Living with a Chronic Condition

I’ve suffered from chronic migraines for almost seventeen years now.

I’ve tried multiple things to help me live with them.

Nothing has worked perfectly.

Let me explain what chronic migraines are. Let’s break it down.

Chronic = persisting for a long time, or constantly occurring

Migraine = a throbbing headache that typically affects one side of the head and often accompanied by nausea and disturbed vision

It’s not uncommon, this condition. Some statistics, based on Australia:

Clearly, I am not alone. But somehow, these statistics don’t comfort me. Because there isn’t really a cure. The more people suffering doesn’t mean we’re close to figuring out a way to be rid of migraines forever. And, the thing is, migraines are kind of isolating. They’re not fatal – at least mine haven’t proven to be yet – so people that don’t get migraines don’t really take them seriously, and there’s far worse things that can afflict a person, so nobody really gets it. They just say poor you, and that’s really all that they can say. So, it’s not something to fight through with people. Plus the only real way to ‘get rid of one‘ is to sleep the day/s away until it magically disappears. Because of this, my social life really suffers – even just sitting at home with my family is impossible, because when a migraine hits I become a pseudo-Dracula, shrinking away from the light like “it burnssssss”.

My migraines can be triggered by anything. A few years into this condition, I started compiling a list. Here’s what I’ve got so far:

  1. too much sun
  2. too much wind
  3. too much rain
  4. sitting close to an air conditioner
  5. sitting close to a heater
  6. going out with slightly damp hair
  7. sleeping with slightly damp hair
  8. coca cola
  9. red liquorice
  10. hard candy
  11. soft lollies
  12. driving for a long time
  13. getting too hot
  14. not drinking enough water
  15. sleep deprivation
  16. not getting enough sleep
  17. looking at a computer screen for too long
  18. stress
  19. anxiety
  20. loud music
  21. bright lights
  22. standing for too long
  23. neck strain
  24. shoulder pain
  25. sleeping in an uncomfortable position*

Ok, I’ll stop. I can think of more. But you get the idea.

*I write ‘uncomfortable position’ but lately I’ve been waking up with a headache no matter how I sleep, so that’s fun.

Like I said before, there are far worse things one can be afflicted with, and I understand that. When you look up a list of chronic conditions, chronic migraines barely registers. And I know I’m lucky to have the rest of my health, but that only makes it slightly easier to live with my migraines. It can really ruin my whole day when I can feel its presence from the moment I open my eyes.

It’s like the Force, all around us, ever present. Except, with the Force you have to try and connect with it. My migraines announce themselves loud and proud. They’re not hiding at all. I’ve tried physiotherapy, multiple times. That helps a little, only if I go every few weeks. It’s not a cure. I’ve tried migraine tablets. Not only did they barely help; they also made me hungry enough to eat a horse every second of the day. Had to chuck them out. I’ve had CT scans, MRIs, sleep tests, therapy, every kind of aspirin on the market – everything and anything. Nothing worked or helped explain the problem.

except that one time when my brother had surgery and brought home morphine tablets and I took one and was out cold for five hours and woke up with no sign of the migraine at all it was like magic

Until recently. About two months ago, maybe. There was a box of Panadol Extra in our medicine cabinet. I don’t know where it came from. But I had a headache, found that box, and thought why the hell not? and swallowed two tablets. I didn’t expect much. So when I felt my migraine dissipating, I thought I was dreaming.

But I wasn’t. It actually worked. And for the past few months, it’s still been working. I found the perfect new solution – pairing Panadol Extra with black tea and honey. I was still waking up with throbbing pains down the side of my head, but I’d drink some tea, swallow some Extra, and I’d be good to go!

It was like a miracle. Honestly, I wanted to cry. Finally, after seventeen years, had I actually found a cure? Should I call SBS? Tell the world? Share my story with the world? Would I become famous? Known worldwide? Would chronic migraine sufferers the world over write odes to me and paint my likeness to hang in the Gallery of Modern Wonders?

Short answer… no.

Unfortunately, it was all too good to be true. Because this past week, I’ve been trying my newest solution of tea and Extra and it hasn’t been doing anything at all.

It’s lost all its power.

At first, I didn’t understand it. Why had it stopped working? Was I actually dreaming for two months? Stuck in some sort of delusional stupor, so desperate to be rid of my ailment that I’d lost my grip on my mind completely?

No. The answer is far simpler. I think my brain’s just become immune to my new solution. When I first introduced the Panadol Extra and the tea, my brain didn’t understand what was happening. It had never met this Panadol Extra. Who is this Panadol you speak of? it whispered. And for weeks it kept meeting my solution, and trying to work out what it was, who it was, why this solution was coming into its home. It was working overtime, trying to work it out.

And, at last, it did.

My brain, after weeks of working at it, is finally immune to my new solution.

And so, the chronic migraines live on.

hooray.

Migraines are really no fun. Mine are usually accompanied by nausea, vomiting, dizziness, light sensitivity, decreased/no appetite, fatigue/exhaustion, sore throat, joint pain, irritability, change in mood overall. And I think that’s the main problem. My migraines really affect my mood. Because I’m a serial planner. I like to plan my days and get things done in them. And when I wake up with a pounding head, it almost always means my plans will be thrown out the window. And when that happens most of the week, it becomes really demotivating and depressing. It’s really hard to find motivation to keep going when, each time I’m on a roll with something, it gets derailed by a migraine.

Exercise helped a little, but that’s really its own kettle of fish. I’ve signed up with four different gyms, and none of them worked out. The last gym I tried, last year, had this dance class that I did. It was great in the moment, but they had an air conditioner blasting and the next day, I was paralysed with the worst migraine I’d had in a while. So my relationship with exercise is tentative and I’m wary of the things I try because, more often than not, I end up with a throbbing head, tension everywhere, and depressed disposition.

I write all this not for any particular reason. I woke up today with you guessed it another migraine, and it didn’t go away. And so, I spent the whole day thinking about it, and so here I am telling you about it. I think I’d like everyone to understand that old adage – that everyone is fighting invisible battles.

I know it pertains mostly to mental illnesses, or struggles people have inside their home, or in their relationships – things people don’t talk about. But I think it also pertains to invisible disabilities and chronic conditions that don’t have symptoms you can see. You couldn’t tell if I had a migraine. There’s no way of knowing, unless I tell you though my family can tell.

I suppose it’s just another way of imploring you to not judge anyone too harshly. Maybe someone snaps at you, and it’s unusual. Maybe someone else avoids you or doesn’t laugh at your joke or doesn’t say hello or share their cake with you. I know it’s kind of human nature to get offended, feel like this person hates you now and you’re going to be sworn enemies forever. But, if you just take a breath, you’ll realise that sometimes, it isn’t about you.

Sometimes that person’s mind is running a million miles an hour, with thoughts that you would never even imagine. Or maybe they’re burnt out because they’ve woken up every day feeling pain in some part of their body, or they’re stressed because they’ve got another doctor’s appointment coming up in which they know the doctor is going to tell them we still don’t know what’s wrong with you.

Just cut everybody some slack. And know that literally everyone, no matter their race, religion, creed, socio-economic background – everyone has problems.

6 thoughts on “Living with a Chronic Condition

  1. I’m prone to migraines too, and tend to get “auras” when I have them so I can’t even see clearly to read. I know it’s different for everyone, but maybe nitrates has something to do with yours too? I found out a lot of foods have them, and when I changed my diet (stopped eating any), my headaches cleared up. Processed deli meats, aged cheeses, pickles, plums, chocolate (that was the most horrible to stay away from), oranges, even preservatives in store-bought breads can trigger headaches for me.
    I know it stinks. I’d hate to have migraines as often as you do. Hope it helps. 🙂

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      1. Something like that. Some foods trigger me more than others–store bought bread, bologna, and hot dogs, for example–and those had to go right away. I can still eat a few of them (like chocolate) as long as I don’t overdo it. And a lot of brands make non-nitrate versions of processed foods which are perfectly safe.

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