In my previous post ‘A Pain in the Arts’, I wrote about how chronic pain interferes with creativity. The chronic pain sufferer is tired. All. The. Time. When good days dawn you want to make the most of them. On my own good days I want to write.
CRPS chronic pain and writing
I’ve had contact with another CRPS sufferer who wants to write when he feels well enough. We know we have to pace ourselves. There isn’t enough energy to go round all the simple, everyday tasks that we previously undertook without a second thought.
I don’t beat myself up about not being able to do everything I’d like to. So I take it as a measure of success that this year I’ve published two books: my third novel and a second collection of short stories. I work at a much slower pace than I used to. Pain relief medication sometimes dulls the ache but makes me feel groggy.
If you’re reading this as a sufferer of CRPS or some other chronic pain illness you don’t need me to explain the myriad ways it affects you. How can you describe to others what it’s like?
All in all it’s TIRING.
2017 – my fourth year of CRPS
This year has been worse than last. I’m disappointed that even during warm weather I sometimes feel knocked out. I have cyclical bouts of vomiting. The following is taken from the article: The Spread of Complex Regional Pain Syndrome (CRPS) by H. Hooshmand M.D and Eric M. Phillips -Neurological Associates Pain Management Centre, Vero Beach Florida.
INTERNAL ORGAN INVOLVEMENT
CRPS invariably involves the internal organs. Usually the skin surface is cold at the expense of increased circulation to the internal organs. This increased circulation can cause osteoporosis, fractures of bone, abdominal cramps and diarrhea, disturbance of absorption of foods with resultant weight loss, water retention with aggravation of premenstrual headaches and depression, persistent nausea and vomiting, as well as severe vascular headaches mistaken for “cluster headache”.
In addition, CRPS can cause the complication of intractable hypertension which responds best to alpha I blockers (Dibenzyline, Hytrin, or Clonodine). CRPS can cause attacks of irregular or fast heart beat, chest pain, coronary artery spasm (angina), as well as disturbance of function of other internal organs. A few examples are frequency and urgency of urination, respiratory disturbance such as dyspnea and apneic attacks, and attacks of severe abdominal pain.
Planning your day
This morning I was woken by pain at 4.30am. Yesterday it was 5 am. The day before 4am. I get up, make a drink and take medication. When the pain eases I use those hours in the early morning to write, research or edit what I wrote last week.
When everybody else is up and about I start on household tasks you can’t do at 4am or you’d wake up the neighbours. There’s no wonder I often don’t feel able to do much more at all in the afternoon.
I can’t commit to definite arrangements. I can’t always agree to be at a certain place at a certain time. People must understand if I don’t make it it’s because I’ve gone back to bed. So I don’t commit to joining groups and clubs. I opted out of the choir I joined until I’m in a good phase again. (See, I’m still hopeful.) I don’t like letting people down.
I’m a member of various social media pages and that works fine because I can join in with discussions at any time. When it’s 4am. here there’ll still be somebody in Denver, Colorado with something to say, or Florida or California. They don’t know I’m sitting downstairs in my pyjamas quietly waiting for the meds to kick in.
Authors put a lot of effort into marketing their work
Unfortunately I don’t. My energy is carefully apportioned. I’d love to build a band of faithful followers of my novels, send out newsletters, join book blog tours and the like. I know improved sales of my books isn’t going to happen by some lucky happenstance.
But I still want to write. Maybe when all my ideas have dried up I’ll find the time and energy to work on marketing but at present I can’t do both. So be it. May we all have a low pain day.
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