No marbles or spoons in the bowl

You have to be honest, so that people believe you. You don’t need to try. You need to be yourself. And maybe, after you show who you are, maybe people will love you more than before, because they see that you are not so strong or are lazy at times. No, each time don’t lie and show people who you are exactly. And it’s important not to show that you are better than who you are. 

~Volodymyr Zelenskyy, March 2022.

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It's been awhile, not a great time. I completed the CBT-I course. On paper, according to my sleep diary, my sleep "efficiency" improved a lot and the amount of time I spent sleeping improved marginally. In reality all my illness symptoms got worse and I continue to wake up exhausted, "unrefreshed" as it were. I guess the facilitator gets bragging rights about my improvement but from my perspective it was a complete disaster that I am trying to recover from. Good luck with that.

A week after the CBT-I course ended I started an Energy Management (Pacing) program and so far, it feels like yet more disaster in the works. The facilitator, an occupational therapist, said that it would be "hard work", and that some of us will only see survival as the outcome. I question whether survival as an outcome is worth yet more hard work. I drafted an email to that effect and sent it to the OT, but got back an immediate response that she was out of office and would not be back until the next Pacing session happens. So do I show up for it or not?

If I am going to work hard, I'd rather do it in my garden, there at least there will be a positive outcome to hard work. My Wednesday coffee buddy's husband has a business doing cabinetry and finished carpentry, he is going to make garden frames for his wife and he said he'd make some for me too. Mine are disintegrating and it sounds like the ones he will make will be way better. He has started attending our coffee dates but he only stays for a short while, just to take a break from his work.

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I have started some seeds but so far only a few have sprouted. I am trying to start onions from seed as I have had poor luck with onion sets. Unfortunately I think I added way to much water to the tray of seeds so I may have drowned them. Hope not but we shall see. 

On Tuesday I drove a friend half way down the Valley to her new home. She wanted to take a load of stuff and I wanted to see her new place. Her place is marvelous, a small one bedroom apartment on the ground level in a kind of motel-like building. She has a front door, a back door, a private patio (with a view of a small forest) out back and two parking spaces in front. I met her new landlady who is very nice. In these days of rising housing costs she is actually going to reduce her rent by almost half, thanks to a seniors' subsidy. 

The only down side is that she doesn't know anyone in her new town, all her friends are here. But she is a very sociable cheerful kind of person, I am sure she will do well. She made me leave my deck chair at her new place so that I would be obliged to come visit. The problem is, that after I got home I collapsed; an hour and a half of driving, lunch out, and a tour of the local shopping mall utterly did me in. My chest hurt and I was winded, dizzy and spaced out all the next day. There is a bus, but it takes almost two hours one way.

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Today I did a bit of yard work. I had to cart in some firewood and while doing that observed all the things that need to be done this month. It was very hard to resist tackling it right away even though according to the Pacing program I should not. They use a lot of metaphors in this program that sound descriptive but when you break them down they're not so helpful. 

We were supposed to imagine that we had a bowl of marbles when we woke up and each time we engaged in an activity we spent a marble or two. Some people know it as Spoon Theory. The OT asked us to describe how we spent our marbles. I drew a complete blank on that and then asked, "What if there are no marbles in the bowl when you wake up?" I just couldn't picture it, the metaphor made no sense to me. 

Another one was about activities that "recharge our batteries". What activities this week have recharged my battery? Again, not able to picture it. The reality for me is that I am not a very meditative person, I like to be active, gardening, paddling, swimming, etc. These activities are what give me pleasure but now they are draining. So do they "recharge my battery"? Or do they run it down to the nub? 

I don't think I'm going to be a very good program participant. After the CBT-I experience I am hypercritical of programs that supposedly are going to improve my health. I am in a space now where I feel that since I am no better now than I was two years ago when I first got sick, it is highly unlikely that I will ever improve. My age and the lack of decent medical care are working against me. I see that they are working on changes to MAID, one of them is Advanced Directive. That's where you can be approved for MAID even though your illness is not fatal, just no hope of recovery. At this point that is hopeful news to me.

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But to end on a positive note, I am extremely grateful that the CBT-I program is over. I was happy to see that a few of my seeds have sprouted. I'm thinking about getting a puppy.

A special horror

Politics is like bad cinema—people overact, take it too far. When I speak with politicians, I see this in their facial expressions, their eyes, the way they squint. I look at things like a producer. I would often watch a scene on the monitor, and the director and I would yell, 'Stop, no more, this is unwatchable! No one will believe this.' ~Volodymyr Zelenskyy, 2019.

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I  crashed hard after last Friday's snowstorm, shovelling on Saturday triggered it. I am also in a cognitive behaviour therapy for insomnia (CBT-I) zoom program, at this stage we are restricted in how much time we can spend in bed. The combination of restricted sleep and post exertional malaise (PEM) did me in. My sleep time (we have to keep sleep diaries) plummeted from 6 hours to 3.5, and by Tuesday I was damn near suicidal. 

Had a major meltdown in the zoom meeting on Tuesday, in front of everyone. One of the participants suggested that the facilitator—a psychologist—and I deal with it after the meeting. I thanked her for saying that. Anyway, clearly I am not in good shape. 

The following morning was my weekly 'coffee date' with a neighbour and I told her about it. She has a chronic—ultimately fatal—illness and she recounted how it was for her when she realized that this was her life from now on; all her plans for her future were gone. I think that I am just coming to that realization; after almost two years of illness there is no firm diagnosis, no treatment and no hope of recovery (based on what I know of other people's experience). Not to mention a doctor who needs hard evidence in the way of medically approved tests before she'll say or do anything. She kind of twisted my arm to go into this CBT-I program and so far, more that halfway through, I feel worse rather than better. Probably one of the worst winters I have ever had.

I am mostly flat on my back except for necessary activities like grocery shopping and food prep; about all I can do flat on my back is read or use my iPad. And hey, have you been watching/reading/listening to the news lately? Enough said. Here in Nova Scotia we have the added pleasure of the Portapique Massacre enquiry going on. That's like reliving it all over again, only now you get to see/hear the gory details you didn't know about at the time. I have one image now stuck in my mind: four little kids from two different families hiding in one basement after both sets of parents have just been shot to death. It gets worse from there. 

This has been two years of unbelievableness, it's hard to imagine that things will get better. The major crises happening now are only obscuring the crises waiting in the wings, assuming the current crisis doesn't precipitate a nuclear world war. This isn't over, not by a long shot.

This morning I read a book review in the New York Times (they offered a great deal for a one year subscription so I took it) of The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke, 2022. There were some good quotes from the book which I definitely relate to, and my local library has ordered the book so I've put a hold on it. Turns out I'm first in line.

"It felt as if my body were made of sand, and as if molasses had invaded my brain." 

Totally. This is the one quote I think does a really good job of describing what it's like. Symptoms change, effects are physical, mental, emotional. Not only am I losing my physical capacities but my mental ones as well. I feel like I can't speak properly anymore, a kind of aphasia. Better not to even try.

"My ability to accumulate information felt like the only control I still possessed." 

Absolutely. I've become obsessed with consulting PubMed and a couple of other websites I trust for the latest in research and information. The one tiny part of my remaining life I have any control over.

"...the special horror of being not only ill but also marginalized — your testimony dismissed because your lab work fails to match a pre-existing pattern." 

Yup. So far all lab work and other tests show that I am completely healthy, so maybe a malingering drug addict with mental health issues?

"The illness was severe but invisible. And that invisibility made all the difference — it made me invisible, which itself almost killed me." 

Before this illness I was very active, and I had a great social life built around that activity. Both have vanished. When I spoke with my neighbour yesterday she described what that felt like in her life. For me, I am afraid to appear in public anymore because I just don't want to deal with people's responses, and she said she used to lurk in forest trails around her small northern town rather than walk down the street in public. Where she lived there were wolves, her husband really didn't like her forest lurking at all.

"Your need, when you are sick, can squeeze up inside your chest, balling its way up and out of your throat. I pictured it as a thick, viscous, toxic gel that slid out of me at moments when nothing else could."  

Exactly how I felt when I just lost it on the zoom call: utterly toxic.

"The entanglement of self and sickness became a mirrored distortion, a fun house I feared I was never going to escape…" 

I hallucinated the other night, wide awake and enthralled in this fun house kaleidoscope of colourful sparkly weaving/slithering/flashing shapes, I could see my thoughts embedded in it, hopelessly entangled, like little birds in a mist net.

"There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. … I will not say the wisdom and growth mean I wouldn't have it any other way. I would have it the other way."  

If this is how one obtains wisdom and growth, then I'd just as soon be stupid and stuck, thank you very much.

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It's a good thing I have past experience of copy editing, otherwise this post would be utterly unreadable. Can't speak, can't even type. Took hours of retyping.