This post is a follow up to my piece Disabled on Paper written in January of 2019.
The first of the month is always a special time for me. I get to sit back, gently take on the morning and forget about all in the world that needs to get done. I slowly finish filling out my charts in my bullet journal and spend a good hour or so glancing back at the previous month.
I calculate the good days and the bad days.
October wasn’t great, I reached 48% of the time being at a 7 or higher pain level – which isn’t all too great. However, it has been six entire months of not going over that 50% marker. And that in and of itself is a huge achievement.
So after the calculating, I sit and sketch out new charts. A clean slate. A new month. New goals. New opportunities.
Funny, back in January I typed out that I couldn’t set goals.
It was this crushing feeling that came with having this acknowledgment from the government that I was medically disabled.
Day 305 of 365.
So since I clearly can’t set any goals, lets look at everything I have accomplished this year, based off of goals I did actually set:
- I exercise or stretch every single day.
- I successfully developed and refined a morning AND evening routine that allow each day to be optimized for success.
- I successfully learned how to manage my medication intake.
- I shifted to having a strong focus on positivity, encouragement, and finding joy in the world around me.
- I finished reading 1984 and am 1/3 of the way through Stephen King’s The Stand and I also read The Subtle Art of Not Giving a F*ck.
Why does a government recognition of a disability hold any actual merit on how I feel?
So, I was wrong. Maybe I felt defeated. But, I certainly am capable of setting goals and reaching them.
But, I am disabled… really… I mean it in whatever sense of the word you want to try and tell me is false.
Last year, I was almost completely bedridden because of an adverse reaction to Aimovig.
In February, I was bedridden again. There was this brief glimmer of hope between the Aimovig leaving my system and the Botox entering it. Until of course, the Botox froze my neck and left me with permanent damage to the muscles.
Stopping my abortive medications was a huge step in the right direction for me. It allowed me to live through each painful, excruciating attack and not have to endure it all over again with a rebound headache 36 hours later. For me, this is the right option, for others the break between the pain and the rebound is enough for them.
A few weeks ago, my doctor told me he didn’t think I should really be looking in to new medications because as long as I was convinced I’d experience the side effects, the medications would be useless. No offense to his professional opinion, but fuck that.
Am I looking into new medications? No. To be frank, I’m not.
Not because I’m afraid of the side effects, but because I don’t think the medications that are currently on the market have 1) enough research backing their effectiveness and 2) side effects and potential long term effects that make them viable for a twenty-two year old to take for an extended period of time.
And these comments aren’t directed at 90% of the available medications… why not? Because I’ve already been on those, so it leaves a small portion of mostly newer medications that I don’t find to be very trustworthy.
Having medication doesn’t make me more or less disabled.
I am on medication, I have some abortives that are reliable on some instances. The most effective treatment, is time and rest for me.
Having an apartment and living on my own doesn’t make me more or less disabled.
Having a cane to help on days when my vertigo is beyond my control, doesn’t make me more or less disabled.
I am disabled. My specific disability ebbs and flows. It flares. I don’t know if each flare would be each individual day spent in high pain or if it should be more broad to a week or two of worse pain. Whatever the case, the summer to fall transition has me in a flare.
But going back to last October, the most miserable month of my life thus far – everything is very different this October but that doesn’t mean it is better.
I am not in fact bedridden, but I am for the most part home-ridden.
Last year, this idea of “brunch” was huge. I was devastated by being totally unable to go through with my birthday plans and enjoy a quiet brunch. And when I did make it out to brunch for my mother’s birthday, I was so violently ill it didn’t matter that I had in fact gone out.
For anyone who missed the mess that was this October, I actually fucking MOVED on my birthday. And you know what? I had my fucking brunch.
And I was really, really sick.
My parents got to my apartment to help finish up with the packing, bagels and lox in tow. I was useless to them. I was hit not so much with head pain, but with stress induced nausea – because hey, I wasn’t planning on having to up and move. And I stood for like two hours, propped up against my kitchen counter as they moved around me packing up my bedding and some decor.
And they kept asking me questions. And every question got shot back with an angry “I can’t answer you right now” and eventually it stuck. I was too sick to even communicate, because with every attempt to open my mouth and talk I was ready to projectile vomit.
But after a few hours, I sat down and I ate my brunch.
The next day when the movers got everything into my new apartment, I sat on my floor with my mom at dinner time and I ate the leftovers of my brunch.
For whatever reason, I kept pushing to unpack that day and spent the next day unable to leave my bed. But hey, at least in that instance I can say I truly pushed myself too hard.
This all brings me to last night. Halloween is by far my favorite time of the year, and I got all dressed up to celebrate knowing I certainly wasn’t going anywhere and snuggling up in my costume and watching horror movies was a perfectly acceptable and fun way to spend my night.
Spoiler alert: that is not how I got to spend my night.
I felt relatively awful all day, so I knew it would most likely be an early night and that my plans with Torie would have to be postponed.
I got dolled up. I took a bunch of fun photos. I cooked dinner.
I realized how much the pain was increasing. I slowly sat on the floor and began dismantling my efforts. Now, I don’t know how many of y’all have ever unclipped hair extensions, but doing it with a full blown migraine is not something I would recommend.
I was able to shift to the couch and lay down.
The “severe storm” that I had been warned about early in the day, began to roll in. I relocated to my porch swing to watch the lightning. As it got closer and more humid out, I crawled inside my door. And that is where I stayed.
I managed to pull my bear down from the chair he was in. I was able to reach my blanket. For a while I laid their watching the lightning show, but eventually I was just laying there. Holding my head. Involuntarily crying as the pressure got more and more intense.
I remember at one point I had gotten outstretched and my arm was just laying across the carpet. I heard a neighbor’s dog barking and all I could think was that if someone were to show up, they’d be certain I had died. And I fell asleep.
Somewhere in the night I made it to my bed. Even managed to take my medication.
And then the pain broke.
I woke up to the migraine tornado I had left the night before:
I couldn’t even crawl to my bathroom to find an abortive medication that may or may not have helped the pain.
Maybe I should have been in the hospital. All I could think as the pain got worse was that some knight in shining armor would bust through the door – with that barking dog – and they’d carry me through the monsoon outside and I’d be hooked up to fluids and medication any minute. I’d be soothed to sleep by the Benadryl and steroid taper and I’d awaken hydrated because they’d pumped me full of all the fluids I needed.
But I laid alone, in the pitch black, until it eased on its own.
So here I am.
Planning out my month. Deciding to track some stress and what causes it so I can start to really focus on that. Scheduling much needed doctor’s appointments to bring up my concerns of other undiagnosed conditions.
At the beginning of the year there was so much I thought I couldn’t do. The thing is, I just have to do things differently and there is nothing wrong with creating alternatives that bring just as much satisfaction to my life.
The struggles will remain the same.
People will continue to come and go. People will be angry and disgruntled with what they can’t control. And they will leave. And I will wish them well.
I can have my brunch. I can have my brunch whether it is my birthday or not. And I will eat it too.
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