this is real life!

What a week it’s been — not even a week, actually, because I know I blogged Saturday. Guess I’d better update y’all. TW for severe emetophobes.

It turns out I can’t stay awake without consequences. Friday and Saturday were pain and fatigue days, though I made Saturday work for me with the help of a lot of caffeine. For me. 53 mg. Which, I know, is not quite a cup of coffee, but my metabolism is weird and little changes make a big difference. Like the fact that I also pulled back on Klonopin by .125 mg to fight daytime sleepiness and it seems to be helping.

But it’s not helping enough. It didn’t give me enough brain to function after partial was done for the day… most of the days. Not without serious naptime. It’s kinda bad when I’m napping for three hours and then sleeping another eight, with maybe five hours awake in between. I wanted to make that stop at some point, damnit. While I had to do a certain amount of emotional work, like tolerating distress — this is my week for distress tolerance, see below — it was not as much as I expected to be doing. I don’t feel as if I processed very much, and I wasn’t there to do that. I was there to get some coping skills and referrals to other places, which I did. I guess I’m a quick learner and my timing was superb, because I got the hardest and most crucial stuff done in the space of six days in-program. So I discharged early.

Partly I did so because the staff seemed alarmed at my gynecological status (“You haven’t had a period in how long?”). They pointed me at my NP, Heather, who is fantastic and I hope she sticks around. So I went in, we talked about the alarming uptick in fatigue, I got reminded that oh look, there’s CFS and fibro in my chart, and while we were at it, we talked about that rogue Lyme ELISA result from February 2012. I gave four vials of blood for six panels of testing, one of which was indeed a Lyme C6 peptide antibody, and it came back equivocal. Normally this means you’re working up a fine case of Lyme but you’re subclinical. I have the sneaking suspicion that when I retest, at Nurse Heather’s preferred time because she knows better, it may come up equivocal again.

Why?

Before this blog was a dirty thought in my mind, I spent a summer out of doors. 2008. Yes, I know. Astounding. Me, grubbing in the dirt. But I really enjoyed tending the garden we had that year. All that time I spent where the deer ticks live, I also spent taking ticks off the cats with a thin plastic baggie or glove between me and the tick. Eleven and I also spent time hiking in Mendon Ponds when the weather allowed. Basically, I did a lot of things that make it real easy for a girl to get Lyme. Oops. And then I started working at $utherland. And within four months of my start date I was at my then-PCP’s office asking why the hell I felt like I’d gotten a flu I couldn’t shake, one that had lasted absurdly long for an infectious disease. I did a course of penicillin or something in that family, which… didn’t do anything. I spent three months in bed on short-term disability, after which point I lost my job because $utherland thinks working from home is a privilege, not a reasonable accommodation, the bastards.

Nothing’s been right since then. I figure that was when it hit me, when my immune system fought and the antibiotic maybe kicked a little ass, but not enough to really fix anything. My body is hardcore, y’all. I think it gave Lyme its marching orders — not without residual damage, unfortunately, but it’s a line in the sand between okay and not. It’s proof, to me, that the pain and fatigue are not psychosomatic manifestations of depression. Were that the case, I would have been that sick in high school, before effective treatment. I would have been a lot sicker after Alfred; most of that can be attributed to yanking my BMI firmly into anorexic range and keeping it there. Incidentally, Nurse H told me I couldn’t expect periods until at least BMI 18, and I’m just now breaking it without an estrogen-progestin pill. a) I was forcing my body to bleed on the bigger pill when it did not have the resources to do so and b) I might finally get some natural periods back. Body, I am so sorry. You are amazing and I have not appreciated you for what you are.

Eight-nine years out from plausible infection with Lyme, I am equally plausibly still seeing antibodies. I may be equivocal for years to come. But I don’t think lightning strikes twice, using two different labs and two different assays, and I’m hearing very familiar hoofbeats. Also, I need to eat more often, because my blood sugar trends low (and so did my A1C).

I participated as fully as I could during the program. I did not let myself down the way I did at RGH. I’m proud of the six days’ work I put in. I even played nice when I could have gone off on someone for a legitimate reason, albeit a really picky one. Now I have to organize my life in such a way that I can continue to meet obligations while I’m working on my brain and my body. I left early, but I’ve been referred for a CBT skills group (subtype distress tolerance) and I made an appointment for next Tuesday with a therapist. A real one, guys, not one who’s going to graduate on me.

So. Last night. My first night “free”. That… could have gone better. I had reason to use my distress tolerance skills. They sorta worked. Kinda. I accepted what I couldn’t change. I accepted it was what it was. I looked for my people, who were right there, and instead of demanding my world shape itself to me, shaped myself to it. Waited for my poor dad to feel like working on the connection to this desktop; took the laptop upstairs when I wanted to have some time in my hidey-hole, because its Internet was working. Needless to say, that emetophobia thing is pissing me off, because I feel like I should have been there yesterday to help more and I couldn’t because I was a quaking mess on the sofa. I did manage to tell my clusterfrak traits to shut up long enough to actually be worried that my diabetic dad was having flu complications today. I may not be keen on catching what he’s got; on the other hand, I might have brought it home! For all I know it really was bad salsa that made him hurl in the entry and on the stairs. Also, the sight of his own puke probably made him puke again for funsies. Poor Dad.

But hey, I found a great AU Harry Potter fic where Aunt Marge is actually a nice country cottage dweller who’s grieving her dead fiancé and breeds dogs — and becomes the champion of her little runt nephew. ❤

Today. Today was productive. Like I said, appointment made with a therapist. Test results interpreted and spoken-about with Nurse H. Internet back up, keyboard and mouse disinfected using an alcohol wipe, and then hands disinfected. I slept in ’til 10, because yesterday’s chaos knocked me for a loop. I thought I would nap today but I was wrong! I just needed a bit of eyes-closed thinking time in the quiet and the warm. Considering that in past… weeks, probably… I would be a complete mess, I’m going to count this as progress and also tout the merits of old-school antipsychotics in low doses for emetophobes. Holy wow, is Compazine good to me. Necessary weight gain + anxiety relief = I can still live my life while I’m dealing with what scares me. I love it when hunches turn out to be right. I have a few days of here-and-there writing to transcribe from the notebook I pressed into service. Yeah, turns out I can write on paper during breaks from therapy sessions, and it’s not bad writing. I’m talking about my feelings more, not guarding against any possible breach of the walls. All in all I’d say I’m doing pretty well.

I plan to have my class ready on time for College of Three Ravens. Mostly I need to finish filling out the forms for my fictional clients, then have the color ones copied over about 20 times at Staples. The writeup is easy; you do this, you do that, don’t ignore this field, for the love of God leave this box blank, etc. It’s going to follow a class apiece on submitting names and armory, so think of this as the class you come to if you’re going to be doing the forms for yourself or for a friend. It is not child-friendly because your child is not going to be able to fill out these forms until it becomes an adolescent, and may get so bored that it puts up a fuss. That’s just the nature of bureaucracy. Everyone puts up a fuss sooner or later when it comes to forms. Then it’s back to archivist duties and preparing the last round of letters on my watch before I step down as Garnelian. No rest for wicked little Herald Skippy. 😉

Boy, I hope you’re all having a calmer time of it than we are…

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