What Would You Do If I Sang Out Of Tune?

What Would You Do If I Sang Out Of Tune?

Sing Out Of Tune
 “What would you do if I sang out of tune, would you stand up and walk out on me?” If you have fibromyalgia or some other chronic pain illness you have probably worried about people walking out on you and can relate to the question. The reason why is that anyone with a disabling chronic pain or fatigue illness feels like they are singing out of tune in the story of their life. Doing so also creates a fear of loss, especially losing your friends or family.
The following is a letter you might relate to if you’ve had a chronic pain related illness for any length of time. If nothing else it may be something, you can relate to or something that might be validating to your feelings over the years of invisible pain.  Feel free to use this note if it becomes necessary in your life to express the despair of having a chronic pain or fatigue illness and need to express yourself to those inclined to walk out on you who may not understand being out of tune.
Would You Walk Out On Me?
Singing out of tune is beyond my control when fibromyalgia presses the pause button in my life. The problem is that I have no control of when the pause button is pressed. I know it’s inconvenient to you because it is inconvenient to me. I don’t like the personal disappointment any more than you like being disappointed. I disappoint myself far more than I disappoint you. I live a life of letting myself down.
There are times when I may have made plans only to feel a flare up of fatigue, pain or other related symptoms causing me to cancel those plans. Those flare ups can be so devastating that my body won’t respond to anything or anyone’s selfish encouragement. All I can do is sing out of tune and hope for understanding, understanding that many times is hard to come by.
It’s hard to feel like I have always got to explain why I can’t make plans or keep the plans that have been made. This is especially true when I know that you are suspicious of me and my motives. Often I know that you don’t have a spirit of understanding and yet I try to please you, to go along with you, even when my pause button is being pressed over and over again.
Frequently things get to the point where I decide to withdraw rather than face the music of disappointing you or other friends or family. I can’t make you accept it, I can’t make you change your mind, only you can do that and I hope you will. In the meantime, I need to do my best to take care of myself. I’m the only one who really knows what I need and how to take care of me the way my circumstances require. Sometimes that means I need to reduce the stress in my life which means withdrawing from your life.
I have tried to explain more than once and so the question comes up how much do I really need to keep explaining when you fail to understand me? There comes a time when enough is enough.
I guess I can’t fault you from not grasping it. I still don’t believe all this is happening to me and yet I suffer every day. It’s been going on for years with no hope or no end in sight. Yes the pain and fatigue is real and yes, it is a constant every day of my life and even though it seems unbelievable, it’s real. They call this an invisible illness, but it doesn’t feel invisible to me. I see why you might not get the picture, but I still need to be understood. If you can’t or won’t accept what I’m saying, then maybe I don’t need the baggage of your unbelief and lack of acceptance in my life. Stress is a major contributor to pain and fatigue and I need to do all I can to minimize stress in my life.
A true friend would understand even if is seemed impossible to understand. Do I have a history of lying to you? No, I don’t. So why won’t you believe me? A true friend would. Family members and relatives are an act of birth, being friends is a matter of choice. I can’t stop being your family, but that doesn’t mean we have to be friends. If you choose to leave me behind or choose not to believe me then what is the point of straining over an unfulfilling relationship? You don’t even need to help me, all I want is to be understood and believed. Now you know why I sing out of tune, I just hope you won’t stand up and walk out on me.

All About The First Novel On Fibromyalgia

All About The First Novel On Fibromyalgia

After nearly two years and countless fibro flare ups, I finally finished my first novel. I hope you’ll enjoy it. I hope you find inspiration and validation from reading this novel.
I priced the book to be affordable. Where the trend in eBooks tends to be pricing books higher and higher, I took the opposite approach. For sale as an eBook on Amazon, I’ve priced Parleys Quest at $3.99 and the paperback $9.99. Also, if you’re an AmazonPrime member the cost of the eBook is free. Rather than making money on this venture, I’m looking to reach out to the vast community of chronic pain patients, especially fibrochampions.
Since I’ve been promoting the book, I have been asked many questions about the book, the process of writing it and other questions. I thought I would write an article enumerating these questions and others in a Q&A format.
Q: Why write, let alone write a novel?
A: Many of you reading this article can relate to fibro fog. In addition to fibro fog I have white matter disease which gives me a lot of memory and cognitive problems. During a conversation with a  neuropsychologist, I was educated in ways to improve my memory and cognitive functions. I was told that language arts are known to help rehabilitate memory issues of the brain.
During the ensuing conversation I specifically asked if writing was considered a language art and suitable for rehabilitation. Her answer was yes. Anything within the umbrella of writing, from keeping a daily journal to writing a book. Just so long as it is done every day. I was further cautioned that this is a slow process. Unlike physical rehabilitation, this type of therapy would take long months and years to effect an improvement.
I’ve had a life long interest in writing and had been blogging inconsistently for years. I decided I was going to give writing therapy a try. Initially I was going to do some nonfiction writing, but with some encouragement from a neighbor I decided to write creatively and eventually write a novel.
First, I had to study novel and creative writing, which was followed by a lot bad writing attempts on my part. I finally started the novel that included chronic pain and fibromyalgia. I wrote almost half of a novel when I decided that it was a good exercise, but otherwise garbage. I started over and after one hundred and fifty words realized that I was close, but still didn’t have the story I really wanted. Oops, I did it again. I started over. I finally got the story right.
PQ_front_cover_kdp_2

The very first novel written about fibromyalgia by someone with fibromyalgia

Q: So, did writing help with your memory and cognitive issues?
A: Not much the first eighteen months. I had a flash of improvement every once in a while. If I wasn’t vested in getting the story done, I might have quit trying. I was told this wasn’t a quick fix to my memory and cognitive issues.

As time went on I started to really notice some improvement. It became obvious that my memory was improving. Then, as I persevered, I continued to notice improvement, eventually even in some cognitive issues. I am doing better with passwords and many lost memories have come back to me. It has been nice to remember fond memories. It was like living them all over again. I still have a long way to go, but I am seeing steady improvement.
Q: Why write on the topic of fibromyalgia?
A:  Having had fibromyalgia for so long and knowing how frustrating it is for people to take the illness seriously, I wanted to bring fibro into the mainstream as much as I would be able to by writing a novel where chronic pain and fibromyalgia were a big issue. It’s validating to have people take you seriously when you’re afflicted with fibro and other types of chronic pain. I wanted to entertain, engage and validate those with chronic fatigue, fibromyalgia and chronic pain.
As the story started to take off and the characters got developed I realized that rather than having health issues as a side story, it was the story. There are other characters with other types of chronic pain to compare and contrast with fibro as well.
Q: What is the book about?
A:  Parley is married to his college sweetheart Miranda. Andy is married to the Marine Corp. Watch what happens when Parley and Andy, both heroes in their own right, suffer insurmountable physical setbacks and adversity? Watch as the quest that Parley is forced to take leads him to cross paths with Gunnery Sargent Andy Zimmerman. Can they help each other when they appear unable to help themselves? Can they each make sense of the life that is forced upon them? Will they have the strength to fight back? Does their new quest lead them to hope or more despair? Three Christians, two writers, one warrior. They only have a few things in common, one of which is chronic health problems and a mysterious pain. Can they help each other out or do their life altering trials keep them away from benefitting from each others fellowship? Find out how Parley’s Quest resolves these questions. It’s a life altering story that will inspire you and make you grateful for Christian teachings of love, hope and faith.
Q: Do you plan on a sequel?
A: I do, Fibromyalgia willing. In spite of fibro, I manage to write the first one, so I am fairly confident that I’ll write a sequel. The story of Parley is far from over.
Q: What about the inspirational quotes at the beginning of each chapter?
A: They were significant quotes I experienced while writing the book and I thought they would be nice to share. The ones written by CallahanWriter are the quotes I wrote myself while writing the book and some are even part of the novel.
Q: There’s a lot of talk about pain in the novel, not just about fibromyalgia. Why?
A: That’s a good observation. The intent is to compare and contrast the pain associated with fibromyalgia to many other types of pain.
Q: How much of your own life is in the story?
A: Parley and the other characters are very different from me and that was on purpose. The parts of me that are in the book are based on personal experiences with the pain and symptoms of fibromyalgia. I hope that’s what makes this a good book. After all, it is a novel about fibromyalgia written by someone who actually has it and can write about it first hand.

Can The Loss From Chronic Pain Be Turned To Gain

Can The Loss From Chronic Pain Be Turned To Gain

If you have had any of the chronic pain illnesses for any length of time, you have experienced loss of one type or another. Whether that loss is great or small it still hurts, leaving you feeling  empty, demoralized, unfulfilled and angry. A sense of loss can compound the mental and emotional anguish associated with fibromyalgia, chronic fatigue or any other type of never-ending pain.

 

PQ_BookCover_Txt_Enlarged1When dealing with these sicknesses over expanded periods of time, small victories can make a substantial difference in ones overall well being and ability to cope. Therefore, it can be worth pursuing activities that can help you achieve some victories which can help the time wasted on the sick bed seem worthwhile. Achieving small victories can, over time help chip away at the emotional drain associated with chronic illness.
A case in point is that after spending thirty-two years with fibromyalgia, twelve years diagnosed  I got into writing. Making a long story short, I recently finished my first novel. It is now published and available on Amazon.
I also found out that writing, like any other language arts, helps stimulate the brain acting like physical therapy for the brain. Since engaging in creative writing for three years I have enjoyed both the beginning benefits of my brain working better and I can remember more passwords than before. I have experienced small improvements with various memory issues. I also have something meaningful I can do during the long hours of day in and day out suffering from fibromyalgia and its many symptoms.
So if you don’t feel like writing a novel or some other type of book, then keep a journal every day or write letters. There are many ways to employ writing as a therapeutic activity for your chronic pain, fatigue or fibromyalgia. Remember that it’s not just writing that will be beneficial, any type of language arts can have the same effect.
If you’re interested and I hope you are, you can get a copy of my novel Parleys Quest from Amazon. It happens to be a work of fiction where the protagonist deals with chronic pain, fatigue and fibromyalgia as he trudges his way through the novel.
Troy Wagstaff

The First Novel About Fibromyalgia

The First Novel About Fibromyalgia

I’m back! I’m sorry for the long delay in keeping this blog up. For nearly two years I have been working on a novel. I got to a point where trying to keep the blog going and finishing the book was too much for me given the fact that I suffer from fibromyalgia. I will tell you all much more about my novel in the coming weeks. I’ll say this much.  The novel is a story where the protagonist is eventually diagnosed with fibro. It is called Parleys Quest and can be purchased from Parleys Quest.
PQ_front_cover_kdp_2
This work of fiction is the first novel that deals specifically with fibromyalgia. There have been novels, various stories and even some movies that deal with chronic pain of one type or another, but to the best of my knowledge, until Parleys Quest, there has not been any stories dealing with the challenges of fibromyalgia. This is significant to the millions of people worldwide diagnosed with fibromyalgia.
I’m glad to be back and I will now start keeping the blog active.

Fibromyalgia Awareness Memes

Fibromyalgia Awareness Memes

Please feel free to use these memes in promoting fibromyalgia awareness.

fibro-emotions


 

fibro_awareness_subart


 

fibro_subway_1


 

fibro_unpredictable

Merry Christmas Christ Centered Christmas Memes

Merry Christmas

Christ Centered Christmas Memes

Merry Christmas 2016,

Please enjoy and feel free to use these Christ centered Christmas Memes to celebrate this wonderful holiday.


christmas-tree-meme.jpg


christmas_around_the_world2.jpg

Put Christ Back Into Christmas

3

christmas_meme_9.jpg


4

christmas_meme4.jpg


5

christmas_meme20


6

christmas_meme_14


7

christmas_meme1


8

christmas_meme2


9

christmas_meme5


10

christmas_meme6


11

SONY DSC


12

christmas_meme11_world_wide.jpg


13

christmas_meme12


14

christmas_meme13


15

christmas_meme17


16

christmas_meme19


17

irish_christmas_meme3

 


18

christmas_meme25


19

christmas_meme23.jpg


20

christmas_meme27.jpg

 


21

christmas_memes15.jpg


22

christmas_quote_1


23

merry_christmas_meme2.jpg


24
Christmas Eve

christmas_meme29.jpg


Merry Christmas
Christmas Day
25

christmas_meme24.jpg

Unintended Consequences Of Chronic Pain And Fibromyalgia

Unintended Consequences Of Chronic Pain And Fibromyalgia

 

I’m an adult with an ear ache. Well, actually I’m a man bordering on old age and it’s not an ear ache, but it’s earaches, one in each ear. My throat starts to hurt along with a three day headache that will not go away so I go to the doctor. I’m not proud, in fact, I’m quick to go to the doctor when it comes to relieving  any type of pain.
With fibromyalgia I am sick of the pain. If I can relieve some type of minor or regional pain, I’ll do what I can. So the doctor agrees, I am sick. I get ten days worth of antibiotics. I get some cough syrup, cough syrup without narcotics. I already have a prescription for that. Yeah. I’ve been through many a sinus infection and many an upper respiratory illnesses, both viral and bacterial. I know that if I respond favorably within two to three days, it’s likely bacterial and I’m on track. Otherwise, it’s viral and I have to wait it out. It’s sad that I know this much.
I’m taking my medication regularly for three or four days and I’m responding well. Then all of the sudden I seem to be backsliding. Not good. So the question is why? I don’t want to be sick. I don’t want to expose my grandchildren to whatever I have. Being sick on top of chronic pain and fibromyalgia is just miserable. It’s worse than miserable, but unless you have a chronic illness or a chronic pain, you likely wouldn’t understand. So then, the question is why am I backsliding. Why are my symptoms getting worse and not better like they were a few days ago?
unintended_consequences_of_fibro
It takes longer to figure out since my memory is foggy and my deductive reasoning skills are reduced by fibro fog but I do figure it out. I take too much medicine. Too many pills. I guess that’s a matter of opinion. I don’t technically take too many pills because every medicine I take is prescribed, even the Calcium, Vitamin C and other supplements.
You see, the problem is that my memory, motor skills are kicking in when I take my morning medicine and my night time medicine. I look at the bottles, sometimes skipping the labels because after six, eight or twelve years of taking the same medicine daily, I know what the bottle looks like. I know what the pill looks like. I have made several phone calls over the years to the pharmacy to ask why the shape or color of the pills in a particular pill bottle are different. They look it up and say that for that particular bottle, it came from a different manufacturer this one time or that they changed the shape of the tablet or the pill is a different color because it is now generic.
I think to myself, when was the last time I took my antibiotics? Now that I’m thinking about it, I start to wonder when I last took that two color capsule. I go through my pills, sorting them by morning and night time schedules. There’s a slightly translucent white pill bottle remaining along with an old bottle of Meclizine that I need to dispose of. The white bottle turns out to be my antibiotic. Crap! I realize that I have been on autopilot for so long that I passed over that antibiotic bottle the last few days. I haven’t been taking my new pill.
What’s done is done and I need to move on. I have changed the way I manage that pill. I have been taking it properly now and the symptoms are again improving. I now place the antibiotic next to my pain medicine that I take throughout the day. That reminds me to take it morning and evening.
After dwelling on this strange circumstance, I realize that among the many unintended consequences of medicating and treating fibromyalgia and chronic pain is that sometimes other temporary medicines get lost in the shuffle making it harder to deal with what most people would consider normal medical issues like the occasional sinus infection or ear aches or whatever. After twelve official years diagnosed with fibromyalgia I am still learning about how to live with this chaotic illness. Yeah.
%d bloggers like this: