Some of the BEST, and WORST, advice I’ve received since becoming chronically ill.

This is a quick list, the actual list would surely bore you into clicking away. 😉 Let’s get the ‘bad news’ out of the way first.

Worst advice

Keep exercising.

  • Terrible advice for an MECFS patient. It likely led to the worsening of my condition. MECFS patients are repeatedly told by doctors, who aren’t knowledgeable with regard to the science behind the illness, that they should be exercising. This is some of the worst possible advice. The more we exercise or push ourselves, not just physically but mentally too, the more the illness progresses.

My trapped trauma was the reason I am not able to heal myself.

  • In other words, it was my fault that I couldn’t free the trauma and magically cure myself. This is something I’ve seen quite a few people in the chronic illness community talk about. They too were told they needed to just work on themselves. Well I’ve got news for the people who keep sharing that philosophy. People (most anyway) have trauma, they are not all sick from it. 🙄 My nueroimmune disease doesn’t care about trauma. Children get this illness, children whose only trauma is the fact that they have this illness. Health practitioners really need to think this thought process through. It can be very toxic. It led me to feeling like a huge failure, at a time when I needed to be healing, not hating myself for not being able to heal myself.

And now for the ‘good news’.

Best Advice

Stay in today.

  • My MECFS diagnosing doctor shared that little gem with me. At the time it made no sense why a doctor was sharing zen-like advice, but as the days turned into weeks, and the weeks turned into months (and I wasn’t getting any better) it started to sink in. The advice has been invaluable to this day for reasons I don’t entirely claim to understand. Something to do with happiness and being present … blah blah blah 😉😊What I so know for certain is that not worrying about what was or what will be has led me to a more peaceful place. Don’t get me wrong, I still worry about what was and will be, but I’ve also given myself permission to let that stuff go and be present (without guilt).

Learn how to be more self-compassionate and then do that, do it now!

  • Self-compassion has been one of the biggest takeaways from being ill. It’s probably something that’s taught by one’s parents (certainly not mine, but maybe all you healthy folks out there can relate to that 😉). I have no idea if it’s something people are born with or it’s something they learned along the way, but what I do know now is how vital it is to take care of, not just your physical self, but your emotional self too. At the end of the day when all the things and people in your life fall away, your body and your health are all you have.

Thanks for stopping in today. I’d love to hear any advice, good, bad, or ugly, that you’ve received. And my apologies if this post looks odd. I’ve not been able to wrap my mind around this new formatting stuff. Hopefully you won’t be able to tell! 🙂

A few more doodles, including one with my new paints! They are so bright and beautiful!! I love them. 🙂

16 thoughts on “Some of the BEST, and WORST, advice I’ve received since becoming chronically ill.

  1. Oh my I have a different illness that no one seems to know anything about plus some others parts that they don’t even know what’s wrong. I can’t count how many times I’ve been told the same bad advice and I agree about the idea of the good advice however I find it easier said than done.

    Thank you for sharing

    Liked by 2 people

  2. I love the two pieces of “best advice” you shared Mishka! I think when we live with something chronic – something we’re probably going to have to live with for the rest of our lives – those two things are absolutely vital. As always, I love your artwork. Are your new paints gouache paints? I’m still pretty terrible with my watercolors, but it’s mainly because I don’t practice enough. I always plan to paint, but then something else comes up and the next thing I know, it’s been weeks since I’ve painted anything. I hope you’re staying as well as possible sweet friend.

    Liked by 1 person

    1. Thank you, Terri, for stopping in for a read, and your lovely comment. 🌸 The new paints are neon watercolors. They are brimming with pigment which I’m not used to so it’s a whole different painting experience. A fun one though. I have a few years practice now and when I look back at older stuff some of it actually looks better to me than what I’m creating now. I think I had more energy then. It’s easy to put aside. I try to tell myself it’s healing and soothing for my brain so it’s necessary. Hoping today is a peaceful one for you. I’m so terribly behind in keeping up with other people’s blog posts, the energy just hasn’t been there, but I hope to get caught up soon. In the meantime please now my well wishes continue to head your way.

      Liked by 1 person

  3. Mer O'Leary

    I’m so happy that you love your new paints! ❤
    I overdid it and had a fibro flare yesterday…slept most of my day away. I kept nodding off when my boyfriend came over to see me and bring me food.

    Liked by 1 person

  4. Ooo I love the new doodles! As for that ‘advice’, wow… Suggestions that an illness like ME/CFS is something you’ve caused or has been the result of ‘trapped’ trauma is pretty damn insulting. As is being told to exercise! There’s so much ignorance around chronic illness, and it can be very dangerous. I like the good advice though, particularly with self-compassion  ♥
    xx

    Liked by 2 people

    1. Thank you 🌸😊 And yeah it’s amazing the things people have been advised to do, and not do. Its interesting because on TV you don’t see patients being treated that way, but in real life, woah…whole different story. Sometimes I think medical appointments should be recorded to hold health care professionals accountable. Thank you for taking the time to stop in and leave a kind comment. 💕 Hoping you’re best as can be and today has been a peaceful one for you 🤍

      Liked by 2 people

  5. These are great! I love “stay in today”. My blog tagline is “living life one pill box compartment at a time”, which I originally meant as a joke, but it’s true. I never know what next year, or next week, or tomorrow, or even a few hours from now will bring. Just because I feel good now, or feel awful now, does not mean I will feel that way later. I don’t want to waste energy on tomorrow when I have no idea what it will bring. I need that energy for today!

    Liked by 1 person

    1. Chronic illness sure has a way of bringing home the lesson of staying in the moment and enjoying it as much as possible, doesn’t it? The not knowing if your body will be able to function properly is a heavy load to carry. Seize the day takes on a whole new meaning. Hoping you and 🐶 have a nice long weekend! Thank you for stopping by for a read. 😊

      Like

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