The Little Things That Kill

In learning to live with chronic pain and neurological symptoms, I've adapted. I am easily avoiding triggers that, three years ago, I could never have anticipated. It's a little like when I first went vegetarian, how I'd forget that a pork chimichanga was made from a pig, or would dive into a meaty spaghetti sauce without even considering what the chunks were. Changes take adjustment, and adjustments take time. Over the past three years (Happy Painiversary!) I've gotten the hang of my new slower, cautious, quieter life. That said, there are a few triggers I haven't yet conquered:

1. My hair. I should just cut it all off. I swear I will every other week. It's heavy, my hair, even when it's short(er). So, I can't wear it in a ponytail, a bun, or a single braid anymore. Some days I can tolerate the light tug of a small clip holding just the top half of my hair back from my face, or two loose ponytails or braids, but most days my scalp is just too sensitive. I've gotten used to always having my hair down, but there are times I can't avoid tying it up. For example, if I want to take a shower without washing my hair, it becomes an exercise in patience as I try six different ways of twisting/clipping/braiding/loose ponying to distribute the pull as much as possible and avoid the several hot spots that scream at the slightest tug. (And then my arms get tired and I have to lay down for a while and rest from all the hair styling.) I'm searching in vain for a shower cap that will hold my hair securely without squeezing my head too tight, because that seems like the best option I've got, but that's not without its own issues, which brings me to number--

2. Sunglasses and hats. I KNOW, what? The pressure points they create, however light, make my head ACHE, just like an updo. But in the sun, or under unkind lights, it's not as simple as wearing my hair down. It's migraine now or migraine later? Or stay inside under the blankets. I am on a seemingly everlasting hunt for sunglasses that give me adequate light protection without pinching anywhere and a hat that is simultaneously attractive, light blocking and massive-dome-accommodating. It doesn't sound hard, does it? IT IS.

3. Cold, dry air. It irritates my sinuses and immediately the stabbing starts behind my eyes and in my temples. So, when it's very cold, or I am trapped in an air conditioned space, I tend to cover the lower half of my face with my sweatshirt/scarf/blanket/my hand to warm up the air before it hits my sinuses. I look funny, but it helps.

4. Chewing. It's not a constant problem, but if I'm already not feeling well, my jaw often tightens up and it's very uncomfortable to open my mouth more than required to mutter unintelligibly. I suspect I have some jaw dysfunction and I plan on getting myself checked out by a dentist who's into that sort of thing.

5. Rolling my eyes. It's an automatic response to irritating stimulus that I'm trying hard to break. But it's really become a reflex after so many years as a snarky know-it-all, so I'm often catching myself mid-roll, which still triggers dizziness, head pain and nausea.

6. Looking up. Of course, looking up with my eyes is a trigger in the same way rolling my eyes is. But besides that, looking up with my head and neck is trouble, as well. It leads to nausea, vertigo and head pain.

7. Laying down. When I recline, my head pain will often pool itself at the lowest point, and/or wherever there is any pressure on my head. I address the problem with ice packs in a near-constant rotation, and it helps somewhat, but frostbite happens, people. There's your PSA for the day.

8. Bending over. Sounds dirty, right? Well, it is. My house, I mean. Filthy. Because I can't clean it. I am allotted only a handful of elevation changes a day, if that. The more I bend, the worse it gets. This is making doing the laundry and dishes difficult, too, and those are my "easy" chores.

9. Food. There are only a handful of foods that I have confirmed as triggers, and I can get away with most of them in moderation. But the last few times I've eaten raw onions, even in small amounts, my head started to throb and my thinking was fuzzy and my head felt like onions. It's like that feeling in your nose when you get a big whiff, spicy and inflamed. A too-tart orange has triggered a similar reaction: I got dizzy and woozy and my whole head felt filled with citrus, like my brain was puckering. Now, it's not like raw onions and citrus are that difficult to avoid, but since they don't cause a migraine every time, and I love them both so very much, it's been harder to totally let them go. By which I mean, I'm not letting them go and I basically wait for the assault after every tentative bite. I'm such a risk-taker.

10. Talking. And with that goes Listening. I'm pretty much a recluse right now. I talk to my boyfriend and my dog every day, but otherwise I can go days, and have gone weeks, without speaking to another soul. I avoid the phone as much as I can, and email and instant messaging are my primary forms of communication. It works for me, for the most part, but when I do get out and attempt to interact personally with the hordes of loved ones who are used to seeing me every other whenever, I'm worn out ten minutes into conversation. It's disappointing. My own voice is loud in my head, with or without earplugs and other people don't generally modulate their voices well. They get loud or change their pitch when they make a point, or laugh suddenly and sharply, or speak quietly and face away from me, making me ask What? one hundred thousand times. I fantasize about having a universal remote with which I could turn down the shouters, turn up the mumblers, mute the squawkers and change the channel completely when my world gets too taxing.



Look at that, an even ten. You now, nothing in my life is an even ten anymore. It's all twelves and nines, and unfinished sentences. But writing it all down, making an even ten out the ridiculous drama that can be my daily life in pajamas, makes it make a little more sense and feel a little less unhinged. It's hard, but it's not just me.