Do YOU Really Make a Difference?
by Meshea Crysup, fibroLIFE Founder
I imagine those of you who spend a lot of time online trying to help others with Fibromyalgia (FMS) have heard that question many times. I know I have. Even worse, it is usually those closest to me—family and friends—that just have to ask. I will admit, sometimes I even wonder myself. After all, there are so many of us now on facebook, Twitter, Pinterest, etc. Is there really that much to say about FMS? Is there really a need for so many of us talking about the same thing?
I have been in a flare after being sick and having to take antibiotics. Because of that, I have not blogged on FMS or posted and shared much about it for about two weeks now. However, during that time, I have been contacted several times regarding FMS. I would like to share just a couple of them with you.
A friend from Paducah was having new symptoms. She wanted my advice. Of course, any new symptoms must not be assumed to be “just FMS.” She has followed me online for years and attended many of my talks, so she knew this, but she needed me to tell her that I really meant it for even her! It turned out to not be fibro-related as well as pretty serious. She let me know the outcome and thanked me for still being here for her all these years.
I received a text. It simply said, “My name is______ (I am not revealing her name) and I am having __________. (I am not revealing her symptoms.) Could this be from my FMS?” After our text discussion, she simply said, “Thank you!” I still do not know her last name, where she lives, etc. I do not need to. I have put my name and number online via blogging, facebook, websites, etc. for years and have told people consistently, “If you have questions, TEXT ME anytime. When I am able to, I will reply.” I was so moved that she took me at my word! It also got Hubby's attention which is great, because he is not always so sure I am really making a difference. Actually, I was feeling very useless because of my flare and her text may have helped me more than my reply helped her!
I have a few more incidences, similar in nature, but you get the gist of it.
YES, my being online blogging, sharing, opening up, reaching out, encouraging, educating, etc. really does make a difference! It not only helps others, but it helps me as well!
I am just as convinced that, Yes, YOU—all of you, each of you— no matter how big or small, YOUR online presence really makes a difference as well!
How to LIVE a fibroLIFE©: Fibromyalgia Symtom Tracking
fibroLIFE Basics©: Tracking your symptoms is worth the time and effort!
You do not have to understand Fibromyalgia (FMS) at the healthcare professional’s level to LIVE a fibroLIFE©. What you must do, however, is figure out what causes your symptoms to increase and decrease. In fact, this is not something anyone else can do for you nor can any healthcare professional accurately answer for you. Yes, it is true that there are predictable changes, activities, stressors, etc. that will cause FMS to be worse, but the degree of effect of each of these is different for everyone. You have to determine your own “cause and effect” perimeters. The only way to do that is to track your symptoms.
There are tools available online and in books to help with this. You can create your own if you prefer even. What really matters is that you actually have a system that you are using!
Because my focus is in keeping Fibromyalgia as simple as possible for you, I advocate tracking the “Big Four”: Pain, Fatigue, Fog, and Mood. fibroLIFE© actually has a symptom tracker that utilizes pictures as visual aids to make it easier to identify what it is or how it is that you that you are feeling. I do not use “…on a scale of one-to-ten...” Frankly, who remembers what “six” felt like three days ago?
I do make little notes related to the “Big Four” pictures that I circle or mark to document information that will help me later understand the “cause and effect” aspects. For example, if I document that my pain was worse than usual, I will also note if it was storming, had turned cold, if I had overdone it the day before, if I was taking a cold, if I had experienced a very emotional incident such as a fight or a death, etc. I also tend to note how much pain medication I have to take. For me, this is a very consistent indicator as to how badly I am hurting.
Of course we have many other symptoms with FMS, but often they can be indicated with a brief note as well. If not, fibroLIFE© does have more detailed symptom trackers. I do not recommend them for long-term use, however. After over a year of testing various symptom-tracking systems with several FMS sufferers, we found the more basic the tracker, the more apt they were to use it. Tracking symptoms in depth for a few days is not as important as tracking “the big 4” an entire month at a time.
Doctors also got to see these trackers in use during the same time period and found the information very helpful in quickly understanding what their patients day-to-day fibroLIFE© looked like. In fact, the tracker is designed to show an entire month’s worth of symptoms at a glance. This type of information tends to promote communication between doctors and patients, improve doctor/patient relationships, and lead to improved and more effective FMS treatment plans.
Whether you are trying to determine what is wrong with you, have already been diagnosed with FMS, or have been dealing with FMS for years, symptom tracking is an essential part of minimizing fibro and MAXIMIZING LIFE—an essential part of LIVING your fibroLIFE©!
If You Knew You Would Not Be Judged…
One of the people I follow on facebook had this question posted today: If you knew you would not be judged, what one thing would you do differently? Surprisingly, everyone was declining to answer! Not surprisingly, I did not hesitate to answer. After all, the parameters of the question clearly stated, “If you knew you would not be judged…” What was there to fear? Apparently, no one else believed that they could trust that they would not be judged.
To be honest, I did not believe it either. I suppose since I knew I would be judged, I must not have cared. Why else would I have answered?
Another person I follow on facebook had a bit of a twist to a common quote. Instead of saying, “I’d rather regret something I did than something I did not do,” the comment made was, “I find what I regret most are all things that I did.” I could not relate at all. Of course, I regret things I have done, but at least I “did”—I LIVED.
I have faced challenges in life—big ones—as far back as I can remember. I had severe pain and was not well, but not actually sick either, as far back as I can remember. I lived in fear in my home—the one place every child should feel safe—as far back as I can remember. People did not believe I was in pain or sick. People did not believe that home was not safe. They did not always come right out and say so, but, even as a child, I could tell.
Maybe the fact that I have dealt with knowing I was being judged—and wrongly—from such an early age is why I was the one today who answered the question of what I would do differently without hesitation.
Add to that, staying safe and feeling well were never “givens” in my life—again, as far back as I can remember. So, yes, many of the things I regret are things I have done rather than things I did not do, but I am more than good with that. I want my mistakes in life to mean something—to be because I was trying to do something rather than not trying. Doing nothing is existing. Trying is LIVING.
What did I say I would do differently?
I said I would have studied Ancient History and Civilizations, become an Egyptologist, and have spent my life traveling—probably while remaining single.
Logically, the next question has to be: Since I feel so strongly at this point in my life that I wish I had done these things, what am I doing about it now?
I have read about Ancient History and Civilizations my whole life, and continue to do so today. The same with Egyptology. I travel as much as I can. Granted, I have not been able to travel to the places I read about, I am looking for ways to do so in the future. In the meantime, I am part of several online groups that have the same interests.
Also, because I love Ancient History, loving history in general was a natural progression. I have studied World History and American History for years. I have traveled to many of the places I have studied, including St. Petersburg, Russia. I plan to travel to even more of them. Also, I now LIVE in one of the places I studied: Vicksburg, MS. I am also, as my followers know, now DOING what I can to support “Rediscovering Historic Vicksburg”.
I am not worried about being judged by others. I am not worried about mistakes I might make because of what I am trying to do. I am too busy LIVING my fibroLIFE© to the fullest, in spite of Fibromyalgia (FMS).
I want to end with a few questions for you:
Yes, someone will judge you, but what would you have done differently?
Yes, you will make mistakes, but what are you going to do about it now?
It is a brand new year; what better time to start?
I heard a quote today I am going to borrow and modify a bit: I want to be at the scene of the TIME!
I am very excited about what all of us are going to do in 2017, each LIVING our fibroLIFE©!