TW3: That Was The Week That Was

Flat on my back again. But good weather for it, wet and grey.

This week has been kind of interesting, but not sure if it is in a good way or a bad way. I had two phone appointments with my occupational therapist (OT) and my care coordinator, one zoom call with the Dizziness clinic physiotherapist (PT), and one in-person appointment with my doctor. Each had something diffferent to say.

First off, on Sunday I started moving some firewood from outdoors into the woodshed since there was now room for it. I figured that if I split the job up over three days I'd be within my energy envelope. I also went to a neighbourhood Christmas party that evening, which I really enjoyed. However my first day of moving firewood I racked up 92 minutes of "fat-burning exercise" (according to my fitbit), which was definitely not within my energy envelope. But I felt okay enough to go to the party and get silly drunk.

Monday I still felt okay so I did the second third of the firewood, but there was so little left and I felt pretty good so I decided to finish the job. 46 minutes of fat-burning, still not good but I thought, oh well I can rest all day Tuesday. Then I went to move the sheet of plywood that had been covering the wood pile back to where it had been. Too heavy to lift so I was sliding it across the ground. The front end snagged on something, I pushed again and my feet slipped and I fell flat on my face onto the plywood.

Boy did that hurt! Amazingly, my glasses didn't break although the frame bent a bit. My face was a mess though. I went inside and laid down for some time and then went out to finish moving the plywood. Spent the rest of the day resting, I was pretty shook up.

Tuesday I talked to the OT, told her what happened, we discussed staying within my energy envelope and lessons learned from making mistakes. She was very gentle about it.

Wednesday I went to the doctor's and also the optometrist to get my glasses bent back to shape. I am thoroughly grateful for masks, I did not have to show off my really banged up face. Discussed some medication options with my doctor and she gave me a prescription for something new to try. I asked about a couple of other drugs but she felt they were way too new for her to feel comfortable prescribing them. They're not actually new, they are just starting to be used off-label for what I have. I was happy about the prescription that she did give me though.

Stopped at a farm on my way home to pick up some kindling and braided trivets. Went home and utterly crashed, I could barely make it in the door and to the daybed. Managed to get up long enough to get something to eat, but that was it, I was toast.

Thursday was no better, I did not bother getting out of my pyjamas because I felt so sick. It is post exertional malaise (PEM), the hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It can be delayed by as much as 72 hours after one has overdone it. So I overdid things Sunday-Monday, continued along thinking I was sort of okay (I knew I was going to pay for it but whatever) and then Wednesday afternoon it hit. It feels like a bad flu, minus the fever, respiratory and/or gut symptoms, one just feels awful.

My physio zoom call was Thursday afternoon and the PT just threw the book at me.

"What did I tell you? 

And what did you do? 

You fell because you didn't listen and you didn't do as you were told! 

You think you can just live like you did before but you can't!"

And on like that. I've gotten used to her style so I kinda knew this was coming. Among other things she mentioned that her mother has ME/CFS and she has lectured her mother about pacing and her mother continues to mess up. I get her frustration, but, a little bit of transference maybe?

The OT is very gentle with me and the PT is the opposite, but maybe getting lectured like that will make it sink in. I CANNOT exceed my energy envelope. Not only does it result in PEM, but as long as I am continually putting myself in that state I will NEVER improve.

Friday I am still sick. I have an phone appointment with my care coordinator. I tell her the story of my week and she asks me if I know what my anaerobic threshold is. I don't even know what that is, let alone what mine is, so she says she'll email me the formula for calculating it. She is happy to hear about the prescription my doctor gave me but warns me that if it makes me feel more energetic I have to resist using that energy, it is a kind of false dawn.

I get her email and the formula looks familiar. It is: 

(220 - your age) x .6 or .5 (depending on how severe one's illness is). 

This is meant to be the heart rate (HR) that I must not exceed, the limit of my energy envelope. I do the calculation and realize that it more or less coincides with what my fitbit tells me is fat-burning exercise. In other words, I must not get any fat-burning exercise at all (never mind cardio!). That's a steep challenge! I optimistically used .6 as the multiplier; if I used .5 I would pretty much have to confine myself to bed.

Today, Saturday, I am still sick but I needed to bring in a load of firewood from the woodshed to the smaller stack beside the woodstove. It was 7 minutes over my threshold to get it to the back door, another minute to get it stacked. 

This being winter, I will probably average a load a day. That is 8 minutes outside my energy envelope every day, at minimum. And if I do anything else (shopping, a short walk, a visit with friends, etc) I am so toasted.

This sucks.

John

I got a phone call yesterday from a stranger telling me that a dear friend John had died a month ago. I almost didn't answer the call because I didn't recognize the number, but he was legitimate. It was shocking and extremely sad, I spent the rest of the day in tears.

John lived on the other side of the country, where I used to live. I met him a couple of decades ago, warmed up to him gradually. He was the kind of person who was a little bit in your face, but not in an aggressive way, he meant well. I got used to that and eventually appreciated it very much. When I moved across the country he was about the only person aside from family that I kept in touch with by phone, and our calls usually lasted over two hours. We talked about everything, we laughed a lot. Ostensibly we were talking about my financial affairs—he was my financial advisor—but rarely did that part of the conversation last for more than 15 minutes. And it went right over my head. I trusted him though and was glad that he knew what he was talking about, because I sure didn't.

The few times I went back out west to visit, he was on my list to check in with. We'd meet in his office and later go for lunch. He was into ikebana (Japanese flower arrangement) and he made a new arrangement for his office waiting area every week. Sometimes he'd explain the meaning of it to me, but I'm afraid that went over my head as well. They were beautiful though.

The last time I talked to him was a few weeks before he died. I knew he had cancer, I knew it had metastasized, but he was so upbeat and optimistic that I thought he had more time. During the past summer when he knew his cancer had metastasized, he went with a friend to visit their family in England, something he often did. I gather it was a very good visit. He was also an extreme skier and hiker. He always took his dog on his hikes, sometimes his daughter would accompany him. He loved the west coast.

The man who called me yesterday gave me his daughter's email address, with her permission. I wrote to her today to tell her what a wonderful man I thought he was. She just had a baby the week after he died, how sad that John never met his grandchild! And how sad that she must deal with grief and joy at the same time. Understandably, she has not planned any celebration of life (nobody has funerals these days!).

It is so distressing to get such news and have nobody to talk to about it. I tried phoning a couple of people but no one was home, and none of them would have known who John was and how much he meant to me. I do hope his daughter is coping.