The 7th Stage of Fibromyalgia.

 

I found an article that was written in 2014 by a woman named A. Wise. She talked about there being six stages of fibromyalgia. I read through them and was a bit stunned when I reached the sixth and final stage she described.

Let me do my best, to sum up, *Ms. Wise’s six stages;

  1. You notice something is wrong. You hurt and are tired. You may begin to research to find out what is wrong with you.
  2. You are in a lot of pain and are taking some sort of medication for it. You are exhausted every day.
  3. You are in constant pain and always fatigued. You go to work, come home and sleep.
  4. Unrelenting pain and fatigue. You call into work more than you are physically there. You spend most of your days in bed. At this time people beginning to doubt your illness because you could do things in stages 1 – 3 that you can no longer do.
  5. You have just quit or have been let go from your job, you are struggling to make ends meet. You are applying for long-term disability.
  6. You can no longer hold down any kind of job. Simple tasks you took for granted now drain all of your precious energy. Now you are not only dealing with pain, fatigue, and medications but the side effects as well. You probably now know more about fibromyalgia than your doctor. You find you are without hope.

This is a pretty abbreviated version of the six steps, but I’ve summarized the points that Ms. Wise laid out in her article. Stage number six pretty much ends with you being in constant pain and without hope. I absolutely disagree. There has to be a seventh stage because  I am not being left in stage six with no hope!

(I believe the seventh stage of fibromyalgia is acceptance. *K. Johnson)

Stage seven for fibromyalgia sufferers is acceptance. Acceptance doesn’t mean giving up. It means facing your illness with a new perspective. You find peace with that acceptance. Anger, fear, hopelessness all but disappear. You stop feeling like you are a worthless human being and you find some purpose in your life.

Let me be clear, finding acceptance in your life doesn’t mean getting back into the 9-5 daily grind! It does not suggest keeping your house spotless, cooking meals every day, and running errands on top of it all. That part of you is gone. GONE. Fibromyalgia took that away. You are seeking your purpose.

The purpose you must find is a balance between welcoming the new you and the desire to keep learning about your illness. You must become your own encyclopedia. You must see new things in life that are interesting to you and can be done with your limitations. Find a balance. That balance creates peace and leads you to your unique purpose in life.

Finally, these stages Ms. Wise talks about are very real! People with fibromyalgia move through these painful stages. I just refuse to stop at stage six. I have moved into stage seven; acceptance. I did not want fibromyalgia, I did not invite it into my life, but it is now mine, and it is here to stay. Fibromyalgia is a chronic condition. I will accept it, make peace with myself, and I will find purpose.

 

Live your best life!

( The 7th Stage of Fibromyalgia first appeared on I tripped Over a Stone.)

~Kim

*When sharing the information in this article, please give credit to the authors of the Stages of Fibromyalgia. Thank you! Please share.

Be.

We have all welcomed in the New Year and are coming off of the excitement of the ball drop on 2017. I did make a promise to myself, a resolution of sorts. Nothing fancy and not about dieting or working out! I want to “be.”

This year I want to “be” the person that I would want in my life. The wife, the friend, the sister, the aunt, the neighbor, the advocate, and so on…  I want to “be” the person I’d like to hang out with. Just because I want to “be” all of these things does not mean my life is perfect, my weight is ideal, or my lifestyle doesn’t need work. I don’t have all the answers, and there are days when I do battle just to make it through. But I can still “be” a good person, a person even you may want to know!

My sister suggested writing down one thing you are grateful for and placing it in a jar every day of the year for 2017. On New Year’s Eve, open your jar and see all you were grateful for in 2017. Wonderful idea! But let’s face it, 365 things to be grateful for? I’m not Oprah. I like the idea though, but I’ll tweak it.

I am indeed writing down one thing every day (OK, so I am 3 days in) that I want to remember of 2017. There will be things I am grateful for, quotes that I love, places I’ve gone for the day, and laughs with my hubby… all sorts of things that I will want to remember about 2017. And when I get to the end of this year, I will open my jar and every slip of paper will make it into a journal. A smash book to be specific. If you do not know what a smash book is, take a look at the net. It is the coolest thing!

There are many interesting people I meet and want to remember, some of them, are you! Yes, you, reading my blog! Your name will be going on a piece of paper and into my jar. I find that when I surround myself with people who have strong core values, they make me “be” my best self. I am present and engaged, not challenged to be perfect and right.

So here goes nothing! Remember the good, don’t dwell on the negative and “be.”

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Live your best life!

IMG_0325~Kim

 

Pause with patience in 2017.

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If there is one thing I have learned from fibromyalgia, it has been this, to pause before reacting requires patience. I was once guilty of going 100 MPH out of the gate to condemn what I saw as bullshit. I called it how I saw it. I was tired of the “emotional” excuse, and the “tired” excuse. The “I didn’t know” excuse. I was tired of tired excuses!

  • “Well, Bobby did not really mean to break my favorite bowl, he is just so emotional.”
  • “Cindy didn’t mean to call you a bitch, she just gets so emotional.”
  • “Angie didn’t mean to bite Charlie, she is just tired.”
  •  “Jimmy didn’t mean to rob that gas station, he didn’t know any better.”

I will bet you the farm that Bobby DID mean to break that specific bowl and Cindy called you a bitch because she wanted to. As for Angie, she’s 8 and the next time she bites you bite her back! Jimmy needs a trip to the correctional institution.

Now, this little ‘quirk’ of mine worked well in my chosen profession. I was in corrections. I worked with adult males coming out of the prison system to re-enter society. I was the Director of a Work Release that aided them in making this a successful process. We worked on everything from job skills, housekeeping, and rebuilding family relationships to writing resumes and talking professionally to a potential employer on the phone! I believed I was extraordinarily fair and non-biased, but if ever an excuse was needed to explain away unacceptable behavior, the cuffs went on and back to prison you went. I would always entertain another request written by the prisoner to re-enter work release, but I would not always grant it. As I learned from many of my past residents, work release was much harder than prison. My staff used to tell the incoming residents, “See that little blonde over there? She is the Director, and she is fair. She may look harmless, but you don’t ever want to see her mad.” (Now that made me smile.)

I loved that job! I saw so many men re-join society that became successful fathers, husbands, and providers. It was an intense job. At times, heartbreaking, when the disease of addiction ruined one too many lives. There were times it was frightening. When a man feels as if he is backed into a corner, you must be sharp with your ability to de-escalate a situation. But for me, it was everything I had trained my entire life for. All the jobs, the schooling, the practice, the patience… yes patience for it to be the right time for me to step up into a position that required so much of me. It required all of me, for the men, the staff, and the safety of the community.

I was riding in a little two-door car on a sunny Saturday afternoon. I was going to adopt a kitty with my then fiance’ … a Tahoe hit the side of the vehicle I was riding in. I hung on to some semblance of a life for three more years until my doctor had me medically removed from my job. It was over. Fibromyalgia won. (Or so I thought.)

I have learned patience. I have gained acceptance. Life is not a race. There is no loser or winner. There are many paths to take to get you to where you need to be. I am in charge of me. In real life, you don’t get to act without seeking responsibility for those actions. How I react is my chosen superpower. I control how I react. I have decided to pause with patience.

When you realize you must pause before speaking, you give yourself time to re-assess the situation, the outcome, the volume with which you will talk. This is the ultimate tool for feeling some kind of control in the world you now live in. A world that may feel very out of control at times.

I would just ask that you try it, pause.

~Kim

 

Practice Koselig

Koselig is a Norwegian word, loosely translated meaning cozy. Koselig is much like the Danish word Hygee also meaning cozy. Since I am of Scandinavian descent, heavy on the Norse (yes we have lutefisk for Christmas), we will talk about Koselig. The practice of embracing all things cozy! If you practice Koselig, the winter blues may be held at bay! Winter is here so why not give it a try?

Koselig is a state of mind. A feeling of enchantment with all things that make you feel cozy. A warm fire, fleece blanket and a cup of cocoa. Koselig is not only things, but a person can also make you feel Koselig, a gathering can, a walk through a park on a wintry day can. When was the last time you went sledding, ice skating or skiing? Embrace winter!

With fibromyalgia, you may not always be able to participate in outdoor activities. You can take part in Koselig! Go with a big blanket and a huge thermos of hot cocoa and watch. Take delight in the laughter of sheer joy in the snow. Did you purchase that warm outdoor coat? What about those winter boots? The stocking cap, scarf, and mittens? If you live in the midwest you must! Spend the money and embrace Koselig!

Take a good look at your home. Is it cozy? No? Well, break out a little Koselig! Warm throws for the sofa, and knitted pillows. Warm lighting and awesome wool socks! No fireplace? Buy an electric one, great for those snowy nights when you are watching a movie or playing board games. Is your kitchen stocked with popcorn, snacks, and warm beverage options? There are many more warm drinks than coffee and hot cocoa. There are teas, ciders, and drink mixes. Explore. A piece of dark chocolate and a cup of Russian tea when it’s 12 degrees outside isn’t going to harm you, we are working on mental wellness here!

Russian Tea is one of my favorite winter drinks, you may substitute with sugar-free drink mixes or with something like Truvia, from the sweet stevia leaf. Most of us cringe when we see that a recipe calls for a sugary mix or, my lord no, sugar in itself! Sugar in its raw form should not be your biggest worry at this point in your life. Besides, you are not drinking the entire mixture containing sugar, you are having a few tablespoons.

Here is the recipe for Russian Tea, courtesy of allrecipies.com

 

 

The holidays come and go. We are welcoming the New Year again and again. Try something different to get through the long winters, especially after the holidays. How about Koselig being one of those? From my home to yours, may your winter be filled with Koselig!

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After a game of snow football! My husband with a few of our nieces and nephews.

 

~Kim

Mudita – finding joy in the joy of others — Picnic with Ants

“Mudita is a word from Sanskrit and Pali that has no counterpart in English. It means sympathetic or unselfish joy, or joy in the good fortune of others.” (1) I bring up Mudita now because those of us who are sick often find it very hard not being able to participate in celebrations this time of […]

via Mudita – finding joy in the joy of others — Picnic with Ants

I must bring this blog to your attention! I enjoyed this blog and have found so many informative posts on this blogger’s site!  This post, in particular, I must re-visit often and learn the true meaning of Mudita, finding joy in the joy of others.

Christmas was a perfect time to practice Mudita. I’m great at empathy! I can and do empathize. I have that down. But to truly experience joy, sheer joy at another person’s good fortune is not always so easy. I want to say I practice Mudita in my personal life but that would not be speaking the truth. I can promise I will always work to practice Mudita in my everyday life. Honestly, it can be difficult.

For example;

“I sure am glad you won the Powerball!”

“So cool you got a brand new car!”

“Delighted your husband bought you such a beautiful coat!”

Now, see it from that person’s perspective and feel an overwhelming joy WITH them.

You get my drift… Wendy at Picnic with Ants does a much better job of explaining Mudita. So I am going to ask you to click on the above link and read about Mudita.

~

Tomorrow we will talk about Koselig, a Norwegian word. (I am a Scandinavian gal!)

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~Kim

Today is “do-able”.

I was officially diagnosed with fibromyalgia in 2001, but a car accident in 1998 was the catalyst for my chronic pain. By 2011, I was pretty confident in my ability to handle my fibromyalgia. I was great at scheduling out my household duties with rest included in the schedule. I had one primary doctor who I liked. She prescribed my medications and understood fibromyalgia. I was happily married since 2004 to a man I had known since childhood, my brother’s best friend. My life was “do-able”, that is a big statement for a person with fibromyalgia.

Around Christmas of 2011, I started having problems with my memory. I often felt light-headed and giddy. I was getting heartburn all the time. By the summer of 2012, I was mentally vacant. I had lost a major amount of weight. I was saying and doing things I had no recollection of. I would be reminded of what had taken place but I could not remember … by September 1st I was admitted to the hospital with severe idiopathic pancreatitis.

Pancreatitis is known as the drinking man’s disease, except I am not a man and I did not drink enough to do this to my pancreas. I contributed, don’t get me wrong. I drank alcohol, I had begun to eat poorly, and I smoked heavily. But my pancreas was kinked and had a calcium blockage that was shutting down my pancreas, basically, my body and brain were starving for nutrients. I barely weighed 100 lbs. My triglycerides were sky-high, I was pre-diabetic, my blood pressure was high and my gallbladder needed to be removed. All of these things were contributing to my pancreatic problems.

I survived seven surgeries and twelve lengthy hospital stays. On two different occasions, I was asked by the surgeon what lengths I wanted him to go to preserve my life. My husband, myself and the surgeon did not believe I would make it off the table. I signed a DNR (Do Not Resuscitate) both times. I was so ill I didn’t think I could take much more. My husband and I said our goodbyes but he asked me to promise to try to wake up. I promised I would try. Somehow, I did wake up. Every time.

Recovery was a slow process, I finally got all the tubes and stents removed from my stomach in July of 2015. Now, what was I going to do? I never planned on surviving. I could not remember much about the past 4 years … just bits and pieces. I was utterly lost.

I found adult coloring books and began using them. It helped me make choices, the colors to pick and the pictures to color. It was mind work and it was working. I found Zentangles next. You learn different patterns and you put them together in a picture of sorts. This was teaching me spacial recognition. I felt my brain begin to work again.

In September of 2016, I ended up with a severe fibromyalgia flare that just would not stop. I was so heavily medicated for those years during my pancreas problems my fibromyalgia did not surface. But it was now back with a vengeance! I couldn’t sleep, I couldn’t concentrate, I felt as if I were walking through sand. Just walking to the bathroom and back to the sofa exhausted me. I was hospitalized with severe anemia. I was told I was close to having a massive heart attack. A heart attack? Unbelievable. I had a blood transfusion and iron injections. I felt better almost immediately. I now take B12 injections and an iron supplement.

I have been hospital free since September of 2016. I wanted to share my story with you because I have had to start over with my journey towards “do-able.” I am well on my way to getting my fibromyalgia back in check. I did it before my pancreas problems, and I will do it now. I tackle one day at a time until I reach “do-able.”

IMG_0255~Kim

 

Spoons, Clean or Dirty?

 

I’m sure you have all read the spoon theory? I love the spoon theory. No matter what chronic illness you have or who of you know someone with a chronic illness you have to read the spoon theory. I will give you a quick synopsis.

If we look at activities in our lives and the effort it takes to complete an activity, think of the energy needed as spoons. You get so many spoons (energy) per day. A healthy person has an unlimited number of spoons, they use up a spoon, another one is there waiting for them. Unlimited. A person with a chronic illness, such as fibromyalgia, has a limited number of spoons to use each day, 10 spoons. Let us say getting up and brushing your teeth takes 1 spoon, showering and getting dressed takes another 3. Making breakfast takes up 1 spoon. Walking your dog takes 3 spoons. It’s not even noon and the person with fibromyalgia has already used 8 spoons. There are two energy spoons left. How are you going to clean your house, get groceries and make dinner? You are not. The healthy person can, not the person with fibromyalgia.

So use your spoons wisely if you have fibromyalgia. You may want to shower every other day or take a relaxing bath in the evening. You will want to schedule household chores, breaking them up so you only clean one room a day. De-clutter. Don’t waste energy on dusting all those trinkets. Taking walks should never be given up on, you may want to take shorter, more frequent walks to conserve energy. Errands. Never ending errands!!! Get familiar with sites that deliver. I order everything I can on the internet or hand a short list to my husband. I have found that ordering household items keeps me with-in the budget I set for the month. There are no impulse purchases. Meals, make simple meals. Freeze meals for days when you are unable to cook. You may want to put aside a day to make soups and casseroles. Ask your partners and kids for help! There will be days, as my husband told me recently when all the spoons are dirty! So try to prepare for those days too.

 

Just breathe. Stay Strong. You got this!

IMG_0201~Kim