ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness – Final Week

Welcome! Did you know that May 12th was MECFS International Awareness Day? With that in mind, during the month of May, I was joining in on Instagram with other chronically ill people on the below pictured spoonie challenge, posting once daily as able, to spread awareness on a variety of MECFS topics. In order to try to pace my energy as best as possible throughout the month, while sharing awareness far and wide, I brought that content over here to WordPress. This final post includes the 26th through the 31st below.

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Day 26

Today’s prompts: Happiness is…

Happiness is precious.

Anxiety and mood disorders, especially major depressive disorder, are highly prevalent in patients with chronic fatigue syndrome / Myalgic Encephalomyelitis (ME/CFS). I read that, as I understand it, there’s a theory that the virus that causes the illness erodes the myelin sheath (Myelin is an insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord), allowing it to better attack the nervous system and brain.

So, I don’t want to generalize and say happiness is a choice because for so many people with illness it’s just not. But for me, for me it is a choice. I work on it though, nearly everyday. I watch silly videos, paint silly doodles (today’s photo), or whatever to make myself laugh. I’m generally a pretty happy person; I don’t take that for granted, at all.

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Day 27

Today’s prompt: People who help me

Photo: 1. My son, my partner, and me at a Millions Missing event last year. 2. My son recently. 3. My partner and me – 2005 in MX.

These two guys, gosh how do I even put it into words. They are my everything. My partner and my son have solely cared for me for six years now, without help from family on either side. There just aren’t words to express my appreciation. It’s been incredibly overwhelming for both of them, and I know either one of the would have gladly accepted help but it just hasn’t been there, which is fairly common with chronic illness as people start to fade away. Either one of them could have thrown in the towel and walked away at any time (and I know they have both contemplated it), but they’re still standing by my side. They aren’t just standing by my side though, it’s so much more, it’s all the grocery shopping, it’s going to all doctors appointments, it’s watching someone you love smile through pain, through tears, through grief, and just being there with a shoulder. They have both given up so many things they never should have had to. This illness has torn us all up emotionally but here we are standing tall, standing strong, through the thick of it. As my son says, “Tough times don’t last, but tough people do.”

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Days 28 – 31

Daily Prompts: MECFS is like, I’m inspired by, daily struggles, and please don’t forget about me

Never mind the missing ‘you’ – brain fog for the win.

Whelp, I’m going to wrap up this month’s awareness posts today. My symptoms are sounding the warning bells, so I’m going to wrap up in hopes of catching things before they get too bad.

MECFS is like – a mystery virus invades your body, determines all the things you love, and then tries to steal them all by causing your body to malfunction in ways you never knew were possible.

I’m inspired by – so many people here! From chronically ill people, to artists, to chronically ill artists. You all make me want to keep striving to do my best. So thank you for that 💕

Daily struggles – Every single day I struggle to find the energy to do the smallest of tasks, like make tea, or sometimes even get to the bathroom. And every single day I struggle to pace myself so I don’t bring on post exertional malaise, but some days that’s unavoidable. These posts have pushed me way out of my energy allotment, and now I’m paying for it. Vertigo is like … you better rest, or else… 😳

Please don’t forget about me – I’m hoping this month I’ve shared with you a little about the reality of living with this illness. I’m hoping that you see that the name Chronic Fatigue Syndrome is not remotely appropriate for this illness. It’s one of the symptoms. The good news is – researchers seem to be on promising paths (nueroinflammation) and I remain eternally hopeful that our cure is near. 💙💙💙

One more last thing – THANK YOU! No seriously, this has been some heavy, uncomfortable oversharing and you’ll never know how much I appreciate the time you’ve taken to interact with these posts.

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Below are a few more of my doodles as I follow along with World Watercolor Group’s daily prompts over on Instagram. A few are reposts as writing the awareness posts absolutely wiped me out. Wishing you a peaceful day. Stay safe 😷🌸