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.

Florinef flu: FAIL

The same thing happened when I tried Florinef again, even at a tiny dose. Felt great for a few days, felt OK for a day but didn’t pee hardly at all, and then felt horrible on day 5. I gained 4 lb overnight (expected, because of the no-peeing thing the day before) and felt like I had the flu and itched. My joints ached and I had body aches like with the flu, I felt exhausted, and I itched all over, including having a scratch in my throat that kept making me cough like crazy. I took some Vistaril and felt a little better. I don’t think it’s possible to be allergic to a steroid, nor to become allergic to one after 5 days exactly, but there you go. It seems safe to say this is not the drug for me.

Can I POSSIBLY take ANY drug and have a normal reaction to it…either I react extremely to a tiny dose, or I need a horse-sized dose for said drug to affect me at all. I’m not right, pharmacologically.

Today I am having a bad day so far and I just got up; I had to pry myself out of bed and am so tired I am having my “too tired to function” thought processes. Those go like this: I could call in sick. I could call in dead. I could go back to bed for 28 minutes before I absolutely have to be up. I could skip my shower and sleep another 15 minutes. I could rearrange my schedule to start work later. I could just go back to bed and put my phone on Do Not Disturb because who cares if I get fired, I’m never going to be able to work anyway. Yet here I sit, not going back to bed.

The dizziness and falling parts of POTS suck for sure, but the fatigue is what really gets me. It’s what motivated me to find out what is WRONG with me. I wish I could explain this fatigue, because before I experienced it I thought “fatigue” just meant really tired. It is WAY worse than that. It’s both mental and physical; it’s having your brain refuse to handle simple thought processes and suspecting you really may be unable to get up. And when you do you almost wish you hadn’t because you feel. So. Exhausted. I can’t concentrate on anything when I’m feeling this way, and I hate the feeling. One time I took Phenergan and couldn’t really wake up for 32 hours, and it’s similar to that feeling, just like fighting off being drugged.

I’ve learned that when I feel this tired I need to rest. If I don’t it will get worse. I run the risk of ending up in bed unable to move even if I’m able to motivate myself to try it. Problem is, I’m trying to lead a normal life so I have a 50+-hour a week job for which if I miss a day there’s no one else to do my job, so I have to double up when I get back. It’s not good at all to miss a day. So just as I’m doing today, I push myself. maybe I’ll be all right tomorrow and maybe I won’t.

Sometimes I get away with ignoring my symptoms and proceeding anyway: usually I don’t fall when I feel like I might. Usually I’m able to get through my day when I feel tired like I do right now. When I do end up on the floor or in bed I castigate myself. “You KNEW you were having a bad day and should have paid attention!” Well, that’s true, but if I coddled every single symptom I would never do anything.

Very frustrating.