March 13, 2017

The basement was cold and dark, but I was determined. My morning had been hard but possible. My son and I made the bird feeder that he’d been asking to make for 3 weeks. We still had some deer fat from the fall so we melted it down, added seeds and stuffed it into a mesh bag. We made a big production out of going outside to choose the best spot to hang it, so the birds could find it and have easy access. We also wanted it to be somewhere we could see from inside of the house. 

Then there was all the cleanup, and since my 5 year old had been so involved in the stirring, there was deer fat and bird seed all over the kitchen. It was tiring, but I had promised. Each morning I try to do something fun with him, something that doesn’t involve screens or mass produced toys. If I was healthy I’d be taking him hiking, on nature walks, to the park, or at least somewhere out of the city. The way it is though I have to figure out activities that I can do, games that won’t make me feel like passing out. The bird feeder was a great craft for today, as tiring as it was. 

When I came back from dropping him off at school I watched a movie. It was about a woman who had been coerced by catholic nuns into giving up her son for adoption, and 50 years later she tries to find him. When it was over I gathered my resolve and went to the basement, put on my running shoes and got on the treadmill. 

I was determined to do 20min at a speed of 2mph. Winter is coming to a close and I want to feel safe walking my boy to school again. It was hard. My heart rate kept rising and my chest hurt. I tried to think of what it was like before, when I could just walk without thinking of it. In college I walked everywhere. I didn’t have a choice really, we didn’t have access to a car and the bus system was ridiculous. Walking was second nature and I never gave it a thought. When I moved to this city I walked to work everyday. It was a nice way to start my morning and I always got to work energized and in a good mood. Today on the treadmill, after 20min, I was weak and shaky. My heart rate was up to 145 and the pain was intense. As soon as I hit 20min I went upstairs, holding on to the railing in case I became too dizzy and fell down. I climbed into bed, congratulating myself for accomplishing what I set out to do, promising myself I’d do it the next day also, and slept until my husband got home.

The chest pain lasted the rest of the night. As soon as I finished cooking and eating dinner I went straight back to bed and lay down with my feet in the air, hoping for a bit of relief. 
Then I got this text. 

It hurt. I try so hard and no one understands. Every time I get out of bed I’m trying. By trial and error I’ve found out what I can and cannot do, what’s worth pushing myself for and what’s not. I’m the only one that has to live with the consequences of any exercise I do, and I’m the only one that knows how much it hurts. 

I know I’m weak. I know I’m fat. I know I’m deconditioned. I don’t need anyone else pointing it out to me. When you’re chronically ill people treat you like a child and feel entitled to tell you what to do, whether it be exercise, diet or medication. People stop framing ideas as suggestions or questions and instead give them to you as demands. Solutions that if you don’t try then you’re to blame for your situation. People can talk between themselves and make plans for you without consultation. It stems from a place of love and kindness, but overwhelming misunderstanding of what you really need, which is unconditional support and trust that you are doing what’s best. 


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