Spasmodically Speaking

[spasmodicallyspeaking]

Medication

Sometimes I am all too aware of how much my life revolves around medication. Tonight, after not having a particular medication for the last three nights (it was the holidays and my psychiatrist was out of the office and therefore couldn’t renew my controlled substance) I finally have the medication I couldnt get.

I am so relieved, because I know that I’ll be getting the first good nights sleep without fucking strange ass dreams for three nights.

At this point, i pretty much know the withdrawal effects of most of my meds. Particularly with controlled substances, it’s virtually impossible to consistently medicate myself, considering the potential for error that occurs between me, my psychiatrist, my insurance and my pharmacy. For some of the meds it’s no big deal, for most it’s minor annoyances, for others it’s pretty freaking awful. If I kiss more than three days of Zoloft...forget it- I start getting brain zaps (they feel like electric shocks in my brain) and dizzy spells and disassociative episodes- no bueno. Luckily, I’ve got a decent backlog of extra Zoloft in case of emergency, and now know how to taper off myself if I really can’t figure out a way to refill in time.

Here’s the thing. I’m thankful for the restrictions on controlled substances- I’ve had addiction problems and the restrictions keep me in check and have made it a lot harder for me to relapse. I do my best not to get annoyed with the pharmacy folks who I know are doing their jobs attempting to curb a very serious problem in our country right now- I don’t envy them that position (nor do I really think it should be their responsibility to enforce those regulations, but that’s a much larger discussion).

But the truth is- I’ve had weeks of unnecessary side effects because of bureaucratic mistakes in the system beyond my control. Mistakes that have no direct impact on my insurance or psychiatrist or pharmacy aside from my many phone calls- but that have very real and debilitating effects on my life and well being. And that’s messed up. Sure I could and should be more on top of pre-planning and being aware of what needs refills when- but the reality of my situation is that there are a million and one of those tiny details that need attending to every day and ultimately, some of them fall through the cracks. And I end up with nights of 2 hours of restless sleep with existential dreams where I am sure I have ceased the exist and only now can be present in the world in the form of a sock. And if that’s not unsettling to wake up to after two hours...well, I don’t know what is...

[spasmodicallyspeaking]

I’m learning...

I am very lucky because I can still do many of the things I used to do. I just spent a weekend at a summer camp where I grew up which was hugely developmental in the ways I think/act/am today. It’s in the middle of the woods, not disability friendly and I was sleeping on a bed essentially made of plywood. I had to change some things about how I interacted with the place and had a headache most of the time I was there, but for the most part, I was able to be there and be present as usual.  

The problem tends to come in the aftermath. I was supposed to have work and rehearsal the last two days and haven’t made it to either. I knew I would need recovery time, but I kind of also knew I couldn’t ask for it- at least at work. So I had to call out of both. For rehearsal it was bad planning on my part because it was the one day my co-collaborator also couldn’t make it and we had to get our ASM to run rehearsal. Some stuff went down and now we’re dealing with a bigger mess as a result. That was my fault. I should have suggested we cancel the rehearsal as a precaution, knowing I might be too out of it.  But I wanted to be there on the one day my collaborator couldn’t be since she’s been covering so much for me. Ugh. Now she’s dealing with the aftermath alone as well. It’s not fair for anyone, but a good reminder that being realistic about my abilities is more important than being optimistic. At least when it comes to that.

I also sometimes wonder what it would be like if I was 100% honest with people all the time about how I actually feel. It seems like half the time I’m pretending to be better than I actually am and the other half the time I’m being slightly more explicit about my condition than is necessary so that I don’t feel like people are judging me for calling out of things. That said, I’m watching a documentary series on Netflix right now where a woman responds with an honest list of everything that’s wrong with her every time everyone asks her how she is and it makes me want to punch her. You can just see the tone of everything in the room drop like a rock every time she does it, and a lot of the people think she’s faking her symptoms (one of which is dystonia, ironically).  But maybe I just want to punch her because I’m jealous of her, jealous she’s getting the attention and care she needs and jealous she still seems to have people around her who tolerate it.  I don’t know.

I had good conversations with people at camp, and had the good ego boost the place usually gives me. I have no doubt it’s worth the days of crummy recovery, I just need to figure out how to plan for them better, and not get other people caught in the cross-fire. 

[spasmodicallyspeaking]

Ma-ladies

I have a small, but growing, rash on the inside of my wrist. And one of my bottom teeth chipped and may or may not be slowly chipping more. I don’t think either of these things are related to dystonia (unless the chipped tooth is from clenching my jaw), but my life feels so full of medical stuff and doctors visits that I am more hesitant than usual to point them out to anyone- doctor or otherwise.  

It’s like I’ve used up all my maladies on the day to day dystonia things and therefore can’t bear to bother the world with these other strange (and ultimately not currently urgent) phenomenons that may or may not take care of themselves in a week or a month if I just properly ignore them.  

It doesn’t help that I’ve gone to the dentist with tooth pain twice over the past year only to be told it was nothing and probably just a result of my teeth being overly sensitive and frequently under pressure compliments of my overactive jaw.

Is ignoring these things a terrible mistake? Is my body falling apart because some overactive neurotransmitters are making me constantly tired and less capable of healing properly? Or is this me just getting old? 

All I know for sure is that I can’t afford to take any more time off of work for doctor or dentist appointments and still need to schedule a slightly more urgent breast ultrasound before tackling anything else (thanks history of familial breast cancer). So, in the meantime, I’ll continue to wonder at my wrist and poke my tongue at my tooth, attempting to gauge the relative importance (or lack thereof) of addressing minor concerns when my life so often feels like one constant minor health concern.

That Maggie: She was great, but a minor health concern.

[spasmodicallyspeaking]

today was a rough day

Today was a rough day. I got to work late and had to leave rehearsal early. I didn’t have a headache, I don’t think it was med side effects, but I felt some kind of wacked out exhausted. Foggy and blurry and dazed. 

Sometimes I wish I would cry about it because I feel like that’s an emotion people understand. As if that would make the excuse for me without having to explain how I went away this weekend which was really nice but I knew it wouldn’t be good because I didn’t take a day off to recover because I couldn’t take a day off to recover because I don’t have any more days off from work to spare. And now i go straight from work to rehearsal and even though I wake up on time I can’t actually physically get myself to work on time because my body just won’t go. 

It would just be a lot easier to cry and say I can’t anymore and leave.  But an adolescence of vehemently and persistently holding back tears has made it so that now they seem to evade me during the times when they seem the most appropriate. 

But I took a shower and brushed my teeth. Both of which I should have also done this morning but didn’t.  

I’m worried my roommate thinks I’m angry at her because I haven’t seen her because I disappear into my room as soon as I get home for air conditioning and sleep.

I’m worried my cast thinks I left because I feel sad or exposed about telling them about the Pain in the Neck party I’m planning when I go on disability. But I came into rehearsal feeling shitty. And I was excited about doing character work, but I couldn’t fully be there, and that wasn’t fair. I also couldn’t go another day without showering. At least without it starting to impact the people around me.

So today was a rough day. Tomorrow will probably also be hard, but after that I get a day off and get to go to Circle Pines. Which I hope, I hope my body won’t ruin for me.