"Throughout the years, I have found that the most important thing to remember when living with someone with Fibromyalgia is to be patient."
In 2006, I was fourteen years old. At that age, most people are old enough to comprehend things but still not fully matured enough to understand them thoroughly. So when my mother was diagnosed with Fibromyalgia, I did not realize just how difficult things would be for her and even the rest of our family. In fact, no one could even pronounce the word! Becoming accustomed to her symptoms and finding ways to make her life manageable was not that of an easy task. As a family, our duty was to notice what things triggered the symptoms and make forth our best effort to guiding our mother (and in my dads case, his wife).
Throughout the years, I have found that the most important thing to remember when living with someone with Fibromyalgia is to be patient. Though at the time, I did not know there was even a term for it, moms “fibro fog” was probably the first symptom we all noticed most and even at most times became extremely frustrated by. There were many cases where my mother would be in attempts of saying something to us and suddenly get stuck mid-sentence. The simplest things such as, “Pass me the —.” In frustration we all would yell,
“PASS YOU THE WHAT MOM?”
“WHAT DO YOU NEED?”
“GET IT OUT!”
“ARE YOU KIDDING ME? YOU DON’T KNOW WHAT YOU NEED?”
She wanted the salt shaker. We did not realize at the time but our lack of patience and yelling only made the situation worse. What mom needed was a minute to think, to remember what to call what we saw as a simple object. She needed us to be quiet so that she can concentrate. I remember vividly my mother explaining to us all finally that she did not want us to help her figure out a word when she could not get it out. Many times, she would be explaining something to us and while she would forget something as simple as a name, we would give it to her. “Oh, you’re talking about Steve, mom.” However, she wanted us to simply give her time. At this point, she was learning ways to handle her sickness. Upon the many ways was allowed time to focus. And so, patience is key.
If someone you know and love has Fibromyalgia, you may find that anxiety plays a major role in their symptoms. This is where understanding seems to fall as a factor again. Living in a house of five people and two dogs, noise is constant. As are messes, confrontations, and a bunch of other situations that can stand as stressful to anyone. For someone with Fibromyalgia, this can trigger MANY symptoms; not just anxiety. Loud music can cause headaches. And while, you and I will probably simply take an Advil and be okay, for someone with Fibromyalgia headaches can many times mean unbearable pain. Growing up, my brother and I would often times lock ourselves in our rooms like most teenagers and blast music. We thought our mom was just being an annoying mom when she told us to lower the volume. We did not always realize that our mother was most times in pain. As children, we always wanted our cousins to spend the weekends at our place. Us and our cousins meant ruckus and lots of it. “Not this weekend,” my mom would say. Though at the time we could not come to terms with this, we see now that probably meant mom was flaring, or in the midst of her symptoms for those of you not familiar with the term. We had to learn to understand that something as common as shopping all day long or attending a party with too many guests for too long of a time period could cause anxiety for mom and furthermore leave her in pain for days — or even weeks.
When my mother asked me to write on her blog, I was not sure exactly what I would say in it. She said that I would probably have to do some research on how people can help their Fibro loved ones. Once I began writing though, I came to find that was not very necessary. I have loved my mother for twenty two years and because of my loving her, I have learned and continue to learn how to make this condition as uncomplicated as possible. I find that I am on a never-ending journey to finding out more about Fibromyalgia. And so my advice to anyone loving someone with Fibro includes to ask many questions helping yourself better come to understanding. Depression is also upon the symptoms of Fibromyalgia and if we are not careful and understanding of our loved ones, they may suffer. Be patient when they are distressed by their symptoms. Give them time to think when going through what we see as a brain fart. More than likely, they are just as if not even more frustrated than you are when this happens. Trust me though, they are trying really hard to get that word or phrase out. A simple, “It’s okay, take your time” and silence will probably be very helpful for them. Never forget to love your Fibro loved one. Never stop seeking further knowledge of their condition. Remain vigilant of their feelings. Be very observant of what causes pain and what triggers their symptoms. They did not choose to have Fibromyalgia but with your patience and understanding, this journey can be a bit less challenging.
-Ashley Ann
I love you, Mom.
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