It’s just a ride

The word ‘migraine’ usually conjures images of the headache part. My headaches tend to start gradually with a prolonged aura (35 – 55 minutes) that bleed into pain, nausea, extreme hypersensitivity and zombie-like fatigue. I may walk and sort of talk but nobody’s home. The last ten days have been headache central. Not one continuous headache, although in some ways that may have been an improvement, but prodrome, aura, headache, postdrome-prodome and around we go again. The prodrome for me is usually quite subtle, the muscles in my neck feel tight and sore, as usual, I’m tired, as usual and irritable, a little more than usual. I tend to want to sleep more and now after establishing that it doesn’t affect the headache, I allow myself to do so. It seems prudent as I can’t sleep when my head hurts, so I may as well enjoy sleep before it runs and hides. A very strong sense of jamais vu added itself to the prodrome phase this week. It’s the weirdest feeling in the world for me. Also one of the most frightening. I take comfort in familiar things and people and to suddenly loose all sense of familiarity is a big deal. The first time it was surreal, unexpected and created that on-the-tip-of-my-tongue-feeling. I knew I should knew what it was, it has happened before, but not that recently and not that often and so I couldn’t recall the meaning. I can now imagine that a second before the seizure started it all made sense, but I’m not sure how real that memory is. Maybe it’s just a comforting afterthought that I inject when I think about that moment to make it less scary. After the first, it filled me with a quiet sense of dread. Nobody likes having a seizure.

The aura has been more than a little interesting this week. I get atypical migraines in different shapes and sizes and strange and rare aura symptoms are part of the package, but it’s been an unusually intense and bizarre cluster of events. I’ve had migraine headaches since early childhood and aura’s for more than half my life and with frequent headaches, it was bound to happen like this at some point and now is as good a time as any, with the heatwave and sudden weather changes thereafter not helping. I’ve lost count how many aura’s I’ve been through in ten days. Five, maybe six. Four are memorable. Three because they contained a seizure each and the fourth for winning the prize for the weirdest neurological sensation ever. Numbness mixed in with pins and needles that started at my hands and feet and moved upward to everywhere. I couldn’t talk because my tongue felt funny and wouldn’t respond and it made me realize that my brain felt funny too and wouldn’t respond. It mingled with the shimmering and zigzag lines that was slowly engulfing my field of vision and suddenly I felt trapped in a kaleidoscope, all body parts and weird sensations, detached, disjointed, falling down a tunnel of rainbow lights with rough edges with the sound of wind rushing past hurting my ears. I was watching the Michael Jackson memorial service. Chris came in, turned it off and was sitting on the couch, watching me, timing it, hoping it would stop soon and just turn into a massive headache. It did morph into the thick pounding protest in the back of my skull that basilar type migraines always are.

The headache phases have been less interesting and much longer. The aura leaves me tired, listless and in so much pain that my brain stops working well. I am incredibly sensitive to light, movement and sound. I stop eating, throw up when I try to and even when I don’t and spend my time mostly almost equally divided between the bathroom floor and the cool darkness of my bed. Basilar type headaches have the advantage of allowing more activity. I’m not so hypersensitive, but dizzy and a little detached instead. I feel like Alice that has tumbled down the rabbit hole and my perception of the world is distorted but not excruciatingly painful. It’s a very lonely place to be. I can talk a little, type a little, but mostly I don’t as I’m never sure what exactly will come out of my mouth. I get obsessed about little details and can’t let go. At the time, I simply feel out of control. Afterwards, I feel stupid for not showing better control and restraint. It’s a very difficult and awkward place to be where someone else has to be nice because you’ve lost touched with reality a little. As time goes by, I exclude more and more people and things from my world and put on my brave face. The one that says ‘I’m okay’ even though we all know that I’m not. It’s not so much a façade as an attempt to not let headache world swallow the real world. Headache world is fantasy, it’s fake, it’ll go away soon. The real world never goes away. It is always there and needs living in. I sometimes try to keep putting one foot in front of the other, but invariably, I give up and retire to bed with a book or a film if I can and retreat to the quiet dark with the cat that’s an expert at providing quiet comfort. I try not to feel guilty for giving in so soon and giving up on people and I try to remind myself that it’s the right thing to do and I haven’t done anything wrong or bad, it’s just that  Alice goes to Wonderland alone. After hours/days spent in semi-consciousness where time does not exist and I’m awake and asleep and possibly a little delirious from both lack of sleep and being in too much pain for too long, I finally find the key that unlocks the door to blissful sleep. The kind that lasts for more than an hour and doesn’t come hand in hand with old nightmares. I sleep the sleep of the dead and wake up to the migraine post-drome.

It can go two ways. The first is my favourite: euphoria. It’s what I imagine someone with bipolar disorder feels like on a very high high. It feels like I can do anything, as if I can feel every molecule in the universe and I’m a part of it which connects me to everything. Chris comes home and I’m wearing a dress and dragging him out to Avebury without crutches or braces and I’m mesmerizing enough that he lets me. I don’t notice when joints don’t stay in place, I’m not fussed by bones moving and standing on the hill looking out over the stone circle with the wind in my hair and a few stray raindrops landing on my bare legs giving me goose bumps, I’m happy. We drink coffee sitting outside and drive home listening to music and its not until a few hours later that I crash and burn. The postdrome turns prodrome and I know that next time I probably will not be as lucky. The aura will be taxing, the headache nauseating and the next post-drome will be what a manic-depressive feels like when they hit rock bottom. I’ll feel hungover, tired, fuzzy, sad, lonely, dizzy, hurt-all-over with a still lingering sense of sounds being too loud, movement being too fast, light being too bright and touch being like an electric shock coursing through my body. It will linger for hours until, at some moment, the dizziness will intensify, my vision will blur and then erupt in a rainbow of coloured disorientation, I’ll hear the ocean rushing in and know that we’re back at the beginning of the ride.

Ten days ago I was still trying to get on with things. Not in a bad way, but in a constructive way, working within headache set parametres. Doing things when I could, taking lengthy breaks when I should, but trying at least not to let the headache world engulf me. Yesterday, I spent the whole day in bed listening to an audio book, drifting in and out of consciousness. I had a couple of good hours in the afternoon and used them to watch Pan’s Labyrinth and all used up I went back to bed and my ethereal state of semi-consciousness. I got up at eight this morning, feeling a little better, but then the post-drome became pro-drome and now that the flashy lights are starting and the screen seems to be shimmering it’s time to stop and wait for the headache phase to hit like a ton of bricks or a big truck or more like it’s immovable but I am falling into it. I let myself fall, struggling just makes it worse. Eventually, it’ll stop. Summer will end and it will be autumn with pretty leaves and cool weather and seven-hours sleep every night. I’ll still dislocate my shoulder turning over in bed, but at least I won’t dislocate my shoulder and only realize an hour or two later that I had done so. The migraine headaches are their own kind of hell, but its the extra’s that really get to me. It’s a constant reminder that I don’t just have headaches, I have headaches because I have EDS and the headaches are just a small albeit very viscious part of the package. I may not be my genetic make-up, but some weeks, there seems to be very little left outside of it. I’ve struggled to not loose myself in it, but at some point, after ten days of mostly sleepless nights, constant agony, struggling to make sense of every small part of the world, I give in. To the pain and the dark and the storm that seems endless. I give in, but I do so with a quiet faith in myself that I didn’t know I had. It’s just another summer and big chunks of every summer is like this. It’ll be okay eventually. It’ll be like a hurricane blew through my life, but I’m good at picking up pieces. Sometimes I am just helpless. And giving in is not the same as giving up.

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  1. “And giving in is not the same as giving up.”

    It never is.

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