5 months ago
“How can I leave CFS alone when it won’t leave me alone?” I say to the woman.
“Billygean,” she says. “Is that true? Has it not left you alone?”
She has iron-grey hair shot through with pretty blonde highlights, and kind eyes. Her living room is full of polished wood, floor-to-ceiling windows and a scotch decanter sits on a table at the back of a room, like something out of a Wilde play.
“Yes,” I say, without thinking. “I need lots of sleep sometimes… and I have to pace…”
“Is that true?”
I shrug, frowning as I look at the coffee table. The only thing on it is an extremely large, flat bowl. I smile, inwardly, as I think of mine and MindReader’s cluttered living room.
“It was true,” I say eventually.
“Well, at least last spring… summer,” I say, “as I definitely overdid things then…”
She looks pointedly out of the window, at the black sky, dark, already, at 4.30pm. “So a minimum of three months ago.”
“The thing that strikes me,” she says, “is that you can’t ever really take ‘time’ out of the equation.”
“So it’s about being reasonable isn’t it?” She makes a gesture she sometimes makes; of somebody treading a middle path, winding their way through the very centre of things.”So we don’t know what works and what doesn’t,” she says, “not really. So we do the best we can without being extreme or depriving ourselves.”
I smirk as I think of all the cakes I missed out on when I was gluten-free. All the embarrassment and the inconvenience and the worry. Giving gluten up on a mere presumption was not a reasonable thing to do. Deciding I had to meditate for an hour a day was not a reasonable thing to do, even if I was well for the duration of my meditation fling. I would probably have been well anyway; have been well since (and a lot less bored).
I think now of the pacing I do. Two days of activity, one day of rest. Religiously. I broke the rules in July and relapsed. But did I also break the rules at other times? Could that have been a coincidence? Would that even happen now anyway? July feels like a long time ago.
“So what would we do instead of two days on and a day off?”
I make a face. “I definitely do get some symptoms if I just do exactly as I please.”
“Right,” she nods. “But what if… what if your body needs a slower day every third day, but not a day that stops? And maybe your mind would enjoy that too?”
I feel like I have been living in a box and someone has just taken the walls down. I cannot imagine a life without pacing, even though, bizarrely, the point of pacing isn’t really to do what I do, but to aim to build up to a sustainable level of activity that I could do every day.
“So perhaps next week I will go to work as normal and then on my rest days, I could do small things?”
“Or medium-sized things,” she says, with a smile. She lifts her hands slightly, and then brings them to rest on her knees, like a primary-school teacher does before announcing lunchtime. “Now, Billygean,” she says. “Why is it that you might want to hang on to this?”
“This… illness?” I say, confused.
“I don’t,” I say immediately. “Perhaps I’m institutionalised.”
“No no – I don’t mean that you want to be ill. Rather, that it is… who you are.”
“The whole thing,” she says, adjusting a button on her blouse. “The illness, the recovery, the pacing.”
The recovery. She has touched a nerve. I open my mouth, thinking I may as well be honest. “I love to talk about recovery.”
“And why do you think that is?”
I look around the room, this safe room, with a beautiful real fire and a black Spaniel called Charlotte, where I can say anything I like. “It gives me self worth,” I say. I didn’t even know it did that, and yet, somehow, I know I have spoken the truth; the words seem to hang in the air in front of me. “And attention,” I add, for good measure. I think of all the blogs I’ve written here about recovery: how proud of been, the comments I’ve received, the interest, respect, even, that shows on people’s faces.
She nods, looking pleased. Like we’re finally getting somewhere. “And what kind of self worth did you have before you got ill?”
“Good,” I say. “I mean, it’s good, now, too.”
“What I’m saying, Billygean, is that you need to find a way. A way to be you again. Without this illness. Without this recovery. Just you. A lawyer, a friend, a girlfriend, a cat owner. But not a sick person. And not a well person who was sick. Just a person. Just – you.”
2 months ago.
I push MadFather in his wheelchair around Sainsbury’s. He broke his ankle before Christmas, in an alcohol-and-black-ice moment.
“This is annoying,” MadFather sings. “I cannot WAIT to put both shoes in again in February.”
“Ah, two shoes,” I say. “What a luxury.”
“It shouldn’t be,” MadFather says, shifting and reaching out for a fajita kit. “But it is. Mind you,” he says. “This is nothing compared to what you went through.”
“Huh?” I say, and for that moment, I have no idea what he is talking about .
“You didn’t wear shoes for eight months!” he says.
I smile. “Or day-clothes,” I say.
“No… You must tell me one day how you avoided going mad.”
“What I must tell you about,” I say, pushing him into the dairy aisle, “is all about our holiday we’re booking.”
“Exactly 27,” my Mum says at 13.34; the minute I was born.
“Hurrah!” I say.
I hold up my glass and, internally, toast myself. A daughter, a sister, an aunty, a lawyer, a bath-taker, a slow eater, a library-addict, a blogger, a Type A personality, a cat owner, a lawyer, a smiler. And I don’t think of the illness – or of recovery – once.