Tuesday 12th January: How to start 2021 with CFS and a pandemic.
Our answer phone blinks furiously with mysterious messages from a surgery we don’t belong to. I better call to let them know they have the wrong number. It will be my first task after breakfast. With CFS, you have an ‘energy envelope:’ a finite amount of mental and physical juice available to you that day. If you overshoot it, you find yourself in PEM town. PEM stands for Post-Exertional Malaise. One task too many can leave you stranded there and it’s a horrible place to be: days with fatigue so intense that sitting up in bed seems insurmountable. It’s worsened by non-restorative sleep, my cruel brain’s favourite kind.
I used to call such days ‘My Lost Days’ because I didn’t know what was happening. As always, I presumed they were the result of me doing something wrong. Now I call them PEM days instead, which eases the shame of being unproductive, and helps me plan them. I still find the gap between what I want to do and what I can do so hard. But constant disappointment is draining so each night I try to practise acceptance of whatever I have or haven’t managed that day. As a deliberate act. Like homework. And to notice anything I can be grateful for. (Sefi always.)
Today, I’m extremely grateful that I did have some restorative sleep last night. I figure I can manage to leave the house and do some errands. Like a normal person having a normal day as if everything is normal. And I pray for enough remaining juice to get back to my blog afterwards. It’s been two months.
But first I must make that phone call. The recorded message is a six-minute-list of alternatives to speaking to a doctor because Covid means surgeries need to prioritise. Could have been twelve if repeated in Welsh. The human who finally picks up is stressed when I explain what’s happened: ‘I need more details” she says. “I was just trying to help, I was worried about this patient” I say. She softens and we do a bit of detective work. In a Bristol accent she ends with: “Thank-you my love.”
During PEM, that one task might finish me for the day. But I’m not done today. I walk up the road to the pharmacy to pick up my monthly prescription. They hand me my Citalopram but there is no Promethazine (the antihistamines I use for sleep). It’s been missed off from the script that was post-dated over Xmas. Oh no. I have a shift at school tomorrow. Although locked-down again now, the school is still open for SEN and vulnerable children, and as I work in The Autism Base I’m on the rota. I love our students and I want to be there, even if only minimally.
I’m used to pushing through on the adrenaline that insomnia seems to produce to replace the energy created by actual rest. I can do it and will still when necessary. On the outside it will resemble energy but inside it feels strange, artificial, more like mania (especially if combined with caffeine). And will come at the cost of the inevitable ensuing crash (the bit the outside world doesn’t see). It’s not how I want to operate any more. I’m trying to let CFS teach me a new way.
The pharmacy tells me to pop round to the surgery for an emergency prescription. I do so and speak to the receptionist through an intercom as Covid means I can’t go in. She’s helpful but tells me I’ll have to wait for the doctor to phone and then go again later to collect. The pleasing, increasingly elusive, anticipation of ‘getting a job jobbed’ evaporates and my small setback threatens to merge with the tidal wave of the stuff out there that I’ve been keeping at bay – the virulent new strain of an already rampant virus threatening our lives and the logical progression of demagogue Trump’s propaganda tearing down democracy – for instance. I’d like to fling myself down on the pavement and wail. But I decide against it.
Breathe, I tell myself. Don’t spiral.
I get home to be met with double drilling. Just as I dared myself to believe that the building work next door might one day end, something is now afoot with the house at the back. Sefi races into the garden when a man in a yellow High Vis singing along to his blaring radio (“I’m so excited”) leaps onto our wall to set up scaffolding poles. Sefi is like WTF, what else can possibly go on in my territory? I come out to soothe her. Bring her chicken, stroke her back, speak softly. I ask the man what’s happening, telling him how we’ve had building work next door too for 12 WHOLE WEEKS. He says this job “shouldn’t be a long one” but then adds, chuckling, “although I say that and it might go on to Christmas. Ha ha!”
Oh my god. Oh my god. Is the Universe trying to kill me?
No. Breathe. Don’t spiral.
Indoors, I climb up the attic ladder to my desk with Sefi right behind me. I put ‘Soft Sounds of a Tropical Ocean’ on YouTube to drown out the two-pronged sonic attack from our neighbours. Here I am with, amazingly, the mental clarity to write again and I’m terrified it will dissipate under frustration and distraction. I just want to do my work, that’s all. So I must breathe, not spiral. Sefi is happy because she loves it when we’re in the attic together. Me writing. Her curled up like a furry ammonite. It’s the best thing. For both of us. I focus on that.
I manage the genesis of this article and then it’s back out to the pharmacy. ML is just home from work and says she’ll come with me. It’s just up the road. We pass the spot where three days ago ML had literally held me up as I blacked-out after my flu jab. Medical situations often do this to me. The last time I fainted I broke my nose and ML still gets distressed at the memory of finding me bleeding and apparently unconscious on the floor. I haven’t told you about that yet but I hope to soon cos it’s a thing: I want to write about the ways trauma spreads its tendrils out into your life over decades even when you’re stable and kind of healed and happy.
At the pharmacy we chat as we wait in a long socially-distanced queue. ML tells me that cycling back from work tonight she passed two or three hundred protesters outside Cardiff Bay Police Station. It’s because Mohamud Mohammed Hassan died suspiciously after emerging from Police Custody there at the weekend. Behind us a little fluffy white dog nudges our legs for attention.
It all blends together, doesn’t it? The personal and the global. The joyful and the unjust. The mundane and the horrifying. My brain doesn’t know what to do.
We reach the head of the queue and I get my hands on the medicine that may help me sleep tonight.