first published on GGMandy blog and here in 2018
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 as you try to understand what is happening with the chronic pain warrior and how you can better relate. God Bless.
Hello, My Friend,
I am so thankful you asked how I was doing the other day. You see, 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.” However, 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? Share on XWhen 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 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, in the past days in my life,
I know 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,
Bettie G
Read more of R.A. Seasons by Bettie Gilbert
Could I share with you what some of my days look like? #fibro #thisisfibro #fibromyalgiaawareness Share on X
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.
Thank you for openly sharing, Bettie. I can only imagine how difficult some days must be, how tender the daily balance is. My prayers are with you. Mandy, thank you for sharing your space. #chasingcommunity
Mandy, thank you for sharing Bettie’s words here. Bettie: Thank you for giving us more insight into what you are going through daily. You are an inspiration, knowing all you are pouring out into God’s Kingdom, even in the midst of such suffering. Sending you gentle hugs from afar today.
Dear Mandy, I am so grateful for the way that God has let our paths criss-cross over the years, and for the gift of your friendship! Thank you for inviting me to be part of your very special series here. Blessings love and hugs to you!
It’s nice to meet you Bettie! Oh, you are exactly right..pacing oneself so you don’t pay for it later. Such a pesky thing for me to learn but I’m trying! Hope you are having a low pain day! Thank you for sharing.
Kristi, thanks for coming by to learn. I love having Bettie share. She really is inspirational.
Bettie, certainly is an inspiration to us all!
Bettie, So glad you wrote on my space today. You are welcome anytime!
Being a Type A person, I have to fight myself to pace and not overdo.
Bettie, as always I am grateful for your honesty and ability to express what chronic illness looks like in our everyday lives. I was nodding in empathy as I read your words. Yes, yes indeed, it’s exactly as you’ve described! May you begin to get better sleep in days to come and continue to share your life as is with those who need to hear about it, and also about the wonderful way God sustains and strengthens you each day. Blessings and love to you, my friend! xo ❤
Dear Kristi, Thank you so much for your kind words of encouragement! I am so thankful for Mandy’s heart to bring open-hearted sharing here, through the difficult days we have. The Lord is so good to carry us along every step! Blessings to you!
Dear Anna, Yes, I am so thankful for Mandy’s invitation to share here! God is so good to keep encouraging us all to bear our burdens together to Him! His Kingdom is so unlike the world’s ways! He is glorified as we lift Him up in the very hardest of our days. Hugs to you too my friend!
Me too! So thankful!
It’s nice to meet you too! I’m so glad to hear from others that the pacing is a hard lesson for more than just me! 🙂 Some days I think I have it mastered, and then other days I realize I have so much more to learn! It’s so good to know that we can travel this journey together!
Dear Joy,
Thank you so much for the encouragement that you always bring to me! I am so comforted by your heart of understanding my friend. God continues to teach me more about the blessing that He brings when we share our hearts openly from the painful places. It’s certainly not something I would have chosen for myself, but I am so very grateful for the treasures that have come through the process. He is such a sustainer of our hearts! Blessings, love and hugs to you too. xo
You are so right, Bettie. The treasures have been awesome.
I have friends who have fibromyalgia – thanks for the window into your world.
Though I don’t have the same chronic illness as you have, Bettie, I can still identify and empathize with you in some areas. I’m so sorry for what you go through. Fibromyalgia is an awful thing. I’m so glad doctors are finally learning more about it and are able to diagnose it now, like Mandy’s article said. Thank you both for your honesty and enlightenment. Love and hugs to both of you!
Always learning from my friends who suffer with and from chronic disabilities. Thank You for a window into your days and world. God bless!
I too have friends with firbromyalgia and have see the ‘burn out’ when over exertion takes place. I love your honesty here. The wonderful thing about the internet is the connections we can create beyond having to physically be with each other. God Bless!
Thank you Barbara for your concern for your friends! It is so good to have friends who care and love during the hard times too! Blessings to you!
Dear Trudy, I am so thankful for your understanding and compassionate heart. I know that you walk through hard health issues yourself, and have been such a blessing as you share God’s graces. And, yes, it’s so good that the medical field is finally acknowledging the reality of fibromyalgia! I pray that new research would continue to bring helpful answers. And, I am so thankful for Mandy’s heart to share more about the difficulties so many with this disease face these days. Love and hugs to you too! xo
Thank you for your compassion Tara! I pray that my heart would stay open to always be learning also! God bless you!
Dear Lynn,
Thank you for your sweet comments here! I too am so amazed at the connecting that the internet has made possible–God has truly used that to bring so much encouragement to my own heart. I pray that others could find that same encouragement from Him. I’m glad that you are there for your friends who suffer with fibromyalgia. What a special gift. God Bless you!
Bettie, thank you for sharing part of your journey. In a sortof odd way of wonderful, it’s comforting to relate to many of your words and know that I am not alone in this. Mandy, this is a terrific idea. Thank you for listening to the guidance of the Holy Spirit.
Dear Nan, Oh I understand so much what you are saying: there is a sweet connection when we find that we are not alone in what we feel! You are in my prayers, dear sister. And, oh yes, how thankful I am for Mandy’s openness to follow God’s leading through this whole time of sharing. May the Lord continue to use all of the words that will be shared here.
Thanks for the open Letter Bettie G. Always good to see that we are not in alone in our struggle. <3
Dear Bettina,
Yes, it really is such an encouragement when we know that we’re not alone in these paths. Blessings to you on this journey!