I’m Tired and Alone and Defeated

I have been struggling with POTS for years. It’s only getting worse with time rather than better, despite me doing everything “I’m supposed to be doing.” It’s so unfair. I know this is a lifelong thing, I have multiple “lifelong things” (I also have a bipolar diagnosis). And let me tell you, Bipolar mixed with POTS is AWFUL. Because bipolar will give me energy and make me feel like I’m on top of the world, only to get absolutely wrecked by my body not keeping up with my mind. Since starting bipolar medication, that’s slowed down, and now I don’t get those euphoric moments anymore. Now it’s all just exhaustion and POTS symptoms.

No one else in my family or immediate circle has POTS, that they’re aware of at least, idk I’m not here to diagnose people. So they don’t get it. My partner is also disabled due to spinal issues, so he gets it a little bit in the sense of relating to needing to lay down or sit constantly, not being able to lift heavy objects often, general ‘disability’ stuff he can relate to. But when getting into the specifics of POTS, I can’t help but feel isolated. No one around me gets the frustration of dealing with 170+ BPM daily just from walking my dog up the stairs. I’ve gotten SO USED to being dizzy and lightheaded that I don’t fall anymore, and can “seemingly operate fine”, but no one knows my vision is entirely black every single time I stand up. I go a good few seconds of starting walking around my house completely blind while my body catches up (god forbid I move houses eventually). I have a service dog which has been helping, but it’s still just me dealing with this shit alone.

I worry about my body giving out on me someday. Doctors say POTS isn’t life threatening but I doubt it’s good for my heart to be going so haywire all the time. My uncle died of a heart attack in his 30s. I’m 28, and I’m scared ngl. Because of my symptoms just getting worse over the years, I do worry about how much time I really have.

My doctors aren’t helpful. They don’t even want to prescribe medication for it because I also have issues where SOMETIMES when im sleeping, my heart can go too low so they’re afraid I could die in my sleep or something (yet they haven’t investigated that????) It’s just “hydration + salt!” Fuck off 😭 I need to see a new doctor, if anything to figure out why I’m dropping so low while sleeping, but monetary issues are blocking that right this moment, so am I fucked?

Basically I’m just making this post because I’m frustrated and tired of feeling alone.