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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 excellent care that the staff provides 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.

[Tweet “Royal Caribbean does an excellent job in looking after those passengers with disabilities.”]

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 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 thought 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 had 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 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.

[Tweet “I was awash with constant motion on the cruise as a result of my hypersensitivity to movement.”]

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. A beautiful shot of Nice

The symptoms, however, did not dissipate or I recovered enough to enjoy the experience fully, 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 six books during the 15-night cruise, some of which I have wanted to read for a long time but hadn’t found the time.

[Tweet “I couldn’t do much due to the severity of my symptoms so I had to make the most of what I could do.”]

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 about 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 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 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.  It made me feel very dizzy and setting off episodes of vertigo, and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time 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 used during the performances, 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 afterward, 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 at 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.  Back inside the cabin, we were 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!!

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 in the back of my mind.  Also, 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.

[Tweet “I’m glad that I went as if I hadn’t there would always be asking ‘What if?'”]

Our holiday had started the day before we got on board ‘Adventure of the Seas.’  To avoid the stress of travelling and rushing to get to the port on time, my parents and I drove to Southampton on Wednesday and stayed overnight in a Premier Inn close to Southampton Port.  I will admit that the anxiety levels were high, and did work myself up about going on the holiday.  However, the anxiety was not about the cruise itself, but rather about the reaction of my neurological condition and the symptoms while being on a ship with the constant motion that it brings.  This anxiety was particularly evident before the cruise, the symptoms that I experience have deteriorated with the trembling in the legs increasing in severity, as well as the dizziness becoming much more powerful.  Furthermore, a couple of days before the start of the holiday I experienced a total loss of vision.  Regular readers of the blog will know that I suffered this particular a few months ago. However, I have not experienced these attacks for some time so as you can imagine it was very disconcerting for them to occur right before going away.

Therefore, due to these circumstances, I was very hesitant about going at all, but my parents and a great friend reassured me that I would be fine, reminding me of all the positives of going such as time away from the house where I spend the majority of my days.  Admittedly, the condition is horrible at home, and therefore it would feel the same on holiday as it would at home anyway so may as well take advantage of the change of scenery.  But as many spoonies will you relate, when you are so unwell, and symptoms are severe it’s a real comfort being in familiar surroundings with items which bring happiness even on the dark days.  Therefore, that was one of the worries I had – that being in unfamiliar surroundings and away from all of my items that bring me comfort, I would not be able to cope.

[Tweet “A worry about travelling is that you will not be able to cope being in unfamiliar surroundings.”]

The magnificent 'Adventure of the Seas'
The magnificent ‘Adventure of the Seas’

But instead of taking flight away from my fear, I instead I fought against it and on the morning of Thursday 8th May, along with my parents we made our way to Southampton Port and got our holiday started.  It is this part of the holiday that I understand why many disabled travellers prefer cruises to air travel.  The boarding process was easy and relatively quick!  We dropped off our luggage with the porters and parked the car in the long-stay disabled car park, and then carried our hand luggage to the arrivals lounge.  In the arrivals lounge, there was a separate booking area for those people like myself, with disabilities. A desk to check passports as well as for having a photograph taken for your sail pass.  The sail pass is a credit card sized pass which acts as a form of identification throughout the cruise as well as an onboard payment method linked to a credit card.  We then made the short distance along the gangway and then onto the ‘Adventure of the Seas’ for the start of our holiday.  We were on board for approximately 1.30 pm, several hours to explore before the ship was due to set sail for the Mediterranean.

[Tweet “The boarding process for going on a cruise is so easy and relatively quick!”]

My copy of the sail pass card; the card is used for purchases made onboard as well as used to book on and off the ship thereby acting in a similar way to a passport
My copy of the sail pass card; the card is used for purchases made onboard as well as used to book on and off the ship thereby acting in a similar way to a passport

Without the hassle of waiting around an airport for hours ready to board, a cruise holiday begins as you step onto the ship.  However, it can take some hours to be reunited with the luggage that you left with the porters. Therefore it is advisable to take a piece of carry-on luggage with you containing essential items such as any medications, and perhaps a change of clothes for the evening and a swimsuit so you can take advantage of the facilities straight away.  As we arrived at our stateroom, I was very pleased.

[Tweet “Take a piece of carry-on luggage with you with any important and necessary items.”]

As I was going to be using the wheelchair for the most of the holiday, we booked an accessible stateroom.  Our first choice was a cabin with a balcony, however as all those staterooms were fully booked we settled instead for an inside cabin overlooking the Royal Promenade; an extended, open, level area which is home to a series of shops and bars and even offers entertainment on some nights.  So, it might have been for the best as, where our stateroom was situated meant that I had a great view of the parades, and so had the choice of watching them from bed if I wasn’t well enough to attend them on those nights.  Our stateroom was on the seventh deck, and a short walk to the ship’s library – perfect for a bookworm like me!  Advice that I would give if considering a cruise is to book early to ensure that you can get the type of stateroom that you desire, especially true if wanting a balcony room as they are often the most sought after.  The wheelchair accessible stateroom like ours is 1.5 times bigger than the traditionally sized staterooms, with widened doors, a wet room, and a raised toilet.   The only downside for being a disabled passenger is that to ensure an accessible cabin for your trip (they are only a small number available)  you need to book early, and as a result, often miss out on special deals and offers.

[Tweet “You need to book a cruise early to guarantee an accessible stateroom.”]

The ship itself is beautiful and decadent, and what makes these holidays great is that there are no inaccessible places for those in wheelchairs.  There are plenty of lifts onboard, although they are rushed during peak times such as before shows, or prior dinner so if you are cruising with a disability I would recommend arriving at places such as the theatres and the dining room earlier to avoid the crowds of people using the elevators.   If wanting to watch a film in the Screening Room for instance in your wheelchair, then you need to arrive in plenty of time before the start of the film as disappointingly there is only one wheelchair seat available and so plenty of disabled passengers are often left disappointed when unable to watch a movie.  The ship is spacious and is easy to navigate around the vessel as there is plenty of room for both abled passengers and those in wheelchairs to steer around the public areas; the hallways are even wide enough to allow a wheelchair and a person to walk past each other.  Although there were plenty of passengers onboard, it often didn’t feel very crowded, however, which perhaps speaks to the size of the ship.

[Tweet “It’s amazing that it never felt crowded on the ship despite a large number of passengers onboard.”]

I would like to thank all of the staff on ‘Adventure of the Seas’ as the majority of the team were extremely helpful, and spoilt us during our stay onboard.  Our room attendant, Roseanna was extraordinarily lovely, and always stopped to say hello and made us feel special, such as always remembering our names which for the number of people she must look after cannot be easy!  As I spent a lot of time in the cabin, I often saw her as she came into our cabin to make up my bed and every time she asked me how I was feeling and if there was anything I needed, and also had a special nickname for me – Rihanna!

And the food onboard was incredible – the meals were delicious with a variety of choice and most incredibly offering gluten-free or lactose-free varieties on some of the dishes, so those with food intolerances are well taken care of on board.  It was such a pleasure to enjoy a starter, main and dessert every night; a decadence that I am most certainly not familiar.  Starters such as Crab Cake, Spinach Dip, and Chilled Pina Colada Soup were among my favourites.  My favourites among the main courses I enjoyed on board was the Asparagus, Peas, Scallops and Crab Spaghetti Pasta and the Ravioli Mare Monte (cheese filled pasta in a crab and mushroom sauce).   The desserts most surprisingly were not my favourite dishes during my time on the cruise but did particularly enjoy the Orange and Almond Cake and the low-fat Peach Melba.

All in all, I felt that being in a wheelchair and going on a cruise was a perfect fit – no hassles in airports with the endless waiting around, and cruise ships are fully accessible with helpful and attentive staff.  I would say it is easy for a person in a wheelchair to enjoy a holiday in style.

I thought that I would write a little introduction and overview of what is like to go on a cruise with a disability.  In the next post, I will speak about the trip from a personal viewpoint and how I felt on the trip as not only with someone with a disability but also as someone with a neurological condition living with symptoms such as dizziness and issues with balance, etc.  Is there any information that I might have missed out on which may be useful to know, or would like to know more?  If so, please leave a comment in the section below.

[Tweet “I felt that being in a wheelchair and going on a cruise was a perfect fit.”]

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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 prompts given.

Today’s prompt reads as follows:

Summer Lovin’…Summer is coming up.  What plans do you have?  Any family vacation?  What do you look forward to in Summer 2014?

I have to admit that I currently have no plans for the Summer of 2014.  Why is this?  For starters, in my opinion making long-term plans whilst living with a neurological condition or chronic illness like myself, can be extremely difficult.  It can be extremely difficult because everyday is an unknown.  We do not know what each day will bring; how severe the symptoms associated with our condition and how we will feel from one day to the next.  Sometimes especially when experiencing a bad flare in our conditions, we do not know how we will feel one minute from the next even, and so therefore making plans can often be problematic as there is always the worry that we will need to cancel.  And cancelling plans not only disappoints those with whom we have made those plans with, but also leads to disappointment for ourselves.  You know that phrase “We plan, and God laughs” – never has a saying been so true for life with chronic illness, except that it is our bodies that laugh and not God.

"People plan and God laughs" or the Spoonie equivalent is "We plan and our bodies laugh!"
“People plan and God laughs” or the Spoonie equivalent is “We plan and our bodies laugh!”

By the time that Summer arrives of course, I would have already have been on my holiday.  The first holiday in fact that I have had for several years.  At this very moment, I am a mixture of being very excited but also very nervous.  Living with my neurological condition can be very difficult, and therefore I realise that going on holiday may at times be very difficult due to my symptoms such as dizziness.  However, as I am going on a cruise, it has a variety of benefits, such as being able to set the pace for the holiday itself.  I can be as active or passive as I want; and in addition if I suddenly become unwell, I can simply head straight back to our cabin without the hassle of travelling back to a hotel from the beach or from somewhere further afield.  Also, being on a cruise ship could also lead to more independence away from my parents as I can (with hope) wheel myself around to areas of the ship where the activities that I want to take part in are held.  For example, I have learnt that often cruise liners hold art and craft sessions, such as lessons in jewellery making or scrapbooking and so as I have found art and crafts to be useful in distracting myself from symptoms such as dizziness and chronic pain and so therefore may be beneficial for me to attend such onboard activities.

I also know that it may take a while to recover from the cruise and from all of the added activity that comes from being on holiday.  The start of the Summer therefore may be recovering from the holiday.  Unfortunately, the Summer may also see more hospital appointments as am waiting for an MRI to be conducted before seeing my consultant again.

Although I don’t have definite plans for this Summer, I do hope however for more lovely, relaxing and fun days out with my carer and enjoy the most of the warm weather.  Day outs to nearby tourist attractions, days out shopping or simply a trip to our favourite coffee shop, I don’t really mind as long as the Summer isn’t spent in my house with only my symptoms for company.

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