EDS Blog Challenge Day 10 What I Want People to Know About EDS




That the EDS makes me tired and everything else that goes along with the EDS makes me tired. Just because I took a five-hour nap doesn’t mean that I won’t be tired the minute I wake up. Having EDS means that I’m going to be stuck in a perpetual state of exhaustion until they day I’m dead most likely.

And because I’m tired all the time I will have to cancel plans or cut them short. I might have to use a wheelchair too or drink very large amounts of coffee to be able to keep up with whomever I’m with. I’ll need to take breaks and sit sometimes if I’m not in a wheelchair.

I have to ration my energy, if I do something with you please know that I’ll have to rest a lot between now and then. Often times doing things at the spur of the moment is very hard or impossible.

And I know people mean well when they say 'get well soon' but also know that I'm never going to get better. This is a genetic illness, there is no supplement, vitamin or treatment that is going to make me well and "normal". You have to take one day at a type and roll with your symptoms. My medicines I take manage my symptoms, none of my medications "cure" me, they take the edge off the variety of symptoms I experience so I have better quality of life. All of the things I do are simply for better quality of life and nothing else.

EDS Blog Challenge

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