Friday, May 02, 2014

On Illness and Identity

Ever since I was pregnant with Tatoe (he's two and a half now), some moderately bad health things have been happening.  They are mostly stabilized (solution 1: don't have any more children), but I have also, for the last three years, woken up in pain somewhere between every day and twice a week.  This has done bad things to my little hamster brain.  I don't know what the proper psychological term is; some disastrous mix of aversive conditioning, catastrophizing, and learned helplessness.

Some of it can be managed by being incredibly strict and rigid - specifically, food.  Words can hardly express how unpleasant I find my current relationship with food - one of fear, resentment, and boredom in equal parts, with occasional sleepless red-ant-gnawed misery, combined with a reasonable but socially awkward reluctance to eat anything anyone else cooks, ever.*  I am always afraid it is going to get worse (even though it's not, right now) and then I literally don't know what I would do.  I feel helpless because I have a realistic belief that this may never get any better.

When I am in pain, I fear it happening over and over far out of proportion to the actual pain.  As I've had histamine reactions** to at least two opiates, my pain is never 'adequately managed'.   I am afraid that my image of myself as a strong, healthy, competent person is wrong, has changed, will never be true again. I try to tell myself that my fear spiral is not rational.  I've mostly stopped getting sick all the time.  That's better.  I don't wake up in pain every day.  I have less trouble sleeping.  I stopped losing weight.  That's better too.  But still, every time it gets out of equilibrium, I have an irrational, panicked fear that it will never go back.

(I am not actually as depressed as this sounds.  I just had a really bad week.)
* Aside from my mother, my sister, and Nicole, who lives 900 miles away now.  
** It turns out that "I want to scratch my entire skin off and I cannot sleep for more than five minutes" is actually worse than just being in pain.


  1. I get that a little bit. (I had similar issues-- but much less intense-- when Kiddo finally started sleeping through the night) I have no advice, but many hugs to give.

  2. I'm sorry you've had a bad week. I'm convinced stress makes your health worries more pronounced, so I have hope that you'll feel better once the house issues are settled.

    C1 is a climber (always has been), and this week was monkeying around on the slide, fell, and broke his arm. I'm a little on edge, and have found myself shouting at them for completely normal brotherly wrestling. After a short session of yet more monkeying around on the playground, I shouted, "I'm going to take you home, roll you in bubble wrap, and keep you there for 6 weeks!" Alas, I am out of bubble wrap. I'm sure the conditioned reaction isn't anywhere near what you're feeling regarding the food/pain/sleeplessness issues, but I sympathize.

    Also, I wish to mail you an inordinate amount of interesting, safe food, but I fear that is as unlikely as a C1 rolled in bubble wrap. Perhaps I will settle for mailing you more membrillo.

    1. Children! No sense! (Mine have a total of three bloody knees, a big raw spot on a hand, and a sizeable bite mark at present.)

  3. I get what you mean. I find myself being defined by my stroke sometimes. I hope that things improve greatly and quickly and you can get back to who you want to bed. Hugs to you.

  4. Anonymous2:13 PM

    I'm so sorry. I think of this horrible thing you're going through (except there IS no THROUGH, just on and on) a lot. It's insane. The new york times has a medical mysteries thing--perhaps we should submit you. SURELY there's a magical cure and your life will soon be magically fixed. RIGHT?

    It must feel so hopeless. Again, sorry.

    1. I think the main problem is we DO know what it is, but there isn't a cure. If only someone would come up with one.... ack.

      Thank you for the sympathy. Sometimes I think I just need to be sad and angry about it.


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