Book Review: TAKE BACK YOUR LIFE Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse, Fibromyalgia Coach
TAKE BACK YOUR LIFE
Find Hope and Freedom from
Fibromyalgia Symptoms and Pain
by Tami Stackelhouse, Fibromyalgia Coach
I have been familiar with Tami Stackelhouse, via her online presence, for several years. I am very happy to see her many accomplishments and not at all surprised that she came up on my radar as I began researching the latest books to help those with Fibromyalgia (FMS).
One of the main things I most liked about this particular book is that it does not bombard the reader with an explanation of FMS that is so in depth that one needs a healthcare background to understand it. In fact, I found that she understands what I have been shouting for years now to anyone who will listen: We who are blogging, writing books, etc. are overwhelming people who are looking for help with their FMS and the reason they are looking for help is because they are already overwhelmed because they have FMS! I was thrilled to see that Tami acknowledges the need to have a basic understanding of FMS, which she explains very well, as well as acknowledging that readers are not reading her book to become an expert on the medical-end of FMS but to find help in getting better!
Will this book help you find help in getting better?
Well, while this goes without saying, I feel I must say that if you are looking for the proverbial “magic beans”, they are not here—but they are not ever going to be found anywhere! No matter what book you read, doctor you see, treatment you try, etc., you will not find that sort of easy, magical answer. That said...
Tami does a fantastic job of balancing hope and realistic expectations in this book. She fully explains that many factors determine just how much you can improve, including how bad you are to begin with, how long you have been as bad as you are, and how much effort you put into getting better. While she does emphasize the “how much effort” aspect, she does not do so in a condescending way, making you feel guilty if you do not improve to the same level she has, so do not shy away of this book for that reason.
Tami has organized the book well, comprehensively covering the identified goal while keeping the book relatively short, given the vastness of the subject. She covers traditional medicine as well as alternative medicine, and goes above and beyond providing links to worksheets or tools she has created to help you with the actions she suggests you take, and much more.
Most effective to me, however, is her ability to use examples from everyday life to explain her points. These comparisons, or metaphors, stick with you, aiding in remembering what she has told you, keeping it straight, and applying it to your life. This method makes it an amazingly fibro-user-friendly self-help book. Again, she “gets” that readers are already overwhelmed and have bought the book for help. This book, if utilized as intended, certainly delivers.
On my “Fibromyalgia Made Simple” scale, I give this book a 10!
Tami Stackelhouse encourages hope and healing as a coach, author, and founder of the International Fibromyalgia Coaching Ins...titute. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style help women with fibromyalgia take back control of their lives.
Healthline named Tami’s blog as one of the "15 Best Fibromyalgia Blogs of 2015" for its quality and contribution to the fibromyalgia community. Tami is also the author of the international best-seller "Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain."
Visit Tami's personal blog at www.MyRestoredHealth.com or the Institute at www.FibromyalgiaCoachingInstitute.com
I remember being a pre-teen and experiencing horrible pain “down there” that I really did not know how to describe. That did not matter, however, because I was not going to tell anyone about it—ever! I had never heard anyone else talk about pain “down there” unless they were talking about “those women”—you know, the ones who did “bad things” and did not “take care of themselves”.
Now I was certainly not brought up in a house where talking about “down there” or sex was taboo, but regardless, my lips were sealed—until I was in my forties! Even then, I did not talk about it. Instead, I wrote about it—in my fibroLIFE Daily blog.
Fibro Secret three for me: Vulvodynia
Once again, I was hurting in a place and in a way that I was just not comfortable telling anyone, but I was determined to have some answers, so I turned to the only friend I could share such a secret with: Google. I entered the phrase “vulvar pain”, Google did what Google does, and once again Google showed me that I was not crazy and I was not alone. I was one of the unlucky ones experiencing Vulvodynia.
Excerpt Below From www.mayoclinic.com
Vulvodynia (vul-voe-DIN-e-uh) is chronic pain in the area around the opening of your vagina (vulva) for which there is no identifiable cause. The pain, burning or irritation associated with vulvodynia may make you so uncomfortable that sitting for long periods or having sex becomes unthinkable. The condition can go on for months or years.
If you have vulvodynia, don't let the absence of visible signs or embarrassment about discussing the symptoms keep you from seeking help. Treatment options are available to lessen your pain and discomfort.
The main vulvodynia symptom is pain in your genital area, which can be characterized by:
The pain you experience may be constant or occasional and can last for months or even years, but it can vanish as suddenly as it started. You may feel the pain in your entire vulvar area (generalized), or it may be localized to a certain area, such as the opening of your vagina
I had certainly learned about Vulvodynia in nursing school, but all I can imagine is I had not had any symptoms for a while at that time so I did not put two and two together. In fact, I do not think I ever came across the term again until Google showed me. Also, obviously the symptoms listed could be from other things, such as a Urinary Tract Infection, a Yeast Infection, etc. I had always spoken up when I felt the symptoms fit a UTI, and once I was older, I had sought care also when the symptoms fit a Yeast Infection.
Rarely did I actually have a UTI, however. Nor do I ever recall being diagnosed with and/or treated for an actual Yeast Infection. I do know I was given antibiotics for a UTI several times since obviously “something was going on” in spite of the negative test results. As I got older and had to see the doctor about so many symptoms which, once I was diagnosed, almost always ended up being attributed to my Fibromyalgia, I just dealt with the symptoms myself rather than discuss yet another thing with the doctor.
Vulvodynia, however, is not always as simple as UTI-type symptoms, and at times it certainly was not for me. I would have times, in public, such as when giving a lecture or talking to my mother-in-law, when suddenly I would have a sharp, spasmodic, burning pain just hit me “down there” from out of the blue. Over the years, I have become pretty good at not showing just how much pain I am experiencing, but I have never learned to totally cover this one up. When whoever I was with would see the look on my face and say, “Oh my, are you okay? What happened?” I would sort of smile and laugh it off with something like, “Oh just one of the many odd fibro-spasms I have to live with.” Then I would find an excuse to be by myself to deal with the pain as quickly as possible without being too obvious that the pain was “down there”. That is the kind of day I was having when I finally turned to my friend Google.
In the years since that day, my friend Google and I check out the phrase “Fibromyalgia and Vulvodynia” every so often. Each time, we come across more and more information like the following excerpts:
One of the most painful effects that sometimes happens in women who have fibromyalgia is a disorder known as vulvodynia.
Women with vulvodynia are 2 to 3 times more likely than other women to suffer from other chronic pain conditions, such as IC, IBS, or fibromyalgia, according to results from a meta-analysis of studies pertaining to that issue, published in the July issue of Obstetrics & Gynecology
The examples could go on and on, but you get the picture: More and more, Vulvodynia is being linked with Fibromyalgia. Apparently, more and more women are speaking up about this Fibro Secret of having pain “down there”. I am glad to be one of them, especially if it will help someone else. But for those of you still keeping the secret, I do not want you to feel badly. I wrote about this for the first time probably four years ago. I said the word out loud in a conversation with my husband for the very first time just this week. I understand how hard it can be to share your Fibro Secrets, but I know that if you really need to, you can do it. Sharing an article like this or information from online or a pamphlet might be a good way to start.
Several years back, I started noticing the sounds of music when I was putting my make-up on. I felt silly when it suddenly occurred to me that it was coming for the upstairs apartment we were renting out at the time. Our young tenant and friend loved his loud music. Relieved that I was not hearing things, I gave it no other thought--until the apartment was empty but I was still hearing music.
A very close family member is schizophrenic, so you can imagine what I immediately feared: I was truly scared--scared silent! Most of my life I knew I was not well, yet I was in my thirties before finally being diagnosed with Fibromyalgia. I knew the, "This one's problems are all in her head look..." all too well. Those days were finally, mostly, behind me and I was determined to keep it that way, so I remained silent--but the music did not.
I continued to hear the music almost every time I put on my make-up. I was also hearing it when I would try to go to sleep as well as when I was trying to concentrate on what people were saying to me or when trying to focus on television or movie dialogue. I was also no longer always standing in the same place when I would hear the music. It was playing in my head anytime and anywhere it pleased. Sometimes I could identify a song, other times just certain instruments. There were also times when the music would be just low enough that I could almost make out what it was, but not quite. That was especially frustrating for me.
One especially frustrating morning, I decided to take a chance. I Googled "I am hearing music when none to be heard." I am not sure what I expected exactly, but I was pretty sure it was going to involved words like mental, crazy, etc. Thankfully, I was wrong! Instead the word that came up was familiar to me but not in the vein I had expected. It was Tinnitus! "Musical Tinnitus" to be exact!
I had suffered from Tinnitus my whole life but I only knew it as ringing in my ears. I was aware that some people heard roaring, buzzing, or even whistling, but for me, it had always been just a ringing. In fact, it was rare if I did not have ringing in my hears at one degree of loudness or another. I had been told that part of it was the medications I took, but since the Tinnitus came before the meds, it was mostly identified as part of my Fibromyalgia. In fact, some statistics say as many as 75% of those with FMS also have Tinnitus.
Relieved, and with a hard copy of the information in hand, I finally told one of my doctors what I was experiencing. Thankfully we have a solid, mutually respectful relationship because the glance he gave me over the spectacles placed lowly on his nose was speculative, to say the least. "I have never heard of Musical Tinnitus!" he said. Laughing, I said that if I had not found many legitimate, reputable articles about many other people suffering from it, he still would not have heard of it--at least, not from me!
Several years have passed since my big reveal, and I have met several other people who also are hearing music where there is none to be heard. I have even had discussions about it with a couple of specialists, and they were unaware that Tinnitus was so prevalent in those with FMS. Proudly, I told them that my life's motto is, "If you're gonna be a bear, be a grizzly!" therefore, I did not just hear ringing, buzzing, or roaring! No, I had a band in my head--sometimes even a whole orchestra-- and most of the time I enjoyed their musical selections! They laughed, which is what I intended. Yet again, I have found that my sense of humor is my best coping mechanism when it comes to LIVING my fibroLIFE. I am especially glad--and relieved--that I am able to laugh about this particular Fibro Secret!
Recently I was asked to discuss the nuisances of having Fibromyalgia that one would not necessarily find in a book, research writings, etc. As our discussion of FMS moved along, this person asked to just speak on the phone or do a live web chat. At that moment, what this person was seeking became perfectly clear to me: Fibro Secrets.
What are Fibro Secrets?
Those of us with Fibromyalgia are indeed a quirky bunch. We deal with symptoms and issues we are hesitant to even share with one another, let alone doctors, researchers, etc. After all, they seem to struggle just accepting our pain, fatigue, mental fogginess, and mood symptoms. If we talk about much more than those issues, we fear losing credibility. Thus, there exists our Fibro Secrets. Every time I have opened up about a few of my own, I have had multiple people tell me how relieved they are to know that they are not the only one!
What are these Fibro Secrets?
There are several, so I am going to make this a series of blogs in which I share my "Big Three". I call them that because of how difficult they were to ever discuss with anyone and/or because of how many people who I have told that have basically replied with, "Well, that is just nuts!"
Meshea's Fibro Secret One: I hate talking on the phone!
Also taking the award for The Most Eye Rolls Ever, this is my best known Fibro Secret. In fact it is so well known that to still call it a secret is very misleading. I continue to do so because I know many others are still hiding how they really feel about talking on phones. At nearly every conferences or fibroLIFE event I have attended, I saw the proverbial weight of the world seemingly lift off the shoulders of several around me when I have said, "And I do not talk on the phone!"
Immediately, I hear, "It is not just me?" or "My family thinks I am nuts when I tell them this!" I laugh and reply, if someone I know well sees my name come up when their phone rings, they do not bother with "Hello". Instead, they answer the call with, "What's wrong?" I always here a chorus of "Me too! Me too!"
Next, I am always asked why I think we are like this. I can only answer for myself. For me, talking on the phone is exhausting. I have to put energy into sounding like my usual, perky self--of being "on". Texting and emails do not require this surge of my limited energy. Plus, if my words come out wrong, backwards, or if I have to pause to even find them, texting and email does not give that away either.
I talk to my boys, my husband's children, and my husband every time they call and I actually will call them on my own. I answer most calls from Momma, Daddy, and my in-laws. If I am not up to talking, I call them back as soon as I am, and they are very aware of this. I also call them sometimes on my own. I have some other people that simply do not text or do email that I will answer the phone for as well. When business absolutely requires it, I do my best to handle the calls. But everyone else who knows me knows that if I call them, I am putting forth a special effort. It may take me a week to find a time that I feel well enough to call for a doctor's appointment. Sometimes I am not sure which is worse: when the power goes off or the phone call I have to make to report it!
The things I must do each day exacerbate my symptoms and wear me out enough. I do not like being even more tired, having more anxiety, and thus more pain and fogginess over talking on the phone when there are perfectly good alternatives. For those who do not have FMS, I certainly realize this sounds ridiculous. That does not change my reality, however, therefore, for many years this was one of my Fibro Secrets. I now discuss if openly because I have seen how much I have helped others in doing so.
Fibro-fog, in its every varying degrees, comes and goes as it pleases for most of us. Some times we are "clear" enough to function like the rest of the world, other times mildly foggy but functional, sometimes very foggy, and then there are the times when we are totally fogged in! Adding to the frustration is the fact that stress makes it worse, thus usually when we need to be at our best we almost destined not to be, to one degree or another. At these times, an old phrase with a bit of a twist added applies: "I can't see the forest for the trees...and the Fog!"
One of the things I have found that bothers me most is clutter! My foggy mind recognizes what each pile, stack, etc., represents, but I cannot just pick one and work on it. It always ends one of two ways. I may bounce from one pile to the next, only adding to my fogginess and decreasing my progress or stopping it altogether. Or, may I find myself so overwhelmed that I just walk away, certainly accomplishing nothing. Either way quickly diminishes my self-esteem. The next day, there are usually a few more piles or stacks, the cycle repeats, my self-esteem takes another dip: Another Fibromyalgia-induced endless cycle!
I have found that my corkboard approach helps with this as well!
This method helps in several ways.
Oh my goodness, what a fun vacation we had! Oh, y'all do know that we took that picture at one of those "Old Timey Picture" places, right? (Momma insists I point that out to everyone!) But if having fun, laughing, and making the most of a few days away were a crime, we would have plead GUILTY as charged, accepted a LIFE sentence in the Smokey's, and they could have thrown away the key!
Yes, that is me holding the Jack Daniel's bottle and yes, it is empty. They handed it to me that way--really. Standing in the middle is my friend, former boss, and the woman who made my life as a long-term care consultant possible, Martha Workman. Kneeling in front of her is Momma, who raised me to believe I could do anything I put my mind too! The other lady standing is my friend, Kim Steen, relator extraordinaire, who made both our move to Vicksburg and our feeling at home here possible! More than that, however...
Kim also basically single-handedly made my vacation a success! I cannot thank her enough for doing all the driving from Vicksburg to the Smokey's and back! If I had been clear-headed enough to be safe behind the wheel that long, I would not have been able to move the next day, or maybe even the next! I may have not recovered sufficiently until it was literally time to drive back! I certainly owe the success of this trip to her! She is such a good friend, she even let me sleep and did not tease me about my snoring and moaning in pain...very much anyway. We stopped as often as needed, just as I wrote about before. We remained hydrated, kept our muscles stretched, and utilized the heated seats. We also laughed a great deal which probably helped as much if not more than the other things combined!
While in the Smokey's, Martha was kind enough to do the driving, giving Kim a much needed break. Again, we did "all the right things", including the laughing, and managed to do a lot of the things we were hoping to do.
When walking around, touring, etc. we also heeded commonsense. One tour involved a trek up a third flight of stairs. A few of us--I will let you figure out which ones-- knew we needed to skip that, and so we did. One garden we were touring had areas that were not really much to see the time of year we were there, so we skipped them. One location had several parts to it, so we prioritized and used our energy for the parts we most wanted to see. No one pressured anyone to do more than they could or should, there was no criticism or shaming, and we all felt entirely comfortable communicating our needs to one another. By being honest up front about what to expect from one another, our trip was very pleasant, relaxing, calming, and fun!
For those of you who are still skeptical about vacationing, I want to let you know that I have gone on trips very much like this one when I was much worse. I visited Gettysburg and went into such a flare that I had to remain in the car while the others took a closer look at tourist sites. I have agreed to being in a wheelchair on trips to avoid fatiguing myself beyond the point of being able to stay with those who were vacationing with me. I have gone to my room many times to rest, catching up with my group later. Cruises make this especially convenient and doable. So, please know, if you will communicate up front, openly and honestly with who you are going to travel with, plan well including the time and opportunities to rest, and commit to being flexible as well as agreeable with one another, vacationing really is possible, even if you end up in a flare.
I hope some of you will share your vacationing experiences with us here, including your tips, lessons learned, future goals, and lots of pictures! I am very anxious to read about them and see them, and with your permission, share them with our readers! Also, if you want to plan a trip but are having some problems, contact me and I will try to help you figure it out! I love planning--and taking--vacations! I want you to feel the same way about them, in spite of LIVING a fibroLIFE!
I am going to close with more pictures from our trip. I call this grouping "Mountains, Bigfoot, and Bears, Oh My!"
And The Fog Goes On…
I struggled giving today’s post a title, but then I have struggled with everything, for days now. Yes, it is the dreaded Fibro Fog. Not as fun as “The Beat” but yes, it does “Go on…and on and on and on….”
Quickly for those who do not know, Fibro Fog is what those of us with Fibromyalgia experience when we literally cannot think clearly. Thoughts get garbled up, we cannot focus, we cannot find words, we say words backwards, we are not safe to drive, we cannot accurately manage a checkbook, and without spell check, we could not type blog posts, I assure you! Spell check cannot make this post make sense, however, but I will do my best, but you should know, “The Fog is thick with this one…” I am sorry, but when the Fog is bad, my humor is my escape, as usual!
In spite of my foggy state of mind, I do know I was blogging on taking a vacation even though you have Fibromyalgia (FMS). In a way, this is actually a continuation of that. You see, vacations, no matter how well planned, are very draining on those of us with FMS, often leading to Fibro Flares, and for most of us, increased Fibro Fog are a part of our flares. So, the state I am currently in is related to the vacation, for sure. It is also related to the fact that I have been battling allergies for days now and those too always through me into a flare. When you add allergies and a vacation together, now that leads to one heck of a flare!
I have not been blogging because I feel so badly and am so foggy, but then it hit me, that I needed to share just how bad the fog is and how I am managing it. Thus, here I am…
My head is literally spinning, which is a physical symptom of the allergies and fatigue but is certainly making the mental fogginess so much worse. It is very much like being drunk, but I did not get to enjoy any wine, that is for sure!
I am supposed to talk to a group tomorrow about MesheaCrysup.com: LIVING a fibroLIFE. Boy are they in for a treat! A real, honest-to-goodness demonstration of LIVING with FMS! I have pieced together some notes. It will be fine. Seriously, I have put more effort into it than that. I knew this could happen so I prepared sometime back on a day I was feeling better. I just have to manage to get there!
Actually, I am feeling so overwhelmed, I pulled my corkboards out. That is right folks, I mean business! I have taken ONE piece of notepaper and put on it ONE thing I need to do. I have pinned each note up. I wrote down everything I could think of that kept coming and going in my thoughts. I will keep the board close by and do this on an ongoing basis.
When my head is less foggy, I will organize the tasks according to priority. I will also see if some of them are closely related enough to do at the same time or require being done in sequence, etc. Today, I was able to put the things I MUST accomplish at the top. That is all the fog would allow, but it is a start and I am proud to have that much done!
Also, when I am less foggy, as details for each task become clear, I will write them on each individual piece of notepaper. That way, even if I am foggy when the time comes to do that task, I will have some notes to help me.
I realize this next part is out of order, but I am leaving it there on purpose…
You see, having the board full of the notes gives me a visual way of getting things done. There really are times the fog is so thick that I know there are things to do but I cannot pick what do to. By having them on the board, I can see them and pick according to what I feel I can do or even just randomly pick one. This will allow me to feel some sense of control and accomplishment even on the worst day.
Well, for the sake of being real and helping others, I have let you see into my foggy world enough for now. I do need some pride left in tack! I certainly hope my next post will not be quite this real and revealing, but if it is, it is. Folks, this is what others do not see. I look as “well” as always, but I am as lost as a goose today! You would not want me for your nurse, waitress, cook, or housekeeper, I assure you. You see, Fibromyalgia is REAL, and our limitations are sadly so very real...and humiliating. Ah, saved again by spell check...
FOGGED but LIVING my fibroLIFE!
One thing seems to be consistent for Hubby and me: We always over pack! Maybe you are thinking that is not a big deal, but remember, the more you pack, the more you have to carry, load and unload several times, and the more you have to put up when you get home. I do not know about you, but none of that sounds much like vacationing. To me, it sounds like work! I am going to share with you my current, ever evolving notions on packing.
Check the weather before you start packing.
Today we are blessed in that forecasters predict the weather several weeks out. Granted, they are not always accurate, but there is a good chance they will be in the ball park regarding temperatures. Once I have an idea of the expected range of temperatures, I start planning accordingly. If it is the end of one season and the beginning of another, I do go ahead and pack one outfit that fits the possible variation. For example, this trip we are supposed to have temperatures in the 80's. I am taking capris and short sleeves, however I am including a pair of jeans in case we do have some unexpected cool temperatures, which is highly possible at the end of April.
Determine what type of clothing you need.
Once I know the expected weather, I then move on to what type of clothing I need to take. This trip, we have no formal plans that require dressing up, so packing was very easy. I am taking clothing that does not wrinkle, that I will be comfortable in, and that is machine washable. I do not have to be picky about how I put them in the suite case like I do when packing formal clothing that wrinkles easily. I always take a light jacket, usually my denim one, because it will go with about any casual wear and it is light to medium weight. I also keep a raincoat and umbrella in the car. Vacationing almost always involves a good bit of walking so I take practical, comfortable shoes and I take as few pairs as possible. They tend to take up a lot of room in the suite case and are quickly add to the weight of my bags. Luckily this time, again since we have no plans that require dressy shoes, I have determined I will only need the shoes I am going to be wearing when I leave for the trip.
More tips on packing next time!
Start packing early.
I cannot stress this enough. You wanted to be rested up for your trip and you do not want any last minute stress to tire you or throw you into a fibro flare. A couple of weeks before the trip, I do the first two steps of checking the weather and determining what type of clothing I will need, and then I actually start packing. I keep the size of suite case I will need on a bed in one of our guest rooms. As I do laundry and come across items or when I just decide on something I know I want to wear, I put it in the suite case right then. I check the weather the day before I leave and adjust what I have packed accordingly, as needed. When it is time to go, I make one last review of my suite case's contents, zip it up, and I am good to go.
Will you be able to do laundry while on your trip?
This is a major deal to me. We frequently use our condo which have a washer and dryer. Also, many hotels have them as well. If I know that washing clothing is a reasonable option, I do not stress nearly as much about possibly forgetting something. Nor do I over pack just in case I spill something or such. This decreases my stress wonderfully! Also, I usually wash everything the night before returning home. It does not take long, and the washer and dryer can be going while having dinner, going to a show, etc. It always comes as such a relief to know that when I walk in the door after being away, basically everything I have is clean and ready to put away.
Well, like all great plans, this one too got changed, making "flexibility" just as important when planning a vacation, whether you have Fibromyalgia (FMS) or not. I am glad this happened in a way because I do like to point out that while having FMS does make things more complicated, everyone has to plan, deal with issues, etc. We are not that much different from everyone else. In fact, I have found that when I discuss what it is like to travel with me, most people let their guard down and start admitting what it is like to travel with them, and it usually turns out that I am not that much different than others.
I have to stay hydrated or my pain greatly increases.
This means I have to stop to use the bathroom more than some people like to do. While there are those who get behind the wheel and do not want to stop until they get to their destination, once I speak up about this, I find most other people have to stop for this reason too. They do not feel comfortable admitting it sometimes and are actually glad when I bring it up.
I have to stop at least every two hours and stretch.
If I stay in a car, seated for over two hours, I can hardly walk once the car stops. In truth, everyone needs to stretch to prevent blood clots, so again, I am just bringing up what we all really need to do anyway. This also applies if you are on a plan, the train, etc. I have to walk up and down the isles a bit, do some stretching, etc. I do not worry about what others think. And yes, others usually follow once I start here too!
I am often unsafe to drive.
I know most of you can relate to this. If I become "fibro-foggy", I am not safe to be behind the wheel. This can happen to me just going seven miles to Walmart, but I am close enough to home manage it. An actual road trip, however, does not work that way. For that reason, I never do a road trip alone. Most the time I am with my husband and he does all of the driving. When he is not going, like this time, I make sure I have at least one other person with me who can drive. Sometimes, I just let them do all the driving, but if I do drive, I switch up with them when we stop. This works out very well when you stop at least every two hours.
I have heated seats and a neck pillow and consider them a necessity!
Having heated seats keeps my muscles loose, especially if it is colder weather. This is so important to me that I actually spend the extra money every time a buy a new car for this feature. Again, I am not that much different from others. My husband also benefits from the heated seats. A lot of people have discovered how much they help, so a lot people have them. Speak up! If you are with them, they will not mind if you turn the heat on. If they do not have heated seats, you can buy a heated seat cushion designed for cars. It is a great investment.
I also keep a "beanbag neck pillow" in the car. As long as I have it, I can actually get a bit of decent sleep in the car. I also use it though if I just start having some neck pain from just sitting.
I do have to eat!
I have medications I must take, plus if I do not eat regularly, my blood sugar plummets, and I become very weak, shaky, mentally foggy, etc. I do not have to have a big meal all the time, but I do need to have something every few hours. I pack protein bars, snack bars, etc. for this very reason. You know what is coming: most other people have to do the same thing! A lot of people have meds to take that required food or suffer with low blood sugar if they go too long without eating. Therefore, again, most people are glad when I speak up about this.
I need to remain calm because stress is on of my main triggers for fibro flares.
For this reason, I plan carefully, and try to anticipate every possible problem that could come up.
For example, I said earlier that our plans had to change this time. It turns out we cannot leave until tomorrow morning instead of leaving today, driving half way, then getting a hotel. To deal with it, we are leaving early enough that we can stop to use the restroom whenever needed as well as stop every two hours to stretch. It makes for an early start, but it is necessary if I am going to be able to enjoy the vacation once I actually arrive at my destination! Other than just altering our plans at the last minute, however, I had planned! I anticipated this could happen and had my contingency plan in mind. I was prepared for this rather than being taken by surprise and getting all worked up and stressed out over it.
Other than remaining flexible, adaptable, and having contingency plans in place, I also pick who I travel with carefully when it comes to temperament. Vacations are to enjoy, not fight, disagree, yell, or be ugly to each other in some other way. If at all avoidable, I simple will not travel with people like this. I understand that we all have our own ways, but when you are on a trip for three, four, seven or ten days, certainly all of us can just overlook some things others do that annoy us. If necessary, one can always just walk away and simmer down rather than causing a scene or making the trip stressful for everyone. This is one reason why my husband and I enjoy cruises. You can do things together with others as well as go off on your own at times to avoid getting on each other's nerves. It works very well for trips with extended family. But whether I am planning a cruise, a road trip, a train trip, whatever, I make it clear up front when I travel with someone that this is my expectation. No fussing, talking badly to one another, etc., creating a tense, uncomfortable situation. The stress ruins my vacation plus lingers after the vacation, totally defeating the point of the vacation.
It is a relief when you find that other people have similar needs when they travel. It even feels good when, by speaking up, you are the reason they enjoy their trip more. However, I try to not to just spring this information on people when we are actually loading up in the car to go. I tell everyone up front that traveling with someone who has FMS is slower paced. If this is not acceptable to them, I do not strain our relationships over this, I just plan my trips with those that also enjoy a slower pace. So whether you get to pick who you are traveling with or not, do not be shy about speaking up to others about your trip requirements. As you can see, more people than you expect will be in agreement with what you say and happy to accommodate you!
Having Fibromyalgia (FMS) certainly seems to rob us of many things. I purposely chose the word "seems" rather than "does" because, like with most things in LIFE, I believe we can find alternative ways to accomplish most goals. From experience, I know Vacationing fits this category. But before we get into the "how", I would like to discuss the "why" a bit.
The first reason why vacationing is important to us is the obvious: We all need to get away. You have to take care of yourself before you can be good for anyone else. When you have FMS, this is especially true. Do not think that because you cannot make the money you used to make or do as much as you used to do that you do not deserve getting away.
The second reason is a bit less obvious sometimes: Most of us share our fibroLIFE with others, and THEY NEED vacations too! Spouses still need romantic get-a-ways with us. Children still need family fun trips. Our parents and friends still want to go places, see things, and LIVE dreams with us in far away places, etc.
If you are thinking they "whys" make since but the "how" is not so easily managed, well you are correct. I am certainly not going to tell you that traveling is easy when you suffer from pain, fatigue, brain fog, and mood issues. I am going to tell you however that there are things you can do make travel doable! More than telling you, though, I am going to share my next week or so with you, as usual.
In the morning, about 9:30, Momma arrives at the Amtrak Station in Yazoo, Mississippi. ("If I'm lyin', I'm dyin'!" for those of old enough to know why I said that!) On Sunday, we are heading out to Gatlinburg, Tn. I am going to share how I manage such a trip. As always, I will honestly tell you the good, the bad, and the ugly!
I will not start preparing for the trip tomorrow or the next day, however. I started preparing weeks ago! This is the first point I want to make: Preparation is essential!
This trip has been pretty simple to pre-plan because I only have to pack for myself, it is relatively short, will involve only casual clothing, and is not on a strict schedule. All of the above steps are extremely crucial when Hubby and I are traveling. Good news! We will be in June, July, and August! Yes, I will share those trips with you as well! Before this summer is over, I will make fibro-Travel believers out of you!
Blessings this day and everyday!
Remember, LIVE your fibroLIFE!
Yesterday Hubby and I were on the road several hours, giving me a good bit of time to think. Yes, I am going to share a lot of that with you.
What is blogging?
Wow, that is one of those questions that everyone thinks they know the answer to until you ask them! I was blogging before people we were using the term "blogging" on a regular basis. Seriously, I was writing frankly, as I do now, about LIVING with Fibromyalgia (FMS) online back in the 90's. Back then, most of us just shared whatever we were thinking that day, whatever we were going through, or we were giving a response to a question or post made by someone else. As time went on, that evolved into posting articles and explaining them, developing longer articles ourselves and breaking them up into a series, recommending other resources, etc.
Now, blogging is mostly the more "formal" aspects of all of those things we were doing. Yes, people are sharing their personal stories and experiences, but almost everything is written very professionally. There are resources on "how to" blog that recommend not posting until you have a "series" of articles "ready to go" so your blog "flows", building up to selling a book you have written, a program you have put together, an online class, or personal coaching, etc.
I want to say upfront that I see nothing wrong with that! In fact, it was a concept I saw the potential for from my first days of "blogging before we knew we were blogging". Writing articles that give information but also point to sources for more information that is not free is certainly savvy but that does not make it a bad thing. It is honest, fair, etc. People have the choice of just accepting what you share for free or spending money to get more and, by now, almost everyone knows to expect it to be this way.
Other options being taught are to make money from your blog by having ads associated with it. For every ad that is clicked on, you make a bit of money. Yes, it can make a page a bit busy looking but other than that this is also savvy and honest.
Why Am I Blogging...Again?
I know I have openly discussed this with you more than once. I suppose it is a throwback to my original days of blogging where we really did just share what we were thinking and feeling. I realize it does not fit with today's models. It is self-indulgent, and by now, frankly probably boring to most. But, it really reveals who I am to you--and those who know me in person know, I am "very real" with people. Other than that, however, it does fit with what fibroLIFE is: An example of the actual LIFE of someone who has FMS and is trying to LIVE it to the fullest, in spite of having FMS. So, I have decided to go ahead and share my thoughts, again: Why am I blogging...again?
Sometimes, y'all, I know, it is not professional of me, but it is how I would talk to you if you were here, so, y'all, SOMETIMES it is so clear to me. Other times, the fatigue, fibro fog, and self-doubt takes over and I find myself lost. Honestly, one minute the entire future of fibroLIFE is flowcharted out in my head, but in the blink of an eye, it is all lost. I keep telling myself I am going to get it all written out when it comes to me, just as I used to do and have taught so many others to do, but it always seems to come to me when I cannot just stop and do that. When finally I can, it is no longer clear. I have gone ahead and put down what I could remember, but I falter. I get things wrong, I get confused, I forget key aspects, and I forget that some things have to be done in a particular order--I even forget who my target audience actually is. The truth is, some days I have blogged in error. Not in the information I share with you. I make sure to always share from trusted resources, but I falter in my own plans-- in the direction I indicate that I am heading or what my "big picture" is.
Crying now. No, not to be dramatic, garner sympathy, or anything like that. Seriously, I am openly humiliating myself for all of cyber-word to read to OPENLY LIVE my fibroLIFE before you. I want you to see, you are not the only one. I want you to know, beyond a shadow of a doubt that FMS puts others through the same daily trials that you are face.
If I was anything in my past life, it was an organized planner, with vision--big vision. Even a few years ago, I could map out comprehensive plans clearly. I failed to complete them because I did not have the energy--not because I was not able to come up with them. Keep in mind please, I know I have had FMS my whole life, so I am saying that EVEN with FMS, I was able to do this. Just a couple of years back, I still had days that I was "on"--that I was "me". I miss "me".
I hate FMS, and I really miss "ME". Despite so much of the research saying that FMS is not progressive--that it does not affect us in a progressive manner, that we do not "get worse"--I personally have experienced a decline. My fatigue is more frequent and harder to bounce back from. While I may not be totally foggy all the time, formulating comprehensive plans as I used to has become so very difficult for me. It is like the fog now clears away less completely than it used to. I falter far more often, not even realizing it, because the fog is not necessarily so "thick" that I cannot think, but it is there just enough to make me "less sharp".
Why Would Anyone Keep Reading When a Blogger Admits This?
Ah, why indeed!
Well, I assure you, I do not think you should continue to follow me because I am anything particularly special! Yes, I still know I am intelligent with a background and experience that will allow me to help others, but there are a LOT of others who are all of that and more. I read their works, I see what they are doing and realize that I am now struggling so very hard to produce anything close to the level of quality they are, the degree of importance, etc.
Crying...dear God, I miss ME! But...
In truth, I have never been one to blend in! Never! So, actually, I AM being ME, still! A different version--because we all change--but yet we stay the same. True to form, I am not like anyone else out there--and that is why I am not going away and I am bold enough to ask you to stick with me. No one else is "blogging old school" anymore. I am. I am openly sharing with all who want to read it just how a fibroLIFE looks, feels, fails--and succeeds, changes, etc. Whether you have FMS, you have friends or family with FMS, or you just want to know more about it, I have not found anyone else online who is providing this degree of insight into their fibroLIFE.
I am not the ME I used to be. I am mourning that--the new losses I am experiencing--in the open. I am sharing how, in spite of this latest loss, I am continuing to LIVE my fibroLIFE, CHOOSING to do so as a happy person, not as a defeated, bitter, miserable person, not taking my pain, loss, etc. out on others. I am "leading you by example" to stay positive and find new ways to be productive. And my tears have dried--I am smiling--because if ever I have been anything in life--anyone in life--this is what I have always done and who I have always been: Doing things a bit differently than others.
So, take that FMS--I am SILL "ME"!
I am not going anywhere folks. I am going to figure this out--my LIFE--day by day, right here for you all to see, failures, mis-turns, and all!
I am not the same, but I am still "me", in spite of Fibromyalgia. You are not the same, but, like me, you can still be "you", in spite of Fibromyalgia.
I am not just telling you that I am doing this, I am SHOWING you.
Blessings all! Have a great day!
Another blogger with chronic health issues recently posted about her friends saying she writes too much and too often about her health. Boy, have I ever heard that one! I have found that statement, and those like it, actually mean this:
They really do NOT understand WHY I write about Fibromyalgia and HOW Fibromyalgia makes ME feel.
One could suppose that I am arrogant to think that, with all the other people writing about Fibromyalgia, what I have to say is important enough for a blog, a facebook page, or a book, etc. In fact, several years back, a well-known person in the "Fibromyalgia World" asked me that question. Because of my daily limited energy and the need to set my priorities, I have actually stopped several times. Each time I made up my mind to stop doing this, I would come across people not finding the help they are looking for in the existing options available to them. I am not arrogant, but I am unique.
Full disclosure here:
I wrote a couple of those books myself. I expected others to read them, work through them, and apply it to their lives. It took me over ten years and a lot of help to write them. It took me less than one day of looking at the works with "fresh eyes" to realize I was being totally unreasonable and impractical! So, yes, I made the same mistake I see so many others making.
My goal now is to apply what I learned from my own former mistakes to help others who are facing what I have faced myself: Trying to find the best way possible to LIVE a fibroLIFE! That is why I have MesheaCrysup.com, fibroLIFE, and Fibromyalgia Made Simple.
fibroLIFE is dedicated to discussing anything and everything which will help others LIVE to their fullest potential in spite of having Fibromyalgia.
Fibromyalgia Made Simple is an offshoot of fibroLIFE dedicated to breaking down information about Fibromyalgia, getting diagnosed, tracking symptoms, etc. into small, simple blocks of information and actions that those with Fibromyalgia can actually face--can actually digest and work with.
MesheaCrysup.com is their common ground. It also provides a place for expansion.
Folks, I struggle like each of you. Today, I accomplished a fraction of what I wanted to do. For once my head is clear of the fog--I know what I want to say and do--but the energy just is not there. Like you, I know that it is a rare day when both the energy is present and the fog is not. I wanted to just cry. I wanted to just give up. I am so tired--so very drained.
But, I also remember when I was so very ill and no one
knew why. I remember feeling so alone, lost, helpless, and hopeless. I remember the ten years of struggling basically on my own figuring it all out. I remember the few people online that were actually helpful because they were REAL and they really understood.
So, I dried my eyes and dug in my heels.
I write about LIVING my fibroLIFE...
I am open and honest about LIVING my fibroLIFE...
because someone out there will benefit from it.
If I help just one person, then it is worth it all! However those who know me know I never think small! Join me. Comment. Share the posts. Tell others about us. Working together, we can help many others, all around the world!
Thank you for sharing some of your precious time with me today.
Special thanks to all my Words With Friends buddies who play with me when the pain will not let me rest and patiently understand when the pain, fatigue, and fog keep me from playing. You know who you are...and you are all most dear to me! ~Meshea
In spite of having Fibromyalgia (FMS), I am still an intelligent, creative, expressive person with many ideas I want to develop into papers, books, blogs, etc. My biggest enemy is not the pain or the fatigue, however. What holds me back most of the time is Fibro Fog and the anxiety it causes. In fact, I can honestly say that, while the pain and fatigue have limited what I am able to do severely, it is really Fibro Fog that I find the hardest to cope with. The pain will ease up and the fatigue will lessen, eventually, and even those who do not believe in FMS understand pain and fatigue. Ah, but the Fog; that is a different story.
What is Fibro Fog?
For those of you new to FMS, it is that mental state you find yourself in which is literally like a "fog". It leaves you unable to find words you want to say or unable to say the words you want to say in the order you mean to say them. Simple things like making out bills, balancing your checkbook, checking your child's homework, making sure you have everything in your husband's lunchbox, etc. become overwhelming; you just cannot think through them!
What causes Fibro Fog?
As with all things fibro, who knows for sure? There are many theories. Of course, anytime one is fatigued, thought processes are affected. The many theories given by the experts start there and move on to the possibility of low blood sugar, inadequate neurotransmitters, etc.
How does Fibro Fog feel?
Whatever the cause, the best way I know to describe it like a heaviness in my head, usually accompanied by what feels like a band getting tighter and tighter around my head. I find myself unable to process what I am trying to do, to say what I am trying to say, or to keep up with my surroundings. People in stores or cars on the streets just seem to be rushing past me, and though I try to keep up mentally, I feel like I can only think and move in slow motion compared to the world around me.
When does Fibro Fog occur?
Whenever it wants to! Seriously, it is more apt to occur if you are in severe pain and/or are fatigued, but Fibro Fog is its own entity. It seemingly does not require anything else to exist; it just does.
The unpredictability of Fibro Fog, the mental limitations it brings, and my inability to do anything other than endure it until it passes are the reasons why I feel that Fibro Fog is the worst part of having FMS for me. Fibro Fog is the aspect that makes it unsafe for me to drive very far, or even at all. Fibro Fog is why I hate talking on the phone, taking care of business of any kind, or going to new doctors. Fibro Fog is the main reason I cannot be dependable, productive, support myself...it is what has most robbed me of myself. Pain and fatigue take away my vigor; Fibro Fog takes away my ability to communicate and function effectively.
I believe, at least for me, that this is what mostly causes my anxiety issues: the unpredictable, yet inevitable appearance of Fibro Fog. Fibro Fog is what I have been most angry about...what I am still angry about...when it comes to LIVING a fibroLIFE: I truly hate it.
Of late, it has been much worse for me. Not because the fog itself is any worse, but because I am trying harder to accomplish things in spite of it. It is a vicious cycle. I am a bit foggy, but I want to write. So I sit down to write, my head starts to hurt worse, the "band" around it feels tighter, the words get harder to find, the thoughts get harder to form, so I try a bit harder...and then my head hurt worse, the "band" around it feels even tighter... You get the picture.
This causes me to feel even less productive as a person than I already felt. This increases my anxiety. This increases my pain, thus the fatigue gets worse, and then the fog gets worse... Yet another vicious cycle!
I wish I could tell you I had the answers to this, but as usual, all I can tell you is the truth: There is no magic potion, no magic beans, no hocus pocus, etc. and do NOT believe anyone who tells you they have found "the cure"! All I have found that works is keeping life as simple as possible, keeping up with fibroBASICS such as adequate rest, hydration, nutrition, exercise, etc., perseverance, a positive attitude, being thankful and focusing on what I can do rather than what I cannot do, and humor! Thank God for humor! (Oh, and I must not forget, Words With Friends!)
I am so very sorry I do not have something magical for you, but I do hope my openness and honesty can help you in some way. Read this slowly and compare your own experiences with what I have shared here. Share this with your family and friends then discuss it calmly, openly, and honestly. Pass it along to those who may need to read it. Write to me about your own feelings and experiences with that hateful, unrelenting beast, Fibro Fog. Let the anger out, the sadness, and the feelings of loss. But, also, recommit to fibroBASICS and persevere, be positive and thankful, focus on what you can do, and add heavy, daily doses of humor into your life! (Oh, and you might want to try Words With Friends!)
Founder and Director, fibroLIFE
Please take the time to read this wonderful blog by the very intelligent and caring Celeste Cooper! She does an excellent job of introducing a wonderful new book and documentary helpful to all of us who live with chronic pain.
The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MDInt
I recently had the pleasure of speaking with Dr. Lynn Webster for a second time, the first being at the gala and symposium Healing What Hurts: The Politics of Pain, which was also organized by the Center for Practical Bioethics for their initiative, the PAINS Project. You see, before he talked to a full auditorium of people eager to hear what he had to say, he visited in private with our local patient/citizens leadership group, Relieving Pain in Kansas City. He wanted to get to know us on a personal level, because frankly, that’s how he rolls.
(To continue reading, click here.)
One of the hardest things about having Fibromyalgia (FMS) is that I always seem to be beginning again, and again, and again, and again...
I not only find it frustrating, but also humiliating. After all, if I am fed up with writing about "beginning...again..." how much more fed up must my readers be of reading that I am "beginning...again..."? I have actually allowed this to become my excuse over the past few month for not beginning to begin again...again. That excuse can no longer stand however; not if I am true to myself. If my goal is to truly LIVE my fibroLIFE before all of you to help each of you LIVE your fibroLIFE, then I must bite the bullet, swallow my pride, pick myself up, and dust myself off, again, and begin again, again.
Because I know, all too well, that many of you face this exact struggle, and I want you to know that you are not alone, or lazy, or crazy, or any of those other negative thoughts that come to mind when you find yourself needing to begin again, again. You are NOT the only one!
Why does this happen to us?
First of all, this is not limited to just those of us with FMS. Many other people face the same problem, for a variety of reasons, so that in itself should give us a sense of not feeling like the only ones! For us in particular however, it is yet again another nature of the beast we LIVE with. Having a routine, being dependable, being consistent, etc. are just not possible for us because FMS refuses to adapt to a routine, to allow us to be well enough to be somewhere or do something as we have planned dependably, or to behave consistently in our body's in order for us to behave consistently in the world.
What can we do about it?
You all know I am all about being real with you; there is no new mega-potion, no magic beans...there is just fibroBASICS.
We have to take care of ourselves in order to optimize our health, minimize our flares, or at the very least, help them not be as bad or last as long.
We have to prioritize what we are going to do, and stick to. We can not allow others to "guilt" us into adding things to our list, using up our limited "good energy".
And when we do get behind from fatigue, fog, pain, anxiety, etc., we have to remember that we are not the only one facing this. It is just the way our minds work! We feel better knowing we are NOT the only one!
The simple incident this morning with the man and his paper reminded me of that. I am not the only one that fibro knocks off track. Those of you who have FMS understand, therefore it is safe for me to begin again, again. Maybe in doing so, I will even inspire some of you to do the same!
Ironically, this post was much longer. However, when I was doing the picture with the story about the man and his paper, something happened at the blog site and I lost everything I had written. Yes, exactly: I had to begin Beginning Again, and Again, and Again...again!
You just cannot make this stuff up folks!
I'll be here all week!
LIVING my fibroLIFE and hoping to help you LIVE yours too!
Hello Everyone and Happy July!
Yes, it really is me again. I know it has been a long while now, thus the title:
Like a Bad Penny...
I just keep turning up!
Fibro Flares and I have that in common I am sad to say. In fact, I believe I can announce that I am, once again, coming out of a very long, fairly severe, certainly impactful, Fibro Flare.
"Coming Out of a Fibro Flare"
What exactly does that mean?
When those of us with Fibromyalgia (FMS) declare that we are, "Coming out of a flare..." that can be confusing to others. It is possible that if you are newly diagnosed with FMS, it can be confusing to you as well. I often find that people think that means I'm going to be "all better" for awhile, like when someone says, "I am over that cold." They hear me declaring I am symptom-free, and will remain so until the next Fibro Flare, just as they remain symptom-free until they have their next cold. They hear wrongly!
If only it were that simple!
When someone has FMS, they experience symptoms everyday. These symptoms can and do vary in severity. Also, the symptoms are not limited to muscle pain. The list of potential symptoms is very long representing many, if not all, systems of the body. However, over time, each persons comes to recognize their "baseline". Simply put, when you have FMS, you learn what your new "normal" is. While that varies for each of us with FMS, we can all agree on this: Our new "normal" is not symptom-free!
A Fibro Flare is when those with FMS begin experiencing increased pain, fatigue, mental fogginess (Fibro Fog), and feelings of stress, anxiety, or depression. Almost always a host of other symptoms throughout the body will increase as well such as headaches, irritable bowel, bladder spasms, TMJ, insomnia, etc. These flares, or increase of pain and symptoms above our new "norm", may last for a few days, a few weeks, a few months, and possibly even a year or more. They may also vary from mild, which is a slight but impactful increase in symptoms, all the way to severe, which can actually be debilitating.
When those with FMS are experiencing a Fibro Flare, they are able to do less, tolerate less, etc. When, thankfully, they can announce that they are coming out of the flare, however, it must be understood that they are not recovering from a cold, the flu, a broken arm, etc. They are not suddenly "all better" or symptom-free; they have returned to their FMS baseline or their FMS Norm.
My own personal experience has been that, as I have gotten older, or when the cause of a flare has been something major, such as surgery, it takes longer to come out of FMS Flares. Also, I do not seem to bounce back as much; I do not return to my previous FMS Norm. I have found that I have to accept yet another new "normal" such as more pain, more fatigue, more Fibro Fog, more anxiety, etc.
Several of those I know who do not have FMS have said to me that as long as I expect another flare to come along, then certainly one will. A sort of self-fulfilling prophecy I suppose. I certainly believe that we get the outcomes we expect; that if we expect bad things then we get bad things. However, I am also a realist; I believe in facing and dealing with the facts. They key is not to be "positive" by denying the truth. The key is to remain "positive" in spite of the truth! And it is a fact of LIVING a fibroLIFE: Like a bad penny, flares will keep turning up. We must each endure them with as much positivity, grace, and humor as possible, ever looking forward to when we can say we are "...coming out of a flare"
I do not feel like writing daily. As much as I love doing it, some days it simply overwhelms me, and, for my own good and the good of my family, I choose to utilize my limited energy in other ways. I do read Fibromyalgia related materials almost daily...at least one piece on my worst of days. I commit to this for several reasons, a few of which are:
To be aware of what is new in the Medical, Nutritional, and Exericse-fibro world
To be aware of what is new in the Scam-fibro world
To be aware of other good fibro resources to pass along to my readers
To be aware of other good motivational resources to pass along to my readers
I will be honest, I am not much on "touchy-feely", emotional things. I have great respect for such works. I even write them sometimes myself, but I am easily emotionally drained so I choose not to read a lot of things that are going to zap me even more quickly than my own daily life does. I tend to gravitate more toward humorous, motivational, or educational type resources, and those are also the type of pieces I prefer to write.
Of course, I could not in good conscience write this blog if I did not try to stay up on all of the legitimate FMS research and findings. I have a few "go-to" resources which I trust implicitly, therefore I start with them. Often, especially in the case of Celeste Alewel-Cox Cooper, I simply pass links to her writings along to followers. She does an excellent job of "getting to the gist" of the materials and I see no need to re-do what she has already done so well. In fact, while my background is medical, I am glad Celeste spends the time she does in providing all of us with this valuable information because it can be complicated...especially if one is fibro-fogged! I am very thankful to have her permission to share her articles with you rather than to put my fibro-mind through generating such technical, medical-type material on my own. And if I...with a medical background...feel that way about it...
Ah...now we are getting to the "gist" of my article: LIVING a fibroLIFE is basically all about the basics.
It is very important that we have others with FMS who are engaged in the Medical, Research, and Political world of fibro...God bless them for the time, effort, and valuable energy they put into keeping the rest of us in the know! It is important that those of us with FMS are aware of at least the basics of that type of fibro-news. Most of us, however...even bloggers...do not have to have an in depth understanding of all the technical information. Therefore utilize resources such as Celeste to glean the basics! Do not worry about committing it all to memory either! Bookmark important information so you can find it easily later if you wish...just keep in mind the basics!
I avoid emotional articles...because they drain me. Some people are overwhelmed by all of the humor and motivational things I share and write...and they need to avoid what I am putting out if that is the case! My writings about simple, everyday LIVING overwhelm some, so I expect and want them to avoid my writings! Please, be kind about it and direct those to my writings that you think would benefit from them, but please do not spend your precious, limited energy on anything...even my writings...that is not helpful to you!
The limited energy one has with FMS needs to be spent on what helps each person...what lifts them up, motivates them, sustains them, etc. This is a very important basic principle all those with FMS must keep in mind: Use your limited energy for what is GOOD FOR YOU!