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I Still Want Adventure In The Great Wide Somewhere
In Chronic Illness

I (Still) Want Adventure In The Great Wide Somewhere

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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
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In Chronic Illness

The Lessons Learnt When Travelling

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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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