Becoming Myself Again! My Experience with Low Dose Naltrexone-Part 2

Today is my 56th day on Low Dose Naltrexone (LDN).  I wrote about my initial experience after 13 or so days in.  I won't revisit that, but if you are at all interested in checking into this pain management treatment, I would suggest you read it.  I get into how to go about getting it, how to start it (and issues I had it), where to find support with good and specific information, and why there are not and will never be many research studies about it. (My Post: Tentatively Esctatic! My Experience With Low Dose Naltrexone Part 1) 

I now feel that I can safely say LDN is bringing me back to myself or the self I want to be. But, let me take a step back because it's not been a smooth journey and sure has had its major downturns. 

Early on, I received the advice that I needed to "Go low and slow". (See Facebook LDN group)  I didn't fully get it when it was first said. My doctor ordered the 4.5mg capsules, so I felt that getting to that level-the level that has been most researched for Fibromyalgia(FMS)-the soon was better.  I've since learned that there is no optimum level that works for every person. 

How LDN Works

LDN blocks the opioid receptors of the brain for a few hours.  When this has happened, the brain feels that there haven't been enough endorphins created in the body, so it produces more. Research has shown that those living with FMS have lower levels of endorphins in our system.  So, when the brain is "tricked" into releasing more endorphins by the LDN blocking off the receptors for 2-4 hours, it actually is creating natural pain relievers and mood booster. Also, the blocking of the receptors makes them more sensitive to the endorphins that have been created, making them more useable and plentiful. 

LDN Science explains how it works, "Since LDN blocks the OGF receptors only for a few hours before it is naturally excreted, what results is a rebound effect; in which both the production and utilization of OGF is greatly increased. Once the LDN has been metabolized, the elevated endorphins produced as a result of the rebound effect can now interact with the more-sensitive and more-plentiful receptors and assist in regulating cell growth and immunity."  The site goes on to explain that the Rebound Effect lasts for about a day.  However, being every person's metabolism is different, it can take different dosages with 3mg to 5mg working for most patients. 

When one has low endorphin production, they will experience:

• long-term pain throughout the body
• tender spots that hurt when they are touched
• muscle stiffness
• fatigue and low energy
• sleep problems
• depression

To combat this, doctors often push endorphin-building exercises such as yoga, swimming, and walking.  I  have felt this distinct change from a raise in my endorphins when I was in physical therapy.  When I showed up lethargic, hurting, and down, my PT would get me on the treadmill for 20 minutes at a rate that got my heart pumping.  Every single time, I found that I had way less pain, my mood was improved, and I had energy.  

And so, this is the effect that I am finding with LDN.  For a good 7 to 8 hours, at the current dose I'm at, I am experiencing a pain level of 2-3, I have the energy to go for walks, swim, do house projects, write, socialize, etc.  I also have clearer thinking and feel upbeat and motivated.

My Experience

However, I have had the complete opposite during these 8 weeks.  After writing my first post, I had a very difficult week.  I was moving up from .5mg by .25mg every 5-7 days.  I had started to take LDN in the morning, upon waking at 7:30am because I had gotten warnings at the medicine causing insomnia which is not something I wanted to experience. 

About two weeks ago, at 1.5mg or so, I had five days in a row where I was depressed (ready to give up using LDN), tired, and my pain levels (6-7) were higher than before LDN. I was so discouraged. I had read of the Rebound Effect that LDN created, but I really had no idea what it meant.  Fortunately, on the 5th day, I saw someone discuss this on the LDN Facebook group.  Her explanation about the blocking of endorphins made so much sense and now what others had said to me about taking it before bed became clear.  I was experiencing the blocked-receptor symptoms during my wake hours, thus causing elevated pain, depression, and exhaustion!

I went off from LDN for 36 hours, starting again with 1.5 at 9:00pm. Ever since that switch, I've been doing pretty well, and I'm actually sleeping okay without taking anything else. I'm waking up a couple of times, but I have been able to go back to sleep fairly readily.  I've been able to have my granddaughter over and play for much of the day.  Today, in a race with her from our community garden to home, I actually ran three or so blocks without feeling like a rusted Tin Man struggling to move.

Moving Forward

I'm continuing to titrate up at this point.  As they say, I need to find my "sweet spot".  I'm not fully sure what that will look like, so it may take some back and forth in dosages for a while.  Higher isn't necessarily better.  Due to metabolism, I need to find the dose that blocks while I'm sleeping and gives me the full rebound effect while I'm awake.  I don't believe I'm there yet.  If I take too high of a dose for my body, then I'll be in blocked mode for too long of a time, which will bring on the opposite effect for what I need. 

LDN Resources:

• A Letter to Your Doctor Explaining Your Interest in LDN
• ldnscience.org
• The LDN Book (Interview with Donna Gregory)
• LDN Research Trust
• Dr. Ginevra Liptan's Answers to Some FAQs on Low-Dose Naltrexone
• An LDN Patient's Interview-Carrie, Shingles and CRPS
• Conditions That Are Helped by LDN (There are many!)

I will continue to update you as to my progress.  I'm not "there" yet for sure and am not sure how long that will take.  Some have reported reaching their personal full results at 6 months or even a year.  They say to hang in for at least 8 weeks, which I have done and certainly am having wonderful results at this point. If you have questions or stories about LDN, I welcome them.  I am not a doctor, obviously,

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

What's a Full Life? Quest to Living FULLY Despite the Pain

Gazing into the night sky always brings
a sense of wonder and reflection for me,
What is it that I'm aiming for?
 What exactly do I mean by living FULLY?

There was a serenely clear, winter night sky this past Sunday in Michigan.  My husband and I dashed through the chilly air to soak our aching bodies in the hot tub looking over the lake. As we sat down, we tilted our heads to view the brilliant stars through the pine trees that looked like they'd been painted on the deepest of black canvases. (The free-to-use photo above, while beautiful, does not capture the large, bright stars from that sky.) We sat there in still, hot water so that the jets' noise did not disturb the serenity.  This is a FULL moment that lingers in my memory as I write this.

As a FULL life Draws to a Close

Last week, I spent in Arizona, with my husband and his mom.  I tease him because her first name is Katie (and so is mine).  His response to the "momma complex" insinuation is "Her name is MOM to me!"  

We flew from cold and snowy Michigan (19o F or -7o C) to sunny, blue skies of Sun City, Arizona where she has lived for half of her life. It was a Christmas present, us coming for a visit and taking her to a play.  However, it ended up coming at a particularly sad time.  Her baby sister passed away two weeks before, leaving Katie the last of her nine siblings. 

Talk of what now and the future of her finances, home, possessions came in and out of our thoughts and conversations all week. Talking about the past, her life with Ed and their children in Michigan, her life with Paul and his children in Arizona, memories of her sisters who all had moved to Arizona one after another, these all have made Katie's life FULL. So many stories, experiences, troubles, joys, and accomplishments in her nearly 83 years of life. 

While thinking about a life coming to a close is not comfortable, I have come to think that it must be talked about with those we love.  Reverie and reflection are gifts for all those who take part. These memories link us to one another, the past to the present to the future. The hurt and the happiness, the hopes and the fears, the weakness and the strengths are all things we share and can learn from.

Boxes FULL of Life

One thing Katie asked me to do is to help her go through the photos she had gathered, loose within several boxes stored in her cupboards. There were hundreds and hundreds of photos. Many very faded and most not labeled for who, where, or when. I'm doubting many had been seen beyond the one time after shuffling through the stack out of the developer's envelop.

I've always been the curator of family memories.  I inherited my mother's photos, then my grandmother's photos, then my father-in-law photos, and now I'm organizing my mother-in-law's photos so that her children each get these special moments in time. Going through photos makes me think of all these moments that so often we don't even recognize as important.  Especially in this day and age when we snap photos constantly, never to be printed or even viewed by anyone.

When I was an impressionable teen, I watched the iconic play Our Town by Thorton Wilder. If you've never seen it or read it, it's a must in my opinion.  In the scene after her death (spoiler), the main character Emily says, "Does anyone ever realize life while they live it...every, every minute?" With the response from the Stage Manager a very raw but real, "No. Saints and poets maybe...they do some." This hit me hard at the age of 14 and has played again and again in my thoughts as the past 42 years have scrolled past. 

So What is a FULL Life

What is it I'm aiming for in this life with fibromyalgia?  Just to have less pain? No pain? To have energy and clear thinking? To have accomplishments? Money? Fun? Tastes? Travels Experiences? 

I have come up with this and am putting it down here for me to remember: A FULL life, KATIE, is to REALIZE your life WHILE you're LIVING it. (As much as humanly possible.)  While I won't have a photo to capture Sunday night's perfect starry sky, or of the ache in my heart when my daughter tells me she's struggling, or the joy I have when my son pulls me under his wings for a hug, or the love I have when my husband reminds me to grab my coat as we leave the restaurant at which we just had a wonderful meal and conversation, or the warmth of my granddaughter's hand in mine, or my mother-in-law's eyes as she lovingly looked through her precious memories, I can stop at each of these times and see, touch, hear, smell, and feel, taking a moment to recognize this FULL moment-full of life whether happy, sad, good or bad.

Despite the Pain or really WITH the Pain

I am living a FULL life. Truly realizing and experiencing each and every moment as much as I am able.  The work I'm doing, through meditation, therapy, yoga, writing, etc. is helping me to be more aware and more reflective. Next week, I'm starting a special type of therapy to help those with complex trauma, EMDR.  I hope to bring my past difficult moments that gave me many qualities of strength into perspective, reframing them for what they are-a piece of this FULL life. Living FULLY with the pain and everything else in-between.

I wish for you a FULL life, too.  What does that mean to you?  I'd love to hear your thoughts.

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

Mind Over Matter: 21 Days of Meditation

Monkey Mind is a Buddhist term meaning "unsettled; restless; capricious; whimsical; fanciful; inconstant; confused; indecisive; uncontrollable".

Have you ever noticed your mind's thoughts as you're driving alone in your car?  Or as you're lying in bed trying to fall asleep? Really, any moment of the day, I can find my brain zipping from one random thought to another. Like a monkey swinging from thought branch to thought branch. My yoga teacher termed this as having a "monkey mind."

Thoughts that bounce from one random thing to another tends to be the norm in this day and age. I have found that while I actually thrived on that mentality for most of my life (feeling like I was more accomplished juggling all these thoughts into some sort of coherence day in and day out), I now am so overwhelmed with my foggy fibro mind that I find myself frozen in anxiety.

The more I study about how the mind works, the more I am coming to understand that I have been yanked around by my thoughts for a good portion of my life.  In the past few years, I found myself being physically pulled from one thing to another right along with my thoughts which lead me to a state of panic. In the journey to rewire my overactive nervous system, I have come to realize that meditation is the missing link. As a meditation teacher and researcher Dr. John Kabatt explains, “Most people don’t realize that the mind constantly chatters. And yet, that chatter winds up being the force that drives us much of the day in terms of what we do, what we react to, and how we feel.” 

21 Days of Meditation

I've been meditating every day for 30 minutes at least once a day for 21 days. As explained in my post Up the Air: Struggles with Flying, Fibro Flare, and Acceptance, I am going through the Mindfully Based Stress Reduction 8-week course online through https://palousemindfulness.com/.  David Potter shares this free course, based on Dr. John Kabat Zinn's program at UMass Medical School.

Dave Potter is a certified Mindfulness-Based Stress Reduction instructor 

and received his training through UMass Medical School where

 Jon Kabat-Zinn founded the Center for Mindfulness. 

The program's format makes this teacher's heart smile.  It's easy to understand and all the resources are accessible and meaningful.  While it's all on-line, everything other than video and audio files can be printed to keep in a binder (which is what Dave suggests doing).  I have made a digital binder that I will share here.  It's view only, but you could make a copy of what I"ve done.  I'm finishing week-3.  I decided to do week-2 twice because I had a flare during the first go-round and felt it would be beneficial to continue it for one more week.

You may click through the pages of 

the digital notebook that I've created.

 I am adding on as I go through the program.

Course Overview:

Week 1: Simple Awareness

I watched all the video links basically in one sitting; I was excited to get started. I printed out the formal practice and informal practice so that I could begin.  The first week David talks you through a guided body scan.  There are two versions one of 32 minutes and one of 20 minutes.  However, the research that showed good results was at least 30 minutes a day, so I did that one.  

At first, I did the body scan in my bed.  I was familiar with doing the scan because of previous experiences during yoga classes and other video-guided body scans. The main difference I found from this one was there was no mention of relaxing or releasing, just noticing how you were feeling.  It is suggested that you do this and all meditations when you are alert, so if you're really ready to drift off, this would not be the way to go about it.  

I did have a couple of sessions when I would blank out on whole sections of the body.  I would be "focusing" on my ankle and the next thing I notice I was to be focusing on my belly.  So, those times, I didn't count towards my half-hour.  I really enjoy the laying when I'm meditating.  I find I don't grip in my body as much.  Also, I used a blue-tooth eye mask or flax-seed eye pillow to help my eyelids relax. (Does anyone else have restless eyelids?) 

I purchased both on Amazon.  I like the sleep-mask for listening
to something without bothering someone else.
It's my new favorite thing for air travel. 

The flax seed eye pillow is perfect to rest my eyes,
but only stays on if I'm lying flat.

The biggest take away I got from this first week was that it's natural that our brain goes off every couple of seconds.  So, instead of thinking I'm weak and will never be able to do this, I was told to see each time I noticed that I was thinking about something else to see that as a brain sit-up.  Each noticing and bringing back the focus to my breathing, choosing to focus on my nasal passages as it comes in and out, is strengthening that brain pathway.  This was a HUGE revelation for me and really helped me to enjoy the noticing and coming back to focus.

I did the raisin meditation (which is the slowest way to eat a raisin) about half-way through the week. I found the mindful eating videos in the extra resources very interesting being I feel my eating habits are long ingrained in me through a life-time of school rushed lunches. I also began to realize that I can do anything mindfully.  I've been working on applying that, especially with my driving. (See my post Am I Strong Enough?)

Week 2: Attention and The Brain

This week (which I did twice) was an introduction to sitting meditation.  Which was difficult for me at first because it involved sitting up.  I first did it cross-legged (not a requirement at all) on a chair, but then decided to set up my area downstairs where I do yoga.  I have a bolster which I'm using to sit on (again, not a requirement).

I followed the same way of reviewing the videos and articles as in Week 1.  This time, some of the videos that David includes from YouTube lent me to explore other very interesting videos by meditation gurus such as  Shauna Shapiro (Ph.D., is a professor at Santa Clara University, a clinical psychologist) and Sara Lazer (Ph.D. Neuroscientist of yoga and meditation).

A few of the biggest takeaways from this for me so far, is that meditation actually changes the shape of your brain.  It shrinks the amygdala (the fight or flight part of our brain) thus decreasing stress.  Yes, thank you!

Also, I am becoming more comfortable in an upright position when meditating; I'm slowly learning to let go in my body.  I'm even having to actually work on not controlling my breathing. The one thing that is automatic in our functioning, I am trying to control.  After two weeks, the good news is that I am finding moments of pure letting go.

Week 3: Dealing with Thoughts

This week, I have started mindful Hatha Yoga.  This is actually what I practice at the yoga studio I attend Branch Out Yoga.  Joan, my teacher, emphasizes the breath and focus on it during each asana.  However, David requires that we do the two provided videos led by Lynn Rossy, Ph.D.  

Yoga is my jam, so I have been really happy to do this part. My teacher says, "Everything is yoga if done mindfully." So, the idea that we can move mindfully to create an integrated body and mind. One of the harder things I have to deal with is the JUDGE in my mind that comes out as I do yoga.  I strive often to do poses correctly or push my body to get to where it "should" be. 

I'm learning that striving and pushing is not the goal here.  I want to accept me where I am on this day at this moment.  The Judge and Critic are real but not my truth.  I can look at it for what it is, a thought bubble.  By noticing it and labeling it as "Thinking" or "Judging" and then coming back to the senses of the breath and movement, I find that I'm getting stronger at letting them go. 

And so, three weeks in, I'm hopeful.  I had a test today, and I didn't fully pass, but I think I did better than I would have before meditation.  After doing a wonderful sitting meditation, I went to write.  However, my husband was working on getting our tax information ready.  It's more complicated with our retiring and our creating an LLC.  I am the techie for the company.  I created (using YouTube tutorials) a spreadsheet that keeps track of our expenditures, earnings, mileage, and costs for the office space. 

So, when he wanted my help to get it ready, I began to get overwhelmed pretty quickly because he wanted the set up to be different than I had it.  I could feel myself getting roiled up and ready to be snippy with him. However, I worked on remembering the feeling I had just a bit before while meditating and then worked on breathing while I worked on the document preparation. I didn't snip and we got it done without us getting upset with each other.

Describing meditation is difficult.
I guess my best explanation is
 focusing on the senses of the body
in the present moment without getting
swept up in our own story.

Have you ever tried meditation?  I'd love to hear about your thoughts and experiences.  I will share my journey further down the line.  (Boy, I wish I had a brain scanner!)

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

What's Good Enough?-Acceptance to Eliminate Shame

My counselor gave me this question to think on 
after we discussed my recent two-week fibro flare.

So, I have a confession, it's one I'm making to myself and to you if you're reading this.  I am a fair-weather accepter.  I have been working on acceptance of my life with fibromyalgia.  To get there, I have been meditating every day and have gone back to counseling.


I accept that I need to be mindful of my body's needs.  I accept that my days-in and days-out look different from what they had been. I accept that if I'm going to do something, I need to plan ahead by getting rest or packing extra things to bring with me. I accept that I need to bow out sometimes.  I accept that I have to let go of doing everything I'd like in one day. I accept that I need to ask for help.  I accept that I spend much of my day developing my health.

However, after a couple of weeks in a fibro flare, feeling like the power to my brain and body has been cut off and the joint pain of elbows, hips, and knees turned on high, I really, really got discouraged.  Eight days in, I used the word depressed for the first time ever when telling my husband over the phone how I was doing.  

The next day, I went to my counseling appointment.  One thing that stuck with me, as far as acceptance is concerned, is that I've been accepting when things are going fairly well, and during this time, I was frustrated, angry, sad, and depressed due to not being in control at all.  I mean, I've been doing all the good things: yoga, meditation, belly breathing, gratitude, etc., so why this flare for this length of time?

I am coming to understand that I have great anxiety around not being in control.  As I've explained, my childhood was wildly unpredictable and fully out of my control.  Even then, I would play the "mother" to my mom and sister, trying to control the environment and make it all better.  Then, in my adult life, I worked in a field where my classroom was fully under my control. As teachers were taught to think that we could create an environment and expectations that would keep things predictable and moving in a good direction.  And at home, with my own family, I practiced the same mentality.

As I'm beginning to feel better the past couple of days, I began to think about what my counselor asked me to figure out. "What is good enough?" Meaning, these down days, I tend to beat myself up because of everything I want to be doing and be a part of that I'm not. So, instead of that, I would set up my own standard for what is good enough for me. Because it is me alone that is judging me. My norm has always to know what is good and then shoot for higher than that, so not reaching that highest level means complete failure. For the first time, I grasped that there is a good enough level and that it's okay for me if I chose to finally accept it.

Initially, I was thinking it meant I had to determine what was the minimum of things I did that would be acceptable on a down day? Thinking that if I had to lay around, I should have certain things that would make it more enjoyable and use that as my guide of "good enough". 

Down Day List of Special Things only for this time: 

• Comfy but stylish PJs or outfit, rather than the leggings and beat up sweatshirt I tend to wear because I then feel ugly on the outside and inside.
• Special books to read or listen to that make me feel like it's a vacation choice
• A yummy tea in a special cup so I can pretend I'm at a fancy bed and breakfast 
• A planned menu or special treats that will help me curb from eating the junk I tend to get into when I'm feeling down.
• Movies, TV shows, comedy shows, and podcasts I could watch or listen to. 

Quickly, though, I realized that while having these things ready would be helpful, I couldn't quantitate "good enough" by what I did. Literally, by Googling "what is good enough", I came to find a talk by Brene Brown whose book I saw sitting on my counselor's shelf but didn't know of her myself. I watched her famous YouTube Ted Talk on Vulnerability, her interview with Russel Brand, her talk about shame, and then her show The Call to Courage on Netflix, all in the same evening. 

Photo by geralt
Shame for not being healthy fuels my struggle with acceptance.

Something she explained about shame really resonated with me. "I define shame as the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging – something we’ve experienced, done, or failed to do makes us unworthy of connection." I realize that I am ashamed of myself when I'm not healthy. I feel like I'm not doing all that I should to be well. I'm not good enough to figure this out.

I'm currently reading a book, GET BACK INTO WHACK by Sue Ingebretson, who describes her journey with fibromyalgia. She talks about how she came to manage the symptoms and healing. For me, this is what I expect of myself.  I have been diligent in being proactive. And so, I now understand that I feel shame for this flare because it means I didn't do enough or did something wrong. I feel shame for letting my people down.

And so, I realize that I have not accepted that I am vulnerable. I've been determined to outsmart this syndrome. And so, I'm understanding that I am vulnerable, but in the words of Brene Brown, “Vulnerability is not winning or losing; it's having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it's our greatest measure of courage.”  And by choosing how I respond to these times with self-acceptance and self-love, I do have control over these down days.

My Down Day "Good Enough" barometer:

• Did I do what I was able to do? 

• Did I listen to myself and my needs?  

• Did I appreciate this day that I was given?

• Was I present in my day?  

• Did I relish in what I was able to do? 

• Do I notice what I did (and not what I didn't) do? 

I understand that if I can use this through acceptance, I then release the shame (and all the bad feelings that go along with this) that just heighten the flare into something unbearable.

I'm not giving in.  Just allowing myself to have honor in these down moments. I am enough. I am grateful right now because I am alive.

How do you handle down days?  Do you beat yourself up?  Can you relax into it with acceptance?  Do you have any special protocols you do that help you feel more positive during down days?

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.

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