Hell, everyone. A little bit about me.. I have hypermobile ehlers-danlos syndrome (hEDS), POTS, small fiber neuropathy, fibromyalgia, Myalgic Encephalomyelitis, Hashimoto's disease, severe GI issues, and a litany of other conditions.

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I currently use a rollator walker with a seat pretty much every time I leave the house, but do not use it in my apartment because it's a small space, I need it less inside the house, and my apartment except for my partner's is not mobility aid accessible. I am on IV saline infusions for my POTS. I am noticing as I get older, my POTS gets worse, I may have good lungs but I always feel dizzy, lightheaded, weak and out of breath. I also am very prone to chronic pain and injury due to my hEDS especially from standing and walking longer distances.

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I am reaching the point where I am wondering if I need to get a wheelchair in the near future, but dealing with a lot of internalized ableism. Am I faking it? Am I being dramatic? Am I just lazy? How do I know when my health is bad enough to need it? With my weakness, dizziness, and severe fatigue from my CFS/ME and POTs combined with chronic pain, chronic injury, chronic stomach problems causing more weakness and fatigue and dehydration, and my rapidly declining neuropathy, I know I need help, but I do not know how much.

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I know I need to strengthen my muscles and I need to exercise, but the threshold between the right amount of exercise and over exertion is so so small because I can only do a tiny fraction the amount than the average joe.

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I also deal with paranoia that I will be harassed and hurt by strangers and doctors more because I would be an ambulatory (part time) wheelchair user as well as because I am plus size. When did you reach the point where you knew when you needed it? Has anyone needed it specifically struggling with hEDS, POTS, Small Fiber Neuropathy, or stomach problems? When did you know?

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#SmallFiberNeuropathy #PeripheralNeuropathy #EhlersDanlosSyndrome #EhlersDanlos #HypermobileEDS #HEDS #POTS #posturalorthostatictachycardia #Gastroparesis #IBS #CFSME #CFS #ME #hashimotos #Wheelchair #ambulatorywheelchair #MobilityAids