Category Archives: disability

i’m tired

Textling and artwork about Myalgic Encephalomyelitis by patient Marion Michell. Used with permission.    M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions, and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world.    Hardest though: your intelligence curls up in a ball and rolls out of reach, and you lie in wait for those rare instants when you can seize it by the scruff of its scrawny neck and pull it from under bed, for a wee while.

dSavannah note: This post probably isn’t complete. It likely doesn’t make sense. That’s Myalgic Encephalomyelitis (MEcfs) for you. As my friend, who has had ME since he was 3 years old in 1984☆, said: “please help all of us find a biomarker and better treatments. I don’t want to be going up and down on psychotropics for the next 30 years. It’s a shit life.” I agree. And as my title says, I’m tired, y’all. ☆He told me he didn’t want me to identify him because he doesn’t want to deal with the judgmental jerks on the internet, who will think he’s just made it all up.   Today is Tuesday, Feb 19, and it’s 11:53pm, which means it’s four days after publishing my last … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, depression, disability, hard work, health, hell, illness, insomnia, making a difference, perseverance, shining a light, the dark places | 4 Comments

Looking back, looking ahead…

My first entry into the Gratitude Journal, 6/11/2014.

So, y’all, it’s 2019. Not sure how… after all, I still remember when a credit card expiration of the year 2000 was wild. And no one would quite believe me when I used it to pay for something over the phone. Looking back… In 2018, I published 12 blog posts. They were spread out over the year on random dates, except for the four I published for #MEAwareness week (May 6-12). And two of them weren’t even mine, really, they were guest posts. In 2018, I also participated in the greatest fight of my life. In February, almost three years after first filing for disability insurance, I had a hearing in front of a judge. I haven’t written about applying and the hearing before this, … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, dreams, hard work, health, illness, inspiration, learning, making a difference, perseverance, shining a light, the dark places | 12 Comments

#MEAwareness: Guest Poetry Post by Bill Clayton

my disabled parking placard

dSavannah note: I’m in quite a few Myalgic Encephalomyelitis (MEcfs) support groups online, and I ran across this poem by a fellow #pwME (patient with ME), Bill Clayton. I asked if I could post it on my blog, and he said yes. It’s long, but it’s a worthy read about how having a “Blue Badge” helps make our lives easier. (U.K.; in the U.S., it’s officially called a “Disabled Person’s Parking Permit [placard]“) We often hear stories of people being yelled at and humiliated for having and using a Blue Badge. I myself was terrified of that very thing happening, but so far, no one has said anything. Thankfully. Hubs said that if I did get confronted, to offer to give the person any one … Continue reading

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Hello? Is this thing on?

Hope Plant 03292018

So, it’s been a minute (or more like 311,040 at the time of this writing, but who’s counting?) since I last published a blog post. In my previous life (before becoming a Sick Person), I could multi-task like nobody’s business. Not anymore. If I write this blog post, it means I cannot do anything else, even if I need to do it. And then, there’s the issue of… getting stuck. The longer I don’t write anything, the harder it gets to write something. Even with words rattling around my head. Even with 29 posts in my drafts folder, and who knows how many ideas in my email. Plus, the feeling that what I write should mean something. The pressure on myself for it to be … Continue reading

Posted in #dSavannahDefects, chronicillness, disability, hard work, health, illness, insomnia, making a difference, perseverance | 6 Comments

#MEAwareness: Guest Post on Life with ME

MEAction

dSavannah note: You may have noticed I haven’t published anything since May 12, #MEAwareness / #MillionsMissing Day. All of that advocacy wore me slap out (and I don’t think I’ve recovered yet). A friend in one of my MEcfs support groups, Jonathan, took almost two months to write this to share with his family and friends to educate them on his reality. I asked if I could publish it on my blog, and he said yes. What you are reading is exactly as he wrote it (so any typos are his, not mine for once. ha!). Dear friends and family, This is a message from Jonathan. The impetus for this message is that May was ME/CFS awareness month, but I also wanted to update you on what … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, friends, giving to others, hard work, health, illness, learning, making a difference, the dark places | 2 Comments

#MEcfs Awareness – and here’s what I’m missing

I

So, I’ve written about my chronic illnesses a lot. I even spent the entire last #AtoZChallenge (2016) writing about it, under the theme “dSavannah Defects” (aka things that are wrong with me), a category I’ve continued to use because, well, I like the name. And I’ve spent the past week frantically tweeting and posting a BUNCH of articles & whatnot this week for #MEAwareness Month, and for the #MillionsMissing events that will be held today, this Saturday, May 12. (And a HUGE THANK YOU to everyone who has commented, liked, shared, messaged me, donated, and in some way encouraged me in this effort.) But… I may not have spelled out for you exactly, in all its vulnerable detail, how it effects me (or is “affects”? … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, depression, disability, giving to others, hard work, illness, insomnia, learning, making a difference, perseverance, shining a light, the dark places | 4 Comments

#MEAwareness: What an MEcfs Crash looks like

millionsmissing

On November 30, 2017, my husband took me to a Continuing Education event, hosted by the CDC and #MEAction, to view the documentary Unrest, an unflinching, real, true, up-close-and-personal look at chronic illness, specifically myalgic encephalomyelitis, commonly (and erroneously) (and horribly) known as chronic fatigue syndrome (MEcfs). A disease I suffer daily. The filmmaker, Jennifer Brea, was in attendance (who I was too exhausted to meet), as were members of the Georgia Chapter of MEAction (on Facebook, so you’ll need an account), along with Dr. Elizabeth Unger and Dr. Nancy Klimas (sorry I’m too tired to get links, but they are Very Important People and Advocates for MEcfs). Although I wrote copious notes from the event to write a blog post, I have been unable … Continue reading

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