What Would You Do If I Sang Out Of Tune?

Posted on June 5, 2017 by Troy Wagstaff

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.

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All About The First Novel On Fibromyalgia

Posted on May 24, 2017 by Troy Wagstaff

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.

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Can The Loss From Chronic Pain Be Turned To Gain

Posted on May 22, 2017 by Troy Wagstaff

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

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Fibromyalgia Awareness Memes

Posted on January 10, 2017 by Troy Wagstaff

Fibromyalgia Awareness Memes

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

fibro-emotions

 

fibro_awareness_subart

 

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Princes Purple Pain: The Controversy of Drugs and Chronic Pain

Posted on July 8, 2016 by Troy Wagstaff

Princes Purple Pain: The Controversy of Drugs and Chronic Pain

The Side Effects Of Invisible Chronic Pain Illness

What comes first, the  chicken or the egg? While the world mourns the passing of the great singer and songwriter Prince, many have tried to use his name as the face of chronic pain by declaring that it was chronic pain that killed him. Technically, is was drug overdose that killed Prince. Thus, herein lies the controversy. He had chronic pain and, for whatever reason, he didn’t get proper medical care. Prince, like countless others, managed his chronic pain by himself.
When it comes to managing chronic pain, countless people go without proper medical care and medicate themselves.  This creates a public health crisis and puts peoples lives in jeopardy. Since chronic pain is one of those invisible illnesses, it often get’s overlooked by the medical establishment and the public. For that reason, many people aware of the problems of chronic pain are trying to use Prince’s sad death to draw the public eye on a very serious problem, chronic pain.
There are many people who shrug off the death of Prince as a typical drug related celebrity death. In this case, they are wrong. Prince did have chronic pain. It is said by those who knew Prince that he had hip pain that warranted surgery, the surgery was unsuccessful and made his pain worse. I don’t know why he was self medicating and so I won’t judge his use of narcotics to manage his pain.
I have chronic pain in the name of fibromyalgia and arthritis both. Narcotics are a part of my medical treatment plan under a competent medical doctor. I know that narcotics help manage pain. One of my biggest pain points are both hips. I can relate to the pain felt by Prince.
Robin Williams
When the world lost Robin Williams to suicide, countless millions were exposed to the sad reality of mental health issues. While his passing was tragic for the world, we all learned more about the reality of mental health issues. That alone was a tribute to Robin Williams.
Prince
As the world mourns the loss of a great talent like Prince, let us use this time to learn much more about the sad reality of chronic pain as our tribute to him. If some good can come from his passing, let it be in the form of increased awareness and understanding of chronic pain.
princes_purple_rain
If people understand the reality of chronic pain and its legitimacy as a medical issue they may be more willing to support those with chronic pain and take the cloak of invisibility away from this medical issue.
Some of the many behaviors that could end the life of chronic pain patients are suicide and self medication. Self medication will almost certainly lead to addiction and associated with addiction is criminal behavior and the very real possibility of overdosing.
Because so many in society, including many medical doctors don’t understand chronic pain and how to manage it they won’t treat it. Ignoring it leads desperate people to self medicate. When people turn to illegal drugs and alcohol it becomes society’s problem with impaired driving and an increase in the crime rate.
Chronic pain is invisible like the wind. You can’t see the wind, but you can feel it. Most people don’t care about the wind until they see or experience the devastation that can come from the wind. In this case, we see the devastation of chronic pain through the death of Prince.
Robin Williams hid his mental health issues behind a big smile. Prince hid his chronic pain behind his active lifestyle that was made possible by the use of narcotics. If he had his medicine managed by a competent and intelligent medical doctor, he may still be with us with more music to write.
So let us become more aware of chronic pain as a society. Let’s insist that our medical community takes invisible chronic pain more serious. Insist that medical schools educate our health care professionals better, push to find better treatments for the many chronic pain conditions.  Let’s tell the government to leave health care management to the doctors and not tie their hands with worthless and needless regulations.
While Prince’s death is tragic for the world, let us honor him, like the world honored Robin Williams. When Robin William’s passed away we learned more about the devastating effects of mental health. With Prince’s passing, let’s honor his memory by learning more about the seriousness and danger of chronic pain. Perhaps, by doing so, we can prevent needless overdoses and suicides. Hopefully, if we look past Princes overdose, we can look to what motivated Prince to over medicate and understand the devastating effects of chronic pain that affect millions of people, we can avoid other suicides of people that no one knows about but are no less important.
Troy Wagstaff

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Do People Really Live this Early in the Morning?

Posted on April 23, 2016 by Troy Wagstaff

Do People Really Live this Early in the Morning?

Insomnia is a big problem for many of us who have chronic fatigue, fibromyalgia or chronic pain. For many different reasons we have trouble sleeping. I don’t know about you champions, but before Fibro was officially diagnosed I was an early to bed early to rise kind of guy. Now that I have insomnia, I go to bed late and get up late, most of the time.

When life demands that I wake up early, about fifty percent of the time I can take my MEDs and I can get to bed in time to accommodate an early rise. This morning was one of those days when I got decent sleep in spite four or five interruptions.

how_fibro_changed_me_1I woke up at 8:15 a.m. to take my daughter to work at 9:00 a.m. I had enough time to take my pain MEDs and to rest my back on my heating pad for at least a half hour.

We left at 8:48 a.m. We saw a perky thirty-something woman jogging and wondered how someone could be out so early and be so perky and be jogging all at the same time. My daughter has developed bad sleeping habits along with me and my wife as she grew up. So this is early for her.

We live in a small town and on main street, the main thorough-fare, there were tons of cars on both sides of the road. That’s awfully early for this many people to be out and driving around on a Saturday. It was now 8:52 a.m.

As Kate and I were talking, on the way to the salon, I was reminiscing about the days when I used to go to work as someone else’s employee. I would be at my desk and working by eight in the morning. I realized I would wake up about an hour early to be ready for work. When I started a longer commute I woke up another hour and a half earlier to get ready to get to the bus or train. The last time I did that was about February 2002. I worked for myself for several years before my official diagnosis of fibromyalgia and then later becoming disabled.

As I reflected on that memory on my way home, by now it was 9:04 a.m., I realized how much fibromyalgia has affected my life. All these years later, eight in the morning is sleeping time. When millions of people are hard at work, I am sleeping or just waking up. Sadly, this is just another example of how fibro has, without my consent, changed the way I am forced to live my life.

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Inspirational Quotes To Validate Those With Fibromyalgia

Posted on April 13, 2016 by Troy Wagstaff

Inspirational Quotes To Validate Those With Fibromyalgia, Chronic Pain and Chronic Fatigue.

 

These memes that promote fibro awareness and support for Chronic pain and chronic fatigue are just some of the countless memes on that subject located on a FaceBook group called FibroChampionsBlog at https://www.facebook.com/groups/FibroChampionsBlog

 

These memes are designed to validate those who suffer from the chronic nature of fibromyalgia, chronic pain, chronic fatigue and any other chronic illnesses the have pain or fatigue as a major symptom.

 

dont_be_loney_chronicpain.jpg

 

chronic_pain_quote_hope

 

 

 

 

fbc_champion_who_is

 

fbc_does_what_yhey_can

 

 

 

FibroChampions means anyone with chronic fatigue, chronic pain or any other chronic illness where chronic fatigue or pain is part of the symptomology. NEVER GIVE UP, NEVER SURRENDER!

 

 

 

fibro_champ_miss_your_own_self

 

dont_be_lonely_fibro

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FibroChampionsBlog

Posted on March 26, 2016 by Troy Wagstaff

Celebrating Fibromyalgia Champions

This post is to inform you of a Facebook Group called FibrochampionsBlog. It is designed to validate the champions out there who struggle with Fibromyalgia, chronic pain, chronic fatigue and other invisible chronic illnesses. Come here for comfort, peace and understanding.

fcb_promo_1

This Facebook group about fibromyalgia consist of people who have fibro, fatigue or chronic pain who will help validate your struggles.

fcb_choose_hope

But mainly, the FibrochampionsBlog features motivational, validational and inspirational memes.

 

fibro_never_give_up

Many of these inspirational memes will eventually make it on to this blog but the FibroChampionsBlog provides daily inspirational posting.

fibrochampionsblog_8.jpg

 

fibro_fog1

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A Day In The Life Of Chronic Fatigue

Posted on March 26, 2016 by Troy Wagstaff

A Day In The Life Of Chronic Fatigue

A Day In The Life Of Chronic Fatigue

Along with Fibromyalgia, I have Chronic Fatigue. I was reminded about the misery of Chronic Fatigue this past seventeen days. Normally, with my current medication, both for Chronic Fatigue and Insomnia and caffeine pills, I keep my fatigue at a manageable level.

I went to the doctor seventeen days ago and needed a refill for several pills. Some prescriptions were sent electronically and some were handwritten. We talked about the Nuvigil which is what I take in the morning to help me be alert. Sometimes I augment the Nuvigil with some caffeine pills. The doctor forgot to send in my Nuvigil. After the dust had settled, I had all my prescriptions filled, or so I thought. I had two Nuvigil pills left. In a couple of days there was no more Nuvigil and I realized that Nuvigil prescription had not been filled so I called the pharmacy. They’ve been known to mess up on prescriptions. They had no record of the prescription so I called the doctor’s office, they faxed an order over to the pharmacy.

Later that day, I called the pharmacy and they didn’t have it. By then it was too late to call the doctor’s office. Making a long story short, I went through this for several days. I was getting more fatigued and sleepy during the day. My head was clouding up. I was able to do a few things each day, but then by afternoon I started falling asleep on and off for the rest of the day. Add a cloudy tired mind to fibro fog and it’s a real treat. NOT.

chronic_fatigue_nuvigilI had the doctor fax the prescription in a few times and then I had them electronically send it in a few times. Every time I called the pharmacy they didn’t have any record of it. I asked the pharmacy to call and fax the doctor.

This all went on for about a week I thought, maybe ten days. I finally physically went to the doctor’s office to get a physical prescription that I would hand deliver to the pharmacy.

Between the receptionist and the nurse the wires got crossed and the nurse sent it in electronically. While I had access to the nurse, I called the pharmacy and verified by the pharmacist they had received the order. Halelua, the pharmacy had the prescription for Nuvigil in their system! It was filled by the time I got there.

Everyone who has chronic pain, fatigue or fibromyalgia has more than their share of medicine stories, this is nothing new. What I learned about all of this was that after two days of Nuvigil in my system I could see a radical difference in my head. I went from fatigue in my mind and very sleepy too much less sleepy and much less fatigued. It is imperative that we manage out medicine as patients with chronic illnesses.

Also, if I hadn’t had such a cloudy head from the chronic fatigue, I would likely have had this issue resolved much sooner. I thought this whole story took about a week or ten days, but as I sat down to write this post I looked up when my doctor’s anointment was and it turns out that this whole scenario was seventeen days, not ten days. Time seems to slowly float by unaware when you’re in the throes of fatigue or pain.

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Three Good Days Is All You Get

Posted on March 19, 2016 by Troy Wagstaff

Three Good Days Is All You Get

 

This week, three decent days of pain management is all I got. My average pain is around a six to seven. The last three days have been around a four or five. Mostly a four. Of course nothing ever goes completely right. I have had huge bouts of chronic fatigue but the pain has been manageable.

I am frustrated. On the rare chance I get to a point where the pain is tolerable, I get greedy and I want several more days pain-free.

fibrochampionsblog_frustration_no_morethan3good_daysI am also frustrated because when I am having one of those rare episodes of good pain management I get nervous for fear that the pain will blow up, out of no where and it makes me leery as to what I try to do. I’ll take the pain-free days even though they wont last and even though I don’t always takes advantage of a pain free day.

They never include frustration as a symptom of fibromyalgia. But the frustration is as real as the pain itself.

Having said all that, I am grateful for three decently managed semi pain-0free days this past week.

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