Fibromyalgia Isn’t A Death Sentence

Posted on Posted in Adult Women ADD, fibromyalgia, spoon theory, Uncategorized

Some days it sure feels like Fibromyalgia is a death sentence.  There are the aches and pains and flu like symptoms that seem to drag on.  The point is that you won’t die from it like Cancer.  It will make you as miserable as some Cancers and  that’s where the two end.

So many seem to have fibromyalgia these days.  Remember the ‘Yuppie Flu?’  I do because that is what my fibromyalgia started out to be.  It was the  80’s where we were told we could have it all.  What wasn’t said is some may have to pay for it health wise.

Do you see me raising my hand?  Yep, that is me.  I have always worked hard at anything I do.  Part of it is in my genes.  The other part is from being brainwashed that I could do it all and be happy.

One thing that complicated things was that I am Adult ADD and have Sleep Apnea.  The combination of the three spells disaster but it isn’t a death sentence.

I spend more than 80% in pain daily.  Does this mean I give up?  Already tried that.  It doesn’t work.  I got sick and tired of giving up.  That’s what happened.

After a five year stunt of being a ‘pajama junkie’ it was time to change.  That is when I took Flylady’s March habit of Getting Dressed To Shoes to heart.  I hated the way I felt all the time.  More important I hated the way I was living.

Then The Miracle Happened!

Today, I no longer have the strong need to have to explain myself to others.  What a weight that has been lifted off of my shoulders.  Of course I don’t look sick.  Fibromyalgia is an invisible illness and I work very hard at NOT looking sick.

The Magic Pill

I have found it.  My next question is to all that do have Fibromyalgia.  If I tell you what it is, are you willing to take it?  I really want you to think about this.  If there is a magic pill, would you be willing to take it?  What would you do for it?  Are you ready to have side effects from a magic pill that cause happiness, to first love yourself and others come next, moments of joy, feelings of worthiness, knowing your limitations and working around them, finding something you feel passionate about and do it?  Not bad side effects are they?

To The Friends And Family Of Ones That Are Affected By Fibromyalgia

I invite you to wear ankle weights for 36 hours.  Go about your time in a regular manner.  Check in with yourself at 2 pm and then 5 pm.  How are you feeling?

When you go to bed continue to wear them while you sleep.  Then the next morning check yourself to see how you feel.  Don’t take them off yet.  You still need to wear them for another 12 hours.

You are looking at a total of two work days wearing them.  How did it affect your work performance?  How did it affect how you interacted with other co workers? (remember,  they do not know you are wearing ankle weights)

Next, I invite you to wear them all the time.  The difference this time is the number of pounds in the ankle weights will fluctuate throughout the day.  How did you feel?  Did you begin to develop other problems like concentration difficulties because you had no control when the weight of the ankle weights changed?  What about itching or skin burning?  Were you walking right along and the amount of weight changed in the ankle weight causing a sharp pain from changing the weight to a heavier setting? What about feeling dizzy or nauseous?  What about loud noises and bright lights?  Do any of these startle you?

What Your Body Does Next

Continue wearing the fluctuating  ankle weights a little while longer without knowing when you can take them off.  Soon your mind and body are no longer in sync.  You begin to get false readings as to how you feel.  Your sensor has gone bad.

Then The Itching Begins

Why do you ask?  Because when the brain cannot interpret what is going on.  When all else fails it sends out a signal to itch.  Your sensor that is connected to your brain and body has become faulty.

Our body and mind can only be pushed so far before this happens. (remember, you are still wearing those ankle weights that now fluctuate in the amount of weight it is in each ankle weight at any given time.)

Congratulations!

You have just experienced what I go through on a daily basis.  Do I like it?  No.  In fact I hate it.  It has become exhausting and I want it to stop.  For me, I cannot take off the ankle weights and neither can anyone else that suffers from Fibromyalgia.  We now have to learn how to adjust.  This will take years learning because one thing that Fibromyalgia is known for is being a high maintenance illness.

To The Ones Who Have Been Diagnosed With Fibromyalgia

I applaud you for you just being you.  Have you ever seen a duck floating in the water?  It looks as though it is floating along.  What most don’t know is the duck is paddling furiously just to stay afloat.  I know it and you know it.  I am hoping someday others not affected by this illness will know it too.

As For The Magic Pill

I have decided to wait until next Wednesday to reveal it.  I want you to give some thought as to what I wrote.  Don’t worry, next Wednesday will be her before you know it and this magic pill is worth the wait.

In the meantime, let me know if you agree or disagree with how fibromyalgia feels.  I welcome your comments and thoughts.

May 12th is Fibromyalgia Awareness Day.  Go to this link to find information about it.  For the The 15 Best Fibromyalgia Blogs Of 2014 click on the link.

(Note:  All information in this post are from views and experience from Marilyn Foster and are in no way meant to give ones a diagnosis.  The information shared is based solely on her experiences.)

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17 thoughts on “Fibromyalgia Isn’t A Death Sentence

  1. I don’t have Fibromyalgia, but I do have chronic back pain and an unhealed torn rotator cuff. The analogy of wearing ankle weights that constantly change is perfect.

    1. Chronic pain wears a person down just as much. I have had a difficult time explaining fibromyalgia to the lay person. The ankle weight analogy is the closest I have found and hope to continue explaining it in this manner. Thank You For Commenting. I have a third cousin that has a torn rotator cup and I can see in her eyes how painful it must be.

  2. What a great piece on this. I too suffer from fibro. You used an excellent illustration for somebody who doesn’t. Thank you for spreading awareness!

    1. You are very welcome! It has taken a long time finding the words to explain fibromyalgia to the lay person as you know there is so much to this illness. That is why no one can seem to narrow it down like for example a broken arm. The doctor sets it and one let’s it heal. The patient is given pain pills to rid the pain. When someone with Fibromyalgia asks for it, a red flag comes up. I manage mine on a cocktail of medication where one doctor is involved. I have found this to be the solution for me. None are pain medication. One is an anti inflammatory one. Thank you for commenting.

  3. I don’t generally post on your blog, but I read regular. For me fibro feels like the muscle pain you get with influenza. Sometimes I have a fever, low grade, just enough so I feel it.
    I’ve worked through the pain so often (as many women do) so when I say I don’t feel well, well it doesn’t mean much.

    1. I hear exactly what you are saying and know what it feels like. This coming Wednesday I am going to write about how I have overcome how I no longer let it bother me when I tell someone I have Fibromyalgia and don’t get sucked into whether they believe it or not. It is frustrating when many don’t believe you. THe important thing I have learned is that I believe me. None of us want this illness. Today I take that energy I used to use to think I had to convince someone I was in pain to using the energy to look for solutions that will help take away the pain and getting enough sleep is very important along with it being restful. Thank you for commenting.

  4. What a wonderful post! That is a great analogy and exactly I have been feeling lately. I was trying to explain to my family that it felt like I had weights tied to my arms and legs. Thanks for sharing your experience!

  5. Very good writing, Marilyn. My pain hits me hard m the afternoon and it feels like I have the flu.

    1. Thank you Lori. I am affected by the barometric pressure and most afternoons I have to take a nap. What has helped me most are the nine habits I do every day. That said, after coming back from a trip to Iowa to see my great aunt, for some reason I am having trouble getting back into the swing of things. We just need 4 days in a row of sunshine and nice weather in South Dakota. We are all patiently waiting. Thank you for commenting.

    2. Thank you Linda. Yes I have a few other things that certainly don’t help with the fibro one being severe sleep apnea. If I don’t get enough time on my machine I suffer. Thank you for commenting.

  6. Thank you Marilyn. I have fibro and other chronic illnesses. . Thank you so much for writing on it. Hugs

  7. Very good description of fibromyalgia, Marilyn. I know, because I have it too. I’ve been unable to work for a little over 2 years now, but have had it a lot longer than that. Thank you for putting this together to make people aware of what it is like to live with fibro. Peace. 😉

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