Category Archives: perseverance

#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

Posted in #dSavannahDefects, author, chronicillness, community, disability, giving to others, health, illness, making a difference, perseverance, poetry, shining a light, writershelpingwriters | Leave a comment

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

#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

Posted in #dSavannahDefects, advocacy, chronicillness, community, disability, friends, giving to others, hard work, health, illness, inspiration, learning, making a difference, perseverance, shining a light, the dark places | Leave a comment

there’s always hope

IMG_E8352

I’m starting this post at 5am. I can’t sleep because I’m in a lot of pain. I keep getting out of bed to ice the most troublesome areas – my neck, my lower back, my shoulders, and most especially that bit of my back that is just below my left arm and where a bunch of muscles connect my arm and my shoulders and my neck. I have no idea what that bit of anatomy is called, but it hurts like a very big ~expletive~, and is causing pain across my back and up my neck, my arm to hurt all the way down, and my fingers to go numb and tingly, all at the same time. I don’t have any “extra” pain meds I … Continue reading

Posted in #dSavannahDefects, depression, giving to others, hell, illness, insomnia, making a difference, perseverance, shining a light, the dark places | 4 Comments

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