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

Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia

"Rabbit hole is a term used to refer to a bizarre, confusing,
or nonsensical situation or environment,
typically one from which it is difficult to extricate oneself." lexico.com

Those of us with Fibromyalgia (and those treating us or living with us) quickly come to understand that it is a bizarre, confusing, nonsensical journey.  I have pain where I am not hurt.  One day it'll hurt all on the left side of my body for no reason that I can identify and the next day it's completely on my right side.  I have energy one minute and feel like I'm wearing lead boots the next. I am so tired all day yet keep myself up and about until bedtime, and then at bedtime, I'm awake and clear-headed having no ability to fall asleep. 

We also learn that this bizarre journey is really one we must go on our own.  There is not a one size fits all treatment for Fibromyalgia Syndrom (FMS). Slowly and not at all straight forward, I am finding my way out of the confusing, dark tunnels and into the light of being able to manage my symptoms.

At the end of July 2019, I explained how I had gotten to the point of wanting to try medical marijuana to help me manage my FMS symptoms. I was just coming off of withdrawal from Cymbalta (one of the three FDA approved prescription drugs for treating FMS).  If you haven't read it, it would be good to read: Down the Rabbit Hole: Could Medical Marijuana Help? 

First Time

Each container of 10-10mg gummies
cost $16.

I have no affiliation or kickbacks for mentioning these products.  
I am writing about my experiences only.

Just after getting a Michigan Medical Marijuana Permit (under the category of chronic pain), I decided to go to a local dispensary. My research on Leafly.com was helpful; however, the dispensary didn't carry what I had thought would be the best to try as reviewed on their site. I knew I didn't want to smoke or vape.  So, I decided to go with Wana edibles (sour watermelon and sour blueberry).

I was nervous about going to this new world of a cannabis dispensary and didn't quite know what to expect.  However, my nerves were calmed by the professional environment and the friendly people who worked there.  I stressed that I didn't want to feel "high" nor did I want to sit stoned on the couch craving munchies (all stereotypical ideas I've gotten from movies, etc). They steered me towards the two above edibles, one for day time use and one to help me fall and stay asleep.  

That first day, I decided to heed all the warnings to try just a bit, so I cut the "gummy" into halves. The directions say: Start with a low dose of 5-10mg (cut in half for 5mg). Wait at least an hour to feel the effect before consuming more product. Around 2pm in the afternoon, I ate the sour watermelon hybrid of sativa and indica half piece. The hybrid is supposed to give a more balanced effect. I was hoping for less pain and clear-headed energy. One hour later and beyond, I felt little difference besides a bit of light-headedness.  

That night, I decided to take the sour blueberry which has indica strain (which helps with falling asleep).  Because of the lack of noticeable effects, I took 10mg (so a whole piece) around 9:30 pm (so 7 hours after the first 5mg).  From what I've researched, the effects of edibles stay in the system for 6-8 hours.  So, possibly, I didn't quite wait long enough for the other to be fully out of my system. Or, the indica THC just had more of an effect on me.

I did fall asleep in short order.  However, I woke up, around midnight (just about the time the THC would have been highest in my blood system), to a scary sensation.  I felt like I was going to forget to breathe.  It felt like I was just going to stop.  Also, time felt out of whack.  This disorienting feeling lasted for an hour or so and then I fell back to sleep. 

I hate feeling out of control.  So, I put the gummies away and haven't tried them again....yet.

Two Week Trial

At the beginning of February, I found the tincture I had also bought at that July hid in my nightstand drawer.  It was recommended by the person working at the dispensary as well as leafly.com: Mary's Remedy by Coltyn (CBD/THC 1:1 tincture) for pain relief and help with sleeping.

Mary’s 100mg CBD:100mg THC tincture creates the “entourage effect” and utilizes a unique terpene blend that has the potential to reduce inflammation and improve digestion. The Remedy 1:1 by Coltyn utilizes a graduated dropper for accurate dosing. Just 0.25mL constitutes a dose, and there are about 45 doses per bottle.

I took the .25mL sublingually (under the tongue) before bed for two weeks. I'll be honest, the taste seemed like castor oil meets olive oil, so I quickly learned to wash it down with water.

This resulted in a solid night of sleep each night (fell asleep fairly quickly and stayed asleep). Those of us with FMS and other chronic pain issues know that sleep can be one of the major things affected. As my physical therapist says, "Sleep is when the body heals." So, loss of sleep compounds issues.

I also noticed less pain during the morning times (amped up again in the afternoons) as well as generally clearer thinking.  I did notice that if I took an additional dose in the afternoon (say by 1pm), I ended up getting a bit groggy.  I didn't try that out on a consistent basis, which I plan to yet do.

Results from my Informal Experiment

After the two weeks, I decided to not take it and note what changes I had.  I ended up doing this for only three nights.  That's because I had three nights of little sleep.  I took it the fourth night and slept soundly again.

Positive:

• Sleeping soundly. (By taking .25ml of Mary's Remedy by Coltyn 1:1 at 9:30, I've been falling asleep about 10:30 and sleeping until 7:30. If I do wake up to pee, I have been able to roll back into bed and go to sleep.)
• My head seems to be clearer during the day.
• Less pain in the morning.
• My overall mood is lighter.

Negative:

• If I take it during the morning or afternoon, I tend to get groggy.  However, I didn't try this consistently yet to notice if it was those harder days I took the extra, so the fatigue, weakness, foggy brain were already there, or was it from the chemicals of the CBD/TCH reacting with my body's makeup?
• It costs $45 a bottle ($1.00 a dose).
• It's not readily available in my area.

I did run out of the Mary's Remedy by Coltyn, so I ended up getting a bottle of Mary's full spectrum CBD tincture (tastes a bit of cinnamon) and Mary's THC tincture (tastes lightly of lemon). Using the measuring droppers (the CBD tincture didn't have a measuring dropper so I traded it with the original bottle's dropper).  I ended up taking .25mL of each before bed and am finding the effects to be the same. I have not yet tried it during the day, nor in the past few days felt I needed to.

Mary’s concentrated tincture is an easy way to add CBD to your daily wellness routine. With organic full-spectrum hemp extract with naturally occurring cannabidiol and THC, nutrient-dense sweet almond oil, hormone-balancing myrrh and the warmth of cinnamon oil, this soothing blend helps provide physical and mental relief. The Remedy packs 250 servings into just a half-ounce bottle, and each drop contains a 2mg dose of CBD. (Nut allergy)

Free of synthetic additives, Mary’s highly concentrated 1000mg THC tincture is made with high-quality, full-spectrum THC extract and comes in a lemon-lime flavor. Sublingual delivery of THC is easy to use, discreet and convenient.
Only available in Michigan and California.

As I am not a doctor and at this point don't have a doctor's guidance on this (I've let all my doctors know I'm doing this but they haven't weighed in at all with any advice), this is a report for how using cannabis has effected my Fibromyalgia symptoms.

Here are a few of the resources that I've used to help in my choices:

• Safety and Efficacy of Medical Cannabis in Fibromyalgia

"Our data indicates that medical cannabis could be a promising therapeutic option for the treatment of fibromyalgia, especially for those who failed on standard pharmacological therapies." 

• Study Finds Cannabis May Be Suitable Treatment Option for Fibromyalgia

 "Medical cannabis appears to be a safe and effective alternative for the treatment of fibromyalgia symptoms. Standardization of treatment compounds and regimens are required." 

• How Much CBD Oil Should I Take?

"If you’re trying to treat a situation involving pain, like chronic back pain, chronic joint pain, or recovering from a chronic illness, you may need a good bit more CBD, and the thing to do is titrate your dose up. Start with a lower dose of 10 to 15 milligrams, and increase it from there."

• How Long Do Edibles Take to Kick In?

"When taking edibles for the first time, start with a small dose and work your way up to a dose that produces the desired effect."


What are your thoughts or experiences with using cannabis for managing Fibromyalgia symptoms?  I'm hoping now that cannabis has been legalized, that there will be more research about its uses as well as educated doctors for guidance. 

Thank you for visiting my blog today. 

I am committed 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

A Love Story: Stronger Together

Waking up this morning with pain, I cried. Pure frustration. My poor husband asks, "What do you want for me to do?" At first, I asked for a massage.  When he asked where,  I just whimpered, "Nevermind."  Reality is, he can't possibly help.  The pain seems to have no spot to massage. It's just everywhere.

So, I ask for my Yoga Tune Up Therapy ball, hot pad, and water, and meds.  That helped me to calm down.  Then, he drew me a hot bath with Epsom salts. And, as I soaked, he brought me some tea. 

This is love. 

 Our Love Story

Our first summer together 1983
in Chelsea, MI at Camp MUCC.

I met Kelley when I was 19. He was 22. I was the waterfront director at a fairly unusual summer camp for kids. Camp MUCC, Michigan United Conservation Club, which for those of you who might not know, is a hunting club. Being I had never even thought about hunting before, this was an odd place for me to land a job. But I was there for the water.  Kelley, on-the-other-hand, having studied Wildlife Management at MSU, was hired as a riflery and hunting instructor.


This was to be my home for the summer before going off to college. I had just left my foster family's home never to be a dependent again. I knew I was now on my own. Kelley was on his own, too.  Everything he owned was in two luggage boxes.  This was to be his home before he ventured out to find his "real" job.

The week of training, before campers arrived, we hit it off right away. And from there, on the weekends, once the campers had left after breakfast on Saturday, we often were the only ones left at camp.  Being we were poor as college-students, but we had food and shelter on a small lake in the quaint town of Chelsea, MI. Life was good. 

Kelley was from Manton, MI,
  so he brought me to meet his family before our week's journey.
 His older sister was shocked
when he showed up at her door with a girl!

At the end of the summer, before I headed to college and Kelley off to Arizona to try to get a ranger job at any national park, we went on a week-long canoe trip, just us two, down the beautiful Manistee River.  It was probably the most wonderful week of my life.  At the beginning of the trip, Kelley asked, "What if I asked you to marry me?"  I snorted, "I'm too young for marriage. I'd say no." Nothing more was said about that all week.  However, at the end of the week, as Kelley was taking me back home to Grand Rapids, his car broke down near the Cedar Springs exit.  

We stayed the night at the campground just off from 131, Kelley covered in grease as he worked on the car to get it going. I remember him looking up from the engine as I stood there talking to him and handing him tools as he requested.  And that was when he decided it was the perfect time to ask, "Will you marry me?"  I didn't hesitate, didn't even recall what I had said one week earlier, "Yes, I will."  


We were engaged, no ring or anything at that point.  We didn't tell anyone we were for at least half a year.  Kelley was leaving for AZ in the coming week, and I would be at UofM forging a new life.  Not sure we knew how things would work out, but I know for sure we both knew we were going to be together through it.

This was before the Internet and email was a thing in your average person's life. Kelley and I were poor.  I was living off my savings from the $1000 I had made over the summer, Pell Grants, and student loans.  Kel was living with his mom and step-dad (both very supportive of him finding a National Park job) and odd jobs he found in Phoenix. We could not afford long-distance calls and so we wrote. 

I've kept these in a binder from that time.
There are over 100 letters, notes, and cards.

Kelley was and is a guy who shows his love through what he does and generally doesn't say lovey-dovey stuff.  Surprisingly, when given a pen and paper and no way else for us to connect, and he poured everything out.  I, too, found that writing allowed me to fully express my thoughts and emotions, much more so than when we were goose-bumped, love-struck-dumb in the presence of each other. (Ah, new love!) And so the letters (long, long letters) flowed.  

After six-months apart, Kel not finding a park job and me really struggling at school, he decided to drive back to Michigan.  The red Pacer he was driving was glued and tied together for the most part.  But he was determined to get back to me.  He drove straight through on what would be the equivalent of several Monster caffeinated drinks (but his was black caffeinated capsules).  By the time he got to Ann Arbor, his eyes were buggy and bloodshot and his hair a greasy mess.  He called me at the dorm room letting me know that his car had conked-out on the highway.  

Being I didn't have a car, my good friend, Mindy drove me to get him.  She was ever so kind to let this wild-eyed, unsavory looking man into her car.  She had really only heard my stories, saw me writing him letters, and making him mixed-tapes of love songs, but she really had no idea who he was at this time. 

We laugh now (she and her husband have been good friends all these years later) at how she out of pure love and concern said, "Katie, are you sure you want to marry this guy?"  I was sure.  I loved that scruffy, red-bearded man, and I knew he loved me. 

Now, that's some car!

It was that February (Groundhog's day) that we bought my engagement ring and our wedding rings. That next summer, we did one more stint as camp counselors at Camp MUCC and then the next spring, 5/25/1985, we were married, surrounded by our family and friends. 

We've been married 34 years. Down days like the past few, make me appreciate the love we share.  We've had so many twists, turns, ups, and downs on this journey together.  We've grown so much from those homeless babies back when we first met.  The life that we've built together gives me strength, courage, and purpose.  

Being parents to two amazing children,
and then being blessed to bring in
our daughter-in-law and now our grand-daughter,
makes everything make sense, you know?

Kel this morning at his desk of our shared office.

We continue to journey together. This year finds us with more twists and turns.  Ever stronger together, we will find our way.

I almost didn't write a post this week.
The first two paragraphs were written on Monday.
I was too out-of-it and down to write after that.
Until today.  The direction of the post took
a totally different turn as I thought about
how much my guy means to me
and just how much he supports me and has
from the very beginning.

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 some times,
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.

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But....HOW do I Practice Acceptance (My Super Power in Development)

Image by John Hain from Pixbay

Today in yoga class, we had a good giggle.  Just as we were to stretch into our final rest pose, Shavasana, the drill of a maintenance worker started up loudly in the building next door that shared the long side wall of our classroom.  It juxtaposed against the calming, meditative music now taking a backseat to the jackhammer being amplified in the space.  Our teacher, after a few jokes, reminded us that as we began to breathe and set our minds to meditate, we had a great opportunity to accept what we cannot change and continue on. 

Image by windyschneider from Pixbay

I've spent this first week of January with the intention to purposefully practice acceptance of the things I cannot change. What I know is that this is not an innate part of my nature. Neither is it something that I can just decide and then I am.  However, as this little, somewhat silly opportunity to accept what came up, I found that I could do it without much effort due to the groundwork I've laid these past few months with brain plasticity and rewiring.

One surprising tool that has really helped me is the Calm App that I have on my phone.  I had gotten it to help me fall to sleep.  Several people I knew had recommended it for the music and stories which is what I tried first. These past two weeks, though, I began to do the beginner 30 days of meditation training with Jeff Warren.  At 4 days in (Inner Smoothness episode), I learned a new word-equanimity. Its definition is mental calmness, composure, and evenness of temper, especially in a difficult situation.  Learning to not balk or run away from uncomfortableness, but be able to literally (and figuratively) sit with it.

Meditation with Jeff Warren

The thing that has helped me the most was how he guides to "Notice your thinking.  Every time you catch yourself thinking or visualizing and can notice as if from a perch outside, you are strengthening your focus and equanimity muscle." And so, I've been doing this each day when I meditate in bed as my husband is sleeping next to me.  He snores.  So, it could be distracting, but I'm allowing it to be.  Or when Willow, our 15-pound long-hair cat decides to nestle in the area that really makes my leg feel uncomfortable, I allow it and maybe eventually move my leg so that he leaves.     

I am practicing to notice my thoughts (self-talk and/or images) that come up.  I notice if it's a judgment, a plan, a worry, a bracing, a sinking into the past.  I label it and let it go.  Jeff's explanation that the thoughts will happen and that the more we notice, label, and release these thoughts, the stronger we become in doing it.  And then, as we practice doing this during these times of meditation, we then find that we can do this when we go back into our day.

And so, I am beginning to find some positive changes.  First, I look forward to meditation time.  As I've stated before, I have ADD and have always been a doer, so being able to enjoy this is miraculous.  It used to be torture for me.  Second, and the most amazing, is that I'm beginning to do this when something uncomfortable or even painful hits.  

Last week, I had a bought of nausea, dizziness, and fatigue that started with a headache upon waking.  It stayed the whole day and into the evening.  That evening, though, was a special night.  We had tickets (from Christmas) to go see a Michigan State basketball game.  I got dressed to go, but I could just feel that the two-hour drive there, dinner, the game, and drive home, was going to be beyond what I could handle.  I was bummed.  

But, I did not sink into a deep sadness, which has been my norm when the fibro symptoms have caused me to cancel.  I was able to be okay with it.  And my quiet night alone ended up being fine. 

I know I have a long way to go with this, but I'm really seeing positive changes already.  I feel that I  am already becoming flexible and resilient.  I'm learning how to handle this life (even with the symptoms of fibromyalgia) with grace and ease.

Have you tried meditation?  If you're anything like me, this seemed a bit silly, maybe even a bit voodoo-ey. I'm finding now, that it's a concrete practice that's rewiring how I react.  I will continue to explore this topic of acceptance in upcoming posts.  I'd love your thoughts, questions, concerns, experiences to help me in my exploration. 

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 some times 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

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Acceptance is my Superpower- Living Fully with Fibro

Accepting that I will have pain, allows me to
experience it without angst, going forth as much
as possible to do the things that bring me joy.

I am a problem solver.  It has served me well in my 55 years of life. However, I have had to realize that I also am a self-appointed controller and fixer of all that I see.  This means my problem-solving mode is going 24/7, even in my sleep. This is not healthy.

While my take charge and fix things instinct has been helpful throughout my life and career as a teacher, it's now one that I really need to turn off.  Feeling like I need to fix things is a form of not accepting my life.  And that resistance to my present, always striving to fix and be better than things are, leads to anxiety, sadness, discontentment.  What I need this new year is contentment for the life that I have here and now.

Now, I don't mean I plan to sit on the couch and watch life go by with a smile on my face.  I just mean that I am going to accept the things that life brings me, just as they are. Accept the truth of my life and situation.  I will feel the pain (literally and figuratively), however, I don't have to rile against it. And by letting go of the struggle, I can be relieved of the suffering.

So, I feel the sadness or pain without trying to change it,
allowing it to be because this is what is,
and then I move forth.

Acceptance is Action

This past summer, I began Acceptance and Commitment Therapy with my pain psychologist at Mary Free Bed Rehabilitation.  It was hard to wrap my head around accepting the pain, brain fog, utter depletion of energy that fibromyalgia had brought into my life.  The fight against these restraints wore me down until I couldn't function any longer. Many of my friends have even commented on how pro-active I was being in dealing with this foe. However, the constant search and trying new ways of healing is frustrating, exhausting, and in the end, taking up too much of my precious life.

So, I will accept that I have fibromyalgia.  I will listen to what my body and mind need.  I will meditate, move and nourish my body, and focus on living purpose-FULLY (see my last post). With the tug-o-war rope dropped, I will breathe into my present whether there be pain or no.  I will accept and love myself instead of seeing her as incomplete and wanting.

Superhero-in-training

Acceptance is my super-power, but it needs developing through continuous choosing it and then practicing it.  Yesterday, I woke up pretty alert.  I felt rusted all over with noticeable pain in my left hip, but I was excited to write.  After writing most of this post, my husband suggested we go snowshoeing.  The snow was a fresh covering of glistening white fluff, and soft flakes continued to float as if the world was a snow globe recently shook.  Knowing we would be having our 4-year-old grand-daughter overnight for New Year's Eve, I was hesitant.  

However, getting out in nature and exercising are two of my five priorities for living purposefully, so I agreed.  While outside, trailblazing through the light snow breathing in the crisp, invigorating winter air, I felt a glimpse of myself before Fibromyalgia.  Last winter, I spent much of it in bed and missed going for these adventures.  Being we can go out our door into the woods, we did a 40 or so minute trek.  By the end, I could feel my hip getting angry.  So, when I got home, I used the hot pad and worked on breathing through it.  I also decided to take a nap before I had to turn on grandma-mode.  Accepting the pain allowed me to have fun I haven't done in a couple of years; accepting my limitations led me to rest and repair.

My Kryptonite

However, all was not hunky-dory last night.  I was up much of the night with pain in my arms (as if I had rock climbed all day) as well as both hips fighting to take turns as to which pain was more intense.  This is where my resolve gets weak.  I tend to get a bit panicky and frustrated to tears at times like this.  However, I'm proud of myself.  I belly breathed for 20 minutes, reminding myself of the fun we had through positive, mantra-type repeated phrases.  I used the heating pad, did some myofascial release with the yoga ball, and watched some laugh-out-loud comedian clips on YouTube (thank you, Michael McIntyre), finally falling asleep around 3am.  This morning, I woke up feeling unusually energized. I'm not saying it was from last night, but I really was surprised at how good I felt.  

And So I Commit

This next month of entries, I've decided to really focus on acceptance: how it affects the brain, how it affects mood, and how it ultimately affects a life.  I'll be using my own journey by practicing acceptance as well as recent research and others' stories to hopefully show how to do this and its impact. 

What does acceptance mean to you?  Does it seem like giving in?  Does it feel impossible?  

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 some times 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