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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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A Spoonie Norwegian Adventure

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At the end of May came the time that my parents and I have been looking forward to – our annual cruise.  And this year, I have been particularly excited as this year we booked a cruise around the beautiful scenery of the Norwegian Fjords.

As the symptoms associated with my neurological condition had worsened somewhat over the past few months, it did incite some anxiety.  However, after the successful trip to Hay-On-Wye the week before our departure did lessen this somewhat; in fact, I almost felt like Stella after getting her groove back!

The excitement for the trip returned, and the Queen hit ‘Don’t Stop Me Now’ became my new anthem as I had an unfathomable determination that nothing was going to stop me from enjoying this much-anticipated cruise, not even pesky symptoms such as trembling legs.

Time to be monkeying around! (one of our amazing towel animals during our stay created by our lovely state room attendant
Time to be monkeying around! (one of our fantastic towel animals during our stay created by our lovely state-room attendant

Of course, as much as a holiday is a brief escape from the realities of our everyday life, and our enduring physical surroundings, there is no break however when living with a long-term health condition however and all of its accompanying symptoms.

[Tweet “As much as a holiday is a brief escape from our lives, there is no break from chronic illness.”]

There were many times during the cruise that I was overwhelmed by the painful sensations flowing throughout my legs, as well as fatigue dragging me under into its grasps.  As a result, I ended up crashing in our cabin after dinner; curled up in bed in comfortable pyjamas and binge-watching a comforting television programme via Netflix.

And one of the many reasons why I love to cruise is that sleep is much more straightforward to come by then when I’m at home, consumed by chronic pain, with the gentle (sometimes not so gentle) rocking of the ship.

Our cabin on Navigator of the Seas
The view from our room!

At first, there was the inevitable FOMO (fear of missing out) on all the evening entertainment on offer (as well as the embarrassment of knowing that there were young children out longer than myself!).  I  could push through the fatigue, pain and other symptoms to stay on and party through the night.   Then, however, I inevitably will end up missing out on more by being too unwell enough to venture off the ship and explore the beauty of Norway for myself (although granted I was able to enjoy some of the stunning scenery from our cabin with its panoramic ocean view).

[Tweet “I could push through to party throughout the night… but then I would miss out the next day.”]

Also bearing in mind, however, that one of the significant benefits of cruising, especially with Royal Caribbean is that some of its entertainment can be enjoyed from the comfort of your cabin through its broadcasting channel on the TV.  So, I wasn’t always even missing out on the fun, and best of all I could do it in the comfort of my PJ’s!

Every spoonie’s dream!

I did manage to take in one show during our week long-stay on Navigator of the Seas; the ice-show with fantastic ice dancers, which I thoroughly enjoyed.  The flashing of the strobe lights did trigger some episodes of vertigo, however, but with the new mindfulness and meditation exercises I have been practicing, I was able to keep the anxiety under control and not react, i.e., panic when these symptoms arose.

I have written about the benefits of cruising when living with a chronic illness or disability previously so I won’t repeat the points that I have already made.  What I will say however is that Norway is hands down the best cruise destination that I have experienced.  Not only does it offer the most amazingly beautiful scenery but found the style of living in this spectacular country to be incredibly relaxing.

We are so used to observe people rushing around here in the UK, busy and in a hurry to get to somewhere, so it was refreshing to be in a country which appears to be much more laid-back and where life runs at a slower pace.  As someone with a body that is continually weakened and tired by constant and incessant symptoms; always trying to keep up with the fast pace of the world around me, I welcomed and embraced this different lifestyle to our own.

In my opinion, I also believe that the Norwegian Fjord itinerary is the ideal choice for those considering their first cruise, or those travelling with a disability.  As many of the ports are within the centre of the city or town, therefore, when disembarking the ship, you are to explore the area at your leisure as all the local amenities are within easy walking distance.

[Tweet “A Norwegian Cruise is ideal, as the local amenities are within easy walking distance. “]

For me, I found this much less stressful than some of the other places we have visited on other cruises, especially those which require a shuttle bus to transport you from the port, which demanded some waiting around in large and claustrophobic crowds.

Bergen, the first port of call we visited, did require shuttle bus transport from the port. However, the minibus for those with wheelchairs was ready waiting for us as we departed the ship which took the stress out. As fatigue descended upon all of us and we were ready to wave goodbye to Bergen, the minibus was again primed and waiting for us right where it dropped us off.

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Bergen on a grey and damp day

The second port of call, Olden which greeted us straight away with its majestic and beautiful views is often a favourite for those who love to hike, but as someone with mobility problems, I am unable to pursue such adventurous pursuits.  I was not to miss out, however, as a little land-train greeted us from the parking area where the ship was moored, which took us around one side of its lake before travelling down the other and back to the ship.  A must for anyone who wishes to take in the beauty of Olden but has mobility difficulties or is in a wheelchair.

[Tweet “The land-train…a must for anyone wanting to see the beauty of Olden but has mobility difficulties.”]

Unfortunately, when we arrived at the third port of call, I was too unwell to be able to venture off the ship to explore the cosmopolitan town of Alesund.  But instead of dwelling on that what I could not do, I instead focused on everything that I had achieved during the holiday despite the wobbly legs and other symptoms that I was continuously fighting.  Thankfully, the day of rest was exactly what the doctor ordered, and I found myself fit enough to go off the ship and enjoy the wondrous city of Stavanger.

[Tweet “I chose to focus on everything I achieved despite chronic illness instead on what I couldn’t do.”]

Mum and I enjoyed the time to walk around this fantastic city and take in some of the more familiar shops such as H and M, Zara as well as observing the all-too-familiar sights of McDonald’s and Starbucks!

My favourite part of the day was taking a wander up to the old town of Stavanger to appreciate the quaintness of its old cobblestones and the cities old homes. It was on this day that my stubborn streak regarding the use of the wheelchair, insisting that I didn’t need it and pushed through the pain.

Of course, by the end of the day, the pain was excruciating, and I was in need of a long soak in one of the whirlpools aboard the ship, which only seemed to ease the pain for a short time.  That would be a piece of advice for fellow cruisers – a mobility aid is there for a reason – to be used, so don’t become a martyr to the pain or other symptoms that may require you to use the chair.

By doing so, you will be able to do and enjoy much more than if you didn’t use it!

To conclude the adventure of exploring the gorgeousness of the Norwegian Fjords, I would have to affirm that this has to be one of my all-time favourite holiday destinations and that I am now a tiny little bit in love with Norway!

[Tweet “I am now a tiny little bit in love with Norway! “]

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Sailing Away to Acceptance…

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How does the old saying adage go?  What a difference a year makes. And, my recent experiences can only substantiate this.

Regular readers of the blog will remember that last year, I experienced my very first cruise and that unfortunately, it did not go as well as my parents and I had hoped.

The symptoms associated with this neurological condition were consistently present and remarkably severe that it affected my enjoyment of the holiday and also left me unable to disembark the ship and see the beautiful places that I was so looking forward to visiting.

Fast forward a year (okay more like a year and a half), and I am back from yet another cruise! Why go on a cruise when the first one did not go well, I hear you ask.

Well, the large part of the reason why I decided to go another cruise, is that I refuse to let the neurological condition that I live with have any more control over my life than it already has.  I came across, a perfect quote that sums this up brilliantly; this quote says “Life begins at the end of your comfort zone.”

And it is true, if we only stayed within the confines of our comfort zones then we would never know what we can be capable of, or what we can achieve when given a chance.

[Tweet “If we only stayed inside our comfort zone we would never learn what we are capable of.”]

comfortzone-quote
The symptoms that are as a result of the brain stem lesion already makes life difficult, for example, visiting certain types of places such as those with high ceilings and fluorescent lighting are very challenging for me as they increase the severity of symptoms such as dizziness and vertigo.

As a result, I do not wish for my condition to stop me from doing anything else that I want to do, including taking trips abroad.

Flying and therefore requiring to spend hours waiting in an airport would not be compatible with my symptoms so consequently, a cruise offers an alternative for me to be still able to travel. Furthermore, the rational side of me also realised that although I found the first cruise particularly difficult, it does not necessarily mean that I would have the same experience on future cruises.
IMG_0007
Back last year, just a few months after arriving back from the Mediterranean, my parents and I booked a second cruise with Royal Caribbean on their brand new ship Anthem of the Seas travelling this time around the Canary Islands (as well as stops in Spain and Portugal).  And I am so glad that I did!

This cruise went much better than the last one and even managed to get off the ship twice, leading to spending a few hours perusing the streets of Tenerife and Madeira.

The process of disembarking the ship and then having to find our way to wherever we wanted to visit was not easy especially giving the severity of the symptoms, but I still managed to push through and achieve something I did not think I could do.  To some, getting off at only two stops may not seem like much, but fellow spoonies would appreciate the enormity of this feat, especially when battling constant and unrelenting symptoms.

Anthem of the Seas is a fantastic and beautiful ship, and Royal Caribbean has seriously gone hi-tech.  Before embarking on the cruise, we bought an internet package, and was impressed with the speed of the bandwidth, enabling me to stream movies and television programmes on my iPad occupying my time when fatigue set in (which was a lot!.

The WOW factor did not stop there, however; all over the ship, there was amazing artwork to marvel at, often feeling like Alice landing in Wonderland.  What I love about Royal Caribbean, is the thought that has gone into the design of their ships; all public areas are fully accessible and have automatic doors making it easy for those in wheelchairs to be able to navigate their way around the boat unaided.

The food was also stunning and particularly loved having a wide variety of choice of where to have dinner.  We sampled the delights of the majority of the complimentary restaurants onboard but spent most nights dining in the American Icon Grill.  One night, however, we chose to pay extra and ate at Jamie’s Italian where the food was delicious and the staff attentive and friendly.

The highlight of the cruise for me, being a fan of Queen was seeing We Will Rock You, which was incredible and rivaled any West End show.  My Mum and I also paid extra to use the facilities in the spa, which included an aromatherapy steam room and sauna, as well as the use of hotbeds which not only did I find incredibly relaxing but also really helped ease the often excruciating pain in my legs.

Beautiful sunset
Beautiful sunset

Strange though isn’t it?  Last year, I was unable to get off the ship and generally found the whole cruise experience extremely difficult.

A year on, however, and despite my symptoms not improving in that time I found this holiday much more comfortable, even managing to push the boundaries of my comfort zone.

Why is this? Perhaps the reason is that during the past since the first cruise I have managed to push myself further, expanding the perimeter of the small world that my neurological condition has forced me inside.  Examples include conquering going to the cinema, a pastime that I used to love but is now extremely difficult for me as a result of my severe and unrelenting symptoms and as a result started to avoid.  By pushing myself to go to places and placing myself into situations that increase the severity of my symptoms, and achieving staying in them, reinforces the belief that I am stronger than my condition and can get through stressful situations.

[Tweet “By going beyond our comfort zones shows us that we are stronger than our illness has us believe.”]

Or perhaps I have reached a new, deeper stage of acceptance.

Accepted the reality of the diagnosis of a long-term neurological condition  – that is not to say that I have given up and surrendered to the disorder but rather let myself go of the suffering that came from continuously fighting against the symptoms and the hold that they had over my life.  I have accepted that I will always have difficulty with certain situations and the majority of things will not be easy for me, but what I can control is my reaction to them, and by doing so I can learn to be in control of my symptoms instead of them controlling me.

[Tweet “Acceptance has helped me learn to be in control of my symptoms instead of them controlling me.”]

Believe. Love, Live, Dream, Inspire - some positive words advice from Royal Caribbean
Believe. Love, Live, Dream, Inspire – some positive words advice from Royal Caribbean

In the end, I had to accept the reality of the symptoms; accept the long-term presence of them in my life.  And by doing so, I no longer fought the presence of the symptoms but acknowledged their present existence at that moment.  I have freed myself from the prison of fighting against the symptoms, and avoiding certain places and situations has placed me in.

By accepting the reality of life with a long-term condition surprisingly made it easier to cope with the symptoms and all of the ups and downs as a result of living with a chronic illness.  I was able to find little coping strategies that helped minimise the effect of the symptoms and help me stay in control of the symptoms rather than the symptoms controlling my life.

Of course, there are days when it feels that the symptoms still have control over my life but by accepting the reality of life with chronic illness, getting through the bad days is easier than before.

Above all, going on holiday on the cruise of a lifetime has made me realise that being diagnosed with a chronic illness, or disability does not spell the end of our lives or even our dreams.

Yes, perhaps the route to which we can reach our goals and dreams may have to change, but we can still reach that final destination.  Chronic illness should not mean the end our dreams; we can still follow them if we took a leap of faith.

[Tweet “We can still achieve our dreams and ambitions if only we took a leap of faith.”]

It is this realisation that I came to while on holiday – if I took the easy option and decided not to go on the cruise then I would never realise the strength and control that I can have over FND and its symptoms.  And if it weren’t for that, then I would never have the opportunity to visit a country that I have wanted to for so long – Norway!

Yes, we have booked yet another cruise for next year to the beautiful and amazing country that is Norway.  And this trip I can look forward to with excitement and positivity instead of anxiety and trepidation.

So all of you reading this – don’t give up on your dreams, believe me, you can still achieve them despite the challenges in your way.

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HAWMC Day 20: Going back on the waves…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based on given prompts.

Monday 20th April: Travel Time 

If you could travel anywhere in the world, where would you go and why?  Maybe you’ve already traveled to an exciting place and want to go back.  We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

“Don’t float through life, make waves…”
– unknown

Travelling has never been an activity that I have particularly enjoyed.

I am very much a home-bird; never happier when I am at home surrounded by the comfort of the familiar.  Packing for holidays has also been something that I have found stressful, with my parents constantly barking at me to get everything I am taking with me ready, and then asking if there is anything that I have forgotten!

As my condition has steadily worsened over the years, holidays, as a result, has not been a priority and therefore have stayed with family whilst my parents have gone on holidays including a trip to Canada, and their first cruise to celebrate their thirtieth wedding anniversary.

The debilitating symptoms and love of the familiar are not the only reasons why travelling is just not my bag.  Living with a long-term condition in which the symptoms fluctuate, and as a result makes life very unpredictable.  Life with a chronic illness is often extremely unpredictable, never knowing how we are going to feel from one day to the next, and never knowing when symptoms are suddenly going to appear.  And it’s this unpredictability therefore that makes travelling particularly difficult and daunting also.  As my condition, and particularly the dizziness and vertigo worsens in buildings with high ceilings, such as airports, for example, flying abroad is also very problematic and therefore has prevented me from being able to travel.  Because of this it just seemed easier not to travel and instead enjoy the sights on one’s doorstep as an alternative to travelling long distances.

However, two years ago and after experiencing difficult times as a result of the neurological condition I live with, my parents decided that we were all in need of a relaxing holiday and away from the stresses of illness, hospital appointments as well as those experiences in everyday life.  And somehow, they talked me around to going on a Mediterranean cruise visiting France, Italy, Spain, and Portugal.

This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extroadinary beauty of my surroundings
This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extraordinary beauty of my surroundings

All my research assured me that this type of holiday was ideal for those with disabilities or chronic illnesses; not only is cruising extremely relaxing but also has the benefit of having your cabin close by for when symptoms appear out of the blue and suddenly being taken ill.  Cruise ships are also fully accessible if a wheelchair is needed, and unlike air travel, there are no long waits or delays at airports, so much less stressful than flying to holiday destinations!

Regular readers of the blog will know about the trip which I wrote about in a past post.  The cruise was difficult for me due to a sudden deterioration of my symptoms which occurred a couple of months before the start of the holiday. As a result, I was unable to get off the ship at the different ports and go on the excursions.  Most of the holiday was either spent in the cabin reading or sleeping, or in the solarium relaxing, in the attempts to ease the excruciating pain in my legs.

Despite this, however, this year I am once again going on another cruise, even going on the brand new Royal Caribbean cruise ship, Anthem of the Seas!

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A lot of you, are probably wondering why I would choose another holiday after my first experience last year.  Well, yes, the holiday did not go as plan and was left unable to do many things that I was looking forward to before leaving due to severe and debilitating symptoms, but that did not mean the experience itself was awful.  We needed a holiday to relax, unwind and switch off from the stresses of everyday life, which despite the pain and other debilitating symptoms affecting the holiday, I still managed.  The cruise was not an awful experience, and there were plenty of moments that I thoroughly enjoyed (such as dressing up) during the trip.

Furthermore, I thoroughly believe that we cannot let one bad experience put us off from trying again.  Just because I experienced a relapse in the debilitating symptoms last year before and during the cruise, does not mean that the same thing will happen this time.  This cruise will be my second, and therefore will be easier, as I am more aware of what the experience will entail and am able to put actions plans into place for when symptoms arise or when I am suddenly taken unwell.

In addition, the last holiday also helped me realise the need for a break from seeing the same four walls every day and the same routines we live out; the cruise was a welcome break from constantly being stuck in the house, or held up in my bedroom due to severe symptoms.

It was an opportunity to see new sights and experience things that I could never encounter at home.

Photos from Royal Caribbean Blog

This time around, however, we will be cruising around the Canary Islands and visiting ports in Spain and Portugal also.  It again will be a welcome respite from the stresses of living with a neurological condition, and endless medical appointments, as well as the opportunity to absorb plenty of vitamin D with its many health benefits.

With the first cruise on the new ship being imminent, and therefore being inundated with photographs of the beautiful decor and the many new activities to experience onboard via social media, I am beginning to get very excited about our cruise in September.   I am determined to forget about the disappointments caused by the previous cruise, and even more determined to enjoy and soak up as many new experiences as possible this year.

What about any tips that I could offer for travelling with a chronic illness?  There are plenty that I could offer after my experiences last year but here are some of my top tips:

  • Let the travel company know of your medical condition and any help that you may need.  When booking a cruise, or booking a hotel room, book a wheelchair accessible cabin/room, if a wheelchair is required for the holiday (it may be best to hire one if you do not own your own especially if symptoms such as fatigue is a problem).
  •  Carry all your medications and other necessary items with you in your carry-on luggage.  When cruising, your luggage is taken from you after arriving at the port and you do not see them again until you are in your cabin.  However, with a lot of passengers, onboard delays can occur so any important items are best to pack in your carry-on luggage.  Also, include items such as swimsuits too so you can make full use of the amenities as soon as you are onboard.
  • Expect the best but prepare for the worse.  Chances are, you may not be able to participate in all the activities and trips during the holiday.  So, as a result, prepare for some quality time by yourself in the cabin or hotel room.  Bring books, audio books, MP3 player or anything else you can do to keep yourself entertained whilst resting.  Wi-fi may not be available so perhaps try downloading some movies before you leave in preparation
  • Don’t overdo things.  It can be so easy to get carried away on holiday, and push your limits to keep up with everyone else, but don’t forget to listen to your body and take a break if you need to, because if you don’t you may pay for it later
  • Prepare yourself mentally for leaving and accept your limitations. Experience has taught me that you need to know your limitations and accept them before you leave, as chances are, you will not be able to do everything that you want during the trip and it’s best to accept this before you go and instead of worrying or getting upset by it, instead make the most of everything that you can do and enjoy them
  • Have a great time!
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HAWMC Day 9: Getting out of the Comfort Zone

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Thursday April 9th: Challenger 

Share with readers about a time you had to overcome a daunting challenge.   What words of encouragement would you share with others who find themselves facing similar difficulties?

The last daunting challenge that I had to face, and one of the biggest challenges that I’ve faced for a long time, was our holiday in May of last year.

The holiday was a fifteen-night cruise around the Mediterranean Sea, visiting ports including Cadiz, Barcelona, Livorno (Florence) and Civitavecchia (Rome).

Not only was the first time that I was to go on a cruise, but it was also the first holiday I would have been on, since the deterioration of my symptoms such as the dizziness and weakness in my legs.

The magnificent ‘Adventure of the Seas’

I mentioned in a recent post, about the anxiety provoked by going to new places or experiencing anything new can be for someone living with a chronic illness.  Not only do visiting or experiencing anything new raises a lot of ‘what if’ questions (What will I be like?  What if I become ill? for example) but as chronic health conditions often flare, we therefore do not know how our conditions are going to be around the time we are away.

Furthermore, as someone living with a chronic illness, familiarity is comforting.  Being surrounded by everything that is familiar is comforting; they hold special memories, and know familiar places like the back of our hands and if we become ill we know exit strategies or places easily accessible to recuperate until we feel better.

We may be missing out on incredible adventures and challenges if we don't push our comfort zones
We may be missing out on incredible adventures and challenges if we don’t push our comfort zones

Being out of our comfort zones, therefore is uncomfortable and scary.  The fear of the unknown is overwhelming.  And this is exactly how I felt for days leading up to the cruise, especially as I was also experiencing a bad time with my symptoms at the time.  There were times, I admit that I really didn’t want to go, but looking back, I was so glad that I did.  Here are some words of advice and encouragement that I would give for anyone in the same position:

  • Talk through your fears and worries with somebody else, preferably someone going with you on the holiday (or whatever situation you are in).  Our minds will very often catastrophise things, and these thoughts often become out of control when we bottle them up.  So, talk through the worries and anxieties with another person and then talk through coping strategies and action plans for various possible scenarios
  • Make an appointment with your GP and ask for some extra medication to see you through the holiday.  I was so glad that I did, as because I was experiencing a sudden deterioration in symptoms, the doctor prescribed me some extra medication for the worsening pain which really helped during the cruise and helped with sleep
  • Do not focus on what you cannot do, but enjoy and make the most of what you can and what you enjoy!  On the cruise, as I was feeling so bad for the majority of the time, I found that I was unable to do things that I was looking forward to such as getting off the ship and visiting places like Rome and Florence.  At the time, however, I spent so much time being upset and frustrated at not being able to do it, that I forgot to enjoy the little things that I was able to do, such as the relaxation and pampering in the solarium and using the wonderful facilities such as the jacuzzi, which really helped to ease some of the pain
  • Relax and enjoy!  Holidays are all about resting and relaxing (in my opinion), and everyone has different ideas on what this entails.  If this means, lying on sun loungers all day, or reading by the pool then do it!  Don’t compare your holiday experience with somebody else.  Make the most of what you are able to do.
  • Feel the fear and do it anyway!  If there is anything that I learnt during the daunting challenge last year, it was definitely to worry less and enjoy it more.  Going on holiday with a chronic illness is challenging, however, it is also very worth it.  It allows not only a break from the ‘spoonie’ routine of doctor and hospital appointments but also allows a welcome respite from the confines of the four walls of our homes where we spend a lot of our time.  So, just go and make wonderful and lasting memories to cherish for many years to come!
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