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In Chronic Illness

Exploring The World of Harry Potter

December 4, 2018 2 Comments

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?

In Chronic Illness

A Month of Life & Chronic Illness

February 19, 2018 No Comments

After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’

The prompts for this month are:

Adapting
Practicing
Realising
Celebrating
Inviting

Here we go…

After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms. But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.

I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you. But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition. Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.

pexels-photo-461775 — Acceptance is a journey and not the destination.

In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years. Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms. I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.

In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy. The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.

Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life. It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.

pexels-photo-226718 — The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain. Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances. When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition. But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.

And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings. But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!). It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.

It is little victories like the theatre trip which I am celebrating this month. It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives. Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration. I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.

pexels-photo-341858 — Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

To end, I think I would like to invite more opportunity into my life. Perhaps, by expanding my writing beyond the blog. Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know! Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle. Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know. But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.

In Chronic Illness

August 2017 Linkup Party with A Chronic Voice: Missing, Appreciating, Striving, Releasing, Eating

August 21, 2017 No Comments

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.

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.

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.

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!

In Chronic Illness

Living With The Darkness

April 26, 2017 No Comments

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.

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.

c5703dcbfddf393974e048060390e296 — 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.

2c60798b3b7346bd559d111f6eb38f7d — “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:

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.

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!

In Chronic Illness

Walking Through Life with Shaking Legs…

October 26, 2016 No Comments

Recently I have been reading many blogs written by others who also live with chronic illness. In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result, I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.

If someone had asked me a few years ago what was my worst symptom, then I undoubtedly would have replied with “the constant and unrelenting dizziness.” The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick. The dizziness can be so severe that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.

Now, however, I would have to admit that the trembling in the legs has become my most troublesome symptom. Like the dizziness, the trembling is constant, unrelenting and has become life-altering. The severity of it does vary from day-to-day, sometimes minute by minute.

Life has become increasingly unpredictable.

This morning, I woke up at around 8.30. Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable of standing or even to walk and therefore had to remain in bed until the trembling subsided. It did after half an hour or so and was able to get up and start the day ahead. This is unfortunately not uncommon, and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.

It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day. Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.

[Tweet “Life has become increasingly unpredictable.”]

Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating. So what makes the trembling my worst symptom?

It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs. Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.

It’s the same with the neuropathic pain caused by my neurological condition. Yes, for the most part, the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it. Also, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure. But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom, and not even distraction techniques help to take my mind off the sensation.

The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life. Such as the amazing support that my friends and family show me every day. Living with chronic illness can be messy and complicated, but I choose to believe that there are still plenty of silver linings to be found.

[Tweet “Living with chronic illness can be complicated, but silver linings can still be found. “]

So, tell me what is the worst symptom that you live with?

Feel free to comment below!

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About Me

A personal account of living with a neurological condition, including FND. I write about issues surrounding chronic illness, chronic pain and disability. Outside of being sick, I am an avid reader and love films and TV!

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