Yesterday, May 12, was the 22nd annual day to raise awareness of ME/CFS & FM.
The purpose of this day is to raise international awareness of these crippling diseases. You can find out more about this day on Facebook.
Everyone that could was to light up their home, business, building (themselves?) in these colors.
There are specific colors that are used, purple for FM, blue for ME/CFS and green for multiple chemical sensitivities.
Of course, there was no news coverage here or in Canada that I or my Canadian friends saw, except for a radio station in Salmon Arm, British Columbia.
My good friend, Jerre Pacquette, has a weekly radio show every Monday called What So What. It is broadcast on the radio station, Voice of the Shuswap. It is repeated every Thursday. It is an information show about health and eating well.
Yesterday, Jerre, had his show focus on this vitally important issue. His guest was one of my other very good friends, his wife, Carole Jeffries. Carole suffers from ME/CFS and FM. She has been so very sick, but is now some improved.
It was very brave of Carole to go on the radio and share her story. It is hard for all of us with these diseases to look back at the hell we went through before being diagnosed. Then the nightmares of trying to find adequate medical help. You all know what I’m talking about. No one believes you’re sick. Doctors are ignorant. Friends and family don’t understand. You don’t look sick, even though you feel like you’re dying.
So, although I didn’t blog about this yesterday, you, lucky readers, get another chance to listen to Carole’s story. The show will be repeated on Thursday at 4:00 PM, Pacific time.
You can link to it here.
Give it a listen. It also includes an excerpt from a mother testifying as to her two 20-something-year old sons’ trials with CFS. It is a powerful show and not to be missed.
The art is a little collage that I put together.
What a beautiful piece of art. I think it needs to become part of the May 12th awareness effort every year. Not sure how to accomplish that, but it is just gorgeous for all and absolutely uplifting to those with ME/CFS and FM.
Thanks for doing it. I’m so glad to have finally figured out why I wasn’t get notifications of your posts. I thought you were perhaps just busy painting and dealing with the surgery thing. Good thing we chatted about it.
I’m so glad you like the art. I just Googled lights and found a lot of colorful ones and put this together. It was a lot of fun to do. I’m so glad you’re here on my blog.
I have Fibro, my mum has ME. I still lead a full and active life at the moment. I feel blessed.
You are blessed to still have an active life. Count your blessings every day. My life is much better since I got treatment for Lyme. I actually have a life. I am grateful every day.
I am very thankful for being able to still have an active life, especially as I am aware that it may not always be the case. Glad you are living. X
Thank you, Kerry, for sharing about this horrific disease. It is still unfathomable to me that I could ever have been so sick, and for so many years. Carole is indeed brave, and I hope to hear the broadcast. One day, I hope, it will be fully recognized and better researched, just as HIV/AIDS took decades due to stigma and outright cruelty to that patient population. But for now, each of us does the best we can, and there are steps for improvement although no cure. XO
Hi Leigh, I hope things will some day be better. This event got no publicity. Maybe someday. . .
I am a student journalist from the UK, currently studying at University of Technology Sydney. I also suffer from CFS.
I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.
I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.
I wondered if I would be able to speak to you for my story?
Sorry to be so slow in getting back to you. In fact, I thought I did. But the blog is showing I didn’t respond. You know brain fog, now I’m not sure. Absolutely, I would love to help you with your paper. Just contact me through the email link on the blog.
Thank you for sharing that I’m saving this so I can look at the show later xx
I think you’ll really enjoy the show.
Yep, that was me, too. We just do our best at what we can. You crack me up. We have similar senses of humor. I know mine saves me. I lost it for quite some time. But it’s back now.
It’s great to hear someone gave some coverage to the awareness day. WordPress and Facebook are the only places I saw anything on it. It’s sad that those who suffer these terrible illnesses are so ignored.
These are invisible illnesses and they just stay hidden. It’s very frustrating. Thanks for your comment.