Having lived with ME/CFS/CFIDS for 23 years now, and having lost to it so many of the things that I valued about myself: hiking, research physics, sightseeing and travel, among others, but especially having a quick mind, that you’d think I wouldn’t want additional burdens. True, daily self-care (now that the kids are gone), and keeping some kind of handle on house and paperwork, easily seems to take all that I have left, which is roughly the equivalent of three hours worth of usable energy. For a 16-to-18 hour day.
However, too often I talk to people with CFS and find that they have let ‘what has to be done’ take ALL their time and energy, and I would like to advocate for something different.
When I ask the question ‘what do you do for YOU?’ the response too often is a blank stare. And a sense of hopelessness. And a recitation of all the current physical and mental problems being lived with/dealt with/suffered.
My answer? I have chosen to spend part of my ‘good’ time, every day, to WRITE. And not just a blog or a journal or hidden notebooks. I’m writing my second completed novel – and I’m aiming for publication as soon as Pride’s Children is finished.
In 1995 I started tackling this question for myself. A huge reader, I had always assumed I would eventually get around to writing: mysteries, science fiction, mainstream novels. Short stories. Plays. That was how I saw myself in retirement after a professional career, having the time – the inclination was always there – to discover my own stories and write them.
But then I got sick – sick and tired. And some days getting out of bed was overwhelming.
Somewhere along the way I made a discovery: I wasn’t going to get that much better. But I had learned enough about pacing and energy envelopes and resting – all the strategies we PWCs (persons with ME/CFS) use to stabilize ourselves and get the most life for our limited energy. The goal of barely surviving, making it through the day, of slowly chipping away at the constantly recurring problems, was incredibly depressing. I – the core me that was inside this ailing body and slow mind – needed more, and I needed it soon, before I became this puddle of a person with problems.
I did what I am advocating everyone do: I revisited my original life goals – family, career, hobbies, the things I wanted to do with my life – and I defined these goals as ATTAINABLE. I wasn’t sure how, but I would manage some kind of career. The method wasn’t obvious, but I had kids, and by God we were going to all be a family. And somehow or other I would achieve my goal of being a writer.
As I approach the age at which most people retire, I have spent more of my adult life in illness than I spent in acquiring the requisite Ph. D., and then working. I have not managed to go back to work – physics and scientific programming are still beyond my capabilities – but somehow or other I found the energy to pass on the science and the math by homeschooling three kids into college in the sciences. In fact, I tell people I am an accidental homeschooler: I could use those three hours every day to cope with schools – or I could teach my kids directly, from the remainders of that thorough education I had acquired.
Had the kids gone to school, the three hours of energy would just have about covered: 1) getting the kids to a schoolbus in the morning with lunch or lunch money (schools want them there at THE SAME TIME every day – a different time for each kid – I know because we tried it one year), 2) dealing with the kids when they come home from school, tired and with homework and instructions from more and more teachers each year, 3) coping with school requirements, teacher/parent conferences, activities at the school, and the absolutely endless paperwork, 4) knowing how much of the time of children is wasted in schools and how often ‘getting’ whatever the teacher is teaching has the reward of waiting while the same material is taught six more times for those who haven’t gotten it yet, 5) trying with the tiny remainder from that energy to supplement whatever the school wasn’t doing.
Instead, the three hours of energy went into direct one-on-one, -two, or -three instruction where needed; supervision of projects such as science fair; and the bi-weekly trip to the library to get enough books for a brood of voracious readers to survive the next two weeks.
So that covered career and family. But it didn’t cover what I wanted to do. For me. I knew from the beginning time would be tight in my busy life. But I had always assumed there would be SOME fraction of time for me. CFS seemed to have taken all of it; I was always behind, not just in what I would have liked to do, but in what I would consider the bare essentials: food, a house that wouldn’t be condemned by the health department, routine well-care, time for family and friends. All of this done with a brain and body that could never be counted on, that could do crises only at the cost of days of recovery afterward.
What was my answer? My first step was to admit I was never going to catch up, that I will never be able to achieve my previous standards for myself, EVEN IF I use up ALL my available energy.
The next steps involved revising all my expectations, and letting go of the many unrealistic ones. Finding where my ‘envelope edges’ were. Learning to pace myself, and get rest throughout the day, and which foods seemed to make things worse.
And the last – and most important – step was to believe that, however much energy I have, SOME of it is MINE, just mine, to achieve what I want to.
Once I went there, and put me and what I wanted as one of my top priorities, up there with food and shelter and love and medical care, above the social needs of friends and family, I had started. This priority is not ‘for when everything else is done’ – ie, I don’t get the dregs of my life. I started finding a way to set aside some of my precious GOOD time for writing. Every possible day. It is not a reward for good behavior, or for trying my utmost. It is essential to my survival.
Then I had to get as smart at using that time and filling that priority as I was learning to be with everything else. I can’t just go at it when I have the time – and hope I’ll remember where I was, and what came next, and make a bit of progress toward my writing goal. I tried that – it didn’t work. Mostly because each little piece of time then gets used to figure out where I was – again. It is actually a recipe for making the despair worse: “I tried making some time for my writing and now I am SURE I can’t do it.” Nope – I had to be smarter. I had to spend some good time PLANNING and ORGANIZING: this novel, done in dribs and drabs, will take me far longer than anyone else. When I’m feeling sorry for myself, I read about Christy Brown – who wrote My Left Foot with a couple usable toes over a period of years. He didn’t have CFS – but his family thought he was severely uneducable and only something to be cared for, until he found a crayon and made them listen.
I take my time planning – and I know I might only have the equivalent of 15 minutes worth of my pre-CFS self at a time.
Discouraged? I ask myself: “Where will I be in five years? In ten years?” Those years pass more quickly than I like – and the answer is: “With five or ten years worth of tiny bits – and the novel in its final revision.” Instead of five or ten years older and more discouraged.
We get one life – and someone or something has thrown a huge monkey wrench into mine. Nothing I do seems to make it a lot better. Many things CAN make it a little better, if I do them: regular habits are my friends. I have refined my time use and energy consumption to get as much as I can out of my life – and it is still at best 30% of a usable life, a lot less if I overdo it. I can’t change that – so I accept it and deal with it. But I don’t give up my goals – I just realize they will take longer.
I can’t do what aspiring writers are told to do: ‘Get up a little earlier to get some writing time in.’ ‘Write late at night instead of TV.’ – that’s a joke, as whatever usable energy I had is long gone, TV is the best I can manage, and my remaining wisps of energy go into making the decision to go to bed.
I can’t ‘Go off to a mountain retreat for a week and finish a draft, working non-stop only on writing.’ I wish!
But I CAN keep that priority up there with food. And showers (OK – I shower less often because it sucks up energy). I CAN put my writing into the first usable piece of brain time that comes along. I CAN give up low-energy surfing the net. Or laundry one more day. Or cleaning the kitchen counters for a little longer.
And over many years I have composed a mainstream novel of a third of a million words (can you say trilogy?) – after discarding at least twice that many. So? So it may take me two more years to get this ‘final’ draft done. So? So I can look back to when this particular story came to me in 2000 – and I am a heck of a lot closer to the end of it now than I was then.
Like most people, I had to learn the craft of writing. But taking classes (I tried), getting coaching (I tried), sharing in a critique group (I tried), all took more out of me than they put back. I do have a writing partner – when we can get together (and now she is a very good friend. but we rarely share writing any more, due to LIFE).
What ended up working for me was: books on writing. Relatively inexpensive – and always available. For example: $20 spent on a book on point of view gave me a coherent textbook that covered all kinds of points of view and evaluated why you would use one or another, with SAMPLES, often from books I had read. I consider these books, many of them trade paperbacks from Writer’s Digest Books, my writing teachers. They are scribbled in and underlined. I can consult my teachers any time of day or night—when I have energy, when I need the help.
To gain exposure to potential readers DURING the writing process, I started this blog, where I write about writing, life, and CFS – and I post a scene a week of my novel-in-progress, Pride’s Children (whose main character has CFS – write what you know).
But the very most important part is that, every morning, as soon as I can gather what brains I have, I block the internet with a little program called Freedom (on my Mac), and I give myself permission to write for up to two hours. Then I take First Nap, and write for up to two more.Some days this process takes all day. The rest of life comes after Second Nap – but I get MY share FIRST.
Putting myself first, and blocking everything else tells my brain it can relax and just tell stories – and it works. I don’t care so much that I’m SLOW, and there are lots and lots of bad days.
I look BACKWARD to see progress – and it’s HUGE.
I look FORWARD and see progress – and HOPE.
So that’s how I answer my own question.