Can’t work this week

I’m feeling shitty because after feeling pretty horrible for the last 2 weeks, but managing to go to work, I now feel so horrible that I couldn’t work yesterday and have had to call in again today. Fucking POTS and/or carcinoid and/or whatever else is conspiring to steal my life. Dizziness is so severe I can barely just walk around in my house, and I have a TINY, tiny house. Brain fog is so horrible I can’t even read a book.

It sounds like it would be nice to have an excuse to take off work, but in reality the suck factor is fairly severe. I can’t do anything. I’m tired but can’t sleep all the time and don’t particularly want to sleep my life away anyway. I’m too dizzy to even sit up for very long, and having to lie down when you’re not sleeping is a paramount example of boredom. I’m so pissed at my body. I mean just get up and DO something, for crying out loud.

Is this what chronic illness does to you? Just steals away your life, a little bit every day? I’m railing against just being unable to do things I feel like I should be able to do.

On the carcinoid front, I had more labs drawn yesterday so just more waiting on those results. My PCP sent a referral over to the nearest Big Medical Center to see if someone there has any ideas. I did finally get a glimpse of my own “flushing,” which until then I’ve just heard about. I felt like I was about to fall over and felt hot, but was safely seated, so I took a selfie and sent it off to a coworker. She said yes, that is what people are talking about. I thought my whole head must be red, but it just looks like my cheekbones and chin are stained red. It does look pretty weird. I’m a very pale person normally. But it really doesn’t look all that dramatic to me compared with what I was imagining when they described it.

So here I am, awake and with nowhere to go and an empty day facing me.

Health anxiety/obsession

I’m tired of myself. I constantly think about, worry about, and talk about my symptoms and concerns…which is largely why I started this blog, actually. I don’t want to be totally tiresome to the people who still listen to me. 

I need a happy medium. One where I think about my body just enough to keep it propped up, fed, exercised, and appropriately hydrated and rested, but where I am not thinking about, or constantly needing to think about, how I’m feeling and what it MEANS. I spend too much time consulting all the things my phone and watch track and worrying about my blood pressure/blood sugar. I do need to keep track of all that stuff, but at some point, which I believe I’ve passed, it’s not helpful. 

I *know* my heart rate goes up when I get up and move around. I know my pulse pressure is often really narrow. I know that probably these things contribute to the symptoms I have, but whether they do or not at any given time does not really change anything. I seem to believe, deep down, that with enough careful obsessive self-observation I will finally figure out exactly what is going on to cause the symptom in question. That belief is probably false and leads to a LOT of wasted time. 

But I can’t just ignore all of it and don’t worry, be happy, because if I fail to accurately monitor how I’m feeling, I will end up horizontal either immediately or eventually for some span of time, feeling like hell. I have legitimate concerns that cause me to ensure I’m not about to kill off my kidneys with high blood sugar or hypertension or collapse from low potassium, and it’s indisputable that if I fail to rest when I need to the consequences are dire. When I ignore how I’m feeling and push through, it goes badly. So I would like to develop a Goldilocks version of self-monitoring. Not too much, not too little, but just right. 

It’s as if, after spending months if not years lying around feeling totally at the mercy of unknown forces, now that I have a diagnosis that explains what happens to me, I now feel overly dedicated to figuring out how to CONTROL IT. Well, that probably isn’t possible. Railing against fate has been replaced with trying to control EVERYTHING. Not helpful. 

If I have a good day, I wring my brain out trying to figure out what magical thing I did or did not to cause that, so I can do it again, and the converse applies to bad days. Best I’ve figured out so far is that mostly shit just happens some days, and I may never know why. 

Also on my wish list: figuring out how to avoid feeling dimly frightened most of the time. I’ve had two bad, bad falls in the last year, one of which resulted in a broken hand. Those experiences seem to have left me constantly anxious and hypervigilant almost all the time. I detest, for example, just having to cross a concrete parking lot. Because that would be a hard surface to fall on. I get all tense and experience a dozen falls a day in my head, most of which never materialize. Again: lots of wasted time and energy. Do I need to exercise caution about falling? Absolutely. Do I need to let it take over my life? No. 

I seem to have accepted having a chronic health problem that needs daily TLC. Now I need to accept that after I’ve done what I can to provide that TLC, I need to let go and live my life as best I can.