After attending a meeting on teams where several people praised my work , I went to use a urinal. It was then that I almost started to cry.
Not because anything bad happened when I was going to the bathroom or because I was so tickled with myself, which I am regularly.
It was more because the latest symptom that I am having — I the loss of temperature regulation — it's just so overwhelming to me. At my desk, my hands and feet are frozen, but the rest of me feels like I am in a sauna. And that's how it was after my meeting. It was just defeating.
There is not much one can do about this issue. My neurologist did not have any ideas. I mentioned add to my regular doctor, and he was sympathetic but also did not have any ideas.
Friedreich's ataxia has the most crappy symptoms, and they take so much out of me. I'm just like Katy Perry.
1 comment:
I went out on Friday and got wet and Could not warm-up. Had a terrible rest Of the day, finally gave up and went to bed and shivered under six blankets. Then I finally woke up hot in the middle of the night, cold drink and blankets taken off. I regretted going out in the rain. But I had a nice visit. Not sure it was worth it. So I'll stay home in the rain. I don't totally get it Matt, But I do understand in the aspect that the temperature regulation for a quadriplegic is rough. When I get hot I can't get cool; when I get cold it is downright awful. So sorry. Congratulations on your stellar work. That is a win!
sdt
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