Embracing the Squirrel

Imagine if someone told you for every good day you have the rest of your life, you would have three bad ones. Every week you would have only two good days. Every month you would have only eight good days. Every year you would have only 96 good days, the equivalent of about three months.

Now imagine that you don’t get to choose when you have the good days. You don’t get to count on the good days coming on a regular schedule. You don’t get to know how many good days you might get before you have bad days again. You can’t plan anything in your life without knowing your plans won’t fall through or be ruined at a moment’s notice because there is nothing you can do to keep the bad days from showing up.

Imagine living like this for most of your life. Imagine what a drag you might seem to your friends and family. Imagine what it must be like for other people to have to listen to your complaints for most of their lives. Imagine the burden you would feel like on everyone around you because you not being able to keep up means you drag them down, as well. Imagine raising kids through all this. Imagine missing years of school activities and family get togethers because of this. Imagine disappearing from general society because you can’t bear the drag you’ve become on the people around you.

Let’s start over.

Imagine if someone told you that your existence on this earth would change lives in a variety of ways. Every week you would have an opportunity to do something crucial in someone else’s life, every month you could change history, and every year you would be loved for being there when no one else was.

Now imagine missing all those opportunities because you had to be at work, or because you were in a bar drinking with your friends, or because you were able to spend all your money on shopping and eating out.

Imagine the rest of your life being filled with people who were so glad you showed up for five minutes in their lives in the middle of the night, so thankful someone out there said exactly the right thing when they needed it most, so grateful someone else had the time to notice they were having a bad day, too. Imagine being thanked for your kindness when all you did was log onto your computer.


You aren’t a drag just because you are stuck. Free your mind. Create the world you dream inside you. Share what makes you feel happy. Find others who help you laugh.

Imagine finding out at the end of your life how powerful you were in other people’s lives.

Preparing for Flares.  Yeah, it’s depressing, but you know what? I like the person I’ve become.

4 thoughts on “Embracing the Squirrel

  1. Hello,

    I am a student journalist from the UK, currently studying at University of Technology Sydney.

    I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.

    I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.

    I wondered if I would be able to speak to you for my story?

    Kind Regards,

    Emma Louise


    • I’m happy to help. When I was first diagnosed, ‘fibrositis’ had barely been named, and was so synonymous with depression that it was almost looked upon as a mental illness by some doctors, and especially the psychological field. I have been so relieved to feel validated with new discoveries even just in the last couple of years. I had some really bad years but seem to have figured out how to live with this, because this last year has been my best in at least a decade. I was saying 30 years ago it feels like the nerve in my back is being microwaved, and like my body feels like it’s having a migraine. Having Asperger’s compounding the pain with severe overstimulation has been a nightmare, but it’s also been my salvation since I am able to think logically and objectively, and have solved several major problems since 2010. The key for me was to slowly get off medications and start over with nutrition and ASTYM, which I do NOT recommend anyone with severe fibromyalgia do without careful planning and medical supervision. The reason this was key is because I also found out I’m diabetic, and I got absolutely no relief in any way until I got that under control. Five years ago I was so disabled I could barely walk across my house and needed assistance with taking care of myself. Now I’m able to shop for my own food, clean my house, and do regular workouts. I’m far from cured, but I have my life back.


      • Hi Janika,

        Your story is one that I would love to write about but my feature is actually on CFS which I thought you had so I don’t think that I will be able to write about Fibrositis. It is great to hear you are recovering and to hear you share your story for those across the world.

        Kind Regards,

        Emma Louise


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