Tuesday, September 27, 2016

Carry This Canary Home

This has been a very long day.  And I want to thank my family for always stepping up.  It is hard to be this isolated and people say what can I do??? And you tell them and often all you feel is crickets.  Or you look at friends with this illness and their friends rallying around changing profile pics - showing their shoes, reaching out saying It's Okay - We Will Carry You.  I am tired.  There are a few hours left to make a mark on getting #MillionsMissing Trending.  I'm embarrassed to do this - don't really like doing this and I said earlier I do it for those that missed their 20's that I was gifted.  I do it for those fighting so hard for change.  I do it for those that can't move, can't speak, and don't have the resources I have.  I don't even know if I do it hoping a big cure will come - maybe it will - maybe it won't but at the end of the day I can rest knowing I did my best.
This was my last post for the night on FB - the only social media I am on.

Not going to lie. I have been a bit discouraged by my efforts today for#MillionsMissing. Believe me I am TIRED of this too. But the last two days I have suffered…really really suffered bc I tried to do too much on Saturday. And I Was TERRIFIED…did I really F this up…will this be a week, a month, will this headache, nausea, body pain, body paralysis, sound intolerance, food intolerance, night sweats, end…will it ever end. So I googled twitter and googled instagram and I have been lifted up. Lifted up by others…I am not asking a lot …I GIVE everything I have to SHOW up for OTHERS. I am asking something very simple. For ONE day to change a profile picture. For ONE day to put your shoes out…it took me over an hour to get the energy to walk to my front door to do this. We have a few hours left. See who is with me. Bless you all who showed up. John McCain on Twitter. 2,401 on Instagram. Bless you all. The point is to TREND…to have people STAND WITH US…for ONE DAY.


Today is the second #MillionsMissing day of protest and awareness for CFS/ME.  My hands are trembling as I write this post.  As I said to a sufferer's mother last night -I am just too tired to be both advocate and patient.  So I am going to choose one.  Advocate for others when I can't feel I have the energy to do it for myself.  Isn't that often the case…we can push for others when we can not do for ourselves.  How can you help…you can go to www.millionsmissing.org and they will walk you through.

And you can put your shoes outside, take a photo with #MillionsMissing and post to any or all social media accounts you have.  If I have ever missed something of yours - I never wanted to.

I miss you.  I miss me.  I miss everything it meant to live in a body that was healthy - Freedom.

Disqus for Festzeit