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.

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.

Needed: life balance

I have NO balance. I have a pretty busy and demanding job involving living humans, and it doesn’t leave much room for being sick. So the same thing happens every few months: I work too hard without resting like my body demands, and then I end up feeling so bad I kind of drag myself through the day from morning pillow back to the same pillow at night. Things slide. I don’t eat right because I’m too tired to cook, I don’t exercise because ARE YOU KIDDING ME, and the household falls into disarray.

I tend to prioritize work because it involves hard deadlines. There is no balance with my health. I try to do all the stuff I know I need to do to stay somewhat healthy and have some energy, but if it’s a matter of meeting a nonnegotiable deadline vs cooking dinner, dinner will unvaryingly take a back seat. And that usually works for a couple of days before I crash.

I’m having to take a hard look at my job. Overall I like what I do, AS LONG AS it’s manageable. Unmanageability comes in cycles, though, and my supervisor has no plans I can see to ever change that. I just watched her burn out another employee and not even say good-bye to her when she left, so I know I’m totally dispensable in the same way. I have no reason to think anything OTHER than her goal is to get the immediate Things done and screw employee retention.

Logically then I think anyone would wonder why I am doing this to myself. I find the devil you know is often better than devil you don’t know; why leave a job I typically like for one that may be even worse? The grass is not always greener elsewhere. I think MOST bosses are very happy to work people into the ground. This one tolerates me being sick, somewhat. That isn’t something to just toss away.

It depends on the day, really. Some days I’m so exhausted I’m just hatefully angry and ready to walk out. Other days I feel all right and as if I can handle things. This morning I read

We do not have to act in haste or urgency to relieve our discomfort.

I need to ponder that because my favorite time frame is “right fucking now.” I want things solved immediately. I want assurance that I will feel comfortable at all times, and I want that assurance RFN. It never happens that way unless I do something stupid, like rage-quit.

Working full-time with a chronic illness is kind of a bitch, and I have not figured it out yet, at all. When I need to rest it sometimes gets to a point where my body will rest whether I’m on board with it or not. I don’t know how to make this work other than to be really vigilant and not get to that point. And I don’t know how to make myself rest along the way when there are a bazillion things that all have to be done by a certain time. I’m not entirely sure I can figure this out or make it work. The dizziness and falling I can kind of work around, but the fatigue, I can’t seem to.

Right now today I feel like walking out would relieve a lot of discomfort: I could return to bed and sleep for days until I felt better. But that would be acting in haste and urgency and I eventually would feel better and regret what I did.