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.