Everyone needs a Coach in their corner!

Originally posted Feb. 11th, 2016 on ProHealth.com

coach

By Melissa Swanson

I believe it takes a team to be able to fight fibromyalgia and its evil sidekicks. Each successful team has a great Coach who instructs or trains them in the fundamentals and directs strategy. I was blessed when I met Celeste Cooper. She became my teacher, my mentor and my friend.  Others have not been as lucky as me to have a Celeste to coach or advise them.

“When I was first diagnosed, I wish I would have had someone who understood Fibromyalgia. Someone that not only was living with Fibromyalgia but trained on how to help with the long list of questions I needed answered.”   Tami Stackelhouse

What can I do to manage the pain? How can I sleep? What medications/ treatments should I try? I feel so guilty missing out on so much in my daughter’s life. I just want to be me. What doctors should I see? What tests should I have done? I have been diagnosed with so many other syndromes/diseases. How do I treat them? Will it help my fibromyalgia? Will I get worse? These are just a few of the questions we have when we finally get our diagnosis.

It is easy to go online and research all of these questions, but how do you know what is reputable information?

Tami Stackelhouse is a fibromyalgia patient, an advocate and a graduate of the National Fibromyalgia and Chronic Pain Association Leaders Against Pain Scholarship Training.  She is also an author, coach, speaker, certified Fibromyalgia Health Coach and founder of International Fibromyalgia Coaching Institute.

What is a Fibromyalgia Advisor or Coach?  
A Fibromyalgia Coach is someone who is trained to provide support specifically for fibromyalgia patients. It’s a bit of a cross between health coaching and life coaching, with a focus entirely on helping clients live as well as possible with fibromyalgia.

Why do we need fibromyalgia coaches/advisors?
There are approximately 10 million (2-4%) Americans who have Fibromyalgia. According to PAINWeek.org,”There are 100 million people in pain.  There are 4,000 pain specialists. That’s 25,000 patients per pain specialist. There are simply not enough pain specialists to go around.”

“A novel study published in the American College of Rheumatology (ACR) shows that smaller micropolitan areas of the U.S. – those with less than 50,000 people – have very few or no practicing adult rheumatologists. In some of these areas, individuals have to travel more than 200 miles to reach the closest rheumatologist.”

It’s bad enough we have to find someone to believe us, but add the shortage of pain doctors to the fact that when you get an appointment with them, you get a whopping 15 minutes to cover all that you need to talk about.  We know that it helps to have good caregivers on our team. I have a GP, rheumatologist, neurologist, chiropractor, acupuncturist, myofascial release physical therapist and a pain management doctor.

None of them know how I really feel physically or emotionally living with fibromyalgia and its evil sidekicks.

“As a physician, I feel we so need people who are patients themselves, who are patient advocates and can guide and teach other patients self-care, what to ask their doctors and offering emotional support.”  Ginevra Liptan, M.D.  Author: Figuring Out Fibromyalgia

Tami Stackelhouse had been coaching clients since June 2009. A month after Tami published her book Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain, her one-on-one coaching practice was full. “It was the most awful feeling to have people email me saying that they had read my book and wanted to know how to work with me to get more help and have to turn them away. I knew I had to figure out a way to duplicate myself. There was no way I could help everyone if I tried to do it alone. So I decided to try teaching just a few people how to do what I do.” says Tami

In response, Tami created the International Fibromyalgia Coaching Institute(IFCI).  It is the first program tailored to helping those with fibromyalgia.

This past October, I joined eleven others from the United States and United Kingdom in the IFCI’s 16-week program.

We studied how to help clients come to terms with their fibromyalgia diagnosis, understand their treatment options, implement prescribed lifestyle changes, reduce fibromyalgia symptoms and navigate the often confusing medical system. The course consists of live and self-paced learning, mentoring and coaching practices.

What happens in a coaching session?

“Most of us know what we should do; it’s doing it that’s the hard part.” ~
Tami Stackelhouse

Coaching appointments are usually once a week, done over the phone and last typically 45 minutes. During coaching sessions, the coach and client will talk about any challenges that have come up since the last session and look at current habits, then focus on setting goals to incorporate healthy habits into daily life. Together, the coach and client will decide what to focus on. At the end of each session, the client will have one or two items to work on until your next session.

Does it work?  
Read what 2 of Tami’s clients say about their coaching experience.

“I’m really so pleased to be able to have regular coaching sessions and work on my health/healing with someone who understands and can give spot on advice! I think it will make a big difference! — and I won’t have to try to be accountable just to myself (doesn’t really work a lot of the time) phew!” — Eleni, Australia

“Working with Tami gave me hope for healing for the first time in years. My fibromyalgia has been very chronic throughout my life, and Tami’s gentle way of listening and supporting me helped me realize how much discomfort I had been tolerating. With her guidance, I’ve been able to acknowledge my challenges and build a support team that is helping me with the special care I need for well-being and peace of mind.” — Christine

On January 31, 2016, the International Fibromyalgia Coaching Institute celebrated with graduating its first 12 students. They are living with Fibromyalgia, ME/CFS, Myofascial Pain Syndrome and many more of the
co-morbid/co-existing conditions, and they are ready to start their new career
in doing what they love to do most ~ helping others who live in chronic pain.

These trained coaches/advisors have “been there and done that”.
“Coaching exists to help people find a better quality of life.”

~ Jan Chambers


Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in “Living Well with Fibromyalgia” and the NFMCPA “Advocate Voice.” She’s a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.

You can find Melissa at:
Facebook: www.facebook.com/survivingfibro

Blog: www.fibrowarriorslivinglife.com

Twitter: MelissaSwanso22

Living Life to the Fullest: An Interview with Meshea Crysup

Originally published on June 7th, 2016 at ProHealth.com

Meshea Living Life to the Fullest: An Interview with Meshea CrysupCrysup was a name that often appeared when I started my “fibroLIFE” journey. I was directed to her site to learn more about living with fibromyalgia. Meshea is an example for all of us on how to live our “fibroLife” to the fullest.  I am honored that she was willing to take the time in her busy schedule to share her story with us.

“Meshea works to educate others, including physicians, that fibromyalgia is real and affects the quality of life for those of us who live with it. It is her mission for our physicians to have access to materials and research so they can learn as much about it as the patients they see. She wants to see collaboration and continuing medical education for effective treatment strategies. ~ Celeste Cooper

 

Melissa: How long do you remember showing signs of fibromyalgia?

Meshea:  I was considered a “sickly” child and remember waking up at night screaming when I was only three years old because everything – my arms, legs, hands – hurt.  I never had the stamina of my cousins and ended up being “sick” after spending any time playing like a “normal” kid.  I had severe allergies, insomnia and anxiety. Vulvodynia, IBS, migraines, ulcers and bladder spasms have plagued me since my early teens.

Melissa:  How did all these symptoms initially change your life?

Meshea: While I’ve never known life without the symptoms, I was ambitious and driven.  By the time I was 14, I had a manager and a financial backer, and I was making records in Nashville; unfortunately, figuring out travel as a minor was a significant chore, and I was a has-been by age 15.

I had a free ride as an Illinois State Scholar but that was NEVER really explained to me really, so I became a hairdresser to help get me through college. I graduated with a 3.82 GPA in spite of my home life, playing music in bars on the weekends to afford my car, etc. (No, I’m not bitter, but I made sure the same thing did not happen to my son!) After college, I continued to play music, got married, had a baby, became an RN — graduated top in my class from an accelerated RN program with a 3.79 GPA.

But I was never well. I hid it. I blamed it on stress, my horrible childhood, my horrible marriage, then how many hours I worked and went to school…the weather, whatever “bug” was going around. I still played music, managed  the bookings, kept up with new music, etc. I mowed the lawn, I stayed up nights sewing, quilting, or writing because I could not sleep. I was always sick—IBS, TMJ, that god-awful pain in my hands, legs, etc., headaches, allergies, rashes, ulcers, bladder spasms, panic attacks, horrible depression—always tired, always run down—but always “on.” I was the “life of the party,” the fun one to work with and for — as long as you did your work. And I was so, so sick.

I got divorced. I got remarried. I was in the hospital for this and that, but tests never showed anything other than the things I’ve mentioned and three ulcers that kept me throwing up on a regular basis. I got sicker and sicker, and hiding it became harder and harder — and then I collapsed at work. It took more than a year after that to finally get a diagnosis. I tried to go back to work three times, but would end up unable to function — literally. I was so bad that I couldn’t get out of bed to go to the restroom at night without help. I had to have help bathing and dressing at times. I couldn’t cut my food at times. I had no endurance for walking.

The fog was my worst symptom by far because it robbed me of my entire identity: work. I had hidden the panic attacks and mental fogginess behind “acceptable” illnesses my whole life, but I was so bad now, there was no hiding it. I was 32. I couldn’t manage my checkbook, manage business calls, or manage ordering take-out even. My youngest son, Michael, was showing signs of some illness (he has Duchenne’s muscular dystrophy and is schizophrenic), and I could not care for myself, let alone him. The boys went to live with their dad and Michael and I were both finally diagnosed the same year.

I read about fibromyalgia in a magazine and figured out that’s what I had when I was 28. I showed the magazine article to one of my trusted nurses and friends, and her response was, “Oh, Meshea, that is you, but you can’t tell anyone because they think these people are crazy!”  When doctor after doctor kept telling me there was nothing wrong with me, I went to the bookstore, found a book about it, found the author’s name, and called for an appointment. He wasn’t taking new patients, but he told me who was.

Dr. David Knapp was four hours from my home in Columbia, Tennessee, but I finally had a diagnosis. Dr. Knapp told me I already knew what was wrong, and I could keep trying to live like I didn’t have FMS or I could learn to live with it. The first would mean continuing to cycle—getting well enough to work only to end up unable to care for myself, and it would happen more and more quickly, OR I could finally start living the way someone with FMS had to live.

So, seven years of therapy in which I had to start each session with “God made human beings, not human doings,” another divorce, my youngest son getting worse and worse—but damn it, I was going to LIVE.

I still equate my self-worth with what I can or cannot do. I’m a neat freak who can’t keep her house that way anymore, so I’ve learned to accept it to a degree. There are so many things I cannot do anymore, but I can keep TRYING to make a difference. While I still have horrible brain fog and pain, I have found that by not working outside the home and by not trying to do more than I can, I am able to care for myself—so I am better, most of the time.

Melissa: What is your life like now?

Meshea: I sleep when I have to, because I am blessed not to have to work, which so many others are not. I stay as active as I can but try not to over-do. So I no longer leap the world in a single bound before most people are out of bed. I live a very simple life. I rest a lot. I clean what I can when I can—not me at all.

I rest so I can feel the best possible when Hubby gets home; I rest so I can go to dinners with him. I do my bills when I can think. I make phone calls when the anxiety and fog allow me to. I drive when I’m safe—never far alone because I can become unsafe to drive very quickly.

I avoid things that make me flare as best I can so I can do as much as possible with Hubby, and if there is anything left in me to give, I try to make a difference. I have to remain “social” or I get afraid to even leave the house. So, with Hubby’s complete support, I eat out several times a week with friends. I also play Yahtzee with a group, have book club and Bunko, all of which I can bow out of if my health requires me to. I go to movies, plays, shows when I can. I travel once or twice a year with family and friends, usually to the Smokies or Nashville.

But, everything I do has to fit into the “rules of LIVING” with FMS. Adequate rest, not over-doing, etc. So, it’s a simple LIFE but a blessed, good one. Not what I planned, but happy, and better than many others.

Melissa: How is your relationship with your family and friends?

Meshea: Fine…I learned a long time ago that people are going to believe I’m faking, lazy, nuts, etc., no matter what I say or do, if that is what they want to think. So, I just do not go around those people. Family is who I choose, not a group I was born into.

If new people cannot handle that I have to cancel plans, cannot keep up with all they want to do, have to rest, travel like an “old person,” etc., then I let them live their lives and I move on, sharing mine with those who do understand.

Melissa: Tell us about your journey and work as an advocate.

Meshea: I began writing online, using a pen name, around 2000 or 2001. I joined existing groups online and shared what I was learning. Eventually, after my second divorce, I started writing under my real name. I had so much in my head that I could not get out because of the fog, fatigue, pain, etc., so finishing real projects eluded me until my friend Kathy Keeney was able to work with me pretty much full time. fibroLIFE, which had been in my head, became a reality.

We developed a series of symptom tracking tools until we hit on one that was really “doable” for those with FMS. We completed my book on what it takes to get diagnosed. We had events to encourage those with FMS to socialize, understand their FMS, help those in their lives understand FMS, and encourage activities like jewelry making, couponing, and teaming up with non-fibro people (like Kathy and I had done) to manage home businesses like Pampered Chef, Tupperware, etc.

We spoke to organizations and conferences. We had other plans, but Kathy had to go back to work and I ended up moving to Vicksburg. I have not found another “Kathy,” – not that I could ever replace her – but I have no “non-fibro” counterpart, so it has been a struggle figuring out just how to continue. fibroLIFE’s original Facebook page continues and is run by some ladies who are perfect for that type of outreach. I have a different Facebook page, a blog, and a website, and I am “feeling my way” by myself.

I have some ideas I have been floating around with some trusted internet and fibro-world counterparts. I am looking for like-minded people in both the fibro- and non-fibro-world to team up with and help me to create tools and plans and then implement them. I want to help those who are so overwhelmed get diagnosed, find the treatment plan that works for them as quickly as possible, and help them move on to LIVING a positive, fun, fulfilled LIFE.

Melissa: What do you feel is the most challenging when helping those with chronic pain?

Meshea: They are overwhelmed, and we have to stop adding to that. We need to make it easier for them, not more complicated.

We have tons of books, many saying basically the same thing, which are brilliant guides for recognizing FMS, finding the most effective treatment plans, etc., but few physicians are taking them and making them their “play book.” WHY? Doctors are still saying, “We really just don’t know much about it…” YES, WE DO! We don’t have to know exactly what is causing it to implement the things we KNOW are helping people who have it! I want to change this!

Melissa:  What treatments do you recommend?

Meshea: I am for all mainstream treatments and some alternative treatments. FMS is so varied that I fault no one who has found something that works for them, and I accept that treatment plans are going to vary. What I do, however, is SHOUT from the rooftop about the snake-oil peddlers. If someone says, “I’ve cured FMS,” run the other way.

Melissa: You are an inspiration to so many.  What advice do you give newbies?

Meshea: Learn the basics, implement the basics, and build on the basics as you are able to.

Remember your doctor works for you, so you can hire a different one if that relationship isn’t working out for you.

No matter how bad FMS is—and it is BAD—if you will look, you will find someone worse off than you. Use that to help you COMMIT TO CHOOSING EVERYDAY to LIVE your fibroLIFE to the fullest.

Stay away from toxic people and continue to dream, plan, set goals, socialize, etc.

Melissa:  What do you see in your future?

Meshea: I am truly reaching out to others who see FMS as I do, have the same passions but different strengths, so we can form a team to make the best use of our talents and help as many as we can. Any help making this happen would be appreciated.

“Laughing is my most used coping mechanism. I CHOOSE to be a happy, positive person. I choose to make the best of it.” ~ Meshea