Update: December 16th

The funny thing about any chronic illness is that I’m never sure what should be blamed on mine, and what shouldn’t. Assumedly, for instance, other people find themselves suffering from severe insomnia and a wee bit o’depression this time of year. Since my disease is rare, they can’t all be closet BJHS patients.

So do I blame my complete inability to not only go to sleep, but to actually go to bed on the disease? You see, not only do I find it very hard to fall asleep (even on my meds), but I also find it hard to get into bed. This has gotten progressively worse over the last few years. It’s as if my nervous system wakes up the more tired I get, and by the time I’m exhausted, my brain is as chattering and restless as a two year-old on speed. I’ve always had this problem, to some degree, but right now it’s downright debilitating. If I go to bed too early, my mind screeches at me for hours. If I go to bed when my mind has finally worn itself out, then I don’t get enough sleep. But my mind’s relentless chit chat bears no relation to how tired I actually feel, so even as I sit there, exhausted to the point of nausea, I’m still awake.

Ambien is, obviously, designed to combat this, but I’ve been on it too long and need to switch meds. This requires a trip to the sleep doctor, which I’m just going to have to make. Bummer. I’m soooo tired of doctors, even though my sleep specialist is excellent and knows my BJHS doc very well.

Then there’s the deep blue funk I’m feeling. Some of it is no doubt a product of the season, and obviously the lack of sleep doesn’t help, either. Then I suspect that part of it is from the Lorazepam, which is, after all, a sedative. One of the side-effects of the drug is depression. So I’m thinking it may be time to talk to my doc about that, especially as generally this drug is counter-indicated for long-term use (though I’m on a very low dose). That said, I’m always funky in the winter, and I didn’t feel this way earlier this year, when we had sunshine.

So what to do? I don’t really like taking any medications. I also suspect that things will improve as I get to sleep more over the break, and then as the seasons change. I hate going to the doctor. But I’m also miserably tired and fussy right now.

Being sick stinks, I must say.

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