Peace of the Day & The 4 Stages of MS

Morning light has not begun to filter into my room yet. Crickets chirp in a rhythmic yet random symphony of muted tones. It seems about 3AM, a frequent time for me to awake. One of my most loved and most disliked times. Love for the immediate pleasure. Dislike for knowing that sleep will once again befall me and this moment will be gone, to be replaced by hot temperatures and hours of air conditioning.

But for the moment it is love. With the windows open, a few stars visible, I stare out into the darkness and listen. Crickets blend with birds as the day starts to awake. A scuffle or two by a small mammal puts a pause on other sounds. Then the chorus begins again. Stars fade into sunlight.

I awake, close the windows and feel the cool air of the conditioner start to protect me from the impending 100 degree day.

Today is Sunday. I greatly enjoy our sermons but today I chose to spend the wee hours enjoying Gods gifts then slipping into a much needed, restful sleep.

Oh, how appropriate. Marley's "No woman no cry" just came on. Wow. Wonderful flood of memories and feelings from years of emotions. And appropriate that it would come on now. When I woke at 3AM my body was full of angst. Angst caused by the feeling of no control. I emphasize feeling because I do have control, it just needs to be located and encouraged.

When first diagnosed with MS my goal was to survive. Simply survive. As that became easier I learned how to redefine myself to fit within my ever-changing boundaries. But at times I have let the disease control my life. Not a good thing! The best of course is when we can thrive with MS.

FOUR stages of living with MS:

  • Surviving MS
  • Redefining thru MS
  • Controlled by MS
  • Thriving with MS
Surviving MS

Survival mode comes in two ways. First and foremost it kicks in when a relapse hits or when one is first having symptoms of MS. The second is a self-imposed survival mode of rest and gentleness. Find a good doctor, have a good support group, have a great attitude, learn as much as possible about the disease, be kind to yourself. Be very, very kind. Listen to your body and rest. Slow down. Find a balance of medicine that works for you and your life style. Slowly gain your strength back. Do not rush. Steroids, NSAIDs and other short term medications aren't that great for you. Find gentler, alternative routes. Take care of the big picture. Reduce stress. Let go of the small things. Start the redefinition process.

Redefining thru MS

There is no need to count how many times I've had to redefine my life with MS. This change is now a constant in my life. When first hit the devastation forced me into early retirement from corporate operations and marketing. That was a tough one. My career was my life. Time to redefine.

Holistic nutrition became a focus and after a two year study became certified. This was a huge benefit for my MS and overall health. Using these studies and my BS in Agribusiness, a nonprofit was created to help educate the public about healthy foods. The nonprofit as since closed but the resources are still available at During these years my practices in whole body health, yoga, and alternative lifestyles grew.

Photography and graphic design were next. After a couple of art shows and a scholarship to the Art Center, this was an exciting new chapter in my life. While both provided many opportunities and sources of income as my MS worsens so does my ability to do either one of these. No longer can I photograph an event with a couple of cameras and feel comfortable. the weather, my strength, the fatigue all play a roll into what I can do and it changes daily.

Horses have always been a part of my life but even now I have to once again redefine my limits. Wouldn't it be nice to have a horse to train? But can I do it? Could I ride a few times a week and give lessons? Not here. I'm tired of here. I can't spend another ten years watching my life slip away. How do I redefine my life without being controlled by my disease?

Controlled by MS

With so many limits and restrictions caused by MS how does one move forward in life without feeling controlled by the disease? Attitude is a good start. Mind over matter. Control the disease in my mind and I can control it in life. But this concentrated energy can be difficult. Sometimes we just want to play. We don't want to check the temperature every minute. We don't even want to say we have a disease. We don't want to have to plan every movement or redefine our lives for the umpteenth time. Well, buck up because you do and now you're sounding like a spoiled child. Think of diabetics and their daily diet restrictions. Alcoholics and their sensitivities. It's all the same. Don't even let the disease get a holt of you to begin with.

Thriving with MS

This is where we want to be! Thriving with MS. By using what we've learned about this disease we can become a better person building a life that thrives. Take a good look at where you are and what your boundaries and limits are and then set a few milestone markers of where you want to thrive. Write these down. Don't be harsh on yourself or put down too much, just some general guidelines to get you started.

Be honest with what works and what doesn't. Riding is great for me but not when it's 100 degrees outside. Writing is very good for me as well and can be done near the A/C. Go through your own list and make a loose plan to find your thriving point.

Be the Star

As we saw this morning when the stars fade into daylight, think of yourself as a star. Temporarily fading into survival mode, coming out at night in control, flowing with the rhythm of the earths cycles....we are all stars looking for our path to thrive.

What do you do to thrive with MS?

1 comment:

Unknown said...

Thank you for this x