How has fibromyalgia affected you as a mom?
I was first diagnosed with fibromyalgia when my children were teenagers. It was a difficult change to handle because those teen years are challenging anyway, but even more with chronic pain and fatigue. I could barely manage to go to their school activities. The metal folding chairs were hard causing my tailbone to feel like it was cutting into my flesh. I was so exhausted before the event was finished I could barely handle walking through the crowd afterward just to go to our car. They did not always understand why I only attended a few of their special events, but they were always glad when I could be there.
It was nearly impossible to peel my body out of bed in time for them to go to school because the muscle fatigue made my head, arms and legs felt like heavy weights. I also did not always hear the alarm. Thankfully I could trust they would get up in time for the bus. They grumbled about taking the bus because I took them to school before fibro invaded our lives. Of course, activities before school hours were out of the question. One of my teens was most affected by this decision.
It was all I could do to handle an argument with one of them. I found it important to pick battle carefully to avoid being stuck in bed for a couple of days. The stress caused my thoughts to become so jumbled part way through. I had to set a timeout sometimes to discuss the issue later. Thankfully, it gave both of us time to cool down and think the issue through. The intensity had diminished and my head had cleared the fibro fog when we were able to finish our discussion. Some of these arguments were more easily resolved than others.
How do your children inspire you to keep on going?
My children are adults now and I have six grandchildren with fibro in the mix. I think their teen years caused them to have a greater sensitivity toward the symptoms of my illness. Since one of my children grew up with fibromyalgia, she is a tremendous cheerleader now. We share helps and tips for coping better with fibro with each other. My other two kids are very understanding. They can read my expressions and adjust by changing the activity level or re-direct conversations to reduce the stress for me. They also help by coaching their children about their behavior just before we see each other.
What advice do you have for other moms with fibromyalgia?
I believe you can help your family understand your struggle with fibromyalgia by explaining in simple terms what you are feeling and why. It is important to share with them what they can do to help you to be available for them more often. I found that using the term fibro or fibromyalgia caused more resistance. Sharing symptoms they can identify with helps them empathize with you. It is easy to get crabby with the ones who are more of a challenge in daily life but remain calm for both of you. It may take a few times doing this, but eventually, they will begin to make the necessary changes you need to be more available for them.
What do you wish your children would understand?
I think it is hard, now that they are adults, to be patient when I am not able to stay on top of birthday cards and gifts or when I can't see every one of them in one visit. I have one who lives several states away. Navigating airports and security are very taxing on me, so I am not able to visit with her and her children very often. They are great about dealing with their disappointment when I apologize and explain the problem, though. Fibromyalgia has certainly put a twist on parenting, but I also think it has created a stronger bond for us.