FiBroMyAlgia
By,
L. S. Fayne
Copyright 2012 L. S. Fayne
Publication by Fayne Artists
ISBN-13: 978-1-60903-029-2
Smashwords Edition
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Some historic events may be written into a fantasy forum. The author reserves the rights, Freedom of Speech, to express her views on these events. Any resemblance to persons living or dead in fictional works are purely coincidental unless stated otherwise. Names have sometimes been changed in non-fiction works to maintain privacy.
Table of Contents
Finding Solutions for Living - Year 2011
Books of Fiction by L. S. Fayne
19th Century Series: The O’Byrne Daughters
Budding Magic: Book One
It’s Just Magic!: Book Two
Gathering of the Raven: Book Three
20th Century Series: Druantia’s Children
Christmas in the House of O’Byrne: Book One
Druantia’s Braids: Book Two
There Can’t Be Shadows Without Light: Book Three
Books of Non-Fiction by L. S. Fayne
FiBroMyAlgia Chatter
Dedication
To those who persevere, even though in pain, and bring life, warmth, and joy to the lives of those around you, thank you. You are an inspiration to us all.
Appreciation
To my husband, for loving me and supporting me even when I’m not at my best. Thank you for making life good.
Introduction
I have fibromyalgia. This is my story. It was finally diagnosed as fibromyalgia in 2008. Seven years after the surgery which had caused it. There are self help books out there which tell you how to be free of the condition. Maybe they work. I won’t judge. If a book even helps one person that would be wonderful. This book is about living a full life even with fibromyalgia. Good job to those who have beat it! I fear though that you are a lucky few.
I already know that this book is going to cause haters and lovers—which is actually better than being ignored. It seems that in today’s circumstances there is an awful lot of anger. It doesn’t even seem to pertain to any particular subject. The anger just seems to spew out on that which is vulnerable.
Just so you know, I am an independent writer. No one owns this work except for myself. I have total control of it and its content. I am not writing this for money. In fact, it’s a rather sad laugh that people think writing a book means instant prosperity. It’s a lot of hard work, feels a bit naked, and can be expensive on many levels.
Even thought I talk about my other books, this is not a plug by yet another indie author to sell her books. It is not! It is no different for us to talk about our books than a gardener to talk about their flowers, or a NASCAR racer to talk about cars and tracks. It’s just in us. It’s what we like.
This book is written as honestly as I know how. It’s been rather confusing for me while I’ve been writing this, because every day feels much like the day before, and yet so very different. The little things matter. A diagnosis of fibromyalgia is elusive and hard to capture.
I am hoping that writing this will help someone with fibromyalgia figure out how to get out of bed and start living again. I’m also hoping those who are around someone with fibromyalgia will find more enlightenment about dealing with this phenomena. It’s more than just understanding the problem. It’s about understanding the problem, and being aware of its affects on the person in that moment.
Sometimes, it’s very hard to get up and enjoy life. What is harder though, is to regain your freedom once it has been taken away from you. Fibromyalgia can steal your freedom. It can steal away your life. People become bedridden from this ailment. It’s not about sucking it up and getting on with it.
I was reminded—just yesterday in fact—of how we go around in life, contained in our little boxed worlds, seemingly unaware of those around us. We don’t really pay attention to them. We definitely do not see the details of their lives.
There was something written into facebook about having all those on welfare, doing mandatory drug testing. Although, I wouldn’t have jumped on that particular band wagon. Not too long ago, I wouldn’t have really thought much about it, either. I would have simply read it, maybe agreed or not agreed—depending on my mood—and moved on to the next subject.
This time, I actually paused to think about it. I thought about my newly acquired friend from the East coast. She suffers from Trigeminal Neuralgia. A very severe facial nerve disorder. In simple words, her face hurts—a lot. Sometimes, she can do nothing else except to cry. The pain is so, so bad.
Using cannabis could help with that pain. Not very many drugs do. If she was to test positive for using cannabis, she would lose her financial assistance. Where would she be then? She can’t work! So because of fear, she doesn’t use the one medication which could ease her pain—help her to have a life again. It’s so senseless and petty of her state, and the feds, in making its use illegal.
Too many times we just flitter from one subject to the next. Not thinking about how something will really affect our fellow person. We need to stop. We need to realize that nothing is ever simple, and to take a good look at what we are doing. Maybe—novel idea here—even let those affected make the decisions.
It’s easy to jump at ideas which do not directly affect us. It’s easy to be opinionated about those things which make no difference in our lives. We tend to slow down only when something can actually make some type of impact on us. We should slow down more often.
I used to be irritated by those who had a major life drama, and then suddenly become the world’s advocate about whatever that was. Now, I’m a little embarrassed by my insensitivity. Life has a way of humbling us. We are supposed to react to it.
I’ve learned to respect those who step out and demand change. It was not an easy road for them to have taken—no matter why they chose to do it. With this writing, I’m not stepping out and shouting about change. I’m simply hoping to bring about an awareness—and a compassion. I hope to help someone.
***
Fibromyalgia is sort of a buzz diagnosis right now. Very few people understand just how crippling it can be. There will be things I miss telling, either I forgot about it, or thankfully, I didn’t get to experience that particular derivative. There are a lot of combinations of symptoms with fibromyalgia. That is why it is so hard to diagnose.
Sometimes, I will talk about myself, but sometimes I’m addressing you, the reader. When I say you. I’m really meaning the person who needs to hear what I’m saying. If he or she isn’t you—just move along.
Fibromyalgia, it’s a bucket they put us in when they do all the tests, and can’t find anything else wrong. For me, they poked and prodded, scanned and took samples. Performed a colonoscopy and took a biopsy. They even looked at my brain a few times. At least, they finally started believing that it wasn’t just in my head.
I find that the only way I can write about myself is by chatter. Writing about myself makes me feel weird—suddenly shy. So, I will just drift, and let the subjects introduce themselves. This may get a little non-linear at times, but then this book isn’t a reference. For a referenced document, see a doctor.
A peer informed me once that the world did not revolve around me. I was rather shocked at him for saying this since I never thought it had. Now, I’ve changed my mind. From this perspective, from these shoes, it has to. I can only see from where I am. So here we go—my theories and ideas concerning FiBroMyAlgia.
Everyone is born into the world with pain, and pain accompanies us through the rest of our lives. It is a warning for us to protect our fragile, mortal flesh. For some of us though, our warnings are without purpose. We can’t use them to protect anything. We can’t answer that call. There are many physical conditions which are similar to fibromyalgia, and many of the people who suffer from them, face the same problems as described in this book. I am not comparing pain. I am not dismissing their pain. Pain is real, and it affects us all.
I will try to be very candid. I really want people to understand just what people like me go through every day. It is not only personal to those affected, but also to those who live with a person with fibromyalgia. We will see if I end up editing out all the private things leaving the bare bones. I’ve done that before, but this time. I am challenging myself to leave things alone.
Just so you know, I am a woman, married, turned fifty-one, and of course, look young for my years (we all think that, but for me it’s true). No one else lives with us, just my husband and I—and our cats. This is important because the more people who live in a household, the more stressful and complex life becomes, especially if there are children. Stress affects fibromyalgia, and fibromyalgia affects everyone. It’s all fun and games until you crash and burn.
So, what are the symptoms? Pain. Pain and noise. The noise of all the senses colliding with each other. I call it Fibro-Chatter.
They’ve identified eighteen tender points on the body. There is a set of nine on the right, and another set of nine on the left. These points or spots are always exactly parallel to each other across the body. There are a lot of diagrams on the net which illustrate these. These are not the only tender spots on the body. These are only the points which are so common that they use them to identify fibromyalgia.
These spots are only about the size of a finger print. If the spot is lightly being pressed, it will feel to that person as if it is being pressed really hard to the point of pain. It is easy to miss this tiny spot when searching around, and feel no pain at all.
For me, the spots on my back and neck are not as sensitive. Probably, because they get touched and handled more often than the others. When the neurologist pressed the spots on my back right up above my buttocks, I about jumped to the moon. Oh my god it hurt! Although, the doctoring community holds these points in such high regard, they are not the only types of pain linked with fibromyalgia.
Every person has a different batch of symptoms. That is one reason why it is so hard to diagnose. The other problem is that the symptoms change hourly—minutely. My main symptom is all over body pain. My nerves are oversensitive. My muscles, even my hair hurts. At least it feels like it—don’t argue.
Sometimes the pain moves around. My left shoulder hurts. No, it’s my right leg. No, wait a minute, now it’s in my ear. This type of pain feels like poking. It could last a few minutes—or hours. It totally confounds the doctors when you try to explain it.
There is also a type of pain which feels as if something is wrong on the very top of the muscle. It’s not exactly just under the skin, nor is it deep within the muscle. This is another one of those things which is near impossible to explain. Cold and/or air blowing on a part of the body can create this kind of pain. My arm could start hurting just because I’m breathing on it as I lay in bed. I don’t notice it at first, but then realize that my arm hurts. The pain will actually go away if I stop breathing on that spot. That sounds simple enough, but when your sleeping, it’s hard to stop breathing on yourself. Air conditioners can also bring on this kind of pain.
This same pain can be created through touch. An example of this is my arm could be fine, but then someone will touch lightly on my forearm, and it will start getting intense. At first it isn’t really noticeable, but the sensation will grow stronger until if the touch isn’t moved, it will hurt. This type of pain is very intrusive with intimacy.
I also have R.L.S. (Restless Leg Syndrome). The RLS can also be in my arms. Arms or legs, it can affect me when I’m sleeping, or just sitting in a chair. The muscles refuse to relax. It can go on for hours. It can hurt, or it can create an anxious feel. It can also feel as if something is crawling on the skin. Moving around will not relieve the sensation, but you feel as if you have to do something.
Fatigue is a real problem. It’s a tiredness which feels as if it pulls the body to the ground. At work, I used to feel as if I wanted to just crawl under a desk somewhere and sleep. It makes you want to cry. I never did crawl under a desk to sleep, but I did sometimes go home.
Some people experience mental fog or vague awareness. Is this fatigue? The brain is just too tired?
I don’t wear a bra. The straps across my back hit the fibro nerves and create a wave of pain. A wave which will not go away as long as I’m wearing the bra. It feels like someone has stuck their finger into my back and will not let go. I can’t twist or walk away from it. The best I can do is beat the area with a wooden ball on a dowel stick. A trick my physical therapist taught me. Obviously, it won’t work for the spots on my face. That would be bad—and people would call in the cops.
I’m also oversensitive to light and sound. I’m oversensitive to scent as well, but find that actually useful. I can smell things before most people, and I know it’s a real scent. If I smell vanilla, I know there is vanilla around. Unfortunately, it is also true for body odor, skunk, and dog poop—yuck!
All of this causes a lot of chatter within my senses. It gets loud with light, sound, and scent. My ears will ring or hiss. My vision will show shapes of light and dark across a room. It is less intrusive when I’m outside. Smells seem to get stuck up my nose. Sometimes, it’s all just too much.
I’ve recently found out that my jaw popping and locking up all the time is also associated with fibromyalgia. It could be that the muscles in the face react to the pain and cause this problem. It’s possible that the muscles are continuously pulling on the jaw. Although the face isn’t an area associated with the magical eighteen tender points, there are many points on the face which are sensitive. These points also cause headaches.
Most of us fibro people, also have digestive disorders, Irritable Bowel Syndrome (IBS). It may manifest with diarrhea, constipation, or both. It is possible to be hit with both at the same time—you don’t want to know what that’s like!
IBS is the cause of my defeat. When it’s a problem, I’m totally lacking in the nutrients I need for energy. I’m totally depleted. This is when I’m hit with fatigue and fibro-fog. Another reason to pay attention to what I eat and when. Imodium is a saving grace. Some people at this point will cover their ears and say, “too much information!” I want to remind those people of the title of this book, FiBroMyAlgia!
There are a lot of symptoms linked to fibro. In fact, I’m starting to believe that if it’s a symptom, someone is going to link it to fibromyalgia.
The Oregon State Fair
I woke up, startled by the alarm. It was just 7:00 a.m. I so wanted to just roll over, and say screw it. In fact, I did say it to myself. My body hurt in every fiber of my being. I felt like I’d been hit by a Mac truck. I knew though, that if I didn’t get myself up, I wouldn’t be able to handle the fair. This was just the first day. My husband rolled out of bed, and started his morning preparations. He was also tired. Just because I have fibromyalgia does not mean that I am the only one in the house who might be tired, or not feeling well. This is something I always have to remind myself of. Other people hurt, too!
By many people’s standards, 7:00 a.m. is sleeping in. For us, it’s early, very early. We just got to bed at around 1:30 that morning. We knew we needed to get to bed earlier, but there were things that still needed to be done to prepare us for the Oregon State Fair. Usually, we go to bed at around 3:00 a.m. So even 1:30 a.m. was early going to bed, but for this night, not early enough. We tend to be night owls. Although why? I haven’t a clue.
Seeing my husband drag himself out of bed, even though he was still very tired, made me push myself out, also. He is after all, doing this for me. How could I look at myself in the mirror if I wussed out now?
We had been preparing for this event for weeks. Making sure everything was ready; clothes washed, food prepared, business cards printed, etc, etc. We knew that once the fair was on us, there would be no time to do anything else—if we wanted to get any sleep at all. I definitely wanted all the sleep I could get. This was the third year we had done this, and we knew how hard it was going to be.
There is a picture by my nightstand. I look at her every morning. She is wearing a, “No guts, No glory,” tee-shirt. She is in her early twenties. She has brown, shoulder length hair. She is excited and her eyes sparkle. You can’t see the color of her eyes, but I know they are greenish-brown. She is me at the age of twenty-four. Above her head is a slogan which reads, “Live it!”.
I put that picture up around eight years ago. That was before the doctors had diagnosed me with fibromyalgia. I knew something was wrong, and was finding myself pulling away more and more, from the things I loved to do. One morning, I woke up and realized that I had trapped myself. All I was doing was working at my job and sleeping. Life was literally passing me by. I made a decision that morning. I was going to live a full life. I pulled that picture out of the mess of pictures in a drawer to remind myself of the way I used to be. I put the slogan into the picture to remind myself of what I wanted. It’s ironic. When I was that age, I hated that picture. I look at her now, wishing I was her again. I would gladly accept that silly, happy smile.
Anyway, back to the first day of the fair. I forced myself to roll out of bed and started my day. I ignored the aches, and focused on the excitement of being a part of the Author’s Table. Darrel, my husband of twenty-seven years, drove us the fifty-some minutes to the fair grounds, and helped me set up. When I was ready, we kissed and he headed out to Mel’s Diner for breakfast. His favorite eating place. He knew where all the best food places were at the fair. I knew where the best coffee was.
I prefer to wait until my stomach is more awake before eating. I had to be especially careful to make sure I did the right things, or I knew I wouldn’t be able to finish out the day—much less the fair. The fair is an eleven day, twelve hour a day, marathon. I had to eat good foods, sleep well, and take my medicines correctly. I’m lucky to not have an addictive personality, but this means I have to pay attention, or I will forget to take the meds. If I forget and take them late, the pain will overcome me. I may not be able to get back control. The symptoms of fibromyalgia never really disappear, they just abate, and become controllable. Some drugs don’t remove the pain. They just cause you not to care about the pain—or anything else for that matter.
For this event, I wove my hair with the colors of dark brown and purple. I like to be spontaneous. It’s fun. It is also a good distraction. I don’t like it to be obvious as to how I feel. People mean well—mostly—but people saying I look tired, makes me feel tired. It is not a compliment.
“You look tired, are you feeling okay?” Means, “You look like crap. What’s wrong with you?” And also, “Please don’t really tell me, because I would find it extremely boring.”
This year they placed the author’s table in the main fairway between the exits. Our tables had the best exposure of all the tables in the building. The building was also the only one with air conditioning in the fair grounds, and we were smack dab underneath the units servicing the whole building. Cold air was literally blowing our papers around. It didn’t take long before I realized that I wouldn’t be able to wear the lighter, fun clothes I had selected for the fair. I also realized that I would have to wear the fun, funky gloves I just finished sewing. Sigh—so much for fun.
I wasn’t the only one cold. It became obvious that half the authors were cold. You could see a progression of authors wearing light, summer clothing to wearing winter coats. I, of course, was in the coat section. One of the authors suggested that I ask Mary Kay if I could move to one of the other tables. I looked at this lady, and asked—very politely—if she would trade places with me. I could see the panic building in her eyes. See, I said, no one would be comfortable sitting down there. She made a hasty retreat. I can be obnoxious sometimes.
That is probably why it takes a special group of people to tolerate me. I can be rather dry. I’m thankful that Darrel thinks my dryness is funny. He actually enjoys my pokes. I’m very careful to not jab at him though. He doesn’t deserve it! He’s a real sweetie. I didn’t used to be like that. I used to just suck it up, but I’m a lot less tolerant now. It’s probably due to both, my age and the fibromyalgia. I’ve also realized that most of my emotional baggage comes from sucking things up and not saying anything.
I’ve known for a while that I needed to write something about the fibromyalgia. The first time I tried, it read like a technical journal. Totally without any sympathy or personality. I was a tech writer at the time. Now, I write magical adventures, whimsical fantasy. I am trying to tell this like it is, but with humor and humanity.
Many people suffer from fibromyalgia, and those who do not, just don’t understand. I would like to shed some light. I would also like to acknowledge all the other ailments which cause people to lose their independence and spirit. It sucks.
It was on about the third day of the fair, when a man asked us if we had any books written about the Oregon State Fair. I found that surprising, because I had dreamed the night before that I was writing about the authors. I asked him that if I did, next year would he buy it? He said he would of course. Whether he would or not didn’t really matter, an idea had formed on how to write about the fibromyalgia.
This year, I didn’t hide the facts of my ailment to the other authors. Indeed, I used it as a reason to not go up on stage, and read from my books. I also used it to complain about the refrigerator above our heads. It was Julie who identified it as a refrigeration unit, instead of air conditioning. She was spot-on. She wound up wearing a parka during the last hours of every night.
Sandy asked my why I didn’t go up on stage to read from one of my books. I told her because I have fibromyalgia, my body aches. I was just trying to make it through the fair. I didn’t need the added stress of standing up on stage reading. She replied that it was easy to forget about the fibro because I was so vivacious. She probably meant difficult, but thank you Sandy.
No one wants to be around a sad, little person, and I need people to want to be around me. It makes me not so little, or sad. Oh, and by the way, why do they have the authors standing during the reads? Colene and Florence are in their eighties, and Steve had a broken leg. Steve organized the readings and read himself every night—standing up on stage with his broken leg. Maybe, he just likes pain. Speaking of which, I had to wonder if he too had fibromyalgia. He certainly had the symptoms. Even before he broke his leg.
Many people have fibromyalgia and don’t know it, and many people are fast to claim it for themselves when they do not. It will steal your life. Don’t claim it if you don’t have to. The pain steals life and liberty—and the drugs steal awareness. Be careful! They can both leave you empty!
One of the authors asked me what fibromyalgia was like, I usually tell people it’s like waking up with a bad flu—every day. I did the same answer this time. She said, she would just go back to bed. She didn’t hear the words, “every day”. Remember the picture of my young self saying, “Live it!”? You can’t live it if you never make it out of bed.
That eleven days was a steady stream of quick sleep and fair time. Fair time was all about talk, talk, and more talk—stand and sit—and then talk some more. The fair is the only public outlet for a lot of independent writers. Sure, I would love to sell hundreds of books, we all would, but it’s more about meeting the people we write for.
The first year I had three books available. I thought I was writing for young adults, but when an eleven year old girl stood before me, I realized I wasn’t comfortable selling it to her. I kept asking myself about the Rave party in the book. Did I want her to read about it. After the fair, I decided to just make them adult books with my comfort level being fourteen and up. I hate censorship, but respect moral responsibility. I know the kids today are very street smart, in fact so was I at that age, but...
This year, I was offering six books for sale. I was close to the seventh book, but couldn’t quite get it ready in time. Now, I’ve started yet another. This one in fact. Sometimes, we have to write out the words which are the loudest in our brains, and sometimes those words aren’t very convenient for a book.
I knew the fair was going to be a marathon. Every morning, I tried not to think about how I felt. I just got up and got moving. I knew that when this was over, I’d have to take a break and rest my overtaxed body. I knew the fibro pain, would be worse than before, until I got rested up again. It would build up, and the fatigue would take me down.
Sometimes, I can’t tell the difference between fibromyalgia pain, and the pain caused by something new. I can’t tell when I have a real flu. It matters, because I really should take some aspirin or something for a flu. Aspirin doesn’t do anything for fibromyalgia. So why take it? If I can’t recognize where the pain comes from, I can’t treat the problem. It is easy for a cold or flu to hide within all the fibro pain, or for the meds to shield it. The flip side is that sometimes I barely bump into something, and the pain shoots through my body as if I broke it—meds or no meds.
We had a food table in the center of our area. We each brought food to contribute to the table, or at least most of us did. It is frustrating that some people never bring food, but always manage to help themselves to the table. Why are there always, always moochers?
I bring more than my share, but I understand the need to eat real food, and not just the convenient fair food. We also have our own private stash of food, and a cooler which holds iced peppermint tea and cranberry juice. Everyone is encourage to bring what they will need. The fair does offer good food if you know where to go, but it gets expensive.
The first day, I brought deviled eggs—good protein. They lasted around ten minutes. Since Darrel and I served ourselves first, we had a good breakfast. I try to set an example of foods to bring, real food. That would be meat and cheese trays, fruits, or even Fig Newton’s. Basically, whatever I want to eat, I bring some for the table, too. It’s too easy to find unhealthy foods—the fair is full of them. A couple of veggie trays showed up this year as well as fresh fruit. I brought deviled eggs again. This time I brought two full trays. Colene brought fresh baked ham that same day. A vendor served up blueberry pancakes. We all had a very tasty breakfast. It was fun. Food is fun!
What typically shows up are donuts, cookies and chips. This could end up being someone’s meals for the entire day, or even for the entire eleven days. Some authors just wont go out into the fairgrounds on food hunts. They don’t want to leave their table space.
There is a lady who sells waterless cookware in our building. She always cooks up extra during her last cooking lecture. It’s usually chicken or pork with broth and vegetables. Those lucky enough, or fast enough, can get a hot cooked meal. It’s good eats. Also, sometimes we can get Tillamook cheese and other vendor samples. Good food is so important to keep us all from getting sick.
I made a trip to the coffee lady several times a day during the fair. Most people don’t realize that caffeine helps with pain. That’s why it’s in Midol. I don’t even drink a cup a day at home, but I needed more help during the fair.
About the fifth day my ankle swelled up to about twice its size. I didn’t even realize it until we were home. I meant to keep seated after that, but the display on the table is a little high, so we need to stand to interface with people. I couldn’t seem to help myself, but just kept jumping up and down.
Why do I put myself through all this? A girl came to the table this year, and told me that last year she had bought all three of my historical fictions. She asked me why I did that with Vevila (you have to read the book to know what). I told her it was because it explained how Vevila could be in the modern books. She glowed. She grinned as she selected two new books. She was so excited to be getting more books—my books! This is why I write. This is why I sit at the author’s table. People are my inspiration.
I had one lady come to my table who had been saving my card for a year. She was so excited to see that I had a new release. I can’t say why she hung onto the card. People just do things like that.
I helped a young lady publish her first book. She was just getting out of the Navy. She showed up at my table with her family. We had never met before. All the mentoring had been done through email. It was her grandmother who had met me at the fair the year before. The new author was so excited about her published book—and I had a hand in it! She might even show up on our side of the table next year.
Being at the author’s table allows us to share our knowledge to the public, but also with each other. I have a lot of formatting and eBook knowledge. Colene is an expert on talking to the public. She always looks over our displays and helps us get the best look for our little spaces. She’s a true sweetheart. I helped three authors to set up eBook accounts. We also played a lot of Sudoku. It wasn’t always busy.
It wasn’t always fun at the table. I had one lady who thought I should know her, because she bought a book from me last year. I’m very sorry, but I’m just not that smart. I can’t remember the thousands of people who come to our tables at the fair. She knew my husband from school, but he wasn’t there, and I couldn’t remember much except her brother’s name was Fayne. Hum, I wonder why that name rang a bell. I felt really bad, she was so disappointed. I was hoping she would come back later when my husband had returned—but she didn’t.
Sometimes people want to discuss the books themselves. I don’t mind telling them what they are about, but I don’t like talking into details. It could be a spoiler for someone listening in. I also don’t want to have an evaluation of a book at the table. It’s the wrong time and place. Amazon and/or Goodreads is an excellent place for that. It’s very tempting to talk book, but not very smart.
The second to the last day, I had a headache building into a loud, continuous roar. I sat away from the table, and let my husband take care of the books. A girl of probably seventeen, came up to my books, and demanded that I tell her about them. I gave it my best—really tried. My headache was so bad, I knew I wasn’t explaining things very smoothly. When I offered her a card, she glared at it as if it was dirty. She snatched it away with a curt, “Oh, okay.” Then she stomped off.
I got too angry, and the anger flared up the headache. I tried to walk it off, but even though I wasn’t angry any longer (still annoyed though), I couldn’t shake the pain. I couldn’t prevent the fibro fog. I couldn’t think. I was useless. We left early that night. I was so out of it that I almost forgot to bring home the purse which had all the money in it.
I don’t know if fibro fog is caused by the pain, or is a symptom of fibromyalgia all on its own. We simply cannot think. It’s very similar to having a migraine headache, but I’ve had the fog without the headache—and headaches without fog. Who knows?
Oh, and by the way, thanks a lot little, brat girl! Just who are you anyway! Authors are people presenting something very personal to the world. We are not vendors. The lady selling the pots and pans, did not make those pots and pans. You can criticize the pot, but if you criticize her cooking, chances are she won’t feed you—ever. It never bothered me that this girl didn’t buy my books. In fact, I’d rather she not. Like I said—it’s personal.
Sure, authors want to make money. Funny thing, us liking to eat and all. I want to make money selling books, so I have the time to write. I can’t write books while holding down a 40+ hour work week. If you want to read, you have to support the authors. If you want to listen to music, you have to buy the artists songs—same thing.
Right now, I probably can’t work for other people. They just won’t jack up that heat. Can’t say I blame them. My house is usually eighty degrees. Sitting in a cold place is intolerable—been there.
It was probably good that we left early that night. Both of us needed the extra sleep and a chance to regroup. The next day—the last day—was a good day. We met with people who actually wanted to talk with us. This is a great opportunity for those interested in becoming published authors. We have the answers. We are living it, breathing it, and doing it. Most of us are self published, or “Indie” authors. It’s a puzzle to me what the difference is. I don’t see it. I only know of one author, out of us twenty-five, who currently has a publisher. He wrote a sport’s book. There were some who have had publishers, but were at the time, promoting their previously published books.
The last evening ended early for us. The building cleared out rather quickly. We got to pack up—take all of our stuff—and go home. The other nights, we left everything there, except our personal stuff and the change bag.
The last day is rather strange. We meet new people and make new friends. We grow closer to the authors of the year before, and we have to say goodbye for another year. Some authors meet up through the year, but most live too far away. There is always some drama between people, and we are glad to bid them ado. But some people are truly special. I make sure I have their books even if it is not my normal reading genre—and I read them. Next year, we hope to do it all over again.
The Day After
I knew we would pay for the time we ignored our bodies. Both, my husband and I were tired, but we felt successful. We had made it through yet again. I couldn’t wait to get writing again, to satisfy that loud voice in my head (no, I’m not hearing demonic voices—sheesh!).
I write a lot of fact in fiction. I try to present things in a way that will make people think, and maybe even to act. I try to support what is good in this world, and to bring tolerance to the unknown. I know that many Christians are disturbed by my writing. They believe that there is only one way—one story. I believe that there are as many paths as there are people.
Although my brain was screaming for me to write again. I could not. My body was too hurt. I was too fatigued. It’s hard to explain just how much fibromyalgia hurts. It gets more intense with every day. I don’t know if it’s more pain, or me being less able to shove it aside.
At some point, some people become unable to deal with the pain, and end up bedridden, or too doped up to function. The nerves scream, and we grow weak, too weak to withstand the constant flushing of pain. We become intolerant of our own bodies. Our bodies become traitors to our wills.
After the fair my arms hurt too much to type on the computer. They felt as if there were rubber bands pulling them downward. I also didn’t know what to eat. My stomach seemed to complain with every suggestion. Sleep, I needed sleep. So, I slept. I was too tired to even climb into the spa. Oh yes, we have a spa. It is a little four person spa with a 110v plug-in. I would live in it, if it wasn’t for the weather outside—that and I would drown.
I made a scheduling mistake this year. I didn’t give us both recovery time. Darrel only had one day, and then he was expected to return to work. This—after the eleven day marathon. I didn’t get the dates correct for the time we would need to rest. It’s amazing how many people thought we were on vacation, because we were going to the fair. Vacation my ass!
A few days later, thinking I had recovered, I asked my husband to take some pictures of my purple/brown hair. I wanted to catch it before the purple faded. We have a digital camera so I can get immediate results. Well, maybe I shouldn’t have. My hair was still purple, but my skin was gray. My eyes were puffy and dull. I thought I was smiling, but my mouth in the pictures was tilted instead of smiley. Needless to say, I probably won’t be using any of those pictures. I’m awfully vain when it comes to photos. Photos can live longer than the people in them.
I missed my husband when he went back to work. I just wanted to lie in bed. I have to have the excitement of something which will drive me from the bed every day. I see my husband, and I want to be with him. To share every day with him. When he goes to work, I sometimes feel bereft. We have a lot of time together, but the more time we get, the more we want—need.
I know we did not give ourselves enough time for intimacy. It’s hard for all couples to time their lovemaking. It’s particularly hard for a woman with fibromyalgia. Men were made to gather testosterone during the night. By morning they are up and ready to go. Mornings are the hardest part of the day for a woman with fibromyalgia. We wake up in pain every day. It is the most difficult part of our day. I swear, sometimes God (or Goddess) is such a turd!
I need to take my medicine right away in the morning. I huddle on the couch with blankets for an hour feeling cold. I feel cold at this time of the day even if it is eighty degrees in the house. By the time I feel like a normal person, our day has advanced. We are busy. The morning passion has faded. If we have the day off, and if we don’t have a million other things clamoring for our attention, and if no one bugs us, we can have some afternoon delight. We all need our afternoon delight!
There was no afternoon delight the day after the fair, or even during that week. I wasn’t even ready for a little tickle. The fair had taken its toll.
Some people think I just sit around the house and do nothing. Wrong! I’m a restless personality, and must be working on something! I have to pace myself now though. I can’t just whirl-wind stuff anymore. I used to immediately finish whatever I started. Brutally, pushing through if need be till it was done. I can’t do that anymore. I might do it, but it will be a mistake—and I will pay for it.
Long ago, Darrel and I had decided to split up the home tasks. I never understood the reasoning as to why women assumed all the home chores. We both worked, we both contributed to the house. That way, on our days off, we could both play.
We had gotten behind with all our tasks during the fair. I had taken time before the fair to cook and sew, and to get the business in order (book orders, publishing, advertising). Darrel had been caught up with the laundry, but now it was a pile in the hamper. So now, we were both behind. It took about two weeks to get our nest back into order.
We got caught up on our movie watching and games, too. The cats are no longer mad at us, either. I started writing again. Life is good. Now, about that afternoon delight...
Before Fibromyalgia
I think it’s important to describe who I was before the surgery. So you can see just how much it changed me.
I was physically active. My husband and I had gotten our black belts in Taekwondo and were practicing with Ninjutsu and Taijutsu. I was working a 12 hour graveyard shift as a process technician, working 6 at night until 6 in the morning. This worked with 3 days on, 4 days off, 4 days on, and 3 days off—it pivoted. I was good at my job, and well respected by operators and engineers.
During our weekends, which was never on the weekend, we would go get Jeff. Jeff is Darrel’s son. We would all do whatever sounded like fun. He was born in 1980, so at the time of the surgery he was twenty. We hadn’t been as busy with him since he graduated from High School. He was doing his own things. Hanging out with his own friends.
Darrel and I had moved to the country. We were riding bikes, gardening (which was new to us), I liked to sew a lot. We bowled, golfed, played pool. Sometimes, we just toolied (drove around). We went out to movies. We had good money coming in, and tended to splurge on fun things to do. If we wanted to just leave for the coast, we did. That was a two hour drive to the coast. Sometimes, we just went there for a crab dinner, and then drove back home. It was fun.
I was never tired! Well okay, I would be tired if I drank too much the night before, but then I deserved whatever I felt the next day. Other than that we came and went continuously. I hadn’t known what fatigue even was. I liked that pulling feel in my muscles when I worked out the day before. I knew I was making my body stronger—could do more things. This was a time when I might actually laugh at the soreness of my muscles. I felt so alive!
How? What? Fibromyalgia
Initially, I had Gerd, Gastroesophageal Reflux Disease. I had a hiatal hernia and a constriction ring. Medicine was helping with the heartburn and keeping the erosion of the esophagus to a minimum, but the condition was getting worse. So I decided to look into the Nissen Laparoscopic Fundoplication. The surgery was considered minimally invasive, no big deal. It seemed like a good idea at the time.
They make five little incisions in the middle of the abdomen, and then use an assortment of tools to pull down the stomach from its herniated position. They then use the upper part of the stomach to wrap around the lower end of the esophagus and stitch it into place. You can be up and back home by the next morning. That evening if you perform correctly.
I had this done twice. The first time was in 2000. I woke up really sick, and had dry heaves. My husband said I was positively green. Apparently, I had a problem with the anesthetic. This might have caused the internal stitches to break. I was pretty doped up so don’t remember any pain, but the surgery didn’t take, and I was worse off than before. I had even more Gerd.
At the start of the next year, 2001, I went through it all over again. This time they sent me to surgeons who specialized with this procedure. We all knew now about my reaction to the anesthetic, and did not make that mistake again. They had to undo the stitching of the first surgery, before repeating the procedure. I was on the table for three and a half hours.
I wasn’t sure it had worked. I was better than before the first surgery, but still had some heartburn. As the swelling from the surgery diminished, the discomfort started to reduce. I still have it to this day, but over the counter medicines seem to keep it maintained.
The problem I had with the second surgery was that from the time of waking up, I had a 7/24 problem with diarrhea. In modern times (now), the medical profession acknowledges this as a risk, they call it gastric dumping syndrome, or rapid gastric emptying. During the time era of the surgery, they wouldn’t even admit that I could have a 7/24 diarrhea problem caused by the surgery, much less anticipate the possibility. They kept pointing fingers around to other sources, or saying it couldn’t be so. The evidence was pretty obvious to me. It didn’t matter to me what their reasoning was concerning the surgery. I knew, I woke up wrong, and never seemed to get better.