That was Then…This is Now Life with Fibromyalgia

Alarm rings at 5 a.m. I jump out of bed to start making fresh blueberry muffins and the evening’s crock-pot dinner. Out the door by 6 a.m. for a full day (up to 10 hours) of work followed by whatever after school activity my kiddo had for the night.

The night ends making sure our daughter’s homework is done, bath & bed, leaving me a few hours to pick up the house, play on the computer and watch TV before going to sleep (roughly 10:30 p.m.)

Flash forward 8 years…

Alarm rings at 6 a.m. Slowly, I get out of bed to get my morning medicine. I lie back down in bed hitting snooze until 6:30 a.m. The next 30 minutes I get dressed and apply my makeup. Again, I return to bed until the last alarm goes off at 7:15 a.m. I grab my bag and ease my way down the stairs to head off to a 7 hour work day. After a short drive I am home, changed into my pajamas and laying down on the couch for a nap.

I can’t recall the last time I made blueberry muffins so a week ago I decided I would bake for my family. The blueberry mix packages sat on the kitchen counter for 8 days. I finally had enough energy to make them today. It isn’t as if it takes a lot of energy to open 2 packages, add milk, stir and bake. Unfortunately, that is still more than I can do nowadays.

Then … I would religiously decorate the house the first of each month for whatever holiday was that month.

Now … It happens when it happens. It is November 12th and although my Halloween decorations have been put away, my Thanksgiving decorations have been in a tote sitting at the bottom of my stairs for a week. All I need to do is ask to have it carried upstairs. I hate asking. After all these years, I continue to struggle with asking for assistance.

Then …  I planned ahead. At the beginning of each month I would plan out and go shopping for the entire month of meals. We would seldom run out of grocery items and when we did I did the shopping and the majority of the cooking.

Now … There is no plan. I simply do not have the energy to think or create meals. For the past 4 years I have relied on my husband to do the majority of all cooking. We run out of everything often. Thankfully, our daughter is old enough to drive and will stop and pick up groceries whenever we need them.

I have spent a lot of time looking back at what I used to do and what I am not able to do any longer. My comparison list between then and now could go on and on. Socrates wrote, “The secret of change is to focus all of your energy, not on the fighting the old, but on building the new.”

Yes, it is important to be realistic about what you can do but it is equally important to not limit yourself to what you have done in the past. Instead of continuing to look at the past I plan on looking toward the future. Push myself, just a little and give myself credit when credit is do.

After all. I am a Fibro Warrior ~ Living Life!

 

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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