I’m Home, Getting Better, and Really Cranky

I was discharged from the neuro ward last Monday evening (appropriately, I guess, the date of my release coincided with Purple Day [for epilepsy awareness]). Except for an appointment a few days ago and a ten-minute walk yesterday afternoon, I’ve been more or less chilling ever since.

I hate chilling.

Although I’m super happy to be home, it hasn’t been 100% smooth sailing, in part due to the expectations that I have for myself and for my recovery. When I’m in the hospital, I’m perfectly fine with doing nothing but resting, taking my medication, having brief conversations with doctors and nurses, and eating, if and when I want to; indeed, I can go days without looking at my phone, let alone at my computer or at a book. Once I’ve been given the green light to leave, on the other hand, I feel like I should be able to seamlessly transition back to my pre-medical-emergency life, whether or not my body and my husband agree with me.

The result, 100% predictably, is frustration when I need a four-hour nap after pushing myself only a little, or when I spend several hours reading the same chapter in the memoir that I’ve been working on since before I was admitted to the hospital, or when I realize that this is the fifth time that I’ve sat down to write this blog post. It doesn’t help that I’m still adjusting to a new dose of what is currently my least favourite drug, nor does the fact that my VNS now actually hurts every time it stimulates—a delightful development that I hope that my epileptologist will address when I see him tomorrow. I’m bitter that instead of “two steps forward, one step back,” the last month or so has felt more like “one centimetre forward, oh wait, let’s speed three kilometres in reverse.” I’m angry that a doctor in an ER last summer decided to load me on Dilantin, thus initiating my phenytoin woes. I’m upset that my gait issues are suddenly worse than they already were. I’m frustrated with myself for being this frustrated.

IMG_7444 2
Very realistic depiction of my VNS jolting me. #art

 

Sometimes, when I stop to think for too long, life seems so gosh-darned unfair.

And that’s usually OK. By living with seizures, I’ve learned that my happiness doesn’t (always) hinge on the idea that the world is a fully just place. Give me a few days, and I’ll return to being more able—and willing, I guess—to focus on what I have, on the positive, on the silver linings. They certainly exist, even when I’m too busy wallowing to actively seek them out. If I try, for kicks, I can quickly come up with a whole list: for example, that I’ve seen a huge amount of improvement since last weekend; that my stay was pretty short (and that I was told that I wouldn’t be discharged until felt safe to go home—a reminder that I’m incredibly lucky not to have to make medical decisions based on money or fights with insurance companies); that an old friend is coming to visit from across the country tomorrow; and, of course, that I’m married to a loving, supportive, devoted man who takes care of me even when I’m as cranky as I have been lately.

So yeah, I objectively have a ton for which to be grateful, and I am, somewhere at the core of my tired, grumpy soul. Yet I’m still tired and grumpy, and the best I can do right now is attempt to find some balance between self-pity and positivity. Maybe, just maybe, that’s the healthiest option (or maybe I’m full of it). While there’s something powerful about acknowledging when things do suck, it’s even more powerful, in my experience, to be able to maintain a relatively good attitude about whatever it is that’s making you want to curl up in a ball, turn off the lights, and wake up in a month. In this current round of setbacks, I haven’t yet found that place of equilibrium. I’ll keep working on it—and on my stick-figure-drawing skills.

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