Once upon a time I was healthy and so happy. Then a Thai elephant named Alan, an unnamed mosquito and I spent quality time together in a jungle and wham bam ma’am: I have malaria, amebic dysentery, parasites and endless migraines.
On the bright side, those critters are a fabulous diet plan. I lost 33 pounds in 10 days, vomited blood for 11 months and kept vomiting up a super model a week since then. When my temperature hit 106 degrees and stayed there for ten days it turned on, so I’m told, the migraine genes.
I am my parents’ daughter (whatever Dad says), and both grandmothers, great grandmothers, and a grandfather all had debilitating migraines. So, from that day to this, all day and night, every day and night, I have SUFFERED (I’ve earned all caps) from multiple mind mangling migraines.
Imagine a hundred nail guns shooting spikes into your skull, a mallet with the force of a Mack truck slamming repeatedly into your head, an endless supply of needles blasting into your left eye, a vice grip on temples so powerful your skull feels two inches thick while at the same time a relentless force pushes your skull outward until you are positive it will blow apart.
After thirty years I’ve learned a few tricks of how to survive relentless unendurable daily pain. The person who says laughter is the best medicine is an idiot. When I go to the hospital with a collapsed lung, I want surgery and drugs, not knock-knock jokes. When I’m in big pain, I want science.
I know how to decorate the pit of despair and juggle 8,974 side effects. I know the do’s and don’ts of crisis pain management. I’ve learned that civilians (humans not living in chronic pain) and medical professionals are sometimes ignorant of the physical, emotional, economic, social and psychological facts of living in chronic pain.
I’ve heard it: I’d have no more migraines if I just take their personal God as my lord and saviour. My intelligence is causing my migraines. My lack of intelligence is causing my migraines. Obviously, in a past life I came up with the actuarial tables for the Spanish Inquisition.
I’ve had to learn more about the human body and mind and medicine than I ever wanted to know. I’ve given more stool, blood and urine samples than you’ve had hot breakfasts. To my horror I learned that almost without exception all the medications I’ve been given made my condition worse. On doctors’ orders I’ve taken more drugs than Keith Richards.
I’ve learned not be embarrassed or ashamed when I sob in public.
Chronic pain doesn’t carry the cachet of a life-threatening illness. It’s very hard to develop relationships when one needs some accommodation. God forbid help. It’s the year after year stuff that’s so hard (insert smirk here) on civilians.
Why don’t we speak up more? We’re all lying down in dark rooms wearing cats as earmuffs, fighting for our very survival and sometimes our sanity. We are pain warriors. Fighting every day and especially at night to survive. We deserve respect. Understanding. Compassion. Empathy. Not pity, or suspicion, or contempt or false humanity. I’ve still got dreams. Smaller dreams. To sleep, perchance to dream. Not to go too quietly into that good night... and to never take another pill.
This featured story is part of Pain BC's chronic pain awareness campaign for National Pain Awareness Week (NPAW). Find out more about the campaign here.