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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?'”]

Welcome to all readers new and old.

Sorry for the lack of content recently, but as some of you may remember I wrote a post as part of the WEGO Health HAWMC on how I was about to embark on a cruise; the first holiday that I have been on for some considerable time ( you can read the post here).  Anyway, yesterday I arrived back from that very cruise.  I would love to say that the experience was amazing and completely enjoyable, but unfortunately the neurological condition and the symptoms that go along with that, very much got in the way and made the holiday experience very difficult at times.  I will write a post all about my personal cruise experience in due course, but at the moment life is busy with unpacking and sorting through all of my many emails!

Anyway, just wanted to make you all aware that again I have contributed to the wonderful ‘The Pillow Fort Magazine’, which is a fun, positive and inspirational digital publication for young people suffering with chronic illness.  The premise of the magazine and the wonderful community that the editor Lizzy has established is to provide a safe, positive and fun sanctuary for those battling chronic illness to be uplifted, inspired and make the experience of living with illness a little more fun, or in the words on the website ‘make chronic illness suck less.’  Inside the magazine there are approximately 20 submissions including written articles and beautiful photography from a variety of young spoonies battling with different chronic conditions (of which I am one!).  Each page is beautifully designed as well as being unique.  It is a wonderful magazine, and one which is particularly uplifting on those bad days stuck in bed.  The articles are beautifully written and thought-provoking in the sense that it makes you look at living with chronic illness in a different way.  As an example there is a wonderful article on the similarities between various superheroes and those living with chronic illnesses.

Here is a sneaky peek at my pages in the magazine!:

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To read more of my article in the new issue of the magazine and be generally uplifted and inspired by each and every contributor then you can go and get your own personal (digital) copy of the magazine here

And please get in touch and let me know what you think of my article or on the magazine in general! Feel free to leave any comments or suggestions in the comment section below…

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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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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:

Book report…What’s your favourite book and how can you tie it to your health or life?

For someone who is an avid reader, it is very difficult to choose one favourite book!  I am regularly discovering new authors who has written amazing and enjoyable reads that are both thought-provoking and compelling.  However, what does link many of my favourite authors and their books are the lack of characters who I am able to relate to in relation to life with a neurological condition.

Previously, I have written a post regarding the lack of credible and authentic portrayals of neurological conditions and other chronic illnesses within television.  Unfortunately, the same could be said regarding fiction, as there is a lack of novels featuring accurate representations of life with a neurological condition, or even chronic illnesses.  Perhaps, a reason for this is people want to read books for escapism, instead of reading a book about the often gritty realism of what it is to live with a long-term health condition, or perhaps it is the preference for a story that encompasses the hope of recovery and which depicts triumph over adversity.

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One book that I recently read and thoroughly enjoyed, however, did portray one character’s battle with a neurological condition. The condition portrayed in the book, was not in any way similar to that of my own condition but I did relate to the character’s frustration and certain parts of her journey depicted in the story.  The book is by a fantastic author named Lisa Genova.  Lisa herself has a PhD in Neuroscience and could be argued the reason why Lisa is able to intertwine realistic and accurate portrayals of neurological conditions, with not just accurate information regarding the condition itself but also the emotional toll that it can have on both the patient and caregivers.  The book that I particularly enjoyed of hers is ‘Left Neglected‘ a story of a high-powered career woman Sarah Nickerson who is left with a brain injury after a car accident.  The injury is to the right hemisphere of her brain, which as a result leaves her with a ‘left neglect’ or ‘hemispatial neglect’, in which the brain forgets and ignores information on the left side of her body, and also the left side of her entire world.  For example, after the accident, when her husband is stood by the left side of her, as her brain is unable to interpret or process the information Sarah is unable to see him; Sarah is also unable to feel anything on the left side of her body and therefore has to undergo physiotherapy in the attempt to learn how to walk  and generally recover from the traumatic brain injury.

Obviously, there  are many differences between the neurological condition that I live with and that of the character in the novel.  For instance, the condition in which I live with is not a result of a traumatic brain injury, and in addition mine is one in which is life-long and no chance of recovery, where as in the novel through hard-work, determination and the aid of physiotherapy, recovery can be a possibility.  The symptoms of the conditions are also extremely different – in the novel, the character Sarah has to learn and re-teach her brain to acknowledge the left side of the world and her body.  In my everyday life, however I have to contend with constant dizziness, vertigo, trembling and weakness in legs as well as battling fatigue and nausea.

However, as much as there are extreme differences between my situation and that of the main protagonist in the novel, I did find myself relating to the book and that of the experiences of Sarah.  As a high-powered career woman, Sarah was not the type of person to sit around, and therefore the novel excellently explore the frustration of suddenly being unable to do the simplest task for yourself.  On the days where the severity of the weakness and trembling in the leg leaves me unable to get out of bed and so I feel the same frustrations of not just being stuck where I am and unable to do anything for myself, but also the frustration of not being able to do the things you love.  Furthermore, I could really relate to the frustrations of the lack of progress in physiotherapy and the temptation to push yourself before you and your body are ready, leaving to a great many accidents which I have also experienced during my time in physiotherapy and whilst at home.  Very often, when our bodies are at our weakest we adopt a “win” attitude.  By which I mean, we attempt to defy the weaknesses and challenges of our conditions and attempt to ‘run before we can walk’.  And by reading the book, it seems that both myself and Sarah have learnt that instead of trying to ‘win’ and suffering setbacks in the process, such as suffering falls and other accidents, we should instead accept the limitations that our conditions poses and adjust our lives accordingly.

The one thing that I loved and really took away from the book is how that despite limitations and various disabilities does not mean the end of doing what we love; that we can find different ways of doing things or taking part in activities which we never thought possible.  In the book, for example Sarah goes on a vacation with her family and before the accident she loved snowboarding on the slopes where they stay.  It’s at this point that she imagines that she will never be able to snowboard again, however after visiting a shop designed for those with disabilities she found that she may not be able to do like she did before the accident but there are ways in which she can still participate.  It’s this lesson that I have learnt for myself, and one which I am constantly learning as I am finding new ways of adjusting to the challenges that my condition presents.

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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:

Word Cloud…Make a word cloud or tree with list of words that come to mind  when you think about your blog, health, or interests.  Use a thesaurus to make the branches of your “tree” extended further.

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This is the Word Cloud that I have created.  It contains words that are related to my condition, the challenges and problems that the condition has placed upon my life, and other words that relates to health and living with a chronic illness.  It also contains words that have helped me through my darkest days living with a neurological condition – the social media platforms and the people that have supported me, the friends I have made along the way.

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