30 Days of MSA Awareness. 11. There is a lot to learn, not just about the disease itself which even specialist seem baffled by.but by how to live with it. Eventually you learn from someone else you you become expert at adapting. I found oh so many uses for Velcro, it helps me hold utensils and paint brushes on my worst days. Less gets knocked over when there is one of those non-slip mats underneath.I use a cutting board on my lap for my mouse because my keyboard and monitor are off to the side, less eyestrain, and I put the keyboard on my lap when I need it. For days swallowing is a problem I keep yogurt on hand, and frozen fruit. I dont do well standing for long periods in the kitchen so what cant get done in 5 minutes is pointless unless I am having an unusually good day. Luckily I rarely feel much like eating, gastroparesis sees to that, sometimes on days I feel my insides are cold as stone I doubt anything is being digested at all, and bending over only results in a mouth full of vomit as the sphincter which is supposed to shut the oesophagus and keep everything from spilling no longer works well, if at all. So bloated and uncomfortable, most of the time I dont feel like cooking, or eating. So I indulge in teas, coffee and flavour derived from small bites. I find it hard to eat like a mouse yet feel like an elephant. My once impressive tolerance for good scotch, gone. My ability to take a nap, gone. Feeling in my feet, gone. One night in the middle of Canadian winter walking the dog I noticed something strange I no longer shivered, and not once since have I shivered or rattled my teeth no matter how long I am out tin the cold. If I overheat it takes a very long scary time to cool down, so watch myself when it is warm, likewise with cold, by the time I feel cold I am well on my way to hypothermia. I no longer have goose bumps or mottled flesh. For the most part it is not even like being in my own body, sometimes I feel like shouting, what have you done with it you bastards, give me back my body. Some days this goes into bargaining, if you give me back my body I will .... I live in the body of a toddler in many ways. Have to use the bathroom every two hours need to or not, did you eat, drink take your pills. I can barely remember what day it is let alone what I am supposed to do that day. Stickys and calendar reminders everywhere and still I get it wrong. I dont think anything is as annoying as never being able to feel comfortable in my own skin, because frankly this is no longer my own skin. More: https://facebook/notes/aletta-mes/30-days-of-msa-awareness/10152235479847179
Posted on: Wed, 12 Mar 2014 06:41:53 +0000
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