16 Things People With Chronic Pain Wanna Tell You

COMMUNICATION BY DIANNA LABRIEN

It’s not just in our head. The pain is there and always would be even if there is no apparent reason for it. Our pain is real and will not just go away after we take some pills for a week or two. It would always be there and we have learned to live with it. Here are 16 more things we wish you knew about us!

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1. We Don’t Make a Mountain out a of Molehill
You think you can imagine our pain? Now multiply that amount by 10. No matter how sympathetic you are, studies have proved that people tend to underestimate other people’s pain. Chronic pain by default is hard to imagine unless you have experienced it in your life. It’s invisible, but it is always there. We urge health care not out of hypochondria or the need for attention, but because of our severe physical state.

2. We Need to Balance Actions Carefully
We use the Spoon Theory: We have a limited amount of spoons each day we could use for different actions. Getting up, getting dressed, taking a shower, driving, walking, picking up the phone — each action requires us to use one of our precious spoons. On good days, we finish with a few spoons left, so we can do something fun. On bad days, we borrow spoons from the next day and need extra recovery afterwards. So if we suddenly cancel our plans with you or tell we can’t do it now — it’s just because we ran out of spoons today. Try to understand this.

3. We Struggle to Find a Good Doctor
Sadly, a lot of health care pros lack knowledge in pain management because it is rarely part of their training. We often visit numerous specialists before receiving a proper diagnosis and wait months to years to see a real pain specialist for treatment. Doctors often fall victim to the cognitive error of underestimating another’s pain and a small number of doctors are willing to take the legal risks involved in prescribing powerful pain pills.

Same goes with the nurses. Finding a good one who can really understand and help us relieve the pain is hard! Luckily, there are some online schools like Sacred Heart University that are training future nurse leaders to overcome these issues in the future and provide better care for patients.

While you may think it’s crazy, we’re willing to travel further to find a good nurse with this kind of training and rave about it when we find one.

4. We Are Not Lazy
Remember the limited amount of spoons we have? Now add the fact that it takes twice as much effort for us to complete even simple things. We try harder than other folks, yet we still manage to accomplish less.

5. We Try to Look Our Best
“But you don’t look sick” is one of the most common phrases you hear if you have invisible disease. Well yes, we try to look our best even on bad days when our body explodes from pain. We dress up carefully to cover up our bruises or swelling, take painkillers at the optimal time, and rest before going out. We would love to pass as normal as much as possible! Even if we feel pain, we would keep it to ourselves until the moment we step into our apartment and just collapse.

6. We Don’t Ignore You
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Sometimes our pain occupies too much space in our brains and we simply cannot focus on anything else. Pain can be very distracting and mentally draining, so please forgive us when we can’t give all the attention to you.

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7. We Know Our Illness Won’t Go Away
It’s always there. We can’t escape. And yes, we have researched all the possible options. If there was a cure, we would know about it!

8. We Are Not Drug Seekers
Sadly, we need to explain that both to the doctors and folks around. We don’t want drugs. We want anything to make the pain go away even for a little while. So yes, sometimes our treatment requires taking opioids or medical marijuana. We treat those just like any other remedy. And no, we are not particularly fond of the side effects either.

In fact, as the Cleveland Clinic explains: Addiction appears to be distinctly uncommon in patients without a prior history of addiction. Addiction is a psychological phenomenon that isn’t caused by chemical components of the drugs and typically requires a setting different from the one we have. We take our drugs under supervision and come back home to the loving family unlike the street-users.

9. We Don’t Always Know How to Manage Our Pain
Just because we have been dealing with it for ages doesn’t mean we always know how to tame it. Sometimes, we have very bad days when no previous routines help. We just close our eyes and wish those would pass faster.

10. We Get Super Active on Good Days
Physically feeling good is just about the most exciting feeling we can have! We can do our chores normally, go on a day trip, meet with a bunch of people at a time, and even think of running a marathon. On a good day we are super active and excited with everything, trying to get as much done as possible!

11. We Don’t Want You to Stop Inviting Us Out
No matter how many times we have said “no” we still want to be part of the gang and go out when we really can do it.

12. We Don’t Have a Job for a Reason
Again, we are not lazy. It’s just that we often lack spoons to work on the top of our other activities and daily chores. Besides, most employees refuse to take staff for a few hours per week and tolerate the fact that we can leave at the middle of the day if our pain gets unbearable.

On the bright side though, thanks to technology we can work from home in our own pace, doing various jobs online, selling stuff on eBay or Etsy, learn everything we need from self-help and nursing to design or coding online. If we don’t have a regular job, it doesn’t mean we can accomplish nothing in life. Multiple sclerosis did not stop Vanessa Heywood from creating an award-winning music company!

13. We Don’t Want Sympathy, We Want Acceptance
Instead of making that “I’m so sorry for you” sad face, treat us like equals. It’s not that you should completely ignore our condition, but show us you are ok with it and ready to make small adjustments for us.

14. We Don’t Want Your Medical Advice
Believe me, we have heard enough already and feel frustrated, as they don’t work. Thanks for the thought, but let’s just talk of something else. My disease does not define me. I know a lot of other interesting things, I would love to discuss with you instead.

15. We Need to Know You Are Here for Us
No matter how self-sufficient and independent we try to appear, sometimes we just need you to be here with us and hold our hand on a bad day.

16. We Appreciate You and Everything You Do for Us
You should never forget that. We are eternally grateful for supporting us and making us feel loved!

Dianna Labrien

Dianna is a former ESL teacher and World Teach volunteer, currently living in France. She’s a passionate traveler, slightly addicted to apps and always in search of new ways to make her life simpler. You can tweet her at @dilabrien

Healthy Barbecue Recipe

Healthy BBQ Recipe

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Ingredients

  • 1 8oz can reduced-sodium tomato sauce.
  • 1 4oz can chopped green chiles, drained.
  • 3 TBSP cider vinegar
  • 1 TBSP honey
  • 1 TBSP sweet or smoked paprika.
  • 1 TBSP tomato paste
  • 1 TBSP Worcestershire
  • 2 TSP dry mustard
  • 1 TSP ground chipotle chile.
  • 1/2 TSP salt
  • 2.5 lbs. boneless, skinless chicken thighs trimmed of fat.
  • 1 small onion, finely chopped.
  • 1 clove garlic, minced

Preparation

  1. Stir tomato sauce, chiles, vinegar, honey, paprika, tomato paste, Worcestershire sauce, mustard, ground chipotle and salt in a 6-quart slow cooker until smooth. Add chicken, onion and garlic; stir to combine.
  2. Put the lid on and cook on low until the chicken can be pulled apart, about 5 hours.
  3. Transfer the chicken to a cutting board and shred with a fork. Return the chicken to the sauce, stir well and serve.

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Nutrition

Per serving: 364 calories; 13g fat (3g sat, 10g mono);  93mg cholesterol; 32g carbohydrates; 4g added sugars; 30g protein; 4g fiber; 477mg sodium; 547mg potassium.

Bonus: Zinc (18% daily value), Vitamin A (16% daily value)

Carbohydrate Servings: 1/2

Exchanges: 1/2 other carb, 4 lean meat

Provided by Kendall Taylor of the Valley Schools Employee Benefits Trust (VSEBT) in the June 2015 Wellstyles Monthly Newsletter.

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Kendall Taylor, VSEBT

Surviving Summer BBQ’s

Surviving BBQ’s can be difficult especially when there are so many unhealthy options to choose from. Try some of the tips below to take control of your eating habits during summer months!

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Watch the sauce. Beware! Condiments and marinades can contain a lot of hidden calories. If you don’t have control of the marinade make a conscious effort to control how much of the condiments you are using.  Stay ahead of the game by using this items to watch list. 

Skip the chips. Try to choose a healthier alternative as a side instead of items such as potato salad, macaroni salad, or chips. Bringing your own side can offer yourself and others a healthy item to select from.

Stick to one plate. When attending a BBQ it’s easy to go back for more. Try to stick to one plate and follow the USDA plate method where 50% of the plate is a fruit or veggie, 25% is a lean protein and 25% is a starch or grain.

Choose lean meats. We aren’t always going to have the option to choose what type of meat goes on the grill but if you have the choice try a leaner source of meat (meaning less saturated fat) such as pork, chicken or lean ground beef.

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Walk it off. Studies show that adults who took a 15– minute walk after every meal improved their blood sugar levels in comparison to those that took one 45 minute walk per day.  – George Washington University School of Public Health and Health Services.

Watch List:

Ketchup: 1TBSP = 20 calories, 160mg of sodium

Mayo: 1TBSP = 90 calories, 10g of fat

BBQ sauce: 2 TBSP = 50 calories, 10g of sugar

Honey Mustard: 1 TBSP = 45 calories, 135 mg of sodium

Provided by Kendall Taylor of the Valley Schools Employee Benefits Trust (VSEBT) in the July 2015 Wellstyles Monthly Newsletter.

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Kendall Taylor, VSEBT

Cardiff Researcher: In Five Years, We Could ‘Stop Asthma from Happening’

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Scientists in the United Kingdom have discovered both the cause of asthma and a potential cure. In a breakthrough new paper, they identify calcium sensing receptors as the cells that cause the inflammation experienced by asthma sufferers and identify a class of drugs known as calcilytics as a promising treatment.

“If we can prove that calcilytics are safe when administered directly to the lung in people, then in five years we could be in a position to treat patients and potentially stop asthma from happening in the first place,” said principal investigator Daniela Riccardi, of Cardiff University.

Calcilytics were originally developed as a treatment for osteoporosis. Although the drugs were unsuccessful for their original use, they were proven to be clinically safe. Researchers hope to be repurposing the drug in clinical trials within two years.

While asthma can be controlled by albuterol and steroids, approximately 8% of patients do not respond positively to any treatment. Researchers estimate that this small faction of asthma patients is responsible for 90% of asthma-related healthcare costs.

Click here for more information from King’s College London