POTS is the pits

Featured Image: a slightly scruffy looking black, yellow, and blue swallowtail butterfly, hovered in mid-flight over the flowers of a privet bush.

This week was rough. Because I have taken next week off as vacation time (more of a recuperation period than a vacation) my intention was to focus on getting as many of my support tickets and projects closed – or at least moved as far along as I could get them – as I could. That was completely thwarted by a single issue that consumed pretty much my entire week, but had a deadline already past due. It was not my fault and not my deadline, but I had to see it through, and in the meantime more things kept piling up.

I finally broke down and asked for help. This is something I rarely do and am not good at. There are tier one techs that I can delegate tasks to, but they are as busy as I am and I feel like I am shirking my own responsibilities if I do it. Plus, the types of things that don’t require specialized knowledge that can be passed along tend to be, well, crappy tasks; if I ask someone else to do them, it feels like I am dumping my shit work on them. So I just try to do it all, until I am so overwhelmed that I have to admit I need help, by which time it’s a much bigger mess than if I’d just asked for help sooner.

This was all compounded by the fact that I was really having major issues with the dysautonomia/POTS symptoms for most of the week. Every time I got up, my heart rate spiked (I’m assuming my blood pressure probably dropped too, but since I don’t run around at work with a blood pressure cuff on my arm I’ll have to leave that as speculation) and it made me wary of moving around. I was also foggy and nauseous. I took my Adderall on Monday and it helped a bit with the fog but I noticed the next day that it had also seemed to have taken a toll on my nervous system. Plus, I’d started the new medication I was prescribed for the orthostatic intolerance and if I was taking both meds, there’s no way I’d be able to tell if it was causing side effects, so I didn’t take any more Adderall.

The image below is a screenshot from the app for my Gear Fit tracker; I took my heart rate sitting down, then stood up and took it again, then sat my ass back down because ‘ugh!’ It’s not an extreme example: sometimes it hits 120 or 130 that quickly, but a jump of almost 40 beats per minute is still enough to make me feel crappy.

HR spike
HR sitting, then standing, then sitting.

When I had the recheck with the cardiologist, he literally begged me to take the Florinef he had prescribed. He said that it was absolutely life-changing for people with orthostatic hypotension. I had been wary of it, because of my previous experience with medications that were ‘life changing but not in a good way’ and because the idea of taking a steroid long term, to mask symptoms that only affect me some of the time, without trying to address whatever is causing the symptoms, just doesn’t seem like the right approach.  But with this latest crash, I am desperate enough to try.

I aced their stupid treadmill test, by the way; I don’t think he had believed me when I said that when I felt well enough, I was very active all day long – and when I went in for the test, I was still feeling pretty darn good. About three quarters of the way into the test they said they’d already gotten the data they needed and I could stop if I wanted to, and I said I was fine to just keep going. I never broke a sweat and never got out of breath. On the recheck he jokingly told me that I “broke their treadmill” and said my heart was perfectly normal. I was, however, more than a little frustrated when I found out that he’d never been given the logs I faxed over from my DIY POTS testing; I went home and printed out another copy and hand delivered it. Damned if I had almost fainted for nothing. 😉

It takes a while for the Florinef to start working, and for it to help me retain salt, I guess I actually have to consume some (I don’t add salt to my food, as a rule, and don’t eat a lot of foods that have a high sodium content) to begin with, so this morning I sprinkled a bit of Himalayan pink salt into my smoothie and my coffee. It made for an interesting appalling flavor but maybe if I try smaller amounts I’ll get used to it.

I’ve got a whole week ahead of me to sleep as late as I want, nap whenever I want, and do as much or as little as I feel like doing. My only set goal I’d like to accomplish is to finish transforming my bedroom from the sickly yellowish variation of ‘landlord beige’ it currently is, to the soothing ‘silver blue pearl’ shade I bought. I started on it before the invasion last Sunday, and it is going to look fabulous, but ‘me on a ladder’ hasn’t been a great idea since then.

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