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  • About Me
    About Me

    A personal account of living with a neurological condition, including FND. I write about issues surrounding chronic illness, chronic pain and disability. Outside of being sick, I am an avid reader and love films and TV!

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  • Goodreads

    Rhiann's bookshelf: read

    Days at the Morisaki Bookshop
    really liked it
    Days at the Morisaki Bookshop
    by Satoshi Yagisawa
    Underneath the Sycamore Tree
    really liked it
    Underneath the Sycamore Tree
    by B. Celeste
    The Paris Agent
    it was amazing
    The Paris Agent
    by Kelly Rimmer
    Come Sundown
    it was amazing
    Come Sundown
    by Nora Roberts
    Every Move You Make
    it was amazing
    Every Move You Make
    by C.L. Taylor

    goodreads.com
  • Brain Lesion & Me
    Brain Lesion & Me
@serenebutterfly
Rhiann Johns

@serenebutterfly

Documenting life with neurological symptoms stemming from a young age and which left me undiagnosed for many years. Eventually diagnosed with FND
  • One of the hardest parts of this #cruise wasn’t the travelling itself. It was the days when my health meant i couldn’t leave the ship. As we arrived in new destinations, I found myself watching from my balcony instead. It struck me how familiar the feeling was. A few years ago, I wrote: “The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside my prison.” Sitting in the cabin, looking out at places I longed to explore, those words came back to me. At times, it felt as though I had simply exchanged one prison cell with four walls for another. The only difference was that the view beyond the balcony changed each day. Chronic illness and #disability have a way of teaching you that being close to something isn’t always the same as being able to experience it. Sometimes the world is right there in front of you, and yet it remains just out of reach. Thankfully, there were also moments of joy, moments of freedom, and moments of wonder. But I’d be lying if I said there weren’t days when watching from afar hurt more than i expected. #ChronicIllness #TravelWithDisability #CruiseLife
  • Another shot of the beautiful and majestic #NorwegianFjords! It’s been nearly two weeks since I returned which has involved a lot of rest and relaxation. I throughly enjoyed my time away but sadly, it didn’t come without numerous bad days and plenty of unwelcome symptoms of #chronicillness. But it also got me thinking about how much life with chronic illness and #disability resembles life at sea. The ship may have a destination, but it can’t control the weather. Plans change. Conditions shift. Some days the water is calm and the journey feels easy. Other days, even standing upright takes more effort than expected because of high waves and stormy conditions. Living with chronic illness feels much the same. You learn to adapt because you have no control. You pace yourself, watch for changes, and adjust course when your body has other ideas. #Cruising #ChronicallyIll
  • Such a gorgeous shot taken on Monday when docked in #Olden. The way the clouds are reflected in the water! 😍 The scenery in #Norway is absolutely spellbinding and gorgeous - a little slice of heaven! 🇳🇴 #NorwegianFjords #Cruise #PAndOCruises
  • Not a bad view to enjoy when doing some evening reading! #Holiday #Cruise #NorwegianFjords #Norway
  • Nights like this can feel incredibly lonely. When the world is quiet and sleep won’t come, it’s easy to feel like you’re the only one still awake. But you’re not. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #NEISVoid
  • It doesn’t end when the night does. The exhaustion lingers, the pain lingers, and somehow the day still expects you to keep going. This is what painsomnia really feels like. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #InvisibleIllness
  • This is one of the hardest things to explain about chronic pain. Medications helps, but it doesn’t make it disappear. It softens it, quietens it, makes it a little more manageable - but it’s still there. I think a lot of people don’t realise that. #ChronicPain #ChronicIllness #PainManagement #InvisibleIllness #NEISVoid
  • It’s not just the pain that keeps me awake. It’s the stillness, the quiet, the feeling of being the only one left awake. I wrote about what these nights really feel like, and the loneliness that comes with them. [link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
  • Time moves differently at night. When you’re lying awake in pain, every minute stretches, every hour lingers. I write about what those nights feel like, and the exhaustion that follows into the day and often the days that follow. [Link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
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One of the hardest parts of this #cruise wasn’t the travelling itself. It was the days when my health meant i couldn’t leave the ship. As we arrived in new destinations, I found myself watching from my balcony instead. It struck me how familiar the feeling was. A few years ago, I wrote: “The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside my prison.” Sitting in the cabin, looking out at places I longed to explore, those words came back to me. At times, it felt as though I had simply exchanged one prison cell with four walls for another. The only difference was that the view beyond the balcony changed each day. Chronic illness and #disability have a way of teaching you that being close to something isn’t always the same as being able to experience it. Sometimes the world is right there in front of you, and yet it remains just out of reach. Thankfully, there were also moments of joy, moments of freedom, and moments of wonder. But I’d be lying if I said there weren’t days when watching from afar hurt more than i expected. #ChronicIllness #TravelWithDisability #CruiseLife
@serenebutterfly
@serenebutterfly
•
Follow
One of the hardest parts of this #cruise wasn’t the travelling itself. It was the days when my health meant i couldn’t leave the ship. As we arrived in new destinations, I found myself watching from my balcony instead. It struck me how familiar the feeling was. A few years ago, I wrote: “The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing like Ariel that I could be part of the world outside my prison.” Sitting in the cabin, looking out at places I longed to explore, those words came back to me. At times, it felt as though I had simply exchanged one prison cell with four walls for another. The only difference was that the view beyond the balcony changed each day. Chronic illness and #disability have a way of teaching you that being close to something isn’t always the same as being able to experience it. Sometimes the world is right there in front of you, and yet it remains just out of reach. Thankfully, there were also moments of joy, moments of freedom, and moments of wonder. But I’d be lying if I said there weren’t days when watching from afar hurt more than i expected. #ChronicIllness #TravelWithDisability #CruiseLife
5 days ago
View on Instagram |
1/9
Another shot of the beautiful and majestic #NorwegianFjords! It’s been nearly two weeks since I returned which has involved a lot of rest and relaxation. I throughly enjoyed my time away but sadly, it didn’t come without numerous bad days and plenty of unwelcome symptoms of #chronicillness. But it also got me thinking about how much life with chronic illness and #disability resembles life at sea. The ship may have a destination, but it can’t control the weather. Plans change. Conditions shift. Some days the water is calm and the journey feels easy. Other days, even standing upright takes more effort than expected because of high waves and stormy conditions. Living with chronic illness feels much the same. You learn to adapt because you have no control. You pace yourself, watch for changes, and adjust course when your body has other ideas. #Cruising #ChronicallyIll
@serenebutterfly
@serenebutterfly
•
Follow
Another shot of the beautiful and majestic #NorwegianFjords! It’s been nearly two weeks since I returned which has involved a lot of rest and relaxation. I throughly enjoyed my time away but sadly, it didn’t come without numerous bad days and plenty of unwelcome symptoms of #chronicillness. But it also got me thinking about how much life with chronic illness and #disability resembles life at sea. The ship may have a destination, but it can’t control the weather. Plans change. Conditions shift. Some days the water is calm and the journey feels easy. Other days, even standing upright takes more effort than expected because of high waves and stormy conditions. Living with chronic illness feels much the same. You learn to adapt because you have no control. You pace yourself, watch for changes, and adjust course when your body has other ideas. #Cruising #ChronicallyIll
6 days ago
View on Instagram |
2/9
Such a gorgeous shot taken on Monday when docked in #Olden. The way the clouds are reflected in the water! 😍 The scenery in #Norway is absolutely spellbinding and gorgeous - a little slice of heaven! 🇳🇴 #NorwegianFjords #Cruise #PAndOCruises
@serenebutterfly
@serenebutterfly
•
Follow
Such a gorgeous shot taken on Monday when docked in #Olden. The way the clouds are reflected in the water! 😍 The scenery in #Norway is absolutely spellbinding and gorgeous - a little slice of heaven! 🇳🇴 #NorwegianFjords #Cruise #PAndOCruises
4 weeks ago
View on Instagram |
3/9
@serenebutterfly
@serenebutterfly
•
Follow
Not a bad view to enjoy when doing some evening reading! #Holiday #Cruise #NorwegianFjords #Norway
4 weeks ago
View on Instagram |
4/9
Nights like this can feel incredibly lonely. When the world is quiet and sleep won’t come, it’s easy to feel like you’re the only one still awake. But you’re not. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #NEISVoid
@serenebutterfly
@serenebutterfly
•
Follow
Nights like this can feel incredibly lonely. When the world is quiet and sleep won’t come, it’s easy to feel like you’re the only one still awake. But you’re not. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #NEISVoid
1 month ago
View on Instagram |
5/9
It doesn’t end when the night does. The exhaustion lingers, the pain lingers, and somehow the day still expects you to keep going. This is what painsomnia really feels like. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #InvisibleIllness
@serenebutterfly
@serenebutterfly
•
Follow
It doesn’t end when the night does. The exhaustion lingers, the pain lingers, and somehow the day still expects you to keep going. This is what painsomnia really feels like. #ChronicPain #Painsomnia #ChronicIllness #ChronicallyIll #InvisibleIllness
1 month ago
View on Instagram |
6/9
This is one of the hardest things to explain about chronic pain. Medications helps, but it doesn’t make it disappear. It softens it, quietens it, makes it a little more manageable - but it’s still there. I think a lot of people don’t realise that. #ChronicPain #ChronicIllness #PainManagement #InvisibleIllness #NEISVoid
@serenebutterfly
@serenebutterfly
•
Follow
This is one of the hardest things to explain about chronic pain. Medications helps, but it doesn’t make it disappear. It softens it, quietens it, makes it a little more manageable - but it’s still there. I think a lot of people don’t realise that. #ChronicPain #ChronicIllness #PainManagement #InvisibleIllness #NEISVoid
1 month ago
View on Instagram |
7/9
It’s not just the pain that keeps me awake. It’s the stillness, the quiet, the feeling of being the only one left awake. I wrote about what these nights really feel like, and the loneliness that comes with them. [link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
@serenebutterfly
@serenebutterfly
•
Follow
It’s not just the pain that keeps me awake. It’s the stillness, the quiet, the feeling of being the only one left awake. I wrote about what these nights really feel like, and the loneliness that comes with them. [link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
1 month ago
View on Instagram |
8/9
Time moves differently at night. When you’re lying awake in pain, every minute stretches, every hour lingers. I write about what those nights feel like, and the exhaustion that follows into the day and often the days that follow. [Link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
@serenebutterfly
@serenebutterfly
•
Follow
Time moves differently at night. When you’re lying awake in pain, every minute stretches, every hour lingers. I write about what those nights feel like, and the exhaustion that follows into the day and often the days that follow. [Link in bio] #Painsomnia #ChronicPain #ChronicIllness #InvisibleIllness #NEISVoid
1 month ago
View on Instagram |
9/9

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