It’s now Thursday, but I’ve had only half a day’s study time so far this week, because I’ve had a ripper of a migraine for the past three days.
For those who don’t know, migraine is a sort of headache. In Australia, 4.9 million people live with it. That’s a lot of people.
Intense headaches can be really inconvenient and really painful, but migraine is different. It’s more than just a “bad headache”. It impacts upon your entire body, and for sufferers like me, it can go for days. Today, I’m trying to rest a bit to recover from the migraine. The day after the migraine has subsided, I always experience a “migraine hangover”. The experience of intense, inescapable pain has a terrible effect on the body, especially when there are more stressors in your life than just the question of coping with the pain itself. For a busy mum like me who also supports a partner heavily in his work, the act of stressing about a looming migraine can make the migraine itself so much worse. As the pain sets in and my body is completely unable to even process light (let alone figuring out what my family will eat for dinner), the stress of knowing my family members must fend for themselves without my support is my hardest struggle. Coupled with the pain of knowing I am missing important uni lectures and other community, work or parenting commitments, migraine has the potential to snowball into a stress-pain-debilitation feedback loop that has gone for as many as five days at a time.
When I can feel the aura of migraine having an effect on me (flashing lights, brain fog, fatigue, “tuning out” involuntarily, nausea, loss of appetite and occasional dizziness) I must begin to prepare. I have to contend with those symptoms at the same time as trying to plan for migraine to impact upon my week, and any plans my kids and partner might have. Sometimes, I get around 6 hours of warning. On days like Monday, I get no warning. The pain settles in over about a 15-minute period, I get a moment to finish whatever task I’m trying to work on, and then I am out of action indefinitely. On Monday, it was so severe and so sudden. I was able to get down some painkillers and pick up my child from where she was, but that was all. Fast forward to yesterday morning, and the photophobia was so bad that I couldn’t even escape the pain of light by closing my eyes. The sunlight coming in the crack of the curtains was too strong even through my eyelids. I had to actually cover my eyes. The sensitivity of pressure on my eyes and head was so great that even an eye mask was too painful.
The pain doesn’t stop in your head, though. It becomes difficult to turn your head at all. Your neck is a column of aching nausea and a pillow becomes unbearable; you must lie completely flat. The intrusion of too loud a noise sends sharp streaks of pain through you. Pretty soon, you can’t even think at all. Your ears become strange and feel swollen or somehow blocked, but they’re throbbing at the same time. You start to find it hard to even utter a soft sentence to anyone. Every single tooth feels like its nerves are raging with sharp pain. The muscles in your jaw tense up and throb with agony… your eyeballs each feel they’ve doubled in size. Your body curls into a tight knot, trying to exorcise the pain through muscle tension in a futile measure to do anything at all about it. All you perceive is pain… all you can think about is pain.
The day after it subsides, all the muscles in your body are sore. It’s because of the tension you’ve been holding for however many days you’ve been carrying this bastard of a thing in your central nervous system while it threw a fit and forced all your other systems to engage in a confused panic. You get really hungry if you haven’t been eating due to nausea. The less experienced migraine sufferer might find they’re dehydrated.
An important thing to do once you’re diagnosed with chronic migraine is to educate yourself. If nothing surgical can be done (like with my situation), stay prepared at all times with your migraine tables at the ready in full supply. Learn how to relax your body as much as possible throughout the migraine’s duration. Learn your triggers. If you are someone who menstruates, figure out if you’re experiencing hormonally-triggered migraines. Keep a headache and migraine diary. Make an effort to distinguish between the two and keep your GP and neurologist informed of their frequency, duration and estimated triggers. Drink water constantly even if you don’t want to. Shut down your life sooner rather than later; do not try to “push through” a migraine, because the migraine will always win. Shut your bedroom down, get blockout curtains, do everything you can to manage stress, shorten the duration of migraines, and recover from them.
On days like today, I still feel angry that I got lumped with this condition. It’s so disruptive to my life, and now to my partner’s life too. My kids have both had to learn that migraine cannot be negotiated with. Sometimes, they’ve missed out on things because I’m sick with migraine. And I am left with no option but to accept help from friends when I am having a migraine week. This week, my friend Kristi picked up my child for me and took her to school for two days. She even thought to bring lunchbox food. She cooked us enough dinner to last two nights so that my mental and physical load could be reduced. In doing this with minimal dialogue, without fuss, without allowing me a chance to protest, she just totally removed the mental load of accepting help; she just did something that completely removes that added stress and mental load from me. When thinking and responding is literally causing you pain, and when you’re a caregiver for three people, that respite is the greatest gift a friend can give.
I live with chronic migraine, most likely because (a team of Very Expensive Neurologists have deduced) of the ginormous cyst that lives in my brain. Back in 2005 when they found it due to a wee spot of meningitis, the doctors taught me what an arachnoid cyst was, and informed me that I’m the proud owner of a quite large one – measuring over 5 centimetres at the time – which sits most precariously in the place where a left temporal lobe should be. What remains of my left temporal lobe is only about the size of a sultana. At a stretch, it’s the size of an expensive, juicy sultana. Not one of those nasty-arse Aldi ones.
Thankfully, I’ve managed to shrink the thing (as shown in my MRI scans) since then. I have been very scientific in this effort to shrink my brain cyst. The doctors are pleased. The period in which the cyst shrank by a whole centimetre has a positive correlation with increased days spent in my garden with my chickens. Therefore, shrinking unwanted brain growths can only be cured by whiling away many days in the garden with my chickens, and there is also supplementary evidence to support the practice of spending too much money in plant nurseries – especially ones where there are cafes.
Interestingly, the left temporal lobe is associated with sound processing, and if you ever worked with me in a professional setting, you’ll know that other more experienced musicians and producers often deferred to my advice on which chord to play or which note I was hearing. I have unusual aural skill (N.B. I do not have perfect pitch – I have good relative pitch) and I’ve never really attributed it to “talent”, as such, or even the formal training I received, even if that training did give me a whole lot of other benefits. It’s always felt too easy to hear musical notes and immediately understand the technical profile of what I was hearing. It felt like a “cheat”. That’s how easy it is for me to process sound. So, next time someone tells you that you “can’t” do something, remember that my brain neuroplasticitied its way to award-winning musical excellence when it’s supposedly meant to struggle with these things. I really have very little to do with my musical ability, if that makes sense. I’ve always felt like my brain was good at music by itself. Not very satisfying. And to be honest, a bit of a strange and unsettling headspace to work in each and every day. Maybe my own little collection of neurological differences were responsible for planting the seed of curiosity about neurology and psychology to begin with. How the fuck can my brain do something so well when it’s supposedly missing the bit that’s meant to do that? If you’ve never read about neuroplasticity, go ahead and have a look for an explainer on this one. It’s completely amazing.
I was intrigued by the term, “arachnoid”, to describe a membrane in the brain, until I learned that said membrane is quite like a spider’s web. After that, it was settled. The cyst would be named Peter Parker.
Peter Parker and I have had a love-hate relationship for the 17 years since I had meningitis, mystery seizures, blackouts and headaches which led to the diagnosis of chronic migraine (shoutout to that first amazing neurologist I had – Dr Marise Healy!). To this day, Peter Parker causes me untold anxiety due to the unpredictable nature of the symptoms, and this anxiety of course only exacerbates the symptoms. It’s a chicken-and-egg affair, but thankfully, spiders lay eggs.
In more pleasant news – before Peter Parker decided ruin my week, I had THE MOST GLORIOUS weekend. I spent two and a half days just doing exactly what I felt like doing. That’s usually gardening.
This is Simon. Simon is (at my best estimate) between thirteen and fourteen years old. He was given to me in 2010 by a young lady in the Southern Highlands, where I lived. He was to be rehomed by five o’clock that day, or the farmer who owned the property he lived on vowed to shoot him.
Simon was raised kinda rough. He was starved so that he’d hunt mice and rats around the farm. He was raised with four dogs, and had no idea how to be touched gently without anxiety and fear. He was rumbled by those tough farm puppies and treated in that very old-school way that people still often treat cats in the country… leave them to their own devices, don’t bother even desexing them, and make them work for their supper. Above all, never, ever show them affection and love.
The day this young lady delivered Simon to my house, he jumped up on top of the television (which was something you could do in those days) and growled at everyone. He growled at me, he growled at my little girl who was eight at the time (now twenty), and he growled at me. He didn’t trust anyone. He didn’t even understand what a cuddle was. He would bite and scratch and growl if I held him too long.
These days, he’s obsessed with coercing cuddles out of me in the sunshine. Saturday-Caturday is his favourite day, because that’s when the family tends to spend a lot of the day outdoors. He likes to listen to retro hits of the fifties and sixties, and he likes to get really dusty in a particular sunny flat spot in the garden. I like to watch him writhing around in his sun-warmed dusty patch. He relaxes me.
He spends the entire day with me, wherever I am outdoors. However, I cannot pat him incorrectly, lest I lose a hand. He still bites for fun, and jumps out from behind bushes – or his favourite hiding spot – behind the wheels of my car. He only ever jumps out at my 8 year old with his claws in, playfully grabbing her around the legs. I have no such privilege. I cop the claws square in the calf muscles.
Simon is all at once sweet and sinister. I adore him and loathe him.
The feeling is, I presume, mutual.
I hope you enjoyed my post-migraine rambling about my experience of migraines, and the introduction to my quite awful cat. I shall be resuming my studies this afternoon. I feel quite better now.
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