Just when you think things are starting to feel normal, or as normal as is possible, when WHAM! The next thing hits you. But isn’t that the thing with POTS? You’re just not allowed to feel like you have things under (a bit of) control!
This is the 3d week I’m home sick. I can’t walk, tak or eat without getting REALLY out of breath. I eat a bit of yoghurt (no bits in it, I’m with The Doctor on that one!) and MAYBE a tiny bit of soup…No solid foods at all.
It’s not easy going to just any doctor when you have POTS, simply because they don’t know what it is or how it can affect someone. Just this week a doctor started talking about lying. I don’t even know if I was accused or not, I have no idea what she was talking about or why she even brought it up. Then another asked me if it was all in my head, if I like being taken care of at the emergency room.
I get SO FUCKING SICK AND TIRED of these dumb ass questions!!! I HAVE a diagnosis, but instead of ASKING me what POTS is and what it does to us, I get that. Is it really so hard to say “you know what, I don’t know what POTS is, can you explain it to me and maybe we can determine if that’s what giving you problems?”
On http://www.potsuk.org you can read all about it, they even have a page “POTS for medics” that I will print and bring with me from now on… Not that I think doctors are interested in reading it..
Are you studying to be a doctor, nurse or something else like it? PLEASE Always treat paients/PEOPLE with respect. If you encunter something you don’t understand then ASK. We’re happy to explain our diagnosis! We’re hapy to know someone is listening t us!
Just because you don’t know what we have, doesn’t mean we’re making it up. PLEASE ALWAYS REMEMBER that!
If you have questions about POTS, about having it, about meeting people that has it or working withpeople that has it, wheter you’re a medic or not, feel free to ask me. If I don’t have an answer for you, I’ll ask around to see if I can find someone with an answer. You can try to google it, but really, that’s probably not gonna help you. The reas I’m starting to write more and more about POTS is to help.
My own POTS is pretty bad the moment and I have nobody to talk to. Nobody who can understand or give advice. Nobody to share ideas with etc. And it sucks. You already feel alienated enough…
I will keep writing, and I will get better at updating too!