Je ne regrette rien

A Day With Fibromyalgia

Posted in 100 Things, life, Mardi Gras, marriage, Mental Health, new orleans, Parenting, Relationships, Uptown by Amy on February 20, 2009

250fms_warning“What can I do to help?” my husband asks me, seeing exactly how much pain I am in when I attempt to walk from the couch that I have made my home to the bathroom, five feet away.

“Take me out back and put me out of my misery, ” I respond, thinking of how we took care of ailing livestock back on the farm in Wisconsin.

“Besides that?”

“There is nothing you can do, honey, just help me.”

Unfortunately, in my life, this exchange takes place quite frequently. Sometimes it takes place daily, sometimes weekly, but it is a constant in my life.

For me, it is apart of living with fibromyalgia.

Fibromyalgia is so much apart of my life that I have a nickname for her, Fibro, just like I call my husband Papa Bear or my daughter Pumkin or Peaches or Baby Girl. I don’t have the affection for Fibro like I do for my family, but the thing it has in common is that it is just as much apart of me as they are – it is always here, even when I wish it would go visit somewhere else.

Fibromyalgia affects different people differently. For me, when Fibro is at full flare up, I am essentially immobile. To walk from the couch that becomes my marked territory during these days to the bathroom, a whole ten feet, tears are in my eyes and I am crying because it hurts to even walk. This isn’t an exaggeration. Every step I take causes a shooting, burning, and electric pain to course up my legs from the time that my foot lands on the floor to take a step until I attempt the next step with my other foot.

There have been times when I have walked and my legs completely give out from under me and I fall. This is especially inconvenient when you are out in public and you fall down hard on the cement. This also leads to a plethora of fire trucks and EMS trucks being dispatched to your location, to make sure you are ok, and you have to look at them, humiliation on your face, and tell them that you are just fine, that your legs just gave out for a minute and you will be ok.

For me, Fibro means planning my days and activites on a day-to-day basis — needing to know exactly how i am going to feel that day. It also means not being able to work outside of the home — I obviously can’t get a labor job (although I LOVE labor jobs), sitting for extended period of times causes my tail bone great pain, sometimes my arms hurt so much that lifting them is nearly impossibly, and then there is that whole walking thing.  This means that our family’s survival lays firmly on the hands of my husband, who although he has a law degree, hasn’t been able to find a regular job. So, on top of the pain that I feel, I have a whole hell of a lot of guilt, too.

Aside from the pain with my legs and hips, it is rare day when I am not plagued with a headache. I pop Advil and Aleve like it is candy. I lay down at night and I can feel my head throb. At times I ask my husband if he thinks that I have a brain tumor or if you thinks the thing that will get me is a brain aneurysm. I know it is all apart of the Fibro, but I worry. A. Lot. I also experience non-cardiac chest pain, which is good when you want to go out and live a normal life with your girlfriends. The looks you get are horrifying, though you know they aren’t horrified by you, but worried about what this means and what they should do.

I am thirty-two years old. I should be going hiking. I should be out wandering around this city.

Instead, I am living in pain almost every single day. And nothing makes the pain go away, it just fades into the background and pops up at the most unappropriate times.

Oh, and if my words get confused, or I am having difficulty understanding something that you say, it isn’t because I am a thick person. It’s because “the fog” and memory loss comes with Fibro too.

I went to the Krewe of Muses parade last night with Cleo. I had been told by a variety of people that this was THEE parade to go to and I would love it. All day, I rested, suffering from foot and leg pain, hoping that staying off my feet and taking a nap may dull it just enough. I forced my body to go, even though it was begging to just stay at home.  A few hours later, after I arrived safely home,  I could hardly walk. The pain was horrible. And here I am, trying to get the pain to a level that I can do it all over again tonight for the two parades rolling. Tonight, luckily, my husband is home so I won’t be doing this all on my own. Thank. God.

It’s hard, being 32 and experiencing this level of pain. It’s harder being a mom and not being able to take my daughter to do everything I want to because I am afraid of what will happen or the pain is just to much or my husband happens to be working that day. It’s hard not beating yourself up. We would be in a much better place financially if I didn’t have Fibro. We would have a much more active life. It’s hard not thinking that your husband deserves much more than a woman that is broken, him having to play caregiver some days.

A day with fibromyalgia is not a fun day. But it is a day. And at least I have one more day.  Alone or not, I have one more day.


13 Responses

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  1. […] A Day With Fibromyalgia […]

  2. Charlotte said, on February 21, 2009 at 11:42 am

    Just wondering if you’ve tried acupuncture?

    • Amy said, on February 22, 2009 at 12:43 am

      I haven’t attempted it yet. It is definitely something that I am researching, though. I think that I have tried just about everything else, though. Also, if you have any suggestions for the non-stop sleep disturbances, I would appreciate it. I am going to try a white nose machine, as I am such a light sleeper anyway, but sleep disturbance is also something I experience with Fibro. 😦

  3. Isabel said, on February 23, 2009 at 12:03 pm

    I don’t know what consolation to offer you, but I hope you find some relief soon.

    My problem isn’t as bad as yours, but I have the beginnings of arthritis. I hadn’t had any pain for the past 3 months, but now that the humidity is rising, my hands are starting to hurt. Drat.

  4. […] at Je Ne Regrette Rien with A Day With Fibromyalgia and This Angel Needs […]

  5. […] at Je Ne Regrette Rien with A Day With Fibromyalgia and This Angel Needs […]

  6. Karen said, on October 6, 2009 at 12:31 am

    When I read your comment, I truly felt like you were also writing about my life. I am currently 39 years old however, feel more like 90. Although, when I was able to practice as a nurse, I took care of some pretty spry 90 year olds.
    I have read many blogs,(never responded before) but yours just really touched home to me. I have lost all of my friends due to them getting tired of inviting and I have to decline because I am in too much pain or just completely exhausted. Thank the Lord above, I have a wonderful husband, a daughter, and a son. (Oh I can’t forget my dog, Roxy) They are what keeps me going. I am so tired of not being able to get out on my own (due to not being able to drive). My husband does all the grocery shopping.
    Okay, I am going to be done with my whine session! I pray you are in much better health and always know God is with us every step of our lives. Sometimes we just forget it.
    God Bless you and your family-
    Believe in Miracles!
    Sending “soft” hugs your way- Karen

  7. Emily said, on November 16, 2009 at 8:41 am

    Amy…my 12 yr. old daughter was diagnosed with fibro 3 years ago. We have been to specialist after specialist. They cannot find a medicine that actually takes even the edge of off the severe pain that she is in. Though with children the symptoms are suppose to get fewer and further between. This is the complete opposite for her. She is a cheerleader in 7th grade. She so badly wants to be there with her friends and practice and the games. Because of her condition she has gone to about half. She has gone to the er and been given strong pain killers but she has reacted very badly to these, even death at one point, I’m not kidding. Since I do not have FM, I don’t completely understand her pain but I do empathize. I give her lyrica, ibprofin, rub her constantly, warm baths, and ice compresses. I am so desperate for more information on what to do for her. I am helpless and broken hearted as I watch her sit on the couch and cringe with the pain that radiates through her. If you have any information, please, I would love for you to e-mail me(or anyone else for that matter). Thanks you so much…and hang in there girl!! Emily

  8. Denguy said, on January 22, 2010 at 10:32 pm

    Came here from a search on Fibromyalgia. My mother has this and tried many things before going to a naturalist/naturalpath? She completely altered her diet and feels much better, but not 100%.

  9. […] A Day with Fibromyalgia by Amy at Je Ne Regrette Rien […]

  10. […] A Day with Fibromyalgia by Amy at Je Ne Regrette Rien […]

  11. […] A Day with Fibromyalgia by Amy at Je Ne Regrette Rien […]

  12. Shelli said, on March 17, 2010 at 3:24 am

    I arrived here by way of “Best Just Posts of 2009” and let me tell you, I feel your pain! I don’t have Fibro, but I do have several debilitating disabilities. Of course, like yours, they are not “visible” to others, so unfortunately, I get a lot of the same “advice” that you are given. (loved your warning, btw!) Since I don’t know you, and haven’t read any of your other posts, I don’t know if this question has been answered previously, but have you applied for SSI or SSDI? I have, and was turned down 3 times (going all the way to the last appeal, appearance before a judge, etc.). I’ve become so cynical about it, that I refuse to try again, even though we could certainly use the money. I know the guilt you feel, as well. I’ve been dependent on someone else for basic living since I was 22. I long to be “normal”, out there working for a living, doing all the fun things that a person my age (39) should be doing, and contributing to our family and society. I have no advice for you, only a kinship that living with a painful and debilitating disease(s) can afford. You’ll be in my thoughts.

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