How I wrote a novel with Chronic Fatigue Syndrome (CFS)

Firstly, let me just say, I doubt any one person ends up experiencing Chronic Fatigue Syndrome (CFS) exactly like another. There are people who can work through the symptoms, others who are bedridden and still other who cannot look at a screen, or book, because the stimulus is too much for their system to handle.

My CFS journey is not over, and has been complicated with further illness, but years ago,when it was still all new to me, I tried working through it and when that failed, I went home and started writing. When I wrote my young adult fantasy series I was fairly able bodied and a lot clearer mentally than I am these days.

Still, while I had patches of great clarity, I had physical limitations that caused me great distress and angst, especially when I compared them to the better times.

CFS is not just about being tired all the time. It is physically gruelling, with headaches or migraines, fuzzy headedness (yes, that is now a word!), nausea and a crushing exhaustion that could get so bad, I wouldn’t lift my arms. Those days, and moments, I didn’t do any writing…

I’ve never been a natural planner when I write. Words either flowed or they didn’t. In some creative circles, this is called affectionately a ‘pantser’ – flying by the seat of your pants. Thank you for letting me know, Nick Stephenson and Joe Nassise through your excellent videos on writing! I was the opposite of my creative cousins, the planners.

I began the first book, The Candlestick Dragon, in grand pantser style, writing twenty odd pages with my hero as a five year old before the entire thing fell apart because  I needed

him to take a stronger role and save the day fighting many evils and while five year olds can be feisty, they are just too little to get the job done.

So I had to scrap all that mental work and start again, all the while trying to cope with limited hours of functionality.

You see, while I wasn’t planning the novel, I had to plan my days to the hour/minute so I could cope. If I wasn’t at my desk by 9.30 am, I would miss my moment. And I only had so many!

After midday, the brain would be enveloped in fog, my ability to concentrate would dissolve and I would lie down, as my body became increasingly like lead. Around 4.30/5 pm I would resurface for a few hours, able to potter around and do small tasks that didn’t take too much concentration or physical ability. There was no chance to add to my story until the next day. If indeed, it would be possible then, either.

The thing with some of these illnesses that no one seems to know much about, is that symptoms can wax and wane, and what I could do one day, I couldn’t do the next.

So I gave myself some really strong advice: Write every second you can, because you’ll never know when the next ‘second’ may come along.

I felt as though I was in a race against the clock. I’d plonk myself down in front of the laptop, and bolt. Typing as fast as I could for as long as I could, without pausing. I was afraid that if I stopped, that would prove to be the end of that day’s word count. Sometimes it was 600 words, sometimes 6000. The only thing I would do, would be get up to stretch/walk to limit the physical discomfort. Then back I’d go.

The further I went into the new world I was creating, and the worse the CFS became, the more I strayed from the flow. Suddenly I found I had to write things down. Little notes started to be scattered across my desk. ‘Nilofar is dark green and has red eyes’, ‘Daniel wears glasses’ or ‘Laningrin is a ranger and is called Lan for short’. While I wasn’t a planner, I was no longer just a pantser!

I had a file!!

Notes, points, ideas of what might happen were suddenly springing up all over the place, as it all had to be written down or it became lost in my mind somewhere, never to be seen again. In fact, going back over the hastily scribbled notes, I can see where I’ve doubled up. I have two or three paragraphs sprinkled through the file describing how certain characters look or act. So not only was I forgetting things, I was forgetting I’d already written myself a reminder!

The race not just about how to physically manage the typing, anymore. It was a race against diminishing mental capacity too. A struggle to hold my characters in my mind. Characters I loved and had teased into existence in the first place.

So, how did the total of six novels finally come into being?

Inch thick files, repetitive files, agonising hours of trying to think clearly enough to focus on how to get them in to and out of, adventures. And a determination to not give up, even when all I wanted to do was cry. Then, of course, came the time when I was bedridden myself, and nothing was done. But that is another story.

The thing about CFS as I experienced it before that though, was if I studied my patterns of exhaustion and capitalised on the moments when mental clarity combined with physical ability, I could get some things done. Alright, not much and certainly not to the extent that is possible for able bodied healthy people, but I wasn’t grading myself, I was simply trying to achieve something. Anything!

I always said to myself – I’d much rather crawl towards the goal (end of novel, publication) then not. Because even if it is only at a crawl, at it’s movement and some time in the future I will look back and say ‘I did that’. Or I can look back at nothing. So movement forwards is always the goal. With my very own Nilofar dragon as company. (Even though he hides in trees). Forwards. As much as possible.

One word at a time.

Hopefully, with better notes…