Can Fibro be funny?

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It is really cold here. I have to bundle up to go to the Physical Therapists office.

This morning I was heading out to the physical therapist’s office for my noon appointment when I got a phone call. I had already done the necessary checklist: appliances turned off, clothes in their proper places, face made up, hair done, keys, vapes, phone etc. I double checked all of those things because my brain was feeling asleep. You know that feeling where you haven’t gotten enough sleep or you haven’t eaten? When you have fibromyalgia, they call it fibro fog and it can happen even after eight hours and a full protein filled breakfast. So, it’s sort of random.

Then I got the phone call. While talking to this person I closed up the apartment and walked to the elevator. When we got off the phone I ran back to the door and checked. I hadn’t locked the apartment door. I locked it and then walked two blocks to the bus stop. As I was walking up, I panicked. I thought Did I bring the bus tokens? I walked quickly to the bus and took off my backpack and put it on the bench to search. As I removed it, I noticed my shoulder felt weird. I reached up and there was a zip lock baggie underneath my bra strap.

Okay I know that sounds weird, like I was rolling on a bed of zippies and one just got stuck, but no. I have an icepack that started leaking so we put it in two ziplock bags. I stick it under my bra strap because my shoulder swells up for no reason. So I have to put on an icepack every morning. I asked my doc about it, they have no idea. So I took off the ziplock and found the tokens in my book bag. I have no clue how they got in there. I mean I must of put them there but I don’t remember. I sighed in relief and slumped down to wait for the bus, but I couldn’t remember which one so I asked the next two buses, “Do you go to thirty seventh?” Finally one guys said, “No you want the twenty one.” After I was on the bus I remembered I could have just looked it up on my phone and I was going to thirty eighth.

Just as I was coming to this revelation, husband texted me, “Did you eat?” I said, “Ummmm….no…I forgot.” Then I was thinking, dang it, I wasn’t hungry until he said something, but my appointment was at noon so I had no time to get anything.

I reached my appointment desk and said, “I have an appointment with Melody. My name is Danielle Toone.”

She replied, “Her name is Melinda, right?”

I said, “Yeah, what did I say?”

“Melody.”

“Oh, sorry.”

“Also, your appointment is at 1:00.”

Once I was down in the restaurant sitting at the table free from any more decisions I thought about the fact that before fibro I would have beaten myself up for days about all of these mistakes. I just thought I was ditsy. Nope, I just have episodes of dits, do to that fickle bitch fibro. Don’t get me wrong Melinda has been the most amazing medical professional to me so I feel bad about messing up her name, but I know why it happened and it’s a relief. I’m not mean spirited or an idiot. That is a relief. Sometimes I can make people laugh with my stories and that is fun too (comic relief.)

I am just now getting into fibromyalgia social media to notice the influx of other people who suffer from this phenomenon. I am an intelligent women who is struck with momentary loss of brain. That’s all. It is horribly inconvenient, and mildly embarrassing, but at least I know what to call it and it’s only temporary. I think we should call it #fibrofunny instead of #fibrofog. I much more prefer to think of it as something that doesn’t change me. Fibro fog sounds like something that is debilitating and blinding. I want to be able to say Well this just happens and laugh it off. So, I have fibro funnies. That’s it. Then the next day, or even later that day I am back to be the smart, sexy friend you know and love.

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If I knew anything about street artists, I would tell you who did this, but I love it.

 

Reaching for Stability Inside

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The sign at my new favorite coffee shop

 

In Boise I was surrounded by people who were more introspective than myself. I loved listening to them talk about their beliefs, convictions, rituals and practices. I grew up in the church. I believe in God with all of my being but I don’t practice my beliefs that much. I mean I pray. In the evenings I thank God for my loving husband, family, and friends. I then talk to him about what’s going on with me, like I would a friend. That is as far as I have gone in the past twenty years.

I am a Christian but I have been disillusioned with Christians lately and I think that has made me resistant to the rituals surrounding my faith, like going to church and listening to preaching. It’s been absent in my life for a long time. I think that I have been missing it without realizing how much.

Lately I have adopted some new spiritual practices that I have been finding comfort in and I believe have strengthened my belief in a loving God. I am protecting those parts of myself that I had given away to other goals. I have realized a need to pray deeper and to experience more calm and stability that a spiritual practice can provide. The interesting part is that most of the ways I am practicing, while also give glory to God, don’t come from the church or the bible. These are things anyone can do, and they could possibly help anyone feel more stable and grounded in these tenuous times.

I first learned about mindfulness from the book “Living Buddha, Living Christ” by Thich Nhat Hanh. The book was an interesting read because there are so many similarities between the Christian belief and Buddhism.  I recommend it to anyone because it is a good read and not too touchy feely. It is interesting. Of course, the western world is embracing mindfulness by the droves now. I have been submersing myself in it while doing yoga and meditating. I have been listening to my breath and trying not to think of anything else for at least thirty minutes a day. I have never been one to be mindful before. I am known for doing several things at once. I enjoy multitasking for the most part because my mind moves that fast naturally. I didn’t say it thought great things, just that I think fast. It is my gift. However, even cheetahs rest sometimes.

There are so many articles on the health benefits of meditation that I won’t talk about them here; They claim everything short of growing a new brain. I can only tell you what it does for me. It helps me to slow my body down. The connection between my body and my emotions is strong. So if I can calm my breath down. It moves throughout my body. Taking deep breaths involves using all of my thoughts and it really does translate to all my limbs. Seriously, try it for like three minutes. I know that I didn’t believe it, but it really does calm me down.

It also calms my mind because I focus on just my breath, and ignore everything else. If a new thought comes I just ignore it. I don’t think of nothing because that would drive me crazy. I haven’t gotten that good yet. I have just been concentrating on my breath, and this thing they talk about where you breathe through your limbs. I know, it sounds hanky right? It really works though. You take an inbreath and picture it going to your arm (I know that isn’t how biology works, but just picture it.) Then when you breath out, you imagine that arm relaxing. If you do that for your entire body. I promise you, you will be goo. Complete and utter blissful goo where ever you are. Sometimes I do it before bed, after I pray and I am telling you it is so relaxing I just fall asleep.

There are meditations on a free ap called insight timer. All of them are good but look for the ones that are described as a body scan to walk you through what I am talking about.

The other practice I am adding to my life is to use affirmations every morning. I’ve found it is really helping me with my life because I have been so down lately. I don’t know how it will work during my dark days because I haven’t had any since adopting this practice, but so far it is helping me to be more focused. Affirmations or Intentions can be anything but I have been using three so far.

  1. I will honor God with how I care for my body because it is the temple of the Holy Spirit. — That one is from 1 Corinthians 6:19. I like it because it motivates me to take care of my body and my mind. It reminds me that taking care of me is important enough to make a priority. I, like most women, usually put myself last on the list of to do’s for the day.
  2. I will have the courage and tenacity to create art — I have been doing this so I will be fierce in my writing. I think any kind of art takes courage because it is hard to put your ideas out there. I need to have more tenacity and not get discouraged when I get something wrong. So, this intention is important to me, to get me to the computer.
  3. I will strive to love actively and deeply — This one I believe is the most important because I want to constantly show the people I love how I feel. I want to fill my heart with love always and I cling to that right now, because there is so much hate out there. I will not let it infect me. I want to love even those who want to harm me and those I hold dear. The last part is the hardest. Even though I try to be loving, it is difficult not to harden my heart to the people who want to hurt people I care about. Because I know nothing gets accomplished by my heart going to the dark side, I decided I needed a daily reminder to keep my eye on my soul. I will have the courage to love deeply and I encourage everyone to use that one right now. If everyone woke up and put love first, boy wouldn’t this be a better world.

These are a couple of ways I am trying to keep my mind, body, and soul this year. I encourage anyone to try to find something that grounds you, if you haven’t found it already. I’ve learned that I can’t control politics, religion, or other humans, but I can control how I react to all that. So, these small things, setting myself on a path every morning, are helping me stay the course. I need to be reminded every day to live my life fully, mindfully, and with love. This is how I am going to ground myself and keep my head.

 

The Monster In My Pants

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After the tears I just had to get out of the house.

I’ve been thinking about freedom recently because of the new president, this town which is the birthplace of freedom, and my continual grasp for freedom. I don’t mean the rights that are in danger right now in this country: like free press, freedom of religion or gay marriage. I mean the freedom of movement. I am desperately clinging to my freedom to leave the house when I want.

I feel like I should explain what’s going on with me because I am not exactly clear on what’s wrong so I have refrained from writing too many specifics. Something is wrong in my crotch. They don’t know what it is. My gynecologist has said it isn’t a feminine problem, but the other two doctors I see aren’t so sure. Second and third opinions are forthcoming. What we know for sure is the fibroids aren’t causing this pain, and it’s not endometriosis. So we are clueless as to what is causing my pain. I have had relief but only when I am not premenstrual or menstrual or for two days after. This relief between my cycles comes from the physical therapy and yoga I am doing. Around my period though it is as if someone is stabbing me right above my hip. Add this to my hormone fluctuations and my fibromyalgia and life is really shit when Aunt Irma visits. I have been entertaining this pain for about five days so I hadn’t left my house until yesterday to physical therapy, and I didn’t want to go to that either because of the pain.

My lovely therapist tried to massage and move the pain away to no avail. The examination turned into a consultation with another therapist to sadly no answers. There was just too much poking. It really is too much. I am sore today from the movement and the examination. My physical therapist is amazing because she has brought so much relief. I believe she will find an answer for me, because she is that good. However, these exams are really embarrassing and tiring. It is almost like getting a pap smear once a week. I am emotionally exhausted too. I am tired of hoping that there will be an end to this pain, when none is coming.

After my exam I was so depressed that there still wasn’t an answer for the swelling and the pain. I sat on the metal chairs outside this building full of doctor’s offices watching people with wheel chairs get dropped off and picked up feeling sorry for myself. I was full-on sobbing and vaping. Like…seriously… I stopped when a particularly sad looking fellow limped by with a foot cast on and he was wearing a robe. His face was a stone. The look of despair in his eyes was shocking. When I saw that my messed up brain said Poor guy, I should tell him it will get better.

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Beauty sometimes makes it better

Yeah, you see the irony. I mean what would this man have said if I had told him it will get better while crying. I wiped my eyes and started to leave and then it was like an alarm went off in my head that said, “Don’t go home.” So I took off walking. I walked over to Penn campus to check out all the beautiful brick buildings. I sat in front of the Starbucks watching people until I started to realize that all these kids had potential. When that made me feel pity for myself, I got up and kept walking. I walked to the river and stood there for a while looking at the train station and the river feeling lucky for the first time that day. I took a picture to show my family. We play “Where is Aunt Danielle Today?!” They are in Enid, Oklahoma and I like to show them all the landmarks of Philadelphia. In turn, I get pics of my smiling nephew. I get the better end of the stick for sure.

I finally decided to go home then. I guess I just didn’t want to go home and cry. I was tired of being home. I waited at a mall food court until my husband got off work.

I think my new tactic is to stay out of my house as much as possible. I am a vibrant person. I need human interaction. When my first instinct is to be easy on my body, I need to rebel against that because my body and my mind needs movement and excitement.

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Can I make this my new desk?

I am at a coffee shop today. I am looking out the window in Old city watching people walk by. I figured if it worked yesterday maybe it would work today. I will just stay out of the house as much as possible. I want to build memories of this city. I want to declare and take advantage of my freedom even if it hurts. I am leaving the house even when I am in pain. I am done hiding my pain in the dark. If I have to sit for a while or wince openly then I guess people will just have to deal.

I will just stay out until I create a memory. Tonight I am meeting a friend for dinner. Let’s see how that goes.

 

 

 

The Best I Can Do

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Making Physical Therapy fun: I wanted the fake people to look like Star Trek characters. Is that Captain Kirk at the bottom? Why yes it is! 

Mom exercises every day. She’d wake up hurting and get ready to do her exercises. I thought she was crazy for years. Who thinks, Oh, I am in pain, I think I’ll exercise. It goes against all the logic I’d ever known. When you’re sick you lay in bed, right?  I’d say, “If you hurt why are you doing exercise?”  She would reply, “I have to exercise this morning or it will hurt more later.”

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My Momma: my eternal fitness hero

I didn’t really understand what she meant until I too developed Fibromyalgia. Now I am amazed at her resolve. Seriously. That woman is made of steel. The first couple years of Fibro kicked my ass. Waking up in pain is a buzz kill. Your whole day can be tainted. Waking up with fibromyalgia is like someone beat you with a baseball bat the night before and then you drank a liter of rum. Every morning you are sore and hung over. Mom woke up in that fog every day strapped on an exercise bra and just got to work. I bitch and wine like nobody’s business.

It seems like a weird idea, right? Think about waking up with the flu and being told the cure is exercise. Um…yeah, wouldn’t you think that’s bullshit? No, you would retreat to bed and not wake up until it ended. The sick part is, it never ends. You will wake up every day with the flu, and the only way to have the rest of the day is to exercise through it. Then the next day, start all over again.

When Mom told me she had to exercise I thought she was crazy. I didn’t understand then, what I know now: with Fibromyalgia exercise is essential. I told the doctor that I felt like a piece of machinery that rusts when it sleeps or sits too long. If I don’t stretch and move my joints, then I am in pain all day. It’s like I am lubing my muscles and joints. Once I have done that, then I can move onto my day.

My physical therapist, Melinda Gross, said that with Fibromyalgia you have to challenge the body regularly with controlled “stressors” in the form of exercise because it increases the body’s tolerance. So I have to increase walking, yoga, chores, strengthening exercise because it increases my baseline threshold for pain and stress.

Did anyone else’s dad ever make that joke? You know the one after you’ve been complaining your head hurts, and Dad offers to step on your toe to make your head hurt less. Turns out, that’s kind of a thing.

In other words, I have to put my body through a small amount of pain so that I am not in greater pain later. Also, if I put my body through more pain then what I have built up then I am in serious pain for days. So, I have to measure my activity every day. Once I painted a hutch and for the next three days the couch was my best friend.

When I think about it too closely, I get angry that I didn’t figure this out sooner. It is also very hard not to be angry that I can’t just wake up and be fine like a normal person. I get depressed at my pained muscles and stiff joints. It is easier to stay in bed. It is easier not to go to my twice a week doctor’s appointments. It would be easier if I could just take some pills to make the pain easier and just dribble into my pillow.

I was not happy when that’s all I could do, but it didn’t require much strength of will or physical strength. It was easier, but I wasn’t happy. My loved ones deserve much better than that, and so do I.

When I think about just sitting and sulking on the couch or skipping my doctor’s appointments I think about my husband. I am lucky, because he is the most patient and loving man. He is there every day telling me it is okay I am in pain and it isn’t my fault. He is my strength when I don’t have any. He deserves to have a wife that feels good about herself. I concentrate on that love when I am trying to get up to start my day. I concentrate on the love that I feel for my family and my friends. I concentrate on the fact that I want to soak up moments with them. If I am in pain, I will just be thinking about the pain.

I’m not perfect every day. I still have days it takes me a while to pull my head out of my ass and get moving. I was lamenting the fact that it takes me almost an hour and a half of exercising and icing to get me to feel normal/good. I did an unofficial Facebook poll of my friends and some of them exercise two hours a day. These are people I assume don’t have fibromyalgia, or any of my other health problems. So, I am not alone. They too use exercise to feel like themselves. I just have a large cattle prod getting me to the yoga mat.

Sadly, some days it still isn’t enough, but I am getting there one yoga work out at a time.

Wrapping Revelry

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I love wrapping presents. Most of the people in my life don’t understand, and consider this task a rather fruitless or joyless task. My mom only does enough wrapping to disguise the gift and she even finds this tedious. My friends sourly say things like, “Oh, I’ve got to wrap presents tonight.” You can hear the trumpet blowing in the background sadly Wahhhh wahhhhhhhhhhhhhh.

I can’t wait to wrap my little parcels. As soon as I get the first purchase home, I clean off the table, turn on the Christmas music and arrange all my wrapping supplies. It is one of my favorite things to do all year. I used to have a plastic tub filled with wrapping paper, bows, tape, and scissors. I had to get rid of it in my new apartment and I miss it. However, I still buy enough for the current year and take my time making each package look pretty.

I love wrapping for many reasons. Some are selfish. I love looking at the shiny wrapped packages hanging around our house, like tiny promises of momentary joy. The colors reflected in tiny lights or flickering candlelight. It’s kind of like marketing for a movie. Those packages are a small preview of the shiny faces to come.

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I love wrapping because I feel a release in the process. For moments of time I am thinking of the person who I bought the gift. Do they like this color? Does this paper remind me of them? Santa Claus paper is always reserved for Mom. Blues are reserved for my sister. I try to have funny little cute images on my nephew paper. I even have slightly staid manly-ish paper for the men in my life. While wrapping I think about the person, memories and likes and dislikes and try to imagine how they will feel about the gift or the wrapping. For whole moments, I am outside of my mind and anything that stresses me. I am joyful with anticipation. It’s like a meditation. I picture the joy on their faces for just a little bit, hoping it takes them out of their worries for just a minute.

That’s the other thing I love. It is a beauty that will last only a little while. So much of artifice and art is meant to last a long time. Wrapping is meant to be torn apart. ­­­­­I love the idea of someone thinking Look how pretty that is and then ripping it to shreds. I love watching people tearing apart wrapping paper. That is so fun! I feel like small pleasures here and there are all we can really guarantee in life. To be lost in a little bit of time here or there. To be lost in something beautiful for a minute like the look on my sister’s face when she opens something surprising or lovely.

No one can count on the big stuff. Big moments don’t last very long and then you’re only reaching for the next one after that. We live in the small moments: Brad kissing me unexpectedly or tearing up when I am happy, my Grandma gushing when she is proud of me, my sister texting me to call her out of the blue, Mom confiding in me, or Caleb telling Grandma how he took lead on his school project.

I soak up all this happiness and marinate in it. If I don’t collect them. If I don’t pay honor to them, if I don’t hold these moments almost sacred, then they fly by without notice. I only remember the pain. Because sadly, pain is memorable on its own without me adding my notice. Like my little offerings to my family, I think God or life offers us small presents in moments of love or beauty and the key to true happiness is to hold them in your mind dearly and most precious.

Are there any small rituals surrounding this holiday time that you adore as much as I do wrapping?

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The next morning the candlelight flickers off the wrapping paper to illuminate my yoga mat!

Out of Mourning, a New Resolve

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I am sorry that this smile is gone.

My beautiful, young, full of life cousin just passed away in her sleep. Ashley was nine years younger than I am. She passed away at thirty-three due to complications with her ongoing lung disease. She will be missed by so many. I really admired her spirit and determination. See Ashley has had lung problems all her life. She spent so many days and nights in the hospital being watched over by her poor Mom and Dad who worried constantly. She was a slight little thing as a kid and grew into a rebellious youngster. All of us are rebellious at one point but when you have bad lungs smoking and drinking are even worse. Luckily this time was short. She pulled it out quickly and then focused on her health. Ashley died being a wife, a devoted step-mom who undeniably adored her charge, a spitfire (crazy smart opinionated women run in my family) and amazingly a weight lifter.

It would have been so easy for Ashley to ruminate on the fact that she was born with a set of defective lungs. She could have sulked and stayed in bed, but she rallied and built a full life for herself. Not only that but she built her body up. She worked out steadily and ate well. She built up a business. To see her do all that with the body she was given, makes me feel inspired to do the same.

The past two weeks I have been requiring myself to do yoga absolutely every day. You know that hashtag #yogaeverydamnday? I haven’t really understood that because I feel like it has a negative connotation and yoga has always been enjoyable to me. This past two weeks I have been understanding it. There are days when I have had to crawl to my yoga mat and start by laying on the floor to stretch lightly. I slowly loosen my creaky muscles until I can move without pain. Then I move on to stretches that require all my muscles. It has become a requirement for all of my days. If I don’t do it then I will be in pain all day.

I think that it would be easier sometimes to just stay in bed. I have spent many days this year in bed with the pain and I am sick of it. I hope the ritual I have adopted will keep my out of bed for the foreseeable future. I haven’t tested this theory during my dark days when Aunt Irma visits, but I guess we will see. My physical therapy is working and I am so happy about it.

I think this new resolve is coming from a place of remorse for how much I have let my body sort of fend for itself against my vices.

Perhaps I can take up her mantle of good health. Maybe someday I can be someone people look at and say Hey, she had all that pain but she still put her health first. I hope so. I just have to keep making that uncomfortable walk/crawl to the mat every morning. If I can build on that. I might be able to follow her example.

My Ego Hates the Bow Pose

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I can finally do this pose for twenty seconds on one foot. 

I have been reading a lot about yoga because I don’t have a gym or a studio I go to. I am learning on my own. I research every pose before trying it. In my reading, I’ve come across countless articles about ego and how ego can lead to injury. I am not going to assume that people injure themselves because of ego.  I could injure myself because of concentration issues and definitely my horrible balance. I have to admit feeling as if someone would need a small amount of ego to try some of the poses, like a handstand. A handstand could be significantly dangerous if done wrong. I have yet to attempt one because I’ve only worked up to thirty seconds on my planks. I am shaking still at second twenty five. I think I need to be able to do the plank for a lot longer if I am ever to do a handstand. I am working on buffing up my arms because I have trouble with pickle jars. I mean I love pickles, but it’s more about the functionality of having arms that can lift, move, and open things. Being able to do a handstand would be just a fun by product of that.  I think it might be years before I try a handstand. I am not putting myself down or pushing my dreams down.  I just have to know my limitations.

Why is so much literature out there about how not to get hurt with yoga and how to put your ego aside? Is that because we so often want to share our practice with others? I do find myself bragging when I have mastered a new pose. Sometimes it is a little ridiculous because I can only do the very basic moves. It’s like a sixteen year old bragging about being able to tie their shoes. I’m like, look at me I can do a twenty second plank! My ESL class was counting me down while I was showing off. All of them shouting 1, 2, 3 etc., when they said twenty I got off the floor to shouts of jubilation!

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I know it looks like I’m bent but it’s just my butt.

I don’t think it is bad to revel in the accomplishments but I think it’s important for my practice that I sort of marinate in the process of getting there. The vernacular is being mindful but I don’t think that is even appropriate. It’s more like savor. While working into the poses I don’t just want to be mindful of where my body is placed or how my muscles feel. I want to love how they feel. I want to enjoy it so much I feel the need to slow down and honor the way my body feels.

I’ve been desperate to open my hips up because of they are in pain. I do a lot of poses that stretch my pelvis and open my hips. In addition to Bound Angle Pose, Hand to Big Toe Pose, Reclining Bound Angle pose, countless upward dogs and many more hip openers, I heard that downward facing dog with stacked hips is one of the best hip openers. So I watched a video how to do it. After the video I went to my mat and started my practice. About seven poses in I usually do downward dog, but this time I lifted one of my legs held it there for ten seconds and then flexed my foot and bent my leg. I did exactly what the video told me to do. Boy did that feel good… at first. I was really enjoying it so I tried to deepen the stretch and then felt a ping of pain. It wasn’t a major pain. It was just a twinge that I knew could have turned into a major injury if the twinge hadn’t shocked me into stopping. As it was, my right hip was sore for about two hours. I was lucky. After researching the pose more thoroughly, I realized that I didn’t square my hips right. Was it my ego that convinced me to try a pose I hadn’t properly researched or desperation or both?

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Close but not bow pose
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It felt closer than it looks

Is it ego that lets me try yoga at all? I am a plus size person who has no previous exercise experience. What business do I have trying something that seemingly only thin impossibly beautiful people can do? At least that is what I used to believe before all those wonderful plus size women blew up Instagram like Dianne Bondy, Jessamyn Stanley, and Dana Falsetti. So I think there is a little ego involved in doing yoga at all, on many layers.

There is a challenge to starting any exercise and then continuing it after failing at exercise over and over. In yoga I have failed a lot. Not only is my downward facing dog with stacked hips a failure the first time, but I can’t do a bow pose to save my life. I can’t reach both feet behind my back at once. (I can’t do many poses. Bow Pose is just the one I am working on now.) The only way I can continue with my practice after failing so much is not to look at it as failure. I have to look at it as progress. Just getting on the mat and getting closer is a big deal.

I used to quit exercise at the first sign of failure but now I inch towards things I never thought I could do. Savoring where I am now is what makes me able push through the doubt, but also temper my enthusiasm. Research and living in the pose, not just keeping my mind on it, but thoroughly enjoying the pose is the only way I am going to avoid a downward dog debacle again. It’s the difference between stretching, like To The Oldies, and yoga. This “mindfulness” should be inherent in the process, right? Maybe instead of my Ego getting the better of myself, I just lost sight of that. I will remind myself every time I get on my mat, that if I am taking the time to do this, then I better really appreciate it.