mybeautifulmigraine

This following article is every word the truth. My job doesn’t pay…in fact, Marc and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures and treatments not covered by insurance, new supplements well meaning people swear by.
I work every hour, every minute, to the point of beyond exhaustion. There is no break, no vacation. No time off despite excellent behavior and yet – it’s not visable. Everyone I see thinks I’m a-ok as I pretend to be Normal. I even spend energy hiding it from my family. They have no idea how hard I work to appear so. And I want to be Normal. I dream of waking up one day – and all of this misery will just *poof* be over.
If you’ve ever struggled with pain so long and so severe, that you just prayed to die. You know what I mean.
It’s been a nine year string for me. And despite how I focus all my energy on being Well, the physical abuse and mental stress I did to my body while trying to “appear well,” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” on my job!
People don’t know what to do with Chronics. They don’t get it – unless they GET it. We appear lazy, whiners, unreliable, boring, insincere, anxious complainers. Blah Blah Blah. There’s no kicking CM, RA, etc and booting it out of your life. There’s no beating it. No remission. So…we are just … 1) boring and 2) annoying and 3) weird.
I think the only way to explain Chronic to a Normal is in analogies… Imagine having the flu everyday of your life…go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s ALL FLU. Then imagine having to climb Mt Everest with that Flu. Everyday. Mt Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to the doctors (where they give you the great news that we can MANAGE your illness, but there is no CURE. And the meds they want you to take bring side effects often worse than the illnesses themselves).
Freaks. Just Freaks. Circus Folk.
I’m good at my job. I’m great at my job. I hate my job. I hate how it robs our family. Just robs us every day with no shame or remorse.
Sometimes…sometimes, I am so done.

ARTICLE:
An All-Consuming Job
By Kerrie Smyres—June 23, 2016

ABOUT THE AUTHOR    VIEW ALL POSTS BY KERRIE SMYRES

My job is the first thing I think about each morning. My work factors into every decision I make, from what I eat to whether or not I have sex. It wakes me up multiple times most nights. I never get a break from it. I can’t leave my work at the office after an exhausting day, nor can I escape it by taking a vacation.
While most people think my job is writing and working with the company my husband and I started, those are dalliances compared to my real job. That all-consuming job? Chronic migraine. (My experience is with chronic migraine, but feeling like migraine is a full-time job isn’t limited to those of us with migraine that meet the diagnostic criteria for being chronic.)
When my migraine attacks were at their worst, I expended enormous amounts of physical and mental energy to keep myself going. Others may have thought I was just lying in bed, but I was using everything I had to be sure I’d wake up the next day. To anyone who finds this melodramatic, consider that the World Health Organization has found severe, continuous migraine to cause the same amount of disability as quadriplegia.
I’m doing better now, but I still work constantly so I can hold on to this improvement (or hopefully, increase it). I spend my time monitoring my diet hawkishly, avoiding triggers, researching other treatments, trying to exercise to build up my physical strength, seeking balance so I don’t set off another attack, processing the enormous amount of grief that comes from spending so many years disabled.
My job will never come with the outwardly visible accomplishments, social stature, and wealth that society equates with hard work. But I’ve put in enough effort to be a self-made trillionaire.

There are some sweet remedies for a very weary soul. I often describe my pain as the ocean waves eroding my strength, like waves on the sand of the shore. I lose more and more of myself with each wave…

But today, drinking in this amazing ocean… The sound of waves, the smell of salt, the sea birds, fine white sand everywhere and all over, the vibrant colors of an ocean that goes on and on, the slight sting and coolness of the refreshing saltwater, the warmth of the hot sun on all of my skin. There is a calming. My mind and my heart go very still … drinking in these strong ocean and beach sensations. I can focus my everything on my children…their laughter and their joy as they play together. I catch them when they’re alone and marveling at the newness. I see my daughter as she feels the sand…letting it slip thru her fingers, the fineness of it, the softness. She pats it, swirls it, pinches it, draws in it. I see my son standing on the shore, he continues to watch the waves roll in over his feet. He waits and watches, feeling the cool water and marveling as his feet sink further into the sand with every wave. He’s learning and enjoying the sensations.
This is when my soul is well. Even my head is not hurting today. My SI is another story. But my head is clear. My head is full of the now. Enjoying this precious, miraculous moment…that will never come again. It will pass. But it will be my moment to love and cherish forever.
We don’t have a lot of money. Raising four kids is expensive as hell and I want to give them decent clothes, nourishing food, the best education and opportunities we can afford. I was able to finagle this trip by convincing husband this could be our last family vacation…as Ken goes off to college this year. We drove to Florida, saving money. We booked a Home Away, saving money. My health is also so very expensive. Our insurance is decent and we save all year for the high deductible due at the new year. But so much is NOT covered: my Cefaly, my massages, some of my meds, my oils, my ice packs, my heaters, my trigger point rollers, my migraine glasses, some blood work, some procedures, my cleaning crew, my lost employment, etc and etc. It is expensive being ill. And my whole family pays. I pray the money for this trip shows up or at least doesn’t put us too far into debt. I don’t like to talk money but the obsession about it and the lack of it does consume me with guilt and shame. I hate not ot contributing. I hate not using my skills. I feel so worthless. 😞
But this was not supposed to be about money. It was supposed to be about this amazing moment I can cherish for the rest of my days.❤

My Loves…my “reasons” for breathing… literally the wind beneath my sorry-ass chronic wings…

I can feel some medicine at a little over the half hour mark.

I’ve written “end” notes before. How is this any different? I can’t see any point… …maybe hearing my child laugh? …seeing a sunset? …hearing a bit of music that touches my soul? …everything is dark to me now. So dark… and trapped in a box of pain. Pain without end. Soul-weary pain. It is my Despair. My old friend Despair. Come to sit and be with me. I know you, old friend. I know you.

How do you talk to someone with a chronic illness, like chronic migraines? What do you say?

First and foremost, I don’t have to talk about it ALWAYS… while it’s part of me, it’s not ALL of me, by any means! Sure, I’m a freaking expert by default on the disorder, but I am so much more! I love having fun with friends, talking about our mom jobs and children, my passion for my Younique biz and empowering women, traveling, learning new things, current events, movies, home projects, medical issues, family, and so much more!

Sometimes I feel down – discouraged about the neverending nature of my illness and sometimes I want to use my twisted humor to deal with it. And it’s sooo okay to laugh about it. I do a LOT of eye rolling and laughing. It is so therapeutic! Lol.

One comment I get a LOT from others: “I get migraines sometimes but they’re nothing as bad as yours.” This makes me sad; don’t ever play down your migraine disorder just becuz you’re episodic and not chronic! If you’re a migraineur, I view you as a fellow warrior, whether you’ve have one migraine every three months or you suffer 15 or more a month! I’m no different from you – we both have a neurological disorder that has no cure. I’d love to talk with you about your treatment… maybe there are some options available you haven’t heard of? And I’d been interested hearing how you cope. I’d love sharing with you, fellow warrior! Don’t downplay your migraines! Even one migraine EVER is one too many for any human to suffer. We deserve more research, we need more treatments, we need better medical care, we need less social and medical STIGMA, we need more understanding, we need more discussion and awareness, and we need a CURE.

Another comment I get from well-meaning peeps: “Are you still getting those migraines? I thought you were getting the botox?” or… “I saw you this morning and you looked fine!” Yeeeaaah. These are tough. First, as of 2016, there is NO CURE for migraine disorder. There are three types of treatments to help: 1) preventative, 2) abortive, and 3) rescue treatments. For Chronic Migraineurs, usually a combination of all three treatments are required to MANAGE your neurological disorder. So first and foremost, the word “chronic” means simply – it doesn’t go away, it doesn’t end or stop, but it can be MANAGED. So, yes, I get the Botox and yes, it helps and yes, as disappointing as the reality is, I still get the migraines. To the second question… darn this can be a tough one to explain. I can look “fine” even when I’m migraining. I am so used to pretending and pushing thru the symptoms just to get thru the day… it would be embarrassing to me to “look like I feel;” I don’t want to look like a freak. I already feel like one becuz of this nasty disorder. Also, there’s a good chance that when you saw me and I looked fine, I actually might have been FINE! The devious part about Chronic Migraines is they are sneaky and can be creepy or instantaneous. The nature of the disorder makes my nervous system as sensitive as a toddler with PMS. I can wake up “fine,” run a couple of errands and then – bam! – a change in temperature, a startling noise, a fluctuating hormone, or basically anything in regular life can trigger a migraine. And then – I’m cancelling on you becuz my little migraine monster is demanding my full attention. They are predictably unpredictable and sly ninjas  just waiting to ambush. Frustrating making plans with me? You betcha. While I am reliable, my health is not. And it never fails to disappoint me. I feel awful letting people down and I feel awful missing out.

I do hope some of my lengthy essay can end the awkwardness.😊 Wanna chat about it? You know I’m always up for discussion! Thanks for listening and peace and love be with you all! 💜
#MyBeautifulMigraine #MAM

It’s not very beautiful. 😞 #mybeautifulmigraine

“She paints her eyes as black as night now
Pulls those shades down tight
Yeah, she gives a smile when the pain come
The pain gonna make everything alright

Says she talks to angels
Says they all know her name
Oh yeah, she talks to angels
Says they call her out by her name”

I can see them there…but I cannot touch…