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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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Mystery Blogger Award
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The Mystery Blogger Award

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Thank you so much to Tasha M. from Pain Warrior Code for nominating me for the Mystery Blogger Award!  I am so honoured and such an admirer of her blog for the uplifting positivity and inspiration for those battling with chronic pain every day.

What is Mystery Blogger Award? 

“This is an award for amazing bloggers with indigenous posts.  Their blog not only captivates; it inspires and motivates.  They are one of the best out there, and they deserve every recognition they get.  This award is also for bloggers who find fun and inspiration in blogging and they do it with so much love and passion.” – Okoto Enigma

Mystery Blogger Award

Rules

  • Thank whoever nominated you and include a link to their blog
  • Tell your readers 3 things about yourself
  • Nominate 10-20 bloggers you feel deserve the award
  • Answer the questions from the person who nominated you
  • Ask your nominees 5 questions of your choice with one weird or funny one
  • Notify your nominees by commenting on their blog

3 Things About Myself 

  1. I am such a big fan of crime dramas and watch so much of this particular genre!  I was especially a huge fan of the British crime drama Wire in the Blood (and inspired by the brilliant Tony Hill novels by Val McDermid) that it was one of the reasons why I wanted to study Psychology at university!
  2. I gained a BSc (2:1) in Psychology and wanted to study further, specialising in Clinical Psychology but unfortunately was unable to because of health problems
  3. My favourite form of ultimate self-care is a trip to a spa.  It may not always help ease the persistent symptoms that affect my body, but still, find the peace and tranquillity of a spa incredibly relaxing that it’s hard not to come away feeling better than when you first walked in.

My nominees for this award are; 

Answers to Questions from Pain Warrior Code:

  1. What made you want to start blogging? I wanted an outlet for my frustration that the symptoms caused by my condition affect me, but more than that I also wanted to educate and raise awareness of neurological disorders as well as invisible illnesses in general.
  2. As this award is about blogs that inspire and motivates – do you as a nominee have a mantra, proverb or saying that you live by? I’ve shared this before, but I adore a quote from one of my favourite authors, Louisa May Alcott, “I am not afraid of storms for I’m learning how to sail my ship.”  It just reminds me that the hardships that my condition creates only help to deepen the strength and resilience that I will need tomorrow and for any future storms that life with a neurological condition causes to be.
  3. If you had to choose one meal that you had to eat every day for a month (without any health complications), what would it be?  Tough one, there are so many meals that I love, even though I may not always feel up to eating, but I am partial to a pizza! My favourite is one topped with mozzarella and basil pesto! Delicious!
  4. What is your favourite hobby/pastime? It has to be reading, as someone living with constant pain as well as other unpleasant symptoms, I love the escapism that reading a novel provides, escaping to other countries, or other times!  In my imagination, I can do anything and go anywhere that I choose; freedom that living with illness impedes.
  5. What’s the best/worst practical joke that you’ve played on someone or that was played on you? Genuinely cannot think of anything that has happened to me or tricks that I’ve played on others.  Although I am incredibly jumpy and so hate when people jump out unexpectedly!

My questions for my nominees: 

  1. If you were stuck on a deserted island but could have any 3 books with you, which books would you pick?
  2. What are your favourite song lyrics? Why?
  3. What TV show are you currently binge-watching, or the last show you binge-watched? Would you recommend it?
  4. If you could travel back in time to any point in history, where you would choose to visit?
  5. Imagine if you had to become a dog, which breed of dog would you be and why?
I look forward to hearing your answers!
Congratulations all!
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In Chronic Illness

What if our imperfections are just gold-filled cracks?

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A few weeks ago I was contacted by a friend about an exciting community project in Cornwall entitled ‘We Are Enough; The Creative Yarn Bomb of Love.’  Its ethos is to raise awareness about mental health; to bring people together to share experiences and encourage self-expression through creativity.  All forms of creativity are encouraged such as knitting, crocheting, writing, painting or photography while also spreading positivity and kindness.  A project to help people who may lack self-worth to know that we are all good enough just as we are.

The project will culminate in May 2019 to coincide with World Mental Health Day with a massive yarn bombing, whereby spaces across Cornwall, its structures and objects will be transformed, covered with decorative knitted and crocheted material to promote and raise awareness about mental health. You can click here to find out more about the We Are Enough project.

My friend asked if I somehow wanted to get involved in the We Are Enough and I, of course, said yes.  It is a brilliant project, and I know so many people who have had experience of not feeling good enough and plagued with self-doubt and suffering low self-esteem as a result.  Due to poor manual dexterity due to the Functional Neurological Disorder I suffer from, I am unable to crochet and knit, so I thought instead I would put pen to paper (or fingers to keyboard) and share my own experiences of not feeling good enough…

I suppose I have had the feeling of not being good enough for a long time now; for far too long that I am no longer able to remember exactly when these negative self-beliefs began.

These beliefs became more evident when the symptoms become a more significant part of my life, mainly the dizziness and the problems they caused with being able to handle being in certain places such as buildings with high ceilings, for example.  I hated these symptoms and the limitations they placed in my life, being able to enjoy an outing to the cinema became increasingly difficult due to the severity of the dizziness and vertigo.  I didn’t hate these symptoms (and later the neurological condition) just because of the limitations, but also how these set me apart from everyone else.

[Tweet “I not only hate the limitations, but also how the symptoms set me apart from everyone else.”]

Being different and standing out from everyone else can be very lonely and isolating
Standing out from everyone else can be incredibly lonely and isolating…very often leading to feeling not good enough

These symptoms began in early childhood and stayed with me throughout my adolescence and beyond.  A time when any differences that set us apart from everyone else are more apparent, especially to those within our peer groups.  And unfortunately, these differences can lead to bullying and ostracisation, which is what I frequently experienced throughout my school years, especially during secondary school.

In my experience, it is one thing to think negative and demeaning judgments about yourself, but to hear them from other people only reinforces these beliefs and are once again enforced on this perceptual cycle of not feeling good enough. And every time we are ignored or not given an invitation on the latest night out, or party once again reinforces to ourselves that we are not good enough.  And as this perceptual cycle repeats, again and again, it is no longer a belief, but becomes our truth.

[Tweet “Continuously hearing negative judgements about yourself enforces the belief we are not good enough.”]

We can feel defined by our imperfections, whether they may be physical imperfections such as scars, or a perceived character flaw or like me, suffering from a medical condition that makes you different.  So much so, that we are unable to recognise the positive attributes that make us stand out, and unique to those who love us unconditionally.  In the past, I’ve gone on numerous courses, many of which worked on increasing self-confidence and self-esteem and part of this was to write a list of what we liked about ourselves.  Asking other people who are close to me, they could list many things that they liked about me. However, I struggled to come with one single item on the blank piece of paper.

Even now at age 32, those feelings of not being good enough has followed me through those turbulent years of adolescence and into adulthood.  At university, much like my school days, I lacked confidence, continually doubting my abilities, never satisfied that my latest essay was ever good enough, or convincing myself that I failed the exam I just came out of, although I never had any evidence to support these assumptions.

In today’s society, we are taught the value of being productive, and as such as someone living with a long-term neurological condition and unable to work once again reinforces this belief that I am not good enough, somehow unworthy of having beautiful things or the opportunity of good things happening to me.

I am imperfect, and the condition that is now a constant part of my daily life is somehow my most significant imperfection.   An imperfection that has caused significant cracks, and weakening every part of my life.  But, have you heard of the term Kintsugi?  Well, kintsugi is the Japanese art of repairing broken pottery.  Broken objects, such as pottery are often repaired with gold.  These imperfections or flaws are seen as a unique piece of the object’s history and which adds to its beauty.

kitsungi an art form that turns brokeness into beauty
The Japanese art form known as kintsugi turns brokenness into beauty

Beautiful isn’t it?  But why do we not see imperfections and flaws ourselves in the same way – as something as unique and adds to our beauty instead of something to be ashamed of, doing our best to hide them from others.  To see something that sets us apart as something to celebrate and be proud.  Yes, the symptoms of the neurological condition that I live with may make doing some activities such as going to the cinema as difficult but isn’t it the fact that I have refused to let it stop me from doing certain things that is a sign of my strength and what should be celebrated?

[Tweet “Perfection is a social construct and not a reality; no one is perfect.”]

The fact is that perfection is a social construct and not a reality; no one is perfect. We all have flaws and imperfections whether they may be real or imagined, but what does matter is what we believe about them.  We can tend to give these flaws with more power and importance than they warrant, believing that our imperfections somehow makes us less whole.  Less worthy. But in truth, we are all good enough just as we are.  And our flaws and imperfections are gold-filled cracks that make us unique and adds to our beauty, and not which diminishes our light within.

[Tweet “We believe that our imperfections somehow makes us less whole. Less worthy.”]

Remember, you are good enough just as you are.

To find out how you can get involved in the We Are Enough project from your own home too, go to QuietConnections.co.uk/We-Are-Enough/

[Tweet “In truth, we are all good enough just as we are.”]

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In Chronic Illness

The Three Day Quote Challenge: Day 3

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Thank you again to Robert (A 30 Minute Life) and Jen (Tripping Through Treacle) for nominating me for this incredibly uplifting and inspiring quote challenge! The written word has the power to uplift and inspire, and can help us to remain resilient during the darkest times. This challenge is a perfect chance to remind me of so many of the beautiful quotes that can help to turn on the light when times are darkest.

The rules of this challenge are as follows:

  • Thank the person who nominated you
  • Post a quote for 3 consecutive days (1 quote for each day)
  • Share why this quote appeals to you
  • Nominate 3 different bloggers for each day

And the final quote for this challenge is:

[Tweet “Everyday may not be good, but there’s something good in every day”]

The quote again is one of my favourites and one I am continually reminding myself of, on the many rough days that I experience because of chronic illness and chronic pain, the two constant companions in my life.  On these dreadful days, days where we are unable to see the light at the end of the tunnel, it is easy to forget the many pleasant things that make up our life away from constant illness and pain.

At the end of these crummy days, it is so easy just to write off this day as terrible but in my experience, our days are never just wholly bad or good.  There is always something to be thankful, every day there is something good, as small as it may be, in every single day, no matter how horrendous we may have felt.

That is why the above quote appeals to me and is vital in my everyday life; it makes me appreciate the small, amazing moments in my life amidst even the bad.

My nominees for today are:

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