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Madelleine Müller

@madelleine.bsky.social
328 followers 664 following 35 posts

I write and sing about navigating chronic illness, severe #MECFS, and creativity from a feminist and anti-ableist perspective: www.bedperspective.com

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Madelleine Müller @madelleine.bsky.social · 25/11/2024
Living with #chronicillness is like an iceberg – people only see the very tip of it, and rarely (if ever) see everything going on beneath it: All the hard work we put into managing and navigating our physical, emotional, spiritual and mental bodies. www.bedperspective.com/p/the-power-...
bedperspective.com
The power of self-witnessing in chronic illness
My world is small, I’m very isolated and not many people see what is really going on beneath it all. Self-witnessing can be a way to alleviate the feeling of being invisible.
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Madelleine Müller @madelleine.bsky.social · 24/11/2024
I still get nightmares about hospitals where they make me do stuff I can't do. Medical PTSD is real and doctors should be educated on how to avoid this. #mecfs #pwme #longcovid #chronicillness
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Madelleine Müller @madelleine.bsky.social · 24/11/2024
Creativity requires a lot of brain power. When I got ill, I would get myself into a creative flow and not long after my brain would be on fire, I would have acid running through my veins, and the next day I would completely crash (PEM). #pwme #chronicillness www.bedperspective.com/p/navigating...
bedperspective.com
Navigating creativity with chronic illness
Chronic illness is what opened my creativity, but it is also what shut it down. Here’s how I navigate creativity while living with chronic illness.
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Madelleine Müller @madelleine.bsky.social · 23/11/2024
I spent years immersed in wellness culture as a yoga teacher and there is this idea that you subconsciously choose your illness. But it blames patients for their suffering. It paints a picture that we’re in control of our bodies and just aren’t working hard enough to recover #chronicillness #pwme
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Reposted by Madelleine Müller
Kelly @broadwaybabyto.bsky.social · 23/11/2024
It astounds me when friends & family - those who say they love me - vote for people & policies that cause me direct harm. When this harm comes to fruition (as it always does) and I point it out? It’s always “let’s not talk politics” It’s not “just politics” to vulnerable people. It’s life & death.
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Madelleine Müller @madelleine.bsky.social · 23/11/2024
The saying “don’t let illness define you” has a sub-text that disability is bad. But the fact is that able-bodied people have a lot to learn from us. We can be more empathetic, more compassionate, and more nuanced in our thinking… #chronicillness #mecfs #pwme www.bedperspective.com/p/dont-let-i...
bedperspective.com
“Don’t let illness define you,” they say. But this could be problematic.
We are often told to not let illness define us. But is this always possible?
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Madelleine Müller @madelleine.bsky.social · 22/11/2024
#ChronicIllness means spending time in dark places, often for long stretches before breaching for air. And while it’s a difficult time, I don’t think it’s wasted. We may surface with a deeper understanding of what it means to be human. #pwme #mecfs #longcovid
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Madelleine Müller @madelleine.bsky.social · 22/11/2024
Living with #disability / #chronicillness often comes with experiencing trauma regularly. Trauma can either be caused by individuals’ behaviour towards us or by institutional neglect, harm or disrespecting of our needs. It’s time society recognises the impact trauma has on us #mecfs #pwme #loncovid
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Madelleine Müller @madelleine.bsky.social · 22/11/2024
Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness
bedperspective.com
What it’s like to live with severe ME
I have lived with ME (also known as ME/CFS) for over twelve years now. In 2017 it turned severe. Here’s what it’s like.
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience. #pwme #mecfs #chronicillness #disabilityjustice
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Why “You Don’t Look Sick” Isn’t a Compliment: 1. #Chronicillness isn’t a visual condition—our struggles happen on the inside of our bodies. 2. Telling someone they don’t look sick invalidates their reality. 3. Just because I don’t look how you expect illness to appear doesn’t mean I’m not suffering.
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
This is encouraging! Especially since BC007 didn’t pan out. #mecfs
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Self-help literature tells us to visualise our goals and they will manifest. But research has debunked this idea. Instead, visualising the process or the steps to get to the goal is a lot more effective. Here is what #chronicillness taught me about creativity www.bedperspective.com/p/what-chron...
bedperspective.com
What chronic illness taught me about creativity
I feel like I now have a PhD in creativity. Chronic illness has taught me how I can create without the chaotic magic and under sub-optimal circumstances. This is what I’ve learnt.
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Decision fatigue is real. Especially when living with brain fog-enducing chronic illness. Deciding on this and that is exhausting when your energy is minimal, and your brain has slowed down. #mecfs
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
“Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” — Alison Kafer I wrote a piece about crip time and redefining productivity: www.bedperspective.com/p/embracing-... #disabilityjustice
bedperspective.com
Embracing Crip Time: Redefining Pace, Productivity, and Patience
Crip time challenges us to reconsider our relationship with time and pace. Here is what it entails.
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Any #mecfs peeps here that I can follow?
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Madelleine Müller @madelleine.bsky.social · 21/11/2024
Hi chronic illness and disabled folks! I’m Madelleine and I write and sing about chronic illness and creativity. My new album will hopefully be out in spring/summer 2025. I also write on Substack with articles and meditations and tips for your creativity: www.bedperspective.com
bedperspective.com
The Bed Perspective | Madelleine Müller (she/her) | Substack
Words and meditations about navigating chronic illness, severe ME/CFS, and creativity from a feminist and anti-ableist perspective. Click to read The Bed Perspective, by Madelleine Müller (she/her), a...
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