Life Hacks for Spoonies

My name is Fox. Yes, it's on my birth certificate. Life hacks and self care problem solving for humans with chronic conditions. She/They - ♢ Fibromyaglia ♢ Depression ♢ Anxiety ♢ Interstitial Cystitis ♢ Migraines ♢ PTSD ♢ Synesthesia ♢ some sensory processing stuff

[spoonhacks]

One Urban Tribe

Welcome to One Urban Tribe! Shop for incense, handmade jewelry, crystals, art, and handcrafts from a variety of small, independent makers.

To honor those who stay home during this pandemic, for those who are high risk, and for those that were staying home before it was cool: I made you this. My store’s website is finally live! I’ve always wanted to bring a little joy and magic to your home. I believe in making the places you spend time in sacred in a personal way, and I’ve created and curated this selection of beautiful objects for that purpose. So if you like collecting crystals and pretty rocks or handmade jewelry, appreciate art, or enjoy incense, please come take a look and see what I do for a living.

[spoonhacks]

Dear disableds, The difference between you and others, is that they are afraid of being uncomfortable. But not you. This is your wheelhouse. Lean in, and you will go far.

[spoonhacks]

This post seems to be misunderstood so perhaps an example will clarify: I was afraid to give birth. I was anxious for months. I was afraid of the pain, of being in the hospital, of being medicated... all of it. But when the time finally came, I realized that I had the skills I needed to get through it. I already knew pain. I knew what it was like to endure it for hours, how to pace myself, how to get minute to minute. I knew how to keep my head above it. That next hard push? I knew it would be painful, but I was emotionally equipped to accept that as I did what I needed to do. I could let it go. I could tell myself, “Just get through the next contraction. It will hurt, but then you can breathe.” (If you are too passive during birth, you can run into complications, and fear can impede the birthing process). I knew that unlike the pain from fibro, this pain would end, and that I could master it for as long as it lasted. And I’m grateful that I didn’t have to figure all that out for the first time in the moment. And so, I apply that mindset-- the one that gets me through pain-- to other things I need to get through. When life gets hard I know how to get from moment to moment. I can keep my head when life requires patience and perseverance. I can accept the discomfort of the moment as something that I know how to survive. And if you don’t have to fight that fear, if you don’t have to fight the discomfort itself, than you have a lot more strength left to focus on the matter at hand. When I was setting up the new shop, the amount of work in front of me was intimidating. Some of it was a repetitive marathon of painting and prepping, and other parts were confusing because it was complicated and new (and more math than you might expect dealing with a floor plan). But I know now that I can endure long, uncomfortable things by taking it one moment at a time, so I was able to reach past the fear and be the best version I myself as I faced the challenge. “Just one more push, and then you can breathe.”

[owlet]

person first language aka “i just see you as a big ol wheelchair so i need to constantly remind myself about your humanity just in case i forget”

[spoonhacks]

This is how I feel about it. “Disabled” is not a dirty word. I’d rather it be acknowledged than hush hushed.

[spoonhacks]

Dear disableds, The difference between you and others, is that they are afraid of being uncomfortable. But not you. This is your wheelhouse. Lean in, and you will go far.

[spoonhacks]

Childbirth Myth Busting

cw: a little bit biological 1. “I’ll be all stretched out down there after.” Hahahaha. Bullshit. I had the opposite problem! After using dilators, I am ok now. Results will vary, but if you’re experiencing uncomfortable changes that last longer than a few weeks, talk to your doctor. You may benefit from pelvic floor therapy. Your body goes through incredible changes during pregnancy and equally incredible healing after. The patriarchy will have you believe you will be a less desirable partner now or that you will “feel different” to a man. This is the same stupid myth that tells young girls they will get “all stretched out” after too much sex or too many partners. All lies. That thing is so flexible! Your body produces hormones during pregnancy and birth to make your vagina and vulva even MORE flexible. Ignore talk about “the husband stitch” or “an extra stitch,” you don’t need one and either does your partner. If your doctor does this to you, especially without telling you, that is medical malpractice. 2. “Moms bond instantly with their baby.” My first thought seeing my daughter shoot out of me was something like “thank god that’s over.” For a few seconds I was so focused on getting through the birthing part, I nearly forgot that there was a baby at the end of it all! It’s true that the first time I held her was the highlight of my life. But I was also exhausted and the entire thing was super surreal. Some parents with very difficult/traumatic labors take longer to process everything. It’s important to keep in mind that your baby is a complete (and very needy) stranger to you! I call the first three months the “screaming potato of responsibility stage.” It will take time to get to know them and for their personality to show. Hang in there, and the bond will come. If you are concerned, reach out to your OB or a therapist and tell them how you feel. You may be experiencing postpartum depression and there is shame-free help available. 3. “Labor is an emergency.” Very few labors are emergencies. I think my OB told me it’s under 1%. We’ve all seen it on TV: pregnant lady’s water breaks suddenly and dramatically in public, baby arrives seemingly moments later. While in rare cases labor happens fast (this is called “precipitous labor”), it is unusual, especially for your first baby. It’s a big range, but the average labor lasts hours. Mine lasted 29! And my water broke well into my labor when I was already at the hospital. And your water does not always break in one big gush, sometimes it leaks slowly and sometimes your doctor may have to assist you in breaking the amniotic sac. You will likely have plenty of time to get to the hospital or birthing center. In fact, the first several hours of this might be you wandering around your apartment, moaning, trying to eat a snack or two, and timing your contractions. The general rule is when your contractions are 5 minutes apart, last a minute, and in this pattern for an hour, it’s time to go. This is called the 5-1-1 rule. It’s important to remember not to view childbirth like you would an illness. It’s easy to do because of the medical setting and the hype/stigma around birth. But birth is natural and your body was made for this. 4. “I’m too petite to give birth vaginally.” This was believed in the medical community for years, and it’s total bullshit. There are rare conditions caused by childhood malnutrition that can cause a deformed pelvis, but other than that (and this condition hasn’t been common since Victorian times), you are more than likely good to go. Your baby will be sized and shaped just for you. I’m 5′1″ and weighed 105 lbs pre-pregnancy and I delivered just fine. The size of you or your pelvis does not determine how easy your labor will be.

5. “You have to push the whole time.” The pushing part is at the very end, after you have spent a long time in labor waiting through contractions for your cervix to dilate to 10cm. (Most of birth is just waiting around, trying to deal with it). The pushing stage can last anywhere from a few seconds to a couple hours. In my case it was a couple hours. If you have a C-section, you might never push or even go into labor at all. 6. “My C-section/medicated/augmented labor doesn’t count. Natural birth is the full experience.” Listen, ALL forms of birth are valid. The important part is coming out the other side with a healthy baby and a healthy you. My OB told me 90% of their patients opt for pain relief of some kind. There is no shame in it, it isn’t inherently unsafe, and it doesn’t make you less of a parent to opt for it. And this is coming from me, a very crunchy hippie. If you are pregnant and have more childbirth questions, talk to your OB, take a first time childbirth class at your local hospital (strongly recommend), and read some books on labor. The more informed you are, the safer your birth will be, and you can go into it with peace of mind.

[spoonhacks]

Ways to Say “No” to Things.

Without saying “I’m sorry.” 1. “I wish I could help but my plate is pretty full right now.” 2. “I have said yes to too many things lately and I’m honestly overwhelmed at the moment.” 3. “I am not accepting any new tasks right now.” (I use this a lot and even though it is firm, I get positive responses because it’s relatable). 4. “I am over-committed right now, but I hope you find the help you need.” 5. “That’s my night to spend time with my family but thank you for asking me.” 6. “I’d love to but my schedule is packed right now.” 7. “That’s not a good day/time for me.” 8. “That’s not really my area, but thank you for thinking of me.” 9. “I’m honored but I can’t this time.” 10. “Thank you but this isn’t something I’m able to take on right now.” 11. “I am needed somewhere else that day, but thank you.” 12. “I am limiting my commitments right now.” 13. “I am honestly not able to dedicate the time right now.” 14. If you are disabled: “Spoons are low, so today is not a good day for this.” (try using “bandwidth” instead of “spoons” if you are not disabled so we can preserve the meaning of “spoons.”) 15. “That’s not a good fit for me, but (offer a genuine alternative).”

[merrybitchmas91-deactivated2019]

Why "doing something relaxing” does not help your anxiety

A lot of the time when people give advice intended to relieve anxiety, they suggest doing “relaxing” things like drawing, painting, knitting, taking a bubble bath, coloring in one of those zen coloring books, or watching glitter settle to the bottom of a jar.

This advice is always well-intentioned, and I’m not here to diss people who either give it or who benefit from it. But it has never, ever done shit for me, and this is because it goes about resolving anxiety in the completely wrong way.  

THE WORST THING YOU CAN DO when suffering from anxiety is to do a “relaxing” thing that just enables your mind to dwell and obsess more on the thing that’s bothering you. You need to ESCAPE from the dwelling and the obsession in order to experience relief.

You can drive to a quiet farm, drive to the beach, drive to a park, or anywhere else, but as someone who has tried it all many, many times, trust me–it’s a waste of gas. You will just end up still sad and stressed, only with sand on your butt. You can’t physically escape your sadness. Your sadness is inside of you. To escape, you need to give your brain something to play with for a while until you can approach the issue with a healthier frame of mind. 

People who have anxiety do not need more time to contemplate, because we will use it to contemplate how much we suck.

In fact, you could say that’s what anxiety is–hyper-contemplating. When we let our minds run free, they run straight into the thorn bushes. Our minds are already running, and they need to be controlled. They need to be given something to do, or they’ll destroy everything, just like an overactive husky dog ripping up all the furniture. 

Therefore, I present to you: 

THINGS YOU SHOULD NOT DO WHEN ANXIOUS

–Go on a walk

–Watch a sunset, watch fish in an aquarium, watch glitter, etc.

–Go anywhere where the main activity is sitting and watching

–Draw, color, do anything that occupies the hands and not the mind

–Do yoga, jog, go fishing, or anything that lets you mentally drift 

–Do literally ANYTHING that gives you great amounts of mental space to obsess and dwell on things.

THINGS YOU SHOULD DO WHEN ANXIOUS:

–Do a crossword puzzle, Sudoku, or any other mind teaser game. Crosswords are the best.

–Write something. It doesn’t have to be a masterpiece. Write the Top 10 Best Restaurants in My City. Rank celebrities according to Best Smile. Write some dumb Legolas fanfiction and rip it up when you’re done. It’s not for publication, it’s a relief exercise that only you will see. 

–Read something, watch TV, or watch a movie–as long as it’s engrossing. Don’t watch anything which you can run as background noise (like, off the top of my head, Say Yes to The Dress.) As weird as it seems, American Horror Story actually helps me a lot, because it sucks me in. 

–Masturbate. Yes, I’m serious. Your mind has to concentrate on the mini-movie it’s running. It can’t run Sexy Titillating Things and All The Things That are Bothering Me at the same time. (…I hope. If it can, then…ignore this one.) 

–Do math problems—literally, google “algebra problems worksheet” and solve them. If you haven’t done math since 7th grade this will really help you. I don’t mean with math, I mean with the anxiety. 

–Play a game or a sport with someone that requires great mental concentration. Working with 5 people to get a ball over a net is a challenge which will require your brain to turn off the Sadness Channel. 

–Play a video game, as long as it’s not something like candy crush or Tetris that’s mindless. 

THINGS YOU SHOULD DO DURING PANIC ATTACKS ESPECIALLY:

–List the capitals of all the U.S. states

–List the capitals of all the European countries

–List all the shapes you can see. Or all the colors. 

–List all the blonde celebrities you can think of.

–Pull up a random block of text and count all the As in it, or Es or whatever.  

Now obviously, I am not a doctor. I am just an anxious person who has tried almost everything to help myself.  I’ve finally realized that the stuff people recommend never works because this is a disorder that thrives on free time and free mental space. When I do the stuff I listed above, I can breathe again. And I hope it helps someone here too. 

(Now this shouldn’t have to be said but if the “do nots” work for you then by all means do them. They’ve just never worked for me.)

[anxious-and-in-pain]

Could crying, like, not trigger migraines?? That would be great universe thanks

[spoonhacks]

For real. “I saw you were sad so here’s some excruciating pain to go with. Enjoy!”

[cptsdwillgraham-deactivated2019]

beep beep sometimes when you have been in survival mode for a long time the parts of you dedicated to Wanting Things atrophy and you forget how to envision a future that feels rewarding because you are busy with the business of staying alive, and it can seem like your life must be pointless because you can’t imagine any long term goals. sometimes even when you leave survival mode you can’t remember how to Want Things. that doesn’t mean you need to give up on having a good and fulfilling life, it just means that Wanting Things is a muscle you need to gradually strengthen. the part of you that has dreams and aspirations is still there, it just fell asleep, but if you wiggle it enough it can and will regain feeling. it’s okay to start small

[qunari]

one of the worst myths perpetuated in fiction i think is the idea that teenagers get angry and hate their parents for no real reason. it's one of the endless ways older folks trivialize the real hurt and frustration and pain that teenagers experience - which, with no small amount of irony, can come from that very kind of trivialization.

when i was an angry and hormonal teenager, i was taught i was having a rebellious phase. my mother taught me i was being disrespectful to her. media taught me it was a product of being an irrational teenager. but when that shit didn't fade as i grew up, when i grew even more bitter towards her, i started learning that it was actually a completely rational response to the literal years of abuse from her. i wasn't just angry, i was traumatized. still am.

and to this day, I've never met a teenager who is "irrationally" hateful towards their parents. and maybe that's a product of not knowing any entitled rich kids, but my point stands. teenagers are real people with real emotions, which don't come out of nowhere or exist for no reason. teenage anger and pain may be harder for them to express or control, but its existence is not irrational. and i HATE every depiction of the irrational, parent hating teenager in media who opposes all adults just because they are teenagers, rather than because of any of the very real reasons teenagers have to be angry and hurt.

[spoonhacks]

I’m 32 years old now. I was right. I was valid.

[lifeafterpsychiatry]

Health is not a virtue and illness is not a character flaw or a moral failing. People who are healthy aren't healthy because they did everything right. People who are sick aren't sick because they did something wrong. Illness, both mental and physical, can hit literally anyone at any time. Good people aren't exempt from suffering, so let's kill the idea that if someone's sick, it must be because they're doing something wrong. That's not how it works. The world isn't fair like that.

[spoonhacks]

Slugging It

You’ve heard platitudes about “baby steps” your whole life, now get ready for “slugging.”

Yesterday at work I was hit pretty hard with fatigue, the kind where my brain couldn’t even focus on one thing for more than a minute before I had to sit back in the chair and close my eyes to recover. Still, I really wanted to finish unpacking a box of inventory that had been sitting there in the way for over a week.

Instead of giving up and leaving it for later I decided to just unpack it very slowly. Like absolute slug pace. I moved my body slowly, I read the packing slip slowly, and I typed in the new items one letter at a time into the system. It was a bit comical and did make me smile, almost like a game: “how can I finish this task while doing my best slug impression?” And you know what? That shit got done!

So if you have chronic fatigue, pain, or even anxiety here is your permission to attempt your task as a slug. Make it ridiculous. And watch that shit get done right before your little spindly slug-eyes.

[spoonhacks]

My Fibro Journey and How I Came Back from Rock Bottom

This not advice. But this is a true story, and it’s time I shared my Fibro journey. I was diagnosed with Fibromyalgia just as college was ending. This is not to say it began then, but it came to head enough to finally get an answer. This came about a year and a half after my Interstitial Cystitis diagnosis, and I was in BAD shape. I was 90 lbs, deteriorating, and everything winded me. The pain was constant and completely overwhelming. I had thrown every last drop of my energy into finishing my college thesis and graduating from a school I had worked SO hard at. When it finally commenced, I felt lost. I was depleted from the effort and it was 2011 and the economy was in shambles. Having nowhere else to go, I moved into my dad’s spare room in Massachusetts, miles away from the state I had always called home, my precious Florida warmth, and the love of my life. I was, unsurprisingly, miserable, and my health tanked immediately. I was cold all the time. No amount of blankets helped because I wasn’t generating my own heat. I remember spending Thanksgiving eve in the emergency room because an Interstitial Cystitis flare had caused a UTI to back up and give me yet another kidney infection and I had a soaring fever. Things were toxic with my dad. His cure for everything is to get up at 6am and be busy busy busy and I was in desperate need of rest. When it became obvious to me finding a job was not happening, I started an Etsy shop for my crafts with the limited energy I had. It pulled in maybe $200 a month but it felt good to be doing one small thing. A few months later the love of my life arranged to follow me to New England and secured a place for us in the apartment above his father’s house. We were together again but things were tense, his dad is occasionally a monster, and it wasn’t long before we were moving again. My health was awful and we were broke as a joke. I was sleeping 12 hours a day and spending the rest of my time trying to figure out what kind of life I was going to be able to have. I was severely depressed. We moved to an absolute shit-hole of a apartment in a bad neighborhood. Rent was $850/month for 280 square feet. We could barely afford it, and mostly lived off of my partner’s disability check and food stamps. My small savings was gone. We fought about money a lot. The Etsy shop brought in maybe $300 now, but it was clear this was not going to cover everything for a long time, if ever. My health only continued to decline and I felt utterly useless. Some days I was too sore to even get out of bed. The stress was unbearable as I watched everything in my life spiral. I honestly felt like if something didn’t change and soon, I was going to die. I thought back to the last thing I’d done right: my college thesis at art school. It took me forever to choose what medium to do the project in as there were a few I’d been practicing proficiently. I kept asking myself: “What am I the best at? What am I the best at?” and got nowhere. Finally I asked myself “What am I the worst at? What medium am I absolutely shit at that I would love to do but never learned how?” And the answer was pen and ink. A few months later I graduated with a pen and ink portfolio with one of two A’s in my professor’s senior class. So here I was, applying to design jobs and retail jobs and anything else I thought I might be good at with 0 responses for months on end. Then, instead, I asked myself what I was the worst at-- manual labor! After all, grocery shopping would knock me out until the next day. I realized this was insane to even consider and I might literally die. But I was so low it didn’t matter. If I continued wasting away like this I was going to die anyway. I knew this in my heart. Having cared for horses as a kid I started applying for barn jobs in the area. I remember straightening myself up and forcing myself to look energetic and animated for the interviews. I finally got a job. I was terrible at it. Shoveling for hours and pushing around a 300lb wheelbarrow, imagine! I could not lift a hay bale (they are about 65 lbs). But, I got up at 4:45 in the morning and drove to work in the snow before the plows came and always got to work on time. I worked only weekend days and by Sunday night I would have to make sure there was a crockpot meal going because I knew I would collapse at the end of the day. I cried in the car on the way home every single shift. My body was on fire. Mondays I could not get out of bed. The pain was immeasurable and I spent most of the day crying and had my partner help me to the bathroom. I spent the whole week recovering and patching myself up enough to get to my next shift on Saturday. But I promised myself something: that I would never complain, not to anyone at work, and not even to myself in my head. I imagined myself as a monk. Chop wood, carry water. I got fired. Then I got another barn job and got fired. Then I got another one and got fired again. The 4th job was still hard, but I did not get fired. I could now lift the hay bales. I gained 20 lbs (entirely muscle) and my body was completely different. Instead of being carried to the bathroom on Monday, I could transport myself to the couch and do basic self-care activities. I could do my crafts during the week again and between the two income streams I could afford my half of living expenses and was very slowly socking away a tiny, tiny nest egg that would eventually become the start up capital for my business. Two years had passed since mucking my first stall. My Fibro was not cured by any means but my IC was somewhat in remission and I was doing much better. Daily life got easier. After all, compared to hay bales, lifting the pasta pot while making dinner was less of a big deal. I eventually left the barn job and got a job doing landscaping and construction-- more manual labor! My new boss was disabled too and used a walker on the job site. He was also a Buddha in a blue collar. After having kept my illness a secret for 2 years of barn jobs I could finally tell a boss the truth and it was a relief. He understood me and always gave me the jobs I could flourish at.  I learned a lot from him, did legitimately good work, made slightly better money, and moved out of the shit-hole apartment to an art community, which was an important step forward on the path toward opening my own business and doing art full time. During the second year of running my shop I realized I didn’t need a second job anymore and that it would be the first year in the last 5 where I wouldn’t have to dig any holes.

I’d risked it all, every last drop of my health. It could have killed me. And the agony was indescribable, but I would do it again. My body is changed forever and even years since I have last worked manual labor I am still improved for it and much more active than I was in those dark years right after college. Everything I have now I owe to that one, insane decision I made at rock bottom. This is not advice. Take what you will from my story. I still despise people who say “exercise will cure Fibro if you just tried harder :) :) :)” or some stupid shit like that. None of them know how dangerous this was or how much suffering I endured. It could have easily gone the other way. There were days my partner saw the condition I was in and begged me to stop. I told him with a roar in my voice if I didn’t keep going I was going to die. I don’t regret it. I have less pain now, consistently, than I did before I went through all that and I still try to keep up my fitness level so I never go back there. Thank you for reading my story. I can’t recommend my path, but if you come away with one thing from this, just know that there is a path forward, somewhere, and perhaps in the most unlikely of places.

[storybookprincess]

suddenly remembered this poem as i was making breakfast this morning & frantically googled “poem remembered to buy eggs?????????” & somehow managed to find it & it utterly knocked the wind out of me just as much as when i first read it

[spoonhacks]

Getting Stuff Done When You Can’t Get Off the Couch

Having one of those days where your chronic fatigue is so bad getting up is reserved for bathroom breaks? Still got a life to live and stuff to do? That’s me today, so here’s a list of things you can accomplish from the couch (or bed) when your spoons are circling the drain. Note: It’s also helpful to keep in mind that fatigue isn’t just physical, it makes your brain tired too, so if you are so tired you can’t even concentrate, it’s time to rest for real and try again when you’ve recovered a little. 1. Write emails and make phone calls that are on your to-do list.

2. Clear some of the clutter in your immediate vicinity. Even if you just stack up the dishes that you’ve collected to bring to the kitchen later, straightening up a little will improve your immediate environment and make the chore easier for later.

3. Catch up with friends on social media, call, or text. 4. Schedule doctor’s appointments, meetings, or social events you will attend when you are feeling better, or cancel the ones that you are going to have to skip. 5. Read, study, or research something. 6. Write a blog post.

7. Plan your next personal project on Pinterest, read how-to’s (or life hacks 😉), or search on Google for answers to questions you have. 8. Order food for later on an app like Grubhub or Beyond Menu, You can pick any delivery time even if you order hours in advance. 9. Watch online tutorials or documentaries to expand your knowledge of something interesting or important to you. 10. Improve your personal organization. Work on your budget, write a to-do list, a grocery list, or update your calendar. 

[thatgirlwithadhd]

So much of managing your mental health is just…learning to parent yourself like you’re a toddler

Like, “Honey, it’s 10 pm and you’ve been up since four in the morning, no wonder you’re emotional. Plus all you’ve had to eat today was three chocolate truffles and a half a protein drink. Make yourself some scrambled eggs and peas, you can even put them in separate bowls so they don’t touch. Then go to bed. You can do more fun things tomorrow, but first you need to sleep. Okay?”

[ituckyouinmypocket]

.

In the old days we didn’t call this managing mental health, we called this managing being an adult.

.

[thatgirlwithadhd]

Interesting, that.

See, I’m five years into adulthood. I have a college degree (a few in fact), a car, insurance payments, a job, yada yada. I ostensibly joined the Grown Up Club a few years back.

But, having grown up with a number of undiagnosed disorders and mental illnesses, I never learned a healthy style of self-talk.

If I’m honest, between depression and anxiety, the way I grew up talking to myself was abusive. I’m not kidding; if the things I thought to and about myself were said aloud to someone else, it would be considered verbal and emotional abuse.

So this idea of treating myself like a small child? With the same loving firmness and compassion?

This is a radical idea for me.

This is me learning to stop those abusive thought patterns, and talk to myself in a kinder, healthier way.

And it doesn’t have much to do with adulthood. I know adults who have treated themselves unkindly this way for many years. A healthy relationship with yourself doesn’t just sprout once you’re an adult; you have to develop it.

Those are my thoughts anyway. I hope they make sense.

[crippledbyemotion]

When I got my first tattoo the artist would give me warnings that something might hurt more by saying "This is gonna get spicy!" And now any time I have some sort of burning or sharp pain my brain goes "Oh it's getting spicy!"

So thanks Damian for making my chronic pain life a little more fun!

[spoonhacks]

I can get behind this.