Ever go through those phases when you are exhausted during the day, then wide awake at night? That’s where I am right now. My worst event, the MRI, looms. We meet again next Monday afternoon.
Picture an electrical cord. Now picture, I don’t know, your obese cat biting a hole in the outer jacket so you can see the actual wire. The cord still works, right. It just looks like hell and is possibly dangerous. Sparks and all that. Maybe a short-circuit, maybe a burnt patch on the rug. Maybe not that big of a hole and you think, “Ah, I’ll just run the vacuum anyway. Maybe put some electrical tape over that next week.”
That’s demyelination in a nutshell, myelin being the outer jacket protecting your nerve pathways. So far my cat has only gnawed two holes in two different cords, and I am somewhat appreciative. It’s not a horde of mice, at least.
Demyelinating events can be exhausting. You can get ice-pick headaches and feel like scratching your skin off. You can have your hand or toes or leg go numb for a few months. Or not. Or you could have a mild vision loss event and then get the stomach flu followed by a head cold with sides of depression and anxiety and return unwillingly to the zombie-like state you were in when your kids were under two, unsleeping and round-the-clock nursing. God I don’t miss those days.
I found myself staring in the refrigerator with my head resting against the open door this morning. I think I’d been there for five minutes before I realized it and another one to remember what I was doing there. I think I was making the kids’ lunches. Jar of peanut butter and a beer it is, kiddo!
This last week has been, ahem, rather trying, but also overflowing with care and warmth. My best and brightest lights have sent flowers, airmailed brownies, showed up with soup, juice, salad, fruit, dinner, scarves, my own copy of Magic Mike, and an entire case of diversions for the kids. Friends who are going through their own swamps of sickness, mothering, heartbreak, job and career demands, fractured marriages, and drudgery rushed to my side. And each time, it was a life-line.
It is actually, a bit of a blessing. Get an MS diagnosis, get the flu, get sick…and then get better. They are tied together now.
In an effort to return to normalcy and to be too busy to think I went back to boot camp and started a few projects: I started ripping the linoleum off the basement stairs, emptied out the vanity to wash the blue toothpaste crust off everything, scraped the water-damaged drywall off the basement ceiling, took apart the house water filtration system. I overreached. And I stepped outside three-quarters of the way through boot camp to cry. And then I got too tired to finish any of those projects and left everything everywhere. I managed to go grocery shopping for all that healthy stuff we should be eating and got too tired to put it away, much less prepare any of it.
I’ve told everyone that I am mostly fine. And that is mostly true. Except sometimes it is all bluff. I have almost yelled to both my kids’ teachers and one stranger my diagnosis, but switched at the last second from loud, weird, personal revelations to just loud, weird revelations like “WE APPRECIATE YOUR TIME SO MUCH!” and “PUMPKINS ARE ON THE WAY OUT!” So at least some things are still normal and can be depended upon. The cats know. They both have been following me around the house this past week. That, or it is getting cold out and they want more nuggets in their bowl.
The kids and I have a smattering of bug bites right now from who knows what. Mosquitoes? In the house in November? Spiders? Some horrible bed bug or something? This is the straw the broke me in the middle of another sleepless night. What good is fall, and hell, winter, in Wisconsin if I’m still getting mosquito bites I ask you.
So here are the three things that are keeping me afloat today: I volunteered in my daughter’s classroom and got mobbed by little hugs as I left, this heartfelt video from my brother (although I notice he did not tell the delightful story of me punching him in the gut in front of his friends and date at Homecoming),:
And this terribly bittersweet story from The Oatmeal (click through):
To those of you who have already stood up and done something, endless thanks. I’ll join you soon.