RubywPOTS

I recently experienced one of the worst flares of POTS I have ever experienced. I missed work for days and could not walk more than three minutes across my college campus without stopping to sit. My service dog was working overtime and I could not even play with her to reward her for her hard work. I struggled to cope with the difference between my capacity when I am in a flare and when my POTS is well managed. When my POTS is well managed, I can run a mile on the treadmill in under ten minutes and lift moderate weights! When my POTS is well managed, I can party like a regular college kid late into the night (with lots of salt and a little caffeine, but still)! But when I am ill, I can't even stand in line long enough to get myself food. I started to realize that when I am ill I need help getting myself places and because of my being on a college campus, this may mean a handicapped parking spot (because without one, my car would be a fifteen or twenty minute walk). I feel confused and guilty for thinking I need this because sometimes, I am healthy. And sometimes I could run the fifteen minutes, but other days taking the stairs is equivalent to thirty minutes of sitting on the ground coping with an episode. I need assistance getting to Dr appointments and need a car to take my dog to the park for days that I cannot walk or play with her myself. On days that I am struggling, I need transportation that isn't my own two feet, but I feel guilty even considering a disabled parking permit when there are days that I can go without it... What do I do? Has anyone else coped with vastly different capacity or quality of life when you are experiencing episodes and when you are not?

Absolutely! It was so embarrassing to me when I would wake up next to my boyfriend and my side of the bed was damp because of night sweating! I thought I was broken until I finally realized it was a symptom of POTS. Then I realized I was broken LOL but now at least I know why!

I have a service dog and she really helps! I tend not to faint but I dose in and out of consciousness and it is very jarring to wake up disoriented with brain fog. She is medical alert to avoid sudden fainting sessions, but mostly she is super grounding when I wake up and the same fur, smile, and pressure on my legs is there every time. It can definitely be embarrassing though. I get that and it is really hard sometimes. It helps to find friends who understand. My friends jokingly know me as the "girl who always has salt" and when I grab the wall or say I need to sit down or need water, they are supportive and my close friends know what to do. When I am alone and in an episode, I tend not to worry about what people think though. It's hard, but you have to do what your body needs.