So, I’m struggling

I haven’t been posting: I have been sick and pouring almost all of my energy into my job.

Life goes on. Lily is going through yet another upheaval in staffing, but is doing fairly well, considering. She’s been going to synagogue on Friday nights once a month with our mom, when they have “family” services for Shabbat, with extra music and everything attuned to youngsters and their more-limited attention spans, and she’s been doing great, from what I hear.

I feel like a total wreck. In the last four months, I have had three major illnesses, one of which sent me to the ER, and two diagnostic procedures that kept me out of work (one under anesthesia, the other just a morning of stuff). My doctor thinks I’m not wrong in fearing that there is some other diagnosis in my future, in addition to the fibromyalgia, because I keep getting sick, and that one antibody I seem to have too much of just seems to be staying at that high level.

It’s taken almost everything I have to be able to go to the grocery store and do my laundry while putting in my normal work hours. And this week I had a discussion with my boss that ended with us both realizing that the science my heart wants me to do isn’t the science I’m doing, and it’s best for both of us if I find another place to work.

I’m honestly still in some shock over this, even if I can’t say that it surprises me; the words he used were that I “wasn’t working up to my full potential,” which echoes almost exactly what I’d confided to my therapist a few weeks ago. I had just been under the impression that I was correctly assigning this to my physical health (which appears to be inextricably linked to my mental health), rather than an honest mismatch between myself and the lab I’m in.

I’m feeling horribly alone. I am about to turn 33, within a few weeks of my sister turning 30. (Our dad will be 60 this year!) I feel (mostly inappropriately) ashamed: I have a PhD, I have some wonderful friends who do not live close to me, I have a sister and parents who love me but are far away, and I have a diagnosed disorder. I do not have, as I dreamed at the tender age of five or six, a partner, or children of my own, or a “permanent” job (whatever that means; academic scientists – even those with tenure! – move around a LOT), or even basic unsullied health. Hard not to feel sorry for oneself under such conditions, even though I am loved and otherwise lucky. (No wars touch my home, I have not been attacked, I don’t have much money but I am not hungry, I have health insurance and a safe place to live.)

* Edited to add: one of the weirdest aspects of this self-pity is that I am craving comfort foods. I want to go out and have a beer and a burger, or to eat a warm bowl of macaroni and cheese. I want a really spicy plate of pad thai, or a big slice of chocolate cake, gooey with rich frosting. None of those is available to me. I seem to be triggered into migraines when I eat chocolate. I haven’t been able to eat many spicy foods without vomiting; ditto rich foods, including many dairy products. Alcohol is not allowed with my current medications, and would probably cause me to feel ill and/or vomit, given that I have such problems with my stomach. It’s kind of good – this physical problem with eating many of these foods keeps me from over-indulging – but it’s also really sucky. 😉

One of my “problems” – one of those bad habits I am working to understand and break – is that I am perpetually worried about the distant future. I feel panic rising when I think of myself as struggling to find a good job, because if I don’t have a good job, how can I relieve my parents of worry about one of their children? How can I be a good sibling to my sister? How can I save up and be able to care for her and for myself when our parents are too old to work, or too sick to work – which may come sooner than later, as they both have medical conditions, although that’s a perpetual uncertainty – or when they have died? Right now I can only deal with the problems in front of me: see a new neurologist on Monday and see if he can help me with my still-nearly-constant light sensitivity and weekly headaches, start looking for a new job, keep working as best I can on my current project so that I can write it up and send it to be considered for publication in the best possible journal. Eat and sleep and take my medications, exercise as best I can, and think about organizing Mothers’ Day gifts from myself and Lily.

Somehow: keep going.

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