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Cover image showing a cruise ship sailing through a dramatic Norwegian fjord, with mountains and a calm sea beneath a cloudy sky. The title reads “Life at Sea: Finding Hope on an Unpredictable Journey.”
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Life at Sea: Finding Hope on an Unpredictable Journey

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As the ship eased into port, passengers gathered eagerly at the gangway, ready to explore another new destination. I, however, could only watch from my balcony, knowing that my body would anchor me to the ship that day. The world beyond the gangway remained just out of reach. I knew that feeling all too well. In that moment, I realised that travelling with chronic illness has much in common with life at sea. Both have taught me that no matter how carefully I plan, forces beyond my control can still alter a journey’s course.

Stunning scenery of the Norwegian Fjords and the ripples from the ship as it os sailing away
"I can plan my journey, but I can never control its course." Share on X

Beneath The Surface

Looking out across the vast ocean from my balcony, I found myself drawn to what lay on the surface: the gentle swell of the waves, the endless horizon, and especially the sunlight dancing across the water. It was a calming, mesmerising sight, yet the surface told only a fraction of the story. Beneath it lay an unseen world, hidden from view but influencing everything above. The more I watched the sea, the more I recognised something of myself in it.

Life with chronic illness often feels much the same. People see the smile, the photographs and the moments I manage to enjoy. But what they don’t see is everything beneath the surface: the pain that refuses to relent, the dizziness that unsettles my balance, the weakness that quietly limits my independence, and the exhaustion that shadows even the happiest moments. 

My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey. Yet my photographs revealed only a small part of my story. 

Travel-themed graphic showing a cruise ship balcony overlooking a blue sea and mountainous coastline, with photographs of fjords arranged across a travel map alongside sunglasses. Text reads, “My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey. Yet my photographs revealed only a small part of my story.”
"My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey." Share on X

That is one of the strange contradictions of travelling with chronic illness. I can be somewhere beautiful, surrounded by everything I have looked forward to, while my body reminds me of its limitations 

When the Journey Changes

The sea reminds me I can plan an itinerary, but I can’t always follow it.

On a cruise to Norway and Iceland many years ago, the weather prevented the ship from entering two ports. Two excursions I had eagerly anticipated disappeared from my itinerary almost as quickly as they had appeared. 

No one caused the problem, and I couldn’t change it. The sea had made its decision, and I had no choice but to accept it.  

I remember the disappointment keenly, not just because of the places I didn’t get to see, but because of the experiences I had imagined and quietly mourned as they slipped away.

Living with chronic illness has taught me that my body can be just as unpredictable. Sometimes the weather changes a journey’s course. Other times, pain, weakness, or dizziness keeps me from stepping ashore. 

Photograph of a woman wearing a sun hat sitting on a balcony overlooking a calm blue sea at sunset. A dark brushstroke overlay contains the text, “Living with chronic illness has taught me that my body can be just as unpredictable.”
"Living with chronic illness has taught me that my body can be just as unpredictable." Share on X

Over the years, I have missed excursions I had carefully planned, remained on board while others explored, and watched beautiful places drift past from the quiet of a balcony. 

The grief isn’t simply about missing a destination. It is about missing the opportunity to create memories there. Something I had looked forward to may now exist only in someone else’s photographs and stories. 

Watercolour-style postcard showing a woman seen from behind on a cruise ship balcony, looking across the sea towards the dramatic Norwegian fjords, with mountains, snow-capped peaks and a waterfall in the distance. To the right of the image is text which says "Something I had looked forward to may now exist only in someone else's photographs and stories."
Not every destination becomes a memory of my own. Sometimes, I have to watch from a distance as others make the memories I had hoped to create.
"The grief isn’t simply about missing a destination. It is about missing the opportunity to create memories there. Something I had looked forward to may now exist only in someone else’s photographs and stories." Share on X

I have learned that disappointment comes in many forms. Sometimes, it arrives as a storm rolling across the horizon. At other times, it arrives quietly, in the form of a body that simply cannot do what my heart longs for. 

Learning to Adapt

Both the sea and chronic illness have taught me the importance of adapting to changing conditions.

At sea, a change in weather conditions can mean altering the route, changing the day’s plans, or waiting for conditions to improve. I remember one cruise when the ship couldn’t dock at a port on the itinerary. An unexpected outbreak of food poisoning on another ship had made the port unavailable. The captain quickly adapted and diverted the ship to a different port. 

I have had to learn to do something similar with my own body. 

Sometimes adaptation means accepting that I cannot step ashore and finding other, quieter ways to enjoy the day. Other times, it means slowing down, resting when I would much rather be exploring, or accepting that I may only manage part of what I hoped to do. Sometimes it means using my wheelchair instead of relying on my crutch. 

Picture of a sea with the quote 'Sometimes adaptation means accepting that I cannot step ashore and finding other, quieter ways to enjoy the day.' and the social media handle @serenebutterfly underneath

None of this comes easily. 

Frustration still swells whenever my body places limits on experiences I have eagerly awaited. There is still a part of me that wants to push through, to pretend I can manage what I had planned and refuse to let my symptoms dictate my day. 

"There is still a part of me that wants to push through, to pretend I can manage what I had planned and refuse to let my symptoms dictate my day." Share on X

Sometimes, that way is surprisingly small.

 It might mean spending an afternoon on the balcony watching the coastline pass by, taking photos from the ship, or simply resting without feeling guilty. I imagined a different experience when I first planned the trip, but I still treasure the memories I made.

Listening to My Body

Spending time at sea has also taught me to notice the smallest changes. 

I’ve noticed the creaking sounds of the ship as the waves begin to swell. The hangers tap together as the sea beneath my feet becomes increasingly turbulent. Around me, chairs on the balcony shift and slide as the wind intensifies, while the sky darkens dramatically before rain, thunder, and lightning arrive. Just this year, I saw this in Hamburg from our balcony window: a sudden flash of lightning, followed by a violent rumble of thunder. Then the heavens opened, and the streets below were soon awash with rain. 

Picture of Hamburg with red brick building and a church spire in the distance
A picture of Hamburg before the heavens opened!

Sometimes the change is obvious. Other times, conditions shift quietly, long before I am consciously aware of what is coming. 

Living with chronic illness has made me just as observant of my own body. 

"Living with chronic illness has made me just as observant of my own body." Share on X

Over time, I have learned to recognise the earliest signs that a difficult day lies ahead: a little more fatigue than usual, legs that feel heavier than the day before. Dizziness can suddenly intensify. Sometimes pain starts as a whisper before it demands my attention.

Other people may never notice these changes. For me, they can be the difference between managing a day and pushing myself beyond what my body can safely handle. 

Listening to those warning signs is not always easy. Sometimes it means accepting that the journey I planned is no longer the journey I can take. 

The acceptance can feel like a loss. 

But it can also be an act of kindness towards myself. 

Still Part of the Journey

Years ago, I wrote about feeling trapped within the four walls of my home, longing to be part of the world beyond them. Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness. 

"Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness." Share on X

Sometimes my prison had portholes instead of windows, and a balcony instead of a garden. 

Photograph of a cruise ship cabin with a porthole window and open balcony overlooking blue sea and snow-capped mountains. Text reads, “Cruising reminded me that changing the scenery doesn’t necessarily change the reality of living with chronic illness. Sometimes my prison had portholes instead of windows, and a balcony instead of a garden.”

Yet it also reminded me of something else. 

Even when I couldn’t step ashore, I was still part of the journey. 

The sea continued to unfold before me. The coastline still slipped past. The light changed across the water. The ship carried me towards places I had dreamed of seeing, while life continued around me. 

In those ever-changing waters, I found reflections of my own life that I may never have noticed if I had remained on land. 

Perhaps that is why life at sea seems so familiar to me. 

Beautiful scene in the Norwegian Fjords with the mountains perfectly mirrored on the water
A scene in the Norwegian Fjords as it is docked in a port. To the left of the picture is buildings in the small town
Scene in the Norwegian Fjords with a cruise ship in the distance
Beautiful scene of the Norwegian Fjords with snowtop moutains and blue skies and clouds overhead

Every journey begins with hope, but neither the ocean nor my body promises me the destination I imagine. Sometimes those hopes become cherished memories that I look back on with quiet gratitude. Other times, they remain hopes because the sea, or my body, quietly changes course before they can become memories. 

But some days, my body is kinder. 

Days when I wandered unfamiliar streets and stood in awe at breathtaking landscapes, particularly in Norway. For a little while, chronic illness felt as though it had loosened its grip.

I never take those rare moments for granted.

If anything, living with chronic illness has taught me to savour them more deeply. I know that neither my body nor the sea can promise me another opportunity to experience them. 

Reflections on a Life at Sea with Chronic Illness

Reflecting on the cruises I’ve taken, I know I will never forget the amazing places I have visited. 

But I will also remember the places I didn’t.

Perhaps that is another lesson travelling with chronic illness has given me: I cannot always measure a journey by the places I manage to reach. Instead, I measure it by the moments I find along the way, even when the journey looks nothing like the one I imagined.

"I cannot always measure a journey by the places I manage to reach. Instead, I measure it by the moments I find along the way, even when the journey looks nothing like the one I imagined." Share on X

Life at sea has reminded me that I can control neither the sea nor my chronic illness. Both demand respect. Both require patience. And both ask me to adapt when conditions suddenly change. 

Perhaps that is why, when I look back on my experiences at sea, I feel an unexpected sense of peace. 

Watercolour-style background in shades of blue and green, resembling gently moving water. Handwritten text reads, “The sea has never promised certainty. Neither has my body.”

The sea has never promised certainty.

Neither has my body. 

"The sea has never promised certainty. Neither has my body." Share on X

Yet despite everything, both have carried me further than I once thought possible. 

Graphic featuring a cruise ship sailing through a dramatic Norwegian fjord surrounded by steep, snow-capped mountains and waterfalls. Text reads, “Life at Sea: Finding Hope on an Unpredictable Journey,” with brainlesionandme.com at the bottom.
A tranquil Norwegian fjord reflects snow-capped mountains and surrounding woodland beneath a blue sky. Overlaid text reads “Life at Sea: Finding Hope on an Unpredictable Journey” and “Lessons in living with chronic illness, one unpredictable journey at a time.”
Travel collage featuring three photographs of Norwegian scenery, including steep green mountains surrounding a fjord, snow-capped mountains reflected in a lake, and a cruise ship sailing past a coastal town. The images are arranged on a torn-paper background with a dotted travel route and ship icon. Text reads “Life at Sea: Finding Hope on an Unpredictable Journey.”






















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Graphic on a navy blue background with large white text reading, “What’s it like lying awake with chronic pain.” A vertical sidebar says “Painsomnia.” Below, a photo shows a person sitting on a bed at night with their face in their hands beside a lit bedside lamp, conveying distress and sleeplessness. Text at the bottom reads “brainlesionandme.com.”
In Chronic Illness

Painsomnia: What It’s Like Lying Awake With Chronic Pain

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Painsomnia: a form of insomnia caused by chronic pain, where exhaustion meets a body that refuses to rest 

What Painsomnia Feels LIKe at Night

3:17 glows from my bedside clock, mocking me in the darkness. It’s a time I’ve come to know intimately, not because I’ve been out living, but because painsomnia, that insomnia caused by chronic pain, keeps me awake when the rest of the world sleeps. I lie in bed, the stillness and quiet around me, yet inside my body, everything feels loud; every ache, every pulse, impossible to ignore. It’s a contradiction I live with nightly; a body desperate for rest, yet unable to find it because of pain, and so I find myself here again, in painsomnia. 

"A body desperate for rest, yet unable to find it because of pain." #Painsomnia Share on X
Illustrated graphic on a dark blue background with yellow text reading, “What is Painsomnia?” White text explains that painsomnia is a form of insomnia caused by chronic physical pain, where exhaustion meets a body that refuses to rest. Below, a person lies awake in bed looking distressed beside a digital clock showing 01:30 PM. Decorative stars and doodles surround the scene, and the handle “@serenebutterfly” appears at the bottom.

When The World Goes Quiet, My Body Doesn’t

As the night deepens, everything around me grows quieter, and that quiet only seems to amplify what I feel, which is often the hardest part of painsomnia. I don’t know if the pain actually worsens, but it always feels like it does at night. During the day, I can almost pretend I’m fine, my pain blending into the background of everything else. 

"The rest of the world sleeps, and I lie awake negotiating with my own body." #Painsomnia Share on X

Because during daylight, there is always something to do: errands to run, emails to answer, dishes to wash. Conversations fill the gaps. There are places to be, books to read, and television to switch on and lose myself in. Distractions are everywhere, and for a while, they soften the edges of what I feel. But at night, when all of that falls away, there’s nothing left to buffer it. 

"Distractions are everywhere, and for a while, they soften the edges of what I feel. But at night, when all of that falls away, there’s nothing left to buffer it." Share on X
Illustration on a dark blue background of a person sitting wrapped tightly in a pink blanket. Above them, the time reads “3:17 AM” and a battery icon says “LOW.” White text below reads, “The rest of the world sleeps, and I lie awake negotiating with my own body.”

There’s no background noise from the world beyond my window, no text messages arriving, no sound beyond my bedroom at all. There is only silence, and in that silence, my pain expands, growing louder. I can almost feel it stretching itself out, claiming space, demanding my full attention. Without anything to distract me, even the smallest ache becomes impossible to ignore. 

Time Moves Differently When You Can’t Sleep

I glance back at the clock, watching the minutes change slowly. Time stretches in a way it never does during the day. That is the strange rhythm of painsomnia. Each minute slowly drags itself forward while I lie there, fully aware of every second I’m still awake. Ten minutes feels like an hour. An hour feels like a small lifetime. I close my eyes, turn onto my side, adjust the pillows once more, hoping this time I might actually find sleep. For a moment, it almost feels possible. But then it slips away again. A dull ache creeps back in, then sharpens, pulling me back into full awareness of my body. I start over again: shifting, adjusting, trying to outmanoeuvre pain that refuses to yield.

"Ten minutes feels like an hour. An hour feels like a small lifetime." #Painsomnia Share on X
Graphic on a dark blue background with white handwritten text reading, “Ten minutes feels like an hour. An hour feels like a small lifetime.” On the right side, a large partial illustration of an alarm clock emphasizes the slow passage of time during sleeplessness.

The Loneliness of Painsomnia

It’s in these quiet moments that I feel the loneliness of painsomnia begin to settle in. The rest of the world is asleep, and instead, I lie wide awake, feeling like the only one still up. The house is still, peaceful, and as I lie, I become aware of every small sound; the faint creak of the pipes, the rain tapping on my bedroom window. They’re the only signs of life, the only company I have. I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle. 

"I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle." Share on X

It makes me more aware of everything. I find myself listening for any kind of sound, just to remind myself that the world is still there beyond my room. 

Illustration on a dark blue background with white text reading, “I feel a strange kind of isolation, exhausted yet awake, alone in a body that refuses to settle.” Below the quote is the handle “@serenebutterfly.” The image shows a person sitting with their head resting on their hand, appearing tired and withdrawn, emphasizing loneliness and sleeplessness.

I look for anything to take my mind elsewhere

Sometimes, I reach for my phone, one of the small distractions I use when pain and painsomnia keep sleep out of reach. I fall into the familiar habit of doomscrolling, letting one thing blur into the next just to pass the time, to fill the deafening silence. I try watching something, anything quiet enough not to disturb anyone else in the house, the brightness turned down, the volume barely there. It never seems to help, not in any lasting way, but it gives my mind somewhere else to go for a little while; something other than the pain that won’t leave me alone. 

There’s only so much I can do

Eventually, even that stops working. In frustration, I start the cycle again: shifting, adjusting, trying to find a position that hurts less. By this point, painsomnia has usually been with me for hours, and I’ve usually taken as much pain medication as I can safely take. I know how long I need to wait before I can take anything else, and I find myself weighing up whether it’s worth taking it now or saving it for later, in case the pain worsens. But even then, I’m not sure it will make a difference. 

Illustration of an orange pill bottle tipped over with pink tablets spilling out onto a light beige background. Brown text below reads, “Pain medication doesn’t switch it off. It just lowers the volume.” The handle “@serenebutterfly” appears underneath.

Even then, my pain medication isn’t a magical switch that shuts the pain off. In my life, medication merely lowers the volume. It often turns a scream into a moan. Sometimes, it takes the edge off, but often it doesn’t. There’s no real way of knowing, and that uncertainty becomes part of the night too; another thing to sit with, another thing to wait out. 

The night doesn’t end when the day begins

Eventually, I run out of things to try. I have nothing left but to lie there and wait it out. Sleep feels out of reach, something I can’t quite get to, no matter how tired I am. Instead, the night stretches ahead of me, not as a time for sleep, but as something to endure: hour by hour, minute by minute. 

"The night stretches ahead of me, not as a time for sleep, but as something to endure: hour by hour, minute by minute." #Painsomnia Share on X

How Painsomnia Follows Me into the Day

Yet the exhaustion doesn’t just disappear with the appearance of daylight. It lingers, settling into every facet of my day. It settles into conversations, into small tasks, into movements that should feel simple, but instead feel heavy and cumbersome. Morning arrives whether I’ve slept or not, and painsomnia leaves its mark either way. And my routine starts all over again. I wake up. Then I take my medication. I prepare myself for the day ahead and finish the morning chores. Still, the exhaustion from the night lingers. I carry the weight of it through the rest of the day. That weight goes beyond ordinary tiredness.

Illustration of a person lying exhausted on a couch, one arm over their forehead, suggesting fatigue and discomfort. A pair of shoes sits on the floor nearby. On a dark blue background, white text reads, “Painsomnia is more than sleeplessness. It follows you into the day.”
"Painsomnia is more than sleeplessness. It follows you into the day." Share on X

This is what painsomnia really is. It’s not just a bad night’s sleep or the occasional restless evening. It’s a relentless cycle: night after night of trying, adjusting, waiting, enduring, followed by days spent carrying its aftermath. Much of it happens behind closed doors, in the quiet hours when the rest of the world is asleep, unnoticed and often unspoken. Living with painsomnia means repeating this cycle night after night. And I know that when night comes again, I’ll be back there. If you’re there too, you’re not the only one still awake. 

Illustration of a person sitting hunched forward at night under a dark, starry sky, appearing tired and in discomfort. White text above reads, “If you’re awake in pain tonight, you’re not the only one still awake,” conveying a message of shared experience and reassurance.
"If you’re awake in pain tonight, you’re not the only one still awake." #Painsomnia Share on X "When night comes again, I know I’ll be back there." #Painsomnia Share on X
Graphic showing a person sitting up in bed at night with their head in their hands, appearing distressed and unable to sleep. Below the image, text reads, “Painsomnia: What it’s like lying awake with chronic pain,” followed by “brainlesionandme.com
Purple-toned promotional image of a person sitting on the edge of a bed at night, knees drawn up, suggesting discomfort and sleeplessness. Overlaid text reads “Painsomnia” and “What’s it like lying awake with chronic pain,” with “brainlesionandme.com” at the bottom






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Cover image for a blog post titled “The Truth About Life in an Unpredictable Body,” showing a woman standing with a pink leopard-print crutch, highlighting confidence and adaptation while living with dynamic disability.
In Chronic Illness

Dynamic Disability: The Truth About Life in an Unpredictable Body

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Mornings Are Negotiations

Every morning, I wake up and feel a quiet kind of betrayal. With a dynamic disability, my body, once something I trusted without question, now greets me with an ache I never agreed to. I lie there, still, taking inventory: fatigue, pain, dizziness, or that familiar, nameless sense of wrongness. Living this way means each day starts with an assessment, a careful negotiation with a body that doesn’t always tell the truth.

"Living with a dynamic disability means every day starts with a careful negotiation with a body that doesn’t always tell the truth." Share on X
Pink leopard print background with the definition of dynamic disability which is when the severity or quantity of symptoms related to a disability varies over time, day by day or even hour by hour thereby making each day different and unpredictable

When The Mirror Lies Back

Some days, when I catch my reflection, I see the person I used to be. Upright. Capable. Recognisable. For a moment, I believe in her again.

Then I move too fast, or stand a beat too long, or reach for something just beyond my grasp, and the illusion cracks. My balance wavers. My strength drains away.

Outside, the world carries on uninterrupted. The kettle clicks off. Cars pass. Life hums along. Inside my body, the rules rewrite themselves without warning. It feels like being gaslit by my own body. I insist I’m fine. My body quietly, stubbornly disagrees.

The Cruelty of ‘Sometimes’ in a Dynamic Disability

That’s the hardest part of a dynamic disability: the inconsistency. If it were always bad, I could brace myself. If it were always visible, I wouldn’t have to explain.

Like a lot of others, my disability isn’t static. My disability shifts. It fluctuates. Sometimes it changes by the hour. Often by body offers me flashes of my old self, only to snatch them back. I never know which version of me I’ll wake up to. Each day arrives carrying the same unspoken question: Who will I be today?

Graphic with a bright pink leopard-print background and a yellow speech-bubble shape in the center. Inside the bubble is text that reads, “My disability isn’t static. It shifts, it fluctuates, sometimes it changes by the hour.”
"Sometimes my body gives me flashes of my old self, only to snatch them back. I never know which version of me I’ll wake up to." Share on X

The version whose body cooperates, or the one who can’t trust her own legs?

Too Disabled, Not Disabled Enough

This unpredictability breeds imposter syndrome in my life with disability. On good days, I feel dishonest calling myself disabled. On the days I look fine, I feel as though I break an unspoken rule about what disability should look like.

"On good days, I feel dishonest calling myself disabled. On the days I look fine, I feel as though I break an unspoken rule about what disability should look like." Share on X

I live in a liminal space, always too much of one thing and never enough of another. There’s a quiet fear that people think I’m exaggerating, being dramatic, or lying outright.

The Complicated Gifts of Mobility Aids

Mobility aids complicate that fear.
They also save me.

Because my disability changes, my mobility aids change with it. Some days, I don’t need anything at all. I walk unaided and, for a while, I forget. Other days, I reach for support, fingers tightening around my crutch as my legs tremble beneath me. And then there are the worst days, when I need my wheelchair.

Illustration of a person’s head and shoulders centered on the page. Above their head are three colorful thought bubbles showing the same person standing without an aid, walking with a cane, and using a wheelchair. Below the illustration is the text, “Different Aids for Different Days.”

Each aid corresponds to a different version of me. Some days, I use all three within twenty-four hours, an exhausting one-woman show with far too many costume changes.

“But you Were Fine Yesterday”

That constant change attracts scrutiny. People crave consistency. They expect that if you need a wheelchair once, you’ll need it always. When I don’t, I can feel their confusion harden into suspicion, hovering like a question mark.

You needed that yesterday, so why not today?

I ask myself that too.

I feel exposed when I take out a mobility aid after being seen walking without one, as if I’ve somehow been caught in a lie.

Bright pink graphic with a lighter pink speech-bubble shape containing the text, “Looking fine doesn’t mean being fine.” Below the text is an illustration of an open orange prescription pill bottle tipped on its side, with pink pills spilled out and the lid nearby.

Relief, Too

And yet there is relief.

Because when I use the right aid for the right day, I don’t just survive. What changes is my ability to participate: fear loosens its grip, my energy stretches further, and a sense of autonomy returns.

Mobility aids are tools of independence, not defeat. Each one adapts to my needs without erasing my agency or style.

"Mobility aids don’t mean giving up. They mean adapting. They are tools, not symbols of defeat." Share on X

The Pink-Leopard Print Revelation

One of those tools is my pink, leopard-print crutch.

I love it. I really love it.

It isn’t grey, or sterile, or apologetic. It’s bold. Playful. A flash of joy in a world that so often renders disability in muted tones. It’s unapologetically me.

When I hold it, I don’t feel smaller or weaker. I feel visible in the right way. It supports my body, yes, but it also supports my identity. It says: Yes, I need help. And yes, I am still myself.

Choosing Visibility Instead of Disappearing

My crutch, my trusted sidekick, has been with me through every fall, every stubborn attempt to stay upright, every tear behind closed doors. It changes how I move through the world, helping me stand taller even when my body resists.

Illustration of a person standing and holding a forearm crutch. They wear a pink patterned short-sleeve shirt, dark blue pants, and white sneakers. The crutch is black with a pink, leopard-print pattern. To the right of the figure is a large quote that reads, “This crutch isn’t just about mobility. It’s joy, confidence, and a piece of myself I thought I’d lost.”

The sting of needing support softens when that support feels chosen rather than imposed. I didn’t settle for something that made me disappear. I chose something that made me feel more like me. Because if disability is unavoidable, I might as well accessorise.

"If disability is unavoidable, I might as well accessorise." Share on X

A Little Braver With Support

On the days I use it, I feel a shift inside myself. I’m braver. Less apologetic. I stop trying to pre-emptively explain my existence.

My crutch becomes part of my outfit, part of my presence, part of how I show up. It reminds me that disability doesn’t erase joy or style. And honestly? It feels really good when people compliment my bright pink, leopard-print crutch.

The Imposter Syndrome Still Whispers

Even so, the doubt doesn’t vanish.

There are moments when I wonder: am I using this because I truly need it, or because I’m afraid? And then my legs buckle, or begin to give way, and the answer arrives clear and unarguable.

Yes. I need it. Trusting my body means listening when it asks for support, even if it didn’t ask yesterday.

Learning A New Measure of Success With a Dynamic Disability

Living with a dynamic disability is a life of constant recalibration. I plan less rigidly now, building flexibility into my days and scheduling rest with the same intention I once reserved for productivity.

Success is no longer about how much I’ve done. It’s about whether I’ve respected my limits.

"Success is no longer about how much I’ve done. It’s about whether I’ve respected my limits.” Share on X

Making Peace With a Changing Body

The grief for my former body remains, along with days when the unfairness of it all feels especially heavy. I didn’t consent to the uncertainty, the negotiations, or the constant self-doubt that came with it.

But slowly, I’m learning that my body isn’t my enemy. It isn’t lying to me. It’s speaking in a language I’m still learning to understand.

I Am Not an Imposter – I Am Complex

Illustration on a pink background of a person standing and holding a forearm crutch with a pink leopard print design. They wear a matching pink leopard print shirt, dark blue pants, and white sneakers. Decorative sparkles appear near the text. Large text reads, “My pink-leopard print crutch doesn’t contradict my strength. It complements it.” The creator handle “@serenebutterfly” appears at the bottom.

I walk unaided some days and lean on a crutch on others—capable and limited all at once. I’m not an imposter; I’m complex.

"I walk unaided some days and lean on a crutch on others—capable and limited all at once. I’m not an imposter; I’m complex." Share on X

My disability is real even when it’s invisible. My support is valid even when it changes. Because disability looks different for everyone and can change from one day to the next in the same body.

My pink, leopard-print crutch doesn’t contradict my strength. It complements it.

"My pink, leopard-print crutch doesn’t contradict my strength. It complements it." Share on X

Showing Up, However I Can

When people ask how I am, I try not to default to fine. Sometimes I say, “I’m managing.” Sometimes, “Today’s a crutch kind of day.” Other times, I simply say, “I’m here.”

And that is enough.

I show up in whatever way my body allows that day: not as a failure, but as an act of resilience and honesty. It’s me, standing in the middle of unpredictability, choosing adaptation over denial, colour over invisibility, and compassion over shame.

"I show up in whatever way my body allows that day: not as a failure, but as an act of resilience and honesty." Share on X

And often, I do it in pink leopard print.

Illustration of a person standing indoors in front of a sliding glass door that opens onto a balcony. They are holding a forearm crutch with a pink leopard-print design and wearing a matching pink leopard-print short-sleeve shirt and dark blue pants. They have short blond hair and wear glasses. One foot rests lightly on the floor while the other leg bears weight. Curtains frame the door, and a desk and chair are visible to the side.
Blog cover image with the title “Dynamic Disability: The Truth About Life in an Unpredictable Body” on a muted blue background, featuring a minimalist line illustration of a thoughtful woman and the website brainlesionandme.com.
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A yellow background features text at the top in white, bold typeface stating 'The Magic of Hope In Chronic Illness.' Beneath is the sun, bright in the sky, with a pale pink sky, and a rainbow reflected in the water. Near the bottom, the URL of the blog is written in white bold letters with a yellow background matching the top
In Chronic Illness

The Magic of Hope In the Storm of Chronic Illness

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When the Days Blur

"Living with chronic illness is like battling through an endless storm. Some days bring gentle swells. Others, it’s all I can do to stay afloat." Share on X

A chronic illness turns life into a constant fight against an endless storm – some days, it’s gentle swells; others, it’s all I can do to stay afloat. I fight to keep my head above water, as pain, fatigue, and the invisible weight of it all threaten to pull me under. But through these waves, I’ve discovered something powerful: the quiet but steady force of hope. For me, hope and chronic illness are inseparable – hope is what keeps me moving forward, even when my body tries to hold me back. I’ve learned that despite the challenges of chronic illness, hope is what keeps me afloat.

"Hope and chronic illness are inseparable — hope is what keeps me moving forward, even when my body tries to hold me back." Share on X

Let me drop anchor for a moment and get real. This life isn’t easy. 

Some days blur into each other so completely that I lose time — not because I’m busy, but because I’m not. 

I wake up in the same bed, in the same body that refuses to cooperate and face the same routines that feel more like rituals of survival than living. Chronic illness has shrunk my world. It has weighed down my choices, flattening my day into cycles of symptoms, medications, appointments and recovery. Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond.

"Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond." Share on X

In the monotonous cycle of symptoms and exhaustion, it’s easy to feel lost. But I’ve found that hope and chronic illness, two opposing forces in my life, can coexist. It’s this hope that pulls me through the haze and reminds me there’s still a world beyond these four walls.

"Even from my bed, even on my worst days, I can still dream of the horizon." Share on X

Holding Onto Hope

But here’s the lifeline I cling to: hope. And for me, hope takes the form of a cruise ship. 

For me, holidays are so much more than just a break from the normality of daily life. They’re lifelines. Knowing I’ll be stepping aboard a ship of dreams has become a lighthouse in the fog — a bright spot on the calendar that gives structure to the shapelessness of sick days and sleepless nights. It’s so much more than a holiday; it’s a reason. A reason to get through the next appointment, the next flare-up, the next moment of despair when the walls of my bedroom feel like they are closing in. It’s a reason to believe that something different, something joyful, lies ahead. 

"It’s so much more than a holiday — it’s a reason. A reason to believe that something joyful still lies ahead." Share on X

THE JOY OF ANTICIPATION

At the sight of the confirmation email, anticipation begins to fizzle inside of me. Every part of the planning process feels like I’m reclaiming a little bit of control. Browsing the deck plans, researching shore excursions, imagining myself watching the sunset over endless water, each detail becomes a thread stitching together a tapestry of joy. 

Each cruise I plan is a beacon – proof that hope and chronic illness can coexist. Even my body demands caution, the excitement of the journey ahead reclaims a part of me that illness often tries to take away.

I imagine myself there, not enduring but experiencing. 

"I imagine myself there, not enduring — but experiencing." Share on X

It doesn’t matter that I might need a wheelchair or that I have to schedule my medications like a military operation. It matters that I’m reclaiming a part of myself that illness has stolen from me, and reclaiming a sense of freedom, as the ships set sail, and the horizon looms ahead of me. The vastness of the water opens in front of me, and suddenly, the world feels vast and full of possibility again. 

Memories That Keep Me Afloat

There, I’m not just a patient or a set of symptoms, but a person sipping a fruity mocktail garnished with an absurdly cheerful umbrella. I enjoy the feel of the sun on my face and the wind in my hair. Yes, pain and fatigue still come with me. But they’re not what I remember most. 

I think back to the moments that have stayed with me from past cruises, the memories that shine through the fog. It’s not the pain that I remember, but the history and beauty of the old part of Estonia. I only remember being awestruck at seeing The Little Mermaid for myself, finally in Copenhagen. In Stockholm, I remember the fun and joy of the Abba Museum, singing and dancing along to songs I know so well.

And it reminds me that joy is still possible. That my life, even with its limits, still has room for magic. Most of all, sitting on that balcony with miles of ocean beyond reminds me that I’m still living, not just enduring.

"Joy is still possible. Even with limits, even with pain — there’s still room for magic." Share on X

Riding The Rough Waters

Of course, it’s not always plain sailing. It’s not a cure, nor does it erase the reality of my illness. I have had to expect and accept the inevitable bad days. But they feel somehow different at sea. They don’t feel as heavy when the world outside my window is constantly moving, changing, expanding. I don’t feel as stuck. After a long day exploring wherever we’ve happened to dock, I feel a sense of accomplishment. I’m finally able to feel like I’m achieving something, instead of putting my life on hold until I’m better. There’s still life happening, and I get to be a part of it — and living it — even from my cabin. 

Anchors on Dark Days

Having something on the horizon fuels hope. The hope that whispers to me during my darkest moments refuses to let me give up. And I’ve learnt that hope doesn’t have to be big or Instagram-worthy. Its shape doesn’t have to be a cruise ship, or a plane ticket, or a passport stamp. Sometimes, it’s something much smaller. I find it during an impromptu lunch with a friend. A new book that I’ve been waiting with bated breath to read. A film I’ve been wanting to see. A day where the pain eases just a little.  A new show to binge when the fatigue won’t let me move. These are my anchors, too.  

"I’ve learned that hope doesn’t have to be big or Instagram-worthy. Sometimes, it’s just a good book or a moment of quiet relief." Share on X

They’re small lights on dark days. The glimmers that remind me that joy still exists; there are still things to feel curious about, to anticipate, to delight in. That despite everything – the limits, the grief, the story seas – my story is far from over; the horizon still calls to me. And I’m still sailing toward it.

Norway on the Horizon

Just as I once stood in the shadows of castles and sang beneath museum lights, soon I’ll sit with a blanket draped around my shoulders, watching the Norwegian fjords drift past. Already, I hear the call of Norway summoning me. It’s a journey that I’ve etched into my calendar not just as a trip, but also as a promise. A promise that I can still find beauty in the world, even after all the dark, difficult days. I can already picture the majestic fjords rising from the mist, the hush of the water beneath the ship, and the quiet majesty of it all. I imagine myself there, wrapped in a blanket on the balcony, breathing in air that tastes of something new. It’s not about escaping my illness — I’ll carry it with me, as always — but it’s more about carving out space for wonder.

For two weeks, I won’t just be surviving, I’ll be living. I’ll watch waterfalls cascade down ancient cliffs and feel reminded of how much life I still have to live. The cruise isn’t just a destination — it’s my lighthouse. It’s my reminder that illness may take much, but not everything. That, despite the dark, monotonous days of pain, fatigue and all the rest, there is still room for joy and wonderment. 

"Hope is my lifeline. The thing that whispers 'not yet' when the weight of illness says 'give up'." Share on X

Toward the Light

Though the storms of chronic illness still rage, hope and chronic illness remain intertwined in my story. That light on the horizon reminds me that I’m still sailing – still living, still dreaming, still moving toward moments of joy.

"Chronic illness may take a lot, but it hasn’t taken everything. I’m still here — still living, still hoping." Share on X

What anchors you when the storm hits? What gives you something to look forward to?

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This Body Betrays Me is in large font at the top middle of the page. On the side of it reads Disability and Its Hidden Anger. The bottom shows a black and white photo of a woman sitting by a window with her arms clutching the top of her head
In Chronic Illness

Disability And Its Hidden Anger: This Body Betrays Me

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I live in a body that rarely feels like home. Though it belongs to me, it often acts like a stranger—an unwilling companion I never chose but must carry. I hold my breath, always bracing for the moment my symptoms strike and knock me off my feet. My legs give out without warning, sending me crashing to the ground. Even though I’ve learned to expect it – another consequence of living with a disability. I still feel a quiet, persistent anger rising inside me. It simmers beneath the surface, lurking in the silence where pain waits to flare. I don’t direct my anger outward; I turn it inward, toward the body I’m supposed to trust and call home.

"I hold my breath, always bracing for the moment my symptoms strike and knock me off my feet. My legs give out without warning, sending me crashing to the ground." Share on X
A simple design of a large quotation mark in pink at the top left-hand corner. The other quotation mark is at the bottom right, slightly larger but behind, so the colour is faded. In the middle reads 'I hold my breath, always bracing for the moment my symptoms will strike and knock me off my feet

Disability: My Body Is My Home – But I Don’t Feel Safe Here

My body is my home—my only permanent abode—yet I never feel safe inside it. They say the body is a temple, but mine feels more like a dilapidated house, one that is haunted by constant aches and unpredictable pain. My body moves in ways I can’t control—or it refuses to move at all. It aches quietly, collapses without warning, and spasms for no reason. It hides things from me, keeps its secrets, and exposes me in the worst ways. And it makes me vulnerable to injury, to misunderstanding, to judgment.

"My body is my home— yet I never feel safe inside it." Share on X "My body moves in ways I can't control—or it refuses to move at all. It aches quietly, collapses without warning, and spasms for no reason. It hides things from me, keeps its secrets, and exposes me in the worst ways." Share on X

Every time I stare into my mirror, I see evidence of my body’s fragility littered across my skin. As my eyes skim across every inch of my body, I notice the adornment of cuts and bruises, the inevitable fallout from the many falls and accidents from my disability.

"As my eyes skim across every inch of my body, I notice the adornment of cuts and bruises, the inevitable fallout from the many falls and accidents from my disability." Share on X

Each mark on my skin tells me I’ve lost the safety of trust and predictability—the quiet confidence that my body will respond, that my strength will endure. Instead, I am bracing. I am bracing for the next moment when my body will betray me. All too aware that it will do so again, again and again. I’ve had to endure moments when my legs gave out while crossing a street, when pain surged so violently I couldn’t speak, and when fatigue blanketed me so thickly I couldn’t lift my head. Each of these moments has only carved a chasmic crack in the already fragile foundation of my self-confidence. 

"I've had to endure moments when my legs gave out while crossing a street, when pain surged so violently I couldn't speak, and when fatigue blanketed me so thickly I couldn't lift my head." Share on X
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But I Can’t Be Angry: I Have To Paint A Smile And Perform

Yet, I feel I’m unable to give voice to this part of my life with a disability. All because society deems it inappropriate for the chronically ill and disabled to express anger. Instead, people expect me to feel grateful for the small things and the lessons that illness can teach, be inspirational, and smile. I often feel pressured to paint a smile, brush the pain aside and find the silver linings underneath the dirt that this disability refuses to let me forget.

"I often feel pressured to paint a smile, brush the pain aside and find the silver linings underneath the dirt that this disability refuses to let me forget." Share on X

When I do speak of my anger, people flinch. They want to hear a story of acceptance and peace, not the rage and discontent inside me. But I want both peace and acceptance; I fight for it, but my body won’t let me have it. 

On the bad days, I hear cries to put on my favourite cheery pop song that makes me smile and turn the volume up loud. But as much as I want the music to drown out the sadness and anger, it’s not what I want to hear. Sometimes, I don’t need bubblegum pop’s uplifting, happy, saccharine lyrics. What I want to hear is an angry, angsty rock anthem type to listen to and emulate, and permit me to wallow in the anger that my body is betraying me.

"What I want to hear is an angry, angsty rock anthem type to listen to and emulate, and permit me to wallow in the anger that my body is betraying me." Share on X

I carry anger like ARMOUR

A bitterness creeps in whenever I hear ‘You look fine’ or ‘Think positively.’ As if my disability is a mere inconvenience, a temporary setback that I can snap out of with a positive attitude. But if they looked deeper, they could see the invisible chains that bind me, the constant battle raging within. 

It’s not only the physical pain that fuels the anger but the isolation that accompanies it. The fear of explaining my condition, the exhaustion of constantly managing my pain, and the fear of being a burden to those around me weigh heavily on me every day. The anger is a shield, a way to protect myself from the well-meaning but often insensitive comments, the pitying glances, the constant need to justify my existence. 

"The anger is a shield, a way to protect myself from the well-meaning but often insensitive comments, the pitying glances, the constant need to justify my existence." Share on X

My body is betraying me. It promises me a good day and then pulls the rug from under me without warning. Yet, people speak of ‘listening to your body’ as if it’s a wise inner compass. Mine no longer feels like a strong, resilient body – it is fragile. I reject the beauty standards society taught me and recognise this form as real, twisted, bruised, slow, and silent. My body may be powerful in its own right, but that power is rarely under my control. 

"My body is betraying me. It promises me a good day, then pulls the rug from under me without warning." Share on X

I feel a silent anger and rage toward it. A deep, bitter anger rises when I’m alone or tired; when I’ve had to cancel plans for the third time that week, or when I miss out on things others take for granted. The anger feels all too real; it pulses in my chest and curls in my fists. It is a grieving kind of fury – a longing for a body I will never have and the freedoms I’ve never fully known. 

" It is a grieving kind of fury – a longing for a body I will never have and the freedoms I've never fully known." Share on X

I carry this anger as a reminder of the battles I fight every day Because of My Disability

But I refuse to cover the pain with gratitude to make it palatable for others. I won’t smother my anger with false positivity or disguise my grief with a smile. My anger is the echo of the weight I carry because of this disability; a reminder of the battles fought inside my skin every single day. 

"My anger is the echo of the weight I carry because of this disability; a reminder of the battles fought inside my skin every single day." Share on X

I’m learning to accept this rage, to mourn the body I wanted, and to grieve the trust my body has broken. This anger is not the opposite of acceptance—it’s part of the process. It’s the fire that keeps me moving, breathing, and surviving.

This body may not always feel like home, but it’s still mine. I will carry the pain and fury because both are real and deserve acknowledgement. 

"This body may not always feel like home, but it's still mine." Share on X
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