{"id":6648,"date":"2019-05-15T13:30:11","date_gmt":"2019-05-15T17:30:11","guid":{"rendered":"https:\/\/dsavannah.com\/blog\/?p=6648"},"modified":"2021-05-05T23:19:00","modified_gmt":"2021-05-06T03:19:00","slug":"mecfs-awareness-guest-waking","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/mecfs-awareness-guest-waking\/","title":{"rendered":"#MEAwareness: Guest Post on waking up to severe m.e."},"content":{"rendered":"

\"#MEAction<\/p>\n

dSavannah note<\/b><\/span>: So, as I said in my January post<\/a>, I plan to publish a blog post the 15th of every month this year, come hell or high water.<\/p>\n

Well, I published a post on the 1st of this month in honor of #ME Awareness month<\/a>\u2606; and I shared all the photos from that post on my social media, and got lots of comments and questions; and I did what little online advocacy I could for this year’s #MillionsMissing<\/a> actions – all in bed, on my phone.<\/p>\n

And quite frankly, I’m exhausted. I’m tired. I’m in tears. I hurt. I can’t think. I can’t speak louder than a whisper. (Which makes it super difficult to communicate with my husband. We both end up frustrated.) And I wasn’t even able to make it in person to my city’s #MillionsMissing rally like I planned, which has depressed me no end. (Though thank you to my friend from 10th grade who did<\/em> attend!)<\/p>\n

\"Image<\/a>And, as suggested by Laura Elliott<\/a> over on twitter, who wrote “if you\u2019re able to I think we should share what these campaigns cost us afterwards” and use the hashtag #<\/s>MEInAction<\/a>, I created another #MillionsMissing photo (click if you want to make it larger):<\/p>\n

\u2606And by the way, you probably didn’t get my May 1st post via email, and the WordPress app couldn’t see any of my posts because my site needed some maintenance, which of course<\/em> I hadn’t had the energy to do. But I’ve now done what needed doin’, and hopefully you’ll read what I wrote on the 1st<\/a> (and this post will publish properly and show up in the WordPress reader.) (And yes, I do realize now that my “note” here is basically as long as a “normal” blog post. You were warned in my blog title that I tend to ramble!)<\/p>\n

So anyway, here we are. A post for May 15th.<\/p>\n

I feel I’m “cheating” a little, as I saw this on one of my ME support groups (I’ve already forgotten which one!), and asked the author if she would mind if I published it on my blog. She said yes.<\/p>\n

\n

waking up to severe m.e. everyday<\/strong><\/h2>\n

by Elly Vizor<\/strong><\/h3>\n

Waking up is the hardest part of everyday.<\/p>\n

First comes the limbo stage; open my eyes is all I can do. I can hear everything going on around me. It’s like I’ve been set in concrete, I can’t move any part of my body or even talk.<\/p>\n

Then comes the bit when my mind glides into autopilot, obliviously running through a list of all I must do.<\/p>\n

The part of my brain that has accepted and come to terms with my diseased body always seems to be the last to wake.<\/p>\n

I almost enjoy these thoughts as they speedily roll through my mind\u2026<\/p>\n

Must walk the dog – will go for a long one today
\nPrepare breakfast for my boys – fried brekkie treat
\nWill blitz the house from top to bottom today
\nMust sort the garden and sit in the sunshine
\nMaybe an outing, plan a holiday<\/p>\n

I enjoy this thought process though it’s torture as I don’t debate the distance, effort or the long term effects; just at that moment, somewhere in my brain I’m still normal.<\/p>\n

The next stage comes about the time I realise I’m feeling a d\u00e9j\u00e0 vu effect, which quickly feels like groundhog day has become my reality. That’s when something inside me snaps, as the anger resides, my body starts to twitch, spasm and come to life with full-body pins and needles.<\/p>\n

Now as I lay here my memory of last night\u2019s dreams play before my eyes, bitter sweet:<\/p>\n

I ran through long grassy fields, I was swimming through the lakes, rivers and oceans
\nBeing my kids\u2019 play mate, being a super hero
\nOnce again I’m dancing, I’m singing and laughing
\nIn that moment, I smile because in my dreams
\nNo thoughts of energy supply or aids for disability, I was truly free<\/p>\n

The tears creep in the corners and then I know I am awake, a little angry, a little sad.<\/p>\n

So if I wake up angry, tense or sad:
\nPlease know I don’t mean to – it’s bitter sweet.<\/p>\n

Waking up is the hardest part of my day.<\/p>\n

About Elly:<\/strong><\/h2>\n

\"Close<\/p>\n

Elly Vizor is 39 and lives in Gloucester, U.K. She got glandular fever when she was 13 years old, and had mild-moderate ME after that. She didn\u2019t know how ill she was until she pushed herself too far, and was diagnosed with severe ME five-and-a-half years ago. Elly says she hasn’t had a minute day or night without excruciating pain in over five years since things became severe. <\/span><\/p>\n

She doesn\u2019t have a blog of her own, so Elly asked me to link to Dr. Hng\u2019s Blog Page<\/a> on Facebook, where one of her pieces has been published: \u201cAdventurous Soul in a Broken Body<\/a>\u201d.<\/p>\n

(Dr. Hng is a British doctor who was struck down with ME\/CFS. She is trying to get the book she wrote about her experiences, Doctor with M.E.: My journey with “Chronic Fatigue Syndrome\u201d<\/em>, into every doctor\u2019s office in the UK. It is available on amazon as a paperback<\/a> or ebook for Kindle<\/a>.)<\/p>\n

Note that Elly’s experience with waking up is different than mine. I tend to wake up crying because the pain comes rushing back, with not even a second to daydream, or to forget the disease ruining my life and my body. All of us #MEeps (#pwME) experience this disease<\/a> a bit differently. But all of our experiences are valid and real.<\/p>\n

Thank you Elly for letting me share your words.<\/p>\n

\n

How to Help the #MillionsMissing:<\/strong><\/h2>\n