Tuesday, June 25, 2013

Given my limitations, do I want to write? | liebjabberings


To get the most writing time out of a body that has Chronic Fatigue Syndrome, I have to beat the odds.

I have to find the time to write – and ensure that the brain is as 'on' as it gets during that time.

...  The system falls apart the minute I have to leave the house: each 'out' usually costs the equivalent of two usable periods IF I do it very carefully, and far more (into days worth of staring at the wall) if I'm careless – or simply unlucky.

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As I observed some years ago, the books about CFS are written by married people, who tell a frightening story, but fail to communicate how bad it is for the 3/4 of patients whose marriages ended as a result of their illness:

"Every bit of energy I had was consumed with essential tasks: cooking, laundry, dishes -- things that the book-writers among us don't have to deal with because they have a healthy person in residence to take care of the chores."    http://cfs-facts.blogspot.com/2007/03/telling-half-story-with-twice-people.html

I'm going to lose a lot of writing days because I'm the one responsible for running the errands.  Like the blogger above, it costs me the rest of that day and sometimes the whole next day every time I run out to buy essentials (like food and medicine).

Everything in life is a weighing calculus -- if I have to do editing work, will I be able to fix dinner?  It does no good to go to the farmers market to pick up organic produce if it's going to rot in the front hallway because I'm too exhausted from shopping for it to carry it to the fridge at the back of the house and put it away, or if it's going to rot in the fridge because I'm working enough hours to pay the bills that I'm relying on convenience food that can just be ripped open and eaten (or, on a good day, ripped open and microwaved).  If I've had to work too many hours in one day to have it in me to do the peeling and chopping to eat organic, it's important to eat, even if it's processed food -- even PopTarts have some nutrition value. 

Safeway delivers, the farmers market and health food store do not.  I did try a farm-fresh delivery service, but they fill the box with the things they want to get rid of, not with what you can reasonably use in a week -- I'd find myself with several bunches of herbs, but almost no vegetables to cook with them.  Or a box that was 90% fruit, but nothing for dinner.  Or enough potatoes to feed a family of ten, but nothing to make a cold salad on a 108-degree day.  I'd get the box on Tuesday and have to go to farmers market on Wednesday to buy the things that weren't delivered ... that certainly wasn't "convenience" and I could get three or four times as much for my hard-earned money if I went to the farmers market myself (as well as getting things in the proportions I would use rather than throwing away food that went bad before I could use as much of a single item as they'd sent), so I couldn't find any reason to continue the service.

1 comment:

Anonymous said...

Thanks for the link - I was a bit startled (you're one of the first).

I agree with you that CFS is a silly name - but we're not doing much better: ME makes for weird sentences (and arguments about encephalomyelitis - when there is no inflammation of the spinal cord vs. emcephalopathy - Dr. Lapp), CFIDS is not much used, and ME/CFS or CFS/ME are just clumsy.

So our illness acronym is as much a problem as our illness.