Selfcare

Ring in the Holidays

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I am sorry for the lapse in posts. I have had a few life events that have made it difficult to post and I hope to explain a few of those here. I hope everyone is well and I look forward to bringing you more posts with this new year. Stay Mighty and Hug a plushie everyone.

It has been an active, interesting few months for me. I have had a little time to reflect on this past year and it has been quite overwhelming. I have been faced with a brand new life as a single dad. I have found a new job, career, car, and people. Change can be good but it is difficult for someone with an invisible illness.

Change is difficult for many reasons. One of the mainstays of a routine is that you are able to plan accordingly. With an illness, you do not know when the next fibromyalgia flare up will be, if the day with lupus will give you enough energy, or if yours Crohn’s disease will give you time away from the bathroom. Having a routine allows you to be able to plan around those when you build in time or because you expect things to go poorly.

Holidays seem to complicate those times.

Last minute parties, rushing to get a gift, cleaning the house for guests all seem to through those routines off schedule and it makes it difficult to find time. It always is hard to tell someone who invited you to a last minute event “No” but we really are running on empty and we are just trying to get back in a grove. We face so many issues in the day that when something does come up, our bodies scream, “Please no more.”

I have gone and seen a new doctor in the past 2 months. My PCP had gotten a Rheumatologist recommendation and I was eager to see what help I could get. The doctor was kind and receptive and confirmed every diagnosis that I had been given. She also started me on a new medication and did quite a few tests. My routine was soon uprooted by the new medication.

Introducing a new medicine is hard on a person. The side effects, which can be many, take hold and throw your body off. You have (yet another) pill to remember to take, make sure it is taken with food or not, and what clashes with the other 6 medications you already take (at least for me). Your routine gets thrown out the window. Add in the fact that we are knee deep in the holiday season and it is a recipe for disaster.

I am however, still going strong. I have been able to make a trip with my girls across states to visit family. I have held steady at my job. I have continued on with my life. Even with this “Playing life on hard mode”, I have tried my best to keep myself leveled up to be able to continue. I encourage you all with invisible illness to not give up, the routine will come back, and it will get better. I am proud of each and every warrior that is fighting their own battles. To those who help champion us with illness, I thank you from the bottom of my heart. You truly are great people.

For those who interact with the invisible illness community, take a moment and see if someone you know is doing OK this holiday season. Reach out and call or text some encouragement. Give a little leniency to someone who cannot make it out to your party or event. Remember to give the gift of grace to those who need it.

Happy Holidays and #hugaplushie my friends

 

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Take me home, Country roads.

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Music is such a powerful healer. The sounds and vibrations can help break up stress and tension. Feeling the the beat can raise or lower your heart rate. It provides positive feelings and an escape. For someone with chronic illness, this can be such a welcome escape.

When I am going through a fibromyalgia flare or when anxiety starts to pump adrenaline through my body, I have a method of calming down. I use a sensory deprivation where I go to a dark room, put a nice heavy blanket on, hug a plushie, and I listen to music.

My personal favorite is the Lord of the Rings soundtrack (Fellowship of the Ring, Track 17 The Breaking of the Fellowship). I hear the notes and get lost in the music. It gives the soul something to attach on to and it pulls the body with it. By closing off the rest of your senses, with darkness and being alone, you get swept up in the sounds. It is amazingly peaceful.

In difficult times, music has a way of helping us find a way through. I have known quite a few people going through a bad break-up and listening to their couple’s song over and over. I distinctly remember living in a 22-foot pop-up camper with my family (6 people and a dog for 6 months) in a trailer park. The trailer site next to us had a husband and wife who fought like cats and dogs. Being a trailer park, and VERY thin walls, everyone in a 5 mile radius heard everything, much to our regret. The husband who leave each night slamming the door and the wife would play I Will Always Love You by Dolly Parton, sung by Whitney Houston while drinking wine.

Every night.

As a teenager, this was not a fun event each night. However, I realized that this was a coping method and was a way for her to calm down. The next morning they would come out of the trailer, smiles and hugs until the next evening. Now this is a very unhealthy situation and was horrible for them (and all of us around them). It has shown me that music can help in a very difficult situations and lead you through them.

I am currently facing a huge hurdle in my health. I am having my Tramadol removed from my medication. My doctor is no longer allowed to prescribe it to me. He was very chagrin while telling me. He was upset. Due to the “Opioid Crisis” I am found to be no longer fit to take it. After almost 6 years of being on it with little/to no side effects, a much higher quality of life, and one of the backbones of my pain management, I am being told there is no reason to have it. My chronic pain and illness disagrees.

Strenuously.

I have have to agree with it. I am having to go through a new cycle of pain management. I am having to adapt to life with severe pain once again on a daily basis. So in order to do this, I have been bringing out music once again. My new favorite is Country Roads by John Denver. I have listen to the track 20 hours in the last month alone, though not all at once. Most times it is only about ten minutes. And finding ten minutes to allow my body to relax and get a break from feeling is sometimes all I can get.

I will take it.

#hugaplushie my friends.

PS 

I have seen my readers in Germany SKYROCKET! I wanted to call upon all you out there and thank you with all that I have. Hugs and love to you all! I will being doing a special post for you all! PROST! ZUM WOLH!

Support day.

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This year has turned into quite a roller-coaster for quite a few people, myself included. I , I feel as if we have had nine months of news stories in the span of only 60 days. I know I have had to look for the positive stories more than anything to remain hopeful. I have also worked hard to bring the fight for others like me who are suffering in the opioid crisis. During this time I have been dealing with a long run of fibromyalgia flare ups.

I am hurting, tired, and worn out.

This is a unique time of year. The darker, colder months of the year for the US and this leads to more depression. The break from holidays and the excitement of the new year has worn off for most people. It becomes harder to stay focused and to be able to focus on the positives.

It also happens to be my birthday time.

My birthday is in the beginning of March (actual date redacted). Birthdays were always an old day for me. I have been very blessed with a wife who goes and plans a wonderful day for me. She is quite a amazing at it. I quite grateful for all that she does. There can be one thing that holds me back.

My condition.

I have to take time every month and access my pain levels, what I can and cannot do physically, and more. It is difficult to look over the past month or two and see where I have declined, what I have done better, and general self care. In doing so, I have found myself in a rougher spot this time of year than most birthdays.

It is difficult to be in a happy time and be brought down by your illness. You struggle and fight to be happy and appreciative. Inside, you are trying your hardest, and want to shout out that it is all amazing. What can escape your lips is far less than what you want to say.

But still I fight. I know many who fight with me. I know many who fight for us.

I want to give a shout out to those who fight to be happy in the bad times. I am proud of you and I believe the world is a better place with you still in it. I want to give a huge shout out to those who help take care of us. You all go above and beyond with trying to show us how much we are loved and do amazing things. You make life worth living for so many of us. You are amazing and strong.

As always, a big shout out to all those who read and support me. I am humbled and honored that you choose to read what I write. You guys rock and make me feel like a rock star.

I ask all of you to give some love and gratitude to those who support you. Sometimes the best way to help yourself out of a hole is to help others. Showing love and compassion will return it back to you.

Thank you and I love you all.

#hugapony everyone.

The Month of Love

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January was a rough month for me and mine. Between rounds of passing both versions of the flu around the house since December and trying to recover from the holiday break, I am exhausted. We are now in the second month of the year and romantic minds turn to love (along with most retail businesses who have had hearts up since New Years).

Last year I wrote every day for a full month on the importance of self care. I gave many examples of actions to take to show that YOU are special. To show someone very special they are important to you. Yourself. Learn to love and take care of yourself. I am sharing a link to the whole month for everyone. How many of these did you do? I would love to hear from anyone about how these worked for you.

The Self-care month.

Whenever I talk about how special people are and how much they are loved, I always remember Mr. Rogers. One of my very few heroes I look up too. This kind and gentle man showed everyone they were special.  He told the viewer every time on his show that they were special just the way they were. He told them he loved them. He had a genuine care for other humans. The impact of his life was felt by so many, myself included.

Looking around in the world today, we need more people to see the love and share the love. We need to tell more people we love them. We need more people to be told they are special.

I will gladly start.

If you are reading this, I want you to know that I love you. You are in this world and are a part of my life. This may be a one-sided conversation at the moment, but I want you to know that you are special to me. By being here, reading this, you have brought joy to my life. If we have known each other all my life, or we have never met, know that I think you are special, just the way you are.

Love yourself, and know I love you too, and now you have two people on your side. Go out and share that love. Show everyone the world is a better place with you in it.

Hug a plushie my friends.

That Next Big Thing.

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I am going to take a moment and something amazing. My article has struck a chord and resonated with many people. It has now been published at TheMighty.com, three of their Facebook pages, 3 (!) more news pages, and has been put on twitter with a large Spoonie group. I have to share the links cause it is so amazing.
 
 
The word is spreading. It is incredibly humbling to share with so many amazing people. I am honored to be one to speak out. Let us keep the momentum going.
 
I love you all.
 
#hugapony.

The Fibro-Dad

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Being a dad with fibromyalgia is a difficult life. The days are long, lacking energy and being racked with pain. You end up staring at the clock, trying to survive to the next min, hour, anything to the time when you can get relief. However, when you have your kids involved, this adds a new level of pain, shame, and hardships.

When I was diagnosed with fibromyalgia 2 years ago, my daughters were 5 and 7. I was already a full-time dad with tons of responsibilities. I was working full-time, managing flareups, and trying to find time and energy to be a dad. Over the next 2 years, my condition and health worsened. I had to leave two jobs over my medical conditions and ended up a stay-at-home dad. My wonderful wife picked up the slack on the job front, and my daughters started helping me at home.

I would have days were I could not move from the bed. My daughters became super troopers and would ask, “Daddy, are you having a bad pain day?” “Yes baby, I am.” My soul would be crushed at having my daughters help me. I was the dad. I should be the one taking care of them. Over the next year, I would learn to swallow my pride and shame, and learn that I needed to accept help. My girls adjusted and learned to cook, clean, and help me around.

Then my wife got pregnant.

We were overjoyed. I love my daughters and wanted the best for them. Now there would be a new little sister added to the family. I was so happy for a moment. Then it dawned on me that my new daughter would never know a daddy who was not in pain. This new life would never be able to see me at my full best. Would I have the energy to keep up with this new little one? Would I be able to overcome the pain to be there for my wife? How was I going to be able to help?

I was terrified and ashamed.

Throughout the pregnancy, I did my best. I got a part-time job to help with the bills. I helped around the house, pushing myself in ways I thought were the most I could give. Little did I know that more was required of me.

I was only able to hold the job for a few months before pain and fatigue set in and I was unable to continue. Amazing family and friends pitched in support in ways that still make me tear up. I pushed though until the wondrous day of the birth of my new baby girl. I was a proud dad for a third time. We brought this bundle of joy home and she is amazing. She laughs and talks and makes life so fulfilling.

My health chose to find this happy moment and turn things to 11.

Over the past three months, I have had my pain levels spike and maintain those levels for weeks. After two weeks at a time with no relief makes for a serious mental breakdown. I had to find days to which to take heavy meds just to get relief. Caring for a newborn is difficult in the best of times.

Doing it with Fibromyalgia is a nightmare.

There are no breaks in the day at which you can just lay down to try and relax your body. The little restless sleep that never gives rest is gone. You learn to survive on even less energy, more pain, more problems. That survival has made me go back to watching the clock tick by the minutes until my next moment of peace.

I find time to catch a break in these small moments of the baby sleeping. I rest for 5-10 min before another daughter needs me or I try and summon the energy to complete a task of housework. I would not trade my life with my beautiful wife and amazing daughters for anything. It just takes me longer and is harder for me to do the things that need to be done. Sometimes I don’t know how I am able to get all the daily tasks done. I feel that makes me a super hero.

The Fibro-Dad.

#hugapony my friends.

Self care day 27:Inner Plushie

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Being this blog is dedicated to exploring Stuffed Therapy and finding ways to help people, it is fitting to set aside the last post before recap day to my favorite tool.

The Plushie.

The warm, soft stuffed bear, animal, alien or even a pet rock or worry stone can help you through those tough times. I cannot tell you how much my plush has helped me through tough times. Having a small plush on you through out the day can help put your mind at ease.

A totem to help you in the rough times.

I have a friend who attended one of my panels, who heard me speak on the subject. He immediately went out in the convention we were at and got himself a small plush. He was so excited that he got it, I was one of the first people he came and saw. I heard about him talking about it to all his friends. They came up to me and commented on how he was doing better because he had his plush.

I found out that he still has it on his desk even now several months later. It brings a smile to my face to see some good brought back into this world.

Even if it is in a small plush.

Knowing you have something at home that can bring some peace to you. Having the worry stone in your pocket to rub when times are stressful. Seeing the small plush Rainbow Dash on your purse. All of these things can bring you some peace of mind.

All of this self care, wrapped up in a soft, fluffy plush.

Or rock, if the case may be.

#hugaplushie my friends.

It is always a pleasure bring you more day to day posts. I will continue to do so until the end of February. Please make sure to comment, share and follow along as I share some simple things to better your life!

Self care day 26:Treat your body

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Keeping with the self care, there is always a time to “Treat yo self” Parks and Rec style. Body upkeep can be something that we all need. We have covered a lot of post like this in the past month and there is a few more things we can do to help.

Manicures, Pedicures, facials all have one goal. They are there to make you look better. Find a time and Groupon a place to do them (find someplace good). I am a guy and I will admit to having these things done to me. A facial is VERY relaxing (like a massage for the face) and helps those tired eyes. I have no shame in saying that it was an awesome thing to try. Having your nails trimmed and taken care of makes your full body image go up. One of the things I notice when I meet someone and shake their hands is if they have clean nails or not.

It is an easy thing to do for yourself or you can “treat yo self”.

Haircuts/styling is again a wonderful way to improve your mental body image. While there are many salons for women, there has been a rise in specialty barbers for men as well. I have one friend who goes to his barber and he gets a beer every time for his trim. Another friend swears by getting a straight razor shave to trim the beard and having a hot towel on the face.

Find ways and places that can help improve your mental image of yourself. Getting yourself in a place where you are happy with you is so uplifting. Sometimes we all need a pick me up in the physical looks department. Help yourself by little easy changes that can be done.

Self improve the body to help self improve the mind.

#hugapony my friends

It is always a pleasure bring you more day to day posts. I will continue to do so until the end of February. Please make sure to comment, share and follow along as I share some simple things to better your life!

Self care day 25:Zoology

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I will spare my readers the pain of another bad joke with play on words that I did yesterday. I am not sure if I could “bear” the thought of another bad pun. But zoos are fantastic places to be for self care.

Getting some sun, along with some vitamin D, is enjoyable. Planning a day to take a trip to visit some place for fun is not an everyday occurrence, but with can be done with relatively simple ease. And while not everyone has a Disney World or Times Square nearby, we do have zoos in most metropolitan areas.

Theses are no more than a day tip for most of us.

Getting back into nature and seeing wildlife can be awe inspiring. Seeing up close creatures that you normally only see on TV or the small screen of your phone brings them to live in so many ways. TV cannot capture how truly intense a lion’s roar or how adorably cute otters are in person.

Getting out into the fresh air also gives life back to you.

While I know this is not all people, I personally find knowledge fascinating and the study of animals is not an area at which I excel. My daughters can name more animals than I can count at this point and my youngest is caught up in them, she has corrected me a few times on my misinformation. Taking them to the zoo was the natural progression in this post Steve Irwin sadden world.

Seeing awe on their faces was a fantastic thing. I was really enjoying taking them along and going to the different padlocks. Having them get next to the glass with a tiger was enjoyable (for me, they were slightly worried about how thick that glass was). Being able to feed the giraffes was also enjoyable, if somewhat slimy experience.

It was a wonderful break from life.

Breaking up the monotony of the work week/month/year can be key to enjoy life more. You find things or ways to inspire you to do more than just sit at home and watch TV. When you find yourself in this busy world looking a bit lost, take a break. Find a break.

Stop a human doing.

Be a human being.

#hugapony my friends.

It is always a pleasure bring you more day to day posts. I will continue to do so until the end of February. Please make sure to comment, share and follow along as I share some simple things to better your life!

Self care day 24:Culture

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Bacteria is something found in on almost everything in life. We have millions of them in bodies, they are used in science each and every day, and are some the most basic life to study. Growing bacteria is such a simple basic science experiment that we have kits sold to grow these Petri dishes of culture at home.

Though, for this next post you will have to leave home for some culture. *

Finding out about different cultures has been fascinating to me. Seeing the simple differences in thing such as buying milk in a gallon jug or milk in a bag to even more advance thing as another’s language or the fact you never put chopsticks straight up in your fried rice. There is so much to learn about our fellow humans.

Who needs aliens when you have us?

I was homeschooled all my life until college. My mother did a fantastic job teaching us all the basics that myself and my siblings excelled. When it came to history, she let us decide what to study and prepared unit studies to help us along with them. Medieval times? We built castles out of Lego and what was the meaning of why castle stairs are spiraled in a certain way (it is so a defender would be able to swing a sword with their right hand and the center column would not be in their way, and conversely be in the way of an attacker). We did native American studies and learned more about some of my family history and the tribes we had ties. I learned to use chopsticks at a young age of 6 because we learned of China’s great history. So much culture and history to be learned.

So how does this help us.

I look around and see so many flyers and posts about local heritage festivals that go on in our community. I see so much life and passion in them. People celebrating their family ties. Enjoyment and enrichment to be had at every turn. I, myself, attended Oktoberfest with some of my German ancestry coming out. I was out learning more about myself.

Who I was.

Where I came from.

Knowledge is power they say.

Power to help yourself.

Power to take better care of yourself.

#hugapony my friends.

It is always a pleasure bring you more day to day posts. I will continue to do so until the end of February. Please make sure to comment, share and follow along as I share some simple things to better your life!

*This terrible pun/segue is one I could not pass up. The science geek in me is giggling like mad.