I lay here in a mostly darkened room, softly humming Let Me Down Easy by Billy Currington, hoping the meds I’ve just taken will kick in as the evening progresses.
Today I face the reality that after another long stretch of doing really badly for reasons beyond my control, having isolated the final variable to allow my health to level out, I have once again returned to my baseline of migraine pain and frequency.
This time however, I’m better able to acknowledge the emotions I feel because I’ve been here before. The truth is that migraine doesn’t go away. Migraine for me isn’t getting better. This is a fact I’ve long acknowledged as I work to carve out a life for myself that works within the parameters migraine has set.
Migraine goes in cycles. Short cycles of individual attacks. Longer cycles from attack to attack that give us a general idea of how we’re doing as time progresses. And even longer cycles as the disease shifts as time goes on. In the short term, I am really disabled by this disease even if my good days are brighter than before. We only get about 10 days a month to actually treat the pain, which for me I’ve rounded out to be allotted treatment every 3 days. My reality is that I pretty much need to treat every three days.
Some weeks are better. Sometimes I go longer, 4 or 6 days before I find the pain crawling back in demanding I try and cut this attack off.
But this is my baseline. Using my medication the maximum allotted frequency each month, 9 or 10 times, having a day every week to two weeks where the severity is beyond my control and all I can do is wait it out. Having days more often where it’s only the second day but the pain is back and I either treat it hoping I won’t fall into a habit of overtreating my pain, or I wait until it’s the third day and watch as my medicine doesn’t work as well because I was simply too late in medicating that attack.
The pain isn’t bad every day, but migraine has never just been pain. Sometimes even if I’m feeling okay, the sensory aspect of migraine and the overstimulation means I opt to cook my dinner in complete silence even though it would bring me a lot more joy to have my records playing as I cook. Or as the night rolls on I’ll simply sit on social media or texting a friend because the added stimulation of watching and listening to a tv show and following the plot is more than a tired brain can muster up the energy for.
Sometimes everything is just blurry, so even if I’m feeling fine I couldn’t safely go someplace and participate in the world. Because I shouldn’t drive when it’s like that. Because I can’t see the signs up high in the grocery store to navigate the aisles. I can’t sit and really watch a sports game. The world goes by in a blur.
But a month ago I thought I might be once again turning a corner.
I have this goal for myself, rather a goal for my doctor’s, that if I can reach a point where 30% or less of my month is spent in severe pain, I will be making good strides towards better health. This number considers a few things. At my current baseline which hangs out at the 40-45 percentiles, I have the ability to meet most of my basic needs so long as I manage my time very carefully. I can keep myself fed, I can cook for myself, I can keep my space clean, I can get things (groceries, meds, general needs) ordered on time, and I can attend needed healthcare while managing the grotesque amount of follow up that requires. I can also find time to do small freelance projects balanced with writing here and there to bring in a small amount of income. Time dedicated to income can also be swapped towards time dedicated to me, time I spend exercising, caring for plants, doing personal projects and so on.
This time however, doesn’t include what it takes each day to simply maintain my health. Years ago I calculated what that “time” was really like and deemed it “productive hours” for tracking purposes. It averaged out to about two and a half hours a day, the bulk of which were dedicated to cooking, prepping food, and ordering food.
So, when we create the 30% goal that gives me about 6 more hours each week on average where I have this freedom of time. Reasonably, we would hope the other time I’m also feeling better during lower levels of pain but that isn’t a given. This time could mean a few things. It could mean I can make more money to improve my quality of life. It could mean I have time to try taking a class or two and see if going back to school may be feasible in the future.
Mostly, it’s an arbitrary number for my doctors to feel as if I have goals despite being a Very Sick Person. Saying I want my severe pain to be limited to 30% of my month feels like a much more manageable goal than I want more than 5 full days of pain freedom each month when I typically am graced with 12-36 hours across each month.
My last article I shared my journey with various birth controls and how the hormonal imbalance really caused some problems this first part of the year with keeping my migraines under control. This ended on a hopeful note because in resuming the progesterone only medication, my migraine’s dropped tremendously and we hit that 30% number.
But as the month rounded out, that 30% wasn’t sustained and I found myself back at 40%. Back reaching for my meds as soon as I could. Back worrying about overtreating even if I’d just had a good streak. Back dealing with all of the emotions of feeling like I’m never going to get better.
This is part of a large cycle.
Treating migraine and living with a chronic illness means making regular changes to your medications and your lifestyle and as a result sometimes having months that look like you’re on the path to the rarely achieved remission.
What I’m learning however is that many things can be true at once. I can make positive changes that have positive impacts and not get better.
This is just what bodies do.
Just as my body adjusted initially to changes in hormones, it has adjusted now back to my baseline.
I didn’t do anything that made myself sicker.
It’s no different than a few summers ago as I started the lifestyle program and simultaneously quit my abortives, worked to move back out on my own vastly reducing the stress in my life, and changed my diet. These were all very good things that made positive impacts on my health.
My meds at the time were more harmful than helpful, as the meds I have now weren’t even on the market.
The stress in my life was unmanageable in the situation I was in. I find this kind of reprieve – whether tangible in my migraine frequency or represented in how clear my head feels emotionally – repeats itself any time I’m able to indulge in it. But, we also know that living on my own didn’t make my migraines go away, so it is just that: an indulgence.
Dietary changes too are good. My gut health was incredibly messed up and fixing that probably helped in making the biggest impact on my life.
But back then? My support system didn’t encourage me to trust my body, they didn’t encourage me to move slowly or to rest, and any relief was monumental and must be further improved upon. The coaching I was receiving in that lifestyle program made the fact that I couldn’t sustain my progress out to be a personal and moral failing. So as time went on and my body took it’s new habits and began to regulate back towards my baseline, it emotionally wrecked me.
The reality is, there is no cure for migraine disease. It’s a neurological disorder. And positioning any of the positive changes I made in a way that would magically unburden me from the grips of disability wasn’t realistic.
Now, my support and my doctors especially recognize the importance in not pushing. In acknowledging that we should first work to see if any changes are sustained before continuing to tinker with adjustments. My friends remind me to slowly work my way up to things. They remind me to put myself first and be firm when I’m asked to stretch myself beyond my limits. And when I pause and say I need to stop, I need a break, or I need to push something back, they thank me for honoring what I need.
The difference in support is huge all on its own.
But perhaps the most important part in learning to be gentle on myself as I simply wait and see how things will unfold is allowing part of myself to believe that it’s simply a part of the cycle and that my good months were in fact good, but maybe pain that is so constant and that gets so bad causes us to be a bit unreliable in how we self-report pain. And not unreliable in the sense that we shouldn’t be believed about our pain, but unreliable in what my severe pain is this month versus last month.
I, like many other pain patients, have developed a pain scale that I use to identify how I’m feeling so I can track how I’m doing. But this month, when I look at my level 7 pain a special number that indicates that the pain is present, constant and distracting but not quite to the point where I cannot continue to function through it, I find myself wondering which “7” it is. Years ago I had tracked 7 and 8 as the same color, 8 being a harder to work through and much more distracting version of 7.
I broke apart 7 and 8 when I realized I was frequently having more distinctions between the two. One of the largest was that if I hit level 8, I usually needed medicine, but that if I took medicine while still only in level 7 pain it didn’t seem to work all that well.
But this month, I have level 7 and level 8, but I look at level 7 and once again feel as if I may need to break up how I’m describing it. I question if the level 7 I had one day where the pain was there but I still listened to my music while I cooked, I still found time to read, I still talked to friends on the phone, I didn’t feel drowsy or have other symptoms is the same 7 as I feel two days later where my eyes are heavy and my neck is sore, but I can still sit in front of my computer for hours and get my work done unimpeded.
It is less relevant if these occurrences of 7 are the same over a few days and more important over a few months. Because perhaps when I see these months of improvement, where the pain seems lower and I feel like I can do more, is simply because of the months prior where the pain was higher. A bit of a placebo in reporting accuracy. When you’re in the throws of more frequent severe pain and you come out of that, it’s like a breathe of fresh air.
Because I am able to do more. My meds are working better than they had been. I am in less severe pain.
And perhaps this skews the first few weeks a bit more towards reporting that I’m feeling better that I have been and as the weeks continue on, rather than being in more pain my brain is simply returning to it’s more regular reporting levels because I’m comparing to a more comfortable baseline and not a time where I was in more severe pain.
It’s like a honeymoon phase of relief. Maybe nothing really changed. Maybe that can be comforting in acknowledging that this moment today where I take my meds and begin counting down until I can take them again isn’t a worsening, isn’t backwards progress. It’s just the cycle our bodies and minds go through. Like the way 60 degrees feels on the first sunny day in Spring.
So I ask my mind to let me down easy.
To not wander to the darkest corners or hang onto old feelings imposed by other people.
To release the ideas of positive progress and negative progress as those are unfair expectations to place on something that might never get better.
To remember that I am still moving forward, even if forward progress is simply forward in time.