Category Archives: hard work

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

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

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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

It’s #MEcfs Awareness Month – and please act!

millionsmissing

May is Awareness Month for a lot of illnesses, such as Amyotrophic lateral sclerosis (ALS) / Lou Gehrig’s disease, Lupus, and Mental Health. Last month was Ankylosing Spondylitis (AS) Awareness Month, which Charis Hill wrote about extensively. (And I never managed to. Sorry.) But this month is awareness for my primary illness, Myalgic Encephalomyelitis (ME), also known by the terrible moniker chronic fatigue syndrome. And May 12th specifically is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) (per the May 12th International Awareness Day website), and International ME/CFS and Fibromyalgia Awareness Day. (dSavannah note: my brain does NOT want to work today {on May 5, which is when I originally started this post}. Writing this is like trying to sludge through the grimiest, stickiest … Continue reading

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, family, giving to others, hard work, health, illness, insomnia, learning, making a difference, mental illness, perseverance, shining a light, the dark places | 6 Comments

Let’s talk about disability insurance

disabilities_look-like

This is a hard topic for me to write about, but: it’s important. And it also fits in with my mission to Shine A Light Into the Dark Places, the stigmatized places, the places no one wants to look at or talk about. And one of those places is disability, and specifically, disability insurance. I see sooo soo many people on twitter and other social media platforms crowdfunding things like – fish oil for their kid, or an audible membership, or a wheelchair, or funds toward a new apartment. Look under the hashtag #DisabilityWishlists, and get ready to cry at all the things people need. And if you have any money to spare, which trust me, unless you too are disabled, you actually do, pick … Continue reading

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