Everything Hurts

A limitless life with chronic pain

Amanda VinciComment
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"And here you are living despite it all"
Rupi Kaur's single line of poetry relates struggle of a spoonie in the simplest of ways. It's not corny, it's not exaggerated, it's just plain true. We are all here, alive, moving forward... at whatever pace it may be, regardless of the cards we've been dealt. What a simple and empowering statement.

Yet it should not be interpreted that living is merely enough... we shouldn't settle for just being alive. Because we are alive, anything is possible.

I've lived nearly half of my life with a chronic illness. 14 years of waking up and feeling pain someplace or everyplace on my body. Most days I rally and rise, go to work and out with friends, try my hand at physical fitness and clean my apartment. Some days I lie motionless because the physical pain is too much to bear or the mental exhaustion is overwhelming. As a spoonie, it's the balance of both of these kind of days that is necessary for my success as a person.

At the beginning of my fight I was 50/50. Half good days, half bad. For a while I was fine with that. For every fun day I had out of bed... going to high school like a regular kid, I had one down day to watch Oprah and eat frozen cookie dough (yes, Oprah was still on air). And by fine with it I mean I was pretty damn depressed but chalked it all up to teenage angst — and I was a teen who actually had something real to be angsty about.

A year into my battle I started wanting to stay home even on days I felt okay enough to go out. The reality of being in pain forever had hit me hard. This is who I was and who I'd always be. I obsessed over thoughts of never being normal and how my illness would make me less than everyone else. I had been diagnosed with Fibromyalgia and this strange new word became as important as my own name was to me. If someone were to ask me who I was at that time, I would have immediately thought of my illness and not of my talents and passions and goals. 

I look back now and realize I placed limitations on myself simply because I was sick and not because I truly couldn't accomplish something. I'd immediately assume I wasn't able to climb three flights of steps rather than try to and fail. I was afraid of proving myself right, facing the reality that I was a young woman with a disability. Declaring that "I can't" was on my own terms, giving me a sliver of control over the pain. Do I blame myself for handling my condition this way? Absolutely not. It took me a long time to notice that my pain wasn't always in my way — I was.

Here I am at 29 years old, fourteen years after my original diagnosis, with the addition of a few other conditions and plenty of experience with the ups and downs of having a chronic illness. My symptoms sometimes limit me but I have a limitless life. It's limitless because I no longer hold myself back from experiencing things out of fear that my pain might stop me. Whether I'm trying a new exercise with my personal trainer or committing to a work assignment, I say yes before my body says no. It's important to listen to your body, but hey, at least give it a chance to speak.

17 lessons learned in 2017

Amanda VinciComment

01.  I identify as a spoonie, but being a spoonie is not my identity

02.  I have the same ability every other person has, even with a disability

03.  Physical fitness is achievable, even with chronic pain

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05.  Don't trust first impressions

06.  Allow myself to feel sad. It's okay to not be okay

07.  Stand up for what's just. Speak up for myself and for others

08.  Always plan for some down time after periods of high activity

09.  Speak openly and without apology about my illness

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11.  Don't be afraid to try new treatments and let go of old ones

12.  Think about the future but don't obsess over it

13.  Make a conscious effort to focus when foggy

14.  I am not alone in this fight

15.  Don't place limitations on myself before even attempting to do something

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17.   My muscles do way more than just feel pain

18.  I love my body, it's given me so much more than its taken away

 

BONUS WALLPAPERS

Tricks & Treats for Spoonies

Amanda VinciComment

It's day after Halloween, but I'm still in the trick or treat spirit. Whether you've been feeling pretty ghoulish this fall or are a flare-free unicorn, one things for sure — we're all a little bit Wonder Woman. Here are my favorite fall tricks and treats for feeling good and getting cozy!

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TRICK: INVISIBOBBLE
These telephone cord hair ties are totally on trend right now, and for good reason. The Invisibobble helps you to style all sorts of up-dos without creating dents or causing headaches and migraines. I've also uncovered a hidden use! I like to keep one on my right wrist to rub out arthritis pain by simply rolling it around! 

TREAT: DRY ROSÉ CIDER
Wölffer Estate is beautiful winery located right nearby my home in Long Island, NY. They've recently gotten some new attention for their beautifully designed wine bottles and labels, and as a designer, I couldn't help but give them a try. I've fallen in love with their individual bottles of Dry Rosé Cider and refuse to stop drinking it just because it's fall. Who says cider has to be apple?

TRICK: UNDER-DESK LEG REST
I simply can't get work done with my legs planted on the floor in an upright seated position. I always need to adjust, stretch and elevate to keep from cramping and an under-desk leg rest is the key to my productivity.

TREAT: GLOSSIER MILKY JELLY CLEANSER
All the pretty girls are using it, and since all girls are pretty, you guys should definitely use this too! My skin is not handling the spastic summer/fall/winter weather rotation that's been underway in NYC, and this gentle & natural cleanser has soothed my irritation and left my skin feeling soft and supple.

TREAT & TRICK: MADEWELL SCARF
It's scarf season! So treat yourself to a big soft, adorable and oversized one like this Madewell embroidered "Making Faces" cotton number. The trick? I like to use my scarves to stretch out during the day, almost like a resistance band.

TRICK: COOLING MASK
Everyone's about the face masks lately, including me. But how about one you can use again and again? Two night ago I woke up in the middle of the night to super irritated skin and a swollen jawline. I grabbed an ice pack and fell asleep with it but it just wasn't staying in place or covering enough of my face. I purchased this awesome/scary looking mask on Amazon and I can't wait to try it out!  

What products are you fawning over this fall? 

My Spoon Theory

Amanda VinciComment
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People who suffer from chronic illnesses tend to refer to themselves as "Spoonies". I do it all the time when referring to our community, especially here on Everything Hurts. If you refer to yourself as a Spoonie chances are you've heard the Spoon Theory, and if you're like me, you somewhat get it, but don't really understand how exactly it applies to your life.

The Spoon Theory was born when Christine Miserandino was asked by a friend what it felt like to be a person who's sick with Lupus while they were out to eat. Christine quickly grabbed all the spoons from her table and the tables around them and handed them to her friend. "Here you go, you have Lupus" she said to her. She explained that the difference between being someone who's sick and someone who is healthy is that you consciously have to choose what you're going to do each day. Every day you need to count your spoons and know just how many you have before you get started, then, with each activity or task you do you have to give away one of those spoons. The theory really breaks down into rationing your energy and strength so that you can complete each day with the amount of "spoons" you are given.

I always had this theory in the back of my mind, especially when having to explain my conditions to my friends and family. Sometimes I use spoons, but other times ill just use whatever is around us to make the point. 

The truth is, I never really applied the Spoon Theory to my actual life. Every day is different, and good days can mean twenty spoons while bad days can mean 3... but I figured it might be fun to to decode the Spoon Theory for myself, calculating the amount of "spoons" I have on an average day and just what I use them on.

SPOON 1: GETTING OUT OF BED
Whether its a great day or the worst one ever, getting out of bed will always cost me at least 1 spoon. Sometimes 2-3, but on an average day 1. I have to contort myself into different positions until I feel like I can finally sit up and prep myself for putting my feet on the floor.

SPOON 2: GETTING READY
Getting ready for work is the hardest thing I do all day. Harder than training with my personal trainer, harder than walking up the steps at Penn Station, harder than walking back and forth to work. Just putting my clothing on feels like an Olympic sport, and don't even talk to me about doing my damn hair.

SPOON 3: DOING MY DAMN HAIR
OMG MY HAIR. Sometimes I decide to not even spend this spoon. If I don't have a date or an afterwork event, forget it, it's going up or it's staying a mess, I really don't care. It's not worth it. I'm Sicilian and my hair is difficult to tame, so if I am doing my hair it's when I have a spare spoon after showering at night or some extra time in the morning.

SPOON 4-5: COMMUTING
I have an amazing job as a Senior Art Director right in Midtown Manhattan, and I'm so lucky that I live right in walking distance of the train that takes me to work in about 45 mins. I take a 10 min walk to that train in LI and then another 10 min walk from Penn Station in NYC to my office. All that hustling wakes me up and gives me a boost of energy that I need to start my day, but usually costs me 1 to 2 spoons.

SPOON 6-8: WORK
I spend an average day working at my laptop, getting up to go to meetings and walking the Highline to get lunch. All in all, it costs me about 2-3 spoons.

SPOON 9-10 (or 100): COMMUTE AGAIN
Commuting home usually costs about 1 spoon, but thanks to the irregularity of the MTA and the hellscape that can be an overcrowded and delayed Long Island Railroad, it may straight up kill me, there's no telling which one.

SPOON 11 or +1: PHYSICAL THERAPY (2x a week)
Depending on how I'm feeling physical therapy can either give me back or cost me a spoon. On an average visit I pretty much break even. I love going to get a great stretch, heat and stim and a massage targeted to what hurts me the most that day. 

SPOON 12-14: PERSONAL TRAINING (2-3x a week)
I absolutely LOVE working with my personal trainer Rob (see my previous post for more info!) even though these sessions make me feel empowered and successful, they definitely cost a spoon or 2.

SPOON 15: FERRETS
You've probably heard about my ESA Sneaky Weasel, one of the biggest little loves in my life! And recently I've been blessed with another ferret, Cannoli. He's nowhere near an ESA yet, and is still a frisky 8 month old who's up to no good. Cleaning up, playing with and caring for these guys definitely takes a spoon away.

SPOON 16: SHOWER & BED PREP
Getting ready to go to bed is almost as exhausting as getting ready to get up from it. I have a pretty long routine thanks to my addiction to beauty products and muscle rubs and stretches, but if I skip out on it all I usually don't feel as good for the next day.

ALL IN ALL: 16 spoons
Not bad, not bad at all.

So that's my average spoon usage! On other days I'll swap out therapy and training with a work event, a date, time spent with friends or extra work/working late, but all in all I use about 16 spoons on an average pain day. What this means is that on a pain day where I have only 10 or even 5 spoons many of these activities have to be eliminated or modified. That's usually when I work from home, cancel plans or add in an activity that could help me to feel better, like taking a bath.

I'm super glad I ran through this to give myself an idea of how much energy and effort I have to spend as I go about my week. I definitely recommend you do it too! 🥄

 

Train to fight pain!

Amanda VinciComment

The past few years of fighting chronic pain has been tough on my body in more ways than one. With little exercise, eating too many carbs and sweets and entering my late 20's, weight gain was inevitable. The more weight I began to put on, the worse I felt, and the less I moved. And the less I moved, the worse I felt. Things we're beginning to spiral out of control real fast.

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I've been going to the gym about 2-3 times a week for almost a year, and haven't seen any real results. I'd go in after a physical therapy session, so I was nice and warmed up, and then hit the elliptical for 30 mins for some low impact cardio. If I felt alright afterwards I'd move over to some weight machines and then call it a day. I was wasting my time, and getting no results.

One night after another useless workout I had the urge to ask about personal training, I was fed up and afraid, but it was time to make some sort of change. That's when I spoke to Rob. Rob was everything I needed right at that moment, he was super encouraging, curious about my conditions and optimistic about what I could achieve. I was always afraid of personal training, in my mind, that was something for fit healthy people, not a girl who struggles to climb the subway steps. My mind was about to be changed.

When I first booked a few trial appointments with Rob I wrote down "fibromyalgia, autoimmune disease, arthritis and www.everythinghurts.me" on a piece of paper, and he told me he'd do his homework. I came in a few days later and he was super excited to show me everything he learned about training someone with chronic pain. We got started on a training program that would condition me to excel at my every day tasks, reduce my pain and stiffness, and help me to tone up and slim down.

Rob's been training be for over a month now and the results are real. I'm physically a different person, and the changes are dramatic on the inside and starting to break through to the outside. He's got 3-4 different routines prepped for me, and we carry them out depending on how I'm feeling and what's hurting. Rob says the key to a successful trainer is education and observation — seeing problems and trouble shooting them to find the right solution. When we work together, he's not just counting reps off to me, he's calculating — studying my position, what's bothering me, what's going to strengthen me, and give me the best work out possible for that day.

Block Training is Rob's independent training business, inspired by the Eastern Block training systems that dominated sports before the time of the Cold War. A scientist was assigned to each athlete to break down their movements, study their muscle mass and body fat and find the solution to making them the best at their sport. This is how Rob approaches each of his clients, as individuals with unique problems that need specific solutions. If you live in the NYC/Long Island area I promise you you will not find a harder working more passionate trainer than Rob. Reach out to him at @block_training / blocktraining@yahoo.com / 5164745108 and tell him Everything Hurts sent you.

I've never felt more strong and determined in my life. I was always the kid who got winded running alongside the soccer ball at 6 years old, I could never imagine myself boxing, deadlifting and throwing a medicine ball. Now here I am, beating my 15 year old sister at reps of squats. And even though I'm still far from where I want to be, I'm a long way from where I've started.