A Personal Experience of Cruising with a Neurological Condition

As mentioned in my previous post, I concluded that in my opinion cruises are a perfect option for those with disabilities due to the excellent accessibility of cruise ships by large companies such as Royal Caribbean and the wonderful care that the staff provide for those passengers with a disability.  It is also preferable to using air travel because of the lack of waiting around for hours in a large airport.  However, as the first post was a general overview of cruising with a disability, I wanted to write another post, writing about my own experiences of going on a cruise with a neurological condition.

As regular readers will know, one of the main symptoms that I experience as a result of the brain stem lesion is dizziness and problems with my balance.  As a result, I was hesitant about going on a cruise because of the severity of these issues that have been increasingly become worse recently.  In fact, a few days before leaving for the holiday, I was in floods of tears stating that I couldn’t face going on the cruise because of how sick I have been feeling.  Furthermore, the attacks of losing my vision also came back the days before the start of the holiday, and as a result, I just felt that I wanted, or even needed to stay at home to be among the familiar surroundings and those items that give me comfort.  I was frightened of these episodes occurring when in unfamiliar surroundings and somewhere where I do not know the layout.  I was eventually talked round into going obviously and had to go anyway as it was too late to cancel without losing a substantial amount of money.

I so wish that I could write telling you, I had a fantastic time.  I wanted so much to be well enough to enjoy the whole cruising experience as well as visiting new places such as Rome and Florence.  However, unfortunately, I found the majority of the holiday feeling very unwell.  The dizziness and vertigo were severe for the entire trip and has not settled since returning, so I am hoping it is not yet another deterioration in my condition.  A lot of people who I know that have been on cruises assured me that these ships are so large that you cannot feel them moving at all (apart from the times when the sea is rough!), however, my experience was far different.  Even when the cruise ship was docked at the ports, I still felt the ship moving; for the entire holiday, my world was awash with constant motion.  Perhaps due to the neurological condition and the problems with balance, as a result, I am hypersensitive to any type of movement.  Furthermore, as a consequence of the increased problems with my balance while onboard, the number of falls that I experienced increased as a result and therefore had to rely on my wheelchair for most of the cruise.  However, having said this for me, a cruise was preferable as if my severe symptoms suddenly presented themselves then I would not be too far from the cabin where I would be able to lie down and recuperate until the symptoms dissipated and I felt well enough to rejoin the fun onboard again.

I didn't manage to get off the ship during the cruise but didn't miss out on the amazing sights that were on offer from the ship itself.  This is an amazingly beautiful picture of Nice
I didn’t manage to get off the ship during the cruise but didn’t miss out on the amazing sights that were on offer from the ship itself. This is an amazingly beautiful picture of Nice

The symptoms, however, did not dissipate or I recovered enough to fully enjoy the experience, and therefore, unfortunately, was unable to leave the ship and visit the various destinations that the ship docked.  The symptoms were just too severe for me to feel well and strong enough to get off which is such a disappointment for myself as I so wanted to visit these places and those in Italy in particular.  Instead, I had to make the most out of what I could do, which was not much because of the severity of the symptoms and due to the weakness in my legs.  Instead, I stayed in the cabin and slept due to the fatigue or spent the time reading.  It might sound as if I didn’t accomplish much. However, I did manage to read a rather impressive 6 books during the 15-night cruise, some of which I have wanted to read for a long time but hadn’t found the time.  A positive therefore is that the holiday gave me time to rediscover a love of reading and losing myself in stories that for a short period took my mind off the dizziness, trembling, weakness, fatigue and pain.  And talking of pain, I spent a lot of time using the Solarium and enjoying the facilities including the warm Jacuzzi, sauna and steam room.  I found that spending time in the jacuzzi was excellent to relax and unwind from the stresses and worries of my condition as well as helping to ease the pain that I experience in my legs.  In addition to using the jacuzzi, my mother also splashed out for us to have a massage at the onboard spa Adventure of the Seas, which again was incredibly enjoyable as well as being extremely relaxing.  The masseuse noticed the stiffness in my legs, as well as my cold toes, which apparently is a sign of poor circulation so, was even recommended on some oils which we could use at home to ease the pain and increase the circulation in my legs.  It was very pricey but really was worth every penny.  My highlight of the holiday!

My sanctuary onboard Adventure of the Seas
My sanctuary onboard Adventure of the Seas

Even going down for dinner was difficult for me – the lighting, the varying ceiling heights and the loud noises  all seemed to bother me,, making me feel very dizzy and setting the vertigo and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time in order to block out the stimuli which were making my symptoms worse.  I was unable to attend the shows because of the strobe lighting and flashing lights being used, as they too are a trigger for the episodes of vertigo that I regularly experience.  However, I did attend an ice show which used such effects, and was very unwell afterwards, with the inability to even get dressed the very next day.  People did stare and felt very self-conscious but I remembered a great quote by Dr Seuss “Those who mind don’t matter and those who matter don’t mind.”  A lot of people who we met during the cruise were lovely and very understanding such as Gemma and Stan, a granddaughter and granddad who sat on our table at dinner.  Both were lovely and we enjoyed their company during the cruise.  Although even attending dinner was difficult as positive is that, during most of the holiday I still managed to go despite the severe symptoms I was experiencing and very much enjoyed dressing up for the formal nights.  Arriving back at the cabin we were on some nights greeted with the fun and cute ‘towel animals’ created by our wonderful room attendant (who nicknamed me Rihanna during the holiday!).  They also helped put a much needed smile on my face!!

 

Being so unwell and suffering with severe symptoms so much on a holiday was incredibly difficult and as a result was very difficult to remain positive.  For obvious reasons, did not have room to take my positivity board along with me on the board which is a main tool of mine to remain positive despite chronic illness.  I did however take my gorgeous Book of Strength and Book of Motivation along with me, which helped me to cope during the difficult times.  Then whilst browsing the shops onboard, I saw a gorgeous necklace, depicting the word ‘hope’.  In replace of the ‘O’ was a ribbon using silver stones.  A silver ribbon, I remember reading is used for a variety of different including brain disorders (or neurological conditions) and as a result was drawn to it, and thought it would be a perfect piece of jewellery to remind myself to remain positive despite living with a neurological condition and remain hopeful on the days where dark clouds are appearing in the same way the positivity does for me when at home.  A couple of days before the cruise, they had a jewellery sale – this time selling charm bracelets by the jeweller Bella Perlini.  There were many bracelets to choose from in a variety of different colours; so many that I had trouble to decide which to buy.  Then I found a plain silver charm bracelet, which had the words ‘Live, Love, Laugh and Dream’ engraved and again the inspiring positivity of this piece of jewellery really spoke to me and so had to buy it.  With these pieces of jewellery it is like wearing a piece of my positivity board and carrying it with me wherever I go.

To conclude, the cruise was a difficult holiday for me, with the deterioration and severity of my symptoms.  A cruise, however does offer several benefits such as the easy and fast booking and check-in day on departure day, and the short distance to your cabin when chronic illness strike.  Although, the cruise was difficult and felt very unwell for most of it, I am glad that I went; if I hadn’t there would always be that ‘What if?’ question being asked in the back of my mind.  In addition, if my parents were to go on a cruise again, I would not feel as if I were being left out or jealous that they were going away and I wasn’t because I am aware of the effects that the constant motion of the ship has on my particular symptoms.  But as unwell as I was during the cruise, there were several highlights of the holiday and positives of my time away.  Would I do it again?  Probably not; perhaps the only way, would be if the doctors were able to cure the dizziness that I experience.  How, likely that is I don’t know.

 

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4 thoughts on “A Personal Experience of Cruising with a Neurological Condition

  1. I can’t thank you enough for writing this series about your cruise! I have POTS and often have very severe vertigo. I got motion sickness on the Little Nemo ride at Disney World. Even so, I’ve always wondered about cruises being a potential option for me. But it sounds like it would be just as difficult as I feared. 😦 It’s a bummer, but I’m glad there were at least a few things you were able to enjoy. A vacation for me is really just a separation from the constant worry and concern over my body. So it sounds like with a little massage, sauna and rest you at least got to have some of a vacation!

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