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.
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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

Fibromyalgia Awareness Memes

Fibromyalgia Awareness Memes

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

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Princes Purple Pain: The Controversy of Drugs and Chronic Pain

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.
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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.
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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

Fibromyalgia Is Like A Box Of Chocolates

Fibromyalgia Is Like A Box Of Chocolates

Borrowing a famous line from the greatest movie Forrest Gump, “my momma always said, life was like a box of chocolate, you never know what you’re going to get.”
If you have fibromyalgia, you know that like a box of chocolate, you never know with fibromyalgia what you’re going to get. Of course, we all know that with fibromyalgia comes chronic widespread pain, we know that it is a Central Nervous System disorder and we know that at the present time, there is no known cure. But that is where the certainties of fibromyalgia stop.
The symptoms of fibromyalgia are vast and by some counts include over seventy symptoms. If you are recently diagnosed with fibromyalgia you are in for a long ride to discover what other symptoms you’re going to have. Once you find a way to manage the chronic pain you might notice, many more issues that are common with fibro like insomnia, fibro fog and many more.
box_of_chocolates
With a nice big box of assorted chocolates you get a nice assortment to experience. At least you have a choice, do I buy this box of chocolates or not? You don’t have a choice with Fibromyalgia.
I made my own box of assorted chocolate to illustrate a point. That’s the beauty of assorted chocolates now days. They have web sites where you can customize what you want inn a box of chocolates, but there is no choice which fibro symptoms you get. You can’t customize your symptoms on a web site. Even if you could, what would you want to select?
Whereas with a box of chocolate, you might get a Milk Chocolate Almond, with fibro you might get depressed. You could get a Milk Butter Cream, or with fibro you might get fibro fog. If you’re lucky you could get a Milk Walnut but with fibromyalgia you could get fatigue. The Milk Pecan Bud is nice, but with your box of fibromyalgia you get may get Fibrocystic breasts.
For me no box of assorted chocolates would be complete without some dark chocolate like a Dark Almond. With fibromyalgia you might get chronic hip pain, I hate that one, probably the most.  Dark Walnut is nice, but Foot Stiffness or Foot Pain is terrible. I love Dark Peanut but I hate the headaches and sleep disorders. I like Raspberry Truffles, they’re very rich, but one in a box is good.  Muscle  Twitches and Spasms are bad and I hate them both.
What’s ironic using this interesting comparison about fibromyalgia and boxes of assorted chocolates is that another symptom of fibromyalgia is cravings for carbohydrates and chocolate.
This article, I hope amuses you just a little, maybe if I am lucky the corners of your lips turned up just a bit. But it’s hard to be amused my fibromyalgia and its scores of additional symptoms as if the chronic widespread pain is not enough. For the most complete list of symptoms that I know about, go to Fibro Symptoms.
Troy Wagstaff

Do People Really Live this Early in the Morning?

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.

Inspirational Quotes To Validate Those With Fibromyalgia

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.

 

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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!

 

 


 

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A Day In The Life Of Chronic Fatigue

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.

Three Good Days Is All You Get

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.

Fibromyalgia – Critical Thinking

Fibromyalgia And Critical Thinking

There is never any shortage of articles or advertisements claiming to help treat fibromyalgia or cure fibromyalgia. Every one of them leads directly or indirectly to money. No one wants to give that information or product away for free.

When you are in chronic pain all the time, day after day, week after week, month after month, year after year, you make for easy prey for some husker that will sell you something or teach you something for a modest fee, of course.

fibro_critical_thinkingIt can become expensive and costly to believe every claim or advertisement you hear about fibromyalgia.

There are people who aren’t selling anything, just passing on information. I do that all the time. I am not selling anything from my blog posts. I do pass along helpful information. Regardless if it is me or someone wanting to sell you something, it is important that even though it sounds like a wonderful thing you need to think it through. Use critical thinking.

For example, whenever I think of anyone either sharing information on nutrition to cure fibromyalgia or selling a book about nutrition that will stop fibromyalgia in its tracks I consider the fact that the latest information over that last three or four years is that fibromyalgia is not an autoimmune illness, it is a neurological illness. If there are certain types of food with certain types of herbs or trace elements, chances are, you can get them in a supplement form and not have to buy a big expensive book to see if it works. Chances are it will never work. If those elements or herbs really cure fibromyalgia, chances are the pharmaceuticals would synthesize it and make it available to everyone.

Don’t get me wrong, I am all for eating as healthy as you can afford. Good nutrition is the secret to overall wellness. If you are disabled and on a strict limited income, you have probably noticed that produce and other healthy food are expensive.

When you are involved in critical thinking you never take anything at face value. You look into it and compare the assertions to your own research. You don’t accept what’s being presented to you without thinking and researching the idea. Don’t read one article an assume it is right for you. Dig in a little and see if after your research and critical thinking, is this right for me?

Troy Wagstaff

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