chronic illness isn’t just a disease you have to deal with physically, it is mental, emotional and social. It can be an invisible illness that makes the sufferer feel isolated and can spark depression and anxiety.
I suppose today’s post is about speaking out, educating and sharing my experience in the hope that next time you, dear reader, are in contact with someone else with a chronic illness that you will be a little more open minded, a little more sensitive and a little more caring.
Crohns and Colitis Uk have produced an information sheet on IBD and fatigue, take a look for some official advice.
They also have a site about the studies going on right now, take a look here.
Love Sam x