|In this Twilight-zone-world we’re living in,
getting a stylish face mask is a thing.
When I actually think about what’s happening in the world, I get a disoriented feeling, like we’re stuck in an episode of The Twilight Zone.
As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.
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, at 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 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. On 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.”
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.
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 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 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 takes 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 in 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 Bluetooth eye mask or flax-seed eye pillow to help my eyelids relax. (Does anyone else have restless eyelids?)
The biggest takeaway I have 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 absolute 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 lifetime 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?)
This week (which I did twice) was an introduction to sitting meditation, which was difficult for me at first because it involved setting 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 led 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 understanding from this week 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. Actually though, I’m having to work on not controlling my breathing whenever I’m asked to focus on it. 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.
This week, I have started mindful Hatha Yoga. This is actually what I practice at the yoga studio where I practice. 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 doing this part. My teacher says, “Everything is yoga if done mindfully.” So, 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 the 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 riled 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.
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 by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.
I’m a lover and a learner, not a fighter. After doing some reflection on a poll asked to those dealing with fibromyalgia for what name we would choose to call those with the diagnosis, I realized that I bristle to the appellation of Fibro Warriors, Fibro Fighters, and the like. The war metaphors just don’t sit well with me.
While I understand that viewing oneself as a warrior is empowering (and if it resonates with you then use it), but for me, I feel in control and strong and courageous by learning about how my mind and bodywork. Due to this outlook, I have found avenues that are working for me so that I feel like I’m able to live my life fully.
Some will say that these labels are just words. But as I am doing a lot more reflection through meditation, counseling, and writing, I have come to realize that the words I say out loud and in my head end up defining me.
The fibromyalgia that is within me is not my enemy. I have come to believe that my nervous system has been on overdrive all of my life, right from in the womb due to my own mom coping with schizophrenia and bipolar (unknown to her until I was 16 or so). Her unstable mental health was the vibrant and awful hearth that lit my understanding of the world.
After my six weeks of intensive therapy through Mary Free Bed’s Pain Program (my blog explaining this), I came to understand and believe that the pain that endlessly roves around my body, the brain fog that weighs heavy in my head, the extreme exhaustion that forces me to lay down comes from a friend of sorts-my nervous system. My nervous system kept me on alert as a child. It was protecting me from the random emotional and physical attacks my mom would have without any warning. As I’ve explained in past posts, I learned to live on that adrenalin right up until I couldn’t function any longer last year. I actually thrived in some respects.
|Certainly, the way is not clearly marked.|
I will admit, there are times where I feel like I’m going through more of an odyssey-full of hardships and trials. Sometimes moving forward in a positive way. Other times stymied by a flare that brings my progress to a standstill or even pushing me back to take shelter. Often, it’s felt like more of a quest -constantly searching to learn and to accomplish my goal of living as fully as possible.
|Humorous image here, but when I’m down and out,
it’s not funny in the least.
The other day, when talking to my daughter, she reminded me after a time of doubt and discouragement, that this journey isn’t going to always go on the route I’ve chosen. Unexpected exhaustion hits in the middle of me having a great time. The fog rolls in, and I can’t see or think clearly. Pain has led me into a dark alley and left me whimpering and doubting that I can continue. This too is all a part of my unchartered journey.
For each of us facing a chronic illness of any type, taking time to really think about the metaphors we use is important. Also, that what we use needs to connect to who we are and want to be. In the medical research article, “Metaphors We Think With: The Role of Metaphor in Reasoning” published in Public Library of Science Journal,researchersPaul H. ThibodeauandLera Boroditsky state that through the five experiments they performed, analyzing the role of metaphor and mindset, they found, “…that metaphors can have a powerful influence over how people attempt to solve complex problems and how they gather more information to make “well-informed” decisions.”
In addition, they discovered that “…the influence of the metaphorical framing is covert: people do not recognize metaphors as an influential aspect in their decisions.” And so, it is essential that we think about the words we use to describe our illness and our relationship to it. Those words impact not only how we view our situation but also influence how we chose to react to it.
In the article “From Battles to Journeys: Changing How We Talk About Illness and Cancer” byVanessa Milne, Jeremy Petch & Maureen Taylor, the list a few different ways we can think a disease. In the article, they talk about a woman who referred to cancer in her body as cells that were out of tune with the rest of her body’s cells. This got me thinking.
Needing to be Tuned-This week, I started taking ukulele lessons. Awkwardly, I tried to get my fingers not only pushing the string down fully but on the correct fret and not lazily touching the other strings. I have not yet gotten this to happen, so when I strummed the four strings in tandem with my teacher’s notes, mine sounded sour and totally out of tune. It seems like that’s much like my body and mind, currently. It’s awkwardly trying to strum a tune, but it’s really out of tune.To my surprise, I’ve been relishing my time in meditation more and more. I feel like it’s bringing my mind and body back in harmony with one another.
In the article, they explain that often the metaphors come from a personal connection. Which makes sense, metaphors compare two unlike things-usually something one is really familiar with to something that is difficult to explain. So, your own life experiences could bring you a meaningful metaphor that helps you to explain and cope with illness.
Here is a list from their article (linked here):
Further Food for Thought:
This week, my husband and I splurged on a ticket for me to join him in Pasco, Washington. Kelley does contract work that causes him to travel about one week each month. Being I had never been to the state of Washington and he was going to be gone from Monday to Saturday, we decided that I would come along.
I blame myself (and my brain fog) for how the trip has gone. After a pretty active and clear-headed week, I found myself very tired and foggy last Saturday. Being we’ve always packed a day or night ahead of any trip, I didn’t even consider planning ahead. BIG MISTAKE! I really haven’t been on any long travel trips since before my diagnosis. The last big trip (driving from Michigan to California and back) was two years ago and the beginning of the unusual, constant, deep pain roving all over my body.
And so, Sunday, while not horrible, found me not at all motivated or clear-headed when I packed just before bedtime. My belligerent body, seemingly because it knew we’d have to get up at 4 am, decided then that I didn’t need to sleep at all. And so, I was awake and ready to go by 4:30; however, my zombified brain didn’t consider that I didn’t have my purse with me until we were nearly at the airport, one hour away from home. Of course, no identification meant no boarding.
Being we didn’t have flight insurance (something we may have to bite the bullet and pay the extra fee next time), we didn’t expect that I would be able to go. However, Delta, being overbooked for that morning’s flight was asking for volunteers to take the later flight. My husband was able to get them to add me to that ticket at no extra charge to us. So, off he went, with me driving home to better prepare for my travel.
It was a bit of a knuckled drive home due to icy conditions on the roads, and I was struggling to keep awake. I felt like I was in some out-of-body state. However, I made it home safely and was really looking forward to cuddling back into bed for a few hours of sleep. Determined to get my purse into my backpack so that I had everything ready for later, I looked for it hanging on the hooks in the mudroom. Not there… So, did I leave it in my car (a bad habit I’ve gotten into lately)? Nope. Where could it be? Then, it dawned on me. I rode in the backseat of my husband’s car(the one we took to the airport that morning)with my granddaughter three days ago when we took her to a water park for the day. I walked meekly to the garage where I had just parked it and looked into the backseat; sure enough, there it was.
Even so, I really didn’t let it get to me. I was actually thankful for the extra time to myself to get some sleep, do some yoga, and just rest, knowing that I’d be stronger for the flight the next morning.
I felt ready. Starbucks’ non-dairy splurge coffee made me feel like a pro. It wasn’t until my short flight to Detroit that I really looked at my tickets. I was arriving at A5 four-minutes before boarding started for my flight to Salt Lake which was leaving from gate A-65. Hmm… I realized that I was going to have to sprint. I made it and had time to pee before getting on because I was in one of the last seats on the plane (beggars can’t choose better seats). As I carefully walked down the narrow aisle, guarding my backpack so as not to hit anyone, I saw my seat, middle-stuffing between two bigger guys. Luckily, I don’t mind smaller spaces, or so I thought.
Boy, I now realize that being confined without ways to stretch really isn’t good for my tightly-wound body. It was a long four and a half hours. I had chosen not to travel by myself while on Bonine for my motion-sickness and forgot my ginger chews, so as the flight progressed, I began to get a strange dizzy-headache that then lead to a hardball forming in the pit of my stomach. During the last 45-minutes of travel, I did nothing but work on closing my eyes and slow breathing. I was glad to get off without having to use the little paper bag provided in the seat pocket in front of me.
The last connection, again a very tight-transition time, caused me to have to get directly on the flight to WA. I was in the very last row of this puddle-jumper airplane and knew from the get-go that it was going to be a rough trip for me. I didn’t open my eyes until the wheels touched down an hour and a half later. Meditating got me through the time without throwing up, but my body was one big knot, and it took everything I had to get my suitcase and find Kelley waiting for me just outside the airport’s doors.
I’m struggling with acceptance. Today is the third day of feeling like I’m still motion-sick with added muscle pain literally everywhere. I’m feeling so weak, dizzy, light-headed, and nauseous in addition to aggravating, whimper inducing pain at every point of my body. I really had wanted to use this get-a-way to write, read, and practice meditation and yoga while Kelley went off to his job. While I am doing some of that, it’s coming hard. I’ve been feeling a bit defeated in the whole practicing of acceptance. I have this gnawing doubt that my life with Fibro will never get better and that going on Cymbalta just maybe my only option.
But still, I plugged on the past couple of days searching for anything that proves I’m on the right path of rewiring my brain through meditation and mindfulness. I went down a neuroplasticity and meditation Google research path that took me to an open door of hope.
I hadn’t heard of Mindfulness-based Stress Reduction Therapy until I stumbled on the research paper titled “Mindfulness- and acceptance-based interventions for patients with fibromyalgia – A systematic review and meta-analyses”. The report talks about how participants in 8-weeks of meditation classes of 30-40 minutes a day caused noticeable, positive changes in their brains. This led me to find the developer of MSBR, Jon Kabat-Zinn (who I actually have read his book Wherever You Go, There You Are). I ended up watching a talk he gave to Google employees on their lunch hour: Mindfulness with Jon Kabat-Zinn. From there, I found various ways to participate in the 8-week course, but all of them would cost a decent amount. Then, I stumbled on something amazing! The course is offered online for free from Dave Potter, a fully-certified MBSF instructor.
I started my preparation for the 8-week class today. Instead of a printed notebook of the materials as is suggested, I’m creating a digital version. So far, I have it ready through week 1. Feel free to make a copy of what I have or follow along with me as I add the upcoming weeks in as I go.
Click arrows to go through the pages. Some pages have links to videos and PDFs.
I’ve enjoyed the meditation that I’ve done through Calm and Jeff Warren, but they tend to be short sessions. They’ve given me the thirst for more, and I think this is a good next step.
In my research, I have also learned that my impromptu travel planning and packing is not the best when you have fibromyalgia. I’ve found a few helpful articles by fellow spoonies that I will use for this home trip and those to come. Also, I’m going to take Bonine which will make me really sleepy, but with Kelley leading me around, I should be okay.
|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.
|Imageby 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 Smoothnessepisode), 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.
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.