ME/CFS & Fibromyalgia Has Robbed Us Of Choices

It’s a blessing to wake up every morning in a free country knowing that we have choices that many people in other countries don’t have.  We have the right to read the books we want to read, we have the right to say what we want to say (most of the time), and as a woman, I have the right to work, vote, and live my life as I choose.  Many women in other countries don’t have that luxury.  They are governed by their husbands and or countries’ laws and have no say in any decision. 

While I know that I wake up every morning in freedom, in what is heralded as the greatest country in the world, I can’t help but feel like a prisoner.  Even though I have been sick for 20 years, I never really started feeling trapped, or like a prisoner, until I got to the point where my functioning on a daily basis decreased dramatically about 7 years ago.  Ever since then, I feel as though all of my freedoms, choices, and decisions have been stripped away because ME/CFS and Fibromyalgia has made all of those for me.

I am forever thankful that I did get back out to work a few hours a week because it has been a huge help for me emotionally.  It has been a blessing for me in many ways but it has also made me realize how much I’ve missed during the time that I wasn’t able to work.   The major realization I came to when I returned to work was that I no longer had the choices I once had as a healthy person.  CFS & FM have taken away so many of the normal, everyday choices and decisions that everyone else gets to make and takes for granted.  I no longer have a say in what I want to do with my life or the type of job I want to have.  ME/CFS & Fibromyalgia have made those choices for me.

All of the skills, hours of management experience and achievements means nothing now because my body can’t repeat any of that.  I still have the knowledge, I still have the drive, I still have the want, but I’m stuck in this body that doesn’t work and I always feel so trapped.  Right now more than ever I would love to be able to make more money.  My husband lost his job at the end of the year.  Before when something like this would happen I would just work more, or get a second job.  But once again, CFS & Fibromyalgia have made that choice for me.

It is scary not knowing from day to day what your body is going to allow you to do and what it will not do.  Not having control is the hardest part for me because I am a control freak and this is one thing that I can’t control. 

Choices and decisions are the American way.  Having freedoms to come and go as we please and live our lives as we please are all part of what makes this country so appealing to foreigners.  People flock to the United States to have the “American dream”.  My American dream would be just to be able to wake up and not have my life decided for me by my body.  I want to walk down the street and feel truly free for once in my life – no pain, no sickness, nothing holding me back from living a full and meaningful life.

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  1. Oh Sandy, I know exactly how you feel. It’s hard isn’t it. My Mum bought me a book called “The Motivational Mind”.. and I was so offended and upset. I HAVE the motivation!!!! My body just won’t let me do anything at the moment. It was so awful, I’m sure she was only trying to help but no-one gets it do they? x P.s. Just got back from the dentist for my equilibration thing, it was fine but back in 2 weeks to have the final bits done x

  2. I hear you! Good posting that explains very well what we go through every day. It’s the not knowing that is so frustrating. I have made so many plans that needed to be canceled because when the day came, I just couldn’t handle it (whatever that might have been).

  3. Hi Sandy, I totally understand and sympathize with what you wrote. Thank you for sharing your thoughts and experience. May you be healthy one day again!
    I suffered from CFS for 15 years and remember myself thinking that if I ever get well, there will be no excuses to ever be unhappy again. I have recovered and have been well for a couple of years now, but the promise has been hard to keep. Surely, good health is the main factor of happiness. Your post reminded me about the importance of being grateful for feeling good. I should be happy just because the fact that I have no more symptoms of CFS (that was horrible!) I wish everyone with CFS could recover and enjoy their lives again. That´s why I´m sharing my experience with others (please see

  4. Dr. Nash Petrovic’s protocol has helped me tremendously, and he has a 97% success rate. It has been a godsend.

    I wish everyone would try it.

  5. Thanks for the information. I’m an electrician, which is quite a physical job but at the same time, I’m always overly tired, whether it be day or night. I’m going to look a little more into CFS. Thanks.

  6. Thanks for sharing this. We often don’t realize what we have until it’s gone, so it can be eye-opening to hear from someone who faces these kinds of challenges.

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