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!