Whew, yesterday was an emotional roller-coaster. The causes of the roller-coaster were not mine, they came from my lifeline, social media. As is typical with MECFS, emotional experiences tire me just as much as physical ones, today I’m gum on the bottom of a shoe and tomorrow will likely find me even gummier. So, to adult my way through self-care I’ll keep it short and sweet today, but since ‘vaguebooking’ is one of my pet peeves I will go ahead and share with you what happened yesterday and then be off to continue my life of rest or unrest. Fun fact: I usually involuntarily pass out from fatigue after these posts. I know, glamorous huh? 😉
Oh, and in case you’re wondering what in the world vaguebooking is:
“Vaguebooking is any update on a social network (although primarily Facebook) that is intentionally vague. Status updates which fall under the category of vaguebooking can be long or short, but most comprise just a few simple words. Regardless of the length they all have one thing in common – to elicit a response from friends and followers.”
It all started in the wee hours of the morning when I was dealing with insomnia by flipping through Facebook and noticed a post from my cousin who is several time zones ahead of me. She shared that her husband, who had been feeling unwell, has ‘widespread cancer’. He’s starts chemo today. We’ve lost some of our most beloved family members to cancer, as so many of you have too I’m sure, but each time it just freshly breaks my heart. Of course, I’m hoping for the best for him, and for her, but cancer, gosh I hate cancer. Hopefully someday this world will have a cure for the nearly 200 types that continue to cause heartbreak throughout the globe.
As the day wore on, with my cousin on my heart, I came across another post from Millions Missing Voice (this is one of my favorite FB pages for MECFS) sharing the news from the Stanford Medicine News Center that my favorite (sorry other scientists but he is!) researcher, Ron Davis, PhD, professor of biochemistry and of genetics, has created a blood test that can flag MECFS, and so far with 100% accuracy. I almost fell out of my bed, not really but I was in shock! I read it again thinking is this true, is this really happening!? And then proceeded to google to see if maybe this was an article from The Onion, and nope it was the real deal! Oh, what a high! Seriously excited!! If you want to read the article, here you have it. Wow, I just knew we were getting closer and then BAM here we go. Next month holds May 12th, MECFS awareness day. You may even read about the illness in the news here and there as people spread awareness not just on May 12th, but also that week, and throughout the month. Since we’re on the topic, if you’re curious, there seem to be quite a few MECFS corporate crusaders but my top three favorites are Open Medicine Foundation, Bateman Horne Center, and #MEAction. Next month I’ll likely do a post about what they do, and what they hope to achieve.
At this point in the day I realized I needed to just space out for a while. Okay maybe that’s the wrong way to put it, but when you have MECFS you have to pace, not just physically but mentally and emotionally too. I was aware that the emotional morning would drain me, so I was just about ready to set my phone down and have some quiet time when I saw a Twitter post that said RIP #ChronicallyJaquie. My first thought, oh no, no, no. I did a little more research and in fact, yes, the chronic illness community lost a very sweet soul yesterday at the age of 23 due to complications with her illness. While I have had zero interaction with her I had been following along with her Youtube channel for a good while now. She shared the good and the bad, the trials of being chronically ill and medically challenging. She fought for what was best for her and shared what she knew. From posts I’ve read over the past 24 hours, she helped so many people, especially those who shared her conditions. She made this world a better place by lifting people up who felt defeated, by sharing her knowledge to help others get treatment and diagnoses, as well as help people who were embarking on the service dog journey. Chronic illness can be a scary world. If you aren’t surrounded by supportive people, and sometimes even if you are, you often feel like you’re in a dark room and can’t find the light switch. It’s people like her who help shine the light on that switch and I for one am very thankful for those who speak up and speak out. I’ll miss her sharing her journey and seeing Harlow’s sweet puppy face.
That was yesterday, in a nutshell; I’m fairly sure you have other things to do with your life than read my novella of a diary entry, so I’ll let you go. Sincerely hoping today finds you doing as well as possible and if not, hopefully tomorrow will be better than today. A few more of my doodles below. 🌼