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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.”
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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. 

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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. 

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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. 

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. 






















The first feeling I had as I stared at the confirmation email that landed in my inbox was excitement. I felt exhilarated at the prospect of escaping the gilded cage that illness had created for me. I was excited by the promise of a change of scenery from this gilded cage my home has become. But it also came with trepidation. Why? Because, unfortunately, I’m unable to escape my disabled body. I can’t take a holiday from this illness that controls much of my life. Instead, I have to make room and take them with me. Because wherever I am, the symptoms will be, too. Where I am is irrelevant; pain and all the other symptoms will exist no matter where I am. So how can I feel joy about travelling while I’m drowning in a torrent of pain and besieged by a myriad of other horrible symptoms?

"'I'm unable to escape my disabled body. I can't take a holiday from this illness that controls much of my life. Instead, I have to make room and take them with me." Share on X
Wherever I am the symptoms will be too

None of my days are symptom-free. Every day, I experience crushing waves of pain, weakness, fatigue or dizziness, waves that drag me deep into the abyss. Some days, I experience two or three severe symptoms; on the worst days, I come up against all of them. So, much of every day, I make decisions explicitly designed to avoid physical pain. I spend every day doing everything in my power to prevent triggering any of the symptoms that make my life increasingly oppressive.

"Much of every day, I make decisions explicitly designed to avoid physical pain. I spend every day doing everything in my power to prevent triggering any of the symptoms that make my life increasingly oppressive." Share on X

Glimmers that once sparked joy are now pushed into the shade.

So, I decline social invitations, cancel long-awaited plans and wave goodbye to passions and ambitions that once nourished my soul. But by doing so, I’ve paid a hefty toll. As the symptoms play a more prominent role in my life, my world becomes smaller and more isolated. The only company I seem to keep are the symptoms that forever haunt me. I often stare outside, wishing to be part of the world beyond my window. The glimmers that once sparked joy suddenly pushed into the shade, shrouded in darkness that light cannot reach. Because of this, I, like so many others living with a chronic illness, often experience depression, a byproduct of the happy, joyous moments that sickness has stolen from me.

"I often stare outside, wishing to be part of the world beyond my window. The glimmers that once sparked joy suddenly pushed into the shade, shrouded in darkness that light cannot reach." Share on X

So, saying yes to a marathon visit to bookstores, a trip to my favourite shopping haunt, a night out at the theatre, or a voyage on a cruise ship is a way of reclaiming some of the stolen joy illness snatches away. I do so despite knowing the heavy price to pay for these small snippets of normality: the rigidity and incandescent pain that rages through my legs, the all-consuming fatigue that overwhelms my entire body, and the dizziness and vertigo that refuses to relent, forcing me to lie down gripping at sheets as everything around me spins. I want good days and to feel alive rather than just surviving. So, I would opt to be in pain and feel the full force of my symptoms rather than be depressed.

"I want good days and to feel alive rather than just surviving. So, I would opt to feel pain and feel the full force of my symptoms rather than be depressed." Share on X

What ifs: to go or not to go?

But as the symptoms became more intense and severe, the anxiety about going at all increased. I didn’t want to go, only to have the cruise ruined by my erratic and unpredictable body. Was it even possible to postpone until I felt stronger and better prepared? Or at least until the symptoms were not so out of control and were no longer making my life a living nightmare.

I want good days and to feel alive rather tahn just surviving. I would rather opt to feel pain and the full force of my symptoms than be depressed

For me, a cure or getting better is a wish only a Fairy Godmother could grant. But my life is no fairytale. It might not even be a flare, but the start of my symptoms worsening again. Right now, it might be the best it gets. Whatever the case, I cannot put my life or plans on hold, however much I would like to.

My mind constantly raced with thoughts of what if—catastrophic thoughts of what would happen if I did go and thoughts of what if I didn’t. But ‘what’ and ‘if’ are as nonthreatening and insipid as two words can be. But together, side-by-side, they have the power to haunt you with anxiety or regrets. As much as I feared going, I also feared that I would always regret it if I didn’t go. As unwell and anxious as I felt, what if I had gone would forever haunt me.

My most treasured memories were not pain or symptom-free

But I did it. After a whole lot of tears, anxiety attacks, as well as pep talks and words of encouragement, I did it. Despite feeling weak, defeated and broken by both my physical symptoms and mental health, I amazed myself by achieving what I thought was unthinkable – stepping on board, passport in hand, ready to cruise.

Reflecting on this cruise and those preceding it made me realise something. Some of the best experiences and my happiest memories were not pain— or symptom-free.

".Some of the best experiences and my happiest memories were not pain— or symptom-free." Share on X

The pain and other symptoms, as severe as they were, are not what I remember most from the trips I’ve loved while cruising. What I remember most is being in awe of the majestic scenery as I stood in the fjords of Norway. I look back now on not the amount of pain I was in but standing on a ferry, witnessing the beauty and quaintness of Portofino as it came into view. Only the joy and excitement of seeing a pod of dolphins as they jumped alongside the ship remain, not the days spent feeling sick in the cabin. What I remember is not the crushing fatigue but walking the pretty streets of Sorrento. I dwell on not the nights spent in the cabin in pain but the lovely, joyful memories of nights eating fantastic food and sipping delicious cocktails.

Symptoms lingered, but joy lingered, too.

I look at pictures of myself while travelling, and I’m glowing—beaming in a way I haven’t seen myself in a long time. For the first time in a long time, it felt like I was living and not just existing. Illness and its vast array of symptoms have long ago created a gilded cage, and for me, books were its key. Reading allows me to escape the cage and experience worlds and places, both real and imagined. But as I stood on the balcony, watching the glistening blue waves of the ocean, my world no longer felt small and secular. My world suddenly expanded, and I was a part of it, experiencing it for myself instead of observing it from a tower, like Rapunzel or reading about it from a book.

"'But as I stood on the balcony, watching the glistening blue waves of the ocean, my world no longer felt small and secular. My world suddenly expanded, and I was a part of it, experiencing it for myself." Share on X "I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain." Share on X

But all good things must come to an end. But, for each excursion and every accomplishment came a physical cost. I swallowed the maximum dose of painkillers while crossing my fingers that it would delay the inevitable assault of pain. I diligently took the correct dose of my other pills and hoped they would ease the nausea and dizziness advancing toward me. But, living with a chronic illness, I often have to prepare to worsen my symptoms for a slice of normality. I must pay the price to take part in everyday things everybody else takes for granted. But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too – almost making the pain worth it.

"But even sometime later, symptoms lingered, pushing my body into a debilitating flare. But joy and exhilaration lingered, too." Share on X

WHAT IS SELF-CARE?

Self-care refers to the actions and attitudes which contribute to the maintenance of well-being and health of the individual.

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When living with a chronic illness, this includes taking prescribed medications, regularly exercising, eating healthily and attending appointments with your doctor.

As equally important is to maintain positive emotional health and well-being.  For me, what has helped cultivate a positive attitude is the development of a positivity board.

This positivity board consists of positive and inspiring quotes and favourite photographs.  And anything else which helps me remain positive and content despite the effects that living with a neurological disorder has on my life.  I have also made myself a comfort box.  A box containing items that bring me comfort and support when symptoms are remarkably severe.  By keeping this box next to my bed provides me the opportunity to self-care when I am unable to get out of bed.

How to Self-Care When Travelling With a Chronic Illness

However, how can we still participate in self-care when stuck on a deserted island.  I don’t mean a literal deserted island, but rather how can we take care of ourselves when away from our daily routines and everything else that provides comfort and safety while living with a chronic illness.

One such example is travelling.

Travelling when living with a chronic illness presents its own set of challenges regarding self-care. Being away from our usual routine and everyday life is difficult.

It’s this change and not knowing what to expect that can make it difficult when travelling with a chronic illness. It’s this change and not knowing what to expect which makes it’s difficult to anticipate, plan and manage our symptoms.  In my experience after four cruises, self-care can often be more difficult when on this type of holiday as when we begin to feel unwell we cannot just pop to the nearest store for the items which can help ease whichever symptoms decide to grace us with their presence. Which means, careful and considered packing before we leave on our adventures.

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Go On An Adventure

So, how can we practice self-care while we are away?  How can we ensure that we enjoy our relaxing time away and not let our symptoms get in the way of having a good time?

BEFORE LEAVING

The first piece I would give to anyone wanting to travel while living with a chronic illness is to accept yourself for who you are today.  Recognise and accept the limitations that now exist, and assess your particular needs. Once you know them, then you can start planning around your new roadblocks to find a location and type of holiday that is best suited to your particular needs. For example, if you are planning a city break and you have difficulties with mobility then perhaps find a hotel located near the sights that you want to visit during your stay.

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I recently read an excellent article about travelling with a chronic illness. It recommended that before starting to pack is to keep a log of your daily activities to better prepare for your needs while away.  Note things like medications, equipment, and anything else that you might need to help look after yourself while away and especially if and when a flare in your symptoms occurs.  It might also be an idea to start packing a few weeks before your departure; this year, I admit I left some things until the last minute, and the packing left me feeling weak and fatigued.

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And find the space to pack your essential self-care items such as books and magazines, a favourite pillow or cushion that you find comfortable if pain is an issue for example.  When I am in a lot of pain, I often find distraction the best way to cope, taking my mind away from the source of my discomfort with something such as a funny and heart-warming film.  As such, I always ensure that I pack my iPad loaded with my current favourite films and TV shows (with headphones as not to disturb my travel companions; useful when pain wakes you up in the middle of the night).  It can also be helpful on days confined to bed because of a sudden flare in the severity of the symptoms to entertain one’s self when everyone else is out enjoying their time in a new country.

smartphone entertainment and travelling

Hydration is also essential, even those not living with a chronic illness. Make sure to carry a water bottle and snacks in your carry-on luggage in case of delays in the airport.  Dehydration and exposure to the sun both can exacerbate fatigue. To avoid this, drink plenty and limit your time in the sun.

Meditation is also very useful in helping ease the burden of symptoms when they are a nuisance.  There are plenty of apps available for smartphones or tablets that focus on meditation and mindfulness.  The exercises can be done anywhere – even busy airports and they are excellent at settling the mind and reduce stress.  If you find travel difficult and stressful, then perhaps investing in an app like this might be beneficial.

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DURING THE HOLIDAY

When sampling a new country, we want to do and see everything it has to offer.  We want to push through symptoms like pain, so we don’t miss out on anything.  But by doing so may not be the smartest move as it may exacerbate then even more.  So take a break.  Perhaps limit your activity to only doing one fun thing a day, giving you the opportunity to rest for the remainder of the day.

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If planning energy-consuming activities alternate your days.  For example, have an active day followed by a day of rest.  Doing this will allow your body time to recover and eliminate the stress and disappointment of potentially missing activities.

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Travel is good for the soul

And this doesn’t have to mean lying in your room while everyone else is having fun.  Book a spa day as an alternative.  Or treat yourself to a day next to the pool with a good book.

During my recent time away, I experienced a day filled with excruciating pain.  Instead of wallowing in self-pity and misery I phoned my best friend as a distraction from the pain.  I found this useful and made my day brighter.  Perhaps you can think about having your person standby in case you need them.

But perhaps the most beneficial part of self-care for anyone is sleep! So try and get a good night’s sleep and nap whenever you feel like you need it. Sleep is perhaps the best form of self-care there is.

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COMING HOME

In my experience, travelling can be extremely taxing.  Take a few free days to allow yourself to settle back into your routine and allow your body to recover. Spend the time to pamper yourself and catch up on your favourite TV programmes. Or reminisce while flicking through your photographs from your incredible trip.

Oh, and plenty of sleep, trust me your body will thank you for it!

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And most of all – congratulate yourself! You made it outside of your safe comfort zone. Not allowing the baggage that you carry because of chronic illness from stopping you from seeing the world.  And no letting chronic illness rob you of the excitement and enjoyment that travel offers!

As Illness Becomes Permanent the Person We Once Were Fades Into Oblivion

Anyone living with a chronic illness is all too aware of the constant impact that comes from the day to day persistence of symptoms such as chronic pain, and fatigue can have, as we watch the person we once were fade into oblivion. Symptoms that first started as mild, seemingly benign, suddenly become invariable. Their presence, not a result of a brief illness but a permanent and life-changing condition. Over time, these symptoms take over our body and mind. The purest pleasures that we once so enjoyed suddenly becomes unattainable. Once something like going on holiday was pleasurable and now invoked anxieties when travelling.

Perhaps it was different for me. The neurological condition that I eventually diagnosed with is as a result of a problem that arose during my birth. As such has left its permanent scar on my life since. Although the symptoms were at first insignificant have become progressively worse since.  As such, I have never been an adventurous or outdoor person. Sports, for example, has never been my thing, proving myself to be more of a clumsy and uncoordinated person. Growing up, and struggling to fit in with others, I was quite happy to stay at home, tucked away in my bedroom to read or watch a favourite film.

Preferring the Safety of the Familiar

Even when I ventured on my own to attend university away from home, I eventually returned after several weeks. I found myself unable to cope away from the comfort and safety of familiar surroundings while navigating mysterious and unexplainable symptoms. Although never a strong passion of mine, I always enjoyed travelling. Whether it be visiting other parts of the UK or soaking up different cultures abroad.

However, as time passed, these symptoms grew in intensity. The culmination of which was preventing me from living life. Anxiety, pain, fatigue, and vertigo were taking over my every day, slowing becoming my new normal.  Endless trips to see consultants and specialists proved fruitless.  Until the diagnosis of a neurological disorder. A burden that I must now carry with me wherever I go.

Were my days of travelling finished?

When the symptoms began to deteriorate, I thought the days of travelling was over.  Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent.  My world had become limited, whereas the symptoms became more pronounced and took a more significant part of my life.

"Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent. " Share on X
quote life begins at the end of your comfort zone

Life Begins at the End of Our Comfort Zones

But there came a time when I wanted to see more of the world.  Thanks to funding from our local authority, I was able to employ a carer to take me out for a few hours a week. As I  began to visit new places and learned to push through the effects of such debilitating symptoms, my confidence increased. It was only then I  decided to go on holiday for the first time in I can’t remember how long.  Due to the severity of the dizziness, vertigo and perceptual difficulties that come along with them, we decided to try a cruise to avoid the long waiting in an airport terminal.

Lessons Learned From Cruising

Last month, I returned from my fourth cruise.  And ever since, I’ve come to reflect on my experiences of travelling while living with a long-term health condition.  Before the trip, I had been experiencing increasing neuropathic pain in the legs. The excruciating pain often had me sobbing with the intensity of the torment it inflicts. Pain so severe it even made me physically sick as a result. It, unfortunately, continued throughout the cruise. The pain forced me to submit to the painkillers, prescribed to me in case of such debilitating pain. It, however, only added to nausea I was already experiencing due to the motion of the ship.

Where we are is irrelevant; pain is pain. It will be there no matter where we are

But it made me realise, that location is irrelevant.

Pain is pain.

Symptoms are symptoms.

"Where we are is irrelevant. Pain is pain. Symptoms are symptoms. They will be there no matter where we are." Share on X

They are going to occur no matter where we are. Being crippled, writhing in pain, crouched over the toilet at home is no different from being debilitated by pain in the cabin of a cruise ship.  Yes, it’s easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when on the move.  It just requires careful planning, packing essential items that will help manage symptoms when they do occur.

"Yes, it's easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when travelling. It just requires careful planning." Share on X

As this realisation became reaffirmed after each trip I took, it became easier to depart on further cruises.  As flares occurred before a trip, however, inevitable doubts crept in. Doubts which questioned whether I could cope with travel while enduring such severe symptoms. But as the holiday was already fully paid for, as Queen once sang “The Show Must Go On.”

Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed.

"Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed." Share on X

For the Love of Cruising

I know that places with high ceilings trigger severe episodes of vertigo, hence why cruising has become so appealing.  The trembling of my legs and the lack of warning before they give way means that I am unable to walk far. As such I have particularly enjoyed the Norwegian Fjords as many of these ports are within the towns themselves and they tend to be easy to navigate by yourself.  Also, cruise companies offer some lovely excursions and all itineraries details the total length of the tour and how much activity (like walking) there is so that you can choose one best suited to you and your particular needs.

"For successful travel, we need to evaluate our limits and adapt our plans accordingly." Share on X

As chronic pain is a constant companion of mine, before our cruise, we’d booked a trip to the incredible Blue Lagoon in Iceland. The warm mineral water helps melt away pain and stiffness.  And it worked!  The whole time we were in the beautiful blue water, my pain levels markedly decreased.  We booked a couple of other trips in several of the other ports on the itinerary. All under four hours and had minimal walking involved but still allowed me to appreciate the fantastic sights that Norway and Iceland offers.

The luscious and relaxing water of the Blue Lagoon in Reykjavik, Iceland

The Anxiety of Being Outside Our Comfort Zone

Before a trip, of course, the monster that is anxiety rears its ugly head. I begin to question whether I am strong enough to cope with constant and debilitating symptoms while travelling.  However, I have survived and at times even thrived even while away from the safe and familiar. Although there were difficult times, I got through them.  I even became stronger and resilient as a result.  I since, have been able to reassure myself with the mantra “You can do this.  You’ve been through worse, and got through things you thought you couldn’t but did.”

"Despite the difficult times, travelling has helped me become stronger and more resilient." Share on X

You become resilient when the intense swelling of the sea, constantly upsets your sense of balance, making it difficult to walk. And you become resilient when crippled with severe pain that feels as if it will never end.  You’re resilient for enduring continuous and unrelenting symptoms and still getting up and enjoying all a holiday has to offer.

The Great Unpredictability of Illness is Much Like The Great Unpredictability of the Weather

This year, reminded me of the great unpredictability of the weather. Unfortunately, high winds prevented the ship from docking in two of the ports scheduled on our trip.

It told me that like the weather the symptoms of chronic illness is also unpredictable.  But as it reminded me, unpredictability doesn’t have to ruin fun or enjoyment of plans; it just means finding ways around the restrictions like the weather or our symptoms.

As much as travelling can be stressful, and that anxiety will be a part of future travel plans, I pledge not to let that stop me. I believe that travel is something that has me happier, stronger and more resilient.  Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere.

"Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere." Share on X
belle quote beauty and the beast adventure in the great wide somewhere
A post about why I crave travel and adventure despite living with constant and often debilitating symptoms of a neurological disorder

Sheryl, as well as sharing her own stories about living with a chronic illness, is a great support to other bloggers and writers.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts.  I’ve decided to take part in this month’s Link Up Party, using the prompts to help others gain insight into travelling when living with a neurological disorder.

Travel and visiting new destinations is one of the great joys of life.

Whether it be for a few days or several weeks, travel allows us to escape our lives, allowing the pursuit that of which is important to us. Or the freedom to seek out activities that we have always wanted to try but never found time to accomplish.

Living with a neurological condition, however, can make travel exceptionally difficult.  Living with constant and unrelenting symptoms, especially those which can be unpredictable, can often force you into a bubble; a little prison where we’re happiest in the safe and familiar surroundings of home.  Home is secure, like a security blanket. Although the symptoms are incredibly unpleasant, it is easier to endure behind the closed doors of our homes. It’s safe, but it’s not living, is it?

"Our symptoms are often easier to endure when at home amongst the comfort and familiarity of home." Share on X

If we are to endure the persistent and tenacious symptoms everywhere, then why not do so amidst the unknown and breathtaking scenery of foreign lands.

We are sick, and thus can be ill anywhere, so why not travel?

If I am to be sick, then I can be sick anywhere.

That’s why I decided to step outside the comfort zone of my familiar surroundings.  I chose to live.  To live with the symptoms of this neurological condition instead of merely enduring them.

We have found cruising the most accessible and enjoyable way of travelling while in the company of a neurological disorder. And so a love of cruising began.

[Tweet “I have found the cruising offers the most accessible and enjoyable way of travelling.”]

cruise ship anthem of the seas docked
Anthem of the Seas

That is not to say, that it has become any straightforward, however.  There is always some anxiety and trepidation before embarking on our travels.  The fear of the unknown; the unknown of when we will experience a severe flare in our symptoms.  The uncertainty of whether we will manage to leave our hotel room. The fear that pain and other symptoms will dictate our travels just as it does every day while at home.

Currently, I have been experiencing a severe chronic pain flare.  So intense, that I have found myself crippled on the floor of my bathroom, retching with the intensity of it. So the worry of travelling while amid such crippling pain began.

Lesson Learnt When Travelling: My Strength and Resilience Despite Illness

However, I realised that to defeat this recent attack of chronic pain and the accompanying anxiety; I need to look back and remember the previous times I have been on a cruise. And need reminding of the coping techniques that helped me endure chronic pain, and the other problematic symptoms while being in uncertain and unfamiliar surroundings.

This year marks my fourth cruise. By looking back to my past adventures at sea, I can identify what helped manage and control my symptoms before so that I can put these same arrangements in place.  Already, this has involved an appointment with my GP for a prescription for strong painkillers to manage the chronic pain while away from home and motion sickness tablets. Not only do they help ease nausea caused by sea-sickness, but they can also help reduce the severity of the dizziness and attacks of vertigo that I frequently experience.  And with chronic pain comes painsomnia and so I have bought lavender and chamomile pillow spray to help me sleep.

"By reminding myself of the strategies that helped manage my symptoms, I can put these in place again."] Share on X
feather down lavender and chamomile pillow spray
Lavender is one of my favourite essential oils to help me sleep when I’m experiencing the dreaded painsomnia

Lesson Learnt When Travelling: The Power of Pacing!

When living with a chronic illness, one of the critical techniques in our self-management toolbox is pacing.  Chronic illness affects our energy levels, and thus we only have limited battery life. By learning how to space out activities, we can learn to stay within the limits of what our bodies can handle without exacerbating our symptoms. Or before running out of battery life altogether.

Pacing, therefore, is an essential coping technique when on holiday. And away from our daily routines and behaviours, especially as many holiday activities may deplete our already exhausted battery levels.  Jennifer, from The Health Sessions, recommends for every active-day we follow this with one day of rest. Doing so allows our bodies to recover between energy-consuming activities. When on a cruise, however, pacing can be awkward as we are not in control of the itinerary.  It is crucial that we are mindful of our limitations and not to exceed them, spoiling the remainder of our relaxing time away.

"For every active day follow this with one day of rest to help manage our energy." Share on X
battery life low mobile phone
With fatigue being a common symptom of chronic illness, it means that we only have limited battery life and one which gets depleted quickly if we don’t pace ourselves

Lesson Learnt When Travelling: The Need For Surrendering to Symptoms

As much as pacing can help manage our symptoms, however, we are more than likely will still experience flares.  If so, we need more than ever to surrender and take care of ourselves. Yes, even if it does mean missing out on specific events and activities that our holidays may have on offer.  I know from experience that this can be difficult, and we tend to criticise ourselves for missing out. Instead, we should be congratulating ourselves for even managing to get away from the security of home. And for not letting chronic illness make a prisoner of our own lives.

Travelling with chronic illness can sometimes mean surrendering to it; finding ways to make whatever we’d like to do on holiday manageable for ourselves and our weak bodies.

"It is important to find ways to make whatever we like to do on holiday manageable for ourselves."] Share on X

Lesson Learnt When Travelling: To Go With The Flow

Travelling with chronic illness also means learning to go with the flow.

Change and not knowing what to expect can be difficult when living with a chronic illness because it’s the not knowing what to expect that makes it much harder to anticipate, plan and manage our symptoms.  Therefore, perhaps not making concrete plans may be of some use when on holiday and instead take part in the activities and events on offer when we know we can enjoy them.

"Not knowing what to expect makes it harder to anticipate, plan and manage our symptoms." Share on X

Travelling Helps To Improve Ourselves

It may sound that travelling while living with a neurological disorder is more trouble than it’s worth.  In my mind, however, and despite all of the problems, it isn’t.  Travelling offers the opportunity for us to improve ourselves.  Whenever we venture outside our comfort zones and visit places we’ve never been before our world expands and our eyes open to new possibilities like never before.  Travel, especially when living with a life-long condition allows for us to learn things about ourselves, our needs and capabilities that we may never have known otherwise.

In my four years of cruising, I have learned that the more I do so, it also improves my aptitude of being away from home, despite how uncomfortable it can make me.

Chronic illness can rob us of many things, but we should not let it rob us the enjoyment and excitement of new adventures.

"Chronic illness should not rob us of the enjoyment and excitement of new adventures." Share on X
Link Up Party with A Chronic Voice: Lessons Learnt When Travelling
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