On victimhood

QOTD: The issue is not whether others see or care. The issue is whether we see and care about ourselves.

This caught my eye because I seem to care unreasonably about what other people think about how I feel. I get so mad when I am blown off by others, when they think I’m making it up, and when I don’t feel like they are paying attention to how sick I feel. I think in some ways this is understandable and unavoidable: when you feel like death you do want those close to you to acknowledge you feel bad. Witness any man with a cold.

But the quote makes sense. What point is there is convincing anyone else I have pain? The real problem is convincing myself, which sounds ridiculous until I consider how much time I spend acting like I am just fine and therefore not addressing what I need to address to NOT feel sick. For that matter I spend an awful lot of energy convincing others that I am NOT sick. I’m thinking of all the times it would be hard to explain for me to sit down when I need to, so I force myself to “push through” dizziness and hope that I don’t fall. Or weeks like this when I feel especially bad but don’t have time to rest enough, so I try to ignore my symptoms and flog myself through until I can have a day off to sleep all day.

It seems to make more sense and have the potential to result in more balance if I focus on convincing only myself of the gravity of my pain and symptoms and treat both appropriately. I know this sounds like emotional kindergarten, but that’s where I am most of the time. Especially with this chronic illness thing. My brain defaults to denial for almost every problem I’ve ever had, so unsurprisingly I simply revolt against BEING sick. I’m not sure how I go from that to being pissed that my friends don’t understand how bad I feel, but I manage it.

I don’t have a theory yet about doctors. I feel like I do need to convince THEM that I have whatever issue I’m there for, and I get really mad when they blow me off. The entire medical institution blew me off for years over what’s turned out to be POTS, and that still makes me angry. If you don’t have an easily identifiable cause for a symptom they can’t SEE, then their default is that it’s psychogenic. I understand they get frustrated when they test for all the obvious things and can’t figure out what’s wrong, but I don’t think that justifies their blowing me off. I’m not asking for drugs; I want to know WHY I am so often exhausted and hurt all over, in hopes that that thing can be fixed. (I’ve pretty much decided I probably have some autoimmune Thing that is hard to diagnose, because that situation seems pretty common and occurs all the time with POTS in particular.)

Bottom line is I need to become a self-care ninja and stop giving a fuck whether anyone else thinks I’m justifiably sick or not. Today I am exhausted and ache all over, so I know I have to pay really close attention to not pushing myself, to eating properly, and to resting. To hell with what anyone else thinks about it. If I get dizzy and need to sit down, then I need to sit down. That last part is the hard part for me when I’m working. I want to look like superwoman but am definitely not. I usually CAN push through dizzy spells without falling, but why take the chance? I’ve got to rest when I can and get really crazy and take a lunch break, for starters. We will see how this goes.

Bad POTS day

Yesterday SUCKED. I’m going to describe the suckitude in case anyone wonders what POTS is like. I knew it WOULD suck because I woke up yesterday feeling like I’d been flattened by a steamroller.

First, my vital signs. My BP apparently was relatively OK all day. I didn’t check it much because I was super busy, but I did a couple times and it was all right, even had some pulse pressure. My Watch reports that my resting HR was 67 but the range was 57-179, avg 95. To put this into perspective, on most days my HR runs 75-85 when I sit down awhile during the day (doesn’t quite reach the resting rate), and when I stand up and walk a little ways, it goes up to 120. That isn’t normal, and it is not bad POTS, and it does make me feel pretty tired by the end of the day. But by no means is it catastrophic. If I do any real activity (sweeping the floor, folding laundry), it regularly gets to 130 or 140, and at that point I feel pretty bad. Yesterday if I so much as TWITCHED it went to 140 without passing Go. Walking slowly? 150.

The symptoms that silliness got me included my vision going speckly and my feeling lightheaded every time I had to walk anywhere: that means I spent the whole tiresome day terrified I was about to fall over. I felt bad enough I was afraid of actually fainting, which I haven’t done for a long time. Several times when I was just sitting and talking, my Warning Feeling stole over me…IDK what it is, but I know what it feels like. I get hot all over, my stomach clenches like when I’m about to barf, my brain ceases to function, and my head and all my muscles feel heavy and really weak. Time slows down and my hearing gets muffly. THIS SHIT IS DISTRACTING. And the fatigue. With those heart rates my body seems to think I’m logging long hours running down the road, and I feel as if I have been doing exactly that. It becomes imperative that I go home and crash. Which I did, when I noted the HR of 179. That? Is a good day to make it a shorter day.

I am grateful that as POTS goes, I seem to have a pretty mild form of it. I am usually able to function normally or at least it looks that way from the outside. I am always grateful that my BP does not seem to drop. Hang in there, BP! I’m pretty sure if it started to drop as my HR increased, I WOULD faint all the time.

Gratitude notwithstanding, days like yesterday befall me seemingly randomly, which sucks. I can’t really plan a busy day which is not the current day, because I have no idea whether I’ll be able to do it. I haven’t been literally unable to get out of bed for a couple of months, but kicking yourself through a day even though you feel like death feels horrible even if you are able to do it. I have some assurance through pattern tracking that once I have a day that bad, it is necessary for me to lie pretty much in bed for a day to recover or those days will just continue. I have this weekend off, so I will be doing that. PARTY TIME. Not.

So yes! This sucks! I’m glad that whoever is stabbing my POTS voodoo doll doesn’t do it every day all the time, but I never know how I’m going to feel when I get up in the morning. Imagine if you had a flu you couldn’t EVER shake. Some days you felt all right but others, the flu symptoms randomly got bad again. Everyone knows what it’s like trying to be up and around with the flu. POTS is that bad. Some bad days are inexplicably followed by just-fine days, but I can tell already that today I’d best plan as low-activity a day as I possibly can.