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!