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 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.

We all need maintenance

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My Momma: The glue in our family

There are so many incredible women in my life. Beautiful, remarkable, talented, and really genuinely care about the people in their lives. It amazes me the lengths they will go through to take care of the people in their lives, but then totally neglect their own health and their needs. It is so difficult to believe after all this time the guilt and shame built into our roles as a woman, and especially as mothers. I am not a mother, but a daughter, sister, and friend to many. I watch from the outside, which can be more telling than inside sometimes. I watch these monoliths of strength hold up their families in ways that would make super glue want to patent them. They spend most of their days devoted to keeping their families safe, well fed, educated, and well adjusted. The culture of sacrifice pervades incessantly, to the point their always standing, always the last to eat at dinner time, and even feel guilty when they are sick. I thought that was an old way of thinking, but it is so prevalent they even make Nyquil commercials about it.

I get it. I really do, society says that if you spend any time on yourself that you are selfish. It isn’t men either, we do this to ourselves. Our moms, grandmas, and great grandmas gave so much of themselves. We feel this urge to be productive, useful, and loving at all times. It is not just a current expectation it is a sociological imperative. My grandma had surgery to remove cancer on her nose in the morning, and much to my dismay, that afternoon was making my Grandpa a sandwich.  My Mom still can’t take a day off and all of the kids are grown and moved out of the house. My sister in law who is the best mom I have ever seen, felt guilty last week because she was so sick she couldn’t make breakfast. She has a very competent husband, my strapping brother, who makes a very delicious breakfast. I know, I have eaten his biscuits and gravy and they are better than my own momma’s (Please don’t tell her.) My nephew is probably better taken care of than any child in the world, and that is not Okie exaggeration.

I am not making a case for neglecting of children or any other responsibilities. I am trying to impress upon my sisters, mothers, and friends to stop putting your needs last and please breakup with the guilt monster.

“Heart disease is the leading cause of death for African American and white women in the United States. Among Hispanic women, heart disease and cancer cause roughly the same number of deaths each year. For American Indian or Alaska Native and Asian or Pacific Islander women, heart disease is second only to cancer.” –That’s from the CDC website

I believe that there is just too much. We have too much in our lives anymore. We need an exhaust vent. I am not a parent but I need my alone time. I need to do things that make me feel autonomous. My hubby and I are eerily close, but we both need time off. He will play video games all day if he wants. He doesn’t need to be productive. He understands the need to vent the steam, and doesn’t feel guilty about it.

Everyone works now, and I am a feminist so I am loving that, but with women still shouldering most of the household responsibilities it means most of those women are over worked and stressed. Why is there guilt when a day off is needed? Why do we feel like we have to explain our time? I wish my Mom was more indulgent. It is not selfish, its maintenance.

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I’ve begun to really rely on my yoga maintenance. It makes my mind calm down. My muscles relax and my heart be more kind to my loved ones.

Even inanimate objects require maintenance. Cars need their oil changed. Houses need gutters cleaned and filters changed. Don’t we deserve better than inanimate objects? Please, if you are reading this, find something you love doing that is all yours and take time out to do it. Even if it is super small like twenty minutes a day, please make sure it is yours and that you feel amazing after you do it. Maintain your sanity, and in turn your heart and soul. I have been doing yoga, and I love a nice long bath. My sister likes the hard core stuff like rowing machines. Art is fun, meditation, journaling, or reading, even just sitting down with a trashy magazine is good. Women, mommas especially, need restorative time to themselves or even time with friends. Please if you feel guilty call me. I will tell you it is okay. If you need permission, I will tell you how much you deserve to indulge. It’s not selfish. It is maintenance.

Many mistakes

 

Hello Blog Followers! I am so sorry it has been almost a week since I posted and that is because I had a really bad week. Wednesday was one of the most rotten days I have had in customer service and I have been doing this almost fifteen years. I was working taking calls, like I do, and every call from nine in the morning to one in the afternoon yelled and argued with me. I am not exaggerating at all. Sometimes you don’t know what comes first, your frustration or their yelling or if it is all a simultaneous poopy experience. Either way I really lost it. There was a time around eleven that I told the person next to me that I just wasn’t going to take anymore calls and I sat there for a full five minutes trying to think I was making some kind of stand. I just sat there in protest for five minutes. I thought I am not taking a call until they come over and make me. I am just going to sit here and zen out. I tried deep breathing. I stretched. I tried thinking about all the wonderful things in my life. I tried to picture all the things I wanted to do with the money I was making. It was fruitless. My blood was still boiling, but I came to my senses and decided to take calls anyways. The last call before my inevitable break down was a man arguing with me over every thing. I mean he didn’t like one thing I said and thought that I was really putting him on. It was a very humbling and aggravating experience. When he finally asked for my supervisor I was so relieved. I then hung up my headset and started bawling. In fifteen years I haven’t ever broken down like that for work but I was really going at it. My supervisor came over and asked if I was okay and told me to step away for a few minutes. So I went to the bathroom and hid in the stall crying and puffing like you do when you are really going at it properly. I was talking to myself saying things like, some people don’t have enough food but I just have people who yell at me. I repeated that over and over and it still didn’t seem to do very good. Luckily when I finally went back I only had about 15 more minutes to be on the phones and then didn’t have to hear anymore yelling.

 

When I got off work I was tired and beat and still upset, and I fell into the car and started bawling. My husband was so sad for me, and held me. We then went and got burgers. Now here was our thinking-Wednesday was my last day of work before vacation and on vacation we couldn’t eat organic all the time so why try and we were now officially on vacation and I had a bad day. Ain’t that bullshit? We really know how to explain our deviance don’t we? We ate Jack in the Box, and I felt awful.

 

The next day I struggled with the answer to the problem. Not only did I fail at keeping my resolution to not eat processed food, and to eat good for my body, but I also broke down. I didn’t find the joy in my day. I didn’t try to keep a smile on. I have been struggling with that since Wednesday to figure out how to not do these things. I didn’t want to write until I had the answer.

 

Unfortunately for some of this there is no answer. My husband and I talked about the cheating and decided that when I have a bad day or him and we haven’t already prepared dinner we will go to a very nice vegetarian cafe we know of that serves the most divine mushroom soup. The other option is going to our neighborhood coop that has a wonderful deli with many organic quick foods, and we will also get the rosemary Ciabatta bread they sell from Zeppoli’s which is always a treat for me. We have to sometimes work around our neuroses, and I think that will work.

 

Now the breaking down. I don’t know if you can live a life without breaking down. I think that I was trying so hard to not be sarcastic and bitter that it built up inside and I exploded. I think you have to have a valve were all the hurt feelings get out. I am not saying you have to wallow in it, but if you aren’t heard by anyone then you start to feel really put upon. I think you need to really get it out, but then once you do, maybe then you can let it go and move onto the joy.

 

Also my husband gave me a really good tip he said that he sometimes pretends that the angry customers are children. He says that is the only way he can have patience enough to understand unreasonable demands. We also talked about how customers that are yelling are only really trying to desperately seek respect and control over their on lives, so if I maintain a cognizance of that then perhaps that will give me the wear with all to handle it. That might work, but I might just go back to my tried and true method of a sarcastic funny remark, but follow it up with the new methods of trying to remember why I am there and finding the joy in my everyday.

 

I am still on vacation, but am trying to eat healthy again. I guess the main thing is not to sulk in your mistake, right. Make a mistake and move on? We have been eating our veggies and trying to get in our servings at the very least. I will keep you updated on how it is going.