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Guest Contributor: The Pain Companion by Sarah Anne Shockley

 

As many of you know, I write an occasional column for the Pain News Network. One of my compatriots there, Sarah Anne Shockley, recently published a book called The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain that everyone who experiences pain or chronic illness should read. She was diagnosed with TOS (thoracic outlet syndrome) in 2007 and has lived with intractable nerve pain ever since.

It’s a very easy read and covers the necessary topics for a chronic pain lifestyle manual, such as anger, acceptance, relationships, self-image, and more. It’s the way Sarah writes that stands out; she is accessible, not only because she’s lived it, but also because she can relate her unique experience to other types of pain and offer constructive guidance. My pain isn’t her pain, but she showed me that we’ve been in the trenches together. This talent always stood out to me in her columns for PNN, and it’s translated very well to book form.

Since Sarah can say it better than I can, here is an excerpt from The Pain Companion about anger, blame, and chronic pain:

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While guilt and shame often stem from a belief in our own failings, anger and blame usually arise when we look outward and try to understand our situation from the standpoint of the people and circumstances that seem to have caused our problems.

When we’re not getting better, when we’re in pain and it is relentless, sooner or later we are going to get angry at someone or something.

We ask, Why me? How did this happen? Who or what is to blame for my misery? We look for the root so we can understand what happened. We think that if we can understand how it all came about, we can somehow undo it.

The trouble with this mindset is that the only way to answer these questions is to find something to blame: the job, the boss, the stresses of life, the other driver, the doctors who didn’t see it coming, air pollution, fatty foods, genetics, a traumatic childhood, our spouse, or anything else we can think of. We imagine that there is one thing, one starting point, one cause. If we can find it, we can heal.

At times, it is useful to pinpoint the onset of pain, such as when knowing exactly how an injury or illness happened can contribute to returning to wellness. But once that is found, it is no longer helpful to continually go over the history of an injury or ailment, the mistakes, or who was responsible for what.

No matter the real cause of your situation, at some point, you are also going to feel angry with yourself for having gotten into this situation, for making the choices that somehow led to this.

You can also build up resentment against yourself for not being able to get out of the fix you are in. It just seems to reflect badly on you as a person.

Of course, most people will say that they don’t think less of you because you are in pain or don’t consider you a bad person for being sick or injured. But you may.

On the inside, you feel awful about having to live in this situation and inflicting it on others. You can’t help it. It wears on you and can create a negative sense of self over time.

You will undoubtedly also feel angry at the pain because it is so insistent and so faceless, a force that can’t be bribed, cajoled, or bargained or reasoned with.

Anger is understandable, and it can be very healthy, but keeping it around because you need someone or something to blame, including yourself, only serves to keep pain in place.

Antidotes to Anger and Blame

Allow Your Anger, Then Use It for Fuel

There is nothing inherently wrong with feeling angry about what happened and what you are currently suffering. In fact, for people stuck in depression and sadness, anger can be a very liberating force.

Anger has a lot of energy in it. Rather than sitting still and feeling powerless, anger wants to move and change things, so it can be a very helpful emotion when harnessed for good. It can move people out of the doldrums and into positive action.

However, once you have gotten in touch with anger, you don’t want to stay in it. It’s not helpful to continuously feel angry and blaming, even if there is something specific to fault. It simply isn’t conducive to healing.

Anger that doesn’t move turns to bitterness. Use its energy to fuel your determination to recover, rather than let it eat away at you. Let it go and you are free to move on.

Leave the Past Where It Is

If it is important to you, spend the time you need to make a clear assessment of how your illness or injury came to be, then leave it alone. If the cause is uncertain or a complete mystery, then make the choice to leave it as a mystery for the time being.

Your energy and attention need to be on healing, not on who did or didn’t do something, or what exact circumstances were at fault. With the only exception being the times you may need to be involved in legal activities or a medical review, or if the cure lies in finding the exact cause, leave the past in the past.

The energy of blame is always looking backward, and you need to marshal your resources in the present so you can heal and have a better future.

Let Go of Resentments

I think of resentment as the quieter cousin of blame. Rather than accusing and pointing the finger, resentment seems to stem from a creeping and pervasive sense of unfairness.

I noticed that I sometimes felt resentful that I was injured through my employment, but my employer was able to carry on with life as usual. I resented his freedom and normalcy, while I had to live with pain and debilitation day in and day out as a result of working for him. I felt it was somehow unfair that he carried on relatively unscathed (except for some financial ramifications).

I resented having a doctor I had never seen before spend about thirty minutes with me and write a report that strongly influenced my disability settlement. I resented the way the workers’ compensation and disability system required me to keep re-proving my injury over and over again instead of actually supporting me to heal.

Keeping these feelings around wasn’t going to get me anywhere positive. I had to learn to notice them when they arose and then decide to just let them go. In the interests of your own well-being, I would recommend letting go of resentments against anyone involved who has hindered your healing or given you bad advice or seems to be unsupportive. You just don’t have the energy to waste on blame and resentment. Instead, use your energy for healing yourself.

Hold Everyone and Everything Blameless

As a second step to releasing resentments, decide to relieve everyone and everything of their burden of blame, including yourself, even if you feel blame is deserved.

This can be challenging because many of our legal and insurance systems can be very adversarial, bent on finding out who is to blame, and we speak of pain, illness, and injury as if they are enemies to be overcome. It is easy to fall into that pattern, but it really isn’t a useful strategy for healing.

The point isn’t whether or not you’re right and justified, which may well be the case. The point is that holding on to anger, blame, and resentment simply isn’t going to get you where you want to go.

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Sarah Anne Shockley is the author of The Pain Companion. In the Fall of 2007, she contracted Thoracic Outlet Syndrome (TOS), which is a collapse of the area between the clavicles and first ribs, and has lived with debilitating nerve pain ever since. She has been a regular columnist for the Pain News Network and is a regular contributor to The Mighty, a 1.5 million–member online community for those living with chronic illness and pain. Visit her online at http://www.ThePainCompanion.com.

Excerpted from the book The Pain Companion. Copyright ©2018 by Sarah Anne Shockley. Printed with permission from New World Library — http://www.newworldlibrary.com.

 

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Washington Post: The Other Opioid Crisis

I just stumbled across a great piece in the Washington Post by a former hospice nurse. We’ve heard this story before (“the opioid crisis is harming pain patients”), but it needs to be told again, louder and louder, in bigger and bigger outlets, until we are heard and understood.

How many more patients will commit suicide before this problem is addressed?

Contributor: How to Maintain a Fulfilling Lifestyle When You Have Chronic Pain

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Photo Credit: Pixabay

Approximately 11 percent of the U.S. population suffers from chronic pain, a condition that’s defined when discomfort lasts more than six months. An initial injury or illness morphs into a drawn-out period of physical and mental suffering with symptoms such as decreased appetite, mood swings, fatigue, disrupted sleep, and mobility issues due to pain. It can be difficult to enjoy old activities or keep up with simple, routine-based tasks, but it’s not impossible. By making a few lifestyle changes, chronic pain sufferers can maintain a fulfilling lifestyle without feeling restricted.

Get Help for Regular Tasks

Fatigue and pain can make it difficult to keep up with chores like cooking, cleaning, and pet maintenance. While physical activity should not be avoided, make things easier on yourself from time to time—especially if you’re going through a rough patch. Hire a cleaning service to do a deep clean so home maintenance is easier to manage. Use a grocery or meal-delivery service so you don’t rely on unhealthy food delivery as a source of nourishment. Hire a dog walker and/or pet sitter to make sure your pooch doesn’t act up due to a lack of activity. These pros know how to handle dogs of all shapes, sizes, and breeds. You can even meet caretakers in advance to ensure they’re a good match for your furry friend.

Make Time for Self-Care

Don’t wait for spare time to squeeze in self-care. Make a conscious effort to schedule your favorite activities like you would a doctor appointment. This can be anything from dinner with friends, reading, or meditation—you name it. Engaging in a hobby or activity you enjoy can distract you from pain while helping you focus on something positive. Trying something completely new can boost self-confidence, too.

Eat a Nutritious Diet

Extra weight is only going to tax your joints and cause more pain, so maintain your weight with a well-balanced diet free from processed foods and filled with vegetables, fruits, lean proteins, whole grains, and lots of water. Up the ante by adopting an anti-inflammatory diet that’s void of red meat (a couple times a year is fine), is low on dairy, and has eight to nine servings of vegetables (two servings can be fruit) a day.

Do Exercises Conducive to Your Condition

Exercise can be difficult when you have chronic pain, but it shouldn’t be avoided as it can only worsen your condition. Ease into a routine and definitely don’t push yourself if you’re in severe pain. The best exercises for someone with chronic pain include: stretching to increase range of motion and loosen tight muscles, strength exercises to build lean muscle mass, and light cardio such as walking, cycling, and swimming. Make sure you talk to your doctor before starting any diet or exercise plan as there’s no one-size-fits-all plan.

Use Pain Medication with Caution

The United States is in the middle of an opioid crisis, mainly because drugs are being prescribed to mask problems rather than treat them, thus prompting dependency. This is why some health professionals are recommending an integrative approach (non-pharmacologic) such as stress-reduction therapy and meditation to avoid a potential addiction problem.

Each case of chronic pain is as unique as the individual feeling discomfort, so it’s impossible to say when symptoms will completely cease. Adopting healthy habits and asking for help can make life more manageable. Since emotional and physical pain are connected, make sure you’re managing your stress levels so that you don’t get caught in a vicious cycle.

Kimberly Hayes writes over at PublicHealthAlert.info — go check her out!

New Report: Flipping the Script: Living with Chronic Pain amid the Opioid Crisis

The folks at Neurometrix just published a new report regarding their survey of 1,500 Americans living with a variety of chronic pain conditions. The results were startling (and hey hey, I’m quoted on pg. 7!):

As the opioid crisis continues to make headlines, the chronic pain community has found themselves in the midst of this chaos – grappling with how to manage their conditions under increased scrutiny.

We wanted to get a better understanding of how the opioid epidemic is impacting this community, so we partnered with Vanson Bourne to survey 1,500 Americans living with a wide range of chronic pain conditions about their feelings around the opioid epidemic, opioid use and their ongoing search for alternative treatments. We’ve compiled the findings in our latest report, “Flipping the Script: Living with Chronic Pain amid the Opioid Crisis.”

Below are just a few of the top findings you’ll see in the report:

  • The unfair stigma as a result of the opioid epidemic: The majority of respondents (84 percent) believe a stigma exists, and as a result, 50 percent indicated they have lied or hidden their opioid use from others.

  • How this stigma is affecting treatment of care: More than a third (34 percent) had to stop taking opioids because their doctor no longer prescribed them, and 42 percent stated the stigma of opioid use has impacted how they communicate with their doctor about their pain.

  • The strong desire for alternatives for chronic pain treatment: The most common reasons for those living with chronic pain to seek other treatments is because they don’t like the side effects of prescription medications (43 percent) and that they prefer to treat pain without prescription medication (39 percent).

  • The fracture in the doctor-patient relationship. Fifty-nine percent of respondents said they don’t believe their doctor is completely informed about treatment options outside of prescription drugs. Only 15 percent said their doctor has proactively suggested looking into alternative treatments.

  • Individuals are taking treatment into their own hands: Ninety percent of those living with chronic pain are actively seeking new treatment methods. When evaluating new treatments, respondents indicated that in addition to their doctor, feedback from friends and family (87 percent), online reviews (80 percent) and news coverage (73 percent) are increasingly influential sources.

  • A “one-size-fits-all” approach to treating chronic pain isn’t working: Those with chronic pain use an average of two treatment methods regularly, and are comfortable trying new treatments, with 59 percent indicating they have tried new methods in the past year.

Check out this website if you want the full report!

A Little Late on Global Accessibility Awareness Day

I’ve been very quiet on this blog because I’m focusing on other projects, but I still receive emails from people asking to post things. One of them was from Redfin, the real estate website. They’ve written an interesting report on the most accessible cities of 2018. I was a bit late on Global Accessibility Awareness Day (which was May 17), but hey, better late than never.

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Here is the Redfin report in full:

With Global Accessibility Awareness Day this month, we took a look at the most accessible cities throughout the country. The Social Security Administration estimates that one in five Americans is living with a disability, which can pose a specific set of challenges during everyday life. Although legislation exists that requires accessibility in public housing like hotels and university dorm rooms, the Americans with Disabilities Act doesn’t require all community features to be accessible.

Accessibility: How Did We Get Here?

The Americans with Disabilities Act and the Fair Housing Act – both pieces of federal legislation – mostly apply to public housing, multi-family dwellings and public spaces. The first nationally recognized standard, released in 1961, addressed “accessible and usable buildings and facilities.” More than a decade later, the Rehabilitation Act of 1973 prohibited discrimination and required some new construction of public spaces to be accessible, as well as allowed for alterations to make existing spaces accessible. In 1991, the U.S. Department of Justice adopted the ADA Standards for Accessible Design as its standard for new construction and alterations, which later formed the foundation for ADA guidelines on recreation facilities, government buildings and voting booths.

Many communities have launched efforts to become more accessible for the disabled, but others still have a long way to go. In 2017, we added a custom search filter on Redfin.com that allows you to find accessible homes for sale in your area. Using the accessible search filter and additional city data, we put together this list of the top 10 most accessible cities.

1. Metro D.C. (Alexandria, the District of Columbia, and Arlington)

Number of Accessible Listings in 2017: 10,634
Median Home Sale Price: $580,000
Percentage of People Living with a Disability: 6.7%

Metro D.C., which includes the nearby cities of Alexandria and Arlington, is the most accessible metropolitan area in the nation. The Washington, D.C. subway system also runs through Alexandria and Arlington, and each city has its own bus system; the city of Alexandria is home to GO Alex, a public transit service specifically designed for people with mobility issues. The metro area is packed with community recreational programs designed for people with disabilities, and all federal buildings are ADA-accessible. With wide sidewalks that are easy to navigate, ample access to high-quality healthcare and a number of ADA-compliant attractions, parks and businesses, this metro area has earned the #1 spot on this list.

2. Salt Lake City, UT

Number of Accessible Listings in 2017: 1,261
Median Home Sale Price: $265,500
Percentage of People Living with a Disability: 7.5%

Salt Lake City, famed for its high quality of life (thanks in part to the convenient and historic downtown area and breathtaking views of the Wasatch and Oquirrh Mountains), is close to Great Salt Lake and home to nationally renowned, ADA-compliant recreational areas and charming city parks. Ranking just behind the D.C. metro area on accessible, quality healthcare, The Crossroads of the West is also well-outfitted with curb ramps and offers free parking at city meters for people with disabilities who have a windshield placard or specialized license plate. Salt Lake City is also home to several accessible attractions, including the Salt Lake Temple, Hogle Zoo and Antelope Island State Park, where you can see free-roaming bison grazing in the valleys.

3. Tampa, FL

Number of Accessible Listings in 2017: 876
Median Home Sale Price: $265,000
Percentage of People Living with a Disability: 8.9%

The shores of Tampa Bay are known for pristine beauty, and the city itself is steeped in history; those factors, plus its warm, tropical climate make it a desirable location. However, Tampa is also known for its disability-friendly atmosphere, with wide sidewalks over flat terrain, accessible public parks and attractions, and the Sunshine Line – door-to-door transportation and bus passes for the elderly and people with disabilities. The Florida Aquarium, ZooTampa at Lowry Park and Busch Gardens are all ADA-compliant, and those are only a few of the notable (and accessible) attractions in the city.

4. Portland, OR

Number of Accessible Listings in 2017: 5,500
Median Home Sale Price: $370,000
Percentage of People Living with a Disability: 9.7%

As one of the most ADA-compliant cities on the West Coast, Portland is home to Pioneer Square, the Harborwalk and so much more – and most locations are easy to navigate. TriMet service runs through Portland and its suburbs while offering reduced fares for seniors and those with disabilities under its Honored Citizen program. Beautiful public parks and green spaces dot the city, and each is accessible and easy to navigate.

5. Tucson, AZ

Number of Accessible Listings in 2017: 7,699
Median Home Sale Price: $210,000
Percentage of People Living with a Disability: 10.9%

Tucson, home to the University of Arizona, is a flat-terrain city and sits between several mountain ranges. It has an accessible bus service: Sun Tran. Tucson attracts visitors to several ADA-friendly attractions, including the famed Mt. Lemmon, the Pima Air and Space Museum and the Tucson Museum of Art.

6. San Jose, CA

Number of Accessible Listings in 2017: 659
Median Home Sale Price: $780,000
Percentage of People Living with a Disability: 5.0%

Seasonably warm and surrounded by the Diablo and Santa Cruz Mountains in the heart of the Santa Clara Valley, San Jose is one of the most accessible cities on the West Coast. Featuring a booming high-tech industry and serving as a cultural hub for central California, it’s home to several notable ADA-compliant attractions, such as the Sunol Regional Wilderness and the beautiful Cathedral Basilica of St. Joseph. The Municipal Rose Garden, Happy Hollow Park and Zoo and several local businesses all over the city are also disability-friendly.

7. Vancouver, WA

Number of Accessible Listings in 2017: 3,024
Median Home Sale Price: $300,000
Percentage of People Living with a Disability: 10.5%

Vancouver is home to more than 450 acres of parks, trails and open space, most of which is ADA-compliant (the only exception is space that’s designed to preserve natural terrain). Many accessible hikes and outdoor attractions are available, including sightseeing at Captain William Clark Park Trail and the Columbia River Waterfront Renaissance Trail.

8. Atlanta, GA

Accessible Homes Listings in 2017: 3,855
Median Home Sale Price: $266,000
Percentage of People Living with a Disability: 8.6%

Atlanta, known for its grand old manor homes and several ADA-compliant attractions, such as the Georgia Aquarium, the Atlanta Zoo and the College Football Hall of Fame, is one of the most accessible cities in the nation. The city’s major transportation system, MARTA, is easily accessible.

9. San Antonio, TX

Number of Accessible Listings in 2017: 5,267
Median Home Sale Price: $231,990
Percentage of People Living with a Disability: 10.4%

With wide sidewalks and many ADA-compliant attractions, such as San Antonio’s River Walk, the Alamo and several historical attractions, San Antonio is Texas’s most accessible city. The city’s bus service, VIA, offers discounted fares and priority seating for people with disabilities, making public transit easy to navigate and use. The San Antonio Museum of Art, Botanical Garden and Missions National Historic Park are only a handful of accessible attractions in the city; there are several disability-friendly parks and recreation areas in and around town, as well.

10. Baltimore, MD

Number of Accessible Listings in 2017: 17,067
Median Home Sale Price: $171,000
Percentage of People Living with a Disability: 11.9%

Easily accessible transit options, including a subway service and buses, are available in many Baltimore locations to connect residents to the airport, Johns Hopkins Hospital and Washington, D.C. The city’s Inner Harbor area, where you’ll find restaurants and other attractions, is exceptionally well designed when it comes to accessibility.

Methodology

To find out which U.S. cities are leading the way in accessibility, we analyzed data from the Multiple Listings Service, U.S. Census Bureau and Numbeo. The cities were ranked on five accessibility factors: accessible housing, public transportation, community attractions and access to healthcare. The 10 cities with the highest scores in these areas earned a spot on the list.

The number of accessible homes for each area is based on the number of active listings with accessible features in 2017. Examples of accessible features include manageable entries or routes, wide doors suitable for wheelchair access, grab bars in bathrooms and usable kitchens and other rooms.

Contributor: Using Spoon Theory to Explain Chronic Illness

When you suffer from a chronic illness like arthritis, lupus or CRPS, every day can be a real struggle. Some days will be worse than others, so it helps to devise some coping strategies to help you through the roughest days. This may mean having to turn down social invitations or skimp on preparing a ‘proper’ dinner, but only you know how your body feels, so looking out for yourself in these situations is not selfish.

Another challenging aspect of chronic illness is trying to make others appreciate the pain through which you’re living every day. There are cynics out there who routinely accuse invisible illness sufferers of being melodramatic in describing their pain, but there is no call for such ignorance. Sometimes, it takes more than words to truly get a message across.

That’s what inspired Christine Miserandino to come up with the Spoon Theory, a metaphor that is now used across the world by chronic illness patients to communicate their struggles. She devised the theory in 2003 when she was asked by a friend over lunch what it was like to have lupus. Instead of launching into a detailed depiction of her pain, Christine took 12 spoons from unused tables, handed them to her friend and took them away one by one as her friend described a normal day. The point she was trying to communicate was that chronic illness sufferers only have so many ‘spoons’ in a day and regular activities like showering, cooking and cleaning all require spoons, so there is very little energy left by evening time.

Here is an infographic from Burning Nights that goes into further detail about the Spoon Theory and lists some great pointers on how to manage chronic illness effectively.

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Contributor: Furnishings for Your Home to Help Ease Pain

 

 

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Dealing with chronic pain is a challenging battle, especially as it is an extremely individualistic one. With more than 25.3 million Americans experiencing chronic pain every day for the last three months, it is a widespread issue that leads many people to seek the best methods for handling their pain.

However, there are better solutions to managing joint pain that you can add to your home. In addition to treating chronic pain with proper nutrition and plenty of sleep, you can also adjust your furnishings and the layout of your home to ease and reduce inflammation. By adjusting your home in the following ways, you can benefit from an environment that is centered on comfort and wellness.

Creating a soothing sanctuary for rest

One of the most crucial ways to care for your body when dealing with chronic pain is to get plenty of rest. Having a relaxing space at home where you can go to kick up your feet, snuggle under a warm blanket, and listen to calming music is essential to managing both stress and pain. You can add features to the space like hot water bottles, a speaker system to play slow tunes, and some plants that give off good vibes.

Additionally, you can make the space incredibly soothing by purchasing some calming natural soy candles and buying cozy curtains to block out the sun. During the day, when you are feeling the effects of your pain, you can go to this spot, dim the lights, and practice meditation. Knowing there is a designated space to work on relieving your pain will make your days easier, as you will have an outlet and safe space when the pain is at its worst.

Make things easy on yourself

When it gets to that certain point of the day when your pain has taken over and you feel unable to continue with your usual routine, you may feel defeated. But, you can still continue on with your activities if you incorporate certain items into your home to make life a little easier. In the kitchen, there are plenty of items that are friendly to people with pain, like peelers and knives with easy-to-grip handles. In the bathroom, you can consider buying a raised toilet seat or grippers for the tub/shower to help take the pressure off of your knees or other joints. There’s plenty of creative ways to make doing regular things in the house easier on your aching joints and muscles — it’s just a matter of doing some research and finding the alternatives!

By creating a soothing sanctuary in your home and adding some easy-to-use features, you can deal with your chronic pain in a naturalistic way and feel supported by your surroundings.

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.