1 – The Daily 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.
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.
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 experience,
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,