Striving each day to live FULLY despite the pain of Fibromyalgia.

Friday, December 27, 2019

New Year Resolution: Planning to Live PurposeFULLY




I have always felt that I handled change pretty well.  During my teaching career, I often would be the person who would dive into changes (as long as I believed in them) and help others make the jump.  This year, after getting to the point where I feel I can make plans and follow through with goals, etc., I'm now also dealing with the transition from work-life to my retirement-life.   I'm far from being bored.  As I've said, I feel like a kid in a candy store.  I really want to try almost everything (not skydiving, though).

I'm excited, but also overwhelmed.  Partly, my ADD leads me to scamper from one project to the next.  That was a good skill in past years; as a teacher and mom, I could multi-task with the best.


However, now this scatteredness is causing me stress. For example,  I'll start dishes but then realize that (as the water-fills up the sink) I can go throw in a load of laundry.  From there, I see the cat food needs filling. Realizing the water in the sink might overflow momentarily, I head back to the kitchen, still holding the bag of cat food which I sit on the counter so I see it when I go back into the laundry room.  With the water just turned off in nick of time, I wash a cup which makes me realize that I haven't drunk any water yet this morning, so I get the teapot to fill with water...

Time Slips Away

This type of scatteredness ends up with me fatigued and a bit frazzled on my bed, the untouched tea still on the counter in the kitchen, a few clean dishes drying as the hot wash water is cooling still half-full of dishes, washing machine beeping it's done, and the cat who has now knocked his food bag onto the floor, eating the bits that have spilled out. Eventually, I get all the started things done, generally that same day, but time seems to slip away without me truly focusing on what I want to be doing in this new place in my life.


On this online program that I purchased yearly for $12, 
I could duplicate items,
 add in links to documents, videos, etc, 
put in specific notes that would remind me of what I needed, 
and I could share it with others.

As a teacher, my time was very scheduled and orderly.  Each day I knew, for the most part, what I would be able to accomplish.  I would make my list on sticky notes or in my on-line lesson planner to keep me focused during my "free times". If I didn't get something done, I'd move it to the next day without too much of a struggle. Albeit, the stress to always do and get things done did end in my leaving teaching due to developing Fibromyalgia, so I'm not suggesting this is a good way to live.


Focusing on the PurposeFULL

What I am needing is a direction.  Each day can be eaten up by things that call at the moment but don't add up to anything meaningful.

This past year, I focused on my health, working towards lessening the symptoms of fibromyalgia which had brought me to halt.  While I still need to do this daily, this coming year, I want to grow, learn, contribute in a purposeful way.  For me, I know that to do this, I have to be purposeful in my moment to moment choices.

Last week, after feeling overwhelmed with what I want to do vs what I have to do vs what I think others expect of me, I decided to put it all down.  I ended up first prioritizing my areas of focus.

I color-coded my five priorities:
Get/Be Well
Nurture Family
Connect w/Friends
Pursuing Passions
Making Money

I searched for an online program like the one I used for my lesson-planning; however, most that I found focused on business and productivity.  I did find one program (weekplan.net) that suited the individual that had a good structure for developing purposeful, daily scheduling.  They focused on the roles you play in your life: friend, spouse, parent, etc.  I think I could make my 5 Goals fit that.  Unfortunately, the cost was $156 per year-way to steep for me.

This is the first time I've won something since 1976 (6th grade)!  
Thank you Zebrapit.com!

Last month, I won a Warrior Life Planner created by Mckenna Harwell, a 28-year-old spoonie, dealing with chronic endometriosis. I have the complete version of the 2020 planner. This has a wealth of ways to keep yourself on track while dealing with a chronic illness: medication lists w/check-off, doctor info with visit dates and note space, insurance info, and year goals, just to name a few. For a review of last year's model, read Michelle Curtis's interview with Harwell at this link: Mckenna Harwell & the Warrior Life Planner, January's ZP Hero.  The version I have is a paper/pencil journal, and because of this, I know I won't really use it.  I've decided to give it to a woman, who hates using technology and is dealing with chronic illness and all it has to encompass, and I know she will put it to good use.  On the Warrior Life Planner Website does have an ultra-lite version you can get as a digital download to create your own planner binder.

So that brings me back to what I currently use for organizing: Google Calendar for events and reminders, Google Keep for lists such as my current meds, doctors' info,  camping supplies, and blog post ideas, and a paper monthly calendar I share with my husband.  These things help me stay on top of things fairly well and are at my fingertips pretty much where ever I am;  however, they have only been for putting down actual appointments I've made, not focused on what I'm actually spending my time on and surely not helping me focus on my priorities.

I've come up with a plan for Google Calendar:

Because this is a holiday week, I have a lot of Nurture Family time allotted
 and not much Money Making!
  • When I make an event, I am color-coding for how it fits into my 5 goals.
  • I can repeat an event very easily.  
  • I can delete or change the date or time for any event without a problem. This is important that I can be flexible when I never know when a day or more is going to be a wash due to a fibro flare.
  • In the event creation screen, I can add details, documents, or links to help me remember information. This is especially helpful for doctor's appointments.  If I don't write it down, I often forget to bring up a question or concern.
Note that I have a question for my next check-up 
to ask about ruling out Sjogren's Syndrome. 
I had never heard of it before until it was mentioned in 
Facebook Group FIBRO CONNECT.  I have many of the symptoms. 
I've added a link that was shared that talks about what it is 
so that I can share it with my doctor.
  • I can add the address for the place of the event which allows me to click it to bring up Google Maps.  I tend to get lost easily (not a symptom of fibro; I've always been directionally challenged).
  • I can invite family/friends to an event that helps them to remember we have it scheduled or to know if I will need help.
  • I can add as many reminders as  I want.  I generally have one email of one day ahead and then a message one hour before. I can't tell you how much this has saved me since I've been using it.
  • I am now adding in not just officially scheduled events like doctors' appointments or hair cuts, but putting in my own daily things like yoga, family, writing, etc times.
I'm feeling pretty good about this new system.  If I had programming knowledge, I do think it would be great to create a wellness warrior's online life planner, but this new way of scheduling in Google Calendar (with the addition of lists in Google Keep) looks to be promising. It's really ridiculous how I love organizing.  I think it makes me feel like I'm actually in control.  Ha! Ha!

PS-I've also fixed up my GoogleKeep notes, color-coding for the 5 Goals and putting the goal label on them so that I can search say "health" and on the screen comes up all my notes for doctors, medications, history, etc. for ease of reviewing, sharing, and updating. (Oh, and I can add reminders to the notes if needed or put a link to the note in my Google Calendar.)



What do you do to help you live your life purposefully?  I'd love to learn from you.  What are your strategies?


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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Friday, December 20, 2019

There is No Small Stuff: How Fibromyalgia Has Affected my Tolerance for Stress

Yep, for me, it's as if there is no small stuff.
 Everything looms large over me-all the time.


As many of you probably see out here in cyber-net articles, there is a big focus on how to eliminate stress over the holiday season.  In this article featured in Psychology Today: 7 Tips to Relieve Holiday Stress, the writer provides some very concrete and helpful steps to take.  Holidays tend to bring many to-dos on top of the normal list of daily commitments, so talking about calming stress or eliminating stress makes sense.  Many of the suggestions I've read or heard are healthy and helpful.

However, what if the stress that one is feeling is really unrealistic?  Really out-of-proportion to the reality. That is what I seem to be experiencing.  The prior couple of years leading up to my Fibromyalgia diagnosis, my intolerance to nearly any demand (given from others or self-inflicted) had turned up to a high-intensity level. It's as if the same amped-up nervous system is also controlling my stress-o-meter and both have been turned up to 9.

"Fibromyalgia is a disorder of pain processing. Evidence suggests that both the ascending and descending pain pathways operate abnormally, resulting in central amplification of pain signals, analogous to the “volume control setting” being turned up too high."  Dr. Daniel J. Clauw, UofM

Most who knew me before the onset of Fibromyalgia would probably say that I'm pretty calm.  I've even been told by the school psychologist in a meeting that my voice was so calm and soothing, she could listen to it for hours.  I've also been one to be level-headed in a crisis and really someone that didn't let too many things get me riled up.  I saw my "to-do" lists as fun (usually) and would enjoy ticking things off as the day or week went by.  I never really stressed whether I could get it done. 

I barely planned ahead. I prided myself on being able to live off the cuff.  I just did as I did and things got accomplished.  As I look back on my life before Fibro, it was as if I had a magic power of which I was totally unaware. Meals would just fall together; events that I planned always seemed to work out. 

Also, I have never been a big worrier. I wouldn't ruminate on if this would be just so or what others would think.  I accepted that I wasn't a perfectionist (to say the least) and that if my classroom bulletin board was a bit cock-eyed, oh well, it got the message across and had charm.  

So when this sense of feeling overwhelmed with minor plans of the day: laundry, yoga, get gas, email a friend, make dinner, fit in a substitute job, comes around, I'm at a loss as to why.  Only my closest humans who are with me all the time really see the change.  The other day, I began to whimper in frustration when talking about feeling overwhelmed by doing the few things I had planned for the day.  My husband, thank God he's so understanding, just listened, not really seeing where my anxiety was coming from.  To be honest, neither did I.

While I 100% believe this, right now my nervous system
 is reacting before I consciously make the choice.

I do know that it's the struggle against the things in life that cause stress.  Like tug-of-war, if I chose to drop the rope end, the tension is gone.  The problem that I'm having, is that just getting a shower can cause me to feel stressed. My chest gets an aching feeling, my jaw tenses, even my heart rate elevates.  It seems unbelievable that in my retirement, I'm feeling like I don't have enough time in the day!  Seriously!  When I worked 10 hours a day, I felt more capable of handling my life.

So, what are my demands that are causing me to feel overwhelmed?  I'm realizing most are self-imposed. 

My Wants:
In this time of transition, I feel like a kid in a candy store.  There are so many things I want to learn, try, accomplish, participate in.  Finding time to write. Get outside for hikes, bikes, snowshoeing, etc. Learn to play Ukelele. Help in my community.  Earn some $. Learn to cook tasty, healthy meals.  Make my own yard art.  Connect with friends.

My Needs: We all have these things that we just need to do. Shower, get dressed, drink water.  While those a very small, there are a gazillion of them that I had never really noticed.  Often I mentally give myself a pep talk.  "You can get out of bed.  All you need to do is pee and brush your teeth."  Then, getting that done, my body wants to lie down, but say, "You can get that towel and step into the shower but after you can just put on a robe, you don't have to dress."  However, I get out of the shower, go to get the robe out of the closet and realize that actually putting on close wouldn't be too far of a stretch and so I do.  Walking by the bed, I encourage myself "Go ahead, pull up the blankets and make the bed." This was my actual inner monologue this morning.  

My Wellness Routine: Fitting in the wellness pieces of my life is taking quite a few hours a day.  Yoga, if I go to the studio, is a two-hour commitment at the minimum. Then, fit in daily meditation, gratitude journal, going through the Pathways ap that has sessions for me to work through in an attempt to quell the pain by rewiring my brain. Also, I have found a wonderful chiropractor and a magical masseuse who really help my body move more freely and with less pain.  Going there is a three-hour commitment which was every week for the past two months but now every other week.  I've also just started CBT counseling, which will be an hour every other week.

My Obligations: I emphasize, these obligations are what I place on myself on behalf of the others in my life.  I'm finding that I have lived in the caregiver role even as a child with my single-parent mom who struggled to get off the couch many days, as a parent myself, as a teacher... It's hard to turn that off.   I've prided myself in reading and often meeting others' needs before even they knew they had them. This is a good thing, really.  However, I've taken it to the level I have no business being.  For example, when I was at a local elementary school to substitute teach in PE, I saw a woman lugging boxes to the balcony part of the gym.  I didn't have students for another 30 minutes so I asked if I could help her.  (This, I feel is a good part of my natural tendency.) After finding out that she was a classroom teacher on her planning time, getting set up for the Secret Santa Shop because there weren't any volunteers from the school's PTC, a nagging voice from within calls me to volunteer at that school to help out. This feeling is a pressure that wells up inside.  It's not coming from a place of want but a place of should. It's things like this that come up for me all the time.  I see a need and feel I'm the one who has to fill it. 


And so there are times, like the other morning, when I know I can't go forth.  The stress is too overwhelming.  Instead, I laid down and did a tapping (EFT) meditation on feeling overwhelmed.  I acknowledge that my brain and body are saying they are on overload. (Even, when from the outside, it looks like this shouldn't be the case.)  I accept that is the way it is at this moment. 

Lying down, knees bolstered and eyes covered with a pillow, I belly breathe to the count of four and out to the count of six, working to calm my system from the fight/flight to the rest/digest. I give myself grace, sometimes even talking to my brain letting it know that I appreciate how it's worked so hard all these years to protect me, letting it know that I'm safe and secure.  

And then I get up, feeling like I can move forward again. The ache in my chest and the tension in my neck both gone.  Like neuroplasticity as it relates to the hyper-vigilance of pain my Fibromyalgia brings, I feel like I'm now needing to treat my amped-up anxiety similarly.  If you'd like to know more about what I'm doing to create new brain pathways to calm both my pain and anxiety, please read this previous blog: Just Breath and Other Ways to Ways to Rewire the Pain-filled Brain.


Have you also noticed an amped-up intolerance to stress?  What form does it take for you?  What do you do to calm it? 

Thank you for visiting my blog today.  Click the subscribe button above if you'd like my post to be delivered to your email every Friday.

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.

Thursday, December 12, 2019

Writing with Fibromyalgia—Choose to Make Every Day a New Start

Wow, what an honor to have my story featured on writingandwellness.com Each day is a new start.  I'm thankful for my journey.  I've learned and grown so much.

Click the link below to read the full article.
Writing with Fibromyalgia—Choose to Make Every Day a New Start

Monday, December 2, 2019

Fibro Festivities: Keeping Family Traditions

My husband and granddaughter putting on the first decorations.
I have always been devoted to family and all things that make us a unit.  As a kid, I ate up my grandmother's stories of her childhood.  I relished in her tradition of baking Christmas cookies (20 or so varieties), giving each of her six children's families a box full.  I cherished, even then, the gathering of all my aunts and uncles and 30 cousins at my grandparents' home to enjoy a wonderful meal full of loud banter, the grown-ups at the "big" table and we kids next to them,  at the long row of lined up card tables. We would wait patiently for the adults to finish eating, my Uncle Dave and Uncle Fred purposefully torturing us by getting a FOURTH plate full of food. I can still play the 4-D movie of all us kids sitting on the floor as one present was passed out at a time for us to anticipate opening.
These were very special moments when the worries of the daily grind vanished into laughter, peppermint, and wonder. 

I hold the memories my grandmother stitching each of us a handmade Christmas stocking and organizing us cousins to sit around her dining room table making tree ornaments (both of which we still put up each year). This to me, is the most important part of the holidays.
I made a digital version of my grandmother's Christmas cookie recipes.
Click this link to view them: Grandma Sherwood's Christmas Cookies

I find that family traditions, passed down from one generation to the next to be the tie that binds.  However, as I lie on my bed writing this, a headache trying to bloom and my body worn out from the bit I did this morning (yoga and snowplowing), it's easy to let things go because they seem extra or too much.  But, the part of me who is determined to live FULLY despite the ever-growing list of symptoms of Fibromyalgia can't give up on these cherished moments.
Grandma Sherwood's handmade stockings circa 1990.

My store-bought stockings with glitter paint pen names added circa 2015.

However, they really aren't extra.  They are essential.  They are our core-connection to the past and to the future. And so, I (along with my helpful family) make sure that the decorations go up, that some cookies are made, that the music is playing as we put up the tree, our Christmas letter (anyone still do this) goes out, and that favorite foods that only come out at this time are made.

Grandma Sherwood's made ornament circa 1975.

Our granddaughter's made ornaments this Thanksgiving.

This time last year, I was at my worst.  My family picked up the slack and made sure we did at least a smidge of everything.  They put up the decorations one day and surprised me.  I had just come home from was what was to be my last week of work and the living room was decorated. (I had planned on just having the tree.) We made cookies, albeit they were ready-made dough versions that we added a bit of holiday icing or festive sprinkles.

And so, I gently approach this Christmas. The day after Thanksgiving (which my daughter hosted at her house-a new tradition), we got our tree put up with the lights.  We waited until Saturday to put up the decorations (they came over for pizza and helped us).   My husband wrote the family letter (I have to admit, he does a great job). I will print them and get them into the cards to mail hopefully this week. As for gifts, while I actually love shopping the local vendors, I'm giving myself a break and purchasing online to be delivered to our house and giving money.  This next weekend, we will make a few varieties of cookies, just the family favorites.  I will enlist the help of my daughter and granddaughter.

The danger for me is overdoing it and then not enjoying the actual time with my family.  And so, this Christmas (my first feeling more like myself than last year), I will continue with traditions but on a lighter scale.  The heart of the traditions I experienced as a child will be there, giving my present family precious memories to guard and pass along.
This weekend we made a gingerbread house using a storebought kit. 
All the fun, less of the work.

So, for now, as my head decides to continue down the path of pounding, I will take a rest. Listening to my body, following my needed protocols for wellness, and asking for help are how I will keep the traditions alive and be able to enjoy them this Christmas.

What is important at this time of year that you just aren't willing to forgo?  What have you had to "lighten" or limit?  What are your strategies to enjoy the holidays?

From my family to yours, 
May you enjoy this season, cherishing the moments that make it special with those you love.