Postural Orthostatic Tachycardia Syndrome

Try saying that when you’re tired πŸ˜‰

That’s what I have. But what is it?
Easiest is if you go HERE to have a look.

My symptoms? Almost all of them..

Since there are so few of us with the diagnosis, there’s pretty much nobody to talk to.
50% of those who get POTS recover,. 25% stay the same, and 25% get worse. I belong to the last 25%. I don’t know how many are diagnosed with POTS, but I do know that many more have it. It’s NOT easy getting diagnosed!! It took me about 20 years to be taken serious.. And that only happened because a nurse forced the doctor to send me to another cardiologist to do a TILT table test. Now I have the very best doctor I could possiby get. So, good things can happen. Sadly many of us must wait way too long for it to happen.

I only work 50% (4 hours/day, 5 days/week), that’s all I can. Now, to be honest, I should probably not even work that much. But how else am I supposed to get any money?
We have great healthinsurance here in Sweden. IF you have the “right” sickness and IF the people behind it are in a good mood. There are even people dying from cancer that have to go back to work. Some have even been asked to send in papers on when they are expected to pass away. That’s NOT a joke!! Thankfully, I haven’t heard much about that particular issue in a while, so I hope they don’t do that anymore. But these Days nothing would surprise me.


As you may have seen in previous posts, I’m currently in pretty bad shape.
I can walk about 5 meters then I have to stop and catch my breath or I will get dizzy and pass out.
I can say about 5 – 10 Words and then I have to pause to Catch my breath or I’ll get dizzy.
I can hardly eat anything because I get so out of breath ding so… I eat no solid foods, I’ve tried and goodness me that wasn’t fun! I’d like you all to know that I could KILL for a cheseburger with extra cheese and jalpeΓ±os!! Maybe not kill, but… πŸ˜‰

Every now and then my POTS will get worse. It will be like that for a week or maybe a month then it will return to what it was before. This time I’ve been getting worse since before Christmas and it doesn’t want to get better. Since january 13th I’ve been pretty bad.
Right now it looks like this is something I have to learn to live with. The big question now is, HOW?

I know my body, I know how it reacts to things. But how do you learn to live with not being able to breath properly if you’re eating? Or when you’re walking? Sit in a wheelchair? Who’s going to push me around? I’m too exhausted to do it myself.

Somehow, I will figure things out. I WILL find a way to carry on. (And I would be real happy if I did so before monday because then I have to get back to work.)



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