In this entry of the Patient Voice, Anne shares how her love of quilting, and carving out just a few minutes at her longarm frame, brought her ten minutes in living color – a sense of normalcy and bliss.
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Ten Minutes in Living Color
This week I had a wisdom tooth out – tricky without ME/CFS and Fibro, but an absolute crash with it. Two days later I also had to go to the national Dental Hospital, which is a three hour round trip. The professionals in both instances were compassion itself and I am deeply grateful to them for that, but it is still something that dramatically impacted my health.
This is the reality of a life with ME/CFS and Fibromyalgia. It’s hard. And things that are already hard can be bone-crushing and completely debilitating for those of us living life with these diseases.
But I want to say that I’m proud of myself and have little internal skips of joy, because on the day of the dental hospital visit I managed about 10 minutes of adjusting my longarm quilting frame so that I can load my next quilt. A longarm frame is basically a big frame with a sewing machine mounted on it that allows lovely free movement when sewing the three layers of a quilt together. I got it second hand (you’d need a small mortgage or a big salary to buy one new – I do dream).
For those ten minutes I wasn’t sick, I was:
- In color – seeing in my mind the quilt top that’s made and is ready for the frame
- In math – figuring proportions and tensions for mounting the quilt so I can do the sewing
- In problem solving – how can I get a better quality stitch?
- In anticipation – of the pattern I will work over the quilt
- In sharing – the quilt is a gift for one of my sisters
Some days I can sew a couple of hours; sometimes it’s broken into ten minute spurts and then rest. There are other days when I can’t physically do any quilting at all; but I can think and dream about the next one.
There’s no glossing over ME/CFS, it sucks! No amount of “being in the now” or “mindfulness”, or “focus on the positive” changes the basic fact that ME/CFS is a severe and debilitating disease that has gripped my life and the lives of millions of others. I don’t know if I will recover, if I’ll get worse, or if I will just stay the same.
But I know that in that ten minutes, on that really hard day, it was bliss. And today, when I’m bed-bound, I still feel that bliss.
Tomorrow, or maybe the next day, I’ll load that quilt onto the frame and sew in ten minute spurts and do some serious smiling.
I hope that you find your ten minutes (or a lot more!) of bliss, too.