Go to sleep crying, wake up crying. Why not.

Noah wanted me to listen to a chapter of this Buddhist book he gets a lot of value from. The point (very roughly) is that pain and discomfort are lessons and you shouldn’t hide from them you should face them.

But I can’t really get over hearing this from the point of view of being a person who has degenerative, chronic health problems. If I spend all of my time thinking about how much pain I am in I am going to spend my life walking around weeping. And then I am very unpleasant and uncomfortable to be around and people won’t like me very much. I made breakfast pretty shitty because I couldn’t stop crying.

Noah is very much looking forward to retirement. It will mean that he no longer has to do boring work for a pay check and he can instead do fun work for free. He can help people who cannot afford to pay him.

I am looking forward to decades of decreasing ability where I can do less and less of tasks that are basic to keeping me alive and I definitely can’t do any fun extra work because it will hurt my body and decrease my longevity.

I would kill a dog who was in as much pain as I am in. It would be cruel to keep them alive to suffer.

But I need to do everything possible to extend my life. Which means I need to do less work that gives me any pride in myself. I need to do less work that has any physical cost. My coach person was going through lists of things including moving wet laundry from the washer to the dryer and talking about how I need to weigh these costs and think about whether it is worth decreasing my long-term functionality so I really just shouldn’t do any of these things.

But I should spend a lot more time being fully present with how much pain I am. Watching stupid tv to pass time and distract myself from crying… somehow makes me a lesser person. I’m on a full on self-pity trip today, lemme tell you.

I am on palliative care until I die. Most people don’t enter palliative care until they have a few months to live. I am supposed to be doing everything I can to turn this into 30 or 40 or 50 years of life.

Because I owe my family that.

My buddy is right that it’s pretty stupid for us to look at big pretty houses with room for enormous gardens and lots of space to pick up and tidy and clean.

That will shorten my life.

When we have a house I do need to immediately hire help. Or I will shorten my life.

She asked me how many years I think I have left at this functionality. I don’t know. I am in a much worse place than I was 10 years ago. I already demur a lot of activities. I need to spend less time with Jenny than I have so far because it wears me out.

Not because she is bad. I really love her and I’m glad I’m here. I’m glad I will get to spend my declining years getting as much of her company as I can physically handle. But the amount I can handle is lower than what I’ve been doing. My pain levels are absolutely through the roof right now.

And I feel ashamed. I feel stupid. I feel bad. I feel useless. I feel like I can’t do anything right. I am supposed to work and I am supposed to not work. I am supposed to do things that make me feel good about myself and I am not supposed to waste spoons.

When we go to Portland I can’t bebop around spending lots of time with everyone I love. I need to see people once or twice a week and that’s it. Especially for the first three weeks when I am alone with the kids and I have to do all the grown up work. I don’t have anything left over to give to friends and that hurts.

Yeah, I need to do the PT exercises more religiously so I preserve what strength I have left. But there is no more regaining of strength. I’m not really ever going to improve. I’m just trying to slow the rate of decline.

I am feeling incredibly bad about myself today. What is the point of spending this much money on help and being this idle so that I can extend my life?

I would kill a dog who was in this much pain.