#orthostaticintolerance

Something really unexpected happened early this month before the fires. In September I had asked my NP if I could get her to prescribe a rollator for me, as the one I got out of the junk warehouse was in bad shape. I was all ready with my “because let’s face it, even if I build up my strength I’ll still be that person who has to sit on the sidewalk or on store floors at any given time because orthostatic intolerance sucks” but she was already printing the paperwork! She told me I’d be contacted by the company to answer some questions, but I never was. Instead, less than a month later I got a phone call from a delivery service saying they’d be by in a few hours. They arrived early. I signed a tablet. They left. I adjusted the rollator myself (it was set up for someone roughly 50% taller than me). And now I have a rollator with working breaks and a seat that isn’t peeling and handles that don’t fall off when I’m taking it out of my car. It cost me the same as my dumpster dived one: $0. You can always ask your doctor if you think you would benefit from a mobility aid. Or you could be like me and scope out creepy warehouses for one and hope for the best. You don’t need permission. You don’t need to use it 24/7. Just ask. #chronicillness #chronicallyill #chronicpain #chronicfatigue #pots #posturalorthostatictachycardiasyndrome #orthostaticintolerance #agoraphobia #rollator #walker #mobilityaid #disabled #disabledlife #thatactuallyworkedwell #pleasantlysurprised

BYO = Bring Your Own

--- Somebody wrote this summary for laypeople when I shared it on Facebook: Summary - 91% of people with ME/CFS had insufficient heart output and hence insufficient blood flow to the brain despite normal heart rate and blood pressure during a tilt test. Ie even though they may not meet criteria for POTS 91% of ME/CFS sufferes have reduced blood flow to brain when body changes position.

Contains quotes from patients and also some experts in the field