Being Kind to Myself When Fibromyalgia Shows No Mercy

Isn’t it a strange feeling? When you know how you should feel, but you can’t make yourself feel that way. The feelings of guilt because you can’t do what you really want to do, but you can’t stop them from arising. Or the feeling of sadness for missing out on what you know you couldn’t have been doing anyway because it would have left you with so much physical pain for days to come. Or the feeling of anger at a disease that sometimes seems invisible to everyone else, even though you know that nothing — especially anger — will ease the suffering.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

Fibromyalgia visits me in times of stress and worry more than any other time. She creeps in through my fingers into my joints and eventually does her best to immobilize everything from my toes to my brain. Relief only seems to return in times of complete silence on days when I am able to eliminate all of the voices in my head that remain from the busy days of teaching high school and parenting young adults.  But, ironically, those are the days I want more than anything to do more. More with my husband. More with the only child that still wakes up in our home.

Yet, those quiet days that I don’t have to set an alarm clock are also the only days I have to recover. So, I try to do what I know is best for my body and shut myself away from the noise and conflicts and decisions and to-do lists. I try so very hard to truly relax, but that’s when the dilemma usually starts. I crawl into bed or take a blanket to the couch and turn on a TV show that requires no concentration, lay my phone down, and cuddle with my dog, but there she is again. This time, she enters through my thoughts of guilt for not helping my husband clean up the leaves in the yard or do the grading that needs to be done or sit with my son to help him make decisions that are so difficult for seniors in high school. She finds my weak spots and convinces me to open my laptop or suit up to go outside where she knows she has control again. Because not only do I give up the time of healing my body truly needs, I allow her to convince me to take part in activities that will result in pain and anguish tomorrow, when the cycle begins again.

I have a plethora of knowledge and experience that help ease my pain and control my anxiety. I have spent years compiling hundreds of resources that I dream of someday sharing with others like me. So many of us know what we need to do to live as comfortably as we can with this disease, but fibromyalgia just doesn’t seem to waver in her intent to control every aspect of every day.  Even on the days we get a break, we yearn to be the people we used to be. I grieve the loss of my old self  Every. Single. Day. And, no matter how good my intentions and how strong my will may be, I just can’t find enough time to feel well enough to do what I know is right. To do what my heart tells me is best for me. For the ones I love. And for the strangers I want to help.

If you know, you know, they say, and I don’t think that could be any more true for those of us with chronic pain. And, it’s also so true that if you don’t know, you don’t know. I work hard on my mind and my body, and wear a smile for my students and colleagues, and work my ass off every day at work and at home. I try so hard to take care of all my people and myself, but I often find myself in this very spot. Trying to convince myself that it is OK to sit down while others stand, it’s OK to take a break while others work, and it’s OK to heal. But, I just get so frustrated that the old me, my old thoughts, creep in and control my emotions even on those days.

It’s a strange feeling to not be in control of your mind and body. It’s scary knowing how you should feel, but can’t make yourself feel that way. It’s lonely and difficult and disheartening, but at least we have each other. And, that’s why I’m writing today. Because, maybe what I need more of, maybe what we all need more of, is to talk to others that know how we feel. And, how we don’t feel. And, how we used to feel.

Maybe — no, definitely — there is someone out there that truly does understand, and maybe I can help them while I sit here in silence with my blanket on my lap and the sound of the leaf blower coming from outside. Just maybe.