Migraine Can Be Deadly. (Yes, Really.)

On the last day of Mental Health Awareness Month, I'd like to highlight the importance of mental health in conjunction with chronic pain/ illness/migraine.

I can say that having found the migraine community shortly after this young woman's death, I was profoundly and deeply affected by Melissa's story.
Having progressed to daily chronic myself a relatively short time before, I was struggling to deal with the pain, the stigma, and still searching for answers that at the time didn't exist or weren't widely known.

I approached the 3 year mark of my daily chronic migraine existence with trepidation because of Melissa's story, wondering what might be the day I gave up hope...and although I passed it with some relief that I hadn't harmed myself, I WAS haunted by the "It could have been me" thoughts, as I did have frequent thoughts of suicide and even a plan on a few occasions.

I'm glad to say I got help for the crushing depression I felt then; although it's by no means a cure, it does help me cope exponentially better.

Many of us are still lost there, though.

During a livestream Q&A I did on Chronic Illness on The Mighty, I touched on the story of Melissa's loss and how it affected me although I'd never had the chance to know her, and included her in my reasons that I feel so strongly about stressing the importance and relation to mental health and chronic pain/illness.

She still is a large reason that I do this.
My others are the my own experiences, my family, and the countless others who are in the trenches fighting this battle at any given time.

Yes, migraine can kill. It kills through depression, though loss of hope, and through suicide.
Yet it still isn't seen as the monstrous disease that it is.

I want to help change that. For Melissa and for every one of us.

- Selena

"The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent."
(Quote from The Daily Headache)

Photo from BrainWreck Rebels Melissa Dryer Foundation

Looking Ahead to June: Migraine and Headache Disorder Awareness Month

#june #MigraineAndHeadacheDisordersAwarenessMonth

We're coming up on one of my favorite months- Migraine and Headache Disorder Awareness Month!
I'll be sharing LOTS of awareness info intended to reach migraineurs and non migraineurs both, as well as awareness about other headache disorders.

Naturally since chronic migraine is my personal monster, I'll focus on it, but if you have a headache disorder you'd like featured here or on my Facebook page, please let me know! I don't want to leave anyone out--I know too well how that feels.

Also, a great all-inclusive page to follow (this month and all the time) is BrainWreck Rebels - they are excellent support and information for anyone with any type of headache disorder.

The Migraine Warrior and Migraineur Mutterings and Musings are excellent migraine pages as well. I'll be featuring some of my favorites throughout the month of June, so stay tuned!

The Love/Hate Relationship I Have With Medications for my Illnesses

I truly wish more people understood this about chronic illness:

We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Big difference. 

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.

And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.

I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.

And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time.

And I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.

Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.

Confessions of a Chronic Daily Migraineur

Confessions of a Chronic Daily Migraineur: Sometimes I Suck as a Person.

 What kind of a jerk would say this?
Or think it?
Me, occasionally, right before mentally giving myself a swift kick for thinking it.   

Being chronically ill doesn't necessarily make us kinder or more understanding of others, but it can if we let ourselves take that lesson from it.

For that to take root, it has to be cultivated. And cultivated. And cultivated.

How does one cultivate compassion? By first being honest with ourselves....even when it's not pretty. 

1. I sometimes get jealous of my friends. 
Healthy ones because they're healthy, and ones who aren't healthy that have pain free days because they have pain free days.

2. I feel immediate guilt for thinking they are somehow luckier than me, because logically and emotionally I know better than that.

3. I give myself a mental kick in the butt for such a knee-jerk stupid feeling, because one of the main reasons I advocate for awareness is that I hope it may help others from ending up like me.

4. I try my hardest to never show my friends when I feel this way, but I'm often worried I'll fail at it.

5. This is a hard thing to admit and I feel like a jerk.

6. This doesn't mean I'm not happy for them when they share good news or have a good life, and definitely not that I want them to stop sharing either good or bad things with me. I still want to them to not feel guilty about confiding in me.

7. I think many who are chronically ill can relate. And that they hate to be able to relate.

8. I think a lot of us are afraid to admit the less pretty side of what being constantly physically miserable can make us feel.

9. I think we're afraid of being seen in a negative light, especially since we feel the sting of stigma already.

10. Being honest is important, especially to ourselves.

What do we do with this kind of honesty and self discovery?

We work to counter it.

Sometimes we fail, sometimes we succeed.  And whichever it is today, we give ourselves the compassion and the room to be human and fallible.

And then we pass that same compassion and understanding along to others.

Not "JUST" a Headache is an Inadequate Description of Migraine

I know this may be an unpopular post for many migraineurs, but I've got to say it:

I don't like the "not just a headache" thing. In fact, it drives me nuts. Why?

Because it's incorrect, and it still basically says that "migraine = headache plus some other things."

Migraine is not a "headache + some other things."

Migraine = NOT a headache at all.

Migraine = complicated neurological genetic disorder with a plethora of possible symptoms...one of which MAY or may not be pain. 

 

Not all migraineurs have head pain as a symptom.

Some migraineurs have abdominal pain instead of head pain. 

And no matter where you fall on the symptomatic spectrum, migraine attacks can be disabling, with or without pain. 

I really have to wonder how much we ourselves add to misconceptions and stigma by embracing the "not JUST a headache" movement. Why of all things did this become our rallying cry? Was this how we thought it would be more relatable to non migraineurs? 

Because if so, I think it's pretty much proven otherwise.

And worse, not only does it not make it easier for others to relate, it excludes many migraineurs and contributes to lack of knowledge and misconceptions, even within the migraine community.

Why are we using a phrase that limits migraine to a "headache + some other things" when we already feel we're not taken seriously as having a real illness?

Mental Health Matters As Much As "Physical" Health

May is another favorite advocacy month for me: Mental Health Awareness Month.

If you've read any of my previous blog posts, you'll know that mental health is an important subject for me, both in conjunction with chronic illness and on its own.
If you think I stress mental health awareness as it is, buckle up, because I'm going to really focus on it this month.

Mental illness has impacted my life in many areas; both of my birth kids have mental disorders, my 2 adopted kids have both had some issues with depression and trauma, I have depression and anxiety, and I have friends who live with mental illness as well. Currently, the hashtag #1in4 is trending, because 1 in 4 people have mental health issues. Chances are that if you are not the 1 in 4, you know someone who is.

Although we have evolved into a society that is more accepting of mental illness, stigma is alive and well, even within the mental health community. We have more awareness and openness about depression, anxiety, and bipolar disorder, but many other mental illnesses continue to be bypassed or misunderstood.

This month I'll be focusing on the mental health issues that have affected my life.

Happy Mental Health Awareness Month and spread awareness, not stigma!

Turning Pain Into Poetry

I love April.

April is not only my birthday month, it's National Poetry Month here in the US.

I've loved and written poetry for as long as I can remember. To me, it's as necessary as the air I breathe. So it was natural for me to incorporate my illnesses into my writing when I started progressing from episodic migraine to daily chronic, when depression had the upper hand, when traumatic memories came knocking, and when life in general dealt out lemons.

It's also my self therapy (I despise journaling personally) and a part of how I reach out to others...nothing says "me too" like reading your own thoughts, struggles, pain, loves, or triumphs in blazing emotion from another person.

And there's nothing like that "I'm not the only one" moment. I know because I've been there--from being an abuse and domestic violence victim to motherhood to depression to chronic illness to life in general to beautiful moments.

Turning pain into poetry...into a blog post...into art...into outreach...into advocacy...into connection with others.
I have never subscribed to the belief that our struggles are given to us as part of a mysterious greater plan/purpose or to better us, because I don't believe God is that cruel ("Oh, let's take her niece, because then she'll write an article about grief that helps others"...seriously? That's not the God I follow), but I DO strongly believe that we can turn anything into an opportunity to help others.
In doing so, we give it our own purpose.

This National Poetry Month, I'm celebrating that purpose.

Mourning the Loss of an Advocate: Amy Bleuel

****WARNING--THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE ATTEMPT SURVIVOR.**** 

My heart has been heavy the past few days since the report of mental health advocate Amy Bleuel's death was released.

For those who don't know who Amy was, she pioneered a network of peer support via her non-profit organization, Project Semicolon, founded in 2013. Project Semicolon exploded into social media consciousness in 2015 when pictures of semicolon tattoos inspired by the Project took off and started spreading like wildfire, but I was a follower of the Project since 2014 when I came across a photo on Facebook dedicated to Semicolon Day:

(The above photo is from 2015, but the one I came across was the same or similar.)

Project Semicolon defines itself as "dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury", and "exists to encourage, love and inspire."^[8] While they are devoted to achieving lower suicide rates in the U.S. and worldwide, they do not themselves practice psychiatry, and the staff are not trained mental health professionals.^[4] Rather, they recommend contacting emergency hotlines (e.g. 9-1-1 or the National Suicide Prevention Lifeline) or seeking mental health professionals.^[9]

According to a report by the Centers for Disease Control and Prevention, suicide is the 10th leading cause of death in the United States. with 42,773 reported deaths in 2014.^{[10] (from Wikipedia)}

I can't stress enough how important the Project was to me as someone who has a past history of self harm, who has struggled with depression and anxiety, and as a suicide attempt survivor and the mother of a suicide attempt survivor.
Amy made it okay to talk about these things more openly for so many and touched so many lives with a small punctuation mark. By nature, those who self harm tend to hide what they do. There are differing reasons and methods of self harm that I won't go into here, but the nature of the stigma has prevented many from seeking help or having hope for recovery. Suicide attempts often have similar stigmas attached, and many survivors, suicide loss survivors, or those considering suicide tend to feel alone even in the mental health community. Amy gave us a place there.

As an advocate for mental health as well as chronic illness, I admired and continue to admire Amy and her message of inclusion and support.

Amy was a suicide attempt survivor who struggled with depression and trauma PTSD herself, and whose father died by suicide. As many know, survived suicide attempts increase the risk of death by suicide in an individual. Yesterday, it was indeed confirmed that Amy died by suicide.

People tend to think mental health advocates have the answers and have conquered, but we're really still in the battle with them.

We're navigating the same waters, but don't necessarily have a lighthouse in sight, a life jacket, or even know how to swim in uncharted waters...we just know we're called to help others.
Sometimes in helping others, our own self care takes a backseat; sometimes because it's easier to focus others' problems, sometimes because we get caught up in what we do, and other times because we just don't see that we have that same safety net we try to be.

When an advocate dies by suicide, people wonder what will happen to those they reached out to.
Will they feel "cheated" or abandoned?
Will they lose hope and give up?

Such a loss does not invalidate the message or their work. It makes it more important.

Rest in peace, Amy Bleuel. Your story is still not over, and neither is your legacy.

~ Selena Marie Wilson ~

When the Chronic Illness Monster...is You

You know, many of us chronically ill/disabled folks complain about people who are inconsiderate/insulting/disbelieving/offensive/etc...And in many cases we are justified in calling out such behaviors and advocating for ourselves and others--we are not any less deserving of courtesy and respect than those who are healthy.

But on the flip side, we can also sometimes be at fault or inconsiderate and self absorbed--being chronically ill may make us more empathetic toward others, but it doesn't mean we're always "on" with it...and boy, have I heard or seen posts from some of us who consider themselves blameless when they say or do some ugly things, because "I'm so miserable, of course I'm b****y! What do people expect?"
Or who complain about people not making an effort to be in our lives...and don't notice the ones who were there quietly slipping away because WE didn't make an effort.

I'm not talking about an effort to meet expectations that our illness makes unrealistic; I'm talking about things like a text now and then to ask THEM how they are (none of that "but I'm worse off than they are!" crap. Of course we think they are if they're healthy...but don't we know damn well looks are deceiving? Everyone has some kind of struggle, and what they're dealing with may seem small to us, but it isn’t for them); a call to ask how something they're involved with went; an effort to get together on one of our "good" days, even it's only sitting on their couch.

I've been guilty of it recently--not being a good friend.
And worse, it was with my daughter, who has some health issues and an almost-4-year-old, but who has made more effort and time for me than I have over the last little while.

And it's so, so easy for us to put things off when we are struggling...that phone call you'll make tomorrow if you feel "better," that text you forgot to send today, that message on Facebook to the friend across the globe who is dealing with a problem, that attempt to reschedule plans you had to cancel with your family...that can wait another day, right? Because you feel just hideous right now and your depression is raging...one more day won't hurt.

But it CAN  hurt.
It hurts them. Especially if they are the ones who have given us unconditional support and we put them off like an unpleasant task because our bad day is priority...and they are the ones who always give us consideration on our bad days.

Our bad days are far more numerous than our "good" ones. How many do we continue to put off the things we don't feel up to?
People are not things to put off.
We think we know that...Of course they're important to

us.

But do they know it when we don't make sure to show it?

We always think there's time...until sometimes there isn't.

Luckily, I woke up and realized there might be more than just her being busy with her own life that was causing a distance between us...and that it might be me. And I asked. And she came over and bitched me out good. 

And instead of justifying it with an "I've been miserable and depressed for the last 3 months," I agreed that I was an inconsiderate b**** and had been a lousy mom and grandma...because I was.
No amount of being sick and depressed excuses it.

Luckily, she is probably more forgiving than I tend to be.
Luckily, nothing happened during that time that makes reconciliation impossible.
Luckily, I can see what a jerk I was to the people around me...the ones who care most. I can see that I adopted the "It's okay because I'm sick" mindset that I've always despised in others...and I can admit it to myself and those who I care about.

I've been a jerk.
Luckily, I have people who will tell me when I am one, because they are what keeps me real.

And last but not least, luckily she was okay with this being turned into a blog post, because hopefully it'll help keep someone else real.

Don't be that jerk because of your illness. It doesn't give you a free pass. It just makes you an unlikable ass.

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.

A Beautiful Life

My belief. My story.

I've lived through emotional and physical abuse.
I've lived through rape.
I've lived through depression and self-harm.
I'm living with chronic illness--chronic migraine, depression, and anxiety.

You can let it break you down, or you can keep going. I used to say you can overcome it, but I've since learned (thanks, chronic illness) that some things can't be overcome. They CAN be gotten through, lived with, and we can live in SPITE of them, though.

Some days are harder than others, no matter what you're going through. Some days I'm a quitter. Some days I give up. But there's always a new day and a new chance to reach inside yourself for that spark that keeps you going.

"It's not what happens to you, but how you react to it that matters."
Epictetus

I've found this to be true, whether it's what has been done to you or just what life throws at you.  Bad things happen. Horrible, unjustified things happen. Things or people scar you and wound you. You can't always control what happens to you. But you can control what you DO with what happens to you.

You can chose to let it make you do bad things, to give up on life, to be frightened of life, and/or be bitter.
Or you can chose to let it make you compassionate to others going through it, a fighter, and/or a victor.

Don't get me wrong. I've chosen the first set of options before. I've hurt people and done things I knew were wrong. I've lived in fear of getting close to others and in fear of betrayal. I've lived in fear of myself, and with anger of epic proportion. I've lived without caring if anyone cared for me or about what I did.

I've learned that it hurts you more than anyone else to live that way. It keeps you tied to those hurts and those who hurt you. It gives them the power to keep controlling you and your choices.
Plain and simply, what it is IS giving up control and responsibility of your own life.

It's why I eventually came to choose the latter options.

It's not easy, but it IS worth it. It can become beautiful.

On Depression and Losing My Childhood Icons

I haven't done a new post in a while--I've been fighting monsters.

No, really.
I've been fighting my daily chronic migraine without meds for a month, and it's been really an exercise in willpower to find reasons to keep fighting while I wait (and wait and wait) to hear anything on my application for disability.

Depression has been my constant companion lately, and the death of yet another of my childhood and adult heroes has affected me deeply.

Carrie Fisher was the princess we girls needed in the late 70s and early 80s--a tough, take no shit lady with a vulnerable side. As an adult, her openness and advocacy for mental health has been amazing and a role model for my own advocacy.
Her death on top of the loss of so many other pieces of my childhood has left me reeling.

It's also made me think (scary, I know)--why do the deaths of my childhood icons affect me so profoundly?

Because they've been a part of the many lives I've lived. Imaginary lives, but still...I've been a Rebel Princess, a warrior princess, a crime fighting "angel," an amazon princess, a smart arse teenager with a stolen baby sister..I've been in a galaxy far, far away, in the Labyrinth fighting a goblin king, and my own house simultaneously. I've fought with lightsabers, blasters, a lasso of truth, my fists, and my wits. I've journeyed Middle-earth and Narnia. I've been a wizard, a mutant, an elf, a hobbit...all before second breakfast.
I've been a glittery rock star and a soulful crooner (not for an audience, thankfully). I've sworn to never dance again the way I danced with a good friend.

But mostly, I lived and dreamed and breathed through other characters when I was a kid still trying to find out who I was and who I would be.

The people who brought to life all those pieces of me...have been pieces of me. They've given me heroes and adversaries worthy of them. They gave me an escape when I needed one, sang to my soul, and gave me the courage to become me in all my many facets.

I mourn what they were to me and the loss of the people they were in their own lives.

Rest in peace, Carrie. You are one with the Force now. Thank you for all you gave me.

Tired Of Being Sick And Tired -- The Chronic Migraine Merry-go-round

Chronic illness is for life.
That's the hardest part of it, I think--knowing that there isn't a light at the end of the tunnel, and if one should appear, it's probably a freight train.

When one has a cold, flu, or infection, you know that no matter how miserable it is, there's an end. It will go away.

Chronic illness doesn't go away.
It may be treatable...but treatable doesn't equal better or even feeling relatively normal.
It's like luggage. Ugly luggage that you didn't even get to pick out and have to drag everywhere.

As much as I hate taking medications...it's even worse not having them to take on a regular basis.
My sleep schedule is a mess and I think my body thinks afternoons are mornings now--mornings were the worst pain/symptom time of my days and now it's afternoon/evening.
Botox downswing is hell...but even more hell is knowing I can't get my next treatment.  

Sick of being sick.
Sick of talking about being sick.
Sick of knowing others are sick of hearing about it.
Sick of it being my day to day and having little else to talk about.
Sick of knowing it's for life.

Sick of being in the gray area of waiting and wondering when the next time I can get relief will be.
This is hard. Harder because I've had treatment for a while and now it's gone.

I don't know how I did this before. Maybe not ever having options before was better, or at least easier to deal with because I didn't have that hope before.

All I know is it's so damn hard to exist these days and to be okay with it. So hard to act like myself. So hard to care. So hard that no one around me really understands why it's so hard and I can't just deal with it and move on.

And I can't understand how I can be expected to deal with it and move on while I have to haul this luggage 24/7, 365.

It's there in the shower. It's there hanging on me while I'm doing dishes, getting dressed, eating...it wakes me up when I sleep or keeps me awake.

No one else can see it weighing me down, but I feel it with every breath I take.

It confines me. It smothers me. It sucks my energy and my enjoyment of life.

Chronic illness is for life--but it isn't so much a life as it is a life sentence without any possibility of parole.

I know I can get through life...but I don't have to like it. I don't have to smile and put on my happy face. I don't have to pretend for anyone else's comfort while I serve my time.

I just have to keep breathing.
But sometimes that just doesn't feel like enough.

Health Care is a Luxury For Too Many

Many people would deny this, but health care is a luxury.

Ask the legions of chronically ill and disabled, who fall in between being unable to work but not considered disabled "enough" to qualify for disability.

Ask the ones who are having to depend on someone to support them and for whom that single income isn't enough to cover doctor visits, much less treatment and meditation to manage their disease/disorder.

Ask those with a life-threatening illness that can't afford care...even with insurance.

Ask the single parents who provide for their kids but don't have enough to provide for themselves.

Many people would say health care is a necessity.

Obviously, many people don't consider it one, though.
People like me are supposed to suffer in silence or have the decency to die quietly so they aren't a drain on the system.

Health care is a luxury.
Pain relief is too dangerous to trust us with.
Consistent treatment is non existent to many of us.

I'm tired of suffering in silence and I'm not going to die quietly. 

Im going to point out the uncomfortable truths about life with chronic illness until I'm six feet under.

For two years, I was on state medical assistance...in October of this year, I was informed during a renewal interview that I didn't qualify. Even *better*--the fact that I'd been receiving assistance at all was due to an agency error.

A two year agency error. Thousands of dollars in treatment and medication that I'd never been entitled to. The supervisor I spoke to was quick to reassure me that because I wasn't at fault, "at least you won't have to pay it back and you didn't defraud the government."

Honestly, those were pluses, but also were and are the least of my concerns. High on my list of concerns was, "the treatment that has been giving me marginal improvement is no longer an option for me." 

Because even marginal improvement is a big deal when you live with chronic illness. Marginal improvement meant a few days a month that I could play with grandspawn, visit family, cook dinner for my family...those few days were days I hadn't had in over a year.

I am still receiving mental health care through a different government program (MHMR), thankfully. Antidepressants are not something it is safe to stop suddenly, but more than that, they literally keep me alive. My antidepressant is currently the only medication I'm on. 

I've applied for disability and SSI (I did so the day after my devastating news that my Medicaid coverage was a two year error), but waiting to hear a verdict can be a long process--as long as 5 months, occasionally as short as 3. That isn't counting the appeal process if I'm denied disability, and chronic migraine is often very hard to qualify for. In Texas, only about 33% of applications for disability are approved. The number of disability applications approved for chronic migraine is much lower.

So I wait. 

And while I wait...I suffer. 

But not in silence. Not any more, not ever. Both for myself and the others who are weathering the same storm, I raise my voice. 

When Just Existing is Hard, I Remember This

Today is hard, but I’m trying.

Today, the physical pain of my illness is keeping me from moving much, and the depression I feel over that is a constant thorn in my side.

But I’m trying.

Some days are good, some are bad, and some are worse. Logically, I know this. I know this from experience. But somehow it doesn’t always make it easier.

It’s not the physical pain that’s the worst. It’s the mental and emotional pain that goes with it.

It’s not trying to get through the things that need doing; it’s trying not to do them that is the struggle. There is a counter piled with dirty dishes and we have no clean spoons. The cat litter needs changed. I have an appointment that needs to be rescheduled, but the thought of talking on the phone when my migraine is screaming means it won’t be done today.

I have limits that my body and my illness has set for a reason, I remind myself. Pushing past them is a very bad idea.

I know this… but I still feel the weight of the things that need doing like a physical pull. And fighting the guilt for not doing them exhausting.

But I’m trying.

I’m trying to smile at the people and things I love.

I’d rather be crying, or raging at my limits, or both. I’d rather be curled up under my blanket avoiding them, but I’ve learned that this isn’t good for me, either, because the depression that is sinking its greedy claws into me is just waiting to isolate me and make me feel alone and hopeless.

It’s hard to fight its whispers, but I’m trying.

Today it is hard to exist.

You’d think that it would be easy to just breathe, wouldn’t you? To just let it all go when the pain digs into my brain and even thinking is hard…but it isn’t. Just breathing feels like the hardest thing I’ve ever done, and thoughts are running through my brain like manic mice.

Existing is hard, but I’m trying.

I’m holding on to the world by the skin of my teeth today. I’m remembering that there are good days, even if I can’t see them. I’m reminding myself that I still do good things, even if today I don’t feel good enough.

Today is hard, but I’m trying.

And for now, that is enough.

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

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. )

Why I Don't Hide My Illness Any More

The Pretender Mask.

The smile that hides the pain.

The “I’m fine!” on days we definitely are not fine.

The tough I’ve-got-this front when we’re falling apart inside.

Everyone I know with a chronic illness has been behind the Pretender Mask.

Sometimes, it’s because we don’t want to explain our illness yet again. It’s exhausting, especially when the illness is one that doesn’t show on the outside. Invisible illness often leaves us feeling as if we have to validate it. We look fine, so how can we be that sick?

Sometimes, it’s because we don’t want others to worry, or maybe because we just want to be “normal” for a little while. That cashier doesn’t know us — to her we can be just another person, not the sick one. We won’t be interacting with her long enough that she has to see how not OK we really feel as we smile and make small talk.

And sometimes, it’s because we can’t admit to ourselves that we won’t be able to kick this thing’s figurative ass. Oh, we can fight it, yes. But the sad truth for many of us is that’s all we can do.

And it’s hard to accept that. It’s terrifying.

I wore it for over a year, that Pretender’s Mask.

A year or so of acting tough and telling my friends I would be OK, I was going to get better, I’d find that magical treatment.

I’d kick its ass.

I was terrified. I still am. And every time a new symptom crops up or the pain derails my day and confines me, I get terrified all over again.

I haven’t given up hope for a treatment that will help. But now I know and admit to myself that’s all it will do — help. I’ll still probably be disabled and not have a “normal” life (not that I’ve ever been “normal,” anyway).

And for some people, that’s off-putting. They see it as giving up, as settling for less.

It’s lost me friends.

And that hurts.

But what it is is being real and being realistic. I try to be optimistically realistic, and I usually succeed.

And I’m not pretending any more.

Not for anyone.

I won’t shove my disorder under a blanket to fit in someone else’s comfort zone — even my own comfort zone.

That’s a luxury I don’t have anymore.

I’m a fighter. It’s what I do. And I can’t fight something that I’m hiding.

(Originally published 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.

4 Real Ways Stigma Affects Us All

To be honest, I never really realized how much stigma affects so many of us until I became chronically ill.

"Who cares what others think? Just let it roll off."

That was pretty much my attitude about it...this despite the fact that my kids struggled with mental illness and I devoted years advocating for them and that I've faced prejudices about being a suicide attempt survivor and that I used to self-harm.

"Sure, it's annoying and sometimes hurts your feelings...but it's not like it's physically harmful."

WRONG.

I've learned better. Here are some ways stigmas can actually cause both physical and mental harm.

1. INADEQUATE TREATMENT.

Where to start with this one? Stigmas can lead to a person not receiving proper care...both from medical professionals who have absorbed and harbor the ideas that pain patients are drug seekers, that mental illnesses are not "real" illnesses, and that some disorders don't "actually exist," and from ourselves internalizing these ideas and being afraid to seek care for fear of being stigmatized or believing what we've heard--it's a weakness/character flaw, we can push through it/think ourselves happy/don't have a real problem/are imagining it/others have it worse.

Yes, this is so pervasive that this is a reality. And whether it's depression or another chronic illness, we can literally risk our health and our lives by not seeking treatment.

2. LACK OF REAL AWARENESS.

Number one leads into this so well. What does awareness matter? What does lack of awareness affect?
Well...everything.
When the facts of a disorder/illness are distorted or unknown, we face judgment from the uneducated, misinformed, and even ourselves, for one.

Lack of awareness affects research funding...which affects available treatment or whether doctors even know how to treat our illness (not every doctor is an expert;  far from it). Many medical students do not choose a specialty that isn't well funded research-wise. Before you judge them harshly for that, think of how hard it would be to spend years of your life not being able to actually help do more than a drop in the bucket for your patients--not to be able to offer hope for a cure or even a treatment that will make a noticeable difference. I've been lucky enough to have some doctors this truly bothers and who have confided that it IS discouraging for them as well as for their patients.

3. DISCRIMINATION and RECRIMINATION.

This is alive and well; although we as a society have become more accepting and accessible, we also have a lot of misconceptions about what is a "real" disability...and many have no qualms about holding forth on it to those that don't fit their ideas of it.

A friend of mine came under attack on her chronic migraine blog recently from a gentleman (I use the term loosely) who had these choice comments:

"He said on an image that said 'Pain doesn't go away, you just make room for it'...Get off your phat ass an live with it, just like everyone else!'

On an article about depression... 'There you have it, it's psychological. Now go see a good therapist and get back to work, you shirking POS.'

On an image that said 'My pain is invisible but I am not': cry me an 'effin river you whiney douchebag.'

On image that said 'stuck between Hell and Hope.' : 'You want to know what hell is? It's listening to you vapid brainless bloggers run on about your "pain" and every little ache you have. Don't eat like a pig, eat healthily, do some freakin' exercises, and then get a job and pay back this country for all the down-time you've gotten and sucking off the workmen's compensation, SSI and SSDI funding. Parasites!'

See the full post on Brainless Blogger here.

Many of us with chronic health issues have had these sort of comments fired at us, even from some family and "friends." Some are more subtle, some are outright derision. On top of health issues and the guilt we already feel, these kind of remarks can be horribly painful...and the fact is, many people truly believe them, especially when one's disease is "invisible."

These are kinds of people who vote to cut welfare and disability assistance or make them harder to qualify for on the rationalization that anyone who doesn't "look sick" is a scammer or leaching tax dollars from those who "really need it" and are "legitimately disabled." The sad part is that some of them are disabled themselves and judge others on whether they're "as badly off."

4. INTERNALIZING STIGMA.

This is a big one and ties into lack of awareness and not practicing self care.
It exacerbates the depression, anxiety, and low self esteem that often goes hand in hand with chronic illnesses, as well as perpetuating the feeling that we shouldn't talk about it.
If your chronic illness(es) are mental health disorder(s), this is really pervasive and can be extremely detrimental.

What can we do about stigmas?

Sometimes nothing...some people will feel this way no matter how much we attempt to educate and sway them, and that's the hard part that can discourage us.
Sometimes it's just more self productive to walk away from those toxic people who damage us and try to make us feel at fault.

But awareness is the single most effective way to combat stigma, and those who the message we spread reaches are the the ones who matter most. Don't waste time on toxic people...but don't let them stop you from advocating for yourself.

And please, don't let them stop you from taking care of you.