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Becoming Spellbound by Magic

I think everyone has a favourite film or series of films from their childhood.  For me, these have always been the Harry Potter films.  Despite even being 15 when the first film came out.  

I fell instantly in love with the words, and how J.K Rowling transported you into an entirely different world.  I was already beginning to feel different from on account of my symptoms when the first film was released.  It was a time of loneliness and isolation as the so-called friends slowly ostracised me.  And my home became a place where I spent most of my spare time: the books and films of Harry Potter provided me with an escape, one in which I could inhabit a world of magic.  They were a welcome escape from the often frightening symptoms as well as the loneliness that plagued my life. 

I resonated with Harry’s struggles with loneliness and isolation as he lived at 4 Privet Drive.  But, it also gave me hope.  A hope that like Harry, I would eventually find a place of belonging.

Whether you come back by page or by the big screen, Hogwarts will always be there to welcome you home.

– J.K. Rowlin

As a Harry Potter fan, a visit to the Warner Bros. Studio Tour in London has been on my list of things to do for quite some time. 

Experiencing Hogwarts

Living with this neurological disorder affects my perception of the world.  For example, high ceilings worsen the dizziness I already experience.  Or can even trigger an episode of vertigo.  As such, it can be overwhelming anxiety-producing going to large places such as this, knowing it can provoke unpleasant symptoms.  However, I decided to defy the fear and anxiety and booked a trip to the Harry Potter Studio Tour.  I no longer wanted my symptoms to dictate my life and wanted to experience the magic of Hogwarts for myself.

So on a cold day in late October, we arrived at the magical destination and a mecca for all Harry Potter fans!  We headed to the entrance where there were large wizard chess pieces.  You may remember these from Harry Potter and the Philosopher’s Stone.  And then we were on our way in (after a swift security check!)

There is an option to hire a digital guide. In other words, an audio guided tour of the exhibition.  It gives you an extra insight into the film-making process, as well as exciting trivia about these well-loved films.  In the end, I declined, fearing it would worsen the dizziness and vertigo. 

The Studio Tour

The Studio recommends that you arrive 20 minutes before the allocated time on the ticket.  This time, gives you the chance to peruse the public area.  This area contains a cafe, bathrooms, and an extensive shop of Harry Potter merchandise!  After a short look around, Mum and I descended on the Studio Doors and waited in line for the tour to begin…

Before the tour officially starts, a short film plays about the studio and the making of Harry Potter featuring some very familiar faces.  Then as the doors open, the Great Hall appears in front of us, welcoming us into the world of Hogwarts and Harry Potter. As we went the day before Halloween, there was a dark and spooky theme throughout the tour.  The Great Hall had pumpkins strewn up, for example and Death Eaters cropped up every now and then!

The Great Hall was the only part of the tour that the group was accompanied by a tour guide. As such it was when it felt the most crowded.  After a brief talk, we were left to explore the rest of the studio on our own.  There is still a set route to follow, however, but there is plenty of space, and everyone went off in different directions to see what was of most interest to them.

I found the Great Hall and the adjoining room where a lot of the sets, such as Dumbledore’s office and the Gryffindor Common room was overwhelming.  It was not only the crowds that was burdensome, but also the lights and all of the sets to see.  The dizziness and vertigo, at times, did become too much, but there are so many benches and places to sit during the tour it’s easy to relax and take a break when you need one. 

I loved the Forbidden Forest, however, with the darkness and the sounds it was incredibly atmospheric.  The sounds of the forest’s various creatures and wolves howling, it felt you were walking through a real forest which made it an immersive experience. 

After coming out of the Forbidden Forest, you will find another gift shop, full of exclusive forest themed souvenirs.  Another gift shop can also be found when arriving at Station 9¾ where you can even buy some Chocolate Frogs like Harry and friends do on the Hogwarts Express!

Thoughts on The Tour

The studio tour is incredible, and the attention to detail is awe-inspiring and makes you appreciate the hard work and talent of all those who work behind the scenes of these magical and captivating films.  

The tour highlights the stunning costumes, enchanting sets and thousands of spectacular props set amongst two sound stages and a backlot.  All of what you see seem so familiar.  The tour includes everything you’d ever want to see from the Harry Potter films, which includes:

  • Hogwarts
  • Forbidden Forest
  • Hogwarts Express
  • 4 Privet Drive 
  • Hogwarts Bridge
  • Knight Bus 
  • Costumes 
  • And more!

After visiting the Backlot in which you will find the Knight Bus and 4 Privet Drive amongst others, you can find more about the special and visual effects.  They provide information on how they brought to life the magic to the big screen.  And also discussed the creative development of the magical creatures such as Buckbeak the Hippogriff and everybody’s favourite house elf, Dobby. 

No Magic Needed for Accessibility 

The accessibility of the Harry Potter Studio Tour was impressive.  On arrival to collect tickets, there is a lower window for those in wheelchairs, like myself.  There is also step-free access to the tour, which may not seem like much but is surprising how many popular attractions seem to forget such matters. 

And the majority of the tour itself was fully accessible.  The Great Hall and Diagon Alley was a challenge to navigate because of its slate floor and cobblestone street respectively.  The only sets that were not accessible because they had steps were the Knight Bus and the Hogwarts Bridge.  However, as they are both on the back lot, it is possible to take exterior photographs of them instead.

I was at first disappointed as I thought I would not be able to experience the thrill of being on the Hogwarts Express, but fortunately found that the last carriage on the iconic steam train is wheelchair accessible, and thus didn’t have to miss out! 

I was most awestruck however by the incredible detailed model of Hogwarts, the last stop before leaving the tour.  It was incredible, able to walk around the entirety and see every little detail of the castle and its surroundings.  Definitely the highlight of the tour, in my opinion. 

After we concluded the tour, we had time for a delicious bite to eat in the cafe located in the main foyer and a peruse of the shop.  We then sadly had to say goodbye to the tour and get back on the bus to head back to South Wales. 

I cannot recommend the Harry Potter Studio Tour highly enough, especially for those who are fans of the books, and films.  It’s the most brilliant way to spend three and a half hours.  The magic truly comes alive, casting its spell upon all that enters.  There, I forgot about my worries, and troubles that were plaguing my mind.  Unfortunately, the pain was severe and so not something I could forget, but during the hours I was there though I was not a girl with a neurological condition, but was just another Harry Potter fan. 

Are you a Harry Potter fan? Have you made a visit to the Harry Potter Studio Tour?  What was your favourite part? 

One of my favourite chronic illness bloggers, Sheryl from ‘A Chronic Voice’ has started a link up party! These parties are a monthly get together for any bloggers who live with or have experience with a chronic illness.  These will provide opportunities to ‘meet,’ share thoughts, information and learn from one another.
To gain more information about these parties and information on how to participate then you can visit Sheryl’s original post here.
The prompts for this month are:

  • Missing
  • Appreciating
  • Striving
  • Releasing
  • Eating

Missing: My late dog, Honey 

I’m not going to lie, but I have been struggling these past couples of months and been spending more time alone in the house.  And it’s during these times that I have been really missing the company of our late dog, Honey.  Although she may have been pretty useless if something happened to me such as a fall (which have also been increasing) however the mere presence of having her around was comforting.  Of course, I also miss her copious amounts of hugs and kisses which never failed to make a bad day better.

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Appreciating: Books

In my last post, I wrote about my love of books and reading.  As the pain and relentless trembling in the legs have worsened recently, I appreciate the wonderful world of books for allowing me to escape from the monotony of chronic pain and the other symptoms that have taken permanent residence in my everyday life.  These books, the many that I have read so far this year has taken to many different places that my body is physically unable to go.  It has proven to be a great distraction for me on the bad days, which unfortunately have been many.  And for that, I have been so very grateful.

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Striving: Striving for Progress 

As I have already mentioned, things have been challenging in regards to my health which is really frustrating especially as I take steps to try and improve it – I go to a local gym in the attempts to strengthen my muscles (which hasn’t happened). Or at the least ensure that the weakness does not get any worse.  I also ensure that I spend time every day to complete the vestibular rehabilitation exercises that I was given at the hospital to help with the dizziness and vertigo as well as the physiotherapy exercises to improve the functioning in my legs.  So far, they have been unsuccessful, but still, I persevere in the hopes of improving my situation.  Like all of us, I am never going to achieve perfection, but I hope one day soon I manage to attain progress and improvement.

Releasing: Positive Thoughts 

As a writer myself, I love words, and I love finding new and uplifting quotes to decorate my bedroom to raise my spirits and inspire me on my bad days, and those days I am stuck in bed.  I also own several pieces of jewellery that have a positive quote or mantra that I can wear and remind myself during difficult times.  I release these positive thoughts to elevate my mood.  I have even found some cards that have positive and inspiring quotes on them that I have even used to send to others also living with chronic illness and disabilities (such as the fun and brilliant #spooniepost) to help remind them of everything that is positive during their own struggles.

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Eating: Homemade Pizza

In our attempts to eat healthier, my Mum and I have been spending some time experimenting with some of the recipes from the beautiful cookbook ‘Cook Happy, Cook Healthy‘ by Fearne Cotton.  Our favourite meal from this book has been the Healthy Homemade Pizza which uses spelt flour instead of regular white flour due to its nutritious qualities.  I love this, as it’s surprisingly easy to make and it doesn’t leave your stomach feeling heavy and stodgy afterward, which I often get after indulging in a takeaway pizza.  It has also been enjoyable to make (despite all the mess!), and I have felt incredibly accomplished while enjoying the fruits of our labour!

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All of us will have situations or places that we find difficult; situations that push us emotionally, revealing the depths of our strength and ability to cope with high-stress situations.

Add living with a chronic illness into the mix, and the number of situations or places that we find demanding increase exponentially.  The reasons for the difficulties these places or situations may vary, for some it may be the fear of the ‘unknown’ for example, or even they are a potential trigger for symptoms associated with the condition.  What are some of the places or situations that you find uncomfortable or challenging because of your chronic illness?

One such place for me (could also be classed as a situation too) is the cinema. Especially those large multiplex cinemas that have become so popular, and killing off the small, independent theatres that I prefer.  With its high ceilings, fluorescent lighting and the wide open spaces in their foyers are an enemy to the dizziness and vertigo that accompanies the neurological condition in which I live.

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The Multiplex Cinema – a great enemy of vertigo!

However, with the recent release of the Disney film ‘Beauty and the Beast’ and my intense desire to see it, as the original animated version is one of my all-time favourite films! Which meant that I would have to face the demon that has become the multiplex cinema.

The chain in question is Showcase Cinema, and although in the past I have managed visits to a cinema much further away from where we live, I had decided to try the nearer cinema as yes, it is much closer, but also is more convenient for my needs as a person with mobility problems.

Unlike the cinema, I had visited a few times over the past couple of years; the Showcase is flat and on one level, so no stairs required which are good news for my severely trembling legs.

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Beauty and the Beast. Photo from Disney

The excitement of seeing the film, especially after reading the many fantastic reviews that followed was mixed with trepidation at the knowledge that it would be challenging for the dizziness and vertigo as well as the difficulties that my brain has processing all the visual information.  A couple of times, our plans at going were sadly postponed due to the severity of the pain in legs; pain that left me crying for much of the night and early hours of the morning.

[Tweet “A saying that encapsulates living with chronic illness is “We plan and our bodies laugh.””]

Plans were made to go on a different day, and although the pain was not as severe as before, it was still pretty bad, as well as feeling off kilter.  But then I realised, that there would be no ‘perfect’ day to go and see the film without any accompanying symptoms.

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

If I was going to wait for that one ‘perfect’ day then sadly I might be waiting an extremely long time, or if that perfect day would ever arrive.

As I have mentioned previously, the only predictable thing about living with a chronic illness is the inevitable unpredictability.  The unpredictability that makes scheduling plans so much harder as there is no way of predicting how you will be feeling or what your abilities will look like on any given day.  Then there is the anxiety that symptoms will present themselves when we are out, leaving us in pain and feeling sick when we are supposed to be enjoying ourselves.

[Tweet “The only predictable thing about living with a chronic illness is the inevitable unpredictability.”]

As a result, despite the pain, fatigue, and dizziness I made the decision to brave the cinema anyway.  The symptoms are constantly with me, so I figured that there would be no perfect, symptom-free day to go and face the cinema.  To not go, would be letting my condition win, and this neurological condition has taken enough for me, so why should I let it take away my love for films too?

Despite the positive mindset, I still felt nervous and unsure, but as I went through my handbag, making sure I had everything to take with me, I found a great quote from the Itty Bitty Book Company:
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I did it! I refused to let my condition rule my life, and despite whatever the dizziness and vertigo threw at me I persevered and managed to stay and watch the entire film (which was brilliant and visually beautiful).  It’s strange the strength we have to endure such symptoms and the ability to stay in those situations which are also our triggers juxtaposed with our feelings of weakness.  But one of the reasons why I wanted to share this was to remind everyone struggling with symptoms and living with chronic illness that we are stronger than our conditions.  Our perseverance and tenacity are bigger than our symptoms.  As the above quote reminds us, we can do this (whatever this proves to be).

Sitting there amongst the rest of the audience, I had moments however of feeling entirely alone.  Consumed by feelings of dizziness, and the effects of vertigo while everyone else, including those with me, made me feel alone and isolated, serving me a reminder of how different I am compared to everyone else as well as the tremendous impact that living with a neurological condition has on every facet of our lives.  But again, thanks to the power of social media I realised that I am not alone.  The situations and places that we find difficult and the symptoms they evoke may look different for each of us, but the emotions and feelings they invoke are the same.
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But from going, I also learned some lessons that may help me in future visits, for example, I may need to sit higher up in the movie auditorium as I found that to see the screen properly I had to tip my head back which can be a trigger for vertigo.  Therefore, by sitting further back, I will be in the direct eye line of the screen.  Coping strategies are also needed when facing situations that can trigger symptoms, so it is imperative to find what helps you no matter how silly it may seem to everyone else.

Why I found that inner strength to decide on going to the multiplex cinema, which only leaves me feeling dizzy and nauseous is also perhaps to a new level of acceptance that I have developed since being diagnosed with a neurological condition.

Acceptance which allows me to live alongside my condition and its accompanying symptoms instead of running away and avoiding those situations that trigger the onset of my symptoms.
Now that I faced that of what I was avoiding, I am determined to go again and again and recapture my love of cinema and film.  I am taking back control of my life, playing by my rules and not that of the neurological condition I live with, but which doesn’t have me.

[Tweet “Chronic Illness is something that I live with, but which doesn’t have me.”]

I hope that you too find the strength and courage to face something that you might have stopped doing.

I know you can do it!
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As I have been enervated by symptoms, almost leading to the feeling of being trapped in a prison surrounded by invisible tormentors.

However, I was not only trapped inside my own body; a metaphorical prison whilst enduring persistent and unrelenting symptoms but these were also keeping me inside my home due to their severity as well as the fear of the possibility suffering another fall in public.  It was as if the symptoms were acting as prison guards, keeping me imprisoned in my home and the same four walls in which I already spent the majority of my time, to begin with.  I longed for adventure, to experience activity and excitement, like the characters in the books that had become my constant companion as I convalesced in my bedroom.

Adventure. Spontaneity.  Two words that are not synonymous with life with a neurological condition.  Going on an adventure when living with any chronic illness requires planning with almost military precision, and is reliant on a number of factors such as how you are feeling on the day that has been set out for the planned adventure.

Personally, for me, big adventures are also dependent on whether or not my legs are being cooperative on the day, and if they are somewhat weak and the wheelchair is needed then it needs to be a mild dizzy day so the motion sickness does not present itself!  Spontaneity is near possible when living with a chronic illness!

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During a short reprieve from my condition and its accompanying symptoms, I made the decision to make a trip to Hay-on-Wye with my carer on a sunny afternoon in late May.  I say that it was a reprieve, but the symptoms were very much there but the severity of them was not as bad as it had been, so it did feel somewhat of a reprieve but at this point it felt that my condition and its symptoms had been very much in the driving seat dictating everything, from how I was feeling to what I could and could not do and I, was tired.   I was ready to finally take back control and be the one in the driving seat instead of being the passenger on my own ride.

Hay-On-Wye is a small market town located in Powys, West Wales is a place that I had been before, but have desperately wanting to return to since.  It’s most famous as being the town of books with an impressive number of bookshops adorning the streets of the quaint little town.  As a massive bookworm myself, this beautiful place is like a little piece of heaven for me, and I was really excited to make a return to this mecca of literature.

The many wonderful bookshops of Hay-on-Wye
The many wonderful bookshops of Hay-on-Wye

The day itself was beautiful with majestic blue skies with a warm gentle breeze.  It was a beautiful start, the only problem being my extremely trembling legs, as unfortunately the place being somewhat unsuitable for a wheelchair, meant that I had to rely on what felt like incredibly unreliable legs.  But even that wasn’t going to stop me as somehow despite how tough things have been, I finally found my sparkle again.  And despite wobbly legs, several near falls and major fatigue I had a great time in this wonderful little town.  I  was able to browse the many quaint and unique bookshops, treated myself to lunch and just sat down and soaked in the sights and a little vitamin D.  It was a great day; probably the best I’ve experienced for a long while.

Above all, I learned just how much control I allowed my condition to have on my life, yes, some of this was because I had no physical control over this such as the severe weakness and trembling in my legs.  However, I let myself believe that because of the severe symptoms I was not able to do anything at all.  I thought this was my reality, when in fact it was only my perception of the situation.  On the day I discovered determination and strength I never knew I possessed. It felt like pain had my legs trapped in its vice-like grip, but determined to seek out lots of books, I carried on.

Yes, my legs were weak and uncooperative, ready to give way in a blink of an eye, but there are plenty of ways to still an enjoy a day out.  The use of a wheelchair, for example, or by taking regular breaks as we did in Hay (and the perfect excuse to enjoy a hot chocolate!). We may not be able to enjoy a long day out, or a day out like we used to but with appropriate accommodations, we can still enjoy a day out somewhere special.  Are there any perceptions regarding your condition that you think to be a reality?

Admittedly, I perhaps overdone things that day given the fatigue and amount of pain I experienced days after but even that cannot tarnish the memories and the experience of the day.  And above all, it felt brilliant to be back in the car, even if I’m not always in control…

Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, a functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder, however, shows no signs of structural abnormalities but is rather a problem with how the brain functions.

It is a problem with how the brain is sending or receiving messages.

If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however, there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.

As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.

And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger to having been through it several times before.  I am not sure how I feel about this, initially, I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially skeptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences, however, I have learned that even after getting a label, diagnosis is not the end of the story…

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