Four years ago…More than 25 years after I was first diagnosed with ME/CFS and Fibromyalgia and 6 years after I began to need mobility assistance and a full time personal caregiver… I walked  almost 200km of the Camino de Santiago: 9 days, carrying 20 kilos of backpack with all my clothing,bedding,and personal items in celebration of my health.

9 days, 202km later…Santiago de Compostela! #caminodesantiago #buencamino #miraclesdohappen

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Since that time I have done so many more things that I once thought were forever out of my reach. We renovated and opened an eco-lodge and organic farm in Spain. We moved to Vermont (the last place anyone with my health history should live…) where I became a full time organic farmer. I have been determined to do everything I could possibly do with the health that was returned to me. I was never cured. Every day has been lived according to my ability. There are always concessions and limits. My intention has been to push and expand those limits. I have succeeded beyond imagining.

 

I have always known and been up front with the certainty that once again someday, my health would limit my life more profoundly.

 

Much of past year has been a testing my limits; observing where I was being held up and doing everything I know to keep moving forward. I knew that a drastic shift was coming but chose to push as far as I could. Perhaps the last hurrah for this cycle.

 

In recent weeks it has become clear that the shift is here. Limits are sharper and tighter. Body and mind are slowing. Pain is increasing and decline is more rapid.

 

These all too brief years of broader limits have given me the privilege of not engaging as deeply with the ME/CFS and Fibromyalgia communities as I once did. The internet has exploded since I last sought out those who also live with chronic illness.  Already I am finding myself devouring every little morsel that has been published since the last time I felt as horrible as I do now. Searching to find a new treatment path, reviewing what helped and hindered in the past. It would probably have been wiser to use my better energy and brain power when I had more of it, but I wanted to live as far away from the box of “chronically ill” as possible. There has always been compromise and adjustments to accommodate my needs, but it was possible to do so without being noticed. I was able to masquerade as a well person.

The mask is off again.

It’s time again for me to live proudly as a person with a chronic illness.

Posted in Fibromyalgia, Flowing, Healing, MECFS, Underground.