Little goals

I imagine it’s much the same for many diseases, including those considered “invisible”. While in the throws of a bad migraine, especially a multi day episode, I find myself making little goals throughout the day.

Get out of bed before noon. Eat something. Drink at least 2 cups of water. Take a shower. Try to smile at something, anything. Don’t wallow.

If I know I’m going to have to force myself into the real world, regardless if I’m feeling better or not, I’ll ramp it up: put on a bra and get out of my pajamas. Maybe comb my hair.

These are all much easier said then done sometimes. When you can’t sleep for the pain, and what sleep you do get is intermittent, a wake up call can never truly be predicted, especially when medicated. My medicine may make the pain less, or go away entirely (albeit temperately sometimes), but it makes me majorly foggy, groggy, and often times nauseous.

Recently my doctor increased my dosage with the hopes that it’ll decrease the frequency of my multi day episodes. I wouldn’t really say it’s been a success as now I get incredibly nauseated about 30 minutes to an hour after I take it. It helps with the migraine but it’s a trade off. And this is if I’m not already sick to my stomach from the migraine itself. All of this doesn’t really make one want to eat or drink. But seeing as how not eating or drinking enough are two of my major triggers, if I don’t force myself to, it just compounds the issue.

Imagine your head hurts so much you can’t even open your eyes or sit up. Now imagine taking a shower with the water rushing over that same head, and the noise of it, and then having to comb your hair after. Many times it just can’t be done. It’s too much. This last episode I’m almost ashamed to admit I haven’t showered for nearly 4 days because of this. I look like a vintage troll doll. And I stink. I know I have to stink. But at a certain point you just stop caring.

This lack of caring can also be tied into depression. When you’re stuck in the dark, by yourself, in pain for days on end you start to get a bit depressed. You start to let things slide that you shouldn’t, have thoughts you shouldn’t. When I find myself in this slide is when I try to force myself up, at least mentally. It doesn’t always work, mind you. I start to overthink things, psych myself out, have whole conversations in my head with invisible coworkers for when I go back to work feeling the need to defend my time off.

That’s a thing. I know I shouldn’t, but I feel the need to defend and justify myself after an episode. I think this is a major thing for those with invisible diseases. Others don’t see, don’t experience what we do. They judge on what they see, and usually they only see the best days. Believe you me, I’d much rather be at work, earning money and contributing, than at home trying to will myself to get up to the bathroom. Everytime I call in I feel guilty. I know they’re short staffed, perpetually short staffed, but I also know that I wouldn’t be much help to anyone in my condition when I’m in an episode.

Leading up to the Miles for Migraines race they were posting random articles and things. One of the subjects struck a cord. They talked about how migraineurs tend to only tentatively make plans, just in case they have to cancel. I’ve noticed I do this, especially with my girls. I always add a disclaimer: “depending on how I’m feeling…”. Even if I’m feeling fine at the moment I still do this. For example, today is July 3rd. Tonight are fireworks. Currently I’m on day three of a lovely episode. I know the girls are really looking forward to seeing the fireworks but if we do go it’ll be torture for me. As it is, just hearing them muffled from inside the house is probably not going to be pleasant in the least. I’ve medicated with the hopes that when the fog lifts in 6 hours I’ll be functional enough I can fulfill my promise, but I’m doubtful.

Some days it’s a Catch-22. Take my prescription and deal with the side effects. Take Excedrin with the hopes that it’ll dent the pain, but risk a stomach ulcer (not supposed to take nsaids after weight loss surgery). Or don’t take anything and just be in pain. If I do take anything, and take it too regularly, then I can potentially cause rebound headaches. (https://www.mayoclinic.org/diseases-conditions/medication-overuse-headache/symptoms-causes/syc-20377083)

To avoid, or at least lesson, rebound headaches it’s recommended to not take prescription migraine meds more than twice a week, and over the counter meds more than 15 days a month. Often times because of this, meds are rationed. The internal monologue starts, questioning whether this or that particular headache is bad enough to warrant medication when you might have a worse one later in the week.

At my next appointment I think I might bring up a new thing I’ve heard of. It’s a twice monthly self administered injection. It can potentially decrease daily migraines down to just 4-5 a month. I’ve also heard it can be pricey though.

So basically my brain sucks, some days more than others, but I’m trying to learn to deal with it, and with my doctor learn to live with it more effectively.