What do you do when the number of people in your household not dealing with a debilitating chronic illness drops to zero? If you’re anything like me, the answer is Read A Book. The book in this case was The Fatigue Book by Lydia Rolley, who not only worked for many years in an NHS fatigue clinic, but had previously recovered from CFS herself, i.e. She Knows What She’s Talking About.
We decided to launch a Recovery Plan based on her advice. The key principles are simple – flatten out the rollercoaster of energy highs and lows by setting a baseline of activity which you can do on good days and bad without wearing yourself out. Not unlike Goldilocks, you’re looking for not too much and not too little. As your energy improves, you can gradually increase the baseline.
But first we had to have our house mostly replumbed and rewired. (Long story; take my advice and be highly suspicious of any hissing noises in or near your walls.) In mid-May last year, we were finally able to begin resting. Which was absolute bliss, as long as you didn’t look too closely – or in some cases at all – at all the things which had to be set aside until baselines improved. (Set aside in the metaphorical sense. One cannot, alas, actually set aside an unvacuumed carpet, nor a thickly dustcoated windowsill.)
It has therefore been a year since we began, and results have been mixed. Speaking for myself, I saw great improvement in the first six months, followed by a decline. Was I unknowingly overdoing it? Had I developed a nutritional deficiency of some sort? Was the weather debilitating? Was I consuming too much mental or emotional energy? The investigation continues.
So what, you may ask, have I been doing all these months, beside lying on the sofa and reading (and attending to the necessary functionalities of life such as laundry and dishes)? It’s good to have hobbies and interests, so one doesn’t just sit inert for hour after hour, day after day, staring at a fixed point – with or without a book.
At first I tried calligraphy as a pastime, producing the piece you see above, but I discovered it was not easy to do while reclining on a sofa. There was, however, plenty of handwork to do. Lots of people in and about our church were having babies, and I knitted a toy for each newborn, as is my custom. (Patterns by Sarah Keen.)
I also knitted a number of shawls for a local charity, using donated yarn. Later I crocheted a shawl for variety. The patterns are a) made up with an Old Shale edging; b) pi shawl with a crocheted edging; c) Boneyard by Stephen West; and d) Lost in Time by Johanna Lindahl.
As spring came on, I had enough energy to get in to the garden, which was very exciting after months, nay, years, of seeing it slowly succumb to pernicious weeds. Starting by clearing a space for a raised vegetable bed near the house, I slowly dug my way out into the garden, breaking up the heavy soil and removing immense masses of invasive (inedible) mint root. To hold the recaptured ground, I sowed a mixture of green manures – clovers to capture nitrogen, daikon radish to break up the soil, and so on, as well as a wildflower mix. The flowers did well; the daikon radish…did its best.
Alas, as the energy I had in spring began to wane, the division between the weed-infested ground and the reclaimed area of the garden slowly shrank away, and finally disappeared.
I was still able to knit, however, and obsessively knit a small plethora of baby cardigans (for the aforementioned charity) as I lay on my sofa. They’re very addictive, these little top-down cardigans. The patterns are the Garter Yoke Baby Cardi by Jennifer Hoel (the ones with garter yokes, as one might suspect), and Beyond Puerperium by Kelly van Niekerk (the ones with buttons down the side).
We also had a go at adopting a kitten to cheer the declining years of our elderly cat. In hindsight, this may have been unwise. The shy but lovely younger cat (she wasn’t a kitten, as it turned out) had a rather fraught season of vet visits and ill health (worms followed by extensive diarrhoea), followed by another fraught season after her slow and careful introduction to our senior cat, when we found that she (the younger cat) was unable to cope with the presence of another cat. Despite our best efforts, violence ensued, and after a rather stressful search for a suitable home, we were able to find her a family who would keep her in the manner to which she intended to be accustomed.
As the year drew to a close, I also finished a garment which I’d been working on for – if you can believe it – three years. It’s the Vest for Charles designed by Kathleen Dames, and using very dark wool may not have been my wisest moment for a comfort-zone-busting knit. But the finished garment does look good. At last. (A hearty thanks to the Caped Gooseberry for not changing size in three years.)
Calligraphy wasn’t the only pastime I took up at the beginning of our Recovery Plan, and the other has proved a little more sofa-friendly, and is continuing in a small way. I thought it would be fun to learn to draw, and started with a couple of purely imaginary fish on the first day of the Recovery Plan.
I’ve learned that it’s easier to draw something when you can see it, and that the cat objects to being drawn as much as she does to being photographed. The blue cat above started out as a drawing from life, and continued as a drawing from imagination. (For the avoidance of doubt; no, I do not know any pirate jellyfish to model for me in real life.)
So that’s what I’ve been doing for the last year. I’ve heard it said that two years is about average for a recovery from CFS, so I’m not surprised it’s taking a while – though I would have liked to have kept along the trajectory I had to begin with!
What does the next year of the Recovery Plan hold? More rest, more handwork, more blog posts. Hopefully more gardening, and maybe even more writing. As Kobayashi Issa wrote,
O Snail,
Climb Mount Fuji
But slowly, slowly!