Wednesday, 12/13/17, 8:44am
Well. I have not been writing much but that doesn't mean there hasn't been a fair amount going on. I'm doing... ok, but also waiting for a new medication to kick in. So you know, that's always, well, the waiting game. My treatments have gone back to once a week now, which feels a bit better on my brain. Going more often is definitely more taxiing.
I've lately been reading, a lot. That has been quite nice, I must say. Nasser thinks this is a sign that I'm doing better, because before I kept making excuses for not reading that my brain just wasn't doing well enough. Although I think really, for awhile there, I just wasn't interested in reading, maybe. Anyway, lately, I've been re-reading the Harry Potter books, which is a lot of fun. I'm currently on the 5th book, so going fairly quickly through them. They've been feeling great on the imagination, and honestly, there's a fair amount I don't really remember from reading them the first time.
I haven't been doing very much other than reading lately. I'm trying to keep my expectations lower for what I get done every day anyway, since that seems to be crucial to not having emotional break-downs. I'm still trying to fit in exercise sometimes, although I'm certainly not making it a daily expectation. I got in a super short run the other day, a bike ride several days before that. Today's a treatment day though, so no exercise planned today. Beforehand, I'm fasting, etc so I don't really want to make myself hungry or anything, and then afterward, I'm exhausted, cuz you know, I will have had a seizure.
I've actually been doing better, headache-wise, post treatments. One thing that helps, is my consumption of black coffee (which counts as a "clear liquid") the morning before treatment. (Because I'm clearly addicted to the caffeine). The other thing that helps, is after my treatment, while I'm recovering in the recovery area, waking up and all that, they give me a dosage of the really strong pain meds, as a preventative. And they tell me to take another dosage 4hrs later regardless of whether or not I have a headache, to keep preventing it. It's worth it. Cuz before, I'd have a headache through the entire next day post-treatment. And that sucks, big time. Gotta love the side effects of this treatment, right???
I told Nasser this morning that I keep having a lot of anxiety the mornings before treatment. He told me that when I was going through "acute" (3x a week treatments for a bunch of weeks) I got to a point where I stopped having the anxiety. It was a treatment day, and I was just like "eh, whatever". Hah. Although he thinks that was more due to the cognitive side effects of "acute" than anything else. Cuz really, I don't remember that phase much at all. Literally my memory of 5, up to probably 8 or so week of my life this summer is just gone. There's bits and pieces that I can kinda remember. But very, very little. It's a weird feeling, for sure, but also expected. Man, seizures, right?
In general though, since having this mini-acute phase for 2 weeks-ish, I think I've been better. If the reading is any indication I guess. But in my Daylio app, my mood-tracking app, it's been a lot of "good"s, fewer "meh"s, and much fewer "fugly"s or worse. Which is definitely nice. And I've been doing a better job of just keeping my expectations lower. I'm still going through difficult enough "maintenance" which treatment, and it's ok to lower expectations because of that.
It's weird to be going through this holiday season with treatment. I have done very, very little Christmas shopping, which normally I'd be more stressed about, but I'm not going to let myself go there. Nasser is going to help me a ton anyway, as I know to expect, haha. Honestly, he's been amazing through all of treatment. He makes dinner most days, he does most of the grocery shopping, he does bedtimes way, way more often than I even help, he's there to support me every single step of the way. Which is awesome. I mean, of course, he's working these days, that leave of absence he took from work only lasted so long, and was all of acute, so I don't even remember it much, damnit! But he certainly comes home early if needed, he gets me support in the neighborhood or from family if needed, he goes to all the important doctor appointments with me.
Sigh. I feel really lucky for all the support I have, that I have had through this entire treatment. I got an email from a choir member last night, asking how I'm doing and how treatment's going. I haven't been in choir this season, because of treatment, but it's so nice to be thought of. Some of the other neighborhood parents ask me how I'm doing at the bus stops in the afternoon. My parents are there to drive me, pick me up, take care of kids, support for everything on treatment days, and they did a ton for me in the transition between acute phase and maintenance phase, when I still needed 24/7 all the time. I get random calls from out-of-town friends sometimes, actually there's a local friend who sends me support texts every so often just cuz. My friends and family nearby, have done so much. All the support touches me beyond words, it makes me teary and shake from the amazing feeling it gives me. All the difficulty that this treatment is, how hard it is to go through all this, it all feels worth it when I see all the amazing, incredible support I have. All these wonderful people remind me of what I'm fighting for. (And I'm crying again!!)
I don't have much more to say today, this is going to be a shorter post, just hugs to everyone out there for all your own struggles. It's nice to have this blog as a way to just be honest about everything I go through, for myself in many ways, because it gives me an outlet, and I like being honest about how difficult mental illness is, also as a supportive bit to others going though it. It needs to be talked about more often, more honestly because there's still just so much awful stigma around it because people just don't get it.
Anyway, so long for know. Hopefully I'll start posting more often again soon.
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