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Living with Fibromyalgia: Stacey’s Story

Guest post: What It’s like Living with Fibromyalgia by Stacey Chapman

I awoke at 4:30 am, drenched in sweat. I quickly changed out of my soaking wet clothes and began to shiver. Layer after layer I dressed in and tried quickly getting back into bed. I could subtly feel the nausea and body pain sinking in and I was desperate to fall back to sleep before they really took hold. I toss and turn until 8, when finally the pain and electricity, coursing through my veins, makes it impossible to lie in bed anymore. At 8:30, I get up for the day; my joints are stiff and achy, my entire body hurts and my head buzzes. I take my morning medicine and sit with my coffee as I wait for my pain meds to kick in.

Once a business owner and New York City Consultant, Fibromyalgia now occupies all of my life and time. I once had goals of becoming an Executive, had accumulated an outstanding track record and was well respected by my many colleagues.  Now, my house is silent. Colleagues are a long forgotten, most friends gone and my aspirations for the day revolve around whether or not I will feel well enough to stay out of bed. I sit silently praying that the pain meds will kick in, as I try to assess how my body feels and what my day might entail. After 90 minutes, I no longer feel like the Tin Man and am ready to get up.

I tend to our animals, do a couple of quick and easy daily chores and it hits me. The pain and nausea I am so familiar with won’t be taking a day off today. I try to fight through it for a bit and encourage myself that it isn’t really that bad. Fifteen minutes later, the dizzy spell starts and before I become violently ill, I slowly climb the stairs to bed. These days, I don’t even bother to make my bed. Most days, I end up back in it. I try to lie still praying the nausea and dizziness won’t progress into a migraine. Maybe, if I don’t move, I won’t get sick. I lie in bed, my head spinning and my limbs so tired and heavy they’re difficult to move. The tiredness envelopes my head so powerfully that I feel like I’m in a fog. I pray that just maybe the nap will do me good and I will awaken feeling better. I half-heartedly hope that I will get in a dog walk-my saving grace.

Two hours later, I awaken for the day and try to get my bearings about me. Once again soaked in sweat, I make my way to the shower. I shower with the temperature as low as I can stand, the door and window open and the end of the curtain pulled aside. I am hoping that today, the shower won’t cause a fainting spell. When it does, I am confined to the couch for the remainder of the day. I successfully shower in just a few minutes, grateful I don’t feel faint.

It’s now 1:30 and I’m finally stable enough to try eating. My stomach too queasy, I settle for carrots with peanut butter as a meal. I try starting my day again, this time with better success. I do some household chores, grateful to be up and moving and debate making some phone calls. These days, no matter how much I love people, it’s difficult to talk to the few remaining people in my life. I never have much to say. No, nothing is new. Yes, I still feel awful. No, there’s nothing any of the Doctors can do to help. Most conversations follow the same script and I find it challenging to constantly have to think of ways to change the conversation or find random things to talk about. In the end, I decide to avoid the phone.

My Husband is finally back at work today, he’s often home to take care of me. It’s a huge dilemma in our life. I love having him home to help and to support my often struggling mood, but money has become so tight that having him home affects our ability to pay our bills. I try not to let the loneliness and isolation I feel consume me and try to focus my attention on my dogs.

At 4:00, my Husband returns and I’m so grateful to have someone to talk to. He knows that I have been hoping for a dog walk and once we decide I can make it, we quickly head out before circumstances change.

Once home, we debate what I can actually eat. Most food makes me sick to look at or smell. We throw together a meal and eat our dinner. My day is now over. I retire to the living room and my Husband gets to his school work. I try not to allow my emotions to take over as he sits and studies. I remiss how amazing it is that his life still continues to go on: he continues to work on his degree; he strives for self-improvement and trains in Jiu-Jitsu. I try not to let those familiar, but unfair feelings of resentment in. I hate that I’m so jealous that his life goes on. I hate that I envy his feeling well. I hate feeling so guilty to have these feelings. So I turn on the tv to drown out my thoughts.

I sit and watch tv for a while, before my head starts to pound. Most nights, I have a headache and most nights, when those headaches start, I pray it won’t evolve into a migraine. Lights in the house blind me and a noise in the kitchen sounds deafening. I want to cry in frustration, but the instant a tear falls, this migraine will become a death sentence. Cranky and annoyed, my head is exploding and my ears ring. I am only allowed two migraine treatments a week, I try to think if I’ve already used it this week, but the pain is so bad I can’t think. I choke down my pills anyway and sit in the dark, waiting for them to kick in.

I wish I could go to bed. I wish I could end my day and that the sleep would eliminate the migraine, I wish I could go to bed with my Husband and cuddle. But, I push those unhelpful thoughts out of my head. I know I need to stay up as late as possible or my pain meds won’t last through the night. I can feel the vice grip of my migraine lessening as my medicine kicks in and I’m grateful that the profuse vomiting didn’t accompany it, this time. It’s 10:00 now. I turn on the tv again to mindlessly sit and watch until well after midnight. I’m tired enough that my eyes are closing and now know that I can finally end my day.

Another day gone, like so very many before it; I have nothing to show for this day once again.

This is Fibromyalgia. This is how I’m living with Fibromyalgia. And it is a stark difference from who and what I was prior to becoming sick with it in 2011. I wish I knew my life, as I knew it, would end when I was 37. I wish I could have had more time to become all that I aspired to be. Now, 8 years later, I am a shadow of my former self. I have learned in these 8 years that this life is what I make of it; sick or not. Wallowing in who and what I was is no longer something I do. Hoping for a better tomorrow is.

My name is Stacey Chapman and I’m living with Fibromyalgia. Please follow my fight at: www.fightingwithfibro.com

Living with Fibromyalgia can seem similar to living with Stiff Person Syndrome. Check out Amber’s post on living with Stiff Person Syndrome to see the differences.

2 Comments

  1. Whitney says:

    Hi Stacey, I’m sorry about what you have been going through with Fybromyalgia. I’m writing this because I appreciate your opening up about your private life, that’s not always easy. I know I personally have had some issues that sounded similar but not exactly like yours. I could relate to having things you want to do in life and that part of your life stopping. I had recentlygiven up on everything in life until I felt God tugging on my heart and saying , “ what about my word, I’ve given you my word to hold on to and believe in and I am here”. I’m not actually sure what I had but I had a good 10 years of isolation and pain. So much of what you said I could relate to. Still I had no answers from Dr.’s. Please know Stacey that you are not alone I was home so much, it was actually my safe place because I hated getting out. Just know that there are people out there that have been down this road like me, you are loved and not alone. I will pray for you and God’s healing over you. Remember he doesn’t slumber ! Even though I don’t know you you have my thoughts prayers and complete understanding. Do not beat yourself up, rest when you can and know you are not alone! Sending love and prayers your way Stacey, Whitney L.

  2. Linda Kinville says:

    Hi Stacey,
    My heart broke as I read your story. A story so familiar, mine not quote the same but similar in many ways. I was diagnosed 22 years ago. There have been bad years, really bad years, but there also has been good ones. I like Whitney know that there is a God who heals..I know because he has healed me twice. Last time I was fibro free for 3 years. Unfortunately a fall on the stairs and damage to my spine triggered it again
    But I know I can and will be healed at some point. ..I don’t know your journey and I REALLY don’t share this with everyone..but felt led to share it with you..perhaps it will lift your faith…THIS IS THE SEASON OF HOPE…so my gift to you is hope.
    Linda

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