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.
Recently, while posting pictures of our new home on facebook, a friend, and fellow fibroLIFE Blogger, Kim Warren-Jennings, reminded me to go at a "fibro pace". I appreciated the reminder, although we both know it was a classic case of the "Pot calling Kettle black", for Ms. Kim moved in 2014, and expected to have 3 months of packing all put away in a few days! So, Pot was not just reminding Kettle...Pot was speaking from recent experience, and Kettle is indeed appreciative of her thoughtfulness, encouragement, and understanding!
In truth, the past few weeks have been draining, and today I am taking an "off day", at the advise of my wise Hubby, Darren Crysup, who shares my fibroLIFE, and therefore is greatly affected by my decisions. (Something we must keep in mind when we are doing, over-doing, or even under-doing and not doing! Another blog topic perhaps...?)
Back to taking an "off day"...
Anyone who knows me will know that an "off day" to me does not mean I am doing nothing. Those days are "down days", meaning Fibromyalgia has knocked me down for a bit and I am not able to be up and doing. (Yes, even a Fibromyalgia Patient-Expert has those days...another blog topic...?)
Back to taking an "off day"...
Well, you see how my mind works! I am constantly thinking, hitting on topics to write about, developing ideas in my mind, etc. Also, I hate messes or for things to be left undone. So, taking an "off day", for me, looks something like this:
I have laundry going.
I have taken Cally for a short walk.
I have had my shower, done my hair and make up, etc.
I am writing a blog post.
I will put laundry up later...but that will probably be after a nap, at Cally's insistence, of course. ;-D
It may sound like I am still doing a lot, but it is all slow paced, no stress, etc. I am actually ignoring the harder tasks such as the boxes that surround me, unpacked, the books and files that need organized, and the pictures and wall-hangings that have yet to be placed and hung. Not only am I ignoring them, but I am pretty much OK with doing so...which is very hard for me to believe! It has only taken me 49 years of life to learn that not everything has to be done immediately or perfectly!
I cannot help but wonder how much better my health would be now had I learned to LIVE at a slower pace many years ago. I cannot help but think my FMS might not be as severe had I let go, at least to some degree, of being a perfectionist long before my body and mind lost the ability to be one! I cannot help but wonder how much easier my life...my husband's life, my family's life, my friends' lives...might have been if I had always LIVED a fibro paced life. If I had listened to my body years ago, when I was still just a child...hurting, anxious, stressed, tense, and afraid... how much more LIFE would I have enjoyed by living a fibro paced life...by LIVING at a fibroLIFE pace?
Well, regardless of what I might suppose, there is no going back to do things differently. I can, however, control how I proceed from this day forward. I am thankful for the lessons I have learned, even though they were hard and involved literally collapsing at work, and pushing myself to the point of being unable to even care for myself. I was just existing then; miserable and feeling like a failure. As hard as I had always worked, as much as I had accomplished, and as involved as I was in so many aspects of life, I ended up miserable and just existing.
I am thankful that at least I learned before I was 50 to LIVE at a fibroLIFE pace. I am thankful that, in spite of having FMS, I am happy...with goals, hopes, and dreams...really LIVING...LIVING...EMBRACING my fibroLIFE. My hope is that each of you are doing the same. If not...it is never too late...as long as you are breathing...you can start NOW...and we are here to help you...I am here to help you...for doing just that is one of the best parts of LIVING my fibroLIFE!
Eating Healthy This Holiday Season
By Kathy Keeney (Originally printed in fibroLIFE Ezine November 2010)
Take a tip from the American Diabetes Association ~
They suggest we divide our plate into three sections:
More Eating Healthy this Holiday Season -
It’s the holidays – there are parties and more get- togethers – should you eat salad ALL the time? NO, but, All things in Moderation. Be sensible. Yes, you have your favorite desserts, and you ONLY eat them at Mom’s, Christmas, or Chanukah. I’m not saying don’t indulge the whole holiday season, but be sensible about it. I make hand dipped chocolates for heaven’s sake! But, I also know that I can enjoy a few pieces of candy and be just as happy as when I was a child and was stuffing my face without a care or worry of gaining weight. The best way to keep weight off is to never put it on in the first place.
Ways to avoid excessive calories at holiday events:
A fibro-FRIENDLY Christmas
When you have any chronic illness, holidays are usually difficult. This is especially true with Fibromyalgia (FMS). Chronic illness, again including FMS, is also hard on the wallet, and the holidays are as well! In today’s economy, this is even more so than in years past. With these things in mind, I decided to take a new look at how those with FMS could decrease stress this year. I have combined the considerations of stress, energy, pain, fatigue, expense, and what the holidays…and family and friends…are really all about.
Holidays involve family visits, big dinners and or parties, and gift-giving. As if those things alone are not enough, they do not “just happen” without a lot of prep-time…a lot of energy, thought, work, etc. We want our homes “company-clean” and decorated. We want to serve everyone’s favorite dish. We want to see the look on a loved one’s face when they open their gift and it is just exactly what they wanted! Healthy people are usually worn out pulling all of this off, let alone trying to do it when you have FMS! None-the-less, we who have FMS perhaps want even more than those who are healthy to make the holidays special; extra special because we know our fibro-live imposes upon their lives, making them also fibro-lives. But with FMS, how does one ever pull off the successful holiday we envision?
Well, first of all…we do not. We have to accept that in truth picture-perfect-holidays are just that: pictures! Once we have done that, we set some realistic goals, and with some “out-of- the-gift-box-thinking”, we can achieve them!
What exactly is this “out-of-the-gift-box-thinking”? (Shamelessly, the pun is most certainly intended!) I am suggesting that you combine the chores that need to be done and the gifts that are to be given to create a less expenses and less stressful holiday for all!
Suggest that rather than buying you gifts, your family and friends “do” something for you as their gift this year! Suggestions:
The possibilities are endless and we would love to hear of any you come up with! Also, we want to know how well our ideas work for you! Please share your fibro-FRIENDLY Christmas results and ideas with us after the holidays!
Have a Merry fibro-CHRISTMAS and a Happy, Happy New fibro-YEAR !
Blessings on you and your fibroLIFE!
~Meshea Crysup, Founder/Director of fibroLIFE
Originally published in Oct of 2012.
It is so very good to be back with you! Forgive my absence, but Darren, Cally, and I began the process of relocating to Vicksburg, MS, at the end of October, and as you all know only all too well, there was just no way I could continue to blog and handle the move. We are in our new home now...still surrounded by boxes...but here at last...and I am determined to be back HERE with all of you!
So, fair warning...I'll be showing up FREQUENTLY again!
Good Morning All!
If you have FMS, you understand "Fibro Flares"...they are simply a part of LIVING a fibroLIFE. It is true, we can avoid activities, foods, etc. that we know are triggers for us, but that is not a guarantee that we will not experience an increase in pain, fatigue, mental "fog", or any of the other seemingly endless list of FMS symptoms. This increase in symptoms, to those of you not already in the know is what we mean by a fibro flare.
Sadly, I've been in one of these flares for over a week now, thus I have not been blogging, posting much, etc. I have had to conserve energy for company we had, for taking care of my family, etc. This is a perfect example of how one does go about LIVING a fibroLIFE...one prioritizes. It is not that all of you do not matter to me, for certainly you do! It is just that I can be of no benefit to you if I remain in this flare, so rest has been necessary, PLUS, each of us must put ourselves and our families FIRST in our lives...because really, that is what LIFE is all about...it is WHY we all strive to LIVE.
My actual family...just as it is with you I pray...must come first, but never doubt that all of you are my extended family. I have done my best to keep up a bit of a facebook presence, and will continue to do so, while this flare roars on. Today, however, I will be spending time with my youngest son, Michael, so I may not be around a lot, but just like our old nemesis, the fibro flare, I will be back. Hopefully, unlike when a fibro flare visits, you will be happy for my return however!
I will do my very best to blog tomorrow. If not, I will check in on our facebook page, Fibro Life.
Praying you are flare free!
A new "Trusted Resource" has been added: Meet My "Trusted Resource", and, Proudly, My Friend...Ray Davis!
I am always talking about LIVING, thinking POSITIVELY, taking CONTROL of our thoughts, etc. as KEYS to LIVING a fibroLIFE. I give you suggestions from my personal experiences, but today I am taking you "straight to the horse's mouth", as the old saying goes, and introducing you to one of the best resources I have: Ray Davis and his website, The Affirmation Spot!
Visit his website and/or check out his page, The Affirmations Spot, at our Trusted Resources ~Meshea
Ray Davis, Founder of the Affirmation Spot, is a writer, thinker, and modern-day philosopher committed to helping people create a positive vision for their individual lives and and the future of humanity.
EXCLUSIVELY FOR OUR READERS, A Gift From Ray!
I've set up a $3 coupon on the site for your readers.
If they use " meshea" in the coupon code, they get the first $3 on any order for free. ~Ray
About The Affirmations
We human beings think between 12,000 and 60,000 thoughts per day. Researchers indicate that a very high percentage of these thoughts are negative and a similarly high percentage are the same thoughts we had yesterday.
The principle behind affirmations is simple. Affirmations are a thought replacement tool. They help you become conscious of the thoughts you're thinking and replace habitually negative thoughts with habitually positive ones. Thoughts spark feelings and feelings change the energy of every encounter you have with every situation in your life.
The duel engines of affirmations are repetition and belief. Your negative thoughts have been working on you for a long time and saying or listening to affirmations does not instantly change them. You have to give the positive thoughts time to sink in. The process is very similar to an exercise program. At first the exercise hurts, then it feels good, then it transforms your body. Affirmations do the same for the mind.
Ray created this website in 2007 and began offering downloadable MP3 affirmations, drawing on his 20 years experience in writing, home recording, and using affirmations to work miracles in his own life. Thousands of people around the world have downloaded, used and loved Ray's mp3 affirmations.
From the beginning he had three simple goals:
1) Write powerful affirmations that have a real impact for people.
2) Make the affirmations affordable for everyone.
3) Provide the affirmations in an easy-to-use mp3 format.
- See more at: http://www.theaffirmationspot.com
Well here I am on week two of struggling just to stay awake long enough to get out of bed and awake long enough to eat something and go to the bathroom. My FMS and CFS are roaring loudly. My body is on a 4am to 3pm sleep pattern, if not continuously around the clock.
I never was a day napper, even with the Fibro, unless the CFS kicked in. I would have to take plenty of rest periods and my sleep pattern has always been insane. I normally can just push on but these two weeks have basically shut me down mind, body, and soul.
What do I think caused this????? Back in mid July I made a huge move to the outer area of Nashville, TN, with my daughter who is attending college. Nothing went right about this apartment hunt. Thank God for family. I packed my whole house myself. I helped my family pack the U-Haul. That night my daughter and I cleaned the old rental, including shampooing carpets.
The next morning I'm up at 6 am to drive the three hours to my new place, which was still having carpet installed when we arrived. More stress!!!! So the family goes to eat and I'm stressing out. They come back and it's done and we all unload the U-Haul. I'm finally to the point that I'm carrying boxes with tears rolling down my face. It's finally done. I just ask my dad and brother to please put my adjustable bed together while I am putting my daughter's bed together. We sleep.
The next day, I wake up to boxes on top of boxes and furniture on top of furniture, and in my mind, I have to get this apartment put together in two days or else. After all, that's how I used to work. I'm literally about to kill myself until my precious daughter looks me in the eye and says, "You are trying to undo in two days what it took you three months to pack. Stop!!!!!" But I was on an adrenaline high.
I did slow down some though, but only because there are a few pieces of furniture we need and can't afford yet. So yes, I still have some boxes sitting here, there, and yonder, and I haven't died from them being there yet.
My message to all of you, after all of that, if you are still reading, is: Don't push too hard on your good days or it will catch up with you and you will pay the piper. I know sometimes it can't be helped, but try to pace and take good care of you.
I'm so sick of this bed when my mind has a million things it wants to do. But I abused the ole FMS body and it kicked in the CFS, finally letting me know it needs a long rest.
Blessings and soft hugs❤
So you have Fibromyalgia (FMS) and you think you cannot travel.
This one post cannot possibly provide answers to all of the issues listed above, but there are answers. Rather than focusing on why these issues KEEP you from traveling, let us look at it all a bit differently.
Kim and I grew up in the same small town, went to the same little schools...
both had FMS while we were growing up in the same small town and same little schools...
but we did not LET it show, let alone ever discuss it with one another UNTIL much later in life. I believe she has much to share, and I am thrilled she has agreed to become a fibroLIFE Blogger.
Please click HERE to check out her bio and read her VERY FIRST BLOG!
What Does She Know About Fibromyalgia and Why Should I Spend My Valuable Time at www.MesheaCrysup.com
Having FMS myself, I understand having very limited "good energy". For that reason, I think this is a VERY important question for me to answer. I am going to do so, in part, by sharing a very brief bio with you, which you can also find at About Meshea. It provides a very abbreviated account of my personal and professional experiences. It also provides what the focus of the information you will find here will be. The other bit of information I would like to give you is this: While I will have "Fibromyalgia Basics" here such as "What is Fibromyalgia", you will NOT find me repeating or rehashing information provided by others. I know my strengths and weaknesses, and I have no problem saying, "Go HERE for THIS because they have done a GREAT job with it." (See our page of "Trusted Resources".) In fact, I am all about doing just that because, as I said, I have FMS myself...I understand having very limited "good energy". I will always strive to provide you with or lead you to the BEST FMS info available and I never want a visit to MesheaCrysup.com to be a waste of YOUR VALUABLE TIME!
Meshea's "BRIEF" Bio
Meshea worked as an RN in long term care as a staff nurse, Director of Nursing, staff developer and educator, consultant, and seminar developer, coordinator, and presenter until Fibromyalgia (FMS) finally stopped her in her tracks, literally! Looking back, it is now clear she had FMS since early childhood.
In spite of her medical background…and figuring out for herself that she had Fibromyalgia…it took years for her to get a correct diagnosis of FMS. It then took several more years of trial and error to develop the most beneficial and individualized treatment plan, which is what is required for anyone with FMS to function optimally.
Combining her personal and professional experiences, Meshea developed a program she called fibroLIFE© to effectively managing “fibro” in order to maximize "LIFE". An important aspect of LIVING to her is helping others who have FMS as a Fibromyalgia Patient-Expert, Writer, and Public Speaker.
Currently her focuses are:
Meshea Crysup lives in the first house restored in the Fountain Ave Restoration Area of Paducah, KY, USA, with her husband, Darren, and their furry, canine daughter, Cally.
There are many, many places online to get information about Fibromyalgia (FMS), but how do you know which ones are accurate and which ones are not?
When I decided it was time to return to blogging about FMS, I took some time to evaluate what was already available online. I had kept up with a lot of facebook groups, blogs, and other informational sources from my past, but I did not necessarily scrutinize their content. I sort of "chewed up the meat and spit out the bones", as the old saying goes, in my own mind and went on my way, not paying a lot of attention as to what came from where and such. I have had a lot of practice at this and have been at it for a lot of years now so that works for me, however, this will not work for everyone...especially new-comers... looking for information on FMS .
I also looked at what was available already because I see no need for yet another website or blogger to be re-creating what someone else is already doing VERY WELL. I see a major part of my "job" as searching for "Trusted Fibromyalgia Resources" that already exist and helping to spread the word about them.
I am happy to announce that the "Trusted Resources" page at "MesheaCrysup.com Living a fibroLIFE" is now available. Admittedly, there is not a lot there (as of this moment, 8:55 A.M., 9/9/2014) but I will be adding to it as swiftly as possible. I had NO TROUBLE at all, however, deciding who/what would be
at the top of the page: Celeste Cooper! I will be posting more about her soon, but for now, know this: If Celeste Cooper wrote it, passes it along, or promotes a thought, article, program, etc., about Fibromyalgia (FMS), you most CERTAINLY CAN TRUST it!
The second "Trusted Resource" I have currently listed is Melissa Swanson. I will be posting more about her as well soon, but in the meantime you can find the link to her blog and facebook page on our Trusted Resources page.
While there is certainly much more to come on this page, for now, I hope you will take the time to check these two ladies, and the information they provide, out. If you know someone who needs information about FMS, please pass these ladies' information along to them. After all, this is not a competition to see who can sell more books or have the most blog followers...and I know these ladies feel the same. We want YOU to have the very best information available to help you face LIVING a fibroLIFE. I am proud, honored, and humbled to say these "Trusted Fibromyalgia Resources" are the best place I know to start.
I am sorry to have been silent...I really have wanted to write daily. Not only do I feel I owe to my readers, but I really DO WANT TO WRITE daily. I live a fibroLIFE however, and must prioritize. When I "run out of day" before I write here, I feel like a failure and even question if I should be doing this at all. Yesterday, however, as I was exchanging "good mornings" with a dear friend, I mentioned that I hoped to write that day. His reply was short...but powerful. He simply said, "They need to hear from you." He did not chastise me for not writing daily. He did not tell me that "real bloggers set a schedule and stick to it". He did not tell me that what I say is of profound importance. He simply said, "They need to hear from you." I was cool and said, "Awe thanks!" but, in truth, alone on my sofa, I cried as I texted those words.
This same friend also told me a few days ago that all he knew about FMS was what I had written and he had read here. That statement made me realize that I had pages started but not yet completed and published which really needed to be completed... if I was going to keep blogging.
So...because of a friend...
Because of a friend kindly saying, in his own way, that what I was doing mattered...
You bet I am going to keep blogging! I am going to get better about reaching out to you all daily as well! I have also completed the page I had started on "What is Fibromyalgia?". Please click the link, give it a look, and pass it along to anyone you think might benefit from it
Because of a friend...y'all are stuck with me!
Thank you, Murph, my friend!
I had planned to write about what "LIVING" means to YOU this week...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 have found myself unable to do so.
You see, 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. For you see, 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"!
What exactly do I mean when I say I am "LIVING" a fibroLIFE?
I get asked that a lot, but not everyone is asking me for the same reason or looking for the same type of answer. When people who do NOT have Fibromyalgia (FMS) ask me, they are asking an entirely different question that what those who DO have FMS are asking.
People who do NOT have FMS are actually not asking a question...but rather they are making a statement. Basically, most of the time what they want to say is, "Uh yeah...you are LIVING and you have FMS...I do not see what the big deal is about that!" They also often want to...and sometimes do...follow that with, "You do not look sick to me!"
People who DO have FMS are asking a question, but often it is rhetorical. Either way, their main point is that FMS keeps them from living the life they used to LIVE, so much so that they do not really feel like they are LIVING anymore.
So for those who do NOT have FMS, I have to first make them understand that no one can look at someone and tell that they have FMS. This is not any different than someone who has high blood pressure, diabetes, or a number of other serious medical conditions. Getting them to accept that fact however is actually my challenge. The difficulty actually lies in the fact that our symptoms vary so much from moment to moment, hour to hour, and day by day. In their mind, it often seems we are only feeling badly when it is convenient for us to. The fact that most of us with FMS require pain medications and many can not work or do many of the things they used to do seem to fuel this notion. When they become aware of the fact that there is not a blood test or some sort of scan to definitively diagnosis FMS, the word hypochondriac starts coming to mind as well. Because they are often basing these notions on their own observations, it can be very difficult to change their minds. What you are saying just does not line up with what they are seeing, which stacks the deck against what I have to say before I ever get a chance to speak.
For those who do have FMS, I have a different, but perhaps even more difficult challenge. I have to convince someone who often does not feel like getting out of bed, perhaps has lost everything because they can no longer work, and who has likely had doctor after doctor tell them that they cannot find anything wrong with them that, in spite of this, they DO STILL HAVE A LIFE and YES, THEY CAN LIVE THAT LIFE. It is not mere observations I am up against; it is their own personal experiences, feelings, and their current status that I seem to be flat out contradicting! Basically...and understandably...to them it seems I am agreeing with all they say they feel, but still telling them they are wrong. More than once, this type of conversation has gotten really ugly really quickly. I have actually had someone storm out of a workshop, thankfully without saying all I know she was wanting to say to me!
The truth is, I understand both points of view...and I do not blame either group for having the convictions they have. Actually, if either type of person is asking me about FMS at all, I am thankful; at least they have given me an opening...a place to start. Far too often, people from both sides only want to hear what they have already concluded for themselves.
Making it even more difficult, I really can not answer either side of the issue with a couple of sentences. FMS is far too complicated for that, even when I am starting with someone who does NOT already have preconceived notions, let alone when they do have. Those who do NOT have FMS usually are not looking for a mini-seminar, which is what it takes to explain it adequately, and those who DO have FMS do not feel like listening to a mini-seminar on something they already know about all to well because they are dealing with it themselves every day!
Because of this, over the years I have tried many different tactics, different variations of replies, etc. To be honest, I am still working on finding a concise reply for either side of the question. Even more honestly, that is ok...because USUALLY, if I am approached by either someone who does or does not have FMS, they are not really ready for my answer. What they really need is for someone they perceive as "knowing about this stuff" to listen to them. When I do that...just listen...I find out exactly where they are in their journey in learning about FMS, I gain their confidence, and I know where to begin and how to proceed with the discussion.
I know: I have written a lot and you still do not have an answer. That is because, as badly as we may all desire it, there is not a simple response to that question due to the very nature of FMS itself and the variety of ways it is perceived. All I can do here is offer you a brief statement that applies to my personal journey with FMS at this time. When I say I am "LIVING a fibroLIFE", I mean that each day I am doing my best to apply what I have learned along the way to be as healthy as I can be, in spite of having FMS. Each day, I am doing my best to LIVE the LIFE I want to have, as much as is possible.
I am sure it is not the same as it would be if I did not have FMS...but do the people with high blood pressure, diabetes, etc. LIVE exactly the same LIFE they would have lived without those conditions? Probably not...but who can say?
My point, which is actually basic, but often not applied when it applies to ourselves, is this:
We all have ideas, dreams, ambitions, goals...but none of us really knows what tomorrow holds. For each of us, SOMETHING will come along from time to time and alter our course. True, for some the alteration may appear to be less drastic than it is for someone with FMS...
is not that just OUR preconceived notion of someone else's reality?
For that question, I do have a concise reply:
YES, it is!
Happy Friday All!
Just a quick note to let you know I have made progress!
No new informative blog post though...
I had hoped to write a wonderful article for you today, but I had a horrible night of "If I were a horse..." pain. The pain is better today, but I have had a horrible headache all day. Therefore, I decided it was best for all of us...you and me... if I just stuck to writing this little update!
I pray your weekend is low-pain, high-energy, fog-free, and blessed!
Hello and welcome back!
Resuming my past blogging habits has been difficult. More precisely, I have failed horribly at it so far and I am very frustrated! Yes, even I...Mrs. LIVE your fibroLIFE herself...get frustrated. In fact, I could go off on a huge rant just listing my frustrations, but that is not my goal today. Instead, I wanted to share with you why this blog's launching is going so poorly, how I feel about it...FRUSTRATED...and, more importantly, how I am facing, coping, and working through...and past...this particular set of fibroLIFE frustrations.
I could honestly simply say I have not felt well, thus I have not been writing...it would be true. My pain has been up. I am very fatigued, having to nap three or four hours a day. My head hurts. It is difficult to think...to focus... and when I can, I have other responsibilities I must place before blogging.
Realistically, this list is certainly long enough to justify my lack of progress. In fact, if one of you were telling me this about your own life, I would tell you to give yourself a break...cut yourself some honestly well-deserved slack...after all, you have FMS! I would assure you that you should not be frustrated with yourself...that doing so would be a waste of your "good" energy...and I would be advising you correctly!
So why then am I frustrated with myself if I believe my above statements are so correct?
I am frustrated because, while writing well has been beyond my grasp most of the time of late, there are plenty of other things I have been capable of doing to develop my new site and blog BUT I have NOT been doing them!
I could have been...and should have been...approaching guest bloggers, jotting down all of the many blogging ideas I have had, ordering my new business cards, etc. Now, granted, I would have had to do these things as my health actually allowed and within the structure of my priorities. I certainly could not have just sat down and accomplished these things bam, bam, bam, but I could have been doing some of these things, a little at a time, some of the time! I went against one of my own CORE beliefs:
"Start where you are....
Use what you have...
Do what you can."
I am sorry for having failed all of you, angry for having failed myself, and frustrated that I was so "lost in the fog", pun intended, that I failed to recognize, acknowledge and correct the situation sooner!
So, what do I do now?
I do NOT compound the situation by lingering in my frustrations!
I do NOT kick myself and decide that I must not be "able" to do this after all!
I do NOT hide or withdraw from embarrassment or shame!
I pick myself up, dust myself off, get back on track, and LIVE my fibroLIFE to the fullest, which for me means helping others who have the same struggles and frustrations!
I start where I am...use what I have...and do what I can!
Whatever it is that has frustrated you...interfered with you LIVING YOUR fibroLIFE...and no matter how long it has done so...you can do the same! If I can do it, anyone can!
I believe in YOU!
Blessings as you LIVE YOUR fibroLIFE!
"Start where you are. Use what you have. Do what you can."
I have been agonizing lately about how to pick up the pieces of my online writing, blogging, etc., and move on. Without it, I feel sure I am not doing my life's calling, but...(Such a small, yet powerful word...)
I have not felt well. Pain has been up. Fatigue has been up. Now fibro-fog and anxiety are up. Then, today, as I was trying to work through a small, should-be-simple, list of things to do, I found myself overwhelmed and in tears...until I looked at my facebook page...and...well...you be the judge...
facebook asks, "What's on your mind?"
Well, funny they should ask...
My mind is on my mind. Perhaps I should say my fibro-foggy mind is on my mind. (Note: I had to re-type "foggy" three times...kept mixing up the letters...and did it again in this sentence...)
My pain isn't elevated...hasn't been the past two days which is odd given the rain that moved in. (Hubby asked me how the rain happened yesterday morning I wasn't prepared for it, lol!) But...oh how the fog and anxiety are making up for the "normal" pain level!
I write OFTEN, and re-post OFTEN, about CHOOSING to be happy, polite, positive, etc. I mean it, believe it, and practice it to the best of my ability. But just as CHOOSING to be positive does not PREVENT or STOP the pain and fatigue of FMS, it also can't prevent or stop the mental fog and anxiety.
Think of it this way...
The body that does not make, or make enough, insulin requires insulin replacement. One can be as positive as one can imagine and STILL that does not change the need for insulin BECAUSE the problem is not a psychological one, but rather, a PHYSIOLOGICAL one.
Now, apply that to the fog and anxiety of FMS...because it is TRUE!
I can't use positive thinking to create the chemicals my brain needs to process and/or process correctly. Unfortunately, meds can only do so much for it as well. The fog of FMS...our anxiety issues, confusion, being over-whelmed, etc. are NOT "mental" or "psychological" issues...but rather, PHYSIOLOGICAL ones! I can't just "take a pill" or "think myself" out of this fibro-funk of fog, anxiety, and information overload type of state. No one with FMS can do that.
That does not mean that KEEPING A POSITIVE FRAME OF MIND will not HELP. In fact, without a positive attitude, right now I'd just "shut down" altogether. I'd drown in the embarrassment I feel, the lack of control, the helplessness, etc. BUT NO...I refuse to do that! You see, I cannot use positive thinking to change a "real, existing condition or circumstance" but I CAN, WILL, and MUST CHOOSE my REACTION to this very "real, existing condition and circumstance"! What I CAN, WILL, and MUST do is maintain a POSITIVE attitude to get me through it!
I hope my sharing this private, invisible battle helps someone in some way. It's why I do it. Not for attention, sympathy, etc., but to increase public awareness for others with and without FMS. If this helps JUST ONE person, then I've taken my burden and used it for good. That's why I write, talk, text, tweet, and fb about FMS...my own personal battles with FMS.
Bless you all...