Piercing the Invisible Veil of Fibromyalgia

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Laguna Beach, CA July 2017

“It’s life that matters, nothing but life—the process of discovering, the everlasting and perpetual process, not the discovery itself, at all.” – Fyodor Dostoyevsky

I have talked about having fibromyalgia in my last two posts and I want to explain why it’s such a mystery to many, and why it is so important for me to talk about.  Mainly because it is an invisible chronic illness that affects 5 million people (NIH: National Institute of Arthritis and Musculoskeletal and Skin Diseases).  That picture above is me, taken this summer, and I look healthy and happy, which I am.  What is not visible in the photo or to anyone who looks at me is that I was in pain that day, and I was extremely exhausted.  I’m sure most people with fibro, like myself, brave through the pain and exhaustion because they don’t have a choice.  It’s a constant battle and I have good days and bad days.  This day in the photo was a relatively good day.  What people don’t see is the feeling of waking up everyday unrefreshed, having pain in my neck, shoulders and hip, and the psychosomatic symptoms that accompany my pain, like depression, anxiety, frustration, and anger.  And I am a positive, happy person!!  I don’t want to talk about my fibro to complain or gain sympathy.  I am actually a fighter and an eternal optimist in life, but a lot of people who might not know someone with fibro might think it’s a made up illness because we don’t look ‘sickly’.  Even some doctors don’t believe that it’s real.  My former primary care doctor back in Chicago didn’t believe in fibro and when I struggled to recover from adult mono, she dismissed my complaints.  So, I have had personal experience with people not recognizing it; however, it doesn’t mean fibro doesn’t exist.  Hence, the term “invisible illness” and I hope that by hearing my story, someone somewhere can relate or have a better understanding about it.

The truth is for me, I don’t want to believe in it; mainly because I still carry some residual anger towards having it.  I was diagnosed only about 3 years ago, even though I have had symptoms for about 10 years.  I was in the dark about what this was as much as the next person, but the more I uncovered, and the more I identified with it, the more upset I became.  I am one of your ‘Type A’ personalities, always wanting to be on the go, and do more, and always having the inevitable “FOMO” syndrome.  What fibro brought me was forced breaks in life, and more rest, but less socializing, working, and intense exercising.  This was not something I viewed as a positive change in my life.  I hated it and hate is a strong word.  I still do, unfortunately, but I am working towards healing those feelings and coming to a place of loving acceptance of myself.  I used to love going to spin classes, or kick boxing, having a personal trainer and pushing myself, but one thing I noticed is after all my hard workouts, my body backfired on me.  I would wake up in incredible pain (not the good kind after you really work your muscles), but unbearable pain, and I felt like I had the flu.  I would have a cold, chills, aches, and I felt completely exhausted and drained.   I didn’t know why this was happening to me and I used to beat myself up about it because I loved working out, and still do.  I didn’t want to stop or slow down!  I soon discovered that these episodes were called fibro “flares” and now I recognize the symptoms, but they don’t just come after intense workouts, they show up when I’m very stressed or exhausted too.  Regardless,  I learned that I had to decrease the intensity of my workouts, even the lifting of heavier weights because my body didn’t respond well.  So, over time, I have come to be gentler with my workouts.  I lift light weights with more reps, use resistance bands, power walk/jog and I always did yoga, so I continue with that.  Stretching and doing yoga poses first thing in the morning really helps me set my day right.  I am still learning though, as having this invisible illness is a work in progress for me.  I may never fully get it right.  And that’s okay.  There are days where I do push myself too hard when working out, and I pay the price the next few days.  There are many components to having fibro that one needs to work on to improve their lifestyle.  Exercise is that for me, but so is diet, mental health, and spiritual health.  I will continue to inform and share my experiences about how I have begun to pierce this invisible veil of fibromyalgia, and hopefully you will continue to read and make changes of your own with your health.  We only have one life and one body!  Make it the best you can!

xo

~Sheela

 

4 thoughts on “Piercing the Invisible Veil of Fibromyalgia

  1. I’ve had fibro for the past 8 years an recognize what you write about the anger you feel towards it, I still don’t really believe it or don’t want to, and sometimes I even tell myself that it’s all psychological (which really doesn’t help). Reading your post made me think I might join some online group or maybe ask my doctor to see if there is any more info out there since I got the diagnoses. Thank you for sharing your experience ♥

    Liked by 1 person

    1. I do think so much of dealing with fibro affects our psychology because when I’m in pain or having a flare, I get really depressed and I’m normally not like that. I thought about joining a group as well. I saw some support groups on Facebook. I have also tried lots of alternative therapy in addition to physical therapy: acupuncture, floating. I wish you luck and thank you for sharing your experience! 🙂

      Liked by 2 people

  2. Excellent article and I totally understand. My wife has suffered from fibro for many years and has come up against many, including doctors, who think “it’s all in the head.” You and I and my wife know that it is not. It is real.
    On Thursday, she had routine injections for flu and shingles. The nurse told her that “These might make you feel bad for a few days.” My wife laughed.

    Like

    1. Thanks for your email, Lance! I do understand what you and your wife are going through. I wish your wife the best in health in 2018 and that she continues to be strong and fight the “naysayers”!! Best wishes!

      Liked by 1 person

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