It started slowly after a lovely day. Monday. Monday was the first true day of spring.
We set out for an Extreme Easter Trail at Foxbury in the New Forest, arranged by Cadbury’s and the National Trust. It was extreme.
Supergirl learned how to make fire with a spark, made smores (toasted marshmallows) over an open fire and I spilled hot coffee over my clean jeans because I overreached and thought I could manage a disposable cup.
We watched chainsaw wood carving, she coloured in bugs, we learned the names of ponies, birds and cows and afterward, sat down near the car park on a picnic blanket. The first real picnic of the year. It was a near perfect day. I started to feel tired. To be expected. It was also a long day.We came home early.
My head was throbbing. Not surprising. It was the first sunny day and I don’t have contacts or prescription sunglasses. I felt a little dizzy, didn’t feel like eating dinner and went to bed early.
Tuesday was a bland day. I was tired. Irritable. Restless. Moody. Grizzly. Everything hurt a little more than it should. My right temple was beating like a drum. I was more tired than I wanted to be. I couldn’t concentrate. Words were a difficult find. I am not sure I ate anything all day. Thinking through molasses, I realized that all was not quite well. I hoped I was just tired. I couldn’t sleep. Insomnia is never a good sign. I watched the sun rise Wednesday morning and thought, this was going to be a long day.
It was. The headache was building. The air had the same feeling as it does before a thunderstorm but only I could sense it. Words became harder, I fell a silent. I was too tired to leave the house. The sunlight was too bright and all the curtains were drawn. I didn’t eat much. I wasn’t nauseous, just not hungry. The drum in my head was getting louder, drowning out all sound. I made a point of drinking plenty of water, worried things might get worse.
Thursday was the day I had been dreading. I woke up early, before the birds. The light had a strange quality as if it was made of snow. Not the real kind, but the static seen on old TV’s. Flicker flicker, zap. I saw a flash. I sighed. The familiar aura symptoms followed. Visual at first. Then auditory – the sound only I can hear. Then the smell of smoke. I knew I was in trouble. Only really bad migraine attacks have the smell of smoke, the sound of sun beetles and the brightness of a lightning storm over a dark ocean.
It seem to pass quickly. I drifted off to sleep, then woke up minutes later. For a moment I thought someone had stabbed me with a knife, wedging it into my right frontal lobe. I was nauseous and dizzy with the pain and stumbled to the bathroom to throw up. Once started, I couldn’t stop. My stomach kept heaving long after it was empty. The pain intensified. I was getting confused. Words were far away. I couldn’t explain, couldn’t move, couldn’t stop retching.
Lucky for me, having lived with a chronic migraineur for 13 years, Chris knew exactly what was happening. He held my hair, cleaned my face, stroked my back and reassured me that I didn’t have to talk. I relaxed. He helped me back to bed and I lay down. The worst day of the year, maybe two or three years, had just arrived.
I spent it in a dreamlike state. I couldn’t keep anything down, not even a mouthful of water. I threw up every 30 minutes, regardless of whether there was anything to throw up. Severe migraine attacks happen in mini-waves for me, each about 30-45 minutes at the start, then lengthening once it starts to improve.
It always starts with the pain. The stabbing pain like a butchers knife twisting in the side of my head, throbbing and stabbing at the same time. It builds and builds until I feel violently sick. I throw up. I shiver. I feel cold. I throw up again. I am physically cold to the point where my hands and feet are a dark purple and light blue. If it lasts for a few days, the vasoconstriction is severe enough that I get chillblains in the middle of a hot summer. I feel better after throwing up, usually better enough that I can lie down and almost manage to remain still.
The pain is still there, it doesn’t dull much, but the nausea fades and I feel as if I had taken some futuristic street drug that is turning into a bad trip. I feel as if I am dreaming. Sometimes I am. I drift in and out of sleep, my only reality is the pain. I can’t move. The smallest movement, sound, light or smell and the pain shoots up, making me nauseous and I am throwing up again.
If I can stay dead still, I get 15 minutes, maybe 20, where it is just me and the pain. I can’t move or talk. I lie still, motionless, eyes closed against the light, trapped with only my own thoughts. At first I can hold on to good things. Useful skills. How to relax. How to breathe normally. How to not sink into a pit of despair.
After 5 or 6 rounds, three or so hours later. I cannot. I am set adrift on nothing but insubstantial strands of nightmares. If I am lucky, I sleep soon. Mostly I am not. It usually takes half a day before exhaust myself to the point of sleep. On Thursday, sleep wouldn’t come. Fifteen hours after it started I was still vomiting every half hour. I hadn’t eaten anything. I kept trying to just hold a sip of water in my mouth, not swallowing. I was thirsty. I had a seizure some time in the night. Another in the early morning hours. I don’t remember much but the vague sensations of being trapped. Seizures always feel like a trap. My eyes are open and I can see shapes and light but there is no focus to it at all. Sound is absent, so is language or understanding. I can vaguely feel a small part of my body, if it hurts a like. A head banging against a cold floor, a kneecap dislocating – otherwise there is just nothing but shifting shape with no meaning behind them.
I always sleep after seizures. I sleep for almost three hours after the second. I wake up almost a person again. It is after 8 a.m. on Friday. I don’t remember the previous days, Chris has to fill in the gaps. I remember vomiting, crying, drifting in bed. All one blur with no time attached to it and no number. I don’t know if I threw up once or a hundred times. I don’t know how much time has gone by. My last clear memory is the sunshine on Monday as it hit my eyes when we left the garden centre in the New Forest early afternoon.
I manage a shower. Sitting in the bottom of the bathtub I have a memory of sitting here not so long ago, yesterday maybe? Tears and water streaming down my face, holding onto the hope that the hot water would ease the pain the way a drug addict holds on to the hope that their next fix will make all the bad things go away. It helped a little, I recall. The scalding hot water on my neck and scalp. It had helped a little.
I throw up after the shower. I have to lie down before I can manage getting any clothes on. Supergirl is helping. Chris is elsewhere, busy with other responsibilities. She yanks my shirt over my head. “Put your arms through, mummy”, she says, “come on! people are already here.” It’s someone’s birthday and we had plans. The plans had been changed. I think about it. Lunch here. Today. Now? Not now. Later.
I lie down for just a little bit. Supergirl tugs the blankets in around me and kisses me on my forehead. I say thank you. No. I think thank you. I think that I should say thank you. “Sleep mummy,” she whispers in my ear, “sleep and have good dreams, not the bad ones and it will all be better when you wake up, I promise. I will watch over you, don’t be scared.” I fall asleep thinking that a 4-year old should be playing in the sunshine outside. The sun is shining. There is a swing in the garden. She loves being outside.
I wake up near noon. I feel different. More coherent. As if the different pieces that had drifted off had come together again and settled loosely, almost touching. I take what medication I can. Pain killers, hoping beyond hope that it will help for just an hour or two. An anti-emetic. These never work for vomiting, but if the vomiting is better enough to just be nausea, they help for that. I take one. I drink a sip of water. A luxury today. An extra sip, not used for anything, just for pleasure. I am thirsty, but worried about overreaching.
The lunch goes well. I smile, I talk a little. I feel guilty. I lie down in the lounge afterward and even make it into the garden for a little while, sitting on a swinging bench. Talking is hard work. Words are hard things to find. My head hurts. The whole time I have to remind myself that there isn’t an axe sticking out of my forehead. There is no blood dribbling down my cheek. It just feels like that. I take a deep breath and another.
I smile. I use small words and short sentences. I make it through lunch without tearing out my hair or curling up on the floor, screaming and clutching my head. Those are things that has happened on other migraine days, during other lunches. Once in a restaurant among friends. But not today. Today goes well.
I used to feel guilty putting on a face and a smile. People deserve honesty, truth, but I don’t think people deserve the naked truth and brutal honesty. I think it is enough to say that I have/have had a migraine attack, to not eat much and when asked to say nausea is a problem and I wouldn’t want to throw up all over the table – in a polite way.
I don’t think anyone needs to see the agony, the pulling out of hair, the crying, screaming, the seizures, the unwashed hair and sweaty clothes. I deserve some dignity. I reserve the right to carry my pain in a closed satchel next to my heart. I deserve to have it not become all encompassing. I deserve two hours out of 5 days to pretend that I can still smile and mean it.
I go upstairs after lunch and the vomiting starts again and continues throughout the afternoon and into the nights. The waves come and go, tides ebb and flow, daylight fades into night and the silence is overwhelming. I can do nothing but wait.
I can’t read or listen to a book. I can’t talk or listen to someone talk. I can’t move without feeling as if a big wave picks me up and throws me on the beach, nauseous from the ride, vomiting up the nothing in my stomach. I do nothing. I school myself in lying still, breathing regularly, stilling my pounding heart. This too shall pass. It cannot last forever.
Saturday is better. It is not a good day, but it is the first day I ate something and wasn’t sick. I managed to make it out of bed and into a reclined lounging chair. If I remained still and quiet, I was able to read. I devoured The name of the Wind, eternally grateful that I was able to escape to another world and in this case, a mesmerizing world in an extraordinarily well written book.(If you haven’t read it, go read it!) I threw up twice, but not everything I ate. I could drink a few sips of water without feeling worse.
My head was still pounding to its own beat and thoughts still thicker than molasses, but I could reach a glass of water without needing someone to feed me a drink through a straw whilst I lay unmoving. It was much, much better. I didn’t mind that I couldn’t get up, couldn’t move well, that my silly joints were already telling me that this was the fifth day they hadn’t moved and my muscles were deconditioning very quickly. I shifted my weight and things went pop.
“Those are just bones popping out”, Supergirl, age 4, explained to a stuffed Rainbow Dash where she sat drawing on the floor next to me. “I am looking after my mummy because she isn’t feeling well. If I sit here I can hand her a bowl to throw up in or a glass of water or I can go fetch my Daddy if she can’t get the bones to pop back in”. She gave the little speech without looking up, too busy drawing rainbows and Ponyville. I smiled. There came a hum from downstairs.
“Drone is charged Rainbow Dash! Let’s go play!” She ran off towards the stairs, ran back, gave me a kiss on my forehead with a “I’ll show you the drone when you feel better. It is an indoor flying aircraft and Nimitz thinks its a bird!” I heard her clanking down the stairs, pony in tow. I relaxed a little more. Obviously being sick wasn’t too traumatic an experience.
Downstairs they flew the tiny drone – thanks OnePlus, great marketing gadget – and I can hear the whirring. It does not slice through my brain like sound has been doing for days. It is just a sound. It has no power or pain. It is marvelous.
Today is Sunday. Words have returned. I can smile and mean it. My headache is a dull throb in the bottom of my skull, faded and washed out. I am still not hungry, but bland food is again edible. The last week feels like it was a bad dream. I remember snatches, moments disorganized and shuffled. I had no sense of time and there is little chronology. I have written the timely details from the symptoms diary Chris had kept updated. It has not been a week for me, just one long night.
All Chris wants is a hot meal. He’s been living on cold meals straight from the fridge, sandwiches, salad, apples and chilled sausage rolls, because there isn’t time to make a hot meal, nor ingredients to do so as I do the grocery shopping and food planning. There hasn’t been a hot meal in the house for over a week. Supergirl wants to put music on in her room again. It has been a week of quiet tiptoeing upstairs with no singing, dancing or sound of any kind allowed because Mummy might be sleeping and if she isn’t, she will start crying if there is any noise.
Both husband and daughter have been very understanding. We all get migraine attacks. We all have chronic health conditions. We all know what it is like. Appointments have been cancelled. Today I’ve been caught up on family news I had been told and then forgot in a small delirium of pain and sleeplessness. I hurry to catch up.
The pain is still there. No appetite. No mention of food or I will be very stern. No sharp smells yet. No loud noise. The curtains are still drawn.
But the windows are open. And in some rooms, there is a sliver of light. In some rooms, there is the faint smell of cinnamon and honey. In some rooms, life is almost ready to be resumed.
Migraine attacks are truly debilitating when they begin like a thunderstorm in the night and last for nearly a week. The chaos they leave lasts another week and it takes times to get to where I was before. I hope the dull throbbing and faint nausea is gone by tomorrow. I hope the photophobia recedes. I hope I can again enjoy my sense of smell and the sound of music and laughter. I hope the next attack is a long long long long long long time into the future.
“Perhaps the greatest faculty our minds possess is the ability to cope with pain. Classic thinking teaches us of the four doors of the mind, which everyone moves through according to their need.
First is the door of sleep. Sleep offers us a retreat from the world and all its pain. Sleep marks passing time, giving us distance from the things that have hurt us. When a person is wounded they will often fall unconscious. Similarly, someone who hears traumatic news will often swoon or faint. This is the mind’s way of protecting itself from pain by stepping through the first door.
Second is the door of forgetting. Some wounds are too deep to heal, or too deep to heal quickly. In addition, many memories are simply painful, and there is no healing to be done. The saying ‘time heals all wounds’ is false. Time heals most wounds. The rest are hidden behind this door.
Third is the door of madness. There are times when the mind is dealt such a blow it hides itself in insanity. While this may not seem beneficial, it is. There are times when reality is nothing but pain, and to escape that pain the mind must leave reality behind.
Last is the door of death. The final resort. Nothing can hurt us after we are dead, or so we have been told.”
― Patrick Rothfuss, The Name of the Wind
* Article title is a quote from The Name of the Wind by Patrick Rothfuss