Five months on

Luckily for Anthony, he got to see Mum in a dream last night. Part of me was pleased for him. I knew that was the kind thing to feel.

In his dream, she walked in to our lounge and sat by the fire. She wanted to sort out my health. She had a pen and paper and was scribbling things down and asking lots of questions. She dismissed Anthony at one point and asked me, instead, the question.

A couple of things here: 

• She definitely would have wanted to help sort out my health. 
• She would have liked that the fire was lit (she loved winter), but she wouldn’t have sat down. She was more of a stand-and-fold-washing-while-we’re-talking-type. 
• She wouldn’t have had a pen and paper—she could remember anything anyone told her, enough that she could ask the lady at the supermarket how her granddaughter was, not remembering so much as just knowing that the baby, whose name Mum would have used, was turning one this week.
• She would have asked questions. But listening was her real skill.
• And she would never have dismissed Anthony. Ever. 

I told him that last point as he told me about the dream.

‘She said it’s your heart,’ he finished.

‘Yeah, it’s broken,’ I replied quietly, wishing it was me who got to see her in a dream.

I did ask one of the GPs back in November if my symptoms could be being caused by a problem with my heart. ‘It wouldn’t be,’ he said. ‘You’re in the wrong age bracket.’

If it is my heart, hopefully it heard that and pulls itself together. Wrong age bracket.

I’ve been seeing the acupuncturist regularly and taking his Chinese herbs.

I’ve been seeing a psychologist to see if bottled up trauma could be contributing.

I’ve been seeing an exercise physiologist and she’s teaching me about the physiology of the illness and about pacing. Pacing involves balancing activity and rest to prevent post-exertional malaise. It’s up to me to make sure I don’t overdo it. I keep an hourly activity diary that she looks at each fortnight. We can see that going to Bendigo for a night over Easter and sitting around with family for Saturday and Sunday is not pacing. They call it, instead, booming and busting. Or pushing through and crashing. I can push through and feign interest in others and try to think of something to talk about that isn’t me or my ill-health, even though I want to throw up but am trying to act like I’m not. Or if we’re standing around the kitchen bench and I want to sit down before my legs give way, I don’t. I lean against the bench to counteract the dizziness. I nod where appropriate but I can’t follow much of the conversation.

Looking at my activity diary with the exercise physiologist this morning via Zoom, it is clear that none of that is ‘pacing’. It puts me in bed for the five days after Easter. Anthony has made me a toasted cheese sandwich, but it’s so high and I have to open my mouth so wide and I just don’t have the energy.

We’ve got to get your pacing sorted out, the exercise physiologist said this morning.

Here’s the thing.

In a world-first, researchers at Griffith University recently used a high-powered MRI scanner to compare the brains of patients with long COVID or a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with the brains of healthy volunteers. They found that the brainstem was significantly larger in both long COVID patients and those with ME/CFS, compared to those with neither condition, which may explain why people with both conditions exhibit common core symptoms, such as brain fog, fatigue, pain and breathing difficulties.

They’re continuing the research, especially as it follows their earlier findings that patients with both of these conditions share damage to receptors on cells that fails to allow enough calcium in. (Read more about their study)

If that’s the case, can anything I do even help? 

It feels like doing nothing hasn’t helped. Yet doing anything at all makes symptoms so much worse.

We call one of my brothers Droo, for short. We spell it like that too. Maeve was telling Anthony and I over lunch today about the time that Droo asked her something.

I thought she said Droo. I don’t know anyone called Droo.

‘Wait. Who asked you that?’ I interrupt.

‘Droo.’

I think hard for a moment. Oh, I do know a Droo. My head slumps further towards the kitchen table as she finishes her story.

I tell them what just happened. Anthony carries my cup of tea to the bed and suggests I hop in.

I know everyone has something going on. Most often it’s probably a battle we know nothing about. I’m writing about mine because I like writing, and like Joan Didion, I write to know what I think. Didion said she doesn’t know what she thinks until she writes it down.

I know what I think after writing this.

I think if we all pooled our problems on a table, you’d scramble to grab your own back.