I don’t know about you, but I like to start every vacation with a clear idea of what I’m going to get from my time off. Half the fun for me is in the planning. The other half is in making the plan happen.
Except this time, no such luck.
This time I spent the first four days of vacation in a migraine state.
This meant no travel, no time outdoors, little to no screen time, and no liquor (goodbye, hot cocoa with peppermint vodka). No candles (the flickering). No fire (also flickering). No skipped meals. No bright light. Lots of time in bed or lying down.
Plenty of vegetables, water, and sleep. My regular exercise, but in a darkened room and as gentle as possible. And all my meds.
So those first four days, it’s easy to view them as a total loss. In a way, they were. I think I watched a movie with my husband, though I don’t remember. I know I read more of Girl, Woman, Other because I’m further along. I know I journaled a little. I can show you the pages.
But mostly, I don’t remember what happened. I can look in my migraine app and see that I spent those days nauseous and light-sensitive, dizzy and weak, mentally confused and foggy, my ears ringing with tinnitus and my vision dotted with black spots—so much so that at one point, I thought mold was growing on our ceiling. Out of the corner of my eye, I kept seeing spiders crawl along the walls.
But they weren’t.
That was just my spotty migraine vision.
The opposite of Superman’s X-ray vision.
He can see everything that’s there. I can see all kinds of things that aren’t there—rainbows and glitter showers and black freckles.
When I stop to think about it, even with all the drawbacks, I’m not completely sure he has the better deal.
* * *
After four days in bed (or on the couch), I got lucky.
On Wednesday—glorious Wednesday—Josh and I made it out to celebrate our fourth anniversary. We saw a movie. We got massages. We had dinner out.
Then, symptoms reared their awful heads again in true Hydra fashion, and I had to retreat back into the cave again.
But this time, I was smarter about it. We have learned to always have a Plan A and a Plan B, sometimes even a Plan C. If an outing or celebration matters to either of us, we draw up three ways we can stick to it even if I’m not doing well. Plan A is I’m asymptomatic. Plan B is I can still do it, but we’ll have to make some accommodations (maybe shorten the event, maybe I bring a barf bag, maybe we do something special at home, maybe I skip the first half but make the second half). Plan C is “Everything’s gone to hell, maybe I can’t even see, so let’s still have something remotely resembling fun.” Yesterday this meant an adventure-in-a-box game at home.
I have to pause for a minute here and appreciate that my husband is a homebody. By his own account, he always has been. We married expecting that I’d be the adventurous one forever dragging him off to hikes and bicycle trails, kayaking and camping, traveling and exploring new places. It hasn’t quite turned out that way, and he has expressed relief at that more than once. Which makes me chuckle.
I am just so goddamn lucky.
If you marry someone with a disability, it’s not a big deal. Your relationship is already built to accommodate that. But if you marry someone and then they become disabled, it’s a different ballgame. Not every relationship can survive that.
* * *
So we’re down to two days left. And you know what? I don’t know what will happen. But based on the high humidity and the pattern of the last few months, another doozy of a migraine is likely. But this time, we’ve got our Plans A, B, and C. Plan A is a day spent in the galleries and bookstore and cafes of Bainbridge Island. Plan A is setting up the Christmas tree on Sunday, drinking hot cocoa, and watching a movie.
But it may not happen. Plan B is a short, local outing in our city. Plan C is Josh picks up a treat for us and brings it home, and hopefully I’m not too nauseous to indulge a little.
How do I feel about that?
I feel sad. I won’t lie.
But I don’t feel angry. At the beginning of this vacation, I felt angry. I was angry at my health. Angry at my job uncertainty. Just generally ticked off at my brain for giving me what felt like the finger.
You want a week off to relax and have fun? Well, screw you!
Or so I imagined my nervous system saying to me.
But that’s nonsense. It’s flat-out false. This is just the nervous system I have. It gets overstimulated easily—sunshine out my window, too long on the computer (and “too long” varies by the day), headlights or ambulance lights out on the road, a strobe effect on a TV show, scrolling down a web page. And bam. I’m toast.
It’s just the way it is.
It’s not my fault. It’s not my brain’s fault. It is quite possibly the fault of the traumas I have survived. Those do, unfortunately, change the body forever. Especially when we encounter them as children.
But getting angry is just pointless.
And it’s okay to be sad.
So I’m working on letting go of the anger, which is just a defense. Just a way for me to avoid the sadness.
And I’m also working on incorporating small pleasurable activities that I can usually manage, even on my worst days. I’m realizing that reading a novel with a mug of chocolate milk is absolute comfort to me. It means home and warmth, and so I try to make sure that always happens. Even if I’m having a hard time seeing (or listening to anything) and can only read one page or one paragraph, and even if I can’t remember it the next day. It’s still better than just wallowing in what I can’t do.
I don’t know if this is a win. I’m still learning the ropes here. I’m still learning how to feel okay about not feeling okay. I’m still learning how to let go of the anger, so I have space for the grief. And I’m still learning how to be grateful and enjoy things, when the things I can enjoy are sometimes very limited.
But that’s okay, too.
It’s a process. A journey.
Three years ago, I didn’t think I’d ever stop resenting that I don’t get a vacation from chronic illness. I thought I’d never get over the fact that even on vacation, I still have to stick to my schedule for meals, sleep, exercise, and medications. There is no break.
But I did. I got over it. You don’t get angry about having to use a toilet on vacation, do you? It’s like that now. It’s just something I have to do. Part of being alive in this body I inhabit.
So there’s hope. Maybe one day I’ll get over this frustration, too. Maybe the inevitable disappointments that come with chronic illness will slide off my shoulders, like rain off roof shingles.
And hell, if there’s hope for me, then there sure is hope for you, too, my friend.