Living with Fibromyalgia: Stacey’s Story

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This is a pinnable image. The background is a blue wall. There is a sunflower in a white vase on a cream table. The foreground is dark grey text that reads "What It's like Living with Fibromyalgia". - 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 Fibro. This is my life with Fibro. 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 fight with Fibro. Please follow my fight at: www.fightingwithfibro.com

If you loved this post (and I’m SURE you did, considering you’re reading this), you NEED to check out my eBook 10 Things You Need to Know About Living with Chronic Illness!

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10 Replies to “Living with Fibromyalgia: Stacey’s Story”

  1. Becky Johnson says: Reply

    Stacey, after reading your story and others I sit here and wonder why there are so many of us who suffer the same. I have now not worked for over a year and half. I use to be a RN. Giving up my license was THE WORST thing ever. I worked so hard and to let that go knowing I could not take care of someone else let alone myself was so heartbreaking and soul breaking.
    My husband is really the only connection to the outside. When I do get out it is for meds or a MD appointment. On top of my firbro is 3 mono’s…EBV, CMV and Shingles (in my eye). I have bone on bone in both knees, lymphedema in my right lower leg and a old herniated back with nerve root compression. To say the least I am or have been rode hard…worked hard…and I am broken. Like all of you here. I am so sorry for you all and your lack of what “use to be LIFE”. Life has become something new and different…scary,sad and unknown. Money is beyond tight, as I know it more than likely is for everyone here. I pray you all have some disability coming in or will soon. I wait for now. I have a hearing soon for which i will be 2 yrs since I applied, before that 2 other times, since 2016. Third time I got me a lawyer. Please, do not wait to get a lawyer unless you know how to work the system and know how to fill out all the legal papers.
    Guess I just want to say I am so sorry to someone who knows what it is like to have this disorder? disease? issues?….for whatever it is I pray for you when I pray for myself b/c living like this, watching others and time pass by with such a tremendous loss….one that others cannot understand or see literally is frustrating and only adds to the pain only those who have understand. Now it is time for more meds, to dull that which I want to feel but life is just too painful.
    You guys are not alone. Thank you for making me feel included, even through our struggles and pain.
    God Bless you all.

    Gentle hug
    Bek

  2. Thank you for sharing your story. Sending you thoughts x

  3. You are so welcome, Teri. I’m really glad you enjoyed the post! Thanks so much for reading and commenting!!

    Much Love, Stace

  4. I’m so sorry to hear this, Rosie. I can totally relate. I’ve never faced a tougher challenge than fighting with my own body. It’s beyond discouraging. My 3 kids are now all grown and gone-I experienced similar emotions while trying to parent them. I can say, as much as I wracked myself with guilt, all 3 kids turned out to be great. While it’s never what I wanted for them, my being sick taught them tremendous empathy and kindness.

    I think it’s great you try to always still do something. I follow that same “strategy”. It keeps me sane to always do something and helps to ease the feelings of inadequacy and guilt. I think you’re doing a really great job with some really awful circumstances. Be kind to yourself-you deserve it!!
    Please feel free to pop over to my Blog, http://www.fightingwithfibro.com I have alot of really great readers that live much like you do. Sometimes, it’s easier to connect with people when they understand what you live with.

    Much Love,
    Stacey

  5. Prayers and blessings to you and thank you for sharing.

  6. Rosie Cardenas says: Reply

    Wow I feel your pain and your daily struggles. I too am going on 7 years with fibromyalgia and my symptoms are out of control. I get brain fog and burning pain, migraines, stomach problems, plevis problems, feeling alone and anxiety never sleeping more than a couple of hours a day. Vision problems as well and my list goes on. I am constantly praying asking why me . I have 5 children and my last one was my girl my boys are in there teens but my baby is only seven and I feel so horrible most days she doesn’t get to have the mother I do desperately wanted to be for her. I don’t understand why this is so hard. My body is attacking it’s self fighting a never ending war. But I push my self each day to do something weather it’s making my family dinner or cleaning one room or do a little arts and crafts to keep me sane. I pray that we all find relief someday.

  7. Hi Caz, thank you so much!! I had hoped I was effectively conveying what this life is like. I feel like that’s important because a lot of us live similarly. We may have different illnesses, but we can all relate.
    I am SO appreciative to have been able to work with Georgina, it’s been really great and I’m thankful!!

    1. You’re so welcome, Stacey!!

  8. Aw Stace, it’s lovely to see you on here sharing your story. Seeing what you days are like is eye-opening, and there are many aspects I can sadly relate to. It’s hard sometimes not to think about the past, wishing we’d had more time, as you say, to be all we aspired to be, but living like that does us no good. Learning to live the best life we can with what we’ve got and hoping for brighter tomorrows is what keeps us going. Brilliant guest post to share with us, Georgina! xx

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