Guest post: What It’s like Living with Fibromyalgia by Stacey Chapman. Originally posted on georginabanks.com.
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.