Those of us living with ME/CFS experience a wide range of symptoms beginning with the onset of the illness; it can progress gradually over months or years, or it can become apparent after a flu like illness or infection. Debilitating fatigue is only one of several symptoms required for diagnosis.
Our symptoms spread over a continuum resulting in a range of disability, from the inability to pursue social or athletic interests and activities while maintaining the minimum obligations of parenting and/or work, to being completely bedridden.
As there is currently no proven cause or cure for ME/CFS, and consequently, little interest or support from most of the medical community (especially in Manitoba), we are, for the most part, obliged to educate ourselves regarding our illness, treatment of symptoms, and strategies to facilitate any amount of recovery that may be possible.
There is hope. Nationally and globally researchers continue to zero in on possible causes and treatments. There is a wealth of information available in print and online to help us navigate our journey with ME/CFS. The links on this Mom Needs To Lie Down blog are very helpful places to start.
Here are 5 tips from my 6 years of living with ME/CFS:
1. Nurture your spiritual strength, in whatever way is meaningful to you.
Listening to music, connecting with nature, talking with supportive friends and relatives, doing gentle yoga, meditation.
2. Find simple moments of joy every day.
Hug your dog, savour the sunshine coming in the window on a cold, Manitoba winter morning, enjoy a favourite movie or TV show.
3. Less is more.
It's a big learning curve, especially in the early days, to realize and accept that no matter how much we want to continue to pursue all of our favourite activities and goals, if we don't reduce and pace activity, we pay the price by crashing on the couch.
4. Reach out.
There will be some really tough times. Call a trusted friend, relative, help-line or see a counsellor.
5. There are better days ahead.
With time, knowledge, acceptance and the discovery of successful strategies to lessen symptoms and couch time as much as is possible, the days become easier and life realigns with greater peacefulness.
--written by Lorilee Leslie-Cole in Winnipeg MB