What Does Chronic Migraine "Look Like," Anyway?

Chronic migraine is defined as 15 or more pain/migraine symptom days per month, but for quite a few of us it progresses to much more–daily or 24/7 symptoms and suffering.
It’s also called an “invisible” disorder, meaning you can’t see it, which often leads to skeptical reactions from medical professionals, employers, coworkers, and sometimes even friends and family.
It’s a bit odd to me that so many disorders and diseases are referred to as invisible when their effects wreak such obvious havoc on our bodies and in our lives. I tend to believe that they can be visible…for those who wish to look past the surface.
Here are some of the things chronic daily migraine looks like to me.

It looks like fighting to prove you’re disabled to those who can’t see it.

It looks like cancelled plans for the umpteenth time.

It looks like friends who stop inviting you out, but who can’t or don’t come visit you.

It looks like days in bed in the dark when your family is in the living room watching TV, laughing, and talking.

It looks like a messy house, unwashed dishes, and sitting on the couch in pjs wishing you could clean it up but knowing you can’t.

It looks like days missing who you used to be and what you could once do without planning exhaustively for a bad episode.

It looks like a beautiful day outside with you looking out the window from your bed.

It looks like feeling worthless and alone.

It looks like unbrushed hair and no makeup, because no one is coming to see you or you can’t tolerate visitors and you can’t stand the pain long enough to get pretty (or passable) anyway.

It looks like missing time with your grandkids.

It looks like people who think or say “you can’t be THAT sick all the time” or “aren’t there treatments for that?” or “God won’t give you more than you can handle.”

It looks like prescription bottles and a medication schedule and side effects and treatments no one would volunteer for unless their disease was much worse.

It looks like suggestions to “cure” you that range from “have you tried cutting ____ out of your diet?” to “I hear this body piercing gets rid of migraines” to “you should exercise more” to “doesn’t sex get rid of headaches?”

It looks like being asked “you still have that?” after 5 years of telling people what “chronic” means.

It looks like feeling “okay enough” to do laundry OR do dishes, but not both and definitely nothing more.

It looks like people who say “but you LOOK great!” or “but you don’t LOOK sick!”

It looks like countless medical tests with inconclusive results because there is no test to prove the existence of migraine disorder…only ones that rule out other possible causes.

It looks like explaining for the thousandth time that migraine is a genetic neurological disorder that affects the entire body and NOT a headache.

It looks like rescheduling a doctor appointment because you’re too sick to drive.

It looks like people sniggering behind you about “What [drug/other speculation] you must be on” because you can’t walk straight courtesy of aura or vertigo or both.

It looks like disbelief when you list your symptoms, diagnosis, and pain level at the ER.

It looks like uninformed and under educated medical care unless you see a specialist.

It looks like inconsistent or rationed treatment because of the expense of medication and specialist visits.

It looks like a years on end long list of ineffective treatments you’ve tried and that have failed.

It looks like someone who had a perfect 4.0 GPA feeling dumbed down because she now has trouble finding the right words, remembering things, and making once-easy connections.

It looks like your specialist telling you very gently, “There’s not much to try beyond this, and these are the odds it will help…but even if it doesn’t I’m not giving up on you.”

It looks like depression, suicidal thoughts, and anxiety about the uncertainty of each day and the future.

It looks like new symptoms cropping up and surprising you unpleasantly.

It looks like your mother telling you that the birthday gift she’d like most would be you getting to have a good day with less pain.

It looks like your boyfriend feeling helpless because he’s a “fixer” and he can’t do anything for you but be there (or if you are a grumpy sick person on really bad days like me, leave you alone).

It also looks like your boyfriend learning about your disorder and patience and limits right along with you.

It looks like learning to live with a much-limited sex life.

It looks like finding new ways to define yourself and a new idea of self worth.

It looks like smiling in front of strangers or people you don’t want to worry as if the pain and other symptoms aren’t breaking you.

It looks like finding the beauty in small things.

It looks like learning to appreciate small accomplishments you never would have thought twice about otherwise.

It looks like bad days when you envy those who can afford to go to the doctor for checkups and preventive care while you are debating if you can afford to take your last abortive dose for the month…mid month.

It looks like a repeated cycle of the stages of grief in no particular order as you grapple with the old life you lost and acceptance of the life you didn’t choose.

It looks like learning to cherish the good moments and to hang on to them for all they’re worth as a buffer against the bad and unbearable days.

It looks like nothing to those on the outside looking in and everything to those living it.

It looks like me.

And it looks like him…and her…and millions of us struggling every day with something no one else can see.

Acceptance VS Giving Up -- A Big Difference

Acceptance.

It’s a dirty word.

The world tells us not to accept our limitations, not to accept no for an answer, that all things can be conquered and beaten if we push hard enough, and that those who overcome their limits are an inspiration to others.

The world is sometimes wrong.

Sometimes, limitations are what keeps us alive. Sometimes, taking no for an answer is necessary. Sometimes, there are things that can’t be conquered or beaten, but simply lived with. Sometimes, the inspiration we need isn’t the person who beats the odds, but the one who handles accepting them with grace… or who accepts it at all.

Disability and chronic illness can be all of those things, but acceptance is seen all too often as giving up.

It’s not.

After four years of living with chronic migraine disorder, four years of daily pain and a plethora of other neurological symptoms, and four years of trying find my limits and exceed them, I’m just now learning what I thought I already knew: that acceptance of my new normal and new reality is necessary to function as well as I can.

That it isn’t giving up — it’s what I need to keep fighting. If I expend all my energy trying to fight and overcome an incurable disorder, I’m wasting my precious time on something that is a pipe dream. I’m wasting my good days on something I’ll never attain instead of living for the good moments. I’m not able to make realistic judgments about my care and treatments if I am fighting my reality.

And worst of all, when I continually push myself past my limits, I’m not accomplishing anything except exacerbating my pain and other symptoms, which results in fewer good days or moments.

It’s not a one-time deal, it’s a continuous process. Over the years, I’ve developed new symptoms, some of them rather scary. And it’s normal to be scared or have trouble accepting these new things and new limits — and some days I will fail at it. Some days, all I’ll see is my limits, and some days, all I’ll find is sadness or anger at them.

Failing at it some days is not the end of the world, even when it feels like it.

Every day is a new chance and a new learning experience. I’m still learning ways to accept my new normal — counting the blessings I still have, using my experiences to reach out to others, realizing that acceptance is healthier than denial, and that it’s OK to admit I’m struggling.

I can still be happy on most days even if I’m not being a poster child for for trying to overcome my disorder.

The only thing I really need to overcome is my own preconceived ideas of the advocate/fighter/hero/example to others I feel I “should” be… and my expectations of myself are a lot higher (and sometimes less rational) than what others expect of me.

Acceptance is not easy, but it’s not a dirty word. Sometimes, it is the saving grace you need.

I will be OK, because I can accept my new normal, over and over again if need be, as hard as it may be.

And so will you.

( Originally published on Chronic Illness on The Mighty. See my author page and other published articles here. )

The Price of a Good Day

 (Photo- at the Texas Renaissance Festival with family.)

The saying "everything has a price" is seldom more relevant to me than after a "good" day--meaning a day I feel well enough or am medicated enough to do something fun or normal.
Even if the day or activity itself goes off without a hitch, it's still something that is beyond what my body is usually capable of, and much like a healthy person, there is a price to be paid for that. Unlike a healthy person, the cost is considerably higher for me in a multitude of ways.

I call it the Aftercrash.
Doctors call it the Let-down Effect  --"In the immediate aftermath of stressful times -- perhaps following an anxiety-producing project at work or a major family crisis -- when you finally have time to take a deep breath and unwind, that's when illness can unexpectedly strike. Just when you're letting down your hair, your ability to fight off illnesses may let you down.
"This effect has been associated with conditions such as upper respiratory infections, the flu, migraine headaches, dermatitis, arthritis pain, and depression," says Schoen, a psychologist and assistant clinical professor of medicine at UCLA."

Whatever you call it, it strikes with a vengeance when you often think the worst is past or that you've gotten off easy, and even good stress (yes, that's a thing) and excitement can bring on an episode. Chronic illness and chronic pain sufferers are very susceptible to the Aftercrash and the havoc it wreaks for anything from a small outing to a major event.

We all have our limits that our bodies say "okay, that's enough" to, even if we're in perfect health. Society praises those who excel beyond the limits and push themselves despite them, and we with chronic illnesses do this very regularly even though it's sometimes detrimental to us. We are the don't-quit poster children, it seems, trying to still do it all while smiling through the pain.

And while I believe acceptance and knowing our limits is very important--limits can keep us alive, after all--that's a subject for another post, because today I'm embracing the aftercrash.
Yes, you read that correctly. I'm celebrating it.

I'm celebrating the pain that is too much today even while I practice self care and recover, because it means I didn't just exist for a day, I LIVED, despite knowing it would cost me.

The world of chronic illness is frequently a balancing act spent weighing the consequences of doing something that means we may not be capable of something else. Even a shower is a planned activity for us that can sap us enough to make it our only activity of the day. And knowing these crashes are coming or likely and what may bring them on is an all-important key to navigating our lives.

Sometimes we let that knowledge that the aftercrash is coming prevent us from doing something we want to do...we let the fear of what's coming stop us from living in the now. And some days our illness just plain wins.
But some things, days, or even moments are worth it...because otherwise we wouldn't have the good memories to balance out the bad, unbearable days.

For those moments, we have lived without fear. We didn't let our illness keep us from the moments that matter.

And that is sometimes a price worth its weight in gold.