A few nights ago as I soothed my head with the hot water in the shower, doing my best not to massage the back of my neck too much resulting in more pain, my mind wandered back to the before times.
Twenty year old me didn’t really understand the value of rest. Rest and relaxation that restored some of my health was completely foreign. But so was the rest that simply maintained myself at the level I was at. I think I thought I was doing it adequately, but with no one to look up to to guide me on how to best live with such a debilitating condition, the only thing I knew how to follow were my own goals that existed without illness.
I’d just moved out completely on my own, was working close to full time while attending school full time, and my priorities were to pull any extra shifts I could to pay off my loans while they were still active, to excel at work and stand out as someone who had a bright future in the field, and to finish school within the desired 4 years despite having transferred and change degree paths. These were shitty goals all things considered.
Migraine was a major inconvenience and although I’d sought accommodations through school they were not designed to help me rest and recover. They simply existed to allow me to miss class if I needed to take medications that made it unsafe to drive. I was simply at home some days participating in classwork and projects, sometimes doing alternative essays that would count towards in class participation points. I was not resting.
The pain then was incredibly bad.
I would stand in the shower, lavender bath salts lining the shower floor to steam up and provide some relaxation, and I’d stand under the burning water massaging my head and face and tender neck muscles. It was sometimes the only time throughout the day that I’d have anything that resembled relief.
I don’t find myself needing that much anymore. I find I rarely am at a level of pain that prevents me from showering – although I think much of this has to do with learning to shower in the dark.
It occurred to me that maybe my pain is better now than it was then, that maybe I’ve been well onto my way to recovery this whole time.
There was the day I missed my English Exam. I remember it vividly, it was one of my first blog posts – A War is Waging, And I’m on the Losing Side – and I go back to those feelings occasionally. I was living in a bare apartment, all I had was a sectional which at the time was also my bed.
The pain woke me up well before an alarm clock could. Over the course of the evening before, that day, and likely the next morning I took an ungodly amount of medication in an attempt to dull the pain, like 11 pills ungodly… The pain didn’t crack. I cried texting my best friend trying to decide if I should stay home, which she convinced me was the best course of action.
And I laid there on that grey tweed like Ikea sectional for 36 hours. I could barely move. I had a few slices of toast and probably some eggs. The pain kept me from sleeping during that time. I missed my exam. I missed my massage therapy appointment. The only thing I managed to force myself to do was pick up my grocery order.
Those 36 hours and every implication of what happened forced me to really question everything I was doing.
I look back on how I evaluated pain back then. Even the worst pain took a backseat to priorities.
It wasn’t until now that I can see the stark difference in this condition, not because it’s necessarily any better, but because of the way I move through my life now.
Back then I took sometimes 3 or 4 doses of pain medication a day. I was forcing myself to be awake often at 6:00 AM. I never ate lunch at consistent times, especially when I was at work, as retail doesn’t really accommodate typical eating habits. Most days were 15 hours long, with maybe two or so hours to myself in the evenings. If I had a day off, I was instantly bed bound. No time to make food or do laundry or tidy up my space. It was like every week I’d push to the point of collapse and spend any off time in that horrendous collapsed state.
Now, at twenty-three and almost completely removed from all of those expectations I am fully unwell, but this unwell is a different story because instead of rebelling against my own body, my experience is viewed as a rebellion against society as it should be.
I meet my body where it’s at, day after day after day. And although sometimes I’m met with a deep sadness of where I’m at within the moment, there will always be another day.
Much of my day is spent resting. I understand now the phrase “rest is a form of rebellion” that has become more commonplace this year.
My nights are full of restorative sleep. The combination of melatonin, an incredibly comfortable mattress topper, a humidifier, oils when needed, and an Allay lamp when needed allows me to rest well and deeply each night. I can’t remember the last time I was awoken with migraine pain. More often than not, pain that trickles in towards the end of the day is vastly reduced by morning.
My days are filled with rest designed to maintain balance. I rest in the mornings, allowing my day to start slowly and mindfully. I rest after breakfast to allow my body to catch up while other symptoms calm down. I often rest late in the afternoon, reserving energy to cook dinner.
I don’t really know if people who aren’t also sick can picture what my days are like nor how they could possibly be satisfying more often than not.
The pain never really ends, and there are more pains now, but the torture within my mind of striving to fit within expectations of producing labor and being a productive individual are gone. If I rest more because the pain or brain fog prevent me being active, then I simply must rest and any internal qualms have been quieted for years.
I have a few hours, every few days where I’m doing alright and not dedicating my time to symptom and pain management. I could not practically commit to working or revisiting my education in that time though. Those hours are often spent cooking and caring for my plants, which in reality are two very basic level needs that are for the most part met. But there isn’t much left to extend outward after meeting those very basic needs.
And that’s okay.
I share this story because I spent a long time thinking that analyzing my pain charts and waiting to hit a certain threshold with lower pain would allow me to go back to where I was before I left it all. And the truth is, I was in a very bad place for a very long time and getting back to that should never be a goal. That recovery and picturing a return to life, should be something so miserable is a bit horrid.
The truth is, I was sicker then but I was lying to myself as I aided in my body’s own destruction, and where I find myself now can really only be described as the consequence for a lack of intervention. So, to compare what the pain was like then to how it is now, is rather obsolete. These are two different bodies in two different circumstances that are beyond compare.
I am unwell, yes, but that’s okay. I think there’s a lot to be said about where I’m at now even in acknowledging that I’m not currently close to any sort of remission, that my pain has worsened. That it is flaring. And that accepting it is a rebellious act.
Most of the spaces around me embrace and would celebrate the person who forced their body to break, but simply put, I reject those beliefs. I reject that that’s how life is intended to be lived. If I need more rest, then so be it. If the pain never goes away, then so be it. But it’s rather bold for so many to believe that this wouldn’t be a life worth living, a life that can be fulfilling, and so one without returning to a space where I must break myself.
I won’t hold myself to the standards that got me here in the first place.
That will never be my end goal.