in which we have pills & pigeons

In February I started feeling off in a way I couldn’t quite put my finger on; things weren’t quite right, I knew that, so I did an MS thing and started carrying a little notebook with me, taking notes. (This is a great trick if you’re working on getting anything tricky diagnosed, FYI: find a note-taking system you know you will use and write down every silly thing that seems unusual, with date & time stamps. You might feel foolish doing it- I always do- but if you’re chasing down an autoimmune disease like multiple sclerosis, lupus, or fibromyalgia, these logs are a godsend to you & your doctor.) What it showed was that my activity levels were even lower than I thought they were, that I’d stopped socializing, that I was hardly getting anything I wanted to do completed (and, weirdly, that what I was doing was a whole lot of nothing, just this meaningless stuff that I didn’t even enjoy) and that I was hardly eating unless someone else was around to prod me. It was the eating that really tipped me off: my feelings about food are very, very big, and I still have the appetite of roughly a fifteen-year-old. I throw down at the table, politely.

I was having a hard time getting out of bed in the mornings, which was so strange- I tend to pop awake around 6 am or so- and when I had a day where I couldn’t drag myself out from beneath the covers until noon, I knew things had gone way too far. This wasn’t just working from bed because it was too cold to stomach the wood floors. Sam has dealt with primary depression for most of the time I’ve known him, and he manages it very well, but we talk about it a lot, so I’m familiar with the symptoms.

Initially, I tried to address things through lifestyle changes; sleep hygiene, working my diet, walks & exercise, sunlight, monitoring caffeine, the regular set of Very Good Things, and that did make a dent; being dysregulated only serves to get things further out of whack, which feeds into any illness, etc, etc. It wasn’t a fix, though, and for years I’ve been told that I’m at risk for depression due to MS (it’s a major symptom), as well as just being a pre-menopausal woman, and having a long family history of “just check yes here” for mental illness on either side. I gave lifestyle a good two weeks, then made an appointment with my GP, who ran a few blood tests and put me on the world’s tiniest dose of an antidepressant.

It’s been funny: outside of post-partum, depression hasn’t been a major part of my mental illness, so this has been sort of interesting to experience once I got a handle on what was happening. (Intellectualization will always be how I deal with any unpleasant experience. If you have to be in it, why not take the time to witness & learn from the thing?) Panic attacks, insomnia, PTSD, anxiety, those have always been my bag- I’ve mostly hovered in the other side of the pool. I found that torpor, the lack of an urge to do anything pleasant or even self-assistive, shocking: the lived experience of an organism that was not motivated to provide for itself made no sense to me, biologically. Survival has always been something I think about a great deal- indeed, at times I think about it far too much.

Within roughly a week and a half, the pills began to chip away at the chemical part of the depression, which allowed me to do more lifestyle work. After a month, I felt like myself again, which was very strange- welcome, so welcome, but it reminds me again how much we are just meat and chemistry, something that this Spring seems to want me to know quite badly.* (I appreciate the reminder; it’s cheering, somewhat Easter-appropriate, and grounding.)

If I’m being frank, I’m feeling a little stroppy about adding another medication to the pill-box, but I’d be feeling that way no matter what I was adding- it could be a supplement, something from my cardiologist, or a daily Hershey’s Kiss, really. The pill itself is half the size of my pinky fingernail, so space itself isn’t the issue, and I’m certainly not arsed over taking an antidepressant- chemistry is just chemistry. I’m grateful, though, for this peek into something other, despite it having been largely unpleasant; witnessing how stealthily this crept into me, and the horrible, hateful leadenness of it, was really helpful in understanding Sam, and a whole boatload of my friends, too. Not that I’d want the depressive contingent of my friends to start having panic attacks or PTSD-type dissociative episodes so they can relate to my shit or anything, but hey, nice side bennie here.

So, that symptom finally got me. I was hoping to avoid that one, but you don’t get to pick, and superstitiously (we are all Skinner’s Pigeons, every blessed one of us) I try not to get over-invested in which of the major symptoms I do or do not “hope” to get, in the hopes of not jinxing myself. Brains: we can get ourselves to the moon, but we could also spin in circles until we starve. Miraculous!

Speaking of superstition, hope, health, and things I don’t talk about for fear of jinxing them: Ocrevus was approved by the FDA in late March of this year. You may remember me writing about this drug earlier.  It’s pretty huge news— not just due to reports that patients saw some pretty amazing NEDA rates (No Evidence of Disease Activity), or because many patients also saw an actual regression of symptoms— although definitely those things, as regression is completely unheard of (and something most of us don’t even hope for after the first few years). This is also the first drug on-market that addresses Primary-Progressive MS patients, the population most in need of treatment options. Before this, if/ when a patient’s disease reached the point that it never went into relapse, there was just nothing to do to stop disease progression; this gives real hope to patients who previously faced a frightening, unpredictable decline in health.

I’m stoked. Obviously, I’m hoping to give this a whirl for multiple reasons. Gilenya is a black-box medication and I’d like to get away from that. Ocrevus comes with a metric ton of scary warnings, too (really, all MS meds do) but for RRMS you only take the infusions a few times, which is less concerning. PPMS patients, however, will receive regular infusions, similar to Tysabri, Lemtrada, methylprednisone, etc.

Gilenya has a cardiac warning, and I’m a cardio patient now, after (finally) bothering to work up a heart condition that has bothered me since my teens, a tricky little arrhythmia that took two Holters to nail down. (I’m not ungrateful: I owe a military career and aviator leather to how hard that was to define.) While my cardiologist and I don’t forsee any issue with the Gilenya- it’s been five very smooth and uneventful years together- there have been enough problems since the medication launched that I’m hoping my insurance will okay the switch, and besides, afterward they wouldn’t have to pay for Gilenya OR Ocrevus, so that’s a win-win, right?

I’m trying not to hope too hard on that, but it would be nice to take one pill out of the organizer after adding in a new one this year. I don’t know why I’m pretending logic + insurance company policy = real life, though. More of that hope business. It’s framed as such a lovely thing in our culture, and it can be, but as with any form of craving, it’s best in small doses.

 

*Early this month one of my oldest friends had a hysterectomy. I came over the next day to see her, to bring gifts and watch the surgery video with her and her partner. We took turns looking, looking away, admiring colors, feeling horror, feeling awe, consoling, sipping tea and passing a bowl. It was so fundamentally communal, watching and witnessing, giving space to this very-important/ quite-insignificant thing that had happened to the body of this person we love. We are astounding, complex meat machines.

  One thought on “in which we have pills & pigeons

  1. April 18, 2017 at 10:56 pm

    I have been doing neurobiofeedback since Sept or Oct and it has improved my mood a lot. I didn’t call what I had depression because I was way more functional than when I was seriously depressed, but yeah, I think it was depression. The neurofeedback got my working properly by December. They changed my protocol in January and now I have an “I can do it!” thing going on. Very helpful. There are different schools of neurofeedback, though. I would have to talk to my therapist to see how a person tracks down his exact thing.

    • April 21, 2017 at 10:54 am

      I worked with a fantastic therapist in Baltimore and we talked about neurofeedback a few times, although if I remember correctly I think we discussed it in a clinical sense, not “this is a thing to try”, which I now regret. She was very enthusiastic about the concept, though- had a lot of good things to say about it, and I’ve always meant to look into it. I’d be interested to hear more about which “version” (is that the right term?) you underwent!

  2. June 27, 2017 at 1:15 pm

    I found my way to your blog because I have for years loved your beautiful yarn, then recently read that the health condition which forced you to close the yarn operation years ago was MS.
    My son was diagnosed with MS two years ago and, after working his way through three medications, has just been put on Ocrevus. So much of what you write about trying to deal with the effects of MS sounds like what he is going through. Thank you for writing about your experiences; our family has felt somewhat isolated during these past two years as we try to help our son, and reading your candid take on the challenges of coping with this disease helps me feel less so.
    – Loring (knittinghiker on ravelry)

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