This Is What Having Fibromyalgia Feels Like

2012 May 10
by Jenny

**Disclaimer**I wrote this last week when I was at the apex of one of the worst pain flare-ups I’ve ever had. But I took my meds and got my pain down, and checked in with all my support people, and I’m doing much better now.  So please don’t worry that I’m about to hurt myself, because I am OK. This is just what it feels like to be in that moment.**

Right this very minute there’s a bird singing outside my office window, and I wish to God that it would Just. Shut. Up.

I don’t hate birds; I suffer with a chronic illness. I have fibromyalgia which, among other things, is a chronic pain disorder that takes even the sweetest, gentlest sensory input and turns it into unbearable physical agony, as if your nervous system is constantly being struck by lightning

In addition to the crippling pain, debilitating fatigue, and the need to take so much medication that God only knows what your insides look like by now, this illness also steals away your ability to savor and enjoy your experience of your life.

So maybe it’s not my nervous system’s reaction to birdsong that hurts so much. Maybe it’s that I can’t remember the last time I wanted to sing.

I usually keep these feelings to myself, because I’m afraid to let other people know how dark a place I’m in when I’m in excruciating, never-ending pain.

I can admit it to myself. Being sick like this means that I spend a lot-maybe most-of my time alone with The Demon of The Truth.

I know, down to the marrow in my bones, what it’s like to get up every damn day and choose to show up for this raw, unvarnished, ugly life. I know what it is like to put one bare foot in front of another, navigating the razor’s edge of existence. I know, more than most people, what it really means to choose life. And it ain’t pretty.

My normal reaction is to protect those around me from knowing these things, but not today.

Today I am suffering. And that is what I need you to know.

10 Responses leave one →
  1. 2012 May 10

    *Sigh* We need to get you a watcher. If only.

    Meanwhile, holding your hand. I think the technical term is “misophonia”, finding small noises unbearable. I don’t think that’ll help, but if you like words, it’s a good one.

  2. 2012 May 10

    “I know, down to the marrow in my bones, what it’s like to get up every damn day and choose to show up for this raw, unvarnished, ugly life. I know what it is like to put one bare foot in front of another, navigating the razor’s edge of existence. I know, more than most people, what it really means to choose life. And it ain’t pretty.”

    Thank you for putting into words something that is so hard to say. And so True. *hugs*

  3. 2012 May 10
    Gabby permalink

    Man do I know the feeling. I just want to lay in a dark room when my fibro flairs up to butt ton more than I can handle and cry but life goes on and I understand exactly how bad it can be. One thing that helps me is to make myself rally against the pain with angry upbeat music and eventually despite the pain I am singing stupidly at the top of my lungs. I have been inspired by your blog ever since my diagnosis in 2009. Your blog helped me to explain what was going on to my family and to accept that although most of them get it or try to get it others just won’t understand so thank you so much.

  4. 2012 May 10
    vanessa permalink

    Wow! This hit a little too close to home and made me cry. And i thank you for being brave enough to put into words what so many of us deal with on a daily basis.

  5. 2012 May 12

    Wow! I totally felt this way last week. There is a baby bird and bird parents living in the bushes outside my bedroom window. All I could think was, “Please shut up. I need to get some more sleep!”

  6. 2012 May 12
    Liz Nolan permalink

    I’m new to your facebook page and your blog but I want to thank you for doing this, especially when you have fibromyalgia. No one can really understand what it’s like to have fibro unless they themselves have it. Most of us don’t talk about our illnesses much and tend to keep our feeling to ourselves most of the time. I grew up with a mother that had a lot of medical issues some very severe. When I was young and even into young adulthood I didn’t understand what she was dealing with and I was not very sympathetic, especially since it seemed to be one thing after another. When you constantly hear over and over again about someone’s illnesses you can tend to just really get tired of it, or at least I did. I don’t want people to feel that way about me, not sure if I’m always successful, but I try. Yet sometimes it’s the only way for people to know why I’m not always very social, why I don’t enjoy talking on the phone for very long and why I can’t do the things I used to do. So today, May 12, I’m posting on my Facebook page about Fibromyalgia Awarness day and make it know that I have this. I also hope this helps to remind people that just because someone looks “normal” it doesn’t always mean that they don’t have problems. We all need to be reminded to act and think with compassion and less quick to make judgements, especially negative ones. When I was still working I once had a co-worker ask me if I was drunk. I was having a difficult day, things were very stressful and I was struggling to remember certain things. I felt so humiliated. I didn’t know how to react or what to say, so I said nothing. I tried never to discuss my health at work. There were sometimes that was impossible, especially the times I just broke down in tears because of the pain I was in. I also was struggling with severe lower back pain at work. After four years of struggling I broke down and left my job. It was the most frightening thing I have ever done. Now there is no more crying and praying in the shower every morning before work. That was two years ago. I’m on perm. disability now, I turn 60 in a couple of weeks.
    Thanks for letting me share my story.

  7. 2012 May 13
    Casey permalink

    OMG – yes!
    So much empathy for (well, fucking every pain you have, really), but this one I know. Sensitive to light and noise, I am.
    And it’s songbird-landia here.
    I lay in bed, having been awakened by birds saying the SAME THING repeatedly, at FIVE in the fucking morning. The crazy-fire in my head ignites and I lay there imagining what they’re saying over and over and over. “Good morning!””Good morning!””Good morning!” [Me: "not anymore thanks to you!"] Seriously, I know that birds have different calls. Just not the ones that screech right outside our window. And also above our tent when we camp. Same damn thing. Argh!

  8. 2012 May 19
    Melissa permalink

    Soooooo true!!! I told my BFF yesterday that I was happy we had a bad storm because it blew the nest of baby birds down and now I don’t have to hear them all day and night ( thanks to a security light that made them think it was daytime) . She called me crazy and it was nothing against the poor babies or birds In general but good grief they were noisy!!! Like its not hard enough to sleep with this crap!

  9. 2012 November 22
    Lincoln permalink

    I love that I found this site. Here I am up still because the pain won’t let me sleep. Plus I have a hereditary numbness condition as well. So at night if I’m not in pain, I have to shift positions because random body parts are numbing out.

    And I’m numbing out more often because I’m taking Cymbalta for the fibro pain, which has made me drop 45 or 50 pounds. I don’t even know what I want to complain about, because sometimes it’s this giant ball of stuff that I can’t untangle.

  10. 2013 November 17
    Bailey permalink

    I feel ya girl…Totally get it. Totally understand. Thanks for being clear headed enough to write. It’s a goal of mind.

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