ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness Week 3

Welcome! Did you know that May 12th was MECFS International Awareness Day? With that in mind, during the month of May, I’m joining in on Instagram with other chronically ill people on the below pictured spoonie challenges, 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 this month, while sharing awareness far and wide, I’ll be bringing that content over here to WordPress each Tuesday this month. This post includes the 13th through the 19th below.


Day 13

Today’s prompts: I’m inspired by & the most difficult thing

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This is Whitney Dafoe 💙 He is the son of Superman, or at least that’s what he calls his dad, Dr. Ron Davis. His father is one of the leading researchers for MECFS. Top picture was before illness, while the bottom is his mom & dad (his caretakers as he lives with severe MECFS), and him more recently.

Flaring so keeping it short… that whole self compassion thing is a work in progress for me.

I’m inspired by Dr. Ron Davis (pictured), Professor of Biochemistry & Genetics and the Director of the Stanford Genome Technology Center at #StanfordUniversity, his team, and his family, as well as the teams of researchers working on MECFS around the globe.
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The most difficult things for me are grieving the loss of my quality of life, while still living it, and dealing with those health care professionals who demean me because of their lack of education and unwillingness to learn from their patients.


Day 14

Today’s prompts: Your favorite place & create something

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One of my favorite places in the world is ‘The Garden’. It’s about 15 minutes from my home and it’s open to anyone, seriously if you’re ever in San Diego, it’s worth a visit. It’s free, and the views are amazing… if you like peacefully looking out over the ocean while surrounded by plants and flowers. 😊 The stairs keep me from visiting as I’d like, but I’ll get back there!


Day 15

Today’s prompts: Self Care & Hope

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Self care has never come naturally to me. I’m not talking about personal hygiene, I’m talking about taking time out for yourself to relax, refresh, and recharge. I’m more of a charge it until you drop kind of person, or I was. So that’s exactly what I did. I charged it as hard as I could, with every minute of the day, until I dropped…fell ill.

If you’re healthy and you’re reading this, please remember to take some time to allow your body to heal and rest. Oh and I see you at the back of the room thinking you’ll do all that while you’re sleeping…I’m here to tell you it doesn’t always work that way. Do the thing, the thing you say you never have time for or that you feel selfish for doing. Do the thing that is just for you. Even if it’s as simple as letting your favorite song finish while you pull into the driveway, just do it (sorry, not sorry nike).

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As far as Hope – the word takes on a whole new meaning when it’s attached to illness. If you’ve been there, or have a loved one who has, you know.

My hope? My hope is that larger governmental grant requests for MECFS will come through and people will continue to donate to places like Open Medicine Foundation so that researchers can continue to research and find the cause, so that tests can be created, so that treatments can be identified, so that a cure can be found, so that MECFS can be cured, millions and millions of times over.

The CDC estimates that 17-24 million people worldwide have MECFS.


Day 16

Today’s prompts: The hardest part & numbers

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Photo explanation: Three days of Fitbit heart rate readings, which make it look like different activities were done each day. The reality is each of those days were spent in bed 23 hours of the day. The day showing I spent 11 hours in exercise zone was actually a day my bedroom was over 80 degrees. This caused awful PEM.

The hardest part…is difficult to choose. • There’s the never knowing which day will bring which symptoms so it’s impossible to know what your body’s abilities will be from one hour to the next, and consequently what you will or won’t be able to do. • There’s dealing with health care professionals, friends, and family who think you’re just tired, depressed, malingering, or lazy. • There’s the vertigo, gosh I hate the vertigo. All you can do is curl up in one position, not move your head, and wait for the spinning to stop. • There’s so much more but I try to keep my thoughts positive so I’m going to leave it at that. 💙

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Numbers…there are so many numbers. There are charts and graphs showing how common the illness is, how ridiculously low the funding is, how it affects both men, women, and children, but truthfully the first ‘numbers’ that come to mind are my Fitbit heart rate numbers.

One of the most helpful tools I learned on an MECFS group was how to pace by staying out of my anaerobic threshold. If you’re curious how it works, here’s an article discussing how MECFS affects the oxygen in the cells and why pacing is so helpful, as well as how to pace.


Day 17

Today’s prompts: Medical Advice / Support & Community

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These two prompts go together like peanut butter & jelly.

I don’t know how else to explain it except to say it’s been ironic. When the medical community, who you assume would provide advice and support doesn’t provide any, you are left with no choice but to turn to the online communities in search of any help you can find.

The facts: I’ve seen over 30 health care professionals, directly and indirectly, related to MECFS. Aside from my initial diagnosing Dr, who told me there was “nothing more [he] could do for [me]”, not one other doctor has offered knowledge, advice, or support with regard to MECFS (aside from telling me to exercise). In fact even after begging through tears for help, UCSD Rheumatology refused to see me because I have it (they are studying it by the way). Thankfully online communities offer more knowledge and support than you could imagine. Primarily because people have had no choice but to go online for support. You can find everything from discussions about symptoms and what’s worked vs what doesn’t, to the latest scientific knowledge broken down into laymen’s terms. But most importantly you will find support. And you just can’t imagine how important that becomes with this illness. It can become extremely lonely for some people and knowing there’s someone out there who will sit with you online saves lives, literally.

In the spirit of complete transparency, I have regularly seen a therapist for support throughout the illness. Before you form an opinion let me just say this, this illness is traumatic. Finding a therapist who is willing to wade through that trauma with you can be vital. It’s not about therapy healing the illness, it’s about being able to vent about the horrific doctors appointments, the changes in your home life, and the significant loss you experience.


Day 18

Today’s prompts: Others in the IG community & Pacing myself

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In an effort to properly pace my exhausted self I’m going to leave it at this today – I’m eternally thankful for the people I’ve had the pleasure of connecting with here on IG. You all make the world feel like a better place to be. 💞


Day 19

Today’s prompts: Your Hopes and dreams & Achievements

My hope? A cure, or treatment for all of us, from children to elderly, from those who have had it for days, to decades.
My dreams? I try not to spend time dreaming of what isn’t, and instead focus on the blessings of each day. In fairness I’ve just never been a day dreamer. It’s odd, I know. 😁

Achievements? My doodles. I know I’m supposed to say something about my health but an achievement implies a leveling up of sorts, and honestly, not to be all doom and gloom, but my health has slowly but steadily declined. So I’m sticking with my little doodles.

If you’re wondering how I watercolor while in bed, here’s how. Let me start by saying there’s a world of knowledge with regard to drawing and watercolors, which I wish I’d been exposed to, but the fact remains I’ve had no art education whatsoever (except a high school art class that I struggled mightily in because I’m not ‘artistic’). With all that in mind, my resources are pictured. The only things missing are a small towel (watercolor doesn’t come out of anything 😳😂 the towel is to protect my clothes), and my water cup. And of course the paints, but I keep those on a shelf and add as needed.

I have an art lamp as my bedside lamp and all photos are taken with my phone. Everything is in arms reach except the water cup.

The daily post text is saved as a note in my phone so all I have to do is update the date and the prompt. Also I hashtag my most prominent/worst symptom every single day. It’s a micro vent and I don’t think I’ve ever shared that before. People ask how I do it everyday. I don’t. There are plenty of repost days, which I normally fess up to. 😊 Also my doodles are very small, maybe a few inches.

If you’re on the fence, give it a try! The benefits are numerous; one of the best parts is that when I’m drawing/painting, my brain quiets down, the pain lulls, it’s peaceful. It’s actually really fun, often the highlight of my day. Some people exercise, some people have a glass of wine, I paint. 💙


Below are a few more of my doodles as I follow along with World Watercolor Group’s daily prompts over on Instagram. Wishing you a peaceful day, which seems hard to come by with all that is going on in the world right now. Stay safe 😷🌸

10 thoughts on “ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness Week 3

  1. Thanks for sharing your challenge participation and your experience with us Mishka. These personal experiences are so important in raising awareness and deepening understanding. I’ve tweeted and I’m sharing on Pinterest. As always I loved your artwork, especially those little peas in a pod. They’re ADORABLE! Sending hugs!

    Liked by 2 people

    1. Thank you, Terri 🌸 I’m running on E with pain off the charts but I feel like it’s so important for people to understand that people with this illness aren’t lazy. We’re actually very driven, willing to use what precious energy we have to spread awareness, and we’re dying to get back to our lives but there is still no treatment, no cure, and funding is dismal. I still feel like treatment will come though, I just hope it’s soon. 💙 Hoping you are well!💜

      Liked by 1 person

      1. I’m so sorry your pain levels are so high and energy levels so low Mishka. Isn’t it interesting that the majority of us with ME/CFS or Fibromyalgia are people who tend to be very driven. I suspect they’ll find a correlation as research continues. Here’s hoping awareness will open the door to more research, and some day, a cure. Take care of yourself sweet friend!

        Liked by 1 person

    1. You’re spot on there. Between upsetting medical appts and advocating through disability it’s definitely, without a doubt, permanently worsened my health. It should not be that way. The system should not be designed to traumatize you and kick you to curb, and yet, for me it has been. But I’m still here, lots of battle wounds that may never heal, but here. I’m also upset that I have an illness that I, and so many others with it, have to spread our own awareness to raise funds at a cost to ourselves. I’m freaking exhausted from it. What even is that??? It’s abhorrent. Because as you say energy is precious. Forget the fairytale where you meet Prince Charming, I want the one where the Dr is knowledgeable about recent research about your illness, treats you with respect, and disability (when you are clearly disabled and have doctors letters saying so) doesn’t wait until your work credits expire so you fall out of the system. Where is that dream come true? Since you say I don’t swear – If I swore I’d be swearing here 😁 Sorry. So very tired of it all. Hoping you are well as can be 💞

      Liked by 1 person

  2. Merbear74

    I just did an hour detour, reading about Whitney Defoe and more about CFS/ME.
    I do not know how I will accomplish this but I’m going to find a way to send you something that’ll cool off your room for you! You don’t deserve so much suffering! Much love!! ❤

    Liked by 1 person

    1. You have the biggest, sweetest heart ❤️ Thank you for taking time and energy to read about Whitney 💔 and the illness. I can’t imagine you finished unscathed. In its severest form it’s nothing short of horrific. He and his dad are so strong, actually the whole family. His mom and sister share their lives too, and it’s really heartbreaking to see them all suffering. I do believe his dad will find a treatment. He’s all in and he’s brilliant. I don’t want you to worry about me!! We have a portable AC in the garage but they only bring it up if it’s going to be hot for weeks at a time because it’s a pain in the tuckus and takes up lots of room, that and it’s so loud the noise alone can send me flaring. Ah to be the princess and pea. Who flares from noise?? Um yes, me. 🙄 So you stop worrying about me! It’s a beautiful day here today. Aside from the …🤭 ‘nice gentleman’ at the tennis courts screaming every time he misses the ball (seriously he must need lessons or he’s misdirecting some major quarantine rage [much more likely😂]. I suppose I should be pleased he’s taking it out on tennis balls. My frustration with him and the rest of tennis players at that court is that I have this totally irrational fear that he will spew Covid into the air and will float into my bedroom window. The odds are probably zero as my screen looks like something out of a horror movie (mucky). And now that I’ve taken you on a pointless journey of a day in the life of Mishka 😂… Sending you so much love as I know your heart is hurting right now. I also know there are no words to fix it. So just know I’m sitting with you from over here and I get it. I still painfully miss my mom after 18 years. Be gentle with yourself 💞

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  3. I loved reading this little window into your life. Thanks for sharing.

    I, too, see a therapist. There was a time that I thought seeing a therapist would mean there was something wrong with me and I didn’t go out of embarrassment or fear. But now – we all need someone to talk to, and like you said, being sick and feeling helpless and dealing with the medical system can be very traumatic. We’re all grieving our health and the lives we used to have. I find it also helps maintain my personal relationships, because they don’t need to hear me complain about having a chronic illness all the time.

    I’m so sorry to hear that you have been flaring. It seems so ironic that all of my chronic illness friends, like you, were once so active and motivated, and makes it that much more ridiculous that we are accused of being lazy and unmotivated. As if anyone would voluntarily choose to spend 23 hours a day in bed. It’s bad enough we have to fight the medical system – we shouldn’t have to fight everyone else, too. Hoping things improve for you soon.

    Also, I don’t think I have ever been to The Garden! How is that possible?? I will have to check that out soon! Learned something new!

    Liked by 1 person

    1. Oh you must go to Swami’s gardens once they’re open! It’s small, but peaceful and pretty. They have benches so you can sit overlooking the ocean. So pretty. My parents were married there in the 60s so I’m a little partial. 😊

      And you’re so right about the benefit of a therapist sparing everyone around you with all the stuff that goes along with being ill. It’s so healthy, I think, to have that sounding board without feeling guilty for feeling like you’re droning on.

      And thank you for your well wishes. The added stress of having my son working two jobs (one full, one PT) as an essential worker is wearing on me, and him. But trying to take it day by day.

      Thank you for your coworker posts! They totally crack me up 😂 Take good care 💙

      Like

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