I’d be crazy to think that “normal” in terms of life as a disabled migraine patient should look anything like your “normal”…
When I say this, I want you to think about your week.
For the most part, you work your scheduled days, enjoy your weekends, and absolutely dread waking up on a Monday morning.
That’s your routine.
Even as a student, Monday’s are dreadful and suddenly you’re halfway through the semester wondering how on Earth you’ve gone this many weeks and how this new semester’s routine became so normal so fast.
Each day brings a new attitude, because each day is closer to the weekend or a fun event.
I have to admit, with football season pretty much being over, I don’t know what day it is 99% of the time.
That’s crazy right? I think it is.
My “days” exist in a bubble of I took medicine two days ago, so even though I need some today, I have to wait until tomorrow. I leave my medication on my counter for a few days, and this internal clock tells me when I can put it back underneath in it’s box. I somehow know that once that medicine has been put away, it’s safe to take it again, but if it’s still on the counter it’s too soon.
The past few days, I’ll admit I’ve been really angry. And I don’t know if I’m solely angry or if I’m sad or disappointed as well.
The end of every month serves as a point of reflection for me. My various diaries and tracking mechanism all need to be analyzed and new charts need to be drawn out.
If I pause for a moment, the end of December I was met with the acknowledgment that yes, I am disabled, yes this is my life, and yes it is okay that my version of normal isn’t everyone else’s. But, I had a version of normal.
See, for my January “goals” I had specifically expanded on the area of exercise. Throughout December, I’d recognized that I was able to move to a certain extent. 5 or 10 minutes here or there. I decided that I should give myself the opportunity to make a little checkmark not once, but twice a day to note if I’d managed to squeeze in a small workout of a few stretches. The goal wasn’t to “work out more” it was simply to capitalize on the idea that I can “move” a little more without it harming my health.
The first half of January honestly was really good.
It was clear to so many people that I was in a really good frame of mind and things were coming in to place.
My day’s consisted of slowly getting up, enjoying that cup or two of coffee and evaluating if I was up to do anything that day.
I got back into a comfortable groove of writing and sending pieces off to be published. I even got back to reading a little bit here and there of books I picked up months ago. I’ve been doing all sorts of research and working to understand why various treatments may not have worked.
I momentarily thought I was in a place where I could adjust my workouts and work on building muscle… I was fortunate enough to throw out my shoulder again postponing that, but hey that’s at least an injury I understand.
I was eating a good portion of my meals downstairs, not having to have everything brought up to my dark living room.
I was keeping up with tv shows and rewatching others.
So, my normal mostly existed within comfy sweaters and extra blankets. But if someone asked me what I was hoping to do in a certain week, there was bound to be a task or something small I wanted to achieve.
But here’s where my problem comes to light. This month and next are typically my easiest months when it comes to my migraines. Winter is a pretty consistent season and there aren’t a lot of external factors exacerbating the pain. It serves as my “baseline” period, and also as a key recovery period.
I lost the second half of last year to my trial with Aimovig. From September until the first week of December, my pain and my migraines were out of my control. They got worse, they changed, and I was dealing with so many other side effects that any sense of life didn’t exist. I longed for version of me that had just moved home and was desperately trying to dodge hurricane related barometric pressure changes.
December wasn’t a walk in the park, by any means. But returning to a baseline is a huge step for me.
It’s the end of January. I’ve had Botox sitting in my face and neck for two whole weeks.
It’s hit me that this treatment didn’t work. Days 10 – 14 are the days where you can start to notice a difference.
Here’s the difference: I can no longer drive, because the neck tension hasn’t gone away. My medication doesn’t work as long, because the pain from my neck keeps the migraine pain triggered. I can’t stay awake as long because of how drowsy I am. The pain is keeping me awake at night and making the sleep I get less effective. I’ve spent more days than not simply sitting in the dark, staring up at my big tv that doesn’t get turned on, because even that is too bright. I’ve gone from showering every day, to every other day because I can’t muster up the energy to push through the pain of having to brush out my hair.
So, my “normal” isn’t here right now. I’ve lost that. Normal isn’t day after day sitting so inactive you can feel various muscles and organs slowing down and physically not being able to do even the simplest of stretches to ease the pain.
So, I will lose three months to Botox, just as I lost three months to Aimovig. And come April, when this Botox has worn off, maybe just maybe pollen season will have passed us, but I’ll most likely be swept up with horrendous hay fever as I always am.
And when the hay fever subsides, the heat of the summer months will wrap me up trapping me inside. And then I’ll get my wish and hurricane season will be back.
And so I’ll try not to think of it all.
I’ll continue to push through. Read about new options. Wait for the new abortives to be released to the public. Maybe I’ll feel bold enough to try a different CGRP. Maybe a few weeks from now the Botox will prove to be working after all.
I’ll make my new charts, even if I don’t really know what to track.
“I know of no higher fortitude than stubbornness in the face of overwhelming odds.” ~ Louis Nizer