Latest Posts

Reworking Your Home Life to Minimize Chronic Pain

We have a lovely guest post from a new contributor, Jackie Waters, of Hyper-Tidy.com

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Via Pexels, Pixabay

Living in constant pain can cause worry, stress, anxiety, and depression. You wonder if you’ll ever feel better or if you’ll keep feeling worse. It is possible to get your life back and get a handle on chronic pain. People who suffer from it can incorporate everyday, holistic changes to improve their quality of life and manage their pain.

Lifestyle and Diet

Mindfulness meditation is a way to effectively train your brain to turn down the volume on pain. According to The Huffington Post, “A typical meditation involves focusing on different parts of the body and simply observing with the mind’s eye what you find.” Doing this makes you aware of the connection between your mind and body; you observe painful sensations as they happen, and then let go of struggling with them.

You may doubt the impact mindfulness meditation can have on chronic pain, but it has been shown to reduce it by 57 percent, and skillful meditators can reduce it by more than 90 percent. Imaging studies show that mindfulness meditation calms the brain patterns underlying pain. Over time, these changes alter the structure of the brain itself, decreasing the intensity of the pain.

In fact, hospital pain clinics often prescribe mindfulness meditation to help patients cope with the suffering caused by many diseases, including cancer, heart disease, multiple sclerosis, migraines, diabetes, irritable bowel syndrome, celiac disease, arthritis, back issues, fibromyalgia, and chronic fatigue syndrome. In treating pain, you also reduce levels of anxiety, stress, and depression associated with suffering.

A diet for chronic pain sufferers typically consists of high protein, vegetable, and fruit intake and an avoidance of carbohydrates. The fundamental principle of the diet is that patients with chronic pain need to avoid high-glycemic foods, which are sugars and starches. Avoiding these foods while eating more protein and vegetables is thought to promote strength, movement, energy, and mental function.

Home Life

By implementing strategies for keeping your house generally tidy and maintained, you won’t spend hours cleaning it all at once, which can lead to a pain flare-up. Habitually performing these small-but-significant daily tasks prevents you from becoming overwhelmed with clutter and cleaning tasks.

Begin your day by making your bed in the morning so you’ll start off on the right foot. Put your clothes where they go. Hang them up, fold them and put them in the dresser, or place them in the hamper. Also, do one load of laundry a day. Otherwise, if you ignore the laundry all week, it will take you hours to get it all done.

Put things back where they belong when you use them. Not only will it keep your house cleaner, but also you won’t have to try to hunt down an item when you need it again. When you check the mail, deal with it immediately. Throw away junk mail and file bills. Lastly, end every day by cleaning your kitchen. Do the dishes, clear the table, sweep crumbs off the floor, and wipe down the counters, table, and stove.

If your house needs a deep cleaning, consider hiring someone else or asking a friend or family member to help. Certain tasks may be harder for you to handle, such as vacuuming or heavy dusting. These would be ideal for your cleaning helper to handle. Chemicals in household cleaning products can cause hormonal disruptions that lead to chronic inflammation (which can lead to chronic pain), so consider switching to all-natural products.

Suffering from pain can make life less enjoyable. Take back your life by implementing holistic changes. Through meditation, diet, and small changes throughout your daily routine, you can lead a life with less pain.

Jackie Waters is a mother of four beautiful and energetic boys. She lives with her family on a three-acre hobby farm in Oregon. Her goals are to feed her family as much fresh and home-grown food as possible, focus on sustainability while doing so, and practice simplicity.

She is here to tell you: you can have it all. With diligence and balance, you can achieve a beautiful, clean home. Her journey has been full of challenges, but she learned so much along the way. She would like to share with you her ideas and tips on how to be hyper-tidy!

 

 

How to Get Work Done When You Have a Chronic Condition

Working while dealing with chronic pain is another task on the To-Do List (or so I keep trying to tell myself).

I used to crank out work at such a high level, and now I feel so much slower, like I’m trudging uphill through molasses in January. What used to be a machine is now rusted, rickety, with nuts and bolts rattling and clinking down upon the floor.

But things still need to get done. Jobs and projects require my attention, divided though my attention may be. How do I focus and get through my docket when my pain tries to pull me in so many directions?

Here’s what’s on my docket these days (WARNING: COLLUSION!):

  • day job with Enjuris,
  • editing/writing side gigs,
  • legal side gigs (gotta love this “Gig Economy“),
  • writing a book with my father about his work,
  • volunteering for the MetroWest Opera as a board member (and I need to do the annual taxes),
  • volunteering for the Pain News Network as a columnist and a board member (gotta do some writing),
  • and on top of all that, I want to write an eBook on productivity and chronic pain,
  • and I want to work on my own short stories.

Yeah.

And I work from home, so distractions abound. Like Fattie Ding Dongs here.

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This is her best side.

With all of these distractions (I use “all of” when referring to my cat or all of the other things in my house), how do I stay focused? How do I get work done while also battling the daily chronic pain?

Three Important Tasks

Productivity experts focus on the Most Important Tasks. I chose Three Important Tasks, because I’m immature with acronyms and also because I have learned that, realistically, I generally can’t accomplish more than three in one day. (I don’t count responding to emails or phone calls in this, because I count that as busywork.) Sometimes I can’t do more than one, but I feel like I need more than one in a day. I rank them in order of importance, so if I only get the top item done, well, then at least I’ve made one productivity expert happy.

Find More Time

Alzheimer’s patients are known to “sundown.” Chronic pain and illness patients have their own strange version of this in which suddenly, without warning, we lose all energy and are done for the day. It frustrates me to no end that my work day ends prematurely when I still have so much to accomplish. Then I wondered if lengthening the day on the other end would affect how long I could last.

I have started waking up at 6ish in the morning if I can, 7 at the latest. My goal is 5 am. Why? Because I function best in the morning. As the day progresses, I become less and less functional, which makes sense because I’ve been sitting for long periods of time. This means I have to get my work done first thing. This also means I have to eat the frog.

Also, figure out what your peak times are. Mine are 6 am and 10 am. Something about that magical silence when nobody else is awake does wonders for my work at 6, and then the second cup of coffee helps my groove at 10. Keep notes to find out what yours are.

Eat the Frog

I do the biggest, most important work first, even if it’s something I desperately don’t want to do. Think of it like an inverted pyramid; that’s how newswriters write their stories. The most imperative piece of information goes at the top, because that’s what people read. As the story progresses, the information becomes less and less important because the likelihood of the person finishing the story diminishes. (Sad, but true.)

So, start the day with what you are avoiding. Eat the frog. I’ve found that is generally the most pressing bit of work to do.

Stretch Every 15-30 Minutes

This goes without saying, but I know that I need a timer to remind me to get up and move around. Also, for those of you who are also working from home, remember to get outside. It’s easy to become a hermit and stay inside for days at a time. It even becomes comforting to remain in this little bubble, not talking to people, going for ages without actual human contact. Talking to people online isn’t quite the same.

Self-pace your workload and listen to your body. Don’t try to keep up with everyone else or do what you used to do. I keep trying to do that and every time I do, I end up in bed with a flare. You’ve got a new body now. Listen to it.

Listen to the Same Music Every Day

This might sound weird, but I’ve listened to the same video game soundtrack every day since I started working from home. I’ve never actually played the game (Ori and the Blind Forest), but my sister sent me the music one day last year and I fell in love with it.

Listening to the same music on repeat is like white noise, but better. Somehow I don’t get bored. There are familiar rhythms that I lean into, spikes I use for creativity. The rest of it melts into the background. Research has found that familiarity is best for focus, and I know that when I don’t know what song is coming up next, I don’t work — I listen to the music. So, I find it best to know the music. A Pandora station you’re familiar with would achieve the same thing.

Celebrate Successes

Did you finish an assignment? Three-minute dance party. Did you publish a blog post? Fist pump. Did you get an article accepted by a publication? You get to scream as loud as you want for the next ten minutes.

Ergonomic Workstation

My kneeling chair saves my life at work. I also have an Edge desk that I will be using more, and I also spend my afternoons in a recliner with my laptop. Find what works for you and what lets you get your assignments done in the most comfortable manner possible. If you need to speak with your employer about accommodations, many of them cost less than $500 and can be made out of stuff already in your house.

Routine

Routines are imperative when you have a chronic condition. This is why traveling is so hard for us. Find out what works for you and stick to it.

Lists and Sticky Notes

The one thing that has driven me up the wall since I’ve developed my chronic condition is that my memory is now shot. Between the stress and my medications, I can’t even remember if my therapist has bangs when I see her every week. I’m constantly struggling for words and phrases, going “Um, uh, um,” and drawing blanks.

Sticky notes are my savior. I have every different size and color, and they have everything from personal mantras to what I need to mention to my boss that day. My desk and monitor are wallpapered with them. The only downside? I need to remember to throw away the outdated ones.

And there you have it. That’s how I keep myself in line during my workdays. It might not sound revolutionary, but it’s my method, and so far it’s worked for me.

Considerations Before Deciding to Work from Home

We’re getting back on a regular schedule, guys. In the meantime, one more post from a lovely writer who’s taking us in a new direction: working from home with a chronic condition! Here is a contribution from freelance writer Jenny Holt, please give her a warm welcome. 

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Working from home can be a dream come true for the self-reliant… or a nightmare for procrastinators.

Do you find it increasingly difficult to commute to work every day due to your condition? Perhaps you even find that workplace stresses are making you feel worse. You may be considering working from home if you find that medical appointments are difficult to fit in around working hours. However, working from home is a big commitment, so it is worthwhile to consider the pros and cons before making such a decision.

Reduces Pressure

When you work remotely or freelance, there is a different kind of pressure. It is less overbearing because colleagues and bosses are more distant. However, deadlines are still there and even if these are flexible, work has to be done within a reasonable time limit or the client will look elsewhere. You are however, freer to set your own hours, manage your own workload and to take on as many projects as you can realistically handle – if you are a freelancer. For remote workers, you have more freedom to choose hours, but there are still exact workload expectations from your employer.

Freedom may relax you, but working from home is not stress-free even if you are in a comfortable environment. Sufferers of chronic pain may find that working from home, with a more relaxed work schedule, will ease some of their pains. This is because stress can exacerbate conditions, but also because you can find a way to work in your home that is more physically comfortable. A happy mind is going to help make a happier body.

Requires Discipline

Self-discipline is needed to ensure that you do not wind up working through the night to complete projects. Without the pressure of being watched or having set targets to meet, it can be easy to procrastinate. Try to separate your workspace from your home space to ensure that there are no distractions.

It is possible to play psychological tricks on yourself to make you feel like you go for a walk and arrive at work (even though you’ve really come back home) and when you finish your work, go out and come back again. While at work, you need to resist the temptation of the TV, of the fridge, and social media, and set yourself reasonable goals, targets, and a good time to just stop. However, one bonus is if you are freelance, if you have a day when the pain is too much, you can scratch it as a work day, and pick up the next day when you are feeling better or you can work in bed.

Time for Family

When you arrive home from work, you may feel tired and in pain, which makes it more difficult to spend quality time with your kids. Your time at home is also limited by your commute. This may prevent you from going on the school run or attending your children’s extracurricular activities. By being a home worker, you can fit family time in during the day as opposed to the evenings when you may be too tired to play games or run around with the kids. It is easier to take days off to care for sick children and to pick them up from school in the afternoon.

Lack of Relationships

You may find that you miss making new working relationships with like-minded people when working from home. Chatting with colleagues or working with people on a project can be a nice distraction when you suffer from chronic pain, but working at home can let you dwell on the pain you are feeling. Mental health issues are key for people working from home – the solitude can be too much. However, it is also easier to take breaks, do exercises, and go out for lunches to see friends or family. By breaking up your day, you can distract yourself, and find some of the positives in life which help dull pain.

Freedom for Leisure

You may have always wanted to take a certain course or try out a new leisure activity that didn’t fit around your working hours. When you work from home, you can make time for more things that you love and organize your schedule to accommodate hobbies. This also means therapy, trying Qigong, Tai Chi or meditation to manage and reduce pain, and to fix the fundamental underlying cause if possible.

Jenny Holt is a freelance writer and mother of two. She loves nothing more than getting away from it all and taking her pet Labrador Bruce for long walks, something she can do a lot more now she’s left the corporate world behind. Email her at jennyholtwriter@gmail.com! 

Got a Pain in the Neck? Incorporate These Stretches into Your Daily Routine

Hello, everyone! I have been swamped with work, so we have a guest post today from Megan Wilson of PainInjuryRelief.com. She brings us a lovely graphic dedicated to neck pain relief that you can use while at work or on the go! Stay tuned for more regular content soon. In the meantime, thank you, Megan!

Living with chronic pain is a trying experience. It can impact each and every minute of your life, from your interactions with friends and family to sleep and mental health. So if there are things you can do to help relieve pain in one area, or to strengthen a part of the body to help compensate for pain elsewhere, then it’s a path to pursue.

One area to focus on is the neck; we need our necks to do so much. We use them to work on our computers, to talk on our phones, to read. And neck pain affects so many people—up to 70 percent. Want to learn how to help your neck? This graphic can help.

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Huffington Post: Personal Injury Lawyers: What I Learned From Being on Both Sides of the Aisle

Happy New Year, everyone!

I can’t believe it’s 2017. We’ve finally closed the lid on the dumpster fire that was 2016, thank God. Now we can focus on bigger and better things.

You know, like new writing ventures! (How’d you like my smooth transition there?)

I wrote a new article for the Huffington Post about my experience as both an attorney and a personal injury client. Swing on over there to check it out if you feel so inclined!

Click here for article!

 

Enjuris: “I Had to Mourn the Person I Used to Be”

Hi guys! I know, two posts in one week! It’s almost like it’s Christmas!

So, my new job interviewed me about my two car accidents for their blog series (DISCLAIMER, yes they pay me because I work there, ETC.), so if you want to head on over there and see what’s what, please do!

I mean, even the graphics turned out great. I was talking about how my life got derailed at age 17, and this was the final image for the story:

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Love it.

Anyway, just giving you a heads-up. I’ll be posting more normal things soon and hopefully more product reviews. Several people have reached out to me with things to try, and I am ready to get back into the game.

ONWARD!

Working with Enjuris to Help Personal Injury Accident Victims

I could start this entry by waxing poetic about my time away, but that’s a bit boring, isn’t it?  

My absence was because of all sorts of reasons. The prolotherapy regimen was a big one – five weeks of intense pain will cause anyone to fall off the map. But most importantly?

I started a new part-time job!

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*Cue the trumpets and fanfare*

After I left my job as an attorney, I wasn’t sure whether I’d find anything that would fit my skills and aspirations. I loved to write and edit, and I had a law degree I wasn’t doing much with. Deep down I knew I wanted to help others like me, people who’d been decimated by accidents and who needed information but didn’t know where to find it or even where to begin. I thought I’d have to do that on my own time, though, and that any job would be a 9 to 5 time-suck that kept me from my true pursuits. That is, until I found Enjuris.

DISCLAIMER: Yes, I work for Enjuris. I don’t usually talk about my work here in more than vague terms because I don’t like to mix my personal and professional lives. However, my editor and I have talked about it at length. WT&C and Enjuris actually have the same audience and benefit from the same content, so why not give this a try? They gave me complete leeway with the writing. With that said, here we go!

Here’s some background: Enjuris is a new legal project. After a lengthy interview process – which included the most thorough background check I’ve ever had, they called everyone on my resume that was still alive – I got the job and jumped right in. It’s a remote position, which is magical, and I’m able to roll downstairs in my pajamas and work from the office or the living room at whatever odd hour I choose, as long as my week’s work is done by Friday afternoon.

Enjuris is a different kind of bird. It’s a personal injury law information site for people who have been in accidents, kind of like a Nolo or a FindLaw, with articles about different types of injuries, types of accidents, how to get through the litigation process, state-specific pieces, and a law firm directory. Many articles are still being written (that’s partially my job) and new content is being created every day.

However, the thing I love about Enjuris is that my editor is absolutely determined to make it a site that serves the accident victims first. And when I say that, I mean serve them first emotionally. She wants to provide information that will help them heal, not just information that will get them an insurance settlement. (Both are nice, to be fair.)

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Dolla dolla bills, y’all!

I guess that’s something I have yet to find. There are websites devoted to accident victims, and there are sites devoted to knowledge, but there aren’t hybrids. At least, there aren’t good ones. My editor has been open to every idea I throw at her. I have 12 years’ worth of pent-up ideas for websites and resources that I’ve wanted to implement on my own or with other people, but I haven’t had the time or money to make them happen.

On our weekly calls we brainstorm how to make the site more accessible, more people-friendly, more forward-facing, and more compassionate. We don’t want to just provide information people can get at Nolo. What’s the point in that? We want to provide that information and take the next step, which is helping that person get into a support group in their area or join an online collective for people with the same injuries. (Can you tell that I’m passionate about this?)

I think the difference is that most everyone at Enjuris is able to play a variation of the “Six Degrees of Kevin Bacon” game. You know, think of any movie and within six movies, you can get to Kevin Bacon.

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Look at that face. How could you not like him?! Photo credit: Genevieve719 via Visual Hunt / CC BY

Here, within a few people you can get to someone who’s been in a horrible accident. My editor’s sister, for instance, suffered dreadful injuries in a motorcycle accident, which was featured on the Enjuris blog. It’s far more common than you’d think.

I can’t tell you how excited I am about this work. It feels like Jake Blues having his moment of truth about getting the band back together in The Blues Brothers. Enjuris takes every talent I have and puts them to good use. I write articles about personal injury accidents and how to recover from them as healthily as possible. I edit articles to clarify their intent and showcase their ideas. I use my legal background to make sure that anyone who comes to our site gets solid advice and knows what to do. Because I’ve been exactly where our readership has been (twice), I can write in a way that isn’t condescending or pandering.

I want to put everything I have into making this project as great as it can be. And readers, I want your input as well. You’ve been where I’ve been, and if you want to take a look at the site and tell me what you think, what you’d change, what you want, then please tell me. I welcome your feedback, as always!

 

Pain News Network: Needling Away Pain

Sorry for my massively long absence, folks. Here’s my latest column for the Pain News Network

One would think that encouraging inflammation is a bad idea, right?

“Let’s stick you with needles, inject a dextrose solution, and create some new tissue. It’ll be great!”

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That’s what my dad has been saying since 2004. He had prolotherapy done for his low back in college, and it did wonders for him. I was extremely dubious. It sounded far too strange – injecting a sugar solution? Into my neck?

I have very extensive injuries from two separate car accidents. To sum it up quickly, I have badly-healed thoracic fractures, bulging lumbar discs hitting nerves, and two cervical fusions that cause a lot of post-surgical pain. The idea of purposefully creating more inflammation sounded insane. But after my second fusion, when the pain started increasing no matter how dutifully it was treated, I decided to give it a try.

Prolotherapy, or sclerosing injections, is still considered a bit radical, even though it’s been around since the 1930’s. The reason for the mystery is because there haven’t been enough double-blind studies conducted yet.

It’s a non-surgical ligament and tendon reconstruction injection designed to stimulate the body’s natural healing processes. By creating inflammation, you prod the body to create new collagen tissue and help weak connective tissue become stronger.

Because I live in the Boston area, that meant the drive to the doctor’s office was an hour each way. Most people do each area (lumbar, thoracic, cervical) separately, and each area takes approximately five rounds of shots. For me, that would’ve meant an eternity of needles.

I chose the insane route: five weeks of intense pain, meaning five weeks of all three areas at the same time.

It’s not supposed to hurt that much – people can take an aspirin and go to work after the appointment, grumbling about their aching knee. My pain response has become far more sensitive in my back and neck since the accidents, so what’s like a bee sting for other people is like thick surgical needles for me.

As such, it was hellishly difficult. Each appointment was on a Wednesday and took about fifteen minutes. The doctor injected my low back and then let me rest with an ice pack down the back of my pants. Then he injected my neck, loading me with more ice packs. Then, very gingerly, he approached the mid-back, which was the most damaged of all. He had to consult my MRIs for that one because the bones are not quite where they’re supposed to be.

For me, it took about an hour for the real pain to kick in, which gave me just enough time to drive home. The doctor numbed me with a topical anesthetic as well, so I sat on five ice packs and made the drive back to my house, where I collected all the ice packs in the freezer and arranged them on the recliner. Then I wouldn’t move for about two days. Sleeping was almost impossible without ice packs stuffed into my pajamas; I still can’t sleep on my back, two months later. Sitting like a normal human being was out of the question.

For five weeks, I spent the two or three days after shots recovering from absurd amounts of pain, and then by the time I’d recovered, it was almost time for the next round. My level of pain was far more than what other people online have reported. I also did a lot more shots at once than other people do. My experience was very much abnormal. But, most importantly: Did it work?

Well, yes. It did. Amazingly so. I’d told myself at the beginning that if this procedure controlled even 25 percent of the pain, that would be worth it. That would be worth the driving, the pain, and the out-of-pocket cost that isn’t covered by insurance.

My cervical fusions caused my arms not to work a lot of the time. Typing, writing, and using my hands for general tasks was very difficult and tiring. Additionally, my shoulder blades had what felt like black holes filled with electric fire. Nothing helped it. Nothing worked.

Two weeks into the prolotherapy regimen, my arms were fine and the black holes had disappeared.

I still have a lot of my daily low-grade, all-body pain. I still have massive headaches and neck pain. But my sciatica is also better, I’ve noticed – I was able to go to a rock park called Purgatory Chasm and clamber all over humongous boulders, and afterward I was only sore, not in agony.

So do I think it works? Absolutely. The other great part is that it’s supposed to last for at least a few years. Steroid injections only last a few months. I very much prefer this schedule.

If you can get past the “alternative therapy” label and can scrounge up the money to pay for it, I’d highly recommend prolotherapy. It worked for me, and I’m still waiting to see more of its effects. I hope that it works as well for you.

Everybody Has Something Wrong With Them

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Everybody has something wrong with them.

I don’t care who you are or how many marathons you’ve run or how loud you are about it, but literally everybody on this planet, no matter how young or old, has something inside that is actively working against them. That young boy bicycling to school has Type I diabetes. The teacher shepherding students into the classroom has arthritis. The school bus driver has sciatica that runs down her right leg. The mailman has a limp because his hip gave out after twenty years of walking his route. The old woman shuffling down the sidewalk has cataracts, rheumatoid arthritis, and skin cancer from the days of tanning with baby oil.

If something isn’t wrong with us when we’re born, something will go wrong. As soon as we are born we start to die, and little chips of us are broken away year after year by means of illnesses and sprains and accidents and cancers.

Some people don’t even know anything is wrong yet. Two guys see their coworker struggling with the side effects of chemotherapy and think, with a bubble of guilt, “Thank God that isn’t me.” But one of them has hardened arteries that could blow any day, and the other comes from a long line of early-onset dementia. They both feel fine. They are not.

Many of us have the luxury of finding out exactly what is wrong with us. Examining the human body is like doing a house inspection — you poke around for a few hours, you’re going to find some surface stuff, sure — but you won’t know the deep, intimate secrets of the house until you’ve lived there for a few months, searched every corner, found the seventies leisure suit in a back closet, realized the basement wasn’t sealed properly, and discovered that the retaining wall is actually backed with sand.

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“Well, I’ve finished checking out your house, and the foundation is made of squirrels.”

When you know your doctors’ ever-changing resident team by their respective names, you go to the doctor too often. One doctor’s appointment unearths something that leads to several more appointments, MRIs, bone density scans, X-Rays, blood draws, and countless other tests. Out of desperation to comprehend their own conditions, they become amateur medical researchers just to understand what’s happening to their bodies. Unfortunately, those are the people who sound hypochrondriatic. They’ve been forced into situations that set out their bodily shortcomings, which separates them from the seemingly healthy people, which means they have to drag out their laundry list of problems in order to explain strange behavior. This can happen even during normal events — like sitting, for instance.

“Hey Jen,” my friend says, “you want to sit with me on the couch? It’s super soft!” She pats the couch enticingly, waggling her eyebrows. It does look super soft.

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Like a puppy!

“Sorry, friend,” I say, moving to the hard-backed reclining chair across the room. It was probably made during the Civil War. “Because my back is messed up from two car accidents that resulted in four fractures and two fusions, I can’t sit on soft things. I need furniture that provides support. Like the floor. And if you see me get up and wander around, that’s just because I need to stretch. I can’t sit for really long periods of time.”

“Whole couch for me!” my friend shouts.

Here’s what happens when I’m out at dinner with friends.

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Cause of death? DELICIOUS.

“Hey Jen, do you want to get Italian food?”

I hesitate. “I’ll need to check the menu, but even if I can’t eat, I’ll still hang out with you guys.”

“How can you hang out with us and not eat?” They stare at one another. “What does that even mean?”

“Well, I have — okay, well they’re kind of like food allergies, but it’s an autoimmune disease called Eosinophilic Esophagitis? It presents as food allergies but it’s a histamine reaction –”

“So what can you eat?” one of them asks, impatient.

“It’s easier if we list what I can’t eat.”

“What can’t you eat?”

“Wheat, gluten, dairy, shellfish, peanuts, and sometimes alcohol.”

“How do you live?” they always ask. I mean, I don’t know anything else. It’s been this way for nine years, so I’m kind of used to it. I feel better if I don’t eat those foods, and feeling better is always nice. So hey, everybody wins!

The person will usually size me up then, eyebrows a bit furrowed. “But you look fine!”

It’s meant as a compliment. You look great! You look fine! Yes, I look fine. I broke my spine, not my face. Most of us look fine. The largest organ in the body is the skin, and it covers literally everything else that could be potentially be problematic. If our injuries and illnesses aren’t superficially obvious, then we must not have anything wrong with us. Right? Isn’t that how it works? Buildings definitely don’t fall because of weak foundations, right? That’s inside the house. I’m sure it’s fine.

I had the fortune of finding out my problems early in life. A car accident forced doctors to dig deeper into my body to figure out why it wasn’t healing. These visits led to my diagnosis of Eosinophilic Esophagitis. By visiting the doctor so much, I know which symptoms are worthy of note and which can be ignored. 

My point is that someday, you will reach this point if you haven’t already. You might not experience it for very long — you might be seventy and be told you have stage four cancer with six weeks to live. Would you spend those six weeks learning everything about your condition and ways to prolong your life? To live more comfortably? To make things as normal as possible? That’s what all chronic patients do every day. The difference is we’re not acute. Our problems have been around for a long time. They’ll be with us until we die unless cures are invented during our lifetimes. I might be alive for some electrostimulation invention that blocks all of my pain and not just a percentage. I might be alive when they’re able to selectively cut the nerves responsible for being stuck in this painful feedback loop.

But your inner demons, your bad back or gout or interstitial cystitis or myocardial infarction, it’s sitting there, waiting. It will unveil itself at one point or another.

My ultimate point is that if you can’t see the problem — if you can’t visibly see the electrifying agony sparking up and down my spine, if you see a woman with a cane who doesn’t look like she needs it, if you see someone using the handicapped parking space while not looking the part — how about you don’t say anything?

Other people have a skin jacket, just like you, that covers a world of complicated internal machinations. My body breaks down more often than my car. Please go easy on me.

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These 100-million-plus people in the United States who suffer from chronic pain know that pain more intimately than you hopefully ever will. The Dictionary of Obscure Sorrows has a great word that personifies this: sonder. You’re just a background character in someone’s life. You’re the person in the coffee shop buying a latte when that other person, the hero of another story, gets the worst news of her life. You’re not the protagonist. Everybody is in a different story.

Think about how complex your life is, how much stress you have, how hard your job is, how frustrating relatives can be, how many things are on your plate. Imagine having a roommate suddenly move in — one who doesn’t pay rent, who eats all your food, who keeps you up all night playing the hammered dulcimer. You become sluggish. Wasted. This roommate, he sucks away all your energy, and sometimes he even follows you around, sucker-punching you in the ribs. This roommate is the worst.

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“Carl, I can’t believe you drank all my liquor, stole my girlfriend, and set fire to my house! I’m not giving you the security deposit back!”

That’s what we’re dealing with on a daily basis. Our attention is split in half. One half is focused on our regular lives, our jobs, and our families. The other half is focused inward, caught in a storm of such great strength that it pulls the breath from our bodies. So if we seem distracted or forget what you’re talking about, that’s why.

Just be patient with us. We’ll be patient with you when and if the time comes, because we understand.

ChronicBabe: 5 Reasons Why Leaving My Job and Working From Home Was The Best Decision I Ever Made

Check out my guest post for Jenni Grover Prokopy’s site, ChronicBabe!

5 Reasons why Leaving My Job and Working From Home Was the Best Decision I Ever Made

Hi! My name is Jen, and I’m a 29-year-old attorney, editor, writer, and patient advocate. I have spinal fractures from two car accidents that required two cervical fusions. The jury’s out on whether I’ll need more surgery.

I worked in an office for three and a half years after law school. At that point I was dealing with the fallout from my first car accident, which happened in 2004 and decimated my thoracic spine. Law school happened, and then my job, and then… another accident. That second accident became a barrier to a normal life.

Eventually I decided to leave my job and work from home. Here are the reasons why it was the best decision I ever made.

My health comes first now.

I was living the dream: I had a legal job that started at 8 am, ended around 6 pm, had great coworkers, and allowed for a life. My bosses were cool. During my second year, however, I had another car accident. The moment the pain set in, I knew I’d eventually have to leave the traditional workforce. In the year before I left I suffered from increasing pain (which caused repeated vomiting and a hernia), insomnia, loss of control of my hands, limping, muscle spasms, and loss of my ability to focus. In the end, it wasn’t worth it. Now, I telecommute from a recliner. I schedule my day around doctors’ appointments. I work a schedule that flows with when I’m feeling best. Before, there wasn’t time in the day to work on my health, so it controlled me.

I am much happier. 

The “What should I do?” questions wore down my family  especially my husband. I steered every conversation in that direction because I wanted someone to say, “No, you can’t work.” I wanted someone to make that impossibly hard decision for me. My husband begged me to think about my health while I thought about finances. How could I leave without a backup plan? What if I made the wrong decision?

So I did what is generally inadvisable. I started a side-hustle, working on sites like Upwork.com and Flexjobs.com to create a cushion for when I made the jump. I don’t know how I did that, because the level of pain at that point was inhuman. I think it’s because I knew that leaving was inevitable. Now, having the weight of that decision off my chest feels unbelievable. I can breathe. I can think. And with that, I can work. I’m not paralyzed.

My body doesn’t rebel.

The longer I stayed in the office, the more my body fought. My old firm does a lot of tax work, so February 15 to April 15 meant staying late and working weekends. After my second accident, I couldn’t do it. That year my bosses let me keep a normal schedule, since they knew my first spinal fusion would interrupt the marathon anyway. Now, my body doesn’t suffer because of my job. I plan my work around how I feel. Sometimes I need to work harder one day to make up for a rest day, and that’s okay.

I mold my office to fit my needs.

My bosses were great. They bought me a reclining chair for when I needed breaks, and I bought a kneeling chair for my desk. I borrowed books to prop up my monitor and make a standing desk. They never questioned when I had to stretch. Whenever my pain flared, I read on the floor. When it got to the point at which I could no longer sit for a 30-minute meeting, though, I knew something had to give. These days I work from my recliner. Sometimes I use the kneeling chair in the office. Sometimes I work from bed while using prism glasses (they look ridiculous but are gentle on my neck).

I blend my skills in exciting ways.

I did not work for the first few months of 2016 because I was recovering from my second spinal fusion. Once I was coherent, I was able to freelance and create the job of my dreams: attorney editor. The great thing about freelancing is that I get to use all of my skills. By switching up projects, my mind stays engaged. Editing doesn’t require as much mental bandwidth as estate planning does, so it suits me right now.

I finally understand my body. We aren’t fighting anymore, and that’s worth all the fear I felt before making the jump. Now I know that working from home – and putting my health above everything else – was the right decision for me.