The Insanity-Inducing Reality of living with Chronic Migraines from Hell.
Feb 3, 2019 at 11:00pm PST
“Finally, among the drawbacks of illness as matter for literature there is the poverty of the language. English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare, Donne, Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. There is nothing ready made for him.” ~ Virginia Woolf
~ My journal’s most common words are pain, brain, migraine, and insane.
I can’t tell you the amount of times I have read Virginia Woolf’s essay “ On Being Ill . “
It offers no cure for the sufferer but an understanding. Which means more than anything on the days you feel so low and alone.
Migraines feel like your mind is so fragile it is made of glass and may shatter at any moment.
Music, even a small amount of bass in another room, can feel like little bombs on your pillow. Boom boom boom. A drill going down the road can smash your thoughts into crushed biscuits. Someone munching an apple on the train can feel as though they are taking a bite out of your brain. A supermarket shop or a mall can quickly descend into a dark hall of hell.
Any noise or sound stimulation can trigger an overwhelming episode . Just the grinding of a shopping cart’s squeaky wheels can feel like a machete slicing through the bones of your skull.
It becomes a rush for home. You want nothing but silence.
Sleep is heaven for the migraine sufferer, but I often dream of being shot at point-blank range, I cower for cover with my hands protecting my head, wishing I was dead.
I imagine this is my subconscious trying to come up with a solution for the agony.
For the past six years, I have suffered with serious, debilitating chronic migraines . And I have tried everything.
I was like a little windup bird, permanently worried and twisted. Hopping all over the place, going nowhere. Only crazy. Constantly looking up online articles and cures. I was spending all I had on therapists who might fix this, and I was in and out of the doctor’s revolving doors, taking dangerous amounts of drugs just to get through the day.
I have taken codeine, sumatriptan, nortriptyline, amitriptyline, and, eventually, n itrous oxide and m orphine in the emergency room.
Until one day, I realised that all the painkillers were actually killing me. Each one I tried would give me hope for a few weeks, but my body would adjust and adapt and the pain would push back. I would end up even more depressed and stressed than before.
Of course it is natural to search for healing when you hurt, but my mind-bending constant mission became my cage and my prison.
Eventually, what worked the most was a cceptance. There is no miracle drug. But I have found some little mini-cures: A few leaves off the feverfew plant growing in my garden. Peppermint oil on my temples. A few drops of lavender on my palms to inhale. One small, strong cup of black coffee.
And if all else fails, I have c lonazepam for emergencies. This is an anxiety drug, and the only one I have on hand. You don’t need much, but it can help get me from A to B (bed).
Buddha said, “Pain is inevitable—suffering is optional.”
This was a hard one to get my head around, but I have slowly learned that I can be in pain without the world falling down. It still hurts like hell, but with self-care and self-awareness I can get through it. Before I would panic. “I’ll lose my job, I’ll lose my house, I’ll lose my son!” But t hese things all happened—and I am still here.
At a doctors’s conference recently, one doctor said to me, “ Distraction is your best tool.”
If I can manage it, I can walk out on the porch and sit still for a little while.
I might hear a bird call, watch the breeze in the trees, and feel the sun on my shoulders. Noticing the beauty is a hard task when you are in extreme pain, but it is like the blue sky above the rain. A few minutes outside can change my perspective. Along with spending time outside, I’ve made a few other lifestyle changes that have helped me reduce and manage my migraines:
Food My diet is now free from gluten, dairy, and most grains. I found that having a more balanced regime of good fats, leafy greens, seeds, and nuts helps immensely. Having fat versus sugar as body fuel slows me down and keeps me out of fight-or-flight.
Swimming There is no pain underwater. This lightness is a feeling like no other as a migraine sufferer.
Boundaries Setting boundaries is also a huge deal now. And it hurts some people.
I was always the hostess. But until you experience any kind of regular, long-term chronic pain, it is very hard to understand. It is hard to plan going away, as it is having guests to stay. I never know when a migraine will strike or how long it will last (sometimes three or four days in a row!).
In a recent article in North and South Magazine , the most detailed and enlightening piece of writing on migraines I have ever read, journalist and migraineur Lydia Monin quotes Dr. John Simcock (the recently retired medical advisor to the Neurological Foundation of New Zealand). He states, “People who haven’t had migraine don’t appreciate that it’s not just a pain in the head. A person with a heart attack thinks they are going to die, and a person with a bad migraine wants to die.”
Gratitude Feeling grateful works like nothing else. I have a little list that reminds me that I can still walk, talk, see, hear, read, write, and dance (sometimes).
I gave up on finding a cure and began simple endurance, energy work, and self-care. I do hearts for the good days instead of crosses for the bad ones. And I stopped feeling guilty for the amount of time I spent on my own.
On the subject of pain in her essay, Virginia Woolf also says, “ Here we go alone, and like it better so.”
Some days, I simply have to close the curtains and s urrender to the fact that sleep sometimes really is the only relief. And there will be better days.
And even though those are my four most common journal words, “beautiful” always comes first.