“What’s YOUR life like NOW?”

"Sunrise in Tulsa"This past month has been a major test for me.  As you all know intimately, walking the tension line between good health and relapses is one we must often juggle in this life with myalgic encephalomyelitis (ME).

The constant whisper in the back of my mind that asks,

Is this obstacle going to send me into another crash?

doesn’t pop its ugly head up as much anymore.  However, I still have to deal with it from time to time.

This past month I found myself pondering that question a lot, to be honest, when I had to have two oral surgeries within ten days of each other, ended up with two massive jaw infections, and then had to have another tooth temporarily crowned which ended up being so painful I turned white and almost passed out.

As a result of the infections and antibiotics, I was unable to exercise as regular as I do, plus, I couldn’t get any massages until I was off the antibiotics.  My body went into a tail spin and I had to do the “adjustment two-step”; resting and pacing as often as I needed.

The amazing thing for me personally, though, is I never crashed.  I upped my Amazing Grass and my Garden of Life Raw Protein Shakes to four a day and was careful to not over do it.

Today, I have gotten back to my massages and exercises and am feeling almost back to where I was before the surgeries.  I am humbled and amazed that my body is now finding a way to tip-toe around obstacles when they crop up.

Of course, I still have to make choices, listen to my body’s signals, and keep my stress levels as low as possible but for the first time in 20 years I can finally say …

My life is a good life and I am happy to be alive and living it.

Interestingly, however, I have been struggling with finding purpose in the sense of

Do I have anything to say or give to those who are my dear friends and still struggling with this horrific illness.

I didn’t think I did.

That is until I met this amazing woman from England and she told me she had just been diagnosed with ME.  My first thought, was God no!  Not myalgic encephalomyelitis.

Unfortunately that is what she has been diagnosed with.   But in her diagnosis came my purpose … loud and clear.

Because of the journey I have been on with moderate ME for 20 years and severe ME as a result of toxic chemical poisoning for 2+ years, I have the ability to be there for those who have this illness in a way no one else can because I am intimate with their struggles.

In addition, my friend taught me that the most important thing those of us living with this illness can do is to reach out to each other and to speak out.

If my friend hadn’t had the courage to share her diagnosis she would have been facing this unreal obstacle alone with her family, doing this journey the hard way (as all us old timers understand).  I am so proud of her for taking that very pivotal, important first step.

Secondly, if I hadn’t decided three+ years ago to become VISIBLE and allow people into my life, warts, struggles and all, I would have never had the courage or the ability to offer a hand of help back to her.

She recently asked me what “my life is like now.”  As long as I have breath, and I am able to help others find their way to a “good life” then my life is … perfect.  I can’t think of anything that would make having this illness more worth it.

I would never have asked for this ME journey, and yet, it is in my weakness that I often find the biggest opportunities opening themselves up to me.  The trick is be readily available when they come my way.

So to my friend in the UK, thank you for giving me back my purpose.  I love you.

Determined to continue forward,

"Red Signature"


9 thoughts on ““What’s YOUR life like NOW?”

  1. Was a nice surprise to see you blogged today. The format looks so different.
    Of course of course in sharing your experiences you can remain helpful to the newly diagnosed and long time sufferers of ME.

  2. Hey girl! I can’t begin to tell you how much you changed my world by being there for me during such a hard time. You are so full of information and love and support. I am grateful every day for you! It’s having you in my life that stops me from feeling alone in my journey. I love you, I truly believe you were sent by god. A true angel.

    • Bev – Thank you. I’m so glad that I can be here to help you. That is the one thing that makes this journey easier. Knowing that we can give a helping hand to someone else who is having a tough time at the moment.

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