...You must know why.
My writing might seem a little bit dramatic as if I am romanticizing this condition because this is exactly what I am trying to do.
CM1 less than 3 mm and, unfortunately, extremely symptomatic in bursts throughout the year (no timing whatsoever - it can be gone for a year and then return and happen every 2 to 3 weeks for two months).
My flower bouquet is:
- Crippling migraine
And I mean "crippling" literally. I am afraid to breathe. And maybe to blink? Because it sends those sparkles and needles and knives and hammers right into my brain. Migraine is usually focused (but not restricted), surprisingly, not in the back area, but rather in the outer middle-to-temples parts. In the area where I would wear a very broad headband. (Oh and I actually can't because that's at least a minor headache guaranteed in 10 minutes).
- Strong non-migraine headaches are far more usual for me, once-twice a week is a norma, but they can also disappear for a long time.
- I don't mention constant dizziness of varying degree because it goes without saying.
- Aura
- Narrowing field of view + numbness always in one half of the body (we, me and Chiari, don't have preferences - it can be right or left; the aura usually appears in the contradicting eye: e.g. right eye - left part of the body)
This and the aura sometimes kick in before the migraine but absolutely always mean the migraine will follow, whereas the migraine coming first absolutely always means the numbness etc. won't follow and it will just hurt until it stops in 6-8 hours (it's a better scenario for me, I am in terror when I'm numb and can't see or read or speak properly).
There is a curious dynamic in the first case: they work in cycles - the seizure starts with aura/narrowing vision/numbness which I gradually realize (but not at once, so sometimes I would read a book or watch TV and understand the words just feel or sound weird - that is a tell-tale sign) and then they will come in turns - e.g. numbness+aura, a sharp migraine, numbness (no aura from the second round on), a migraine, numbness, a migraine... for 4 to 5 hours). On the third-fourth migraine round I have noticed I can do... pushups and they shy away the pain for 10-20 seconds (don't look at me like this - I have resorted to a whopping range of amateur techniques to ease the pain). This is all very consistent when it starts with numbness+aura, that is why I'm explaining in such details.
Then... In April 2015 something went wrong in my system.
On a morning after a sleepless night full of coffee I woke up after a nap feverish, with racing heart and shaken by enormous tremors - this all I couldn't control. So, not knowing it could have any connection to my condition, I have overreacted and had my first panic attack after which things just plunged down and I have found myself to be in a darkest place for 7 months being depressed and masking it.
At a hot July Tokyo night I woke up at 3 am with I'd say 80% of my field of view gone... and my head feeling like something that was not supposed to be on my shoulders. I was severely nauseous but couldn't vomit at all. I was an aching cotton ball and I thought my blood was liquid fiberglass. I felt my pulse everywhere but most of all - behind my eyes which could barely make out the position of objects. Everything was moving.
The ambulance arrived fast, and I was waiting for it alone by my house under the summer drizzling rain in my pajama and a warm cardigan because I was overcome with tremors. Surprisingly, I was grave serious and calm and extremely concentrated on the task: waiting for the ambulance doctors to entrust them my body and finally feel miserable and ache freely like I so wanted to.
Now, those who had the marvelous opportunity to ride Tokyo ambulance know that they won't even start moving the car before you give them your medical plastic card and they input the data and check all the hospitals in their system - it takes approximately 10 minutes. You're sitting in a small ambulance car for 10 minutes about to pass out of unbelievable pain and they measure your freaking blood pressure. Finally, when I was in ER they put me under some IV the name of which I can't recall because everything I was told was generally a mess of sounds. Very slowly I started to feel like I could breathe and not explode. I remember I called the doctor 天才 (genius) which was the most awkward thing but I was seriously ready to kiss his hands. The nurses were laughing and that was one of the last sounds I have heard before they put my bed in the cold dark corner and let me sleep till 8 am.
And I woke up. And I was alive after the first IV of my life. I left the hospital by myself and I remember how the air smelled.
I remember my morning after the first seizure. The night before I was afraid to fall asleep, exhausted and broken, because I was gravely sure I was dying.
Before I knew I slept at all I woke up. I took my cellphone in my hand because I was adamant about going to classes even in this condition. My hand with the cellphone dropped on the sheets. It weighed a ton, no less. I couldn't make a fist. I was hungry. I was serene. I felt a masochistic pleasure of overcoming something this terrifying. I felt unbreakable. I remember the morning was gloomy. And my mother took me to the hospital. The air smelled like rain and I was hungry for it forever.
That morning in June the air smelled of rain, too. My grey-skinned face was staring in the taxi window. My inner elbow smelled alcohol and I could sense it through the cardigan. I came home to my wrecked room, shut the curtains and dropped face down into my bed.
The world didn't exist that morning. I have betrayed myself again. I have called for my own help again, my body was screaming for my attention. I have taught myself a lesson once more. And I felt bottomless hunger for life. Because I was alive. And I am.
I am still, fighting insomnia, tremors, migraines and headaches, and most of all - my own stubborness. It sounds silly but I never previously emphasized my own need for some self-love. But now what I consciously direct myself to be thinking is the oceans of tenderness and gratitude towards my own body that is working its ass off to keep me alive and increasingly happy. The body that, being sick, took me through all of my young adult's struggles, through war and through moving to another side of the Earth - all while being far from its best shape and using its last resources. But I have to understand that sometimes what my body needs is consideration and recognition. And it tugs on my sleeve (headaches) or slaps my face (migraines) or punches me in the gut (July night).
* * *
I feel the need to apologize for the TMI and sincerely thank any crazy soul who would read it - after all it is my first time sharing half of the details with someone who understands after more than 2 years of coping.
I might be kicking and swearing and screaming bloody murder when I'm in pain or the world is a blur, but right now I wanted to catch the moment to introduce my case and to show how one could sometimes have hate-love relationship with this condition bordering on masochism-as-a-coping-mechanism.
I wanted to show how life is a pit of terror and simultaneously a cold but sunny morning kind of beauty. It's okay if I am drowning sometimes. I am never going to feel the same way as before March 2013 when I was diagnosed. But I don't need it. I have discovered a treasure in this hell. It's trying to break me but it's not succeeding; I didn't break and I don't plan to.
After all, we all gotta have some rigor.
To whoever is reading this now, you can talk to me any time you want to. I'm not super-strong or experienced but I'm ready to do what I can. I want to be there for you.