Bittersweet Day

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. 🌼

 

 

 

25 thoughts on “Bittersweet Day

      1. We are in the month of Smarch here right now, so…lotsa lotsa rain and wind even though the temps are creeping up. Fingers crossed. My daffodils came up last week so I have hope!

        Liked by 1 person

  1. I have always disliked vaguebooking–but I didn’t know it had a ‘name’!! I am glad to have learned a new term! Yes, that was quite the emotional roller-coaster you were on, wow. We recently lost a beloved relative to cancer, so I agree with your thoughts on that horrid disease. The ups and downs in this fallen world can be exhausting. Sending you gentle hugs and love today.

    Liked by 2 people

  2. I am so sorry for you cousins husband ( I lost my dad to cancer and a few family members have and are fighting as well as some have lost their lives) also how sad for that young chronically ill girl, I remember a women in her mid 30s who I followed when we were helping dad in his cancer fight, she had the same colon cancer as him and when one day I hopped online and saw she had just died, it ripped me apart. xoxo I hope the clouds lift for you a little as the days pass

    Liked by 1 person

  3. Argh. People suck. I actually never followed her vlogs. Vlogs are kind of hard for me to follow in general, so I only really found out about her site after this tragedy. Doing a search for her posts has unfortunately brought up a whole slew of internet bullies she apparently had to fight. She was very brave, it seems, and retained a very positive outlook and raised awareness for chronic illnesses while dealing with the worst the internet (and people in general) said in hateful online bullying. I doubt I’d have had her grace given some of the targeting it looks like she faced while doing good for so many. So sorry such a kind seeming spoonie warrior is no longer with us.

    Liked by 2 people

    1. I hemmed and hawed about bringing that up. I have very strong opinions about it but it felt too heavy to add, so I’m glad you did. I agree with you 100%, some people do suck. I read comments today that made me physically ill. The fact of the matter is chronic illness does not care if you’re a ‘mean girl’ or not. So unfortunately there are many mean girls (who are also ill) amongst us chronically ill people. I won’t go deeply into how I think anger comes from fear and how I believe deep down they are routing their fears by lashing out and being downright horrible and as you say bullies. It’s so ugly. One of the things I really respected was how she just kept trudging on, sharing her experiences with the world. She helped a lot of people in immeasurable ways. The bullies will be off to find a new person of strength to try to tear down so they can feel better about themselves and more powerful. But it won’t change anything for them, it won’t make them more powerful, it won’t help their illnesses. I wish they realized that. Deep breathes. Thank you again for sharing the truth, she deserved better. Sadly those that don’t know better, don’t do better. But my hope is that someday they will stop with the wretched internet trolling of disabled people. Sorry for the vent… Hoping the rest of the week is kind to you 🌻

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  4. Oh Mishka, it does sound like an emotional rollercoaster. I’m so sorry to hear about your cousin’s husband’s diagnosis. Cancer is such an ugly disease and affects so many individuals and families these days. I’m also very sorry to hear about the young woman Jaquie who passed away. I wasn’t familiar with her, but it’s awful to hear that while she was battling with her illness she was also battling bullying. Although social media can be a lifeline for those of us who spend a lot of time isolated, it can in itself be isolating. Praying she’s at peace now.

    On a brighter note, that’s wonderful news about the ME/CFS blood test! Hopefully it will become widely available soon.

    As always, I loved seeing your artwork. You’re so talented! Please take care of yourself and get some rest sweet friend. Hugs!

    Liked by 2 people

    1. Thank you, Teri🌸 Cancer really is awful. My cousin has started a closed group on FB to keep everyone updated on her hubby and it’s been a wonderful way to share prayers and support. And yes cyber bullying is so disheartening as it’s often targeting people who just don’t need the extra negativity on their plate.

      Hoping today is kind to you and that Spring is bringing you lots of new blooms.🌸

      Liked by 1 person

      1. That’s such a great way to keep everyone informed, especially since you don’t have to try to work through everything on the phone. You can deal with the emotions and support one another. Praying for all of you. Sending love and hugs dear friend.

        Liked by 1 person

  5. That’s a lot to deal with. I understand how draining emotions can be on the body, totally physically taxing. I’m sorry to hear about your cousin’s husband and your friend. It is devastating to lose someone to chronic illness even if you didn’t know them personally.

    Liked by 1 person

  6. You need one of those chaise lounge chairs for passing out from fatigue on, that would make it more glamorous 😉

    I’m so sorry about your cousin’s husband. Cancer is such an evil disease, it never cares about the lives it rips apart. Treatment has come on leaps and bounds compared to what it used to be, but like you I just hope one day there will be a cure for all cancers.

    That’s heartbreaking about the young woman who died from illness complications. It sounds like she made an incredible impact on others. 🌷

    I read about the blood test, too. About measuring the response to cells when stressed. It’s an interesting one, but I always take these things with a pinch of salt until more research is done. That said, it could be very, very exciting. Fingers crossed!

    I hope you can take the weekend to rest and nurture your soul a bit. Sending hugs xxxx

    Liked by 1 person

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