Fibro Fog: Tips for Communicating

By Melissa Swanson • www.ProHealth.com • August 13, 2017
Ask anyone who knows me and they will say that I like to talk. I always have. I’ve been going through old pictures, report cards, etc., and it’s no surprise that every year the Teacher’s notes say “Melissa likes to socialize too much.” If I wasn’t talking to someone in front of me, I was talking on the phone. I tell people that I talk in my sleep because I don’t get enough of it done during the day.

However, things have changed.

According to a 2015 review in Rheumatology International, some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with fibromyalgia.

Fibro fog can affect communication in different ways. Some symptoms include:
short term memory loss
becoming easily distracted
difficulty having conversations
inability remembering new information
Fibro fog has made it so that I really hate phone calls. Phone calls are not only challenging, but I find it exhausting to focus on a phone conversation. I have a lousy short term memory, so even if I answer a telephone call, by the time I am done talking, I may have forgotten most of the conversation.

When we are on the phone, we’re often surrounded by other noises or trying to do other things. Noises and multi-tasking can make it difficult to completely pay attention to the conversation.

Fibro Fog adds to the stress of phone calls. I feel so dumb when I can’t spit out the words I am trying to say or having to have the person on the other end repeat what they have already said.

Texting or Emailing is easier for me.

Saving my text messages and emails is like having a back-up disk for my memory. I can reread it as many times as I need to and at any time of the day or night. I can reply in my own time when I am not feeling “foggy” or rushed. It gives me time to find my words and to reread my message several times to make sure that it expresses what I am trying to communicate. Texting or emailing makes setting appointments, renewing prescriptions, etc., so much easier for myself.

I often let phone calls go to voice mail so I can take the time to listen to the message and make any notes I need before I return the call. When a good friend, family member or physician calls, I will inform them in advance if I’m having a foggy day. I will tell them “Today isn’t a good memory day and I am having trouble finding my words, so bear with me.”

My friends understand and text me before calling and ask if I can talk.

As a Fibromyalgia Health Advisor, my phone skills are extremely important. I need to be able to listen to what my clients are telling me and to respond properly. Whether I am returning a call from voice mail or talking to a client, I’ve found some tips to help make it easier.
I schedule my calls for the times during the day that I am at my best.

I never make a phone call without a pen and paper in hand. I have a notebook where I track voice mail or previous call information.

Prior to making a call, I make notes on what I want to ask or discuss.

I try to eliminate as many distractions as possible. I will go to a room where I will not have background noises or a barking dog.

I use my notebook to write notes during my conversation. As I am listening, if something pops in my head that I want to bring up, I will jot it down, and I always look over my list before the call is over to make sure that I did not forget anything that I wanted to discuss.

A voice to text app is another option rather than talking or texting. I personally have not used any of these apps, but I have several friends who use them and say that they are very helpful.

It is so important that we not allow our fog, pain, or fatigue to cut us off from communication. We cannot allow ourselves to become isolated from the outside world.

I would love to hear about ways that help make communication easier for you.

Gaga for Lady

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Mallory Shamim is a young, enthusiastic woman who has lived with fibromyalgia, chronic pain, and chronic migraines for the last three years. She puts a positive spin on her life as a chronic pain patient and wants to help others feel better about their prognoses. Mallory is on her way to becoming a wonderful advocate. Check out her blog at Chronically Invisible

Written in G ♯ minor and at 120 beats per minute, the synthetic sound that rocks with pop beats became instantly recognizable. There she appears in a one strap black latex jumpsuit, glistening as she emerges from the water wearing a mask that looks as if it has been made from a dlady-gaga-poker-face-tablet.jpg.b2bd67a4fd3f952f0f8dab0968f8a80bisco ball. There she is in all her glory – beautiful, eccentric, bold. Since that first image of her, I have been a fan of this extraordinary woman.

Lady Gaga, who has since been named, Mother Monster by her followers, has never apologized for being outlandish. She is known for being provocative and unconventional in her ways of entertaining, hello remember the Meat Dress? She is also known for being completely open about her life and past and experiences.

But, Stefani Joanne Angelina Germanotta has been in the news as of late not for her music, but for revealing she suffers from chronic pain and fibromyalgia.

This week alone this mega icon has canceled her European lag of her tour and posted her pain. Not many people are open about their private lives and for any person who suffers from anything, being open to the public critique and ridicule makes speaking out harder than just being mute, putting on a smile, and saying “Everything is fine.”

So why is her canceling her tour, coming out as suffering from Fibromyalgia, and promoting a documentary about her life behind the lights of stardom entitled “Lady Gaga: Five Foot Two,” news?

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Lady Gaga’s public admittance is bringing this disorder that is estimated to affect more than 100 million people* to the forefront. I believe her coming out and being truthful about the chronic pain she lives with is starting the conversation that hasn’t always happened. If a star as huge as Lady Gaga has chronic pain and fibromyalgia, then it solidifies that it is real because she is perfect, has a perfect life, and can’t possibly be faking it. Right? She’s never lied to her fans or the public about any aspect of her life, trauma, and beliefs so why would she make this up?

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“I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.” ~ Lady Gaga

Her documentary is being looked at by some as potentially a negative based on how she portrays herself and chronic pain. Some people are saying they’re scared of how this will portray chronic pain because she, as a celebrity, has access to treatments and medication that those of who aren’t millionaires don’t have. I am sure she is with the best doctors and using the best “treatments” available because she does have the money, but I think speaking out about it is more of a win than whatever she shows us in her documentary. The words “chronic pain,” and “fibromyalgia” are now on the radar of millions of people thanks to her. I’m sure some of her fans who have never heard of fibromyalgia looked it up, are trying to understand it, and maybe even finding people they never knew who suffered are suffering all simply because she put it out in the universe.

I might not be saying it from a microphone to millions of people at once but I have a voice. I do not shy away from talking about what I have, what I “suffer” with. And, like Gaga says in her statement posted today:

 I use the word “suffer” not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth. I’m a fighter.   

To me Lady Gaga brings hope for awareness, understanding, and acceptance. She shows that a celebrity, a world-wide icon at the end of the day, struggles with the same issues you and I do. She is more than the woman we see in her extravagant videos or on stage doing amazing choreography in heels that most of us couldn’t even stand in for a second. She. Is. Human.

  • “Living with pain” U.S. Pain Foundation. Sideless Box Design Co. 18 Sept. 2017.

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