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Becoming Lost During a Flare Blog Post
In Chronic Illness

Becoming Lost During a Flare: Revisiting Acceptance

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During my recent foray into revisiting my old posts, I came across this post from five years ago.

In the post, I talk about the importance of acceptance when learning to live with a chronic illness.  It also made me reflect on my current decline in some of the symptoms I experience because of FND.

Once again, the trembling in the legs has worsened.

Significantly worsened in fact.

The Saga of Pain and Trembling Legs

Every day, my legs have felt incredibly unstable and weak, amidst the severe pain that already wracks them.  There is a persistent feeling of incredible stiffness and heaviness.  A heaviness that makes it feel like I am attempting to walk through thick mud.  But, juxtaposed with this heaviness and stiffness is an immeasurable weakness.

A weakness so severe that it continually feels if my legs are going to collapse from under me.

The trembling and this general weakness that exists within my lower limbs is not a new symptom.  So, you would think that I would be used to it by now.  But when confronted by worsening symptoms; they feel anything but familiar.  With worsening symptoms, we are once again thrust back into working through the cycle of grief.

"But when confronted by worsening symptoms; they feel anything but familiar.  With worsening symptoms, we are once again thrust back into working through the cycle of grief." Share on X
Directions of Grief
Five Stages of Grief – Denial, Anger, Bargaining, Depression and Acceptance via Shutterstock

Denial. Anger. Bargaining. Depression.  These are the key elements that we battle through alongside the fight we face with our symptoms before reaching acceptance.

"We need to battle through denial, anger, bargaining, and depression before reaching acceptance." Share on X

Accepting a ‘New Normal’

But, before we can arrive at acceptance, we must first deal with the psychological fallout that worsening symptoms create. Since the trembling has worsened, it has also significantly affected my mobility. Standing and walking is problematic as the shaking feels incredibly violent. Anxious that at any moment, I will collapse to the ground.  As a result, I have lost confidence, particularly when out of the house, the fear of having a fall never far from my mind.

It feels that I am drowning.  As though my days are about surviving rather than living. Every day I am tormented by symptoms beyond my control.

"My days are about surviving rather than living…tormented by symptoms beyond my control." Share on X

Symptoms are so severe that I am no longer able to function within the world around me.  People assure me of my bravery and resilience in the face of illness.  However, it’s during such flares that words such as bravery and resilience cease to have any meaning to me.

The Unpredictability and Isolation of a Chronic Life

Ask anyone living with a chronic illness, and they will tell you how unpredictable life can be.  Unpredictability is the very hallmark when living with a chronic condition.  Every day we wake up never knowing how the symptoms are going to impact the new day that awaits us.  When symptoms worsen, we never know whether it is due to deterioration in our condition, or just due to a flare.  And when symptoms do become worse, the fear that it is due to a decline becomes very real.  We already had to come to terms with a diagnosis and the new normal that comes with it.  And with worsening symptoms, we again need to adapt and find another new normal.

"When symptoms worsen, the fear that it is a decline with our health condition becomes very real." Share on X

The Effects the Physical Has On Our Mental Health

Furthermore, when symptoms do worsen, we can often isolate ourselves.  The isolation may be as a result of the symptoms themselves, or because of the emotional consequences, it has on our mental health.  I have recently had experiences of isolation.  Due to the severity of this recent trembling, it has affected every facet of my life, most notably my mobility. As a result, I have been unable and afraid to go out much, and when I do, I tend to go to familiar places; places where I know where I can quickly sit down if I feel they are going to collapse.

When living with such symptoms, especially when they are invisible, itself also causes isolation.  We often hide behind a mask; suppressing our pain and fatigue behind a smile.  The pain, fatigue, trembling, and dizziness does not manifest themselves physically.  No one can see or understand the torment that our bodies withstand.  And that can be incredibly lonely.

"No one can see or understand the torment that our bodies withstand. That can be incredibly lonely." Share on X

By not being truthful about the reality of our current situation, we begin to isolate ourselves further. Recently, I have become quite withdrawn, choosing to turn inward, becoming lost in a descending fog of hopelessness and despair.  Stress and feelings of sadness is a consequence of the physical toll that living with illness has on our bodies and minds.  Stress, however, can also exacerbate the symptoms, potentially causing a flare or making one much worse.

"By not being truthful about the true nature of our health we are further isolating ourselves." Share on X

Arriving at Acceptance

Reaching acceptance, although the journey is long and arduous, makes coping with chronic illness more manageable, arriving at acceptance, however, is difficult.

For many, it means resignation or giving up.

Acceptance instead is more about learning effective ways of coping with this new reality and quietening negative thoughts and feelings.

Acceptance and having a positive attitude isn’t a cure for chronic illness, but they can help make it easier to overcome the challenges and limitations that we may encounter.

"Acceptance and having a positive attitude isn't a cure for illness, but they can help make it easier to overcome the challenges and limitations that we may encounter." Share on X

One thing I have learned along the way, however, is that achieving acceptance is difficult.  When we think we’ve accepted everything about our illnesses, something happens such as worsening symptoms, and once again, we find ourselves back to the start.  Much like a revolving door, we often travel round and round the different stages until we locate the exit and reach acceptance.

Perhaps, when living with a chronic illness, there is no such thing as ‘complete’ acceptance.  If recent experience has taught me, coming to terms with a chronic illness involves a continuous journey between denial and acceptance, and so many other emotions.

"Coming to terms with chronic illness involves a continuous journey between denial and acceptance." Share on X
arriving at harbour after storm
Reaching acceptance can feel like arriving at a safe harbour after a storm

And as I now find myself amidst a torrential storm of pain and trembling, and days spent trying to survive the impending floods.

But, I hope soon that I once again find a safe harbour that is acceptance.

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Behind Closed Doors: Life With A Neurological Condition
In Chronic Illness

Behind Closed Doors: Life With A Neurological Condition

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In The Darkness & Behind Closed Doors

Life with a neurological condition is spent in the darkness.

We live with the symptoms behind closed doors.

Behind closed doors where no one can tell how much pain we are in, or the suffering caused by the many other symptoms that comprise our everyday life with chronic illness.  Our days are spent behind closed doors living with these symptoms.  When we do go out, we do so behind a mask.  A mask that consists of make-up to conceal the effects of living with illness every day.  Effects such as dark circles under the eyes and a general pale complexion that make us look ill.

We live with chronic illness in the darkness. We live with the symptoms behind closed doors. Share on X

But we don’t want to look ill; it’s more than enough to feel so every day as it is.  And so, we don our mask to conceal our ‘sick’ identity.  However, the masks we wear only often leads to suspicion from others who know us.  They are unable to fathom how we can still look ‘good’ and yet claim to be chronically ill.  Many believe we must be exaggerating our symptoms to gain sympathy and attention.

But we don't want to look ill; it's more than enough to feel so every day as it is.  And so, we don our mask to conceal our 'sick' identity. Share on X
woman holding hands over eyes
Often neurological conditions come with pain; pain that is can be constant and unrelenting

But they can’t see.  Nobody can see the destruction that living with constant and relentless symptoms has on our bodies and our ability to function in the world around us.

Life With A Neurological Condition: Pain Often A Constant Presence

This week, in particular, has been hard; the pain has been my alarm clock.  Today, for instance, I woke just before six o’clock, sleep interrupted by a wave of crippling pain in my legs.  Pain that feels like legs trapped in a vice that refuses to loosen. Pain has not only been disrupting my sleep but has also been keeping me up late into the night.  Nights where the pain has been my only companion.

But Pain Is Not Always The Source of Frustration and Despair

As a result of my diagnosis, it is not only pain that torments my legs.  I also endure stiffness and weakness in both of them.  As a result, it takes a considerable amount of energy to get out of bed.  Once I do; however, my legs give way, and I end up in a crumpled heap on my bedroom floor. Unable to do anything else, I manage to haul myself up back into bed.  In bed, I burrow beneath the warm duvet, which provides comfort and security from the cold, which only seems to aggravate the already horrendous pain. Incapable of doing anything else, I catch-up with the world I am currently unable to be a part of via social media, or watch funny videos on YouTube to in a bid to distract me from the pain and trembling that is ravaging my legs.

laptop in bed in the dark
The internet, social media such as YouTube can be a great distraction day or night when symptoms are at their worst

Eventually, usually after a couple of hours of resting, I can get out of bed and continue with my day.  Often, more often than I’d like to admit, I go without breakfast, my stomach protesting at the very thought of food due to nausea.  On days, I can manage to eat, I grab a breakfast bar, something quick and easy and requires no preparation.

Life With A Neurological Condition: The Invisibility

By looking at me you would not believe that anything was wrong with me, however, for me, it feels as though my legs are working overtime to be able to do everything that others take for granted. Taking a shower, getting dressed, doing household chores and preparing meals is extraordinarily challenging. The continual trembling of my legs, it can feel as if they are no longer strong enough to be able to support my body.

There are not enough words to adequately describe the weakness and fatigue I experience when continuously living with pain and trembling.  Everything is a struggle, and as such, forced to take breaks in between having a shower and getting dressed.  Or between chores that need doing around the house.  Just standing is problematic for me because of the continual trembling, feeling as if I’m attempting to balance on jelly. On the worst days, being able to achieve anything at all is exceptionally challenging.

With a body that can do very little, my day consists of resting on the sofa or my bed in my sanctum watching one of my many TV boxsets or an uplifting film on Netflix.

With a body that can do very little, my day consists of watching one of my many TV boxsets. Share on X

The scenario above is a small snapshot of a typical day.

Life With A Neurological Conditions: Days are Unpredictable

However, as anyone living with a neurological condition can attest, there is nothing typical about our days.

Our days are unpredictable; no two days are exactly alike…Things can change instantly. Share on X

Our days are unpredictable; no two days are exactly alike.  Even minute by minute, things can change instantly.  I can feel fine one minute, and suddenly I am lying on the floor after my legs unexpectedly give way.  Or a sudden bout of vertigo overwhelms everything, knocking me off balance. I found a quote from an old blog post, that resonated with me.  It reads “Life with a chronic illness can change instantly within a blink of an eye, one minute the symptoms are in the background, calm and peaceful…and the next they are wreaking havoc upon your body and impacting your life and routines.”

quote from blog crashing violent waves background

The Unknown Of Life With A Neurological Condition

The quote sufficiently describes life with a neurological condition.  Plans for going out or accepting invitations to weddings or other social gatherings are problematic to accept.  Why?  Because we are unable to check our diaries, unable to discern how we are going to feel on a particular day. Never knowing the state in which our bodies are going to be on a specific day.

One minute the symptoms are in the background calm and peaceful…the next they are wreaking havoc. Share on X

We are in a constant state of being stuck in the ‘unknown.’

The road ahead of us contains only a giant question mark.  Not knowing what lies ahead of us tomorrow, next week, next year or even further ahead in regards to our health.

Being chronically ill we are in a constant state of being stuck in the 'unknown'. Share on X

But unlike most people, we in the land of the sick learn to love every second, every minute, and every hour, of any of those good days because we know that the bad seconds, minutes, hours or days may be just around the corner.

As unpredictable as life with a neurological condition may be, however, our lives are still an adventure with infinite possibilities waiting for us to explore.

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How To Self-Care While On A ‘Deserted Island’

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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.

[Tweet “Self-care is the actions that contribute to the maintenance of health and well-being.”]

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.

[Tweet “Travelling with a chronic illness presents its own set of challenges regarding self-care.”]

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.

[Tweet “Knowing your limitations and needs make it easy to plan and find the holiday best suited to you.”]

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.

[Tweet “To prepare for your self-care needs, keep a log of your daily activities before leaving. “]

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.

[Tweet “Meditation apps are beneficial for settling the mind and reducing stress – and can be done anywhere!”]

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.

[Tweet “Pushing through symptoms so we don’t miss out is not smart and may exacerbate them further.”]

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.

[Tweet “To eliminate disappointment of missing out alternate your days between active days and rest days.”]

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.

[Tweet “Sleep is the best form of self-care there is!”]

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!

[Tweet “Allow some free days after returning from your travels to allow your body to recover.”]

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!

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I Still Want Adventure In The Great Wide Somewhere
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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
  • i still want adventure in the great wide somewhere cover
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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
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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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