Those of us that struggle with this Invisible Chronic Illness called Migraine Disease have heard it all and then some. Not once or twice but over and over again like a warped record that you’d like to take and bash against the wall into a million pieces so you don’t have to hear it anymore! You’ve tried to explain it over and over again to loved ones, family and friends. But they don’t listen or they don’t care to or they just don’t get it. Some days you’re just so frustrated it makes you want to scream! But other days your just so battle worn and weary that not only is your body weary and worn out so too is your mind, and you just mentally say to yourself “whatever” and curl up in a fetus position and want to be left alone in silence. We have to just face it-until they experience one themselves they will never understand nor appreciate the pain and the whole body experience one goes through when an attack happens. I have had to unfortunately learn to function at a pain level 6 and will not medicate until I reach a level 7. I’m in quite a bit of pain at 6 and make myself put on a brave face and its taken years to get to this point, its taken meditation and prayer, but I can semi-function but I cannot be overloaded or overstressed.
I have in the past, replied to a few but not all comments (depending on who it is-if it’s family it’s gloves off) with some sarcastic dark humor and off the cuff comments because they don’t listen to me any other way so I figure what the heck. Knock them off guard and counter attack is the best method-deflection has saved me a few times. Once in a blue moon it has not. But it’s been my ally a time or two because it’s made the other person really stop and think and I do believe it’s made an occasional person stop to think how idiotic they are. Well, maybe once.
My pet peeves based on my personal experience:
My biggest one (and everyone’s) you don’t look that sick to which you’d give a tart reply of “oh well hold on a few seconds maybe if I hurl on your shoes maybe that will convince you then”
One that gets me riled is can’t you take an Excedrin for that and get on with it, to which I have replied from time to time “well I tried M&M’s too because they are just as effective-close but no cigar so I had to give them both up and go to the doctor for real help. Mars was not happy but they got over it since they got more customers to take my place and Excedrin didn’t miss me one bit”
I still hear from extended family and friends about a “cure” they hear about or that I should go to Mayo. Again I have learned, slowly, to stay calm and explain “There is NO cure for migraine disease-it is a neurological genetic disease that they can TRY to control with hand me down medications and Triptans to abort migraines from becoming full blown migraine attacks, but again there is NO cure. I hear this is a cure for idiocy, but alas that has failed time and time again (heavy sigh)”
Then the ones that like to judge just how sick you are by the look in your eyes by a number of how sick you really are to which you say “I just medicated earlier so you can’t judge that way” Or I have replied to a couple of people “I figured I better put on my best face so I could give the undertaker a vacation” Or better yet “If I really looked how I felt I’d scare the crap out of you or else I’d be a convincing extra in that new zombie flick that’s out now in the movie theatre”
But how about the ones that say If you get out of bed and get outside and do some yard work or mow the yard you’ll feel much better than lying in bed with an ice pack and the curtains closed to block the sun, to which you reply “Leave me now-I’m practicing to be a vampire for True Blood and your ruining my practice for daylight down-time you irritating mere mortal.”
Or how about what another Migraine AGAIN didn’t you just have one, to which you’d reply “Well, I’m sorry if my schedule and yours isn’t lining up. I’ll talk to my head when it lets me regain control and see when we can pencil you in for a tentative spot, subject to change since I have basically no control”
Or you’re in bed with your head packed in ice, heat pad on your neck, room totally dark, everything shut off, you just finished your abortive med with oxygen therapy and you get the comment “what have you done all day, the house needs cleaned” to which you reply “You just missed the toga party and I’m having so much fun here can’t you see”
And an oldie but goodie, are you going to get up and make supper OR what’s for supper I’m hungry, to which I’d reply “I have my bucket here on the side of the bed-would you like me to reheat it for you and add some veggies for a stew?”
Or yet another oldie but goodie, they email me or come to me and say here’s an article they read I should see to which I replied “That’s from a book I purchased in 2003, so that’s old news, it was a good book I read it a few times if you care to borrow it. Thanks all the same I’ve been researching migraine disease for 25 years and your info is old news so leave the researching to me please I know better what to look for since I’ve been at it for so long”
And still yet, I get all the time about supplements or meds to try to which I respond “Been there, done that, tried that-cannot use that-it interacts with my current meds but thank you all the same leave the research to me and my doctor-we know what’s best for me and what will and will not interact with my current regimen”
They all still rile and irritate me but I have learned to knock them off guard with sarcasm and deflection tactics. Since they won’t listen to reason they respond or change the subject or until they wake up and realize what’s going on, or when they are made to feel like an idiot or the brunt of a joke or that they made a mistake. That gives me a breather sometimes and gets them off my back which is my intention, which lessons the stress which we all know stress is not good for a migraineur especially when you’re in the throes of an attack. If you like any of these feel free to use them or expand on them. Or feel free to share some of yours with me.
If you do not suffer from Chronic Migraine Disease then do not waste your time nor mine by posting a reply to my post. It will not be replied to as it only shows ones ignorance as I cannot make it any clearer as to the fact I am speaking TO MIGRAINE sufferers and the impact the disease makes on THEIR lives!! If you don’t suffer Migraines you won’t get it so move on!
Or else just sit back with me sometimes with that dazed and bewildered look as you stare at those repeat offenders and wonder just what is really going on between those ears of theirs, besides a wind tunnel. I mean honestly!
DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.