Tuesday, May 15, 2012

Fibro Dumpty Had A Great Fall

I've had Fibromyalgia for seven years, been in remission from CFS/ME for five years and had that Fibro beast managed for about three years, give or take depending on the week. So what the hell is wrong with me? Why did I decide to challenge Fibromyalgia? How come I didn't take my own word for it, that this illness is pretty much as awful as it comes? What did I think was gonna happen if I answered the unsatisfied call deep in my soul to live a normal life? Had Samantha Stevens twinkled her little Bewitched nose, my fairy godmother waved her magic wand or the trailing wishes of a shooting star just come true? Did I honestly believe if I prayed hard enough or thought positive enough or acted healthy enough, I actually would be? Humph.

Whatever madness my brain existed in these last few months, something was radiating out of me. A need buried down inside that's never really gone away no matter how hard I try to convince myself I have accepted my fate. I was angry, miserable, desperate and sorrowful. Mourning such a deep loss, the loss of life as a healthy person. This mental relapse, refusal to accept my health problems, seemed to come from nowhere, rising up like Moby Dick in the night. Blindsided, I set out to challenge the very core of my existence by proving to myself if I kept a clean house and exercised regularly and put on makeup everyday, actually leaving the house to exist in the land of the living, I could stand to live this life forever. As long as I could do just those things, keeping to an active schedule of my own devise, I could. I have done this to me many times before, but this time my body kept responding so I kept pushing. Knowing the inevitable did little to soothe my stirrings of discord or curb this irresponsible behavior. I think I actually believed it was over and I was just babying myself.

And then Mother's Day came, the same day my body finally got fed up with my delusional mind. I woke up hurt and sore, puffy and crying. Putting one foot in front of the other was way more than I could do. In the back of my mind I knew it was over, my mad dash to the healthy line. I could hear a grateful murmurer of finally reverberating around my mind, my body oh so grateful and relieved. Now I set about putting not only me, but my quickly imploding life back together too. Like most trauma in life acceptance is relative. Working really hard to get to the other side is critical, however I find my ability to peacefully coexist with Fibromyalgia comes in waves. I will get there, for a while. Then I am not. Push to the crash, and I will get myself there once again. So now I sit here waiting to see how long it is going to take all the king's horses and all the king's men to put Humpty-me back together again.

Thanks for joining,


  1. you described me to a tee....exact...stuff...i wanna be normal...fibro leave me alone...i dont want to play your game anymore...i want to go and do like i like to ...i want to sleep at night .... i want my energy back.....but i slide back just like you only to realize the delusion is true.....i am not normal...i dont remember reading something right after i read it...i am a child of God...no better or worse than anyone one else but alas......i feel different..{{{{hugs}}}}..thank you i dont feel alone...<3

  2. My heart goes out to you. We face the ups and downs of fibro, each in our own way. Some days are better than others but it is always there, a shadow that never quite goes away. I am so tired tonight, I can hardly see to type, but I accomplished a few things today, so I guess it was worth it. We do what we can. Take care.

  3. I could not have described it better if I had tried. I tell myself, if I just clean myself up, behave normal that I will be normal, but my body says something else. And I had my crash just a few days before Mother's day also. I feel like I have given up. I have been terribly distressed, depressed, and along with about a dozen other feelings all rolled up into one neat little package. I have been fighting this battle since 1999 and I am at a bridge that I am not sure I want to cross. I keep telling myself that things will get better and that a medication will be discovered to help people with Fibro and CFS but I brain does not believe it and I feel like by the time they do it will be too late for me. I read an article today about Fibro being progressive for some people and believe me. I know from my experience that it is....... for those of you who wonder. I do not care what anyone says. I have lived it and each year it gets worse. I like you had a little glimmer of hope to be blown clean out of the water and now I am at rock bottom and I am tired of pulling myself up for the pit. I wish people who smirk when you say I have Fibro/CFS could just live in my world for 1 month. Spending everything you make on meds, vitamin supplements and doctor bills and not being able to sleep at night without almost ODing on meds just to sleep for 2 hours. I feel like I am living a worthless life and I can not pretend anymore. I know that there are many others that feel the same as I do but I still feel alone. I have no immediate family support. I seldom see my family. I can not remember the last time my dad, brothers came to my house. My daughter is supportive but she also has Fibro/CFS and a couple of other illnesses and I always feel that I have to pretend and stay strong for her. My Aunt is there for me but she lives 400 miles away. We talk regularly and I visit as much as I am able but the last couple of years between the money and miles it has been hard to travel. If only people realized that disabled people are disabled for a reason. If I were healthy I would be working and not leaving in poverty. I filed for food stamps and just got approved.... $16.00 a month and I live on $922.00 a month and try to pay my bills and eat, buy meds, grass cut, taxes on a car and a house. Insurance on a car and house. UNBELIEVABLE....... I did get approved for part of my medicare to be paid. THANK GOD. But that only allows money for necessities and nothing left for clothes, can hardly afford gas at $3.50 a gallon. I have gone thru my saving since I have had no insurance between 2001 and 2007. Can you believe you have to be on medicare 2 years before you can get medicare? How surreal!!! But they can waste millions/billions in Washington. People doing without meds and buying the cheapest thing in the store to get by. If living on $1000.00 a month ain't living in poverty what is? I know that there are many who do not have as much as I do and I try to stay focused but I got to admit when I got the $16.00 in food stamps I did not know whether to laugh or cry... My prayers are for others who suffer like I do. At least I do have a doctor who prescribes pain meds and believes in Fibro..... So yes Leah I know exactly where you are today, mentally, emotionally and physically.

    1. Should have said that you have to be on disability for 2 years before you can get on medicare...........

  4. Oh Leah, your experience resonates SO much for me. I go through the same cycles of denial and acceptance, push and crash, loss and resilience. It truly comes in waves, and every time I think I'm "done," I learn I'm back to the beginning again. I wrote a post on my blog about just this feeling (http://livingwithcfs.com/a-new-beginning/). Thank you for sharing this struggle with us, and I hope that this particular "wave" is short-lived for you.