How do you plan to get it back? Or at least I should say, not lose as much of it as you possibly can help? What is the game plan? What do you accept (or try to), and what do you think you should do from here?
I can’t see a neurologist. To see a neurologist, I’d have to go to the city (which is like a half-hour away by highway or train and I can barely drive to the next town over and I end up on the floor at random all throughout the day at unpredictable times I can’t control for like a randomized total of like 6 hours a day, so, getting to the city is literally impossible), and I could only see a nurse practitioner.. at the neurology place, no neurologist, k, anyways
I had to explain to the nurse practitioner what dysautonomia was (which my cardiologist diagnosed me with), and help her pronounce it twice (it was very clear she had never really heard the word before).. eventually, she figured “oh, POTS” - I actually don’t have POTS, and tried to explain that to her albeit I have a form of dysautonomia under the same dysautonomia umbrella as POTS is, but, she just kept referring to it as POTS
All she had to say about it from there was: there is no cure, there really isn’t even a treatment basically, and they do not treat or deal with it there because they don’t have the resources or the education to
She said the only person who can talk to me about that really is an autonomic specialists (there are 2, in my whole state, she said - yes, each in the city and each do not do telehealth)
She said “all we tell people here for that is to treat the psychological aspect of it because there is an anxiety component to it and it’s basically a matter of managing the mental health aspect around the negative emotions associated with living with the condition” - which is basically a super long way to say “basically we think you should just stop being such a fucking downer about losing your entire life to a chronic illness”
And this is the place I was referred to in order to treat my dysautonomia, essentially. At this point, she essentially looked at me with this lack of patience as if the next question out of my mouth would result in her calling security to toss my ass out into the parking lot if after the 2 questions I asked her explanation that essentially I am completely beyond hopelessly fucked wasn’t good enough for me, as she practically pushed me out of the door.
I must make it through today, but, my dysautonomia is not letting me get through it, I’m afraid. What are some things - frames of mind, ideas in your head, outlooks - that you have success with in helping yourself through the tough times when the dysautonomia is intense and you must be active?
I am afraid I will basically not be able to walk really. Or stand. Or drive. Or any of that. If it gets much worse. My bad days are far more frequent than my.. less bad days now. I don’t know what to do. I feel like it’s all falling apart on me now. My life. I don’t think things will be at all okay for me in a tolerable way, for much longer.
Started to feel dizzy in my backyard. Started to go down/stumble forward looking to grab onto something. Ended up crashing through a whole bunch of wrought iron metal chairs that went flying all over the place and flipping upside down and crashing the patio table that went flying into the side of the house and ripped my knee open bad on a nasty old outdoor metal chair and had to go get a tetanus shot. I’m pretty heavy too so like, not feeling great about that as I feel my weight contributed to the spectacular grandeur of the scale of the crash. Looked like a grizzly bear came charging through or something.
So that’s how my day went. Very aggravating. Also didn’t receive a whole lot of warmth or sympathy for it honestly. Kind of got a sort of ‘ugh one thing after another with you and all your health stuff’ kinda vibe response mixed with some condescending tone of ‘maybe you shouldn’t be left alone anymore!’ and then was just kind of expected to limp around on my busted knee doing shit without like a “hey you need a hand with that? Sit down I can get that.” Idk whatever that’s people but just kind of rude I thought.
Anyways, all’s well that ends well I guess at least I don’t need to worry about a tetanus booster for another 10 years and I gotta sweet antibiotic ointment for my knee out of the deal.