That’s what happened. After my last post when I gave my first video update my world blew up. Just a couple of weeks after making the video and confidently stating that I could still walk without mobility aids, I once again began to need a wheelchair to walk more than a few feet. A month after that our home was made suddenly uninhabitable when a contractor hired by the landlord sprayed an unlicensed unregistered pesticide in our apartment, causing me to go into a severe MCAS crisis. 5 days before Christmas with a massive winter storm barreling down on the region and our family was homeless. My health, which was already in rapid decline, spiraled downhill even faster. By the time we had found a safe home after sleeping on a leaky air mattress in my granddaughter’s room at my daughter’s place for a month, I was once again primarily bed bound, unable to attend to my most basic of needs. Like I said… my world well and truly blew up.
Read more →My Story – Video Blog
Trying something new here. I made this first attempt at video blogging yesterday.
For those of you who don’t know me or aren’t familiar with my story, in this I give an introduction to my experience with MECFS.It’s a bit long despite my efforts to be brief (30 years is a long time to cover!) but hopefully interesting enough to stick with it all the way. Thanks for watching! Read more →
Talking To Myself
Below is an excerpt from a blog entry that I wrote in Spring of 2009 when I was living in the UK and was more severely disabled by ME. I was confined to bed most days and when I did go out I needed to use a wheelchair. My wheelchair allowed me to go places and do things that I previously had not been able to do. One of these things was to be able to travel again. This was written after a couple weeks holiday in France with my family. The photo is from that trip. (I apologize for the numerous typos, poor grammar and lack of editing. I share this as it was written back then in all its messy glory.) Read more →
Time To Be Seen Again
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.
Pressing On
I am a farmer.
I am a grandmother crone.
I have Myalgic Encephalomyelitis. I also have Fibromyalgia.
I have been bedridden, wheelchair bound.
I have healed to walk an ancient pilgrimage.
I farm. Long hard days of physically and mentally demanding work growing food. I take great pride in how much I have done. How much I do.
