I can't wait to wake up on the weekend and go on a hike and picnic at the nature reserve in the cold without any pain. I can't wait to do power cleans & arm accessory day. I can't wait to run in the cold with my tobagen on. I just want a baseline of normal body mechanics SO BAD.
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If you allow a little bit of unwarranted pouring out, the hardest part is that it is so mild. Because it is not instantly visible to anyone and you could know me for months without knowing I had it unless I told you, but in my reality it is so pervasive and affects so much of
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My life and how I function. Sometimes it feels like I am silently suffering if you can understand that.
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Yeah absolutely. I've had a taste of that as I've gotten "better but not enough yet"
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Yes exactly. It is like im stuck there perpetually because "nearly normal" is my ceiling
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What are the ways your illness manifests? I'm happy to talk about it with you.
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It's funny, writing it out always makes it seems less than it is but I'll give it a shot. I have hemiplegic mixed Ataxic hypotonic CP AKA weak, relaxed muscles and trouble with fine motor but only on the left side of my body (tho residually on right)
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The biggest way it manifests is in fine motor involving my left side. For the most part I live as though I have one arm. Anything that is more complex than grasping and opening a door I must do with my right
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Is it your entire left side or is it just the arm? Is there any type of training you do with it too help?
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