{"id":7706,"date":"2020-05-15T17:28:51","date_gmt":"2020-05-15T21:28:51","guid":{"rendered":"https:\/\/dsavannah.com\/blog\/?p=7706"},"modified":"2021-05-07T15:15:26","modified_gmt":"2021-05-07T19:15:26","slug":"muddling-along","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/muddling-along\/","title":{"rendered":"we’re all just muddling along"},"content":{"rendered":"

It’s now May 15th, and I haven’t written or published a blog post since February<\/a>, despite my goal to write one the 15th of every month, and despite my previous success (mostly) at making that goal.<\/p>\n

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I’m trying to write this whilst in bed, and Piper is bound and determined to crush her entire weight on my right arm, making it difficult for me to move it and type. And she keeps hitting the trackpad, making my cursor dance around. On the plus side, she’s cute and is purring like a train. (Also note my super attractive compression gloves…)<\/p><\/div>\n

When March rolled around, I didn’t post for reasons both personal and pandemic. Then April 15th came and went, and I still didn’t write anything.<\/p>\n

And now it’s May, and the less I write, the less I feel I can write, and the more I want to say. But everything is jumbled in my head – a noxious mix of emotions due to everything going on and words that make no sense together.<\/p>\n

Part of my hesitation in writing is due to not feeling like I have anything productive to add to the current conversation. Who needs one more blog post about how to deal with the virus and lockdown? What could I say that hasn’t been said already?<\/p>\n

Plus, although much has changed for most everyone in the world, as a chronically ill, disabled, 95% homebound person, my life hasn’t changed a bit. The only difference is that instead of me contacting doctors to cancel because I’m too ill, they’ve contacted me to cancel because of being closed.<\/p>\n

To make everything worse for me, mentally, this week is #MillionsMissing \/ #MEAwareness week<\/a>, as spearheaded by advocacy group #MEAction<\/a>, and I haven’t done anything.<\/p>\n

In 2018, I wrote and published five posts in May and June:<\/strong><\/h3>\n
    \n
  1. It’s #MEcfs Awareness Month – and please act!<\/a><\/li>\n
  2. #MEAwareness: Let’s talk about funding<\/a><\/li>\n
  3. #MEAwareness: What an MEcfs Crash looks like<\/a><\/li>\n
  4. #MEcfs Awareness – and here’s what I’m missing<\/a><\/li>\n
  5. #MEAwareness: Guest Post on Life with ME<\/a><\/li>\n<\/ol>\n

    In 2019, I wrote and published two posts:<\/strong><\/h3>\n
      \n
    1. May is #MEcfs Awareness Month \u2022 #MillionsMissing<\/a>\u00a0– and included five “Missing” posters I’d created with my images<\/li>\n
    2. #MEcfs Awareness: Guest Post on waking up to severe m.e.<\/a><\/li>\n<\/ol>\n

      And then there’s this year.<\/strong><\/h3>\n

      I’ve done nothing. Well, next to nothing.<\/p>\n

      This is what I wrote on Facebook on Monday:<\/p>\n

      \"\"It\u2019s #MEAwareness Week.<\/p>\n

      I\u2019ve done nothing. I\u2019ve written nothing.<\/p>\n

      And it\u2019s not because I\u2019m better. Oh, no. I\u2019m lying in bed right now, sobbing from pain and exhaustion, and also guilt for having done nothing.<\/p>\n

      A load of guilt that\u2019s especially heavy because so many who\u2019ve gotten the virus will likely never recover and will end up sick and disabled like me.<\/p>\n

      Some of you may be tired of seeing my posts about my disease, Myalgic Encephalomyelitis, and how terrible it is and how much it\u2019s fucked up and stolen my life.<\/p>\n

      And if you\u2019re tired of reading about it, imagine how I feel, living like this 24\/7, with no break, no vacation, no hope, and no FDA-approved treatment, but instead a cobbled-together collection of meds and supplements and other treatments, all of which I\u2019ve had to test on myself, like a science experiment.<\/p>\n

      Some of you may have never noticed a single post and have no clue that I\u2019m not the same person you knew.<\/p>\n

      I have no idea how to close this message. My brain is simultaneously on fire and being squeezed into a tiny rock of misfiring, painful neurons.<\/p>\n

      So instead of writing a new blog post, I\u2019ll be sharing others\u2019 words this week.<\/p>\n

      Please read them.<\/p>\n

      I am one of the #MillionsMissing.<\/p>\n

      As friends kindly pointed out when they responded to that post, it’s not my fault my body has failed me. It’s not my fault I’m overwhelmed and in pain and feel silenced. The whole world is all off kilter. I’m doing the best I can.<\/p>\n

      As my headline says: we’re all just muddling along. And hopefully, we’re all doing the best we can to be kind and supportive and not give in to the depression and fear of, well, today AND the future.<\/p>\n

      I’m proud of all the people who were able to participate in #MillionsMissing, who shared their stores on twitter<\/a> and Facebook and everywhere else they could. I’m grateful for the people carrying the burden of advocacy when I couldn’t, just as I will carry for them when I have the energy and they don’t.<\/p>\n

      I’m especially grateful to my fellow MEep blogger Jo Moss<\/a>, who created a campaign – “What we wish people knew about M.E. #MEwishes<\/a>” – and collected quotes and photos from 80 people! Please go read them.<\/p>\n

      #MEAction Network published this video a few hours ago (and my Georgia chapter has four or five photos in here, and one of them includes me!), and I couldn’t have said it better myself:<\/p>\n

      \n

      We’d like to say a special thank you to our volunteers, state groups, activists, & change makers who fight for the #MillionsMissing<\/a> all year long. Your effort, passion, experience, creativity, belief & gifts help to power #MEAction<\/a> year round.
      \nLearn more:       https:\/\/t.co\/t9EMPyHguW<\/a> pic.twitter.com\/1ITQvrf2jL<\/a><\/p>\n

      \u2014 #MEAction Network (@MEActNet) May 15, 2020<\/a><\/p><\/blockquote>\n