Two years of diagnosed fibro, and life

It’s February, 2014: two years since my diagnosis with fibromyalgia, and fifteen (!) years since my mom’s diagnosis with MS.

I am depressed. Again.

It comes in waves, this depression. It’s particularly odd right now, because I am feeling stressed out and there are a lot of things that are making me anxious, but none of that consciously feels related to the thoughts that pop into my head. “I hate myself.” “I want to die.” “I’m tired of living.” I don’t; I just don’t feel well and want help.

Granted, I’m living in a place that’s cold right now, and having a lot of storms alternating with relatively warm weather, so I’m having a lot of headaches and joint pain. The headaches, called multifactorial by the neurologist, have migraine qualities and tension qualities and sinus qualities, so I have congestion and vertigo and light sensitivity and pain, pain, pain. Thankfully, if I catch it early enough, over the counter pain meds and careful doses of soda or caffeinated tea can help stop the pain, and the headaches are less frequent than before my current daily medication regime was put into place. Sitting with my legs crossed means knee pain; taking a shower means feeling cold all over and feeling cold for hours. Putting my hair up in a bun, often, means more tension and can trigger stronger headaches. I can’t easily join my colleagues in happy hour drinks or snacks unless I’m careful – any alcohol at all conflicts with my meds and there are foods that cause me to throw up, and some of those vary by my other symptoms.

And yet I am not trapped at home, or on even stronger meds, or in constant pain; my fibro seems to be on the mild end of the spectrum.

My denial – my lingering hopes that this diagnosis is wrong, or transitory and will soon be over – is the bandage that feels like it holds me together, some days.

Right now, I’m teaching. I have a 3/3 load – three classes each semester – and I’ve been released from one class because I was assigned a class three times larger than the other courses in my program. I have ambitious desires, as a college-level educator. I love science: I want others to love it, to stop being afraid of it, to become graceful and even better at it, depending on starting interest/competence level. I fear, deeply, that even this job, which feels like a step down, within the academic hierarchy, is too much for me. The headaches and pain have meant I spend at least one full day each weekend asleep, just to keep up with my body’s needs, and I’m struggling to keep up with grading. But these students: they are so amazing, and mostly, I feel like this is the right job for me, right now. (Amusingly, one of my anonymous student evaluation comments was that I was the first professor that this person had who actually understood disability – the student obviously felt like I was able to accommodate their needs. I am not sure which student it was; I had a bunch with varying documented needs. This doesn’t feel so much like an achievement to me as meeting my baseline. Can you imagine – me, not able to be a teacher who can’t cope with student disabilities?)

The terror in the back of my brain: this job is an annual contract job. Most of the jobs like this one are. What the hell is going to happen in ten, twenty years? Will this be enough to help my sister when my parents can’t? Right now, I still live super far from them – should I try to get a job there? What if I can’t? (Jobs like this that have benefits, or that pay enough to live on, aren’t particularly common, and I’ve not gotten even interviews with the places near my family when I’ve applied for those jobs.)

In some intense emotional discussions with friends this winter, I’ve come to the realization that I have problems understanding what it means to be a burden. That terror? That’s what it is: that I’ll be a burden. Much as I love my sister and would not ever want to call her a burden, her care is still a weight I keep waiting to land on me. If I need someone to help take care of me, how will I be able to take care of her? Turns out I am almost certainly wary of asking for help, even for just processing stress, from close friends whom I’ve known for more than 15 years, because of this fear. (I don’t have a therapist right now, but I have some recommendations, and I’m going to try calling this week.)

Here’s what’s almost MORE surprising than that: reading stories on SibNet’s Facebook page just makes me feel more embarrassed, if not ashamed. How can I be this worried, when Lily’s care has NOT yet fallen to me, and right now doesn’t seem likely to for some years? And at least Lily is verbal and semi-ambulatory, even if her seizures are still daily. She sounds happy, mostly, on the phone, even right before and right after those seizures. Mom and Dad are doing their best to keep her safe and to enjoy her still-growing vocabulary and sense of self. Which is all to say: there are support groups out there, but somehow I still feel alienated from them. (Hey, look, a therapy goal!)

(Does this all explain why I haven’t been blogging a lot? And with that, time to get back to work – it’s Saturday, but there are chores to do and I’m a faculty panelist for a student activity today.)

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2 Comments on “Two years of diagnosed fibro, and life”

  1. I totally know how you are feeling, about possibly becoming a burden on someone someday and so forth. it sends me into moments of panic…I don’t want to ever become that…

    • Elysia says:

      Yuuuup.

      It’s super surreal, for me, since I’ve always assumed I’d be the caretaker, given that my sister is almost certainly going to need me to care for her. Definitely not yet able to process almost any of that yet.


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