fibroSecrets (Part 5): I Was Afraid to Have a “Good Day”
by Meshea Crysup
Founder of fibroLIFE© & LIVING a fibroLIFE Blog©
This is the fifth blog in an ongoing series in which I confess my fibroSecrets©. I have found that many others with Fibromyalgia (FMS) are keeping the same fears in, dealing with them—or worse yet, not dealing with them—alone. My goal is to help each of us find the courage to LIVE a fibroLIFE© without fear or secrets and to help those who share a fibroLIFE© to better understand.
fibroSecret© five: I was afraid to have a “good day”.
Actually, I am hedging there a bit—afraid to admit what I am about to admit apparently--I was afraid to admit I was having a “good day”.
How sad is that? Seriously, how sad is that?
If someone with a heart problem has a “good day”, they do not have to worry about people thinking they have been “faking” their heart problem! Their friends are happy for them!
If a person has cancer, no one assumes they are “cured” when they have a “good day”. Everyone considers it a blessing they should embrace!
If someone with arthritis is having a “good day”, most people realize that tomorrow, or the next day, they may be worse again. Most do not expect them to function at this “higher level” all the time.
But if you have FMS, or some other Invisible Illness, the perceptions are entirely different! I heard it growing up, as relatively healthy adults in my life talked about other adults who were not as healthy. I saw it as a nurse, as other nurses, doctors, therapists, etc., assumed they could “just tell” who was faking and who was not. I learned, first hand, that family and friends could not be trusted to understand and that healthcare “professionals” were often anything but professional, if they could not “see” an illness or condition to their personal satisfaction.
This life lesson greatly impacted how I LIVED—or rather did not LIVE—my fibroLIFE© for far too long. I missed out on far too many things out of fear of what others would think, say, and/or do if they saw me or heard about me having a “good day”. The truth is, sometimes I still have to fight this battle. Actually, I am fighting this battle this very day!
I have been pushing the envelope for a good while now. I took on more than I should have. I over-extended myself. I committed to things that I knew would cause me increased anxiety and stress. No one “made me”. It is “who I am”. I take responsibility for that, and I do work on not being that way, but sometimes I fail. I hate having FMS. I hate not accomplishing all the things I can conceive of. I resent not being able to do all the things I see that need to be done and that I know how to do.
So, here I am, in a major flare, having to re-commit to the much less stressful, demanding fibroLIFE-style© I must live to LIVE optimally, and re-tackling the fear again of “outing myself” on “good days”. I told everyone involved that I could go into a flare and have to do less. I tried to manage expectations, explain how FMS works—ironically keeping those with FMS from working—and I believe those I have gotten close to do understand.
So, this morning, I had to make another right decision for me, and just not worry about what others think. I needed to get out of the house. I needed to try to write something—accomplish something. I needed to be alone, but not alone. (I do not feel up to talking, being entertaining, etc. but I needed to get out and interact some—another whole series of blogs would be required to fully explain FMS and the truths behind that one sentence!)
So, I am at my favorite coffee shop. It is less than five minutes from my house, therefore I felt I was “safe enough” to drive there and it was “close enough” if I started feeling very badly. I “look” fine—maybe a little tired—but of course my hair and makeup are done, I have my jewelry on, etc. (No one sees me NOT at least looking like I feel ok!)
I am struggling to “find words”, but as long as I am not talking—yes I am capable of “not talking”—no one knows that.
I am writing, so it “looks like” I am being productive again.
The truth is, I feel awful. My pain is up. A much better blog post is in my head but, frankly, I do not have the energy to fight the fog that keeps causing it to disappear from my mind’s eye. That same fog, along with a headache that just will not go away, keeps it from flowing from my mind, through my fingers, onto the keyboard, and out to all of you as the quality piece of work, full of much more valuable insights and information, that I know is “in there”.
What to do now?
I am going to leave the title of this blog as is, and, hopefully, write the blog post it is supposed to be another day. (Why? Because I feel that strongly about being REAL with all of you!) But in truth, today, my most relevant fibroSecret© eluded even me until just now.
The truth is, I am afraid…
But not that people will see me out and think I am “cured” or have been “faking it”. Right now I am not concerned that someone might think I will be doing as well tomorrow as I appear to be doing at this moment.
Today’s fibroSecret©--apparently fibroSecret Six-- is this fear:
What if I do not “get better enough” again to pull that “much better blog post” out?
What if, this time, I pushed too hard, and I cannot return to my former “optimal state” which was already sub-par, to me?
What if this is going to be my “new norm”?
This fibroSecret© Six is not unwarranted either. As I have gotten older, “optimal” has become less and less. I have had FMS from as far back as I can remember. I was able to work very high-stressed positions when I was younger. I was very high-functioning and I have witnessed that decrease incrementally over the years. What if this time is one of those times?
Maybe this will be fibroSecret© Seven: If this is my “new optimal”, I will make the best of it too! I will LIVE my fibroLIFE© to the fullest extent possible!
But if you know me, you know, that is really not a secret at all!
Stay tuned. I will write fibroSecret© (Part 5): I Was Afraid to Have a “Good Day” Re-visited! It will be that “much better blog post” that I cannot pull out of my foggy, tired, aching fibroMind today! I cannot tell you when, but I will do it!
fibroSecrets (Part 4):
My Dysfunctional Childhood Greatly Contributed to My Fibromyalgia
(Part 4 of On-going Series)
by Meshea Crysup
I do not talk about this for sympathy or to belittle anyone involved. I discuss it because secrets hurt—especially fibroSecrets©
Daddy is still alive. I visit him, we talk on the phone, etc. We never discuss the past. In his mind, it never really happened. He always blocked it out as soon as it was over. What purpose would it serve to make him face the truth at this point? He is 80+ years old. I forgave him long ago, for both our sakes—but mostly for mine.
Founder of fibroLIFE© & LIVING a fibroLIFE©
Fibromyalgia Patient-Expert, Blogger, Author, & Speaker
One of the major problems those with Fibromyalgia (FMS) have is non-restorative sleep. For some, going to sleep is the issue. For others, it is staying asleep. Sadly, for many, it is both! Regardless, when one has FMS, one does not reach the level of sleep necessary to actually be, let alone feel, truly rested, restored, and rejuvenated. As a result, the body does not heal nor or replenish all the chemicals needed. This contributes to fibro fog, mental health issues (anxiety, depression, bi-polar, etc.), damaged/non-repaired muscles, and debilitating fatigue just to name a few of what is actually a very extensive list!
As I have previously shared about my pain and other FMS symptoms, my non-restorative sleep issues also are a part of my earliest memories. I cannot remember a time when I was not afraid. I grew up at knife point, gun point, and on the other end of a fist. There is much more to the story, but you get the picture. Terrified each night, I literally replayed entire episodes of Gilligan’s Island in my mind, inserting myself into the storyline, for mental distraction and emotional escape. I would eventually sleep, but I often felt as if I had not.
Perhaps I was predisposed and this was the trigger, but I cannot--and I do not—say this was the cause of my FMS. I am positive, however, that it contributed to a “perfect storm situation” in which Fibromyalgia could, and did, thrive. I am not alone in this—I am not the only one with this fibroSecret©.
How Does This Connect to Fibromyalgia?
Researchers have found that the hippocampus, which is the part of the brain responsible for short and long-term memory, is altered in abused patients. “Re-remembering” of pain and perceiving pain more intensely—two things connected to FMS—are possibly related to this change or even other, unidentified changes.
Is This a Slippery Slope for FMS Advocates?
Some fibroVOICES© I greatly respect have expressed their discomfort with articles on this link between childhood abuse and FMS. I understand the concerns of contributing to the notion still held by far too many that “FMS is all in the head”. This link however, in my opinion, actually further validates FMS as a legitimate illness. The fact is, without a “psych diagnosis”, the government (Social Security Administration) does not acknowledge the diagnosis of FMS. Non-restorative sleep’s integral part in FMS and its subsequent effects, provide a legitimate explanation for this.
I believe we have far more to fear in keeping this fibroSecret© than we do in encouraging speaking up and getting the help needed. In fact, for me, making the connection between my life-long depression and anxiety, my dysfunctional childhood, and FMS gave me a greater understanding of the complexities of my illness. It was the first step in my accepting that I did need to take antidepressants and ant-anxiety meds. This is an important part of my personal FMS treatment plan. In fact, it is the very aspect of it that has physiologically enabled and psychologically empowered me to more fully LIVE my fibroLIFE©.