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!
Sleepless nights of pain, tears, praying for relief...
Waking up exhausted, drained, sore as if having been hit by a truck...
Tired all day, unable to focus, dozing off while trying to focus on a task that needs to be done because the body simply must have the rest...
All who have Fibromyalgia know this situation all too well.
I thank God that when FMS is taking the lead, rather at night, keeping me up crying and praying, or during the day, demanding that I just "be" and rest, that I am BLESSED in that I actually CAN do what I must do...just "be" and rest. I know many who have FMS, whether because they must work, have little to no support system at home, or whatever the reason, cannot easily make the choice to just "be" and rest. I have been there, pushing until I collapsed and had no choice but just "be" and rest. I KNOW that those of us who can just "be" and rest whenever our bodies demand it are SO VERY BLESSED! I KNOW I am personally VERY BLESSED!
Sure, I had rather feel well, be accomplishing things. I would rather not have spent the night with leg pain so severe that I would swear, "If I were a horse...I would have been put out of my misery!" But, if that is what I focus on today, then FMS wins. If that is what I focus on today, I will become bitter, angry, depressed, etc. I have been there, many times. It is the natural reaction to the degree of pain, fog, and fatigue that FMS causes...and I know what it is like to just go with my very human nature and react negatively...and I felt VERY justified in doing so. Justified or not, that is no way to live.
I have little to no control over where FMS is going to lead me as far as the type and severity of pain, fog, and fatigue I am going to face, but I...and only I...have a choice over what I focus on! I CHOOSE to focus on HOW BLESSED I AM. FMS may be leading, but I CHOOSE how I react...and our reactions are what make up the content of our lives. Our reactions are the only actions we have control over at times like this...ergo, the ACTIONS we CHOOSE determine the content of our lives...of how we LIVE.
Yes, I know all about the rough times when FMS leads...and I KNOW that ONLY I can choose how I am going to face that reality. It is not always easy but it is always worth it. I CHOOSE LIVING!
I thank God for how blessed I am. With that as my focus, I am not being lead down the path of just existing...I am CHOOSING...I am LIVING!
I believe in YOU...
YOU can LIVE too!
LIVING a fibroLIFE
WELCOME HOME TRACY and What is the Difference Between the Fibro Life facebook Page and the LIVING a fibroLIFE Blog?
First and foremost, WELCOME BACK TRACY!
Ok, that said...what is the difference between the Fibro Life facebook Page and the LIVING a fibroLIFE Blog?
Obviously, the name, but that was not by choice. fb simply refused to let me use the letter combination of "fibroLIFE" and insisted on it being like it is now...Fibro Life...so...that is just the way it is.
Secondly, I no longer simply use "fibroLIFE". Since I have had to figure out how to do this part of it all on my own...meaning without co-director Kathy Keeney who is doing GREAT work as Director of the St. Vincent DePaul Thrift Store in Paducah, KY...I wanted to change the name enough to identify that things have changed but to still be recognized by those who knew us before...thus the new website, blog, etc.
Third, and the biggest difference, Tracy or Meshea...and boy is that ever a big one!
Tracy manages most of the content and interactions on the facebook page and I cannot thank her enough for that. Years ago, when I first began my online presence in the world of Fibromyalgia support groups, I loved doing what she does now and I spent hours at it. It is not that I do not care about what you all are posting now...I do...but if I take the time with the fb page that Tracy takes...and it takes a LOT of time...I would never get anything else done! Obviously my time there, the content of my posts, etc. demonstrates just how my focus has changed over the years as I have learned more, experienced more, etc. Thankfully, Tracy came along at just the right time to pick up the fb page and be there for all of you in a way that I cannot do. In truth, she does it far better than I ever did! By the time fb came along, I was already moving on to a different focus...and we have ALL been very blessed by Tracy's devotion to Fibro Life facebook! She interacts with you all far more than I have time to. She posts things more along the line of what people come to fb to find. She is frankly ideal for the job.
As for the LIVING a fibroLIFE Blog...well that is my focus. I have not developed it still as fully as I intend...but soon it will be far more than it currently is. I am about to get the move squared away and to find my niche and rhythm without Kathy. If you want articles, in depth FMS related info, tools, etc. the website/blog is the place you want to come to. But if you are looking for a "support group" atmosphere, you want Tracy at the Fibro Life fb page.
In the future, there will be a bit of a change...not much...just a bit. Any questions posted requesting detailed FMS info will be sent on to me and I will address them via the blog and link it back to fb just as the blog is linked back to it now. This is just to make sure that your questions, which are very important, help drive the blog content. So, please, keep those questions coming!
So, again, WELCOME HOME TRACY!
Blessings to all!
One of the major complaints I hear...one of the major causes of distress I hear ...from others with Fibromyalgia is that they are being told they talk to much about having FMS. In fact, this is probably one of the top five things someone can say to me that will really set me off! Here we are...we have LITTERALLY LOST OUR LIVES to this DISEASE that is not even called a DISEASE...and people who have NO IDEA what we are going through have the AUDICITY to be telling us what we SHOULD or SHOULD NOT be talking about?
Because they cannot SEE our FMS, we must be making it up!
If we would just not think about it so much, we would certainly feel better!
How do we ever expect to get better when our SUPPOSED aches, pains, and fatigue are all we ever talk about?
If we would just stop talking about how badly we feel and get busy with the things we should be doing, we would no doubt find out we really can work, clean house, etc.
You talk about FMS so much that you have just become FMS...you have lost yourself! Uh, we TALK about it because it has happened to us ALREADY...and YES IT HAS TAKEN OVER OUR LIVES! It affects EVERY SINGLE PART OF OUR LIVES ALL THE TIME!And one of my biggest pet peeves...I do not meant to offend anyone's religious beliefs here but: Stop SPEAKING THAT ILLNESS over yourself! As if SAYING OUT LOUD what is TRUE is what is causing our ALL OUR PROBLEMS!
Well, I am thinking you know how I feel about our being told we talk about FMS too much. I do think, HOWEVER, that we may, and often DO, talk about FMS "the wrong way".
I am a true believer in the power of personal choice. Now, I do NOT think we can just DECIDE to NOT have FMS, but I think we can...we MUST...CHOOSE how we are going to react to having FMS. In fact, choosing not to choose is actually choosing by default! So, one way or another, each of us IS GOING TO CHOOSE how we deal with our FMS. This includes how we discuss having FMS.
A recent Zig Ziglar quote I saw was this:
~"Being negative only makes a difficult journey more difficult."
I talk about FMS all the time...but RARELY do I do so in a way that makes others feel like I am WHINNING or FEELING SORRY FOR MYSELF. Not that I did not do my fair share of that for some time, but it hit me one day that it brought me down even more just complaining about all of my symptoms AND people were really just tired of hearing about them! There is a difference in sounding like a whiner or constant complainer and in being matter-of-fact about just how badly you are feeling. That difference lies in are you speaking in a negative manner or are you just being factual AND are you pointing out what you are doing to make things better or to deal with it. The difference is in COUNTERING the negative aspects of FMS with POSITIVE things you are doing to COPE with having FMS!
Think of it like a job. Many bosses do NOT want to hear JUST about problems. However, if you go talk to the boss about a problem AND you have some possible solutions in mind, they are usually VERY WILLING to listen. Family, friends, and even our health care providers are much the same way. If we discuss, honestly, just how badly we are feeling, they do not mind listening IF we just go that extra step AND add things we are trying to do to help, cope, etc. Instead of hearing us whine, they hear how we are FIGHTING!
There is a catch to this however: we have to have POSITIVE things we are doing to talk about. That is the beauty of this! Not only will doing this help improve our relationships BUT it also FORCES us to MAKE some POSITIVE CHOICES. We can no longer let ourselves off the hook with just "reporting" the truth about how badly we are feeling. We are FORCING ourselves to think past the negative truth and look for positive solutions!
Another plus is that once we start this, often those we are talking to will start helping us come up with ideas! That is right! We can list how badly we feel, then all the things we have tried, and often those around us "buy in" to our true condition and needs and they begin trying to help us find better ways to cope!
I do not recommend that you go lecture all those who have told you that you talk about your FMS too much. I suggest that you just implement this new approach, and over time, you will see improvement. Granted, this will not turn everyone around, but it will turn some people around. Even more importantly, however, it turns US around! Consciously CHOOSING how we discuss our FMS will change our mindset...and while that will not "make us better", it makes having FMS more manageable...for others AND for ourselves. It is the inevitable power of positivity verses negativity! Remember, "Being negative only makes a difficult journey more difficult." Conversely then, being positive can ONLY make a difficult journey LESS difficult! This POSITIVE change will help you LIVE your fibroLIFE!
Sometimes I really feel like I am just kidding myself. I feel irrelevant as I struggle to write my little blog in the big sea of online FMS options. To be honest, in the past, I was...allowed myself to be...marginalized. I even bought into it to some degree myself I suppose.
I am very "real". Not unprofessional, unlearned, or lacking in ability or capability...just real and straightforward. Thus, at first it was requested that I give over my approach to FMS but have no say in its implementation. Then my ideas were rejected when I refused to just hand the program over to people who really did not "get it". I will admit, I have felt some degree of self-satisfaction as I have seen pieces of my approach tried here and there, because I really want people to benefit from them. I have also set back and watched most of them fade away because those implementing them never really understood the core of my approach. I could foresee this, which is why I would not just hand it over without having some input.
Now, I do not mind being "odd man out"...it is actually sort of who I am. I have always looked at established systems and honed in why there were not working, and I have never been afraid to "Forge ahead, plead ignorance, and beg forgiveness later." However, as I get older, am more affected by FMS, and now working alone...well...I do sometimes think maybe I should just hang it up.
But then I went someplace new...this time I actually moved to a new place...and I met new people...but their battles are the exact same battles I have seen so many others fight for so many years now...and I realize that I just cannot walk away.
If I am going to stay however, I also have to be true to myself...and I am going to stay...so...I will be, once again, honing in on broken systems...inadequate strategies. I will remain unpopular in some camps from doing so...but that is ok. fibroLIFE was...IS...the correct approach. fibroLIFE identifies and addresses the "missing link" in online FMS support. I will continue to shout it from the proverbial rooftop!
We are giving people with FMS too much to do on their own. We acknowledge that they have no energy, are fogged, and are often very alone, then over-loading them with lists of things to do in order to get the care they need.
We also act as if everyone who is on facebook or a member of an online support group is computer savvy enough to manage online symptom tracking.
We act as if everyone who buys a book about FMS can actually complete the book...not just read it but fill out the forms, etc!
I say "we" because I did the very same thing. I wrote one heck of a complete guide to documenting FMS for diagnosis, individualized treatment identification, and long-term health management. It was wonderful...unless you had FMS and were being asked to do everything I identified as being necessary! I learned from the years I put into that well-intended but incorrect approach! I learned...I got shot down...and I got discouraged...but...
Here I am in Vicksburg, MS, USA. I am meeting new people, surrounded by an entirely different population of doctors, support people, families, friends...but what I am seeing is EXACTLY the same. How do I live with myself if I remain silent? How do I tell myself that because I do not feel like writing everyday, that is enough of a reason to let myself off the hook? How do I stop pointing out what I know to be flawed in the current approach to helping those with FMS...when I see it running rampant all around me?
Knowing one's strengths...knowing when one is right and speaking up...being straightforward and real...is often seen as arrogant. It can lead to one being unpopular, black-balled, etc. But I have been given the gift of honing in on flaws in systems, and I KNOW FMS, and I KNOW what works for the "everyday person" and what does not...and the only way I am kidding myself...the only way I am irrelevant is if I fail to use my gift.
I knew for a good while before our relocation that it was time for me to move...that I needed a change. Those who know me best were seeing the same thing. Now, we know why. I needed the New Places, New Faces, and New Inspiration!
It is about to "Get REAL up in here" people! Stay tuned to www.MesheaCrysup.com LIVING a fibroLIFE. I have got a LOT to say that needs to be heard...and it WILL make a difference for those of you who have yet to figure out how to manage having FMS!
While dealing with a particularly rough day of LIVING a fibroLIFE, I have found myself smiling...thanking God for "REAL Friends".
It has been a particularly busy time for Darren and I for more than just a few months now. Before that, I was still trying to figure out "fibroLIFE" without my essential, beloved Co-Director, Kathy Keeney. My lack of progress here at LIVING a fibroLIFE has frustrated me to no end, but a couple of days ago it seemed to me that I was finally at a point that I could "get back to work". Of course, "seemed" is the operative word here...and things have not not turned out as they "seemed" they should be able to.
Ah yes, everyone, not just those of us with FMS, faces this: "The best laid plans of mice and men..."
If I were giving counsel to someone else with FMS...or anyone for that matter... in this situation, I would be saying things like, "Prioritize..." , "Don't be afraid to say NO...", etc. It is not that I do not know these things. The problem is practicing what I know...and preach!
What does this have to do with REAL Friends?
I am so very glad you asked!
In this midst of this difficult time, someone I respect and want to be helpful to requested that I write something for a project she is working on. It was not going to be as simple as just sitting down and whipping out a few words. In my case, I was going to have to back up and do some research before I would feel comfortable producing the requested piece.
I stated earlier that I respect this person and want to help them...and that is very true. However, I have never met or even spoken to this person. We met online, through a mutual friend. Regardless of our lack of knowing one another outside of our shared Cyber World, I was honored by her considering me to participate in the project, therefore, I explained that I needed a bit of time to conduct some research and said I would be happy to do so. This person...that I only know online...knows all about LIVING a fibroLIFE and replied, "No. I will not have you taking the time right now to do that."
Wow. If you understand the limitations of having FMS then you also understand that this person chose to be a REAL friend to me. She put my wellbeing above her own needs...and it does not get any more REAL than that!
As many of us with FMS do, on this same day, I shared on facebook that I was feeling very badly but had several things I had to do and many other things I wanted to do. This time I was given counsel by someone I do know outside of Cyber World, but have not actually been around in well over 15 years. It was not a lecture. She simply said, "Prioritize...Needs first, then if you have the energy move on to wants. Hope you feel better soon."
She took the time out of her busy day to remind me of what I preach to everyone else on a daily basis. No judgment...just a gentle nudge into doing what was best for me. A few seconds on a keyboard and a few words sent a message that made such a REAL difference in how I was feeling about the facts of the fibroDAY I was having.
You do not have to have FMS for my point to apply to you. In fact, that is one of the main themes I address in LIVING a fibroLIFE: Having FMS does not make us so very different from those who do not have FMS...really. Also, these examples may seem insignificant...or at least not as significant...to you. After all, they were not big gestures, showy, expensive, or time-intensive: They were far more! They were REAL-life examples of how REAL friends behave...of how we must behave to be a REAL friend...of what REAL friendship looks like in REAL practice.