Text below the jump:

Hey, it’s Leah of Spoon Shares. I started a vlog series about feeding tubes about 2 years ago, and did about 4 videos over 6 months before I stopped because…I didn’t have the energy and I kept putting it off. So now it’s two years later, and I’ve somehow still gotten some really nice comments and subscribers, despite the fact that I haven’t posted in two years, so I’m going to make an effort to start these videos again. I no longer have a feeding tube, I had to switch to TPN, which is IV nutrition through a central line, but I will still talk about my experiences with the feeding tube as well as TPN. And I’ll talk about other chronic illness related stuff, either stuff I’ve learned living as a professional patient that I think may benefit someone to hear, or stuff to help you explain a difficult concept to friends or family members. I’m not going to try and do one a week like I tried last time, because I know better now. But I will do what I can. And that I think brings me to the topic of this video, which seems a good place to re-boot this vlog series: productivity.

Productivity with chronic illness is hard. No matter what level of functionality you have, you know it’s not as high as it would be if you weren’t sick. And that’s really frustrating. And because our society is so productivity based (think of how often we hear the phrase “productive member of society”) it can feel like you’re a useless drain on the resources of those around you.

So in order to cope with that feeling of doing less than you would like to do, whether it’s because you need more days off or because you can only work part time, or because, like me, you can’t work at all, you have to throw out that “productive member of society” narrative from your world completely. Just chuck it out the moon door along with Lysa Arran (spoilers). 

Instead, think about the people you value in your life. Your friends, your family, your significant other, your furry pets. Now, do you value them because of what they do and what they create, or because of who they are? Creating stuff is awesome, don’t get me wrong, and part of the reason I knit so much (I knit a lot guys) is to feel like I am adding things tangibly to my world. Also because it’s a great way to cope with symptoms while stuck in bed. But it doesn’t define your worth as a person.

So go easy on yourself, and remind yourself that you’re living in a body that makes even the most simple tasks feel Herculean. And when you’re beating yourself up for not being able to do something because of symptoms, remember this sentence a friend said to me when I had a migraine flare when trying to get ready for a friend’s wedding: “You will do what you can do, and whatever that looks like will be okay.”

The post Vlog: When Chronic Illness Gets in the Way of Productivity appeared first on Spoon Shares.

If you want to know the roots, it’s pretty simple. I was born a crazy, obsessive horse lover. Zebras were like the exotic, adventurous versions of horses. My feral, child self adored them.

Things compounded when, at age seven, I was bitten by a zebra.

No really, I have photographic proof.

I was in Texas. Y’know, where these kinds of things can happen. My family and I were in a wildlife drive-thru, I fed the zebras out of my hand, delightedly and bountifully. I ran out of food, my shirt was the same color as the food bag, and, well…the pictures explain the rest.

It’s been a family story that I’ve delightedly told at every ice-breaker meet-and-greet for most of my life. As such, a lot of gifts I receive are decidedly zebra themed, such as my favorite sweater I wore to my fangirl-dream-come-true at Hamilton.

So the zebra was always a fun, somewhat quirky symbol of myself.

I got my diagnosis of Ehlers Danlos Syndrome (a genetic disease I’ve unknowingly had all my life) around January of this year, only to discover that the symbol of the EDS community is no other than…the zebra!

Not only is the zebra a symbol for EDS, it is a well used, well loved symbol. EDS awareness banners, bracelets, memes, etc are always covered in zebra stripes. EDSers refer to themselves as “zebras” or “one of the herd.” It’s actually a lot of fun and a very cool symbol to have for your illness!

It now seems that my early-age zebra bite was prophetic. Or a heavy handed use of foreshadowing. Or the zebra infected me with its vampiric bite in an effort to turn me into one of its own.

I could go all days with these.

But jokes aside, finding out that the zebra was the symbol of my permanent, disabling illness, was not only deeply ironic, it was a little upsetting to me. Zebras were a bizarre, fun, personal flag of mine. Now it felt like it had been co-opted by something I felt very ambivalent about. Yes, having an official diagnosis was incredible, and having an explanation to my weird, life-long body issues was a tremendous relief (you mean my ankles didn’t just give out and make me fall because I’m unbelievably clumsy? And my unexplained back pain wasn’t all in my head?), but it’s still the thing that causes me to feel sick and debilitated every day of my life. I didn’t want the symbol of that to be my beloved zebras.

Here’s the thing, though. EDS isn’t new to my body, just my knowledge of it is. I have always had this disease, just like I have always loved zebras. Whether I knew it or not, I have always been an EDSer, and I have successfully (to varying degrees) lived with it my entire life.

As much as we like to say “I am more than my illness,” and “my illness doesn’t define me,” to some extent, my illness does define me. Yes, I am more than just my illness. I am also nerdy, and goofy, and I love animals, and I have a random obsession with English Tudor History. But I am also defined by my illness. My current lifestyle, my likes, my daily habits, my values, my relationships…those have all been determined, by some measure, by my illness. And, I guess, to some extent, it always has been. I have always had a lot of determination and resilience, and I think that is partly because I’ve lived my entire life in a body that was always somewhat dysfunctional. I learned at a young age how to work hard at a thing that didn’t come as easily to me as it did to other people, even if that thing was as simple as “walking.” There were certain things growing up that I didn’t pursue or enjoy because my body didn’t allow me, and that has become exponentially more true in the past four years, since my illness has become more acute. A lot of things about me have changed in that time period that I don’t like, for instance my self-confidence and self-competence, but some things have changed for the better. I know I am a more patient, more empathetic, and more appreciative person than I was before becoming acutely ill. So for better or for worse, every part of me has become informed by being chronically ill. That doesn’t make me any less “me,” it just make my illness one of the many things that completes the “me” package — but it’s a very hefty part of that package.

So the zebra is still a symbol of me, and the fact that it also symbolizes Ehlers Danlos Syndrome just makes it even more “me.” Sure, that makes the symbol more complicated than I had realized as a kid, but life is more complicated than I realized as a kid. And now I get to share this symbol with a lot of kickass EDS warriors who share and understand my struggles. Besides, even if we are all part of the same zebra herd, we still have our individual stripe patterns that keep us our own unique persons.

I am an EDS zebra. I always have been and I always will be, even if a cure was discovered tomorrow. I still love my (literal) zebras as much as I still love my old self…I just understand them both a lot better now. And that remains something to celebrate.

About the Author:

Leah is a 25 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post On Zebra Stripes and Disabled Identity appeared first on Spoon Shares.

Okay, I’m not a poet, and I certainly know it. So here’s a picture of my adorable dogs to make up for it.

But there is a point to my sappy spoonie story-time, and that is a message I want everyone with chronic illness to realize, that I have slowly realized in my past four years with chronic illness.

Yes, it is heartbreaking, frustrating, painful, and sometimes terrifying to have a chronic illness.  The every day things healthy people find so simple are often insurmountable obstacles for us. We mourn our old selves, our old lives, and the goals and life paths we wanted for ourselves that we can no longer achieve. This is, needless to say, not the life we envisioned for ourselves.

But that doesn’t mean we can’t have a wonderful life.

I didn’t get to graduate college, I can’t work, I can’t do more than a few hours of real activity without needing to lay in bed recovering and miserable for several days afterwards.

But I can text with my friends and family. I can knit and crochet and give gifts to people that makes them smile. I can watch National Lampoon’s Christmas Vacation with my family and laugh until the room spins. I can play board games with friends and giggle about how my short term memory is shot from the extra activity, and not remember what the hell was on my playing card that I checked a minute before. I can lay down and watch Doctor Who with a dog in my lap and then discuss it to death online with my friends.  I can sing songs (badly) about poop with one of my best friends, and laugh about our dysfunctional bodies.

Yes, it can be sad that that is all I can do, and we live in a world where we feel pressured to do more and achieve everything that is humanly possible. But when all that is humanly possible is making a sweater for my mom, that may not be such a bad thing. My life is not what I thought it would be. It is not what I wanted it to be. But it can still be a good life. I can still take joy in the people who support and love me, and the small, seemingly inane things that I am able to enjoy doing each day.

My body may be crap, and it might always be crap, but my life can be good. Really good. If I accept the limitations and the realities of the life my body has created for me. It’s a smaller life, and it’s not good every day or every minute. But no life is. I spent a long time relying on the idea that one day this “sick-chick-life” would end and I’d start my real life.

But this is my real life. And maybe one day I will magically recover and everything will be different, and I can have the life I envisioned. And don’t get me wrong, I’ll never stop hoping and fighting for that.

But if it doesn’t, I know I’ll be okay. And you will, too. Because once you let go of the idea of what your life is supposed to be and start embracing what it is at this moment, you can start to enjoy it.

And then you can have a truly wonderful life.

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post A Message to All Spoonies: You Can Still Have A Wonderful Life appeared first on Spoon Shares.

Hey everyone. So, last February was the end of a very long winter for me. And facing similar struggles was my good friend Catherine Richardson. Catherine and I talk pretty much everyday, because, well, she’s an awesome sauce spoonie and always fun to talk to. We make jokes about our confusing bodies and share our constant poop struggles (true friendship, guys). We’ve never been in the same room, or even the same country, but when you can casually ask somebody, “How’s the poop coming?” that starts to become a lot less important.

I’m spending a lot of this post talking about poop, which actually has nothing to do with what I actually want to talk about. I could blame the brain fog here, but I think we all know by now I’m just a senile old woman stuck in a 25 year old body.

So one frustrated night, when I wasn’t able to get out of bed and Catherine wasn’t able to get any of the doctors appointments she desperately needed, we were honest. More honest than I’m usually willing to be with myself, much less the faceless internet or, even scarier, my loved ones. We had a conversation about the dark struggles of having a chronic illness, and what it feels like to have our pain so often dismissed because “we’re not dying.” Don’t get me wrong, terminal disease is a whole other bag of stress and pain that I am lucky to not have to deal with. But that phrase is so often used to dismiss the struggle and pain experienced by people who feel sick almost every day of their life. So we wrote a poem to put words to the struggle that hides underneath the mask of “not looking sick.” It didn’t go viral or anything, but we had a lot of feedback about the chord it struck with those who did read it. So we felt it was a story that should be told. And who better to tell it than the people who write about it regularly? So we gathered some of our chronic illness blogger buddies, and we made this video. To read a much more articulate summary of my feelings about this video, read Catherine’s post here.

We don’t look sick. But we are. Which means that the only way to understand us is to listen to us speak. So that’s what we’ve done. I encourage other people with chronic illness, or their loved ones, to share their stories as well in the comments of this post or the video! Or, better yet, write a post.

A heartfelt thanks to all the bloggers who contributed. This is no small task for someone who has to deal with sickness on top of normal life, so I’m just thrilled and grateful for everyone’s enthusiastic and willing hard work on this project. Below the video are the links and bios of all the fabulous people who made this project possible.

This is our #invisiblefight.

In order of appearance:
Catherine Richardson – Born and raised near Vancouver, Canada, Catherine is in her mid 20’s blogging and crocheting her way through all the unknowns of being a medical zebra and finding lots of opportunities to give her sense of humour some exercise along the way.
Blog, Facebook

Leah Holstein – A suburb-of-Philly native, Leah is a 25 year old tubie with gastroparesis and dysautonomia. She likes horses, Disney, and anything snarky.
Website, Twitter

Katie Brook – Living in Yorkshire, Northern England, Katie uses her love of writing to raise awareness about Myalgic Encephalopathy (ME/CFS) with the hopes of helping fellow sufferers feel a little less lonely along the way.
Blog, Twitter

Amanda Bryant – From Virginia Beach, Virginia, at 25 years old Amanda suffers from a severe form of the invisible illness gastroparesis. In spite of things that try to knock her down the daily, she is a newly-wed with an amazing 8-year-old stepdaughter. Her and her husband also own a business that does custom reclaimed pallet and barn wood furniture.
Instagram, Fundraising Page

Sarah Frison – Sarah is an integrative nutrition health coach from Belgium. As a result of living with gastroparesis, dysautonomia and gluten intolerance, she now uses her health coach and pastry chef training to share recipes, tips and tricks to help others live as well as possible despite their own dietary restrictions.
Nutrition Consulting Website, Twitter

Sarah Rush – From Vancouver, Canada, 21 year old Sarah lives with Ehlers-Danlos Syndrome and many other complications and conditions that come along with it. She is a psychology student who loves music, photography and any opportunity to raise awareness.
Facebook

Samantha Brink -I’m a book worm trying to make my mark in the non-profit world. Humor helps me battle back my anxiety and cope with a mish-mashed disorder, which I’ve come to understand as “slightly broken but I’ll never surrender.” Blogging allows me to unleash my quirky side and share some of the madness from balancing my medical needs with my career, grad work, and family.
Blog, Twitter

Stephanie Torres – While Kansas will always be home, Stephanie has lived in Washington State for the last 14 years with her husband and 2 fur babies (aka her “angels”). Diagnosed with gastroparesis and dysmotility in 2008, she had no idea how much her life would change. By 2011 she required a feeding tube and in 2013 had no choice but to start IV nutrition. Her dreams may need to be altered but she continues to look for the silver lining, hosting awareness events, working as an advocate for others on nutrition support, and making fun and laughter a priority.
Blog, Facebook

Lisa Tschetter – Living just outside of Vancouver, Canada, Lisa lives with POTS and gastroparesis. She has taken everything she has learned about coping with POTS and created a website to help others living with the same condition get a handle on their own symptoms. She loves playing the piano and has recently become hooked on crochet.
Blog

Chanel White – From Seattle, Washington, Chanel is living with a terminal diagnosis of systemic scleroderma and a whole host of other complications. However, despite the fact that she is dependent on a feeding tube, a central line and supplemental oxygen, Chanel focuses on living as fully as possible and acts as a voice for others with scleroderma and invisible illness through her writing and speaking engagements.
Blog, Instagram

Michaela Shelley – Michaela is your not so typical high school senior living in South Carolina. She is fighting Mitochondrial Disease, Dysautonomia(POTS), and Gastroparesis. Living with multiple chronic illnesses has changed her life dramatically but it’s made her see a different view in the world and for that she is very thankful.
Blog

The post Our Visible Fight For Invisible Awareness appeared first on Spoon Shares.

But here’s the thing, I’ve been sick for over three years now. And Jon Stewart, the laughter you gave me… well, it may not have been my best medicine, but it certainly has been my favorite.

Ever since Jon Stewart announced his departure from the Daily Show, there have been countless think-pieces about his effect on political discourse (my textbook in high school actually referred to him and Stephen Colbert as “the watchdog’s watchdog”) and how we digest the news. But I feel the need to share the effect he and the also recently departed-but-soon-to-be-reincarnated Stephen Colbert had on me as a chronically ill person.

Three and a half years ago I came down with a case of mono that turned into a lifelong chronic illness of gastroparesis and dysautonomia. And before my diagnosis, medications, pacemaker, and feeding tube, I was a serious mess. I spent most of my time curled up in a ball on my parents’ bed, watching TV and trying anything to distract from my all-consuming constant nausea.

And the best distraction I had was the Daily Show and Colbert Report, airing Monday through Thursday at 11:00 PM. Nighttime was usually one of my hardest times of the day symptom-wise, but somehow Jon and Stephen made it more bearable. They made me laugh. They took things in the news that were sad or frustrating and made them funny. I honestly hated weekends because those were the days without these two goofballs to take my mind away. I would jokingly shush my mom at 11:00 and say, “my friends are on!”

Okay, this is sounding more than a little pathetic. But, at the time, I was pretty pathetic. And The Daily Show and The Colbert Report were bright spots for me in a dark time.  A lot can be discussed about the politics of these shows, where they stand in the world of news and politics, but, for me, they were entertainers. They were comedians. They made me forget my problems. They made me laugh. That, to me, was no small thing.

Their ability to take “bad news” and spin it into an ironic and genuinely funny joke, for me, was a minor miracle. I took my cue from them and used the same tactic in my daily life. It taught me to laugh at ridiculous things like my hospital gown pulling a Janet Jackson while I’m strapped to the table like Frankenstein’s monster, or being accidentally high in my friend’s wedding. Because in bad situations you gotta laugh or cry, and laughing is a hell of a lot more fun.

That frame of mind has helped me more than I can really describe. It’s kept me smiling through all the bad stuff. I’m grateful for my pills that help contain my symptoms, the surgeries that helped bring me nutrition, the doctors and tests who diagnosed me and look after me, but those never brought a real smile to my face. These “fake news shows” did.

“Laugher is an instant vacation.”  So, thank you, Jon Stewart and Stephen Colbert, for giving me that break when I so desperately needed it.

And to show my gratitude, I will forgive you both for killing my dream of working on one of your shows.

A fond thank you and farewell, Jon Stewart.

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Jon Stewart and Stephen Colbert Were My Best Medicine appeared first on Spoon Shares.

I wish I was that spry.

I use a shower chair, a wheelchair, occasionally a cane. I take a beta blocker, I drink prune juice, I go to bed early, I don’t drink alcohol, I wear reading glasses, and, most of all, I spend the majority of my time knitting.

But knitting is honestly one of my best and favorite coping techniques for living with chronic illness. Here’s why! (And you can pretty much substitute any kind of crafting activity in for knitting.)

1. I feel productive

A lot of people with chronic illness struggle with not being able to work, or at the very least, not being able to work as fully as we would like. In a culture that stresses productivity as a measure of worth, this can feel very frustrating and demoralizing. But when I can see something physically grow before me because of my own effort, it’s very rewarding and comforting.

2. It gives me a way to say thank you and keep in touch with loved ones

To the people who have helped me and stayed supportive throughout my illness that I don’t get to see as often as I would like, it feels good to give them a token to say “thanks,” or “I thought of you,” or “hey I made another hat I don’t need and you’re the poor sucker who dropped by to see me today.”

3. Entertains me without costing spoons

There are many many days where I, like many spoonies, just can’t do anything. And because of that, I’m bored out of my mind.

But knitting is not mentally or physically taxing, so I can almost always knit. Of course, if you have fibromyalgia or some sort of illness that involves arthritis, knitting might be a little harder. Although, my mother has arthritis in her hands and finds she can knit as long as she uses larger needles. But if you find you have a lot of hand pain, you may benefit from another, less dexterous crafting activity.

4. Distracts Me

You know when you just feel crappy, and you can’t get any relief, and you’re just restless and irritable? Knitting, for me at least, is a way to distract myself with a relaxing, repetitive motion, that doesn’t exert energy, and allows me to think about something other than my nausea/cramping/inability to decide what temperature I am.

I actually notice I get grumpier if I injure my hand and can’t knit for a day. It really does help!

5. Actual Health Benefits!

Studies have shown that knitting, crocheting, quilting, and other things of the like actually have real health benefits! They suggest it can improve brain function, help mental wellness, and even lower blood pressure and heart rate! I actually wonder if part of the reason I like knitting so much is because it helps control my irregular heart rate with its calming, repetitive motions. But that might be pushing it a little too far. Who knows? I just know I like it and it helps me a lot.

Don’t know how to knit? Well, that’s why I love the internet. There are YouTube videos to instruct you on any kind of crafting you can think of. I would link to a knitting instruction video on YouTube, but there are so many that it’s really best to just go to YouTube and pick the one that looks best to you. That way you can learn in the comfort of your own home/bed and don’t have to even get up! I also suggest Ravelry for finding a ton of really great free patterns. Knit Picks is my go to for quality, affordable yarn. Amazon sells some good starter kits, but you can also go to your local crafts store when you have enough spoons.

You should also check out my good friend and spoon shares contributor Catherine’s crochet etsy shop if you want to get motivated on the things you can make, or if you want to buy something super cute! She also wrote a great interview about how crochet has helped her.

And for anyone who thinks they’re too young or cool or manly to knit? Just remember, if it’s good enough for Albus Dumbledore, it’s good  enough for you.

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Spoonie Coping Tip: Knitting, Crochet, and general crafting! appeared first on Spoon Shares.

But what, may I ask, is dying?
Because I don’t think this is living.
Laying in bed.
Staring at the TV, but not really watching.
Sorting pills.
Scrolling through tumblr and twitter
Just to know there are others like me.
Making plans
I can never seem to keep.
I’m not living. And what is the opposite of living?

“At least you’re not dying.”
But I am.
I am dying on the inside.
Dying to live my life.
Dying to be independent.
Dying to work.
Dying to go out for drinks with friends.
Dying to hike a mountain
Or ride a roller coaster
Or spend all day fetching coffee for a boss
Bemoaning the life of the underpaid millenial
So I can climb the ladder of success.
We are dying to have new stories to tell
Because we’re running out of ways to say
“Yeah. Still sick.”
With a smile.

Every day we die in so many different ways.
And we know it will never stop.
I will never wake up without pain
Without fear
Of how I will support myself
Or guilt
Because others must now support me.

And I cheer when I see
Charity drives, awareness walks, new medications
For scary diseases
That I am lucky to not call my own.
And yet,
A small, unsettling, unwilling voice
Whispers
“When will it be my turn?”

We’re not dying.
But sometimes
That’s the scariest part.

We don’t mean to be harsh
We don’t mean to be morbid
But this is our truth.
This is our reality.
And part of that reality is softening our truth
For you.

But today
I just don’t have the energy.

This isn’t a battle we can win.
I’m not “strong enough to beat it.”
My illness doesn’t care how strong I am
How stubborn
How weak
How tired.
Illness doesn’t discriminate.
It gets us all just the same.

I’m tired of dying. And sometimes
I fear
That I will be dying the rest of my life.

Look, I know what you’re thinking.
But these words don’t come from a place of depression.
These words are my reality.
And no medication can change that.

I don’t need fresh air.
I don’t need a new diet.
I don’t need a new supplement.
I need funding.
I need research.
I need a damn miracle
Medical breakthrough.
I need a break from this broken body.

But I’m stuck here.
A prisoner
With no chance of parole

Please don’t tell me it could be worse.
I know
It could be worse.
But it could also be better.
So much better.

-The Invisibly Ill

About the Authors:

Catherine is a 23 year old spoonie living just outside of Vancouver, Canada. She has gastroparesis, a feeding tube and is currently TPN dependent. She spends most of her time crocheting like the old soul that she is and blogs at Finding my Miracle.

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.   

The post Invisibly Ill: An Awareness Plea appeared first on Spoon Shares.

…and I jut laughed. Nope. Nopity nope nope nope. Because a a little while ago, I unabashedly gave up. And I thought I’d share the experience with you.

Look, I’m a pretty positive person. It’s the reason I started this site. I firmly believe in a positive, solution-oriented approach to handling your chronic illness. I believe in remembering the many things for which I am thankful, looking at everything through a humorous lens, concentrating on things I can do to help myself and others, and distracting myself with more pleasant things like puppies and Parks and Recreation.

But a little while ago none of those things were helping me. I was exhausted. Not just exhausted like so many spoonies are exhausted…

We need a new word for spoonie related fatigue. A separate word to classify it as different than just being tired. I propose blerfgamabzfgda

— Leah | Spoon Shares (@spoonshares) February 6, 2015

…but I was mentally exhausted. I was tired of pretending I felt better than I do. I was tired of ignoring the nausea, muscle weakness, bloating, lightheadedness, brain fog, and pain that is now a part of my everyday life. I found I could no longer push away the thoughts of regret and sadness for the life I used to live that was now gone from me. It was like all the tolerance and thick skin I had developed over the past few years had just cracked and broken off of me. I was done fighting. I just wanted to lay in bed and stare blankly at a YouTube video that I wasn’t really watching. I didn’t even want to cry…that was too much energy. I just didn’t want to fight anymore. So I just let everything overcome me and became a lump of nothing.

And you know what? It sucked. SUCKED. The pain I feel every day was nothing compared to the pain I felt that day that I just let go of everything and let myself fall into that scary pit of despair.

As a person who likes to downplay and joke her way through her illness, I get a lot of the following:

“You’re so strong. I could never handle things the way you do!”

“You’re such a trooper. It’s so inspiring.”

“People complain when they can’t find a parking space, I can’t believe you stay so positive.”

Let’s be clear. I still complain when I can’t find a parking space.

But if I complained every day about my chronic illness and the grief and pain it’s caused me? I’d drown.

The Day I Gave Up was an awful day for me. As emotionally and mentally exhausting as it can be to keep fighting through this mess of an illness, it’s nothing compared to the pain I feel when I completely surrender.

So I don’t keep smiling to be an “inspiration.” And I will freely admit that it is really hard to keep fighting that overwhelming tidal wave that is chronic illness. But the secret that nobody says out loud? I am not stronger than anybody else. I fight the tidal wave because swimming with tired arms is better than being washed away with the storm. That’s just a natural human instinct. I don’t laugh about how my esophageal manometry was basically nose r*pe because it’s good for other people, or because I’m made of sparkly sick-people-dust that increases my tolerances for absurd situations. It’s just how I’ve adapted to my new life. And as much as it makes me want to scream and throw things (and I do…an apology to all my shoes), if I completely surrendered to the gloom and doom, it would all just suck 1000% more.

So, yeah. Sorry, inspirational internet meme. I did give up. If only for a day. But hell, you gotta hit rock bottom every once in a while just to know why you keep white knuckling the crevices.

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post The Day I Gave Up…and Why I’m Not Going to Again appeared first on Spoon Shares.

A lot of people appreciate their sick days, taking the time to pamper themselves and binge-watch television while they get over their cold. When you’re taking sick days or rest breaks on the regular, though, the normal sick day activities get old very quickly. Plus, you’re probably dealing with something a little more intense than a case of the sniffles.

With that being said, it’s incredibly important to pay attention to what you do with your time. You’ll want to pick activities that match your various energy levels while entertaining you, distracting you from your symptoms, making you feel productive, or any other need you have at the time.

If you’re a list-maker, make a list; if you’re a talker, talk through your options with a friend or family member—however you do it, just be sure you have a list of ideas to draw from as needed.

Here’s an example of my own personal list:

No Spoons

• Snuggling
• TV
• Easy books
• Music
• Podcasts
• Reddit/Tumblr
• YouTube
• Napping

Low Spoons

• Snuggling
• Writing
• Crafts
• Art
• Video games
• Chatting online
• Reading
• Self-care/pampering

Distraction

• TV
• Writing
• Crafts
• Art
• Video games
• Chatting online
• Reddit/Tumblr
• YouTube

Productivity

• Writing
• Crafts
• Art
• Video games
• Cooking
• Small chores
• Answering emails
• To-do list items

Take some time to think about what would make your list—it’ll help you keep the boredom at bay, and keep your spirits up when you’re stuck at home. Best of all, when you’re not sure what to do with yourself, you’ll have a whole list to go to!

By the way, blogging is something I can’t recommend enough to new spoonies. It’s a great way to talk through what’s going on in your life and connect with others with similar experiences, so give it a shot if you’re so inclined.

Online Communities

A lot of spoonies feel a bit isolated, because they don’t have anyone to talk to who has first-hand experience with chronic illness. Luckily, we live in the age of the internet, which allows folks with even the rarest of illnesses connect. Online communities can help you research your symptoms/conditions, get emotional support, blow off steam, and feel less alone—so if any of this sounds good to you, get yourself to a computer and start making friends!

Tumblr

This site has a huge spoonie community, with personal blogs, humor blogs, informational blogs, and everything in between, and is a great conversational medium (think a long-form twitter). Search for the tags #spoonies, #chronic illness, as well as the name of your condition (such as #fibro, #pots, and #eds). Also check out users spooniestrong, whatshouldwecallchronicillness, and (can’t help a little self-promotion!) spoonie-living.

Twitter

This is a short-form conversational medium. Check out the same tags listed under Tumblr, and get tweeting!

Reddit

This site is more of a forum, and there are plenty of communities (subreddits) dedicated to various conditions—some more active than others. You can use the search bar at the top right of the homepage to search for posts or subreddits.

Facebook

There are bunches of spoonie communities on Facebook, so do a little searching and you’re sure to find what you’re looking for. I highly recommend “The Pillow Fort – Pillow Fighters Club,” which is a group for young spoonies with one important rule: positivity only.

Condition-specific websites /support groups

Many condition awareness websites have a forum available, and plenty of forums have been set up independently, too. Do a little searching for your condition, and you’ll find plenty of resources.

Blogs

Although standard blogs are a little more one-sided, they’re still wonderful places to get a pulse on your condition’s community and find other blogs and communities to join.

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Coping Strategies & Online Communities appeared first on Spoon Shares.

Chronic illness is BIG—really big—and as such, can wreak some serious havoc on your mental health. A good attitude certainly isn’t going to cure you, but it’ll help you stay engaged with your life and treatment, and make everything a lot easier. So, as you work on physical health problems, be sure to take some time to tend to your feelings as well.

If you’re sick enough to have sought out this guide, please start by looking into your options for counseling. A lot of people assume that counseling is for people with diagnosed mental conditions, but that’s not true—it can be helpful to anyone who needs to think something over or process something that’s going on in their life. Setting up regular appointments with a counselor (at least for a bit) can be very helpful; it forces you to “check in” with yourself at regular intervals, and gives you a space where you can focus on problem-solving of a more personal and internal nature.

There are many mental health services available regardless of your financial situation, so put out some feelers and see what you can find for your particular needs. Calling your health insurance provider can help you determine whether counseling is covered, and many counselors offer sliding-scale rates if you need to pay out of pocket. Keep in mind that if you’re in school, there should be a counselor on campus that you can work with at no charge. Finally, there are quite a few more informal options available online—check out the Resources section at the end of this zine for more information.

As for what you can do independently, be sure to research “self care” and put together a list (mental or written) of things you can do to take care of yourself when you’re going through a rough patch. This is a great concept that’s really becoming popular right now, and there are lots and lots of ways to practice it. Definitely take a look!

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Mental Health appeared first on Spoon Shares.