A typical night & day for me living with POTS

I was diagnosed 4 years ago with postural orthostatic tachycardia syndrome & I'm pretty much accustomed to the annoying symptoms & know how to manage the extreme fatigue, just stay in bed-simple. It seems that way but it's harder than you can imagine because at night I can't sleep much, I have hot flashes, insomnia, racing thoughts and when I get up to go to the bathroom my heartrate jumps up & that pounding is much more noticeable at night, so it tends to aggravate me more causing me to have trouble sleeping &  making me feel restless. When I do fall asleep at night it seems its only for a few minutes & I'm startled awake by my heartrate racing or feeling hotflashes & I get up to check how hot it is cause even though I sleep with a fan on, I feel like the central air should have come on so I check it, but its usually fine lol, I'm just hot. My hysterectomy was in 2004, menopause should be over by now but I think this is something else. I Tried taking hormones, they didn't work. 

So I'm mostly awake all night watching movies on my iPad with earbuds in & by 0500 or 0600 I usually fall asleep if I'm lucky and sleep til about 10 or 11a. When I wake up I may eat a snack but often don't, it takes about an hour to fully get my mind awake then I check did I take my pills yet for the day, if they are still in there I didn't, cause I never remember anymore if I did or not. Then I take them & drink a bottle of water or at least most of it cause with POTS water is important,  Salt & Water, although nothing is going to cure me or fix me these are supposed to help. I lay down and watch TV after taking my pills & think about if I'm gonna do anything for the day, I go into my other room to pray at a private altar for a few minutes sitting of course & then come lay back down. If I feel up to doing my hair that day I go in bathroom & try to do it while standing & push myself & after usually about 10mins I have to sit or stop or rest & then lay down for a while because its so exhausting to even brush my hair & put oil in it. Even brushing my teeth leaves me out of breath for a few minutes, showers typically shoot up my heartrate over 150-160 & leave me exhausted until the next day, I think its the combination of the heat & activity cause it doesn't even matter if i do the whole thing on my shower chair still feel the same way after, I've tried both to compare, it's so frustrating. 

The medicine I take for my heartrate helps a little so it doesn't get as high as it did before but the side effect is it makes me tired so I'm battling that feeling all the time, and my cardiologist just had me increase the dose cause my symptoms were worse & I was have some dizziness & balance issues so the fatigue problem is not better but worse. Ultimately he wants me to be taking 5mg twice a day but I'm just at 2.5mg twice a day right now , I don't know if I can handle 5mg...I'd never wake up or get up out of bed at all 🤔

I've already accepted this condition has changed my life to the point of taking away my nursing career, and reduced my daily activities to 10-15min increments of standing before sitting needed, and that will never change, I'll always be tired, always have to force myself to drinks lots of water, eat lots of salt just to ease my symptoms & thats the way it is. To top it off I have to be grilled by the disability dept of social security to prove how disabling this condition is every review cause they are too ignorant to realize this condition doesn't cure or improve, at least mine doesn't, maybe milder cases get better but mine sure the hell ain't no mild case!

I have a walker with a seat that I use just so I have a place to sit when I need it when I'm out somewhere,  its a pain most times to take but I need it cause I get tired so easy now, I hate even going anywhere, I just feel like a burden anyway😥.

I may eat something around lunchtime but if not will eat dinner with my hubby, he cooks or buys something usually to make sure I eat, cause he knows I forget or just don't bother cause I get distracted or tired. He's the best and great cause this took us both by surprise but he will sometimes say "you know you haven't eaten anything all day" & then I'll go oh shoot okay i forgot,, ill eat something,  so he's a good reminder for me,, cuz he knows I can go a couple days without food & just be fine. I'm lucky to have him as a husband 😊.

All the literature on POTS says its not fatal, yeah the syndrome won't kill you, but the isolation & depression & stress you get put through from the agencies you have to deal with just trying to live & get your disability & get your medication at a decent price & get sent to your specialist in a timely manner, all that stress just might kill you!!! They don't give a crap how much they stress you out over all of that! Athem Blue Cross, CVS Caremark, Social Security disability office, yeah none of them care!!!

Don't misunderstand, I don't want anyone to feel bad for me, feel pity or any of that! I just am expressing I'm tired of a system that values paperwork over the word of a person, and how incompetence runs rampant in every single company responsible for services we rely on these days & there is nothing we can do about it & I'm tired of fighting for every single thing I need for my health. I'm tired & I don't have to be nice, hold my tongue, be politically correct or care about anyone's feelings, I'm 53 years old & I'm tired.