Tuesday, January 01, 2019

Technologically challenged is not intellectually challenged. 
It's often a symptom of financial challenges. 

This is something we often forget, what with pocket sized computers that update some of us instantly...not everyone has access to the same technology or wants to have access to "smart" technology. 

Sometimes I think *they* are the smart ones. 
Even if it does take a few hours for them to respond to an email. 

Tuesday, June 19, 2018

The Perception of Spoons

The "spoon theory" has taken over the internet, and people far and wide are rejoicing that they finally, FINALLY, are able to comprehend what people with chronic illness or pain are dealing with.  They have a concrete metaphor that they can use to understand what's going on and connect to their loved ones. 

But they don't always get it. 
They think they do.  Sometimes the people they are interacting with think they do.  But they don't. 

Running out of spoons doesn't mean the same thing to everyone.  Especially when you are used to having an unlimited stash that refills quickly.  I've heard people sit down with a sigh and declare that they are out of spoons...and ready for their weekend plans.  Or out of spoons and going to take the kids out tonight.  Or out of spoons and heading to the beach to recharge. 

Or I hear them saying "I know exactly what you mean, sometimes I run out of spoons and I have to keep going so I buy some coffee..."  (Or whatever trick they've found to keep their wheels turning until bedtime) 

I'm not saying that their burn out is not valid, it absolutely is.  But it doesn't compare to what people with true chronic health challenges deal with every day.  If you really want to wrap your brain around spoon theory and "get it", keep reading. 

First...take the spoon theory.  Got it in your head? 
Now...imagine a movie where the protagonist is in the middle of the wilderness, fighting for their life against the weather.  Sun or wind and snow, it doesnt' really matter.  They're walking, slowly...until they collapse.  You see them crawl a few feet and then...Dun, duh dun! They collapse and after a brief struggle the screen goes black. 

That person has run out of spoons.  They have officially used their last spoon. 
They generally wake up to a cheery fire and someone preparing some soup for them to take just a few bites of...not too much, too soon.  They are wrapped in blankets and given fluids and told they gave everyone a nasty scare. 
They take a few days, if not weeks, to recover. 

No one would pour a cup of coffee down their throat and shove them back out into the elements. 

Minus that last bit of babying, this is a pretty accurate representation of running completely out of spoons.  Most people who have been there do everything they can not to get all the way there again, so when we say we're low on spoons or out of spoons, we really mean we're down to the last one and are scared of running out.  But the metaphor still works close enough, as long as we understand what truly running out of spoons looks like. 

Have you ever tried to stand up and your legs wouldn't hold you?  Crawled military style (arm over arm) to get to a more comfortable, or even more flattering, place to collapse and nap?  Let consciousness seep in and out as the world continued to flow around you but you were too tired, to sore, too sick to actually interact with it?  That's what running out of spoons really feels like.  And some of get closer than others on a regular basis. 

Can you imagine a trip to the grocery store sapping your strength enough to put you there? 

Because that, my dear reader, is what chronic fatigue and chronic illness and chronic pain are all about.  The knowledge that something as mundane as sitting in traffic for an extra half hour can be all it takes to make that night out you've been looking forward to completely unthinkable.  A trip to the grocery store can be literally out of reach.  Going out to eat?  Laughable. 

To those of us who have chronic health challenges, we are constantly counting and evaluating our spoons.  Not because we are paranoid, not because we are lazy or dont' know how to "push through". Coffee won't help because our bodies are physically different than yours.  They give out. 


And I don't mean that in the figurative sense. 

I'm not trying to dismiss the real, valid exhaustion that comes from every day living.  You might actually be so tired that driving to a restaurant, sitting in the bright lights with the potential crowds and eating a full meal before driving home is relaxing.  But if you were out of spoons...truly and completely out of (low on) spoons, you'd have to crash in bed for a few hours first.  The very thought of driving to the restaurant, let alone walking inside and ordering and sitting there for the entire time it takes for a meal to be ordered, prepared, served and then eaten...let alone for the check to arrive...might reduce you to tears.  Ugly, shoulder wrenching sobs that have a mind of their own and finally taper off as you drift off into a dreamless sleep...

Cereal for dinner is a thing, and it might perpetuate the problem of low energy but sometimes it's all those of us with chronically low spoons can handle making. 

Low spoons that will quickly replenish from your back up supply and actual low spoons are very different things.  Hey world, I'm sorry you're tired.  Complain all you want.  Just don't judge people who are chronically low on spoons for not being able to function as well as you do when you're tired.  There's a difference. 

Be kind to your spoonless friends.  You might not be able to make it easier for them, but you can avoid making it harder by accepting their lack of spoons at face value. 

Saturday, November 11, 2017

Depression lies.
It whispers insidious lies in your ear, tries to plant them in our heart.  It takes a grain of truth and fabricates a dark and dreary shadowland, trying to convince you that this darkness is reality.  It's constant drone essentially gaslights you into believing the lies.
So that when you do reach out, and ask for help, Others, the ones you turn to for a lifeline, withdraw.  Their reality is so different from your own that they don't know how to react and offer a platitude in response like "Oh, it's not that bad" when you can plainly see that the world is ending.

Depression sucks.
It sucks the air from your lungs, the joy from your heart, the color from your world.  It drains your energy, your dreams, and your hope.  It uses the aforementioned lies to coerce and compel, keeping you isolated from the rest of the world whether physically or emotionally.  Because who wants to risk subjecting others to this?

Depression lies...again.
It simply lies there, blanketing your heart, somehow secretly growing to shadow more of your life until you can't find where it started or where the exit might be.  And as it lies there lying to you, telling you that there is nothing but sadness and sorrow and there never has been anything but depression, it's hard to overcome.

Depression isn't just a disease that can be cured by popping a few pills or even just a better diet and exercise.  It's an insidious shadow that infiltrates your life and your home, tainting everyone you meet.

The worst part?
Depression is contagious.  If you care for someone who suffers from depression for long enough, their worldview colors (or rather, uncolors) part of your own.  You see shadows where there once was color, you feel dread where once there was joy, and sadness seems to permeate every corner of the room.
And it's not something people understand.  I repeatedly hear people remark that their therapist doesn't get it.
The person they pay hard earned money to (very hard earned if they are struggling to hold a job due to the tenacious grip of this condition), the person who is trained and certificated specifically to help people who are struggling heal...Doesn't Get It.

They just don't get it less than the rest of the world doesn't get it.  Or they're trained, and the world says they are supposed to help so the patient keeps going, assuming that the problem is them and not the help they've found.

Depression is lonely.  It's hard for anyone who suffers, and it's hard for those around them.  Because how do you live in a reality that isn't your own?  But how can you leave someone you love to brave it alone? 

Having a friend with chronic pain or illness is hard.
It's a challenge to hear and understand a reality that's so far removed from your own you can't recognize it.  And it's easy to misinterpret cancelled plans.  Whether they turn you down  a few times in a row, or cancel at the last minute, it's only logical to assume that one should "take the hint" and stop asking.  Most people never learn that the realization that you are no longer asking can trigger a spiral of depression.
It's not just that they cancelled.  Or even that they cancelled again.  It's the fact that they didn't call until the last minute.  They obviously aren't prioritizing you.  That's okay.  Whatever.  You have a life and other friends.  You don't see the cost that cancelling really had on them.  You have no idea what sort of energy saving practices they may have put into place to make this outing work, to save their energy so it wouldn't run out on you.  But somehow it ran out anyways.
You won't see them curse their bodies, or kick the wall.  You won't want to envision them lying at home, with a heating pad or a mug of tea and some saltines.  The reality is just too uncomfortable.  So you do the easy thing...you forgive them for letting you down and you go out and have a good time anyways.  And you stop calling, because isn't that what they want?
Having a friend with chronic pain is hard. 
Just don't forget that living with chronic pain is just as hard, if not harder (whether you're the sufferer or just a family member)

This thanksgiving season I'm grateful for all of those who accept what doesn't make sense and haven't given up on us.  I'm grateful for all of those who come in and out of our lives, believe it or not, you make our lives richer.  Even if we don't spend every waking moment together.  Or even the third saturday of each month.

I'm grateful for those who understand food allergies, or work with anxiety and depression, or just maintain flexibility without understanding the why and how.
And I'm grateful for those who don't...the ones who help remind me what reality is supposed to look like without being confrontational about it.

As much as I wish we could be "normal", I'm aware there is no such state of being.  We are who we are, our limits are what they are, and the only thing we can control is our reactions. 

Tuesday, January 17, 2017

I don't understand.

I can see that my daughter is bowed by a weight that she can barely hold.  But I can't see or comprehend or help her to carry it.
I can see the struggle as she stands at the threshold, looking through an open door at welcoming hands and faces, and can't move her feet inside.
I can't see or feel or touch the obstacles that she faces.
But I know they're there.  Just like I know there's oxygen in her air, that she needs food and water and when she should probably bring a coat, if not wear one; I know that she struggles with something bigger than anything I've had to hold.

And while I can acknowledge her challenge, I can't help.  I can't take the weight from her shoulders or bear the burden for her.  I'd give her my last crust of bread, throw myself under a train to save her life, and hand over the shoes off my feet without a second thought if it would help.  But when it comes to Anxiety, all I can do is watch, and wait, and smile and pretend I don't see the struggle.  Because the more I try to help, the heavier her burden becomes.

And in taking the less known route, the one where I acknowledge that the unseen is real and let her bear her burden however it is that the burden is least combersome to her, I take a new weight onto my shoulders.  Guilt, that I can't just make it go away.  Judgement, because it's a mom's responsibility to fix whatever is wrong.  Isolation, because though I've decided to talk about what I see, it still isn't something that polite society discusses.  And frustration, because the only thing anyone can say is that she needs help.  So I ask and beg and plead, and all I am told is that not everyone is ready to be a parent.  That this is something I need to help her with.  That it isn't okay for her to struggle.  And I pay for these tears, this non-advice, I smile and thank the doctors for what isn't useful.  I bow my head and leave the office no richer than when I came in but lacking in hope.

And I turn on the TV or the internet, and I seek more information, and I read and hear and find myself saying that you can't give up.  When life gets too big you need to ask for help and keep asking.  Talk to your doctor...because although mine doesn't help (and others have told me they have the  same experience) some part of me is hopeful that it's an isolated incident.  that the lies we perpetually tell ourselves will somehow manifest truth if we just keep repeating the same mantra.

Don't give up.

I can't bear the burden for my daughter.  But I can stand with her as she struggles, so maybe she knows she isn't alone.  And instead of being ashamed of her inabilities to fit into the normal scheme of things, I can be proud of how hard she tries despite her obstacles that the average person can't hope to understand.

The struggle is real.  She is the bravest soul I know, and yet the world may never see how much it takes out of her to show up and stand at the doorway and contemplate walking inside.

Tuesday, December 27, 2016

Have you ever noticed, that the most popular real life writing is all about success?  We seek mentors who have been there, done that and overcome the odds.  But life doesn't always tie up in a neat little ribbon, and there is no "happily ever after" because life goes on, a new chapter opens and we find new challenges waiting when the sun rises (As it's been known to do after setting)  Sometimes we find ourselves facing the same challenges again and again, ones we thought we'd conquered or new twists on the old problem, or brand new out-of-the-blue obstacles that we find ourselves backpedaling to adjust our course and consider how to address, let alone conquer.
Can we conquer the new obstacles?  Absolutely.

I've found that a community of understanding, sympathetic, been there done that kind of folks is really, really helpful in getting through the first hurdles of any challenge.  And reading about success is instrumental in envisioning a path toward one's own success and generating hope.  But what about problems that don't tie up in a bow?  There is no end.  While I may manage my food allergies/intolerances, they will always be with me.  And I'll have my ups and downs, good days and bad days, frustrating moments when I lose several promising foods, offset by elation from people asking for a recipe after a party.

The same is true for mental health issues.  Anxiety and depression are ever present shadows, sometimes made invisible by the noon-day sun, and sometimes chased away by bright lights and loud music, but always ready to slip out and surprise you when you least expect them.  Their impact can range from a startled moment to catch your breath to an all out run-for-your life kind of fear.

In other words, sometimes success isn't really a thing.  You might have more successes than failures, but that doesn't mean that you're done.  Problem solved.  Waltz off into the sunset without a care in the world.

We're all in the middle of a journey, and that journey will have ups and downs.  There's no doubt that there is value in hearing about the successes.  Knowing that others have those ups in their lives gives the rest of us hope and guidance.  But what about the downs?  Maybe it's just as important to hear something of the downs, so that we don't feel quite so alone.  In fact, maybe it's more important to hear about the lows so that we aren't stuck holding ourselves up to unrealistic expectations of never ending successes.

Sometimes life is hard.  That's true whether you have physical or emotional challenges, whether your challenges cross the line into disability status or are considered run of the mill (though no less valid or challenging).  When things get hard, remember that you aren't alone.  Success isn't defined by lack of challenges.  It's just a part of the journey.  Success means you don't have regrets at the end of the day, that you treat people well and did the best you could in each situation.  Ideally, your life will be full of many successes.  But no matter how many successes you enjoy, challenges will be present, too.  And they are just as important to share as the success stories.  Maybe moreso.

As the year draws to a close, I'm feeling inadequate.  But only because there are so many challenges we are revisiting or still looking to overcome.  I'm reminding myself that I'm not imperfect, but perfectly imperfect.  And if at times my struggles are more apparent than my successes, well, that's only because I'm at a rocky part of my journey.  That will pass, and what matters isn't the struggle so much as the way I address it and work through it.

In the new year, my goal is goig to be balance.  Rather than struggling with an unachievable "success", I'm going for a positive outlook.  More favorable outcomes than not, more light than dark, and a recognition that the challenges are just as important as the wins.

Friday, November 11, 2016

I've had a long, hard journey to get where I am now.  And I know there is a long journey left to come.  There is comfort in the fact that I'm not in it for a destination.  I'm no longer sure where, exactly, my journey intends to take me.  But I'm grateful for the experience along the way.

On this journey, I've met many individuals who are following a similar path.  They may have set out with different intentions, or had a different destination in mind than I did, but nonetheless we find ourselves following a somewhat similar path of learning and dietary adaptions and discoveries.  Symptoms overlap, research correlates to other research, experiences and diet may differ somewhat but the overall journey remains very similar.  

Dietary changes are hard.  Even harder is the learning process, learning not just to rethink what you eat but to reevaluate the entire learning process that got you to this point in life.  What you eat isn't something to take for granted.  There are so many variables in our diet, from pesticides to genetically modified organisms to preservatives to artificial flavors and colors.  Some are likely perfectly safe in small amounts, but our diets contain so many small amounts that the amount we ingest is no longer negligible.  Others are safe for some but may trigger problems for others.  And while there is limited research that helps us begin to understand what's going on, the far reaching implications are still hard to comprehend.  

Hey, I've been at this for over a decade and I'm still struggling to grasp the enormity of it all.  

What I haven't talked about in a long time is the very real danger of over compensating.  
I recently found myself engaged in conversation with another journey-taker.  Her daughter has been very sick, finally able to participate in life again after being bedridden for several months.  After giving up on western medecine, they discovered some food intolerances and an allergy to pesticides.  The trouble comes in over compensation.  While I have no doubt that the food issues are making a big difference, they are still looking for things to eliminate.  
The trouble is, you can't stop eating.  And a very limited diet is no help to anyone.  I know, I've been there.  It's so easy to do, especially as a parent who has kids that depend on me; and limited support (due solely to a limited understanding in how chronic digestive issues work rather than lack of care) I am constantly battling the temptation to stop eating.  So I get it.  
But I listened to the hoops she has jumped through, and watched her bristle as I gently suggested some less-herculean efforts that might yield a similar response.  So I bit my tongue as she described the emotional isolation and their solution (which sounds just as nasty as the original symptoms, involving a variety of detoxifying herbs and recovery systems after indulging in forbidden foods.)  And then she started listing more diets that they are slowly adding to the original, proudly increasing their limitations while increasing supplements to make up for what is being removed...
I had to say something.  And I had to share.  
Just because food is a trigger, dos NOT mean it is inherently evil.  
Gluten is bad for me.  What it does to one kid is flat out evil.  But in itself, it's just a grain.  

I don't believe that there is one diet that works for everyone.  I don't believe that natural foods that have been used by native cultures for generations are inherently bad for everyone.  And I believe that this truth is universal.  Different people have different needs, and while various diets work well for broad spectrums of individuals, it's only because their individual needs happen to overlap.  

That's right.  While I may think that the American diet has a surplus of wheat grains in it, I don't believe we should ban wheat.  And while I am concerned about any monocrop (especially corn); I also don't think we should ban it.  Any monocrop is dangerous.  And there are people who can't tolerate wheat, or rice, but might do okay with corn.  Everything in moderation.  

A healthy diet is a varied diet.  If you are still having symptoms after eliminating one food, please, please, please don't go overboard by eliminating every other food you think might possibly be suspect.  Listening to this one particular case, I couldn't help but wonder if they'd tried a moderate route.  Just give up the gluten and stick to organics for 6 months.  6 months is a very long time in the life of a 10 year old.  But it takes a very long time to heal from malnutrition caused by food intolerance.  It takes a very long time to heal both physically and emotionally from long term digestive problems.

I understand the desire, the desperate desire that borders on need, to feel healthy.  But total elimination for life is not a good answer.  Elimination diets work by eliminating the suspect foods, and then slowly reintroducing them while watching for symptoms.  It's a challenge as a parent because a) you want to be available and dependable to kids and b) you don't want your kids to suffer. Life goes on, and when kids are young it goes very, very fast.  There isn't always a tomorrow because by tomorrow, your kids may have moved on.  But patience is still key.  Give the gluten free (or corn free, or dairy free, or all organic) diet a chance to work before choosing another restriction to add to that one.  Consider carefully re-introducing eliminated foods if you don't get the results you were looking for.  There is no one size fits all diet.  There is no magic cure.  It took time to get this miserable, it's going to take time to heal and relearn what "normal" looks like.

Most of all, it takes a long time to rebuild trust with food.  It's something that is supposed to nourish us, but when it bites back, it's hard to risk eating again.  It's still essential.  

Tuesday, November 08, 2016

Recently, an author I follow posted a lovely infographic (which I don't know how to snip and share appropriately) about how small amounts of allergen can be fatal.  She mentioned living in fear of something so small taking your life.

The thing is, I don't want to live in fear.  Knowledge is power, and fear is sort of an anti-power.  It's a weapon used against the masses, and it's getting out of hand.

Yes, I have allergies.  And yes, a very small amount of allergen can make me miserable.  And yes, I've had breathing issues and I've been told anaphylaxis may be an issue.  But does that mean I have to live in fear?

I could.  I could bury myself in my room, and never leave.  I could stop eating anything that didn't come from my garden.  I could let it escalate, and grow, until I was paralyzed.  It would be an easy thing to do.

But you know what I do instead, even though it's hard?  I go to the store, week after week, and trust companies not to change ingredients without telling me.  I visit people's houses, sometimes in a mask, and hoping they don't react poorly.  Trusting them not to have just popped popcorn or used cornstarch or overused cleaning supplies.  Eating, in general, is hard.

But I do it.  A lot of people I know do the same thing.  Throwing themselves out there, trusting food.  Sometimes successfully, sometimes not.  The more "nots" that we have, the harder it gets but we persevere.

Because what else are you going to do?  You need calories, and growing them all ourselves isn't an option.  It seems silly to those who have never had reason to mistrust food.  But after being burned repeatedly, it takes someone strong to keep going out there and trying.  That's why we need transparency in labeling.  That's why we need clear food labels that tell us what we're buying, how it was grown, and clear answers about packaging (Which can be dusted with cornstarch, for those not in the know).

We can't eliminate all allergens.  But we can make all allergens easier to live with.