Much more than a headache

Monday morning arrived with an interesting twist. Migraine aura’s only make me panic when temporary blindness, deafness or a seizure is one of the symptoms and thankfully those are a rare occurrence. It’s as if my consciousness divide in two; part of me is simply the sum of the experience, all feelings and no thoughts, whilst the other is distant, rational, logical and disconnected. The rational part isn’t always present. I withdraw from people on headache days for two reasons. The first and most obvious is that pain is not something easily shared. The slightest movement hurts, the softest noise is earth-shattering loud, everything is too bright and vibrant and words often elude me. I don’t quite grasp the meaning, I feel lost and knowing that I am missing big pieces of the puzzle makes me feel vulnerable. I am easily hurt. I am all raw nerve endings and the world becomes a massive twirling thing that spins faster than it should, making me dizzy.

Chris says: “Stop yelling”. I look perplexed and say “I’m not yelling”. He slowly steps forward and reaches for my hand, his eyebrows in a question. I nod okay. Touch is an odd thing. It’s either that which made me start screaming or it’s the most soothing thing in the world. Depending on what my brain is doing right at that moment. He slowly reaches out and touches my hand. The chaos recedes and I smile a little. “Stop yelling”, he whispers. “Sorry”, I say. Sorry is something I say a lot when I have headaches. My actions get away from me and I get lost and nothing is what it seems and I say things I don’t mean when I am scared. He moves closer and I crawl into his lap whilst he strokes my hair and my back. It makes the world recede and for a second there is a timeless bubble around us and I know where I am. I am where his hands are and it’s a safe place to be. I fall asleep.

I wake up and it isn’t over. The world rushes back in and overwhelms me. The headache part of my headaches aren’t pleasant. Often it’s indistinguishable from having a stroke. The back of my feels too big for my skull and the pressure and pounding is deafening. It spreads out to the side of my head like a little monstering nestling into the top of my spine, streatching its small tentacle like arms outwards, enveloping. The curtains are heavy and drawn, but the dusky twilight of the room is still much too bright. Any movement picked up hurts my eyes. I tell the cat to please be still, don’t make a move, it hurts. Chris moves like a praying mantis through the house, trying to appear invisible. Sound is distorted and loud and the continuous buzzing noise that I have grown quite accustomed to has morphed into a loud and piercing shrill siren like sound. I am hearing from underneath the waves and the siren is not above but below, right next to me and I cannot turn it off. I cannot mask if with other sounds as other sounds are above the water, outside my head whilst the screaming noise is inside, underneath my skin. The spinning doesn’t help the situation. I am caught in a current, moved without wanting to move and the world spins faster than it should; I can feel it speeding up.  If I stand up, the spinning changes to blackness and I wake up on the floor with the cat sitting next to my head, watching curiously. Chris picks me up and carries me back to the couch. “Stay”, he says and fetches more bottled water and a bucket. I wobble to the bathroom and throw up. “How much blood?” Chris asks. “The usual”, I say, curling up on the carpet, “not much”, I place my cheek against the floor and misses the cold tiles we had in our last house, “don’t worry”, I say, “I’m okay”. I miss the cold, white tiles. Cold is soothing. Chris picks me up and carries me back to bed. I cry. He strokes my back and whisper reassuring things. I sleep.

The waking up is like a thunder storm. The room is spinning. I have pins and needles starting at my fingertips and running up my arms. My feet feel numb and the numbness is crawling up my legs. It’s a disturbing sensation. The room spins and I am not sure where I end and it begins. My vision doubles and the room is filled with blurry duplicates. I wonder if my eye lens has dislocated, but its not the same. Headache, I think, just a headache. Retina is not detaching, the flashy lights are not real. I can’t move properly. I try to call Chris, but I can’t talk properly. I can’t press the buttons on the phone, the phone seems weirdly shaped. I see buttons, but it’s disconnected. The rational part says ‘this is how a phone works. Pick it up, press the buttons”, but life is just a sea of mixed emotions and I stare at the Alice in Wonderland phone, wishing I could take a picture, it’s weird and Chris would find it interesting. He comes rushing in when the spinning knocks me into the wall. I get my directions mixed up and trying to get to the door I instead launched myself squarely into the wall. Oops. The rational part realizes this, but then it leaves and I am confused. Where did the door go? Why is there a wall? “Shhhh”, Chris says, “shhhh, it’s okay”. I try to talk, but can’t. “It’s just a headache,” chris reassures, “it’ll be over soon.” I know that words have become weirdly shaped and foreign and loosing words make me panic. He knows and makes more reassuring noises and says “it’ll come back. Just relax, it’ll come back soon”. And I relax against his chest until Alice in Wonderland walks into hell.

I prefer being downstairs on the couch. It’s 2 pm and Chris helps me settle in on the cool black leather. He wraps me in a blanket and says he’ll check on me soon. Language has returned but it doesn’t help the world make more sense. In fact, it makes the world make less sense. The words are no the words I mean and meaning eludes me most of the time. It’s back to confusion and raw nerves and I dislike that the only sound in the world I want is reassuring noise as the world is spinning to fast, I can feel it spin and it’s blinding and deafening. I loose all sense of time and space. I drift in and out of consciousness, in and out of sleep. Time stops, I disappear into darkness and then wake up without the crashing waves. Evening is always a lull. The headache with its demons recede enough that I can think a little, talk a little more, make sense just enough to be understood and understandable. I wake up and can’t sleep. Delay going to bed until 2 am as I know that sleeping will only rush in the inevitable and right now, right here, life is pleasant, soothing, interesting, just right. But sleep is a necessity and so I sleep, waking up on Tuesday to more of the same.

The headache builds slowly, but only in retrospect do I notice. Chris leaves pain killers on the bedside table before he goes to work which staves off the inevitable until noon. The world collapses in on itself in a manner of minutes and I go from thinking that it’s all bearable today to wishing I could just find an open door to oblivion. Chris intervenes, runs me a hot bath, sit on the side of the tub and gets his suit wet but doesn’t care. I love him for it. He leaves the doors open when he goes back to work in his office and sticks his head around the door every couple of minutes to make sure I’m not drowning. I think he still remembers the last time I passed out in the bath and went under and he had to fish me out from underneath the bubbles. The bath makes the pain and throbbing recede enough to make reading Anita Blake a little possible. I find it a soothing world to escape into. I have started again from the beginning and the bruising and scars and concussion symptoms are familiar and reassuring. Chris returns to get me out of the bath and back on the couch. I try to type, but words are made up of funny alphabet soup letters that rearrange themselves in ways that does not carry the meaning I want them to carry. I give up when the rotating room picks up speed and disconcerted, I sit up too fast and faint again.

Chris is just there when I wake up. We snuggle on the couch and I wrap my arms and legs around him and fall asleep whilst he watches TV very softly and strokes my back. It makes the chaos bearable and evening arrives with a familiar lull in pain and I can just about manage lying on the couch. It’s 52-hours into a headache that makes the world a confusing and haphazard place where the only thing that has any meaning are the words ‘I’m here now’. There are very few people that get to be in the room when my world collapses. It’s a private hell and I prefer falling apart without an audience. But left to my own devices, I fall apart into too many pieces that cannot always be put back together again. I know this. And that’s why rarely, occasionally, I open the door and let someone in.

I say things like ‘I have a headache’ or ‘my head hurts’, but that doesn’t come to close to describing  even the smallest detail of the experience. I’m not sure how Chris has come to be so good at putting up with the yelling and crying and head banging tantrums that I resort to when the pain is so overwhelming that there seem to be no exits. I doubt everything, I doubt everyone and it takes an infinite level of patience to go round and round with me on the merry-go-round of doubt. “I love you”, he says, “I just want to help”, he says, “I am here for you”, “Just trust me”. It takes infinite patience to coax me back round where the world is no longer upside down and inside out. I cannot trust my senses or my words or my perceptions and I know this and its this knowledge that creates the loop. How can I trust what I see and hear and feel and think when I’m not sure what’s there and what isn’t, what is real and what isn’t.

I have chronic headaches. They range from mild to severe so that mercifully its not complete chaos all the time. But most days, there is some chaos, some communication gap, some distortion of vision and sound, some disconnect between thoughts and feelings. When I was six, I knew the registration plate of each car that pulled up at the primary school gate. I used to have an eidetic memory and on the rare headache free day, I realize that I still do, but most days, my memory is a broken kaleidoscope of jumbled facts. It hurts. It makes me feel like an incomplete person. I miss spending my time playing things like Normal play Nim whilst sitting on the floor drinking beer and when asked what my winning strategy is, saying “finish every move with a Nim-sim of zero” and scribbling basic equations on the back of a peeled beer bottle label when words seem to confuse everyone in the room. When the headache starts, the answer receded to “I always liked the terms. Nim sims. Nim heaps. Nimbers. Not sure why. I wonder why?” That was my cue to stand up very slowly whilst my friendly neighbour came up with an excuse of ‘need more beer from her fridge’ and usually proceeded to pick me up and carry me home where kind soul that he was, he’d fetch a wet damp cloth from the bathroom, arrange it on my forehead, grab cold bottled water from the fridge, put a straw in and place it on the bedside table, draw the curtains, squeeze my hand, whisper he’ll come check on me later and grab a six-pack from the fridge before setting off to turn down the music in his flat. My fridge mostly held bottled water for me and beer for his parties.

I dislike the reality that I need to be taken care of. I dislike thinking about the logical loops that wreak chaos on any friendship because I can’t escape the doubt and confusion.I dislike not being able to play WoW. The unpredictability and disability of severe headaches are one of the most difficult things I need to live with. We’ve tried everything, there is no fix. Bad headache days are simply a part of life that is best dealt with by lying still and quiet in a dark and quiet room. I escape into audio books when I can as characters are safer friends, but when the waves start crashing down, I hold on to the words “I am here” so that I don’t loose myself in the chaos.

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3 Comments

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  1. I read this with tears running down my face, both in sympathy for your pain, and appreciation for the love that you and Chris share. I feel so privileged to be a part of your lives, even if it’s just through our words on a computer screen.
    Take care, my dears.

  2. Thanks, Carol. Don’t really have the words right now to say anything more, but I mean these : )

  3. I too, like Carol, feel blessed and privileged to know you. :)

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