Not All Butterflies Are the Same
I read and reposted an excellent article this weekend on facebook. While I reposted it for its important content, I saved it because it echoed the very thing that drives me:
Not All Butterflies Are the Same.
Not all of us with Fibromyalgia (FMS) are the same.
Our FMS varies, our personalities vary, our preferences vary, the circumstances of our lives certainly vary-- thus what we are looking for to help us varies. We certainly all need the most current, accurate, helpful, etc. information, but the form that information comes in must be varied. We certainly all need tips, tools, worksheets, etc. to assist us, but their formats must be varied.
This is not a new concept to me--I found it to be true very early in my quest to help others with FMS. I adjusted my approach to dealing with others with FMS. I changed how I wrote. I changed the type of tools I put together. I changed the type of meetings I had and talks I gave.
It is not a new concept to those of us who are blogging, speaking about, writing about, and increasing awareness about FMS--and that is why there are so many of us yet most of us are still able to develop a following.
I am not necessarily talking about those who are seeking treatment alternatives other than those offered by main-stream medicine, although this certainly applies to them as well.
I not only understand and empathize with these people, but I have a name for what they are seeking: fibroBASICS. I even have a plan for how to provide it. I have a plan for how to provide what they are looking for beyond the first few steps, but also what they will need way down the line. My plan even goes beyond what other Butterflies need...
But I have FMS--I cannot implement that plan on my own.
The good news is, the internet is full of other people--voices--like mine, who also recognize this need. I call these fibroVOICES. I see that our collective voices can be used to drive more than the current goals in the "Fibro-world". I have a plan to bring our voices together, to be heard as one voice--fibroVOICE to meet the needs identified above.
I want to be clear--I am not criticizing any of the existing organizations or their goals. I am not suggesting shortcomings in their leadership or any failures of any kind. Their work has been invaluable and will continue to be so. Because of it, all of our fibroVOICES exist. These established organizations need to continue down their current paths, for the benefit of all of those with FMS. But time and experience has revealed a need to build upon their work. The existence of the variations in Butterflies has created the need to compliment their work.
While these organizations, writers, bloggers, etc. are doing invaluable work, their focus is not the same as mine. They create tools, workbooks, guides, worksheets, etc. but they do not meet the needs of the Butterflies I am talking about. Their focus is scholarly, research-driven, awareness-driven and their items reflect that. The Butterflies I am talking about are overwhelmed by these. There is nothing wrong with the items--but there are Butterflies with different needs.
If you are one of the Butterflies who recognizes this need as well, please contact me. I am looking for like-minded Butterflies--and even non-Butterflies (non-fibro people) to focus on building upon and complimenting the existing works and organizations. I want to combine our fibroVOICES --VOICES of all kinds such as nutrition-centered, natural supplement-centered, alternative treatment-centered, conventional treatment-centered--into a stronger, goal-centered, coordinated fibroVOICE.
To clarify on "like-minded", I will spell out more to-the-point what I am thinking.
These are big goals, and again, I have FMS--I cannot accomplish them alone. However, I know there are others out there--other fibroVOICES--and I would like to hear from you. I want to form a team--fibroVOICE.
I would also love to hear from those of you who can relate to what I have said here. I would love to hear from you if you have been looking for what I am calling fibroBASICS. I would love to hear from you if the goals I have set make sense to you.
My email is firstname.lastname@example.org
Blessings to all Butterflies, of all varieties!
LIVE your fibroLIFE to the FULLEST!
I have read many articles in the past which actually blame FMS on over-use of antibiotics, so there is no doubt, if I looked, I could find articles that would support that fibro flares can be brought on by antibiotic use. Furthermore, there is no doubt that we all need to be as educated as we can be regarding FMS, but in the end, how much does it matter?
If you are not inclined to dig that deeply into the existing research, does that mean you are not doing a good job of managing your FMS? If you do not feel well enough to read an article on the subject, should you force yourself to do so anyway?
I do not know if it is easier for you, but when I am not feeling well, the basics are certainly enough for me! In fact, I run into people all the time who say they do not want to hear all the science, because it overwhelms them. That is why I have come to advocate that we create plenty of information and tools that deal with just the basics—of course, I call them fibroBASICS.
First of all, fibroBASICS to me means just what it sounds like: what are the usual, every day things I have to do to manage FMS. Among “my bag of basics” is making ONE change at a time. I know that if I make more than one change, if I go into a flare, I have no way of identifying which change caused, or at least contributed to, the flare.
So, going back to my fibroBASICS, I know that recently the only change I have made in medications or supplements is the addition of an antibiotic for a Urinary Tract Infection (UTI). Granted, the UTI alone could have caused the flare, but I had been battling the UTI for a bit before I started the antibiotic. The UTI alone was causing me not to feel as well as usual, which I had duly noted.
Next came my first antibiotic. The first antibiotic did not increase how badly I was feeling from the level I had noted from just the UTI. When I had my follow-up appointment, however, the UTI was not entirely gone. That is when my doctor decided to go with a different antibiotic.
Within an hour or so of taking the new antibiotic, my pain was through the roof! The muscles in my hands, arms, and legs began pulling, hurting, and burning so badly—it was definitely a significant increase in pain! Of course, this could have been a fluke, so I reserved judgement, until I took the second scheduled dose—then I was sure! Every time I take a dose of this particular antibiotic, I have had the exact same increase in pain.
The increase of pain of course has increased my overall stress, made me more tense, and has caused me to not rest as well as usual. These three factors equal a Fibro Flare for me, every time.
I want to stress a few points:
· First of all, you cannot know what causes a flare if you make more than ONE change at a time.
· Secondly, similar items may cause you to react differently, as demonstrated by the first antibiotic not causing an increase in by FMS pain but the second one certainly did.
· Thirdly, regardless of the “science” behind it or not behind it, for me I have identified that this antibiotic is an issue. After all, we know that FMS varies from person to person, thus the causes of flares can vary from person to person.
So, can antibiotics cause Fibro Flares?
Without getting into the science behind it, I have identified yes, they can—but they do not always do so.
More importantly for me, I have identified that one particular antibiotic certainly causes an increase in my FMS pain.
I still advocate learning as much as you can about FMS, but I do understand how badly FMS makes you feel and there is a lot of information out there to cover, some of it even conflicting. So, I understand if you do not pour over all the research and updates.
I do want to stress, however, regardless of how much you read or do not read about FMS, always stick to your fibroBASICS. Make one change at a time so you can identify what causes your Fibro Flares. Hopefully, this will help you avoid them in the future.
There are a few people in the Fibro World that I trust implicitly, and as I have often said, Celeste Cooper is one of them. Yesterday she sent me the link to her latest article regarding the state of affairs for those requiring pain medication. As with anything she puts out, I need not add to it in any way. I do want to point out, however, that it is far more than just excellent information. It is actually a list of things you can do to help you with your situation. You could not purchase better advice from a more informed person. Here is the link: Guidelines for Pain Warriors
I do want to share my own feelings on this issue:
· I am appalled that pain management has essentially been set back by 20 years or more by the current rules.
· I am appalled that the practice of medicine has gone from the doctor’s office to the legislature’s unqualified opinions.
· I am appalled that Celeste has needed to create the list in her most recent post.
· And of course I am appalled, but also so very sorry and angry, that this is yet another burden that those with FMS—all with chronic pain actually—are having to take upon themselves.
Thank you Celeste Cooper for stepping up yet again, and personally sacrificing your time to put this together for those in need.
LIVE your fibroLIFE to the fullest!
The Day is Mine
Book Review: TAKE BACK YOUR LIFE Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse, Fibromyalgia Coach
TAKE BACK YOUR LIFE
Find Hope and Freedom from
Fibromyalgia Symptoms and Pain
by Tami Stackelhouse, Fibromyalgia Coach
I have been familiar with Tami Stackelhouse, via her online presence, for several years. I am very happy to see her many accomplishments and not at all surprised that she came up on my radar as I began researching the latest books to help those with Fibromyalgia (FMS).
One of the main things I most liked about this particular book is that it does not bombard the reader with an explanation of FMS that is so in depth that one needs a healthcare background to understand it. In fact, I found that she understands what I have been shouting for years now to anyone who will listen: We who are blogging, writing books, etc. are overwhelming people who are looking for help with their FMS and the reason they are looking for help is because they are already overwhelmed because they have FMS! I was thrilled to see that Tami acknowledges the need to have a basic understanding of FMS, which she explains very well, as well as acknowledging that readers are not reading her book to become an expert on the medical-end of FMS but to find help in getting better!
Will this book help you find help in getting better?
Well, while this goes without saying, I feel I must say that if you are looking for the proverbial “magic beans”, they are not here—but they are not ever going to be found anywhere! No matter what book you read, doctor you see, treatment you try, etc., you will not find that sort of easy, magical answer. That said...
Tami does a fantastic job of balancing hope and realistic expectations in this book. She fully explains that many factors determine just how much you can improve, including how bad you are to begin with, how long you have been as bad as you are, and how much effort you put into getting better. While she does emphasize the “how much effort” aspect, she does not do so in a condescending way, making you feel guilty if you do not improve to the same level she has, so do not shy away of this book for that reason.
Tami has organized the book well, comprehensively covering the identified goal while keeping the book relatively short, given the vastness of the subject. She covers traditional medicine as well as alternative medicine, and goes above and beyond providing links to worksheets or tools she has created to help you with the actions she suggests you take, and much more.
Most effective to me, however, is her ability to use examples from everyday life to explain her points. These comparisons, or metaphors, stick with you, aiding in remembering what she has told you, keeping it straight, and applying it to your life. This method makes it an amazingly fibro-user-friendly self-help book. Again, she “gets” that readers are already overwhelmed and have bought the book for help. This book, if utilized as intended, certainly delivers.
On my “Fibromyalgia Made Simple” scale, I give this book a 10!
Tami Stackelhouse encourages hope and healing as a coach, author, and founder of the International Fibromyalgia Coaching Ins...titute. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style help women with fibromyalgia take back control of their lives.
Healthline named Tami’s blog as one of the "15 Best Fibromyalgia Blogs of 2015" for its quality and contribution to the fibromyalgia community. Tami is also the author of the international best-seller "Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain."
Visit Tami's personal blog at www.MyRestoredHealth.com or the Institute at www.FibromyalgiaCoachingInstitute.com
I remember being a pre-teen and experiencing horrible pain “down there” that I really did not know how to describe. That did not matter, however, because I was not going to tell anyone about it—ever! I had never heard anyone else talk about pain “down there” unless they were talking about “those women”—you know, the ones who did “bad things” and did not “take care of themselves”.
Now I was certainly not brought up in a house where talking about “down there” or sex was taboo, but regardless, my lips were sealed—until I was in my forties! Even then, I did not talk about it. Instead, I wrote about it—in my fibroLIFE Daily blog.
Fibro Secret three for me: Vulvodynia
Once again, I was hurting in a place and in a way that I was just not comfortable telling anyone, but I was determined to have some answers, so I turned to the only friend I could share such a secret with: Google. I entered the phrase “vulvar pain”, Google did what Google does, and once again Google showed me that I was not crazy and I was not alone. I was one of the unlucky ones experiencing Vulvodynia.
Excerpt Below From www.mayoclinic.com
Vulvodynia (vul-voe-DIN-e-uh) is chronic pain in the area around the opening of your vagina (vulva) for which there is no identifiable cause. The pain, burning or irritation associated with vulvodynia may make you so uncomfortable that sitting for long periods or having sex becomes unthinkable. The condition can go on for months or years.
If you have vulvodynia, don't let the absence of visible signs or embarrassment about discussing the symptoms keep you from seeking help. Treatment options are available to lessen your pain and discomfort.
The main vulvodynia symptom is pain in your genital area, which can be characterized by:
The pain you experience may be constant or occasional and can last for months or even years, but it can vanish as suddenly as it started. You may feel the pain in your entire vulvar area (generalized), or it may be localized to a certain area, such as the opening of your vagina
I had certainly learned about Vulvodynia in nursing school, but all I can imagine is I had not had any symptoms for a while at that time so I did not put two and two together. In fact, I do not think I ever came across the term again until Google showed me. Also, obviously the symptoms listed could be from other things, such as a Urinary Tract Infection, a Yeast Infection, etc. I had always spoken up when I felt the symptoms fit a UTI, and once I was older, I had sought care also when the symptoms fit a Yeast Infection.
Rarely did I actually have a UTI, however. Nor do I ever recall being diagnosed with and/or treated for an actual Yeast Infection. I do know I was given antibiotics for a UTI several times since obviously “something was going on” in spite of the negative test results. As I got older and had to see the doctor about so many symptoms which, once I was diagnosed, almost always ended up being attributed to my Fibromyalgia, I just dealt with the symptoms myself rather than discuss yet another thing with the doctor.
Vulvodynia, however, is not always as simple as UTI-type symptoms, and at times it certainly was not for me. I would have times, in public, such as when giving a lecture or talking to my mother-in-law, when suddenly I would have a sharp, spasmodic, burning pain just hit me “down there” from out of the blue. Over the years, I have become pretty good at not showing just how much pain I am experiencing, but I have never learned to totally cover this one up. When whoever I was with would see the look on my face and say, “Oh my, are you okay? What happened?” I would sort of smile and laugh it off with something like, “Oh just one of the many odd fibro-spasms I have to live with.” Then I would find an excuse to be by myself to deal with the pain as quickly as possible without being too obvious that the pain was “down there”. That is the kind of day I was having when I finally turned to my friend Google.
In the years since that day, my friend Google and I check out the phrase “Fibromyalgia and Vulvodynia” every so often. Each time, we come across more and more information like the following excerpts:
One of the most painful effects that sometimes happens in women who have fibromyalgia is a disorder known as vulvodynia.
Women with vulvodynia are 2 to 3 times more likely than other women to suffer from other chronic pain conditions, such as IC, IBS, or fibromyalgia, according to results from a meta-analysis of studies pertaining to that issue, published in the July issue of Obstetrics & Gynecology
The examples could go on and on, but you get the picture: More and more, Vulvodynia is being linked with Fibromyalgia. Apparently, more and more women are speaking up about this Fibro Secret of having pain “down there”. I am glad to be one of them, especially if it will help someone else. But for those of you still keeping the secret, I do not want you to feel badly. I wrote about this for the first time probably four years ago. I said the word out loud in a conversation with my husband for the very first time just this week. I understand how hard it can be to share your Fibro Secrets, but I know that if you really need to, you can do it. Sharing an article like this or information from online or a pamphlet might be a good way to start.
Several years back, I started noticing the sounds of music when I was putting my make-up on. I felt silly when it suddenly occurred to me that it was coming for the upstairs apartment we were renting out at the time. Our young tenant and friend loved his loud music. Relieved that I was not hearing things, I gave it no other thought--until the apartment was empty but I was still hearing music.
A very close family member is schizophrenic, so you can imagine what I immediately feared: I was truly scared--scared silent! Most of my life I knew I was not well, yet I was in my thirties before finally being diagnosed with Fibromyalgia. I knew the, "This one's problems are all in her head look..." all too well. Those days were finally, mostly, behind me and I was determined to keep it that way, so I remained silent--but the music did not.
I continued to hear the music almost every time I put on my make-up. I was also hearing it when I would try to go to sleep as well as when I was trying to concentrate on what people were saying to me or when trying to focus on television or movie dialogue. I was also no longer always standing in the same place when I would hear the music. It was playing in my head anytime and anywhere it pleased. Sometimes I could identify a song, other times just certain instruments. There were also times when the music would be just low enough that I could almost make out what it was, but not quite. That was especially frustrating for me.
One especially frustrating morning, I decided to take a chance. I Googled "I am hearing music when none to be heard." I am not sure what I expected exactly, but I was pretty sure it was going to involved words like mental, crazy, etc. Thankfully, I was wrong! Instead the word that came up was familiar to me but not in the vein I had expected. It was Tinnitus! "Musical Tinnitus" to be exact!
I had suffered from Tinnitus my whole life but I only knew it as ringing in my ears. I was aware that some people heard roaring, buzzing, or even whistling, but for me, it had always been just a ringing. In fact, it was rare if I did not have ringing in my hears at one degree of loudness or another. I had been told that part of it was the medications I took, but since the Tinnitus came before the meds, it was mostly identified as part of my Fibromyalgia. In fact, some statistics say as many as 75% of those with FMS also have Tinnitus.
Relieved, and with a hard copy of the information in hand, I finally told one of my doctors what I was experiencing. Thankfully we have a solid, mutually respectful relationship because the glance he gave me over the spectacles placed lowly on his nose was speculative, to say the least. "I have never heard of Musical Tinnitus!" he said. Laughing, I said that if I had not found many legitimate, reputable articles about many other people suffering from it, he still would not have heard of it--at least, not from me!
Several years have passed since my big reveal, and I have met several other people who also are hearing music where there is none to be heard. I have even had discussions about it with a couple of specialists, and they were unaware that Tinnitus was so prevalent in those with FMS. Proudly, I told them that my life's motto is, "If you're gonna be a bear, be a grizzly!" therefore, I did not just hear ringing, buzzing, or roaring! No, I had a band in my head--sometimes even a whole orchestra-- and most of the time I enjoyed their musical selections! They laughed, which is what I intended. Yet again, I have found that my sense of humor is my best coping mechanism when it comes to LIVING my fibroLIFE. I am especially glad--and relieved--that I am able to laugh about this particular Fibro Secret!
Recently I was asked to discuss the nuisances of having Fibromyalgia that one would not necessarily find in a book, research writings, etc. As our discussion of FMS moved along, this person asked to just speak on the phone or do a live web chat. At that moment, what this person was seeking became perfectly clear to me: Fibro Secrets.
What are Fibro Secrets?
Those of us with Fibromyalgia are indeed a quirky bunch. We deal with symptoms and issues we are hesitant to even share with one another, let alone doctors, researchers, etc. After all, they seem to struggle just accepting our pain, fatigue, mental fogginess, and mood symptoms. If we talk about much more than those issues, we fear losing credibility. Thus, there exists our Fibro Secrets. Every time I have opened up about a few of my own, I have had multiple people tell me how relieved they are to know that they are not the only one!
What are these Fibro Secrets?
There are several, so I am going to make this a series of blogs in which I share my "Big Three". I call them that because of how difficult they were to ever discuss with anyone and/or because of how many people who I have told that have basically replied with, "Well, that is just nuts!"
Meshea's Fibro Secret One: I hate talking on the phone!
Also taking the award for The Most Eye Rolls Ever, this is my best known Fibro Secret. In fact it is so well known that to still call it a secret is very misleading. I continue to do so because I know many others are still hiding how they really feel about talking on phones. At nearly every conferences or fibroLIFE event I have attended, I saw the proverbial weight of the world seemingly lift off the shoulders of several around me when I have said, "And I do not talk on the phone!"
Immediately, I hear, "It is not just me?" or "My family thinks I am nuts when I tell them this!" I laugh and reply, if someone I know well sees my name come up when their phone rings, they do not bother with "Hello". Instead, they answer the call with, "What's wrong?" I always here a chorus of "Me too! Me too!"
Next, I am always asked why I think we are like this. I can only answer for myself. For me, talking on the phone is exhausting. I have to put energy into sounding like my usual, perky self--of being "on". Texting and emails do not require this surge of my limited energy. Plus, if my words come out wrong, backwards, or if I have to pause to even find them, texting and email does not give that away either.
I talk to my boys, my husband's children, and my husband every time they call and I actually will call them on my own. I answer most calls from Momma, Daddy, and my in-laws. If I am not up to talking, I call them back as soon as I am, and they are very aware of this. I also call them sometimes on my own. I have some other people that simply do not text or do email that I will answer the phone for as well. When business absolutely requires it, I do my best to handle the calls. But everyone else who knows me knows that if I call them, I am putting forth a special effort. It may take me a week to find a time that I feel well enough to call for a doctor's appointment. Sometimes I am not sure which is worse: when the power goes off or the phone call I have to make to report it!
The things I must do each day exacerbate my symptoms and wear me out enough. I do not like being even more tired, having more anxiety, and thus more pain and fogginess over talking on the phone when there are perfectly good alternatives. For those who do not have FMS, I certainly realize this sounds ridiculous. That does not change my reality, however, therefore, for many years this was one of my Fibro Secrets. I now discuss if openly because I have seen how much I have helped others in doing so.
Fibro-fog, in its every varying degrees, comes and goes as it pleases for most of us. Some times we are "clear" enough to function like the rest of the world, other times mildly foggy but functional, sometimes very foggy, and then there are the times when we are totally fogged in! Adding to the frustration is the fact that stress makes it worse, thus usually when we need to be at our best we almost destined not to be, to one degree or another. At these times, an old phrase with a bit of a twist added applies: "I can't see the forest for the trees...and the Fog!"
One of the things I have found that bothers me most is clutter! My foggy mind recognizes what each pile, stack, etc., represents, but I cannot just pick one and work on it. It always ends one of two ways. I may bounce from one pile to the next, only adding to my fogginess and decreasing my progress or stopping it altogether. Or, may I find myself so overwhelmed that I just walk away, certainly accomplishing nothing. Either way quickly diminishes my self-esteem. The next day, there are usually a few more piles or stacks, the cycle repeats, my self-esteem takes another dip: Another Fibromyalgia-induced endless cycle!
I have found that my corkboard approach helps with this as well!
This method helps in several ways.
Oh my goodness, what a fun vacation we had! Oh, y'all do know that we took that picture at one of those "Old Timey Picture" places, right? (Momma insists I point that out to everyone!) But if having fun, laughing, and making the most of a few days away were a crime, we would have plead GUILTY as charged, accepted a LIFE sentence in the Smokey's, and they could have thrown away the key!
Yes, that is me holding the Jack Daniel's bottle and yes, it is empty. They handed it to me that way--really. Standing in the middle is my friend, former boss, and the woman who made my life as a long-term care consultant possible, Martha Workman. Kneeling in front of her is Momma, who raised me to believe I could do anything I put my mind too! The other lady standing is my friend, Kim Steen, relator extraordinaire, who made both our move to Vicksburg and our feeling at home here possible! More than that, however...
Kim also basically single-handedly made my vacation a success! I cannot thank her enough for doing all the driving from Vicksburg to the Smokey's and back! If I had been clear-headed enough to be safe behind the wheel that long, I would not have been able to move the next day, or maybe even the next! I may have not recovered sufficiently until it was literally time to drive back! I certainly owe the success of this trip to her! She is such a good friend, she even let me sleep and did not tease me about my snoring and moaning in pain...very much anyway. We stopped as often as needed, just as I wrote about before. We remained hydrated, kept our muscles stretched, and utilized the heated seats. We also laughed a great deal which probably helped as much if not more than the other things combined!
While in the Smokey's, Martha was kind enough to do the driving, giving Kim a much needed break. Again, we did "all the right things", including the laughing, and managed to do a lot of the things we were hoping to do.
When walking around, touring, etc. we also heeded commonsense. One tour involved a trek up a third flight of stairs. A few of us--I will let you figure out which ones-- knew we needed to skip that, and so we did. One garden we were touring had areas that were not really much to see the time of year we were there, so we skipped them. One location had several parts to it, so we prioritized and used our energy for the parts we most wanted to see. No one pressured anyone to do more than they could or should, there was no criticism or shaming, and we all felt entirely comfortable communicating our needs to one another. By being honest up front about what to expect from one another, our trip was very pleasant, relaxing, calming, and fun!
For those of you who are still skeptical about vacationing, I want to let you know that I have gone on trips very much like this one when I was much worse. I visited Gettysburg and went into such a flare that I had to remain in the car while the others took a closer look at tourist sites. I have agreed to being in a wheelchair on trips to avoid fatiguing myself beyond the point of being able to stay with those who were vacationing with me. I have gone to my room many times to rest, catching up with my group later. Cruises make this especially convenient and doable. So, please know, if you will communicate up front, openly and honestly with who you are going to travel with, plan well including the time and opportunities to rest, and commit to being flexible as well as agreeable with one another, vacationing really is possible, even if you end up in a flare.
I hope some of you will share your vacationing experiences with us here, including your tips, lessons learned, future goals, and lots of pictures! I am very anxious to read about them and see them, and with your permission, share them with our readers! Also, if you want to plan a trip but are having some problems, contact me and I will try to help you figure it out! I love planning--and taking--vacations! I want you to feel the same way about them, in spite of LIVING a fibroLIFE!
I am going to close with more pictures from our trip. I call this grouping "Mountains, Bigfoot, and Bears, Oh My!"
And The Fog Goes On...
And The Fog Goes On…
I struggled giving today’s post a title, but then I have struggled with everything, for days now. Yes, it is the dreaded Fibro Fog. Not as fun as “The Beat” but yes, it does “Go on…and on and on and on….”
Quickly for those who do not know, Fibro Fog is what those of us with Fibromyalgia experience when we literally cannot think clearly. Thoughts get garbled up, we cannot focus, we cannot find words, we say words backwards, we are not safe to drive, we cannot accurately manage a checkbook, and without spell check, we could not type blog posts, I assure you! Spell check cannot make this post make sense, however, but I will do my best, but you should know, “The Fog is thick with this one…” I am sorry, but when the Fog is bad, my humor is my escape, as usual!
In spite of my foggy state of mind, I do know I was blogging on taking a vacation even though you have Fibromyalgia (FMS). In a way, this is actually a continuation of that. You see, vacations, no matter how well planned, are very draining on those of us with FMS, often leading to Fibro Flares, and for most of us, increased Fibro Fog are a part of our flares. So, the state I am currently in is related to the vacation, for sure. It is also related to the fact that I have been battling allergies for days now and those too always through me into a flare. When you add allergies and a vacation together, now that leads to one heck of a flare!
I have not been blogging because I feel so badly and am so foggy, but then it hit me, that I needed to share just how bad the fog is and how I am managing it. Thus, here I am…
My head is literally spinning, which is a physical symptom of the allergies and fatigue but is certainly making the mental fogginess so much worse. It is very much like being drunk, but I did not get to enjoy any wine, that is for sure!
I am supposed to talk to a group tomorrow about MesheaCrysup.com: LIVING a fibroLIFE. Boy are they in for a treat! A real, honest-to-goodness demonstration of LIVING with FMS! I have pieced together some notes. It will be fine. Seriously, I have put more effort into it than that. I knew this could happen so I prepared sometime back on a day I was feeling better. I just have to manage to get there!
Actually, I am feeling so overwhelmed, I pulled my corkboards out. That is right folks, I mean business! I have taken ONE piece of notepaper and put on it ONE thing I need to do. I have pinned each note up. I wrote down everything I could think of that kept coming and going in my thoughts. I will keep the board close by and do this on an ongoing basis.
When my head is less foggy, I will organize the tasks according to priority. I will also see if some of them are closely related enough to do at the same time or require being done in sequence, etc. Today, I was able to put the things I MUST accomplish at the top. That is all the fog would allow, but it is a start and I am proud to have that much done!
Also, when I am less foggy, as details for each task become clear, I will write them on each individual piece of notepaper. That way, even if I am foggy when the time comes to do that task, I will have some notes to help me.
I realize this next part is out of order, but I am leaving it there on purpose…
You see, having the board full of the notes gives me a visual way of getting things done. There really are times the fog is so thick that I know there are things to do but I cannot pick what do to. By having them on the board, I can see them and pick according to what I feel I can do or even just randomly pick one. This will allow me to feel some sense of control and accomplishment even on the worst day.
Well, for the sake of being real and helping others, I have let you see into my foggy world enough for now. I do need some pride left in tack! I certainly hope my next post will not be quite this real and revealing, but if it is, it is. Folks, this is what others do not see. I look as “well” as always, but I am as lost as a goose today! You would not want me for your nurse, waitress, cook, or housekeeper, I assure you. You see, Fibromyalgia is REAL, and our limitations are sadly so very real...and humiliating. Ah, saved again by spell check...
FOGGED but LIVING my fibroLIFE!