The Migraine Pose Saga Continues – Trivializing Migraine

True migraine poses
#truemigrainepose pics

So…this migraine pose thing…you’ve maybe seen my posts on Instagram about it…or my tweets…or my last blog post on it.

Well, this happened…you know how much I love migraine.com, right? (Not sure anyone could miss that lol). But one particular writer, Kerrie Smyres, has been my migraine advocate idol since before I started doing the advocacy thing way back when – she wrote about the spectrum of migraine and how we shouldn’t judge by our own what a “real migraine” is, which was not only the first article I read by her but also very much set the tone of my own advocacy and wanting to make sure I include episodic migraineurs.

So she wrote this piece, and asked if I would mind contributing one of my pics of me in migraine mode. (Would i mind? Lol, if i could have turned cartwheels, I’d have been in the yard doing them lol)…and I’m in here grouped in with migraine.com advocates’ “true migraine poses.”

https://migraine.com/living-migraine/instagram-migraine-pose-fight-back-against-trivialization/

It may be a funny thing to be excited about, having the least flattering pic of myself on here, but I’m in a write by my migraine hero.

Feels like one of those ‘come full circle’ moments.

AND this article has some great info on how to fight back against the stigmatization of migraine.

Stay in the fight, migraineurs. We’ve had articles published about the backlash we’ve raised, but it isn’t over – others like Cosmopolitan and MamaMia have published the migraine pose article as well; it’s spreading.

If offending their key demographic is no deterrent, there really should be a consequence of some kind, so let’s keep taking the fight to them.

A few articles detailing the backlash:

“Migraines are not just headaches, and sufferers don’t tend to sit around looking glam with their hands resting on their heads.”

People who actually suffer from migraines are fighting back against the migraine pose trend

http://www.dailymail.co.uk/femail/article-5905697/Outraged-sufferers-accuse-migraine-pose-trend-disease-shaming-viral-Twitter-backlash.gym

https://www.news.com.au/lifestyle/beauty/face-body/the-migraine-pose-taking-over-instagram-getting-backlash-on-social-media/news-story/de4af78c8e675c0a1ddcb2723dbc33ba

https://www.today.com/style/instagram-migraine-pose-causing-backlash-t133158

And I’m not a fan of FOX news, but we’ve even gotten their notice:

http://www.foxnews.com/lifestyle/2018/07/11/migraine-pose-getting-backlash-on-social-media.html

Be well, or as well as you can,

AND KEEP FIGHTING BACK.

– Selena

Advertisements

When a Magazine Adds to the Stigma of an Illness

IMG_20180626_190022_532.jpg

Alerted by a post from migraine advocate Kerrie Smyres about the so-called “migraine pose” (as called by an Elle magazine makeup artist), I just messaged the following to their Facebook page:

“Re: “migraine pose”

Thanks for adding to the stigma and appearing to almost make fun of a horribly painful and debilitating condition.

“The story behind the “migraine pose”: “We at ELLE.com love a weird Instagram pose, and the latest one populating on our feeds is giving everyone a headache. Well, it’s making everyone deliberately look like they have a headache. And it’s damn flattering.

Migraine Pose, coined by makeup artist Nam Vo, involves posing with one or two hands pulling your face up by your temples as if you had a, well, migraine. There’s a reason it’s trending: The pose tightens the face, makes your cheekbones look more prominent, and lifts the brows. It’s a temporary facelift for the ‘gram.

‘I love it because the beauty of your hands frame the face and give it more structure. I always make my models pose this way,’ Vo told me, ‘It’s also a great time to show off your manicure.’” https://www.elle.com/…/what-is-migraine-pose-instagram/

What follows are photos of true migraine poses, from someone living with chronic daily migraine.”

Link to Kerrie’s post calling on those with migraine to post photos of themselves during a migraine attack with the hashtag #truemigrainepose to call out ELLE magazine: https://m.facebook.com/story.php?story_fbid=10156463229200789&id=601600788

Link to ELLE’S Facebook page: https://www.facebook.com/ellemagazine/

Let’s not let this go. Migraine is a terrible and debilitating disease affecting millions, and is extremely stigmatized as it is.

Migraine pose, my arse. ELLE magazine you have some education and following up to do.

Be well, or as well as you can.

– Selena

When Chronic Illness Kills A Relationship

The end
15 years…gone.

 

One of the most painful things I can think of is the end of a relationship that was once full of love and happiness. It feels even worse that the cause of death here was my chronic illness.

Or rather, his inability to deal with my illness once things got tougher.

What is it like to become single while sick and disabled after 15 years, most of which were happy and healthy and in a happy and healthy relationship?

It’s like the bottom has fallen out of your world.

It’s like everything you knew, trusted, and believed in was yanked from under you and you don’t understand why suddenly you’re not enough any more.

It’s like seeing it coming but trying to fix it when there’s nothing you can do.

You can’t get well and stop the stress you’re both under financially and emotionally. You can’t break through your partner’s belief that any health issue can be conquered or fixed if you keep going like always. You can’t convince them your invisible, incurable chronic illness imposes real physical limits or that you’re at or past them when you look like nothing is wrong with you. You can’t explain why your grief over everything changing won’t heal when they won’t accept that you won’t get better.

It feels like being alone before you ever realize that you really are, because you can’t put your finger on the real issue…which is that as much as you may love each other, your partner can’t handle your illness and being your sole support, because they feel they can’t communicate their stress to you.

It feels like being punished for something you can’t control, and communication between you breaking down until it’s too late.

It feels like resentment, both directed at you and that you have for being resented.

It feels like trying to tell your partner that you understand…but you don’t. You may understand why your illness caused stress, but you will never understand why they could allow it to make them give up on you – on you together.

It feels like trying to tell your adult children without making them feel like they have to choose a “side.”

It conversely and perhaps irrationally feels like hurt because some of your children don’t take your side automatically, even though you’re trying to avoid making them feel like they should and you know it’s wrong.

It feels like not wanting to burden your family and friends, but not being able to do it alone either physically or financially.

It feels like being lost in a world you don’t know the rules to, if any exist.

It feels like fear and uncertainty are your new best friends who won’t leave you even for a moment.

It feels like longing for things back, even if they weren’t good for you.

It feels like heartbreak.

It feels like the end.

It feels like crying every night and having more flares because your stress affects your physical symptomatic levels.

It feels like being unable to explain that without others assuming it’s stress making you ill rather than exacerbating your existing illness.

It feels like feeling unlovable because of your illness.

It feels like every guilty thought you’ve had about how your illness is hurting your family is true in the worst possible way.

It feels like being lost.

It feels like strong moments when you think you did the right and necessary thing for you.

It feels like the rest of your moments being spent wondering if you did the right thing for you.

It feels like wishing they’d want you back.

It feels like wanting them to want you back so YOU can be the one to walk away from them.

It feels like wishing you’d never met if this is how it ends.

It feels like you’re a yo-yo ride of emotions.

It feels like having to lose the pets you raised and adore because you can’t take them to your new place…because you don’t have one.

It feels like as much a betrayal and trust-breaker as infidelity.

It feels like telling yourself not to even get interested in anyone because you can’t stand the reaction of mere aquaintances when you drop the Chronic Illness Bomb, much less that of someone you really like.

It feels like losing hope of a remotely normal life.

It feels like finding a new version of you as you discover who you are without them.

It feels more like,moving away than moving on or forward.

If it gets better you can’t see it yet, and in that, it feels like any breakup.

If it gets better, I’ll let you know.

– Selena

IMG_20180603_183554

Don’t Tell Me How To Feel About My Trauma

I think I can hate the experiences just fine. Acknowledging that they shaped me for better or worse is something altogether different in my opinion.

Being abused, molested, sexually assaulted, losing my best friend at 9 to an abusive foster mother who beat her to death, losing my niece, having a chronic illness, raising kids with mental health issues – I hate those things and that they ever touched me and those I love.
I hate them with a passion.

Did they shape me?

Yes.

But so did the neighbors who tried to help an abused kid, the Spanish and world geography teacher who gave a shy, picked on teenager a safe space in his classroom during lunch and tried to draw me out on the home abuse he suspected, the 6th grade science teacher who would later protect me from an abusive boyfriend in the mall, the supervisor at work who helped me when my ex threatened to kidnap my kid, the unconditional love and support of my mom and sisters, and the support of my chronic illness family.

Those people are the ones who turned my hurts into strengths, not the events themselves.

They are what made me and helped me make myself.

Don’t tell me how to feel about my trauma.

And don’t let anyone tell you how you feel about yours is wrong.

Be well, or as well as you can,

Selena

An Open Letter About Suicidality

Suicidality
My sisters and I a few years ago.

****THIS POST MAY BE TRIGGERING IF YOU HAVE ATTEMPTED SUICIDE, ARE A SUICIDE SURVIVOR, OR HAVE DEPRESSION/ SUICIDAL THOUGHTS****

When I was 19, I took 60 sleeping pills. I made a quick stop at a friend’s bridal shower, then went home to die.

I didn’t. Not because I got scared…but because my then bf was horrified at the thought he might be blamed and called 911, because I was pretty far out by then.

The EMTs that night were the true heroes who gave their all to keep me here. I remember them the most through the fog of lights and noise, especially the woman who talked to me the whole time I faded in and out. “Stay with me! Come on, sweetie, just stay!”

I wanted to tell her no. I wanted to tell her that even when I was breathing, I wasn’t alive; that this life and each breath I took was loaded with too much pain to stay.

But I couldn’t. Her face was the last thing I remember.

I woke up in ICU. It was a day and a half later. I was confused. There were tubes everywhere. I wanted to talk, but one was in my throat.

The first thing that registered was my little sisters, sitting across the room with tear tracks down their faces. They were the first to realize I was awake, and Daphne jumped up, dumping Diana on the floor.

Then my mom, bawling so hard it hurt to look at her…at any of them.
My father was there. I tried very hard to ignore him. He was one reason I didn’t want to be alive. He was trying to act happy…but I could see the anger underneath. He wasn’t angry so much that I’d scared them, but that I’d embarrassed him by this and by what secrets I might tell.
He was relieved that I didn’t. I didn’t mention him at all, I think, and that made his act easier for him.

My attention wasn’t for him anyway.

I don’t remember what was said. I remember my sore, scratchy throat. I remember the nurse who removed the tube telling me it was there because I’d fought them getting the charcoal down, and that if I wouldn’t fight more, she’d leave it out. I had no intent of agreeing, but I did anyway.

I remember the fear and hurt on my sisters’ faces, and the relief that I was alive. I remember the way it hurt more than anything I’d ever felt to see that.

I remember us all crying. I remember wishing I hadn’t woken up or survived. That wasn’t in my plans.
I remember telling them I was sorry, and I was. Sorry I’d hurt them. Sorry I’d lived.

See, the biggest, most awful, scary, ugly truth about a suicide attempt is that sometimes (often) we aren’t glad we survived.
Sometimes not at first, and maybe for some, I suspect not ever.
And I was not at first.

More than anything, though, I was scared to try again. To not succeed again and to see that look in my sisters’ faces that still haunted them for a while when they didn’t realize it….that would be unbearable. To see that pain in my mom’s eyes again…
Those things haunted me and followed me like ghosts as I slowly learned to live.

I promised myself I would never, ever be the cause of those things again.

For 29 years, I’ve kept that promise.

It hasn’t always been easy, though. You’d think it was, right?

And that’s the other big scary truth about suicide attempts.
People who attempt may be (or become) glad we survived. Sometimes it creeps up on us slowly, like it did me, and we realize one day that we are actually okay…maybe happy…maybe grateful…with being alive.
Probably some are immediately grateful.

But we will almost certainly struggle with depression and suicidal thoughts again. We are at greater risk of dying by suicide, sometimes years later.
We will very likely need help, be it counseling, medication for depression, or both.

I won’t lie.
I won’t tell you it’s easy.
I won’t tell you I’ve never struggled or don’t sometimes still struggle.
I won’t tell you it will get better – sometimes it doesn’t. Sometimes we don’t get a happily ever after. Sometimes it isn’t a ‘temporary problem’ that will resolve itself.

I will tell you that you’ll never know if you don’t hang on.
I will tell you that it can be infinitely worth it.
I will tell you that each day you win, you are braver than you know, struggle or not.

I will ask you this: Please stay with me.

I wish I could tell that EMT thank you and that I’d pass on her plea.

– Selena

First Drug For Chronic Migraine Approved in US

#DownTheRabbitHole #migraine #Chronicillness #ChronicMigraine #CGRP #migrainenews

http://www.easttexasmatters.com/news/us-approves-1st-drug-developed-to-prevent-chronic-migraines/1185927462

Sigh. I’ve been remiss on posting about this because I don’t want my personal feelings about it to dampen hopes.

Personally, the estimated reduction doesn’t sound any different than botox promotions…and what they promote is always the more optimistic result.

No thanks. I prefer to know my realistic probabilities as being daily chronic for so long (yeah, the length of constant pain does reduce the probability of improvement, sorry to say).
No offense intended to anyone who isn’t daily – I know it’s just as disruptive and plain miserable when you have distinct separate attacks with days between or whatever your particular migraine hell is.

I’m just saying I wish there were more result ranges mentioned up front. Because quite frankly, sometimes that tiny improvement isn’t close to worth the price tag or side effects.

I do know one person who was actually in the trials and it DID dramatically help her pain.

BUT.

MIGRAINE IS NOT PAIN.
IT’S A GENETIC NEUROLOGICAL DISORDER AND PAIN IS ONLY A POSSIBLE SYMPTOM.

Though it DID help her pain, she learned something surprising that I did while on botox – the other symptoms we don’t usually think about or focus on so much still exist and still are disabling.

This is not an abortive – it will not stop an attack. And as a preventive, it may not be worth it for people like me.

One more side note from a post by a friend:
“In one study, patients given Aimovig saw their migraine days cut from eight to four a month, on average. Those who got dummy shots had a reduction of two. Each patient group had similar minor side effects, mostly colds and respiratory infections.”
I don’t know about you guys, but this makes me a bit leery. Having fibro, my colds last longer and can get really bad. I realize it’s just a side effect, but it makes me nervous and being sick to have less migraines isn’t appealing to me.”

Comorbidities, anyone? Was this not considered at all? If so, that is downright criminal in its own right, because the number of people with comorbid conditions is incredible.
There are very few I know with zero comorbidities.

And that’s not even getting into price.

I’ve been an advocate too long to find something that doesn’t treat the entire disease exciting, I suppose, because I’m too aware that pain is NOT the only reason many are disabled by migraine.

My main hope for this? That migraineurs, doctors, and researchers finally get past migraine = headache because of this.
Until then we will NEVER have attempts at a more complete solution or be taken as seriously as we should.

– Selena

It’s My Party And I’ll Cry If I Want To

 

 

On April 24th, I turned 48 (almost half a century *gasp*) to very little fanfare.

Actually…to no fanfare. Fanfare is too loud, I was too nauseous for cake, and my Migremlins were screaming enough, thanks.

Sure, my family texted (proof that they know or I’ve drilled into them that phone calls hurt) birthday wishes. And Facebook friends galore posted well-wishes also…but here at home…it was forgotten. And that hurt.

I have chronic illnesses, not a lack of emotion.

So if I want to cry over my nonParty on my Unbirthday, I think I get a free pass to.

Big-Ol-Pity-Party-Free-Pass.png

And like the girl said, “You would cry too, if it happened to you.”

(Also because my feelings are valid and matter, no matter who says otherwise.)

Be well, or as well as you can,

Selena

The Invisible Me

Depression
Depression and chronic illness/pain go hand in hand. Chronic back pain and chronic migraine are found to be highly correlated with significantly increased risk of suicide. But depression on its own is certainly no joke. It can be all-consuming and is accompanied by increased risk of suicide and other mental health issues.

How often have you tried to stay strong and appear like you’re handling things…while falling apart inside or when you’re alone and no one can see?

Depression loves to use our insecurities and fears against us, to whisper in our ear that no one cares or that we should be able to “get over it” or through it like anyone else.

It makes us believe we’re alone, even though millions of others like us are going through the struggle as well.

For National Poetry Month, I’m posting some of my poetry related to chronic illnesses/pain/migraine, domestic violence, and mental health.

Poetry has been an outlet/therapy/love for me for as long as I can remember, anything that deeply affected me emotionally has always been a part of that, but chronic illness and pain – physical suffering – affect our emotions and mental state much more than people not living with them realize.

These aren’t the only posts I’ll be making, but I hope that durimg this month of sharing, there’s something in poetic form you can relate to as well.

Be well, or as well as you can,

Selena

Never Forget, You Are A Warrior.

Chronic illness warriors
We often don’t feel like it, but surviving every day with a chronic illness, chronic pain, and/or a mental illness makes us warriors…even if all we did was survive. ❤

For National Poetry Month, I’ll be posting some of my poetry related to chronic illnesses/pain/migraine, domestic violence, and mental health.

Poetry has been an outlet/therapy/love for me for as long as I can remember, anything that deeply affected me emotionally has always been a part of that, but chronic illness and pain – physical suffering – affect our emotions and mental state much more than people not living with them realize.

I hope that durimg this month of sharing, there’s something you can relate to.

Be well, or as well as you can,

Selena

“Feelings” Are Just As Miserable (And Important) As Physical Symptoms

Chronic illness mental health
Chronic illness feelings suck…then add some mental illness feelings and *BOOM* you’ve got a combined mess.

No, I can’t “just think positive” or change how I feel…and I don’t have to.

Neither do you.

Feelings themselves aren’t inherently good or bad–they just ARE. And they’re normal, even the ‘negative’ ones. Even the ones that aren’t quite rational.

It’s what you do with them that matters.

People are uncomfortable with negative emotions. We don’t like seeing people we care about struggle or suffer; we’re full of nice sounding platitudes intended to bring comfort. The trouble is, we don’t always stop to think about whether we’re trying to comfort or help them feel better for us or for them.

If your offered comfort, help, or advice is given or urged upon someone because it hurts you to see them hurt or because you are uncomfortable with negative or strong emotional (and/or physical) suffering–it isn’t for their sake, whether you believe it will help or not.

Your intentions may be the best and the kindest; I honestly believe most people’s are. And in the moment, most of us will smile or say thank you for caring, and will try to protect you and ourselves by not voicing any emotional struggle again. We will put on the appearance of coping as well as we can and cry our tears or vent our anger into our pillows instead so we aren’t imposing or having to feel your discomfort atop our own.

And the more people we get the message from that our feelings are somehow wrong or inappropriate, the more we hold them back or try to bury them.

Yes, positivity has its place, and it does often help to a degree (big or small depends on the person and situation), but it isn’t a fix-all…and it won’t eradicate other feelings. Nor will burying them like rotting garbage.

All it does is make them feel more wrong, and more like there’s something wrong with us because we can’t seem to get rid of the stench.

Some things, despite our best intentions, have to be borne or traveled through. There’s no way around them, and they can’t be buried deep enough–we can always smell them even when you can’t. They exist regardless. And they can be part of an illness (mental or physical), partner to it, or become one of their own.

They can start to fester like an infected wound that slapping a bandaid over won’t cure; they have to be voiced to be lanced, and sometimes that’s all it takes to start the healing.

Others are more difficult, and some never completely heal–they need regular maintenance and treatment and may flare up again. These are usually the ones that can be the most difficult and the most uncomfortable for us and others to look at and hear about. They’re often a symptom of a larger problem or the result of a situation, and not dealing with them in a healthy way can impede or halt our progress and well-being.

But like any problem or illness, you’ve got to be aware of what needs treated, and every symptom matters. Even the ones we don’t talk about. Especially those.

We need to stop being afraid to tell each other it’s okay to feel, and to listening to how others feel even when it makes us unsure what to say or do, no matter how we feel about it.

It’s okay to not know how to react or what to say, and IT’S OKAY TO TELL SOMEONE YOU DON’T KNOW WHAT TO SAY OR HOW TO REACT. Most of us would 100% rather hear that than have our feelings dismissed or feel invalidated by the response of a pithy platitude.

In the end, it’s not always about who REALLY gets it, but about the fact someone tried or is willing to sit in that painful place with us without trying to fix or silence it.

Be well, or as well as you can,

Selena