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?

HAPPY MOTHER'S DAY! 

Wishing all a Mother's Day filled with love.

- Selena 

Mental Health Awareness Month: Spotlight on BPD (Borderline Personality Disorder)

IN MY LAST POST, I EXPLAINED THAT MENTAL HEALTH AWARENESS MONTH IS IMPORTANT TO ME. 

THIS POST HIGHLIGHTS ONE OF THE REASONS WHY.

***WARNING: IF YOU HAVE ATTEMPTED SUICIDE OR ARE A SUICIDE ATTEMPT SURVIVOR THE FOLLOWING POST MAY BE TRIGGERING***

Originally published on The Mighty, April 19, 2017

Today, I read a post that made me think about how the stigma of borderline personality disorder (BPD) can lead to its diagnosis becoming a self-fulfilling prophecy. This quote in particular really hit home:

“Talking semantics may seem oversensitive, but the rhetoric surrounding BPD has got to change. Stop painting us as delirious, insane, selfish, dramatic, manipulative, etc. We’re battling a cruel, ugly monster that most people won’t understand, and we need help just as much as anyone else living with mental illness.”

BPD is all too commonly seen as a hopeless diagnosis, even by many mental health professionals. For most of my daughter’s teen years, she was in and out of psychiatric hospitals, attempted suicide several times and self-harmed. She was in the juvenile justice system and abused drugs. She was diagnosed with bipolar disorder, but I was positive this was not what she had. My son has bipolar disorder, and while I’m fully aware it doesn’t present the same for everyone, the diagnosis didn’t seem to fit her symptoms.

I had started doing my own research into mental disorders when my son was diagnosed a few years before, and something I read was niggling at my brain. I looked up borderline personality disorder. The description fit her perfectly. Every trait was dead on.

My daughter and me (2016)

Her doctors refused to entertain the thought that it might be BPD. What did I know? I was only her mother, and they were licensed mental health professionals. I was met with condescension for the most part until she was 15, when a suicide attempt landed her in the hospital yet again and the doctor treating her had more concern for her welfare. He agreed that her behaviors and thought patterns absolutely fit the description of borderline personality disorder and suggested we find a therapist certified in cognitive behavioral therapy (CBT).

Still, we almost exclusively heard medication and therapy were “not likely to be terribly effective, so we hate to saddle someone with that diagnosis.” Her official diagnosis remained bipolar disorder, but it was added that she had borderline traits in the interest of getting help geared toward her needs.

But what we discovered repeatedly was that instead of her needs being met, the misconceptions and stigma of BPD often meant she was written off as a “hopeless case” by many. Some therapists and psychiatrists still hold this view, and their clients suffer for it, even to the extent of being given up on or not accepted as patients.

We had one nurse tell us to hang in there, that she had BPD but was finally doing better. The therapist we found was encouraging and wonderful. Only two people amid a sea of professionals were hopeful.

Why is BPD so stigmatized?

Some of the most widely known traits of BPD are often seen as character faults a person could “just change if they really wanted to.” Traits such as attention seeking, intense emotional reactions and manipulative behaviors. In a teenager, they’re often blown off as being “dramatic” or “acting out.”

It’s not that simple. BPD is a disorder, not a state of mind. Treatment can help a person mitigate and manage those traits, but one cannot just “decide not to be that way.”

I’ve frequently seen it said that treatment doesn’t help because those with BPD often don’t seek it or think they don’t need it. This idea is misleading because a number of people with other mental illnesses also don’t seek treatment, think they’re OK or think they don’t need it. Yet BPD is the disorder most commonly associated with this belief. BPD is too often treated as the “redheaded stepchild” of mental disorders, even among others who have mental health disorders.

(We do a lot of SELFIES in this family. I'm sure you can't tell, right?)

With these and other misconceptions about BPD, is it any wonder many give up hope or lack support?

The amount of negative information or misinformation about BPD and the lack of positive information on the internet is appalling, which inspired my now-adult daughter to write an encouraging article about parenting with BPD which was published on The Mighty.

BPD is not a hopeless diagnosis. My daughter may still have room for improvement (don’t we all?), but over the past five years, she’s made amazing strides. She stopped using drugs and has been sober for five years, she’s back in therapy, she’s maintaining well and she is a wonderful mother to my “grandspawn.” She’s reached out to encourage others with BPD via the article she published. I’m incredibly proud of her and all of she’s done and is doing for herself and her son.

BPD is not a hopeless diagnosis. The right therapy for an individual, a good doctor, perhaps medication for associated illnesses like depression, anxiety and a strong support network — these can make an invaluable difference for a person struggling with BPD.

And aren’t our loved ones and ourselves invaluable enough to deserve those things?

My daughter is living proof that BPD isn’t a hopeless diagnosis, as are many others. But a great many need hope. Let’s help spread that hope for them instead of 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.

My Life Story, Written In Flesh

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

I don't know a single person that doesn't have at least one scar.

Large or small, prominent or barely noticeable, every scar has a story attached; sometimes one we remember firsthand and sometimes one told to us because we were too young to remember.

This post is a celebration of all we've lived and struggled with and survived. Our scars are our story...written in flesh or carved in our minds. 

"That's from the time I was chasing my sister on my bike and she stepped in front of me. I swerved on the gravel and the road bit my face. I refer to it as one of her two attempts to kill me. ( Kidding about her intention, not about how I refer to it. )" - me

This could be an example of one my daughter might tell:

"This one is from an emergency appendectomy when I was 8. I got sick from the anesthesia, so they gave me Phenergan. Turns out I have a really bad reaction to it, my mom says I was ripping out my IVs and crawling over the bed rails until they had to give me something to make me sleep."

My friends have scar stories of their own:

"My beautiful battle scar on my upper right arm is still with me to this day! When I was 13 I was diagnosed with stage 3 Melanoma  (skin cancer). The surgeons cut away the entire cancerous section including some of my muscle. The surgery itself was 8 hours.  After months of more minor surgeries, stitches, Dr appointments, rehabilitation, and treatment I was in the clear, as in remission for 5 years." - Abby

"My favorite scar is from a c-section at 19. Frank Breach they called her. Her adoptive parents named her Alyssa. I like that name; I love her wherever she is." - Ericka

Not all scars are physical or visible, but are still carried with us and remembered vividly in a way that affects us years later:

"This one is from when I went to the ER for a severe Migraine attack. The doctor decided to give me Ketamine, also known by its street name, Special K. While rubbing his hands together and bouncing on his feet, he said to me in a giddy voice, "This will be fun!"
It was not fun. The walls moved around me and started closing in on me. The clock on the wall was making circular trips all around it. My bed felt like it was on violent waves of the sea, and I held on to the rail for dear life. My right leg disappeared. I couldn't find it. Then I felt myself fading, until my consciousness was nothing but a small speck in my chest. I thought I was going to be snuffed out for good. I screamed and screamed for help, even though I couldn't hear myself. The nurses ignored my complaints and asked if my Migraine was better. It wasn't. Shortly after, they came back with a second dose and said, "This will help."
It didn't. They left me alone for 2 hours with my hallucinations and paranoia and then sent me out the door in a wheelchair.
My Migraine was still not better." - Brianna

"These are from years of mental and emotional abuse from my father. They aren't all healed even now, 20+ years later." - me

"This one is from my father walking out on us." - anonymous

"My invisible scar is from being raped." - anonymous

Some scars are visible, but not understood...often those who carry them try to keep them hidden because of reactions based on the stigma attached, rather than compassion.

"Are you talking about physical scars or emotional/psychological scars as well? You could write a book on my psychological/emotional alone, but the physical one would be my body. I eat my feelings so it shouldn't surprise me that I look like I do. There are a few others from when I was cutting myself but they are hidden really well. Another thing is since I have always researched any diagnosis and/or test result is I also research the treatments so when I was cutting myself I knew where not to cut. I was mindful of being able to hide them." - Malinda

" These are from years of self harm--for me, it was easier to deal with the physical pain than the emotional pain. Some are hidden, some aren't; they are the days when the only thing that mattered was the physical pain to shield and distract me from emotional anguish." - me

"This one is from a suicide attempt." - anonymous

"I never hid my self harm scars. But people pretended not to notice because it was easier than admitting to themselves I needed help." - anonymous

"My scars are proof that I fought my demons and survived myself.  They are a reminder of my struggles I've conquered." - me

Sometimes scars are something that helps us relate to others or reminders that others are fighting battles we can't always see. No matter which they are, our scars are part of us and of our story and can be used as a source of triumph over the things we've come through.

May your story be a tale of triumph and compassion. 

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.

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.

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.