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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 doesnโt encompass in any way all that ME is. I include it purely as thatโs what a lot of people know. Iโve been living with this disease for 15+ years and Iโve tried an awful lot of things, to help, 99% of which havenโt.
Since my last post I have fallen into the doldrums. Itโs 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 doesnโt 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 donโt want a slow life. I havenโt been out of the house for a week. I donโt want a slow life. I get up each day, dress, and go sit on the sofa, then eventually I go back to bed. Thatโs 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 Iโm 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 itโs 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. Iโll let you know how it goes. It might be quite exciting.
If you have enjoyed my ramblings Iโd love for you to click the โค๏ธ. It pleases the social algorithm, lets others know thereโs something interesting here, as well as letting me know you liked it and giving me a little virtual hug. Without virtual hugs I have been know to get sad ๐. Shares are good too and a comment buoys me up even more ๐ A comment of what you liked, what you didnโt etc would be most gratefully appreciated.
Hooray for power chairs! Hopefully it will be all you hope, and get you outdoors. Canโt wait for updates ๐ค
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. Iโm not sure why we often believe mobility aids we donโt use every day are โindulgentโ but a lot of us seem to. Good luck!