Writing With FIbromyalgia: Choose to Make Every Day a New Start

First Posted ON: DECEMBER 11, 2019 

 

IN: WRITERS ON WELLNESS

 reproduced Here 

on Painfullyliving.com 5/15/2020

Pettit Lake Sunrise

Photo credit Pat Zammit

After a three-year slide into brain-fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, fatigue so deep that it felt like all the iron had been taken out of my blood, and spiraling anxiety, I was diagnosed with fibromyalgia.

Being I was in peri-menopause, I chalked it up to the change in hormones.

I asked my friends (teachers and those around my same age) and they had similar issues of being tired, stressed, anxious, and waking up as if by the alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them had, so thought I may have injured myself.

Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares.

Doctors Told Me My Anxiety Levels Were Normal

I reported to my OBGYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me I was fine, I just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OBGYN.

She said that it was pretty normal to have the anxiety levels I was experiencing. She put me on Lexipro 5mg, which seemed to help at first. Then the following start to the school year, things worsened, so I went on a higher dose. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.

My family circa 2010.

My Doctor Thought I was Just a Stressed-Out Mess

I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.

My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us.”

So, I went to my general practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.

When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that “…since you have this in your head, we’ll have you do the test.” I could tell he felt I was just a stressed-out mess.

However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.

One thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. However, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.

My daughter and I teaching my 

granddaughter how to swim.

The Deep, Gnawing Pain Returned and Got Even Worse

This brought me to the end of a very stressful school year (many challenges and changes), and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, the pain returned—a deep, gnawing ache that began in my legs.

No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes looked to rival the last year as far as stress was concerned.

Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell my brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.

Finally, I Was Diagnosed with Fibromyalgia: A Relief

Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.”) When the blood work came back, he said, that this could possibly fibromyalgia.

I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this fibro thing was. Also, the reviews on the meds like Cymbalta scared me to death.

By December 7th, I was on long-term leave and gave in after really wanting to avoid taking Cymbalta. I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed).

Officially Diagnosed with Fibromyalgia

At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved for the diagnosis because it meant that I would be eligible to get into the program and in my mind, get back to living.

My 6th-grade students writing in our classroom. 

We have 1:1 Chromebooks 2017.

I Prefer to Handle My Fibromyalgia Symptoms in My Own Way

There was a time that I listed a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.

I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).

I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.

Issues I have that can go from light to severe and anywhere in between at any given moment:

• Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
• All-over muscle ache. When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
• Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
• Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
• Deep sadness: I don’t feel it’s depression because it comes and goes.
• Aversion to strong smells, bright lights.
• Big fluctuation in body temperature, especially in hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves.
• Hands and feet edema.
• Gripping of jaw/mouth: I’m constantly opening and stretching my mouth. I’ve even started to massage the inside of my cheeks/gums with a finger.)
• Dizziness/nausea/headache that just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
• Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
• Acid reflux: I went through a Nissen Procedure 2016, but it really didn’t do much besides make my stomach hurt all the time.
• Bowel issues: Diarrhea to constipation and back again, never really “normal.” However, I think this is more due to supplements and what I eat.

Why I Now Have a Blog About Fibromyalgia

Why I decided to start a blog about my experiences: I did not know what fibromyalgia was until I was diagnosed this past November 2018. Being the teacher/learner I am, I began to research and found great resources (some really bad).

I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to “manage” it so that I can live my life FULLY, on my terms, even while having pain.

I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.

In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then that’s my purpose. If no one reads it, it serves as me doing developing what I love (writing) and helps me to process my journey.

Me writing after a day of paddling 

at Algonquin Provincial Park 2016.

How I Manage Writing with My Fibromyalgia Symptoms

How fibromyalgia affects my writing: As I’m new to taking time for myself to focus on my writing and still seem to be going through some ups and downs with fibromyalgia, I can give you what I’ve done so far.

I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Had-to doesn’t work well for me or the fibromyalgia it seems. I did the had-to for so long.

So, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.

I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once “I had the time.”)

I have my writing area set up. I love to sit looking out at the lake (I’m lucky to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.

Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written “off-my-plate”, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)

I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).

I’ve always found inspiration from writers. I love to watch author interviews on YouTube. Currently, I’m taking a fiction class with Neil Gaiman online through MasterClass.com. His insight and talking about the thinking behind his writing ignites me.

To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)

I want to be the "fun" grandma, 

present and active. 

The Goal of Writing: Not to Impress, but to Connect at a Heart Level

Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.

My first lesson was always for them to reflect on what they “know about, care about, and are interested in”. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.

Instead of wanting to impress as the goal, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would “get us.”

So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.

Writers with Fibromyalgia: Choose to Make Every Day a New Start

If you’re diagnosed with fibromyalgia: Get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.

I chose not to complain constantly about the issues that come with fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.

Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.

I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with a “I’m starting afresh.”

I’ve written and will be writing more blog posts about what is helping me live my life FULLY despite having pain. For me a big one is a wonderful yoga studio that focuses on healing and being well as well as community, breathwork/meditation/EFT to help calm my brain, learning more about brain plasticity and ways doctors/scientists/everyday people are using it to help bring about positive changes in nervous system disorders/diseases.

* * *

Katie Clark recently retired from 32-years of teaching reading and writing at the middle school level, and has decided to write. After her diagnosis with fibromyalgia caused her to take an abrupt and permanent leave from a job she thought she’d have into her 80s, she decided to record her journey in her blog painFULLYliving.com.

This term painFULLYliving came from her pain-psychologist who helped Katie to understand that she can allow fibromyalgia to define her or accept that it’s only one part of her. She chooses each day with the help of her family and friends to live life fully. Through her writing, she reflects and grows and hopes to help others along their own journey. She is well-loved by her family and has always felt that her main purpose in this life is to be fully present for them.

How do you handle the hard stuff in your life?  Can you find the hope and push in every new start of the day?  How do you push past the pain and difficulties?

Thank you for visiting my blog today. 

 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Times They Are a-Changin'

A lotus flower begins growing at the bottom of a muddy, murky pool, and slowly emerges toward the surface, bursting out of the water into a beautiful blossom. During the night the lotus closes and sinks under the water, and emerges again with the sunlight of a new day. As the lotus flower emerges from the mud, and up toward the surface it is completely unstained.

Bob Dylan was right. The times are continually changing whether small or major.  Change is a part of life.  However, change, whether good or bad, brings a certain amount of stress, and that stress can bring on a flair for those of us with chronic conditions such as Fibromyalgia.

Since November of last year, it's felt like one pretty big change after another in my family: changes in health, changes in jobs, changes in homes.  My first reaction tends to be a pulling back, in my mind and body.  I stiffen, literally, as if to strengthen or to push back on the change. This can lead then to tension in my shoulders and chest which triggers in me a sense of anxiousness.

What I'm purposefully working on is leaning in.  Leaning into the change like a trust fall.  Breathing and being present in this moment, reminding myself that I'm safe, secure, and supported.  That my family, we are in this together, and we'll all be all right as long as we stick together.  This means that we share at a deep level, knowing that we can make it through anything.

This is bringing a new perspective to change.  Change that at first seems like a disaster, turns out to be just the kick in the butt that was needed to move to the next level in our lives. It ends up being a major blessing.  The prospect of change is now exciting and full of potential, making me open up my imagination for what I can create out of this next part of my life.

As the daughter of a mom with bipolar/schizophrenia, I heard again and again that just as things were going good, it would turn and storms would come. She would tell me that if things get really good, then prepare for them to get equal parts horrible.  At that tender age, I took that as a life lesson that has kept me on my toes, waiting for the anvil to fall at any moment.  However, now I realize that this was her reality, one which she really didn't understand.  She'd fly high for a time and then crash.  It was what she understood to be the way of life.  I'm just now realizing that I had this underlying belief coloring my entire life.

This last week, I went on a vacation that I was hesitant to take.  It was coming at a time of major change for my children, and I felt that I needed to be around to help them through.  I didn't think I could enjoy the time away.  Right up to the night before we left, I was tensing up, bracing for the worst.  I only went because my husband really felt we needed to go (and we'd already committed to the condo with my brother and sister-in-law).

After the November 2016 fire ripped through
Gatlinburg and Anakeesta Theme Park,
the community came together to rebuild
this favorite tourist attraction. 
When we visited the fall of 2019, we could still
see scars of the fire but they didn't compare
to the new beauty that was present.

The time away was so good.  We went to a place we'd never been to- Gatlinburg, TN. My brother-in-law chose our destination.  It's not a place that Kelley and I would normally visit.  But, I think, it was just what I needed to let go, getting a bit wild and silly.  My sister-in-law is one of the most caring, real, and hilarious people I know.  We did things that neither of us would have normally, but with the four of us, we did.  Tonya conquered her fear of heights by walking among the tops of the mountains over a glass, swaying bridge. I tried moonshine-nearly all 13! To conclude our week, she and I each got a symbolic tattoo.  It is Tonya's first.  She remembered her mom, gone 15 years now, with a Rose-of-Sharon and her mom's signature copied exactly from the note her mom had written to her 40 years ago.

I got a lotus on my inner left arm.  It's something I will see often reminding me that I am strong and have come out again and again to show my beauty. I'm reborn daily.  Daily I am changing.

This last week, I didn't take any pain medication.  I was able to get up in the morning and be alert and active all day (with a bit of a rest in the afternoon between activities). My symptoms from the Fibro are there but much more in the background. I'm feeling like I can be recreated, just like the lotus, each day is a brand new start. Times of change are times of celebration, growth, potential to recreate my self.  I'm choosing to lean in and enjoy!

4/10/20 Update: Due to COVID-19, Akaneesta Park is closed until the #stayhome #staysafe orders have lifted.  They working on even more additions and improvements this year. To say that our world is facing enormous change from this pandemic is an understatement.  But, I have faith, that we will come out the better and stronger.  Mother Earth has given us the kick in the butt we need to make substantial changes to how we treat both her and each other.

Are you open to change?  Do you balk at it? What have you learned from the changes in your life?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Going from PAINfully Living to PainFULLY Living

Due to spending the week in Arizona visiting my mother-in-law, I didn't get to write a new post.  I've decided to repost my first blog entry with a few updates this week.  I have two other posts in the works, so see you again next week Friday.

This is the beginning of
my journey with fibromyalgia. It's been
one of many ups and downs, turns and twists,
but ever moving forward, living
my life as FULLY as I can.

June (2018), as my husband and I drove across the country from Michigan to California in our Ford Escape, I began to notice a change in me.  It wasn't quite a new thing, but a new intensity and duration.  My muscles ached deep, deep within me, gnawing from the inside out.

This is the beginning of a major life change, a journey of sorts that has birthed a new self.  It's been hard (almost impossible at times) and is ongoing; however, I have come to be thankful for what it's brought me to.

Why I Have Chosen to Tell My Story Publically

Being a teacher and a lover of learning, I have done a lot of research.  Seeking insight, knowledge, and help from every place I could find it.  This blog is to share my path on this journey.  One:  Just so I can have it recorded somewhere.  Two: Hopefully help others through this sharing.

I have come to witness and understand that Fibromyalgia comes in many forms with a variety of symptoms and a variety of ways that people choose to handle it.  I have learned from others' stories; however, no one that I've encountered has taken the path I've been on.  I feel that by sharing what I've gone through and am going through might give insight to someone else.  I don't think anyone will have the same path as you, so gleaning from many, may lead you in the direction you will want to go.

I have chosen to accept the pain by managing it as much as possible. Sounds easy, right?  Just manage it. This blog will go into the details of how my life has been impacted, some of the possible reasons Fibromyalgia developed in me, and how I am managing it.  I have gone from PAINfully Living to painFULLY Living since my diagnosis in November (2018).

I will share as best as I can through my words the raw truths that I've been living with.  I don't want to sugar coat anything.  Fibromyalgia is an all-encompassing, chronic disorder: physical, emotional, and mental.  To share my path will mean sharing it all.   It will be cathartic for me and hopefully helpful to some.

As of today (2/21/20), it's been a bit over a year since my diagnosis.  I have learned so much about myself in this journey. I have learned a lot about how fibromyalgia affects me and what does and doesn't help me live FULLY despite its presence.  I continue on the path, open to what it brings me. Thank you for coming on this journey with me.

What journey are you on currently?  Do you find it helpful to reflect and share your story?  Do you find connection learning of others' paths and choices?  

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through as planned.

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Following My Heart...Tentatively

My husband, Kelley,  and my cousin 
enjoying the river, the lazy way.

I haven't written for the past five days (in this blog at least).  However, it's been on my mind.  Mostly because there are times that I am feeling defeated and times when I'm so very optimistic that it feels like I'm not telling a coherent story.

So, this 4th of July, Kelley (my husband) and I went to rustic camp at my cousin's forested land on the Chippewa River in Shepard, MI. We set up what we lovingly call our "luxury tent".  Actually, Kelley did most of the setup.  By the time we got to the river at 1:00pm, I was really tired out. The day before, I was whining about setting up our two-roomed, canvas tent.  "It takes too long and it's too heavy."  This is not my normal camping attitude, but I'm finding I want the light-weight easy setup tents.  I'm game for roughing it but want to make it as easy as possible.

It really is a great tent, just heavy!

After a couple of great days (however sweltering) hanging out with my cousins, I could tell I was beginning to feel the effects of not stretching like normal, eating and drinking celebration fare, as well as the stifling heat (subdued by swims in the river and dinner at restaurants).  After dinner at a wonderful Italian restaurant in Mt. Pleasant, MI, I knew I had to go lay down.  Our double high blow-up mattress was low on air, so I uncomfortably laid there for a couple of hours.  The pain began to throb, louder and louder in my shoulders, arms, and neck.  I began to feel nauseous.  I dragged myself up (Kelley and the others were a good two city blocks away, near the river) to sit in the running car with the airconditioning, hoping that this would help.  It didn't.  That's when I resorted to texting Kelley, asking him to come back to help me.

He got me my go-to pain med: two Bayer Back and Body and water.  I cried as he caressed my head and back, helping me to calm down.  I worked on breathing, slowly in for 4 counts and out 4 counts.  Kelley suggested that he drive me home and come back to get our things the next morning.  That sounded like good option, but I just didn't want to give in.  I want to go backpacking for Christ's sake!  If I went back, I felt that I would be giving up on that.  So, by calming down, the pain subsided a bit, and with the air mattress at back at full support, I went back to bed and slept all night.  The next day was cooler, and I was back to my normal level of manageable pain. 

Kelley got a $500 gift card to Amazon
 from Delta Airlines due to agreeing to
 changes in his recent work travel.
So, I  bought these items for 
an upcoming backpack trip-
to be named at a later time:)

So, Kel and I are planning a backpacking trip for next summer. However, we're probably going to do it locally and for one night, possibly two, to see how it goes.  I'm going to do what I love.  I just may have to be a little tentative. 

Do you have things that you love to do that are pushing your capabilities?  Do you have goals that you're striving for?  Are you able to find ways to do the things you love with modifications? I'd love to hear ways you're finding to live your life FULLY doing the things you love.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email