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Guess I'm in the same boat as you.. It just isn't fun being sick all the time, but looking so normal.. I, too, am a cheerful person and always trying to laugh and make those around me feel good.. The Neuropathy does affect my walking and balance now that it's progressed up my legs to my thighs. I recover quickly from the wobblies and pretend it never happened.. I also have the hot red burning feet (Erythromelalgia!) and that keeps me off my feet most of the time. That wakes me in the early morning hours and I have to get in the cold shower til they settle down. Also, when my feet get too cold, they will behave the same way as when hot – so that doesn't help either..
I'm at the stage now that I'm so angry at all the doctors that I've seen over the years who just shook their heads and did nothing for me to prevent this. That was the reason for going to them in the first place.. I could feel it progressing and wanted to stop it before it went further.. Sorry, but I'm so downhearted and feeling so very sorry for myself just now.. have lost my smile

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Replies to "Guess I'm in the same boat as you.. It just isn't fun being sick all the..."

Sometimes all you can do is feel sorry for yourself, and frankly, I think it is very normal when you have serious illness. I go in the bathroom, and I just cry. Then I get back up again. I try to do things I love, and try to be with people I love. The pain knocks me down again. And for you, it sounds like the burning, firey feet…..and way, way, way more. Just having people seeing you as normal is exhausting. Balance that is way off is exhausting. I have it too. What can I say? I try to find the things and people I love. as best I can.