first published on GGMandy blog
A Day in the Life of a Fibro Warrior
As promised, here is the first letter; written by one of my dear fibro friends, Bettie Gilbert. I am sharing these letters to help you better understand what fibromyalgia is doing to us. I met Bettie through blogging. We were both writing about our chronic pain and we realized that we were on the same journey together, both of us having Rheumatoid Arthritis AND Fibromyalgia AND we both have roots in Ohio and Wisconsin, too! Isn’t that neat? Read her words here. Maybe they will help a little as you try to understand what is happening to us and how you can better relate. God Bless.
Hello, My Friend,
I am so thankful that you asked how I was doing the other day. You see, on many days it’s hard for me to get out, and I really do appreciate your concern. Sometimes when people look at me, it’s hard to tell that anything difficult is going on because much of the pain I feel is not outward. That’s the way with Fibromyalgia: it’s called one of the “invisible illnesses.” But my Rheumatologist has given me a real diagnosis, and the pain of Fibromyalgia Syndrome is often complex and hard to understand.Could I share with you what some of my fibro days look like? Click To Tweet
When I wake up in the morning, usually it’s a struggle to get out of bed. Even if I have slept, (but many nights I do not sleep well,) I still wake up dragging and feeling like I am walking through concrete. My Doctor has told me the term for that is “un-refreshing sleep,” and is common with Fibro patients. After I have my breakfast and my one cup of coffee that I allow myself, I might get a burst of energy and feel like I can finally catch up on some of my activities.
However, from past days in my life,
I know that I had better pace myself, or later on, I will pay for overextending myself with “post-exertional-malaise.” That’s the term for the over-exhaustion and pain that will likely hit fibro patients 24 to 48 hours after a time of physical exertion, or even heavy emotional stress. Because Fibromyalgia is a dysfunction of the nervous system that remains in a constant state of “fight or flight” the edge of that nervous system is usually quite close to the surface. It’s important to balance short times of activity with times of rest in between.
I have been trying to listen to my Doctor’s advice, to be more aware of my limits, and to be kind to my body during this season of chronic illness. So if I sometimes have to cancel our plans, maybe you can better understand where I am coming from. I don’t enjoy missing out on many of the ways that we used to connect. But I pray that we will find new ways to stay connected and that our friendship remains intact even through these many changes. Having the support of people who care for me is a blessing that I do not take for granted.
Your Loving Friend,
Read more of R.A. Seasons by Bettie GilbertCould I share with you what some of my days look like? #fibro #thisisfibro #fibromyalgiaawareness Click To Tweet
Reminder : I am a patient, not a doctor. What I am sharing comes largely from what my doctors taught me and some of what is discovered in my own research.
The purpose of this series is to inform. I pray you will be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.
You can find Bettie sharing from her multi-generational home in the far northern suburbs of Chicago. She is on a journey of walking forward with Jesus, in the middle of her own pain and weaknesses from multiple chronic illnesses. The beauty of nature is a joy that always calls to her, as well as the joy of her family and 9 young grandchildren. She and her husband have been married for over 40 years and take great joy in their weekend coffee breaks together.