living with fibromyalgia

There is a post going around Facebook about chronic pain conditions. I read it, thinking that someone had written very vulnerably about their experience and how I wanted to leave them an encouraging comment.

At the end of the post were the words, “I’ll be watching who reads to the end of this post. In honor of anyone suffering with [insert string of chronic pain conditions] please copy and paste this in your status and then write done in the comments here.”

What? I felt like I had been deceived. I wondered whether the post reflected my friend’s own experience or whether it was just copied and pasted. I hoped no one copied and pasted it because they thought of me coping with fibromyalgia. Then I thought about how many times I would see it over the next 24 hours, and I knew that its power would become lost as everyone began to scroll past it.

When I write something about my experience with any of my medical conditions, including fibro, I want people to know that the writing is my own.

I will share two things about chronic pain. I was very blessed that my rheumatoic arthritis went into remission. I never expected this and neither did my doctor. The meds had very difficult side effects and I am glad to be rid of them.

I could not take the fibro meds. I gained 30 pounds in three months, my blood pressure went up, andn I suffered excruciating pain from acute glaucoma attacks while having great relief from fibromyalgia. Today, I have not lost the weight, my blood pressure is normal and my eye is ok, but the fibro is uncontrolled. I hurt most of the time.

In many posts about fibromyalgia, people talk about how they need others to understand why they can’t make it to events, why they don’t always feel up to talking, etc. I felt this way for a long time. Occasionally I still need a recharge day, and there are still some times that I need to choose the types of things I do. But there was a point when I realized that living in that manner with fibromyalgia was destroying my life. I was letting the fatigue control me, and I had no life and no friendships.

I have had to learn how to work and play while I am in excruciating pain. Occasionally I take a day off.
Today, I make choices about what I do from day to day. But I will not sacrifice relationships or life because of fibromyalgia. I have a career that I love. I go out from time to time. I rest afterward. This life belongs to me, not to my illness. I would like to do more. That is an admission that I am free to make. I do not expect others to understand my limitations any more than I expect them to uncerstnad what it is like to only be able to see the outline of a person a few feet in front of me and not be able to recognize their face. They don’t live in my body.

I have had to learn how to work and play while I am in excruciating pain. Occasionally I take a day off.
Why do I do this? Because I only have one chance to live fully. I don’t want to reach the end of my life and wish that I had lived differently. There are times when I really do need to care for myself and renew my strength for another day. But I also know the consequences of saying no too many times. Saying no too many times means that the opportunity will fall to someone else. That includes relational opportunity.

Yes, I have uncontrolled fibro. Yes, I live a full life. Yes, it hurts. All the time. The change that has needed to happen has been in me.

About Sarah Blake LaRose

Sarah Blake LaRose is a freelance writer and a professor of Biblical Hebrew at Anderson University School of Theology in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind.

About Sarah Blake LaRose

Sarah Blake LaRose is a freelance writer and a professor of Biblical Hebrew at Anderson University School of Theology in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind.

Leave a Reply

Your email address will not be published. Required fields are marked *