Fibromylgias Big Dark Dirty Secret


When I started noticing symptoms of FMS I was in really good shape.  I was a dancer and I worked full time managing a department at Walmart (don’t judge me).  I was walking 5 to 10 miles every day.  I had a full and happy and healthy sex life.  I had the ability to go to a get together for my kids.  I could drive without getting lost every two minutes.  I could play games, like volleyball and kick ball.  I played a djembe drum.  This information I just found has rocked me to my very core.  I am sharing because it is too important not to share, at the same time this is information that I didn’t want.  I wish I didn’t know.  If you think it might fuck your world, please stop here.  I promise, it is horrible news.

I list those things because I originally lost the ability to do any of them.  It has taken me a week to reschedule a psych appointment.  Don’t get it wrong, I still haven’t called them, but I got a Xanax from a friend so I could do that very thing today.

The thing is, FMS has stolem my life.  It has taken everything from me.  My one consolation was that I have spent years since I was diagnosed overcoming the physical limitations/  I did this to the point that I had learned to live with FMS.  I grabbed my metaphorical balls and I got it done.  I can be in public sometimes.  I can drive with a GPS. I can go to things for my kids, I can even play my djembe from time to time.

It is all about rules, and learning about your condition.  It is all about smiling through the pain and moving on with your day.  Hell,. It has taken me months to write again.  I want to write every single day, and that has been my goal.  Up until I learned about this other thing I thought I was doing ok.  I was living a little bit.

Thing is, this new info doesn’t make it harder to do those things, it just makes it break my fucking heart because I know now…  I hate it..  but I know.

See, grey matter is your brain.  In the elderly it presents as dementia when their grey matter is gone.  In fibro patients, our grey matter is disappearing at a rate 3.3 times that of a “healthy” person.  This means that YES you are losing your shit.  Our brain fog?  That is a fibro thing in the sense that it happens because our brains are literally disappearing.

I have been utterly fucked up since I found this out.  I haven’t been able to keep up the façade of being healthy and happy.  When I tell people?  No one knows what to say.  It is too horrible to say anything.  Others tell me to do brain exercises..  Which I do, even since the Day I Read the Fucking Article.  None of those things are going to help.

I am crushed..  Splattered.  If someone stood in front of me and called FMS fake I think I might end up in jail.  I am so angry at this condition.  Haven’t we lost enough already?  I mean come on.  What the fuck did I do to deserve this?
Link to the article:



About Phoenix Rose

I am a fibromyalgia warrior. I was forced to quit my job, and I spent two years in bed trying to stop my heart with my mind. TWO YEARS. I spend so much time working on this blog because maybe I can prevent just one person from giving up, then I will have considered it a job well done. I am attending university to gain my bachelor's degree in both sociology and psychology. Fibromyalgia is not the end of your life, it is just the end of your life as you know it. Life is still sweet, and we all have something to live for. I am attending University online.. Psychology and Sociology double major. I am not selling a damn thing, I am only writing with raw honesty about this affliction that has forced me to find out just who I am now. Version 2.0 if you will. I know that I went through Marine Corp boot camp and nothing we did there was more difficult than what I now face. I talk about my journey, maybe you read some of my stuff and realize you aren't alone... that is a start. Live, Love, and Fight.

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