This is the absolute sucky part when the physical is struggling so much and the mental decides to play the game of is this a real thing. I have been working on a curating a list of things I can tell myself when I'm battling imposter syndrome while also living with my hEDS, MCAS, etc. I find it helps to have something in advance so the PEM doesn't also have to deal with me trying to add more to cognition.
- This is hard, and I am here.
- This hurts, and I deserve care.
- I can be honest about what this costs me.
- I don't have to carry this alone.
- My body deserves kindness, especially now.
- I don't have to pretend this feels okay. I can acknowledge what is true.
- This is what my body is carrying today. I am allowed to be affected by this.
- Nothing is wrong with me for finding this difficult.
Thank you for sharing this. I reached burnout a couple of years ago after pushing my way through so many degrees ,Aut/adhd ,undiagnosed eds ,mcas with now extreme brain fog in morning.
Single/sole parenthood my child now a young adult has moved out, finally 5 yrs into the career I've always wanted.... I scaled back from everything including people and social events, Thinking I just needed this mental break, But my body has decided that's not the end of decompressing.
It's like discovering and finding that sweet spot where you can finally let go of all the tension in your body, and then quickly realizing that tension is what was holding pieces together - and joints slip/pop or worse. ( Like stripping away anxiety too fast from someone with trauma past who relies on it to feel safe).
After having a few extreme muscle spasms in the middle of the night, And the opposite, my blood pressure dipping to 85/55 - It seemed sleep was the biggest issue come out laying down with hypermobility is not an option for me . What helped me personally and still helps is changing my entire life to everything standing up as much as possible. I got a million pillows and wedges for my bed and found the exact one sleeping spot that I have to stay in for the entire night supported by pillows all around me tucked under. When I get pain on that side I have to find another way. And not move from it while laying down.
I had to change all of my exercise and any physical activities to all standing up, no laying down exercising.
I'm still in this journey, Taking things slowly and movement very slowly has been most helpful... Which has been really hard because I've always been an extremely active person. My biggest dilemma right now is trying to find an actual physical therapist who specializes in hypermobility eds, and for the love of God, a stand-up/sit-up MRI machine in North Carolina. Random torn tendon, fun.
Focusing on sleep, and what I can do and can enjoy has been the most helpful thing for me, even when it means huge adjustments sometimes . Even though I have the need for good medical docs, Feels better staying away from them since I have not found receptive clinicians. I think finding better and more receptive care is the next. But yeah those days when nothing is working right, they are the absolute worst and it's hard to feel like it's not a curse. I keep imagining it is just now my body unwinding moving backwards towards healing... Just like the healing from burnout. That's what gives me hope.
I talk about this at length in my newest podcast episode
https://www.allthingspractice.com/blog/podcast-episode-249-neurodivergent-bodies-chronic-illness-and-the-struggle-to-participate-in-life
Thank you for putting this into words. I've never minded being autistic, but I bloody hate having hEDS and MCAS.
💚💚💚
This is the absolute sucky part when the physical is struggling so much and the mental decides to play the game of is this a real thing. I have been working on a curating a list of things I can tell myself when I'm battling imposter syndrome while also living with my hEDS, MCAS, etc. I find it helps to have something in advance so the PEM doesn't also have to deal with me trying to add more to cognition.
- This is hard, and I am here.
- This hurts, and I deserve care.
- I can be honest about what this costs me.
- I don't have to carry this alone.
- My body deserves kindness, especially now.
- I don't have to pretend this feels okay. I can acknowledge what is true.
- This is what my body is carrying today. I am allowed to be affected by this.
- Nothing is wrong with me for finding this difficult.
- I don't have to earn compassion.
- I don't need to make this smaller than it is.
- My experience is real.
I’m going to be borrowing some of that list, thank you.
Yeah I completely agree 100% and thank you for that list. That's actually very very helpful
I feel seen 😖😣😩😫😵😓
💚💚💚
Thank you for sharing this. I reached burnout a couple of years ago after pushing my way through so many degrees ,Aut/adhd ,undiagnosed eds ,mcas with now extreme brain fog in morning.
Single/sole parenthood my child now a young adult has moved out, finally 5 yrs into the career I've always wanted.... I scaled back from everything including people and social events, Thinking I just needed this mental break, But my body has decided that's not the end of decompressing.
It's like discovering and finding that sweet spot where you can finally let go of all the tension in your body, and then quickly realizing that tension is what was holding pieces together - and joints slip/pop or worse. ( Like stripping away anxiety too fast from someone with trauma past who relies on it to feel safe).
After having a few extreme muscle spasms in the middle of the night, And the opposite, my blood pressure dipping to 85/55 - It seemed sleep was the biggest issue come out laying down with hypermobility is not an option for me . What helped me personally and still helps is changing my entire life to everything standing up as much as possible. I got a million pillows and wedges for my bed and found the exact one sleeping spot that I have to stay in for the entire night supported by pillows all around me tucked under. When I get pain on that side I have to find another way. And not move from it while laying down.
I had to change all of my exercise and any physical activities to all standing up, no laying down exercising.
I'm still in this journey, Taking things slowly and movement very slowly has been most helpful... Which has been really hard because I've always been an extremely active person. My biggest dilemma right now is trying to find an actual physical therapist who specializes in hypermobility eds, and for the love of God, a stand-up/sit-up MRI machine in North Carolina. Random torn tendon, fun.
Focusing on sleep, and what I can do and can enjoy has been the most helpful thing for me, even when it means huge adjustments sometimes . Even though I have the need for good medical docs, Feels better staying away from them since I have not found receptive clinicians. I think finding better and more receptive care is the next. But yeah those days when nothing is working right, they are the absolute worst and it's hard to feel like it's not a curse. I keep imagining it is just now my body unwinding moving backwards towards healing... Just like the healing from burnout. That's what gives me hope.
💚💚💚