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How Fibromyalgia Forces Me to 'Reimagine' Myself

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In 2010, after many years of trips to multiple doctors, it was confirmed I have fibromyalgia. I was excited to finally have a diagnosis and just as happy to know I wasn’t making it up. For so many years, I had been told, like many others with this diagnosis, that it was all in my head. What I didn’t know and would soon find out is there is no cure for this pain and what treatments (medications and/or physical therapies) work for one person do not work for all. I have learned over the last seven years how far I can push myself before I am down for the count.

The most agonizing part for me, to this day, is getting my family members to realize I did not choose this. I too get exhausted of hearing, “I’m sorry I can’t do that,” or “You’ll have to go without me, I hurt too bad.” I’ve had to realize the way I used to approach life, full of energy and a “let’s go” attitude is part of my past. Even the best-laid plans don’t always work out. When family gatherings involve being outdoors, I am limited in what I can do. We used to go hiking and hang out at Natural Reserves and Parks, enjoying the beauty God gives us each day, and now I miss out on those good times.

I was blessed to work for a large company for 16 years, and last year, this month, my disability with fibromyalgia and degenerative disc disease of the lumbar spine forced me to retire early — 10 years early. Thankfully, I had profit sharing that helped finance our lives until I qualified for Social Security Disability. Learning to live on a fixed income has been a challenge. I never fully understood what that meant until it was my turn.

I miss my flower gardens. Every year, my husband and I would plan what we were going to plant, drive to the home improvement centers, pick out the plants/seeds and pick up bags of mulch and get busy weeding and setting rows to plant our flowerbeds. I haven’t planted a simple flower bed in over four years. The last time I attempted it, I had to lay flat on the ground because the pain in my back was not conducive to kneeling or squatting down. Even sitting on a garden stool was too difficult. But I was bound and determined that a little bit of pain wasn’t going to stop me from something that brought me and others such joy! As I sit on my porch this season, I see round planters with weeds and debris, and it makes me sad. I hope there will come a time when I can plant flowers and enjoy them again.

I take an antidepressant that helps with the pain and the depression, NSAIDS to help with pain and inflammation. Due to my restrictive lung disease, my doctors and I agree that being placed on opioids would cause problems with my breathing. So I deal with it in any way I can. The fatigue I have experienced comes in waves. I used to be able to fall asleep at the drop of a hat, and now insomnia, associated with the pain, causes many restless, wakeful nights.
When times like these occur, I read my Bible, pray, color or play games on my phone.

I could dwell on all the things I have lost since receiving the diagnosis, but that would take away from the many great friendships I have made. I have learned I am not alone struggling to live each day to the fullest. When I hear the phrase, “got spoons?” I totally understand. My spoon level is always depleted, but I push until I just can’t go anymore. My dad always used to tell me he would sleep when he was dead — he had too many things he wanted to do while he was living.

It used to make me sad that I couldn’t play with our grandchildren outside, but then I realized I could do things with them to make memories, just different ones. We color together, play board games, make cookies and cakes. We watch DVDs of their favorite movies, and we can act goofy together. I’ve learned it’s not about the quantity as much as the quality. Being diagnosed with this disorder taught me to slow down and make time in my life for what matters the most: family and friends.

The hardest part for me in the year since I retired is realizing my limitations and not being ashamed to ask for help. I have always been the caregiver. Cook, maid, bottle washer, and laundress. I’ve had to realize if I want to have good days, I must ask for help with daily tasks.

I use a small fold-up stool to sit on when doing dishes or cooking meals. I am limited in how long I can stand or walk without pain. In my home, I can use a cane to move around. Out of the home, my walker with a seat is always with me. As much as I don’t like using the motorized scooters in stores, I am thankful they are available. My doctor made me realize that just as my spectacles help me see more clearly, my walker is my lifesaver when I am out in the world. I didn’t use it because I was fearful of comments that might me made. I have one speed, and it is ultra slow, but I am still walking. I am still breathing. I am blessed.

When I see new physicians for overlapping conditions and they ask me to tell them my medical history, my response is, “How long do we have, doc?” I never thought at the age of 52, I would be taking over 10 pills a day, two inhalation medications and breathing treatments. As much as I would love not to have to swallow one more pill, I am thankful I have the medications that help me function.

I am here to tell you, you can live with fibromyalgia. You can have a life. You have to choose what is your best and go for it. Some days will be difficult just to get out of bed, let alone get dressed. The next day you might have the energy to shower and brush your teeth and other days you might just have to hang out in your comfy place and rest. I take each moment at a time. I pray and hope for the best. I love ministering to others and helping them to realize that even though I live with chronic illness, I choose what to do. I am the captain of my ship. Some days I am docked and can’t ride the waves, but the days I can ride, I enjoy each minute. My tagline is #HopeAlways#HaveFaith.

The greatest benefit of being a fibromyalgia patient is I have tons of support online from other people who understand how I feel. They offer encouragement and support when, even the people we love don’t understand the complexities of this disorder.

Seven years in and I am still reimagining me and learning to do things in my life different. Adapting to my circumstances. Growing up as a child, I was taught to never give up. If you can’t see a way around a problem, then go around it, over it, under it or make your own path. I am making my way on my own path, and I can’t wait to see what is around the bend.

Blessings to all!

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Originally published: April 28, 2017
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