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.

 

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.

That’s More than Four Miles!

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At the Christmas Village

Yesterday I walked a record breaking 8, 533 steps. I am proud of myself and extremely sore. Last night I cried. This is life in the big city for me. I love it here in Philadelphia, but you wouldn’t think so the way I have gotten grouchy, cranky and weepy. Two things are going on. I am exploring a beautiful city with amazing architecture, history out its ass, and sweet friendly people. The other thing that is happening is I am trying to fit two middle aged lives into a one bedroom apartment.

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Seeing into the future: I will conquer this

The latter is the most difficult. Brad and I had a three bedroom apartment. Each of us had their own office complete with our own closet. That autonomy made our marriage rather pleasant. There were times when we got stressed with each other, cranky at life, or just needing space and we could just retire to our separate spaces. This has ended. The idyllic existence is over. We must truly cohabitate as every inch of space in our apartment is being assessed and planned. Mountains of stuff are being crammed into spaces we used to have plenty of space for. I am moving boxes to one side of the apartment and back because there isn’t an extra room where we can leave them for when we need them. There is just one room, and then another with the bed in it. Brad has an awesome new job and all the pressures that go with that so he isn’t able to help at all really. I have been here a week and a half and frankly it is already driving me crazy. I keep saying, when the apartment is finished, when we are all unpacked, and organized I will feel better, but will I? Will I?

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My Gorgeous Man in his Work duds

 

Hubby and I were single for a long time before we found each other. We both had plenty of time to ruminate in our own company and to know what we liked and didn’t. We like our own space. I think it is getting to him too, me always being around, probably worse. He is an introvert. They desperately need their own space, but here I am. I am there in the morning when he wakes up and every minute of every day he is here. It is probably brutal for him. I think that is why we are both grouchy. It is part of the reason.

The other part is the physical activity. We are both worn out. Our life pre move was sedimentary other than for the occasional yoga. Now Brad walks to work and back. We walk to everything now like stores and restaurants. This is such a good thing because we need the exercise, but it is kind of like trial by fire. Between unpacking, moving furniture, trying to find the grocery store and just being a general tourist, my feet are wondering what the heck I am doing. Every day is a new physical challenge that I don’t really think about when I am walking, but boy does my body feel it later.

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The Beautiful Capital

 

I have been doing this for about two weeks, and before that we were on a cross country trip. Yesterday Brad and I walked all over. It was one of my favorite days in a long time. I got to go to the park, walked through the fancy Rittenhouse area, see my husband’s work, visit Christmas Village (an outside holiday market), ride on a horse drawn carriage, and walk through the city hall. I almost made it to the elusive 10,000 step goal, the closest to that goal I have ever gotten. Throughout the entire day, I had a huge grin on my face. I took a picture with a Santa on a motorcycle for crying out loud. When we got home, we relaxed with a couple of burgers. We were both exhausted. It was a big day, but winding down our bodies hurt and we began sniping at each other. A couple snips later I was in bed and crying and saying how tired I was. Brad felt so bad he rubbed my feet so I could sleep. It’s a rollercoaster with me. We started joking that maybe I should start taking naps. When Danielle gets tired apparently she gets grouchy.

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Well, ya know…Santa

I have figured out my plan for fitness. One day I will walk all over trying to find a particular thing, like a grocery store or drug store: there is my cardio. The next day I will move boxes and clean the house and that will be my weight training. It is working out. I just hope my body gets used to it soon, for my marriage’s sake. Mandy my friend from New York advised me, “The greatest way to stay active is by necessity.” Those words are so true, and I hope they lead me to a healthier lifestyle.

Inspiration Everywhere

Noelle Pikus-Pace Sochi 2014 Olympics
She won the silver!!!!! She is a Mom of two! What a badass!

 

 

This February’s Self had an article that had Olympic athletes passing on their inspirational habits. There were a few that seemed like they were speaking right to me. I’ve already talked about one, here is the second one:

 

“If I feel scared, I think of what I’m worried about and flip it on a positive thought. Instead of ‘What if I step on my sled?’ I say, ‘Keep your eyes focused on your feet.’”- Noelle Pikus-Pace

Pikus-Pace participates in the Skeleton. First thing I had to do what look Skeleton up. I had no idea what that could possibly be. Apparently that is where they ride a sled down a really long icy slop. FACE DOWN. That sounds super scary. So I am thinking this woman has balls of steel. I mean it is one thing that she is an athlete but she this seems like a really dangerous sport. That puts this quote in perspective for me. I like gutsy women and like to follow their advice.

This quote is how I have been feeling about most exercise, and I am guessing other people do to. I know Brad, my husband, did when we went to the gym. There are so many doubts that can go through people’s minds when losing weight. What if we turned them all positive like Pikus-Pace? Instead of saying What if people stare at me at the gym because I am fat, we thought I am gonna bring it at the gym so people will look at me with admiration. Instead of what if I get bored, we turned it around and said I am going to make my exercise fun. I guess this seems like common sense when you spell it out this way, but I can’t say I always do that. I can’t say that I think about it like that so logically. Fears come up so intensely sometimes that I almost can’t.

My fear is mostly failure. I don’t believe it is unfounded. You don’t get this chubby without failing at trying to lose weight. I haven’t been oblivious all this time. I have failed over and over again. If I focused on all those failures I would be paralyzed. Sometimes I am, sometimes like last week I give up for a night because of the feeling I get that it is all fruitless. I mean how pathetic is it to say I give up. I might as well enjoy my vices than live longer.  I realize the stupidity of it all, but emotions like pity and fear sometimes have no logic. When I am in that state it is hard to pull back, but maybe I need to have a planned logic that I use when this happens. Maybe I need to have something I say to myself. For instance, instead of I may fail, I will say I have planned for this. I will follow the plan.  

That can be my mantra. Brad and I have planned our meals as best we can. I have planned my exercise. We really have been more prepared this time than last time. I know that I have failed at so many things before and eventually been triumphant (college, quitting smoking.) I can do this. So my positive spin is going to be I have planned for this. I will follow the plan.

Do you have a positive spin you have put on your fears? Has it worked for you? Please share it here.

Good support

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My best friend Christine, and my exercise confidant!

My body feels different these days; I know this is to be expected when you start a new exercise but it feels ridiculous. My body feels like my old 75 dodge dart. When it was alive, it used to be reliable, but also had little ticks. To open the driver’s side door you had to turn the key and pull the lever, and kick twice. To use the radio you had to have the cassette tape half way in and out of the deck. At one point, to turn it on involved a key and a screw driver.

Right now my body feels like that. It still does what I ask it to, with some fiddling. I ask it to stand up, but it takes a little rocking on my butt, pushing of the hands on the chair, and grunting in my tummy. I am feeling old. I too, was made in 75 but I am not supposed to be old yet. I feel ancient, creaky, and sore. I don’t want to stop exercising, and my mom would say I am a baby sometimes. To be honest, I probably am a baby. I whine when I walk up the stairs to my apartment most of the days after I exercise. I have complained on here more than once. I get discouraged for sure, but you know the weird thing is that I have started to just get disappointed when I can’t work out. I get upset when I am too sore to work out. I also get a little ashamed. I feel like I am letting myself down. I have a pressure to work out everyday which I am hearing is not necessary after all. My best friend Christine is constantly reminding me it is okay to take a day off.

Doc Baxter wants me to work out thirty minutes a day for five days a week. The past two weeks I have only been able to do 40 minutes three times a week, because I am either sore or injured. I think after being inactive for so long, this is pretty good. I guess my fervor comes from the fact that I don’t want to stop all together. I also have years of feeling shame over not exercising. I am trying to do it all at once. However, I am learning what I know previously about food and exercise isn’t always the healthiest thoughts for me. I want to learn what I can do now, how I can break an unhealthy cycle for me.

So this is how it used to go, I would work out hard for like three days and then my body would feel like it is gonna die, and then I would stop and be ashamed that I stopped so I would never do it again.

New me, I am relying on the council of fit well adjusted people that I know who work out often. I asked my friends whether they work out on pain, and these are the reactions I got.

“You’re talking muscle pain right? I work out 5 to 6 days a week. Sometimes if I feel my body needs rest. As for muscle soreness, if I’m super sore and it doesn’t get better after a few workouts then I will take a day or two to rest the muscles. And having a post workout snack or drink with protein can help as well restore your muscles. I do a drink and I’m not near as sore for too long. And sometimes a really good stretch day is needed or a yoga day. Also plenty of water is needed!” –Valerie Denny Tolin

“One or two rest days are important during the week to avoid overworking your muscles. If I’m injured,I find alternate methods. I know I’m injured if I have a pulled muscle, tendon, sprain etc.” –Christine Pearson

“Pain is the reason I prefer doing Pilates. Pilates gives me muscle pain for sure, but when I get up and do them again the next morning, the stretching soothes the pain from the previous day. I always recommend doing a second day of working out if you are sore, but if you are still hurting on day 3 or 4, a day off is helpful. The suggestion above about having a protein snack after is a good one. I always liked an apple with peanut butter after a good work-out. These days I mostly just go for brisk walks at least once a day, but once I get a better handle on things, I’d like to get back into my Pilates. If you do nothing else, stretching is the most important thing you can do. As we age, staying flexible is the hardest thing to get back once lost.” –Marcie Blaylock

“To answer your question, there’s good pain and bad pain. Muscles ache after a good workout, and that ache can stay with you most of the time with an ambitious program. Injuries are another matter. Abusing an injury can cause long term or permanent damage. You are already getting a lot of advice, but get a heart monitor. Pulse rated exercise is the road to fitness. Also, you’ve been “sitting on your ass” in recent years, so go see a physical therapist. He/she can set you up with a sensible program that will avoid injuries. Also, you’re going to have to read some books if you are serious about fitness.”-Charles Eichelberger

And I thought this was so encouraging:

“I don’t think it’s good to be in actual pain when you’re working out, unless you are just into building muscle. I push myself to go so many minutes on the treadmill etc and get into my target heart rate for burning fat. I can do it without walking so fast that I get shin splits. I push myself to listen to a few more songs etc and I am sweaty & tired, but not in pain. When I do weights, I’m building up on reps and a little weight at a time. I should feel that it is hard and a challenge to make it thru the sets, but not painful. I think 3 times a week is a good goal. If you’re not used to it and don’t have a cheering crowd behind you, you will get burnt out or talk yourself out of going. Right now, I don’t hurt the next day, but I’m seeing big differences in my body. Do what your body can tolerate, try to build up a little more each week, and try to enjoy it by listening to music and tuning out everything else around you.”-Julie Trout

These are all awesome ideas and suggestions. I am so lucky to have people in my life that care about my health and are willing to help me. I also am going to try doing two days on one day off. That is my new plan and that will give me at least five days any week but will also give me days off. Today’s day off was really boring. I like having the walks to make things go faster at work. My walks break things up and make my days more cheerful. Today I just hobbled down to the park bench and vaped. BORING. I missed getting to see new things and watching people.

I think that emotionally my goal is to wipe out all shame related to trying. This is the thing that has always stopped me before. It is something that just comes up in my core sometimes without me knowing it. I have to break those bad habits. I have just as much right as anyone to get healthy. I am just strong as the next girl, well not my arms my arms are full of jelly. I mean I have an inner strength. If I bide my time, and if I keep plugging I think I can do this.