Who Cares?

Originally posted on Prohealth.com on October 8, 2016

whocaresWe have all done it. We have lied or told half truths when asked the question, “How are you?”.

How many people in our lives do we share our true level of pain we are feeling every day, physically and emotionally?

As I walk down the school hallways every day to refill my water bottle I pass a Teacher who always says “Hi!” and asks “How’s it going?

I smile (a forced smile), replying “Hi!, Good.”

I caught myself in my head the other day saying “Liar, Liar Pants on Fire”. I am anything but good.

When asked how are you by a co-worker or a store clerk it’s more of a common courtesy question. Am I being rude by not responding when asked how I am doing? Or is it okay, since they are not asking for real because “How are you?”, is simply a greeting not an invitation to unload your daily list of complaints.

Can you imagine if I replied, “My neck and back are causing me a new intense pain. It hurts to turn my head. It is causing headaches. I can’t get the right balance between not able to go to the bathroom or having to go to the bathroom ASAP. My right hand has started hurting when using scissors, etc. My knee feels like it is going out every time I try to stand. I had to be helped into the bathtub this weekend.”

If we began answering the truth how long would it take for that person to stop asking?

I get it. I have known people who tell everyone absolutely every negative detail in their lives. It gets old.

What about our family or the people that live with us?

Eventually for many of us those that we live with stop asking. Maybe they just assume they know the answer already. It doesn’t mean they have stopped caring.

My daughter is 16, she is busy surviving high school. I don’t expect it of her.

I mentioned to my husband awhile ago that he doesn’t ask me how I am feeling any more. He said, “I don’t have to, I can tell by how you get out of the chair and how you are walking.”

Ok, so he sees it but that really isn’t what is needed.

The past few weeks I have acquired new health problems and a very high level of pain. It has kept me from doing things that I would normally push through and has brought me to tears daily.

Then just this weekend we were hosting a cross country bon-fire and I was asked, “What do you need help with?” I muttered under my breath, “Just end it.”

It has crossed over the line of just physical pain and is now affecting my emotional well-being.
I am to the point where I have to let the truth out because if I keep answering “fine,” I will find myself on the road to depression.

Are we more likely to open up about physical pain than when we are feeling depressed?

I think it is easier or more acceptable for someone to comment “my knee has been killing me” than “emotionally/mentally I am …”

What if someone asked, “How are you today?”, and we replied, “I want to jump.”

Can you imagine how others would react? Instead, we answer fine, good or in my case on crummy days, “peachy”.

What if there is no one you can tell the whole truth? No one to listen to you cry? Crying alone is one thing but crying in a room with others without any reaction is being alone.

Often we stop sharing the truth when we answer because it is easier for us. It’s much harder to share our long list of ailments. We want to be polite. We don’t want to ruin the other person’s day. We don’t want to be “a downer” or “negative.”

Those living with chronic pain such as fibromyalgia often become isolated. It is so easy to focus on our pain. It’s easy to feeling alone when you can’t talk about how you are really doing.

Thank goodness for support groups where we can share the truth of how we’re really feeling.

Everyone needs someone in their lives where they can share the truth to the question…

“How are you.”

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