ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness Week 4

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 20th through the 25th below.


Day 20

Today’s prompts: Favorite quote & Coping

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Asking my favorite quote is like asking my favorite book, or song, or piece of art. There’s simply no way I could choose! With direct correlation to coping though, the one in the photo is one I remind myself of regularly. To me it means making the best of the situation at hand. Some people have it better, some have it worse; those people are not me. It’s up to me to make living with the illness the very best I can for myself. In doing so I also hope to be teaching my son the #lifelesson that despite what’s going on, making the best of it lightens the burden on your soul. When you have to dig down deep to get to tomorrow or you fear if you’ll get there, you simply do whatever it takes in those moments. For me it’s about making the most of each day, and letting the rest go. I’m blooming, it takes work and that in itself is good enough.

Today is the last day of @chronic_char’s challenge and I wanted to take a moment to say thank you! 💙 It’s allowed us all to share, to spread awareness, to vent, and to show compassion. That’s a very big gift to a chronically ill person.💖


Day 21

Today’s prompts: Embarrassing aspects

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I wanted to skip this one, it feels like a touchy subject, but I’m trying to be forthright with these posts, so here goes. Many things come to mind but here are two.

One, my thoughts. I now lose them mid thought. I forget a lot. Not like what was your high school phone number. That I can remember. It’s more like … in the moment. Today I walked away from the refrigerator and forgot to close the door (don’t tell my partner but I do that more than I’d like to admit). It’s most embarrassing when trying to talk to someone because I totally zone out, have no idea what they were saying or what the topic even was and then have to pretend to remember. If you’re talking to me and I’m nodding my head and saying hmmm or wow, it’s very likely that not only am I’m not catching any of it, I probably forgot what we were talking about. The nodding is my cover up. My brain used to be like a sponge, but it’s okay, it’s still really good to me. It still reminds me I like chocolate pretty regularly, I’d be okay with forgetting that! 😉😁 Secondly, it often feels yucky superficial where I live. I don’t have that beautiful grey hair that over 50 models have…mine is just grey, and white, and brown. It does it’s own thing 😁 There was a period of time where I felt unkempt for not coloring it but then one day I thought…I’m thankful I have hair. And now I just roll with it. Would I love to color it? Yes. Am I going to? Nope. I seem to have developed a sensitivity to hair dye shortly before I got sick.

There are more but I’m tired now and you have better things to do with your day than read my trials and tribulations … besides it’s chocolate time, right? 😊


Day 22

Today’s prompts: past, present, and future

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Past – I have been going round and round with social security disability since 2014. I have submitted multiple doctors letters, assessments, family/friend letters, and over 800 pages of medical documentation (according to my past attorney) and still I’ve repeatedly been denied. My last hearing was with seriously one of the most insensitive judges on the face of this earth. Even the attorney used choice words to describe him. I’m at the hearing stage again. I have the date, and it’s a different judge. I try not to think about it. It fills me with anxiety. Here’s why.

I’m an extremely independent and previously self sufficient person. To lose the ability to hold my own was devastating. Like seriously devastating. To feel like a burden is horrible. To not have a penny to your name for years on end is awful. To know that other people are having to step in and step up because you can no longer fend for yourself is also horrible. With every application I’ve given more than I had to give and with every denial my condition has worsened. It’s been truly awful, and in my opinion an inhumane process.

Present – I try, with the help of my partner, son, and therapist to repeatedly remind myself this isn’t my fault, I’m not a burden, I have a burden.

Future – We shall see. Nothing is promised is it. I’m always hopeful that justice will prevail.

I’m not trying to tug on anyone’s heart strings. What I am trying to do is share candidly with you my reality, as well as many, many others of us with this illness so that the next time you hear someone has Chronic Fatigue Syndrome you won’t think ‘oh I get tired too’.


Day 23

Today’s prompts: I’m thankful for …

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I’m thankful for every moment of everyday. ❤️ I’m also exhausted so that’s all from me today. 😊


Day 24 & 25

Prompts: Lessons I’ve learned & grief

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Grief comes in waves, we all know that. Some days are better than others. What I didn’t know, what I’ve learned,  is when you’re grieving the loss of who you were before chronic illness, it never goes away.

There are days where all the ways my life has changed doesn’t cross my mind, but then there are days where, for instance, I see people walking on the beach and my heart hurts so badly I have to hold back the tears.

I don’t know that I could ever articulate it properly, except to say, when you’re grieving the loss of who you were, the things you thought you were going to do, the career, the family, the vacations, when you have to watch it all slip away, it’s a type of heartache that is unparalleled.

One of the most difficult parts is knowing the grief will never go away because unlike losing someone else, you’re always there to remind yourself. You learn to live with it, but there will always be moments where your heart refuses to let you forget.


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

 

11 thoughts on “ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) Awareness Week 4

  1. Mark Kent

    people never see the every day effects .there views/judgements are very Snotty Nosed .i have long long list health issues m.e .BUT ALL SO Fibromyalia ..ibs .migraines .list goes on .i take part in a lot lot research
    my blog.http;//mark-kent.webs.com
    twitter,supersnopper

    Liked by 1 person

  2. Thank you so very much for your willingness to touch on the reality of living with chronic illness……..I know I have days that I just can’t get out of my own head and the feelings of frustration and disappointment are overwhelming. 🙂

    Liked by 1 person

    1. Thank you for your kindness. These posts come at a cost to me, they’re not only exhausting, but uncomfortably revealing. Also I just want to make people smile, not pull on their heart. But awareness is important too. Luckily we’re almost to the end of the month! 💖 Hoping today has been best as can be for you 💞

      Like

  3. “… despite what’s going on, making the best of it lightens the burden on your soul” – I love the way you’ve said that, I totally agree.

    I’m so sorry for everything you’ve had to go through with social security disability. So many years of frustration and struggle, that must be utterly exhausting (as if ME/CFS weren’t exhausting enough already!) My fingers are very much crossed for the next hearing with a different judge. I do hope justice will prevail and that at least a little financial security can be behind you because it’s just another hurdle you don’t need. It’s more than an inhumane process, it’s ridiculous and painful and dangerous. I don’t think you come across as tugging on heart strings at all. It’s important to know the reality of these experiences, I just wish I could do something, to offer something beyond ‘I’m sorry’ and wishing you weren’t going through it all. If ever you need some big internet petition to support your case let me know, I’ll spearhead it and help!

    You’ve done fantastically with this post as always, you should be proud for all you’re doing with not just raising awareness but in showing the brutal reality while keeping the compassion and hope alive always.

    Sending love xxxx

    Liked by 1 person

    1. Thank you, Caz 💙 I always appreciate you take the time to not only read through my rambles but so thoughtfully leave your thoughts. And I appreciate your offer to help ❤️

      I’m just so tired of it all I feel like I’m doing the bare minimum these days to conserve as much energy as possible. When you try so hard for so long and get no where eventually you just start to give up. I’m not giving up on life! Just on giving my all, begging for care and repayment from a system I paid into for decades. But everyday is a new day and an opportunity for a better day. 💕

      Hoping today was/is good to you and that you’re able to do something you enjoy doing 🤍

      Liked by 1 person

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