I have been a part of fibroWORLD for a long, long time. Just after the dinosaurs, when MSN Groups was all the rage, that is when I got my start. I have not been very active the past few years for a variety of reasons, but for those of you who remember me, I am sure you are not surprised at my fibroAPPROACH©. For those of you that I am new to, “Yes, I can put “fibro” in front of ANYTHING!”
And, I am curious: What do YOU put “fibro” in front of? I hope to hear from a lot of you!
It all began when I founded fibroLIFE©. Just as its name says and demonstrates that having Fibromyalgia affects your life—all of it!
Not only do I LIVE my fibroLIFE© this way, but my desire is to help others do the same.
In my own very REAL way, with a lot of what I at least consider humor and, I hope at least a dash of inspiration, I share my experiences, what I have learned, and new information I come across in the hopes of helping anyone else with Fibromyalgia minimize the “fibro” and maximize the “LIFE” in their own fibroLIFE©.
In the past, now, and in the future, you will find me discussing and encouraging others to “LIVE” with and in spite of “fibro”.
I am revisiting some old topics and adding some new, but yes, I really can put “fibro” in front of EVERYTHING!
I want to be clear that I never—not now and not back in “the day”—have believed that I know enough to be an expert on all of these topics and all the others yet to be added. I know some about most of them, and am happy to share that, but I fully acknowledge and depend upon other fibroVOICES© in these areas as well. This is why I want to form fibroVOICE©. I want experts in each area to lead the way in developing the fibroBASICS© in their own niche.
I hope this explains clearly how I view fibroWORLD. I hope this clearly expresses my desire to help everyone with Fibromyalgia, or affected by it through affiliation, to face, yet minimize, the “fibro” and to find new, creative, and alternative ways to embrace “LIFE”. I hope this clearly shows you my heart in the matter: I am not an arrogant upstart who thinks she knows it all and can do it all. I just know how difficult it has been to get to the point I am finally at in my own fibroLIFE©, and I want to bring together others and meet the needs I see and read about daily.
Yes, I really can—and will continue to—put “fibro” in front of ANYTHING and EVERYTHING, because I want EVERYTHING to be possible for those LIVING a fibroLIFE©.
I am curious: What do YOU put “fibro” in front of?
I truly hope to hear from a lot of you!
LIVE your fibroLIFE© to the fullest EVERY day!
fibroLIFE Works© Returns!
My two favorite parts of fibroLIFE were fibroTRAVEL© and fibroLIFE Works©. I am happy to announce today that fibroLIFE Works© has been revived at our website!
What is fibroLIFE Works©?
Originally the title had a dual meaning: Making your fibroLIFE© “work out” for you or actually finding a way to “work” in spite of LIVING a fibroLIFE©. While both would still be appropriate, I have decided that in its revival, I will limit the title to actually finding a way to “work” in spite of LIVING a fibroLIFE©.
My reasons are:
Each time I add someone to the fibroLIFE Works© feature page, I will post a link to their information. I will add these links to the ongoing list of links my sister, Melanie Moake, RN, uses to keep our scheduled post queue filled. Therefore, it will actually be an ongoing reminder to our followers about the services, products, etc. available and encourage them to buy from them and/or utilize their services.
Would YOU Like to have YOUR fibroLIFE Works© Story & Information Featured?
If you have a business, service, product, etc. that you are involved with in spite of
LIVING a fibroLIFE© and would like to be featured at our website and have your information frequently shared for others to see, please contact me at email@example.com and include the following:
A brief bio about yourself and having Fibromyalgia (whatever you are comfortable sharing)
I am thrilled to be doing this again because, in the end, I truly believe what I am forever on my soapbox about: we can LIVE in spite of having Fibromyalgia. Any little thing I can do that may help just one of you find LIVING your fibroLIFE© a bit easier, more fulfilling, etc. is how I find part of my own happiness while LIVING my fibroLIFE©!
LIVE each day of your fibroLIFE© to the fullest!
The world must have "big picture" people, and I am thankful to be one. However, the problem with being a "big picture" person is you see so much to be done all at once. It has gotten me in over my head my entire life. One of the many, many things I had on my "to do" list when fibroLIFE© was booming in Paducah, KY, was developing network of FMS and related illness bloggers. There was no way our little group of volunteers could do all we were doing and accomplish that too. It does make me smile, however, to see that it was obviously a very good idea...
I am so pleased to announce that I am now a PROUD member of Chronic Illness Bloggers Network!
Chronic Illness Bloggers is the brainchild of Julie Ryan, of CountingMySpoons.com.
I was aware of CountingMySpoons.com and Julie Ryan, however we had never been in touch and I was not at all aware of Chronic Illness Bloggers Network until my friend, Celeste Cooper, told me I should discuss an idea I had with Julie. If Celeste suggests it, I usually do it, so I thought I would re-acquaint myself with Julie's work. That is when I stumbled across the Chronic Illness Bloggers Network.
My co-director, Kathy Keeney, returning to work in the real world, and then our move from Paducah, KY, to Vicksburg, MS, had really played havoc with my fibroLIFE-related efforts. After several false-starts, I had only recently found my footing again. I was so excited and wanted to join the network immediately. You cannot imagine my disappointment--and shock--when I did not meet the minimum requirements! I had not been blogging again, consistently, for three months. I was floored! All the years I have been online, active in what I call "Fibro-world", and I had allowed myself to become so irrelevant that I did not qualify to be a part of a group much like one that I had envisioned years before! I will tell you, that was a low moment for me.
Well, Celeste was right: I did need to connect with Julie Ryan, but there was no way I was going to approach this brilliant lady until I was qualified to join her network! I really only had to wait about six weeks--maybe less--but it seemed like an eternity! I must admit, however, there were days that I think the challenge kept me plugging away at putting out new blog posts in spite of feeling badly.
Finally, the time arrived, I applied, and, as they say, "The rest is history!"
No...actually, it is NOT history!
This is an important part of my new beginning. The blogging world has "grown up" while I was floundering, and I am learning new things daily from the network members. I am discovering very talented bloggers with a variety of styles and approaches, which are inspiring me--and challenging me a bit too! I am also meeting new people in the Fibro-world.
Not only do I benefit, but you, my readers do as well. Not only will I grow as a blogger, but I am sharing posts from my fellow network members on my facebook pages and my Twitter feed. Please, read them and start following them as well. These fellow bloggers--as you know, I call them all fibroVOICES--are working hard, each in their own way, to help everyone facing a fibroLIFE. They have much to share that we can all learn from, and I am sure that they too are encouraged when they see that their posts have been read, and especially when someone takes the time to comment.
Obviously a "big picture" person herself, Julie has also been generous with her valuable time and help. I am also enjoying interacting with the other bloggers! While I am still feeling-my-way as the new, yet old, blogger-on-the-block, in just a few short days I have become 100% sure that I am blessed to have been accepted into this network of bloggers.
I want to say up front:
I am 100% behind all the research that is being done.
I am 100% behind all the existing organizations, support groups, etc.
I am 100% behind all the bloggers, websites, coaches, books, aps, etc. that are out there, as long as they are not peddling snake oil!
I am 100% behind all of the Fibromyalgia Awareness initiatives, events, etc.
I am NOT being critical or finding fault with any of them. All they are doing is essential! Still, I have this nagging question…
What Do We Do While We Wait for the Science to Figure Out Fibromyalgia?
When I moved over 18 months ago, I was hopeful that I could decrease the number of physicians I had. After all, everything I was reading, being told by specialists I personally knew, and hearing at conferences was that Fibromyalgia management was shifting from specialists to primary care physicians. I sought out a highly respected local primary care physician, set up my initial appointment, and found him to be just as amazing as I had been told, but…
You guessed it: He did not feel he could manage my fibromyalgia medications. In fact, he told me that he would be questioned immediately if he wrote the scripts for the meds I was on.
I was floored! My treatment plan is extremely conservative as well as firmly rooted in traditional medicine. I consistently average taking only half of the pain medication I am prescribed. Other than the one pain medication, I am on anti-depressant and anti-anxiety medications, one of them a very old med, which have proven to be the most effective treatment for me over a period of several years. My medications, however, are not “the big three” that have been approved for FMS because those medications did not work for me. In fact, the three approved medications do not work for many people who have FMS.
My initial response was sort of like, “No problem! I have been at this a long time so I will teach you what you need to know about Fibromyalgia! I have taught two insurance-based health coaches, countless other people who have FMS, as well as their families and friends, and even physicians I know listen to what I have to say on the topic. I write about it, stay on top of the current news about it, and I LIVE it, so I am the perfect first fibro patient for you!”
While he had no doubts that I knew enough about it to do exactly what I was saying, he was still adamant that in this state, he would get called out immediately if he tried to manage my medications. Wow. I am still floored every time I think about that fact. My primary care physician cannot—would not be allowed—to manage my very conservative fibromyalgia treatment plan. On top of that, the nearest FMS doctor is an hour away, in a much larger town, and very difficult to get an appointment with.
I have a son still living back home, as well as many other family, therefore I travel back home frequently and have continued to see the same doctors for my fibromyalgia. My local, primary physician has been wonderfully understanding and willing to work with them should the need arise. While this has worked for me, it is inconvenient, and might well not be doable for other people in the same situation.
Seriously folks, I ask you: What is wrong with this picture?
Why, especially since FMS has finally been acknowledged as real, is it so difficult to find doctors who can and/or will treat it? People with FMS are overwhelmed enough without having to also search for, and often travel long distances for, physicians to treat FMS.
Just yesterday, Necie Edwards, one of my trusted fibroVOICES©, posted a link to an article by Daniela Semedo, PhD, in Fibromyalgia News Today entitled:
Fibromyalgia Treatment Often Depends on Physician’s Specialty
This is all too true! In fact, in spite of having been acknowledged as a legitimate condition, the job of setting consistent treatment standards has not been taken up by any organization.
Also, recently, the Senior Director of the American College of Rheumatology wrote this response to another of my most trusted fibroVOICES©, Celeste Cooper:
… the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010. This endorsement was published and cannot be “undone,” so readers can and will continue to see that endorsement online and in print. However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease…"
This is the reason he gave:
“For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time. This means readers can always find more recent information than something published 6 years ago – and that is the case here. An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.”
For the complete article, click here: http://fmcfstriggerpoints.blogspot.com/2016/04/acr-responds-to-inquiry-on-fibromyalgia.html#.V2qxc4-cHIU
Traditionally, rheumatologist have been the lead in diagnosing and treating FMS. Now, they are no longer supporting guidelines for its diagnosis. Even better, the reason why is basically because the science is always changing.
I am floored again. Yes, we are learning more and more about FMS all the time, and that is a good thing! We are also learning more about cancer, heart disease, diabetes, arthritis… The science behind medicine is always changing! That has not stopped us from having standards followed across the board by all healthcare providers for each of these conditions! The symptoms monitored, the wording used when discussing them with each other and their patients, etc. is consistent! When the science changes enough, they all change along with it, but in the meantime, standards do exist!
There are many excellent books already written that could be adopted and/or adapted to set these standards. One in particular is by Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain. Yes, the science has changed since it was written, but not so much that the basics it covers—what I call fibroBASICS©--have changed. In fact, in many ways the science has supported, backed-up, and validated what Celeste said in her book.
Now back to my original question:
What do we do while we wait for the science to figure out exactly what Fibromyalgia is?
Perhaps the better question is: Why are we waiting for science to figure out exactly what Fibromyalgia is?
The fact is, many of us are not.
We have become active, passionate voices, talking about our own experiences with FMS. We are keeping up with and sharing the news about FMS, and relating it back to our own experiences with FMS. We are educating one another. We are supporting one another. We have become coaches, authors, bloggers, speakers—patient experts--fibroVOICES©.
At my website and in my blog, I share information about and links to the fibroVOICES© I trust in my own fibroLIFE©. If you would like to be featured, have your blog listed, or have someone in mind that you think should be featured and listed, please send me your info and I will check it out. FMS varies from person to person, therefore I fully acknowledge that treatment modalities must vary as well. I am happy to include anyone except Snake Oil Peddlers.
In the meantime, while the science continues to advance, change, etc. the various existing FMS groups will continue to work within their own niches. I encourage us to continue to support one another.
On a personal level, it is my goal for us to get this point across and achieve these goals:
The information exists and has been proven over a period of years now--We know a great deal about how to manage FMS, how to find the best individualized treatment plan, how to support and help those with FMS.
As well as LIVING a fibroLIFE, do you struggle with weight?
I really would love to hear from you!
It is very hard, and I do not know about you, but some days,
I feel very alone with my battle. ~Meshea
My Big, Fat fibroLIFE©!
Heck of a title, huh? Can any of you relate?
Well, for me, this is just how I really feel about it.
I am five feet, zero inches tall but heavy enough to be six feet, six inches, and that is by my reasonable standards, let alone what the crazy weight charts have to say on the matter!
Here are the facts:
And currently, I am losing the battle with weight so yes, I am LIVING a Big, Fat fibroLIFE©
Points I Want to Make:
What Am I Going to Do?
Well, now that I have gotten all of that out of my system…
At the same time, I am going to be happy, positive, and forward thinking—typical me!
I am going to LIVE my Big, Fat fibroLIFE©!
Besides, even when I am thin folks, I am over-the-top and bigger-than-LIFE most of the time anyway. ;-) Those of you who know me, feel free to verify that in your comments! ;-)
May you LIVE your fibroLIFE to the fullest every day!
Meshea Crysup, Founder fibroLIFE©, LIVING a Big, Fat, fibroLIFE©
A while back, I had planned to write about what "LIVING" means to YOU--to challenge each of you to LIVE your fibroLIFE to the fullest--to embrace reality for what it is and then RUN WITH IT! Instead, I found myself unable to issue the challenge to you or even to do so myself because of a fibro flare. Or...maybe I did LIVE up to the challenge myself? Let us see what do you think as I share that event with you now. ~Meshea
For Such a Time as This
I have had weight loss as a priority all this year--and when you LIVE a fibroLIFE, you can only get so much into a day. So, this week, rather than writing FIRST, which is what I used to do, I have taken my morning walk with Cally. Yes, it was the right thing to do for her, and for my weight loss goals, but after, I have had to sleep at least three hours. Then, I have had other priorities to attend to. Laundry, cooking, cleaning, shopping, errands, etc., all of which take a great deal of energy on my part, resting in between, etc. Frankly, I have run out of day each day thus far.
I have been in horrible pain at night, finding it too much even to do twitter and facebook updates really. I am even behind on Words With Friends, which is my favorite form of distraction from the pain. Therefore, I have not gotten back up, as I used to when unable to sleep, to write either.
Today, rather than being better, I am actually worse. The night was horrible with pain beyond words...a true "If I were a horse..." night for sure. Morning found me exhausted, sore as if hit by a train multiple times, with swollen hands, feet, and face, hot flushed skin, and nauseous to the point of needing to just be very still. Cally and I did not walk. The only cooking I have done is to to microwave Hubby's Jimmy Dean Delight this morning. No cleaning, no laundry...no Words With Friends even. I am still behind on Twitter and facebook. Those of you who know me well will know how badly I feel when I tell you I am still in bed actually, hair and make-up left undone. Yes, FMS is kicking my butt today!
I did pass some time, however, watching a movie. Yes...those who know me...I said "watching". You see, I almost always have Fox News or The History Channel on, playing in the background, but I rarely "watch" anything. I am a "listener". I stay busy...going from resting to folding laundry...back to resting, then Swiffering the floor...then resting. I actually only "watch" something when Hubby is home or when I have ladies over to watch movies, either faith-based, historical, classics, or Broadway-type productions. Today, however, I watched a DVD I had bought for just such an evening...One Night With The King...which is the story of Esther. Peter O'Toole, Omar Sharif, etc. Faith-based and a classic...for I am truly a multi-tasker at heart, from birth I think!
I would like to say that I enjoyed it. I really did try but I just feel so very badly and it goes so against my grain to just sit and "watch" something when I am alone and there are so many other things I want to accomplish. In case you have not gathered yet, that is what LIVING is to ME. I am happy when I am actually working toward doing one of the many, many things inside my head and heart...and almost always that means writing to make a difference. Rather it be about my childhood...for it was not The Brady Bunch, my failed marriages, my failures as a parent, my struggles with faith, or, of course, my moment-to-moment battle with FMS, for me, LIVING means making the best of all that has happened in my life.
If sharing any of my hard-lessons-learned helps just ONE person, then I will gladly share it all...for that is the heart I was born with. I cannot believe for a moment that God allowed a child to be born into the hard life I had...the fear... such fear...and the resulting ultimate lack of good judgment I showed from time to time, the resulting, never-ending struggle with faith...and the horrible battle I have now with FMS, all for naught. No, I do not fancy myself a modern-day Esther. I will never save an entire people by winning the love of a great king...but I write freely of my struggles to help those who have the same struggles...many of which, for whatever reasons, whether shame, embarrassment, fear, etc., do not openly talk about their needs or reach out to others.
Like each of you, I hate being this way. I am educated and capable of earning six-figures, taking care of myself, having and doing as I please...but for my health. Instead, I am in bed, still. Hair not done, make-up not done, and all I have accomplished is "watching" a movie--.but FMS will NOT rob me of LIVING today. I will not be ashamed, for FMS is a real illness. I will not disappear from the blogs, facebook, twitter, etc. I may not be as active as I would like, but I will...I have...poured my heart onto this blank screen...as cleansing as a simple, blank piece of paper was to me when I was a frightened child.
In a moment, an hour, a day--just as I began feeling so badly, I will again feel better--if only for a moment, an hour, or a day...but I will LIVE each of them--rather good or bad--to the fullest. FMS is but a condition of my body...not the condition of my spirit! My body endures FMS but my spirit is stubborn, ambitious, and determined! There may be errors, for I am not at my best--but LIVING to ME is reaching out to each of YOU and SHOWING YOU that FMS is but a condition of our lives, not the end-all-be-all-result of our LIVES. You see, I do not know that there was a destiny that brought me to this place...perhaps, perhaps not. But I do know this: where ever I am, whatever my situation, FMS raging or just chomping at the bit to do so, I will LIVE as my determined, stubborn, ambitious heart dictates. I will live at all times for "such a time as this"! Not for some grandiose moment of ultimate moment of importance, but for each simple, precious moment I have!
I want to add this: I learned as a child--a very frightened child--that no one really lives like The Brady Bunch, and that was perhaps my greatest lesson. I interject that here because it applies. It is so important to see that LIVING with, IN SPITE of FMS, as difficult, unfair, painful, etc. as it may be, is not really a unique challenge...but rather the exact SAME challenge every living being faces. Perhaps, in some bizarre way, we are even lucky, because having FMS forces us to face this truth head on.
I know myself--and what LIVING means to me--and I have tried to share that here with you. Now, as I had planned all week, but in a very different way than I had planned, I challenge each of YOU to do exactly the same. Define, each of you for and within yourselves, what LIVING really means to you, and find a way, IN SPITE of all--not just FMS, but all adversities--find a way to LIVE at all times for "such a time as this"!
May you LIVE your fibroLIFE to the fullest today and every day!
Introducing a new feature at MesheaCrysup.com: Living a fibroLIFE…
Yes, it is true, I seem to find a way to put “fibro” in front of everything, but I am sure you have come to expect nothing less of me! ;-)
What are fibroVOICES©?
Actually, they are not a "what" but rather a "who". Simply put, fibroVOICES© are individuals who are speaking to and for those of us with Fibromyalgia.
They are the ones writing blogs, authoring books, coaching, teaching, researching, treating, encouraging, inspiring, and never giving up on helping each of us with Fibromyalgia LIVE their fibroLIFE© to the fullest.
Why is this a “New Feature” at my website?
I have never nor ever will believe myself to be the ultimate authority of Fibromyalgia! There are so many intelligent, talented, and dedicated individuals who have created so many great books, blogs, etc. I am in awe of the work they have done and I want to be sure those who follow me are aware of them.
Each of our fibroLIVES© are unique, thus, how we experience Fibromyalgia is unique. While I am positive I have information and experiences to share that will be helpful to some, I know I am not the perfect fibroVOICE© for all. I would be doing an injustice if I do failed to introduce you to fibroVOICES© other than my own, therefore I am introducing you to the fibroVOICES© I trust in my own fibroLIFE©.
Each fibroVOICE© brings their own unique gifts and talents to what I can the “Fibro World”. By providing you with other fibroVOICES© to choose from, I hope everyone will find several that they relate to, feel comfortable with, and ultimately trust.
So please, come to www.MesheaCrysup.com and check out the drop down menu under “fibroVOICES©”. I have several there already and will be adding more as quickly as my fibroLIFE© allows.
LIVE each day of your fibroLIFE to the fullest!
Founder of fibroLIFE
If I were read to that title as a blog follower, my first thought would probably be, “When does Fibromyalgia not really interfere with LIVING?” I expect that was your first thought as well. Certainly, it impacts every day, but some days are undoubtedly worse than others.
Some days it feels as if FMS is barely allowing you to even exist! How does one LIVE on those days?
Eternal optimist, champion of positive thinking, and all-around annoyingly perky person that I am, I must confess, even I struggle on those days—a day like today.
Then comes the voice of doubt:
Look at you! Who are you to tell people they can LIVE a LIFE of substance, value, happiness, and fulfilment in spite of having Fibro? You are not going to make your luncheon and meeting today. You are not going to accomplish the things on your “to do” list. You cannot even go to bed or stand or sit without hurting beyond words! I, Fibro, am calling the shots today! In fact, we both know I, Fibro, actually call the shots every day! I, Fibro…
Every ounce of my being rebels:
Fibro, you should have stopped while you were ahead!
Yes, you are playing havoc with the things I want to do at this moment, but you will NOT stay at this level! You will let up and when you give an inch, I am going to be physically and mentally ready to take a mile!
O.K. I am kidding myself about the “physically ready” part, but I am on a roll here…
The real battlefield is after all in my attitude.
I am at a loss at this moment. I am being run over, knocked down, imposed upon and within, and made to like it but I am also stubborn, determined, and a fighter!
Just give me an inch Fibro…
I dare you!
I WILL take a mile—one step at a time—but I WILL take it!
At the moment, the battle is not going my way, but in my mind, I already see its end. I am the victor!
When Fibromyalgia really interferes with LIVING, this is how I LIVE through it...
I fight the battle within my mind. I battle, and I beat, the negative thoughts. I visualize—I focus on when the symptoms let up and what I will do—the LIVING I will do when that happens. I focus on the things that inspire me, the hopes I have, the plans I have, and the relationships I have.
Not everyone copes in the same way—I understand that. But we must each fight, and win, the battle in our own minds. Not everyone feels they still have inspiration, hopes, plans, or relationships. That may even be true, but you do not have to let it remain true.
You will have FMS no matter what you focus on—no matter what you think about or allow to LIVE in your mind. CHOOSE what those thoughts are—that is the first step! And remember that not choosing is choosing by default. It is just allowing “whatever” to move in and rule your thoughts.
Who we are—actual LIVING—begins in our thoughts. Retain command of those, and you will never lose yourself! Win the battle in and of your own mind and when Fibro gives an inch, you will be ready to LIVE your fibroLIFE.
I saw a social media meme the other day that was joking about how we used to answer the phone, which had only one ring tone--RING--without any idea of who was on the other side waiting to speak to us AND we SOMEHOW survived! I had to "ROFLOL!"
I also saw one that showed a phone receiver dangling in the air, hanging by its chord from the phone on the wall and it said, "This is how I used to block someone from calling me!"
Again, I had to "ROFLOL!"
I recall many people I knew thinking "back in the day" that taking the phone off the hook or not answering once we had caller ID and could see who was calling were just awful things to do. I was never one of them. Even then, I knew that a telephone was MY tool, not the other way around!
So many of us with FMS hate talking on the phone. (It is exhausting, stressful, and draining to most of us, but that’s another post on another day!) Guess what? You do NOT have to! A telephone is a tool for YOU to control. Do not let it control you instead.
I personally talk to my husband, parents, children, siblings, and a few friends that I know do not text or who would not opt to call me unless they really needed to. Other than that, everyone else knows to text me if they want to reach me. In fact, if my friends see my name come up on their caller id, they answer with, “What’s wrong?” because they know I do not talk on the phone.
Out of necessity, I do accept business calls, but I have the numbers programmed in my phone so I know who is calling. I do not answer just any number that comes up. To deal with all other calls, I even frequently have my voicemail greeting say, “If you need to contact me, please text me, and I will reply when I can” It does offend some people, but most adjust quickly.
Do not feel guilty! You have the right to control who you speak to, when you speak to them, and to communicate in alternative ways. Actually, considering the fact that nearly everyone has a cell phone, tablet, etc. with them at all times, most people have decided that their phone is a tool for them to control, not the other way around. Those of us with FMS are not the only ones!
I know you have all seen the memes on social media--the ones like: "No one really wants to hear how I feel so I hide it all the time". Often they go on and on to talk about how alone it makes the person feel, what a lie they are forced to live, etc.
I understand that people relate to them--I have been there, done that! However, now, these memes infuriate me! I want to "Soap Box" every time, right then and there!
Please listen: You are not doing anyone any favors by pretending you are O.K.
It is true that no one wants to hear us complain about every ache and pain we have, and I seriously doubt if any of us want to even try to explain them all anyway. However, that does not mean we should simply say we are “fine” or “O.K.” when people ask how we are doing.
First and foremost, we have the right not to have to pretend all the time! Pretending is exhausting and the last thing we need is something else to drain our limited energy.
Secondly, how are we going to educate the public about FMS if we are not honest about it? Seriously, think about that. We already know we “don’t look sick”, mostly because we work really hard at it to be perfectly honest. In fact, I have begun using that fact to help me with this situation.
My standard answer has become, “Thank you! I work very hard at looking this good! I even made this dinner my main priority for the day, and slept as much as I could, using my “good” energy to get ready and to be engaging this evening!”
Obviously, I’m not advocating that you give everyone all the gory details. Other common comments I make are:
· I am doing well considering I am fighting a fibro flare.
· I am happy to be able to be here. I was not sure I would make it because FMS pain kept me up most of the night.
· I am doing well today. Thankfully, I’m not mentally foggy, in horrible pain, or too terribly fatigued.
· I am doing pretty well, but I am foggy today so just take that into account if I say something that sounds loopy!
· I am doing pretty well, but I did have to take cab because I am too foggy to be safe to drive.
If we use these honest but limited types of responses, we can reduce our own stress as well as begin to change the mindset of others regarding FMS.