#MEAwareness: Guest Post on waking up to severe m.e.

dSavannah note: So, as I said in my January post, I plan to publish a blog post the 15th of every month this year, come hell or high water.

Well, I published a post on the 1st of this month in honor of #ME Awareness month☆; 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 actions – all in bed, on my phone.

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 attend!)

And, as suggested by Laura Elliott over on twitter, who wrote “if you’re able to I think we should share what these campaigns cost us afterwards” and use the hashtag #MEInAction, I created another #MillionsMissing photo (click if you want to make it larger):

☆And 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 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 (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!)

So anyway, here we are. A post for May 15th.

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.

waking up to severe m.e. everyday

by Elly Vizor

Waking up is the hardest part of everyday.

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.

Then comes the bit when my mind glides into autopilot, obliviously running through a list of all I must do.

The part of my brain that has accepted and come to terms with my diseased body always seems to be the last to wake.

I almost enjoy these thoughts as they speedily roll through my mind…

Must walk the dog – will go for a long one today
Prepare breakfast for my boys – fried brekkie treat
Will blitz the house from top to bottom today
Must sort the garden and sit in the sunshine
Maybe an outing, plan a holiday

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.

The next stage comes about the time I realise I’m feeling a déjà 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.

Now as I lay here my memory of last night’s dreams play before my eyes, bitter sweet:

I ran through long grassy fields, I was swimming through the lakes, rivers and oceans
Being my kids’ play mate, being a super hero
Once again I’m dancing, I’m singing and laughing
In that moment, I smile because in my dreams
No thoughts of energy supply or aids for disability, I was truly free

The tears creep in the corners and then I know I am awake, a little angry, a little sad.

So if I wake up angry, tense or sad:
Please know I don’t mean to – it’s bitter sweet.

Waking up is the hardest part of my day.

About Elly:

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’t 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.

She doesn’t have a blog of her own, so Elly asked me to link to Dr. Hng’s Blog Page on Facebook, where one of her pieces has been published: “Adventurous Soul in a Broken Body”.

(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”, into every doctor’s office in the UK. It is available on amazon as a paperback or ebook for Kindle.)

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 bit differently. But all of our experiences are valid and real.

Thank you Elly for letting me share your words.

How to Help the #MillionsMissing:

• donate to the Open Medicine Foundation, led by Ron Davis, Stanford’s professor of biochemistry and of genetics – and read the very recent article First diagnostic test for chronic fatigue syndrome identified. (You have no idea how much hope this gives me!)
• or donate to SolveMECFSInitiative, who also focuses on research and looking for a cure
• or donate to #MEActionNet, the organization spearheading the #MillionsMissing campaign
• if you haven’t yet, watch Unrest to see more of what I deal with every day of my life; it’s also available on Netflix (and I still haven’t been able to watch it since I saw it in Nov. 2017; it’s too difficult)
• watch the 17-minute TedTalk by Jen Brea: What happens when you have a disease doctors can’t diagnose

You can also share my blog posts, advocacy images (ME Awareness Pictures and #MEAction Network on twitter are a couple places to find them), and the factsheet written by #MEAction.

You can also do all the things suggested in the post How You Can Help The Millions Missing Worldwide.

Before you go, aka how you can help me personally:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in over four years, and I get no disability benefits – and my medications alone cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah
• by donating via paypal
• or sending me something from my Amazon wishlist.

THANK YOU! to the college friend who sent me an Amazon gift card, to a fellow #MEep who sent a book off my wishlist, another #MEep who sent me a little money via paypal, and a friend who sent a ko-fi tip just this morning! Your support keeps me going, even in tough times.