Category Archives: hard work

#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

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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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Important calls to ME patients

A global day of action for ME patients to share their stories. More on their site.

dSavannah note: Don’t know what’s come over me to be posting again in the same week, but… again, this is important. Please spread it far and wide! Numerous, numerous! Myalgic Encephalomyelitis (ME) patients have become far worse – some now 100% bedbound! – after being forced to do treatments based on bad science, after being told the disease was in their heads (like Jen Brea), that they made it up, that they must not want to get better, and other terrible things. Dr. Sarah Myhill, a UK physician, medical writer and researcher, is working on a complaint to the UK GMC (General Medical Council) about the amazing amount of harm one particular study, PACE, has done to ME patients across the globe. PACE has now been discredited, … Continue reading

Posted in advocacy, chronicillness, giving to others, hard work, health, illness, making a difference, perseverance, shining a light, the dark places | Leave a comment

what is unrest?

dSavannah note: I started this post eons ago, but my brain just hasn’t functioned enough to finish it. So, this one may be more disjointed than usual. And I’ve taken off the bits I can’t figure out how to write properly, and will (eventually, maybe) put them in another post. If I wait until I can express myself the way I want, this post will never get published. And this is too important to wait. A bit ago (part of my illnesses is that time runs together and I have no real concept of it anymore), I wrote about Lady Gaga’s documentary, and included her tweet that said she hoped the film it would raise awareness for fibromyalgia and other painful, invisible illnesses. As I … Continue reading

Posted in #dSavannahDefects, community, giving to others, hard work, health, illness, inspiration, joy, learning, making a difference, perseverance, shining a light, the dark places | 2 Comments

The forgotten heroes…

dadinuniform

dSavannah note: So, the last time I had a ‘spate’ of blogging was in April (APRIL!), due to my chronic illnesses and brain fog and depression, oh my. But I actually wrote {runs to check} erm, 19 (really?!? really!) drafts, so I’m gonna try to semi-polish them up (telling my perfectionism to take a hike) and go ahead and publish them. In no particular order. So here’s the first. Likely errors included. Mike Rowe (of Discovery Channel’s “Dirty Jobs” fame) has a new series on Facebook (the platform is apparently getting into developing content now; the next step for them, I guess) called “Returning the Favor“. The premise is similar to the one for “Dirty Jobs” – except instead of finding people doing the truly … Continue reading

Posted in community, depression, dreams, family, giving to others, hard work, hell, history, inspiration, learning, making a difference, opportunity, passion, perseverance, shining a light, the dark places | Leave a comment