Tuesday, August 13, 2019

The reality of mental illness

This morning, I came upon a comment in a community of ARFID sufferers and carers that got me thinking.

The poster was frustrated with his/her parents inability to just "accept" and "live with" their level of pickiness and indicated the relationship made them even more unwilling and unable to eat.

I know this individual looked at this as a parent unable to accept them for who they were or how they were, but the only thing I could think was - isn't it the parents job to help their child overcome their challenges?  The way the commenter presented the issue was he/she was unwilling to change.  They liked who they were.  They had no desire to change how they were.  They didn't see a problem with who they were.

I get that.  I 100% get that and as a parent I do accept that my child sees food and the world differently.  But I also see how the way she views food will present her with difficulties when she enters the adult world, if she would even make it there if I enabled her to continue in her disordered way of thinking.

Here's the thing.  ARFID is an eating disorder that is a part of a bigger mental health issue.

I strongly feel that if I were to enable her to continue her eating patterns, it would be doing her a disservice.  I would be failing her if I enabled and encouraged her to eat how she wants.  One example that came to mind was that of depression.

I can speak to depression and anxiety from a very authentic place.  I have struggled since a teen with depression and since prematurity entered in, I have added post-traumatic stress disorder and further anxiety and depression.  My post partum depression never left.  Add to that the ARFID diagnosis and trying to care for a child who has absolutely NO DESIRE to eat and will put up any wall she can to avoid the simple act of bringing a fork from her plate to her mouth and I was up the creek without a paddle.

Every morning that alarm would go off and I wanted to cry.  Because now I had to get out of bed.  But I didn't want to get out of bed.  I wanted to stay right where I was, enveloped in the comforting warmth of the disillusion that I could just stay asleep and not have to deal with my day.

Every day, my biggest accomplishment and challenge was simply getting out of bed.

What if I didn't?  What if I chose to stay in bed?  What would happen?  Children would not get fed, I would not get fed.  Bills would not get paid.  Life would simply stop in a very real and eternal way.  But I would be happy and content wasting away in my bubble of unawareness.

Is that any way to live?


The very reality that life would cease to exist if I just "accepted" my mental illness as a part of me and gave into it should be answer enough.

Neither am I saying that I (or she, or this poster) is "less than" for struggling with mental illness.  No, the very opposite.  They should be loved, and encouraged, and guided to find the tools to overcome these challenges.  By pushing one to not accept their status quo, the hand that they've been given, aren't you actually giving them a chance to overcome?

So, yes, I push her.  I push her beyond her boundaries.  I fight her day in and day out.  I am working to give her the tools she needs to eat even when she doesn't feel like it.  Or want to.  Or in an uncomfortable situation.  In the same way that I can't allow myself to stay in my bed, she can't allow herself to say I don't want to eat today.

Staying in bed is not an option.  Not eating is not an option.

The reality is that mental illness is hard.  It's debilitating.  It's confusing.  It's not a straight line from a to z.  It's painful.

But recovery is possible.  A full life without the restriction of our mental illness is possible.

If you can just fight for it.

Tuesday, March 26, 2019

It's not about control, y'all!

Seriously.  I can't tell you how many times I have heard this.  It's a power struggle.  Stop fighting her and she'll stop fighting back.  It's about control.

I swear if I had a quarter....

It's not about freaking control.  But it is also something I have struggled to understand.  Especially how to explain it to others not living it.

You see, when your child has an eating disorder, particularly a restrictive one, something happens in their brain.  It's an anxiolytic response.

E is so overwhelmed and terrified of her world.  A world she does not understand.  A world that is scary.  We sat together last night while she cried because she was afraid to grow up.  Afraid of a time that her father and I wouldn't be here, because she needs us so much.  She was afraid of the standardized testing they are about to do in school.  She was afraid of letting go of the past, because she was afraid she would forget those that were special to her in the past and their memories.  Her stomach and brain were churning with so much fear and she became afraid that she was going to get sick.

It's a horrible vicious cycle.

Restricting her food (or, as she said to me last night, not eating so she will stop growing) has become like an addiction to her.  She has realized that when she doesn't eat, she feels better.  She is not afraid.  Restricting the amount and type of food she eats has become an addiction to her.  It has become her way of dealing with the anxiety that consumes her.

Think about it this way.  An alcoholic uses alcohol to deal with difficult things.  It soothes them in the chaos of their life.  But, from the outside, we understand how the alcoholism is actually destroying their life and their health.  It causes them to act and do things that they may not otherwise do if they were not in the grips of the need for that drink.  

To E, restricting is alcohol.  It has become what soothes her when she is afraid.  Is there a control element?  Sure.  But it's a false one.  One she has told herself and that her brain has convinced her is the only way she can control this world she is in.

But from the outside, from our point of view, we can see the damage this way of thinking causes.  The malnutrition, the aggressive behavior, the anxious movements of her hands.  But to her, she sees that she is doing her best to stop herself from growing up and our requirement that she eat is something to be fought.

She does not comprehend that this restriction will ultimately kill her.


A very wise friend of mine said it this way.  "Thoughts control behaviors. She cannot control her thoughts. They are what are disordered. Her behavior comes out of the thoughts, not the other way around." 

When you see it as a control thing, you are seeing the behavior.  But the behavior is not the origin of the problem.

No.  This is not about control.  This is not about the parent/child power struggle.  Or the child/authoritative figure power struggle.

This is about fear.  Fear of living a life without her drug.  Fear of living life without her restriction.

Monday, March 25, 2019

Don't Stop, Can't Stop, Won't Stop

Lately, I've been unable to sit still.  I can't stop moving.  I'm cleaning, or painting, or organizing.  We are mostly done with one big project (replacing the doors in the house) and I can't stop planning for the next (landscaping and cleaning the backyard and remodeling a bathroom.) 

I laughingly joked to myself the other day if there was an "addiction anoynomous" for home updating.  Because I just can't stop.

Then at a recent annual well-check for myself, and they give you that ridiculous self-assessment form with a million different questions that ask the same thing but in different ways, one question stuck out to me.  It was on a form to assess your anxiety levels and it asked if you feel the need to be in constant motion.

Well.  Yes.

I mean, I knew the reason I kept moving was to keep myself from stopping and thinking because if I did the weight of it might crush me.  But I never associated it with anxiety.  It makes complete sense, in hindsight.  The question is, what do you do about it?

A friend posted this image this morning and it completely resonated with me.  They need to add the constantly moving, ha!  But do you see anxiety in your life?  What are you doing about it?

Monday, March 18, 2019

Sometimes self care isn't self care

Self-care seems to be all the rage these days.  Every where you turn, moms are being encouraged to "get away" and "do something for themselves."  Even the Today show did an entire piece on how women are focusing so much on others to their own physical detriment.

While this sentiment is very true and valid, they miss one very important piece.  What is the definition of self-care?

(disclaimer: this is not my image, but from Pexels)

Dictionary.com defines self-care as "the practice of taking action to preserve or improve one's own health." And "the practice of taking an active role in protecting one's own well-being and happiness, in particular during periods of stress."

But that definition is fairly non-descript.  Is it nails?  Or massages?  Or vacations?

Or is it simply sunshine, fresh air, early morning coffee and organizing your kitchen cabinets?

I have found throughout this last year that self-care for me is two fold.  Redecorating my house (sorry Andrew) and reorganizing/cleaning/decluttering.

And maybe it's more than just decluttering the physical space.  It's definitely self-preservation, because quite honestly, it keeps my mind focused on anything and everything than what I am going through.  It keeps the thoughts out of my head that so easily crop up when I have a free moment.

So yeah, I'm avoiding actually exploring those deeper recesses of my mind, but honestly that needs to be dealt with when I am no longer in the midst of a battle that takes every ounce of mental and physical energy I do have.

Saturday, March 16, 2019

Maybe it's ok

"Maybe it's ok if I'm not ok
'Cause the One who holds the world is holding onto me
Maybe it's all right if I'm not all right
'Cause the One who holds the stars is holding my whole life."  ~We are Messengers

Mental health has a stigma surrounding it.  I don't know why but it seems no one ever wants to truly say how they feel.  Conversations never go more than skin deep when someone asks you how it's going.  How many times have you been asked that question just to respond with "it's going ok" or "things are great!"  And how many times has that actually been what you wanted to say.

I'm guilty of this, and not so much because I'm afraid of the stigma of mental health.  Heck, I'm not afraid to blast it on Facebook.  PTSD, anxiety, depression are rampant in my life and in my mind.  I've actually been discriminated against because I fully admit to PTSD following E's NICU stay, because I want the world to know that yes, the NICU can be THAT traumatic and PTSD is more common after a NICU stay than most would believe or know.  And I do so hoping that other NICU moms read it and realize that a) they have it too and b) it's normal after what they've been through.

But I think for myself, I don't say what I really feel because I don't want anyone to feel like I'm just a Debbie Downer.  I don't want to bring anyone else down just because I'm struggling.

And yes, I'm struggling, and not in a bad way.  Who wouldn't if you woke up every morning preparing yourself for battle and a battle that you don't know when it will end?  Would you be ok if you had to watch your kid with every meal display anxiety?  Picking her nails, her skin, playing with her food making you think she's eating it, going for her drink.  Anything other than putting the food on her plate in her mouth.  When every meal takes an hour, sometimes more, even breakfast.  A simple bowl of cereal can become a line in the sand.

I think part of why I am struggling is because my personality is one of transparency.  I need to share, to get these words out of my head, in an effort to reduce the power they hold on me.  The more I keep them in the more the bounce and echo and swirl with dizzying power.  But I've been afraid, yes afraid, to share her story in this journey.

But what if I wasn't afraid?  What if she wasn't afraid?  What if everyone shared and the stigma disappeared?  Yes, she has an eating disorder but it's not something to hide and only share in whispered back room conversations like she has the plague.  Yes, we avoid any activities that include food because I'm not having that battle in a room full of people.  Not because I'm embarrassed by her, but I am, in many ways, afraid of how others will see her in the midst of the lack of knowledge surrounding eating disorders and mental health in general.

The song Maybe It's Ok has been bouncing around in my head for a few days now, especially the "maybe it's ok to not be ok."

Remove the stigma.  Because sometimes it really is ok to not be ok.

Tuesday, May 1, 2018

Which would you prefer? Tarantulas or scorpions?

Yesterday, I stared into the abyss of my well stocked pantry, and I hit the "wall."  The wall that comes out of nowhere, that you stand it the base flat on your ass and wonder how you got there.  The wall that is so tall that it seemingly has no end.  And all you have is a teaspoon that you mindlessly and frantically use to scoop out any and all dirt from the base in the vain hope that if you can't get over it, at least you can go under it.  But the foundation is deep and you are so so tired.

Meal planning or any effort at all to put food on the table has become so disheartening and stressful, I don't even want to eat anymore.  But I do, spoonful by spoonful, because of who is watching.  Because if I require her to, how can I not?  Putting food in front of her can go one of two ways.  She grudgingly eats it like a robot programmed to pick up a spoon and shovel things from her plate to her mouth. Or it can go like today, where you'd swear that you must have put a plate of writhing cockroaches in front of her by the sheer veracity of the reaction.

And in some ways, maybe I did.  I've had it described to me that asking her to choose between two different meal options is like asking her to choose between eating tarantulas and scorpions.  I spent at least 20 minutes being screamed at because I had the audacity to put food in front of her and expect her to eat it.

Just keep digging.  Spoonful by spoonful.

Monday, April 16, 2018

Stop saying God is Good

Stop.  Just stop.  It's like "everything happens for a reason." 

I'm not saying God isn't good.  But how can you reconcile a "good" God with one who allows a child to die. 

I like this description I read on the blog "Still Standing."

"You got the job! (God is good!)
You closed on the house! (God is good!)
That car barely missed you at the intersection! (God is good!)
You’re carrying twins! (God is good!)

See where I am going with this? Because the reality is that if you believe God is good, then He’s good all the time.

Like when you lose the job. Or the house is foreclosed. Or your car is totaled. Or the twins die.
And while I believe that to be true, because I believe the nature of God is unchanging…would you ever in a million years tell someone who just lost their baby to cancer: “Isn’t God sooooo good, though? Wow, didn’t He do it right?”"

I recently heard someone say how we find our calling in life is by the #&*! we go through.  The bad, horrible, painful stuff.

And while I don't disagree with the premise, because all the calling's I have found are directly as a result of the trauma's I've experienced.

But it floats around in your brain the same way "everything happens for a reason."

There is no reason that could ever be "good" enough to justify the loss of a child.  Or a spouse.  Or an illness of a family.  Or war.  Or crime.  Sure, good can come from a horrible thing but that does not JUSTIFY the bad.

When people share their pain with you, they aren't looking for comfort in the sense of "this too shall pass" or "good will come of this."  They just want a hug.  And validation.  That their pain is justified.  That they have a friend who will walk with them through this season.

And yes, good can come from it.  But maybe that's something they need to discover for themselves on the other side of the season.