Is it Worth it? The Answer is Yes.
It’s hard, but it’s worth it.
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Hello Red Cabbage Head readers, (Cabbage Reds?)
How is the world with my fellow chronics? For the new people I have ME (myalgic encephalomyelitis) often know as CFS (chronic fatigue syndrome) a mane I disagree with and dislike greatly as it doesn’t encompass in any way all that ME is. I include it purely as that’s what a lot of people know. I’ve been living with this disease for 15+ years and I’ve tried an awful lot of things, to help, 99% of which haven’t.
Since my last post I have fallen into the doldrums. It’s a sorry state of mind, but I shake hands with it many a time with this illness. The grief cycle comes round again and again, especially when I have had to face up to my own physical deterioration. My painful hip, though now cured (thanks Mr Physio), and the advice I was given to make sure it doesn’t happen again has made me slow down even more. Using the Visible app has now given me a stark and visible (lol) reminder of how little I can actually do every day - basically bugger all. So, I visited the doldrums for a brief while. And I think my visit is coming to an end.
I have to walk very slowly about the house, using a stick. I have to climb the stairs very slowly. I have to sit to clean my teeth and wash my face. I have to regulate, to monitor, to live a slow life - a very slow life. I don’t want a slow life. I haven’t been out of the house for a week. I don’t want a slow life. I get up each day, dress, and go sit on the sofa, then eventually I go back to bed. That’s my life.
But . . . A nice man is bringing me some electric wheelchairs to try out at the end of the week. Hopefully I will be able to go out and not feel like I’m dying doing so.
After having a few days when I felt really awful having not done anything to deserve it, I did begin to wonder if it’s worth it. I used to be quite bubbly, to laugh and joke, to skip, to climb, to spin, to enjoy life and what it had to offer. I was a perfectionist doer. Not being a doer is hard. But it IS worth it. I can manage with a slow life. I can make my life easier even if I have to deplete my savings account to do so. So roll on Friday and hopefully a trip out to the moors to see how these power wheelchairs stand up to the terrain. I’ll let you know how it goes. It might be quite exciting.
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Hooray for power chairs! Hopefully it will be all you hope, and get you outdoors. Can’t wait for updates 🤗
Its worth it just to feel less trapped, more possibility, a tiny breath of autonomy as you pootle along. When I was injured, a hired mobility scooter for a few months changed my world. Now my ME/CFS has me wishing I had it for the bad days. I’m not sure why we often believe mobility aids we don’t use every day are ‘indulgent’ but a lot of us seem to. Good luck!