neurological disorder Archives

In Chronic Illness

Celebrating Birthdays With Chronic Illness

March 8, 2019 17 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. Because March is also the month where my birthday falls, I thought I would use this month’s prompts to discuss the impact of celebrating birthdays when living with chronic illness.

Failing at Life Because of Illness

Failing: Noun. An act or instance of failing; failure.
2. A defect or fault; shortcoming; weakness

March is a busy month in the household, with both my Mum and I celebrating birthdays during these thirty one days.

Like many living with a chronic illness, birthdays, although as much as they are often enjoyable they can also prove to be bittersweet.

"When living with chronic illness, birthdays can be bittersweet as it is a reminder that we have lost another year to it." Click To Tweet

Birthdays can be a time of reflection. To reflect on the year since we celebrated our last birthday. And reflecting on life, that we have led since our birth, and the life we thought we thought we would have had. As such, it is often a painful reminder that we have lost yet another year to chronic illness.

Living with chronic illness it can feel as though time has frozen; our lives stuck on pause when everything moves fast and everyone’s lives continue unheeded

Chronic illness is like a kidnapper, holding you hostage, unable to escape. It forces you into isolation, with limited access to the outside world. Time has frozen, and our lives are stuck on pause while the outside world moves fast and everyone else’s life continues unsilenced and unaffected by illness’s grip.

"Time can often feel it's frozen. That our lives are stuck on pause while the outside world moves fast, and everyone else's lives continue unsilenced and unaffected by chronic illness." Click To Tweet

As such, we can believe that we are failing. It feels like we are failing; that we are a failure because of everything we are unable to do and failing because of the lack of independence and the need to be reliant on others.

Our minds falsely makes us believe that we are failures; that we are somehow less than because of the debilitating effects of chronic illness.

Succeeding Past The Limitations of Chronic Illness

Succeeding: Verb. To thrive, prosper, grow, or the like
2. To come next after something else in an order or series

However, perhaps we need to change how we view our circumstances.

Instead, of regarding birthdays as a reminder of what we have lost because of chronic illness, perhaps we need to celebrate another year of surviving. That we are succeeding despite the limitations that chronic illness enforces on us.

To acknowledge the successes and everything that we haven’t lost because of our conditions. Often the progress seen when living with chronic illness is slow and can often feel as if we are not making any progress at all.

"We are succeeding over pain and illness whenever we triumph over the limitations they impose upon our life. We are taking control back from chronic illness whenever we achieve anything despite the constraints they inflict." Click To Tweet

But the truth is, we are succeeding over pain and illness whenever we triumph over the limitations they impose on our lives. Whenever we achieve anything despite the constraints that it inflicts we are taking back control chronic illness already has.

Whenever we triumph over the many hurdles blocking our path because of the symptoms of chronic illness we are succeeding despite it

We are succeeding when we decide to make the most of the life we have now instead of wishing we were well, or waiting until we are well until we start to live life again.

This year I succeeded over the neurological condition I was diagnosed with by going on another cruise, making the most of it despite debilitating and excruciating pain. Also, I overcame the anxiety and apprehension that the condition can cause to book a trip to the Harry Potter Studio Tour in London. At times, both were extremely difficult but was proof that I was living my life despite my diagnosis and was stronger than the hold it has over me.

Pausing and Reflecting on Life and on Getting Older

Pausing: Noun. A temporary stop or rest, especially in speech or action
2. A cessation of activity because of doubt or uncertainty

Taking a breath and reflecting on my life, it feels like life is pausing. On hold. It is although life is still the same as it was when I last celebrated my last birthday.

Still, I am persecuted by the same symptoms as last year: no improvement and no progression in other areas in my life. Another year passing, and so does the hope of recovering. When living with chronic illness, it often feels that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant. I desperately want to take back life away from pain and illness. Instead, I feel stuck and disheartened.

"It can often feel that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant." Click To Tweet

woman staring out of a window — Birthdays give an opportunity to pause and reflect on our lives and to the future. Doing so, when living with chronic illness, however, it can often be met with anxiety and apprehension due to the many unknowns

When I pause and look toward the future, I do so with a sense of anxiety and apprehension. I fear whether there will be further deteriorations in the symptoms and my condition that will further erode the little independence I have currently. Wondering what life will look like, often wishing that I sometimes could see it in a crystal ball but worry what I will witness if I do.

"When I look to the future, I do so with anxiety and apprehension. I fear there will be further deteriorations in the symptoms I experience and that they will further erode the little independence I have currently." Click To Tweet

I try and not to dwell on the what ifs, however, and instead try and pause and appreciate on what I do have. To give thanks to loving and supportive parents, that do so much but ask for little in return. The friends in my life both in real life and those I have met online. To welcome and acknowledge the beautiful and heartfelt messages of support and thanks on my blog, and to recognise the impact my words has had on those who have read them.

Deciding on A Path To Celebrate

Deciding: Verb. To solve or conclude by giving victory to one side
2. To determine or settle (something in dispute or doubt)

As I sit in my bedroom, currently disabled by pain and weakness in my legs, and thus affecting my mobility, I am deciding on how to celebrate my birthday next week.

It is hard as anyone living with an unpredictable health condition will know, planning can prove to be extremely problematic. What will tomorrow look like for us?

"I am deciding how to celebrate my birthday…When living with a never-ending condition; however, it can be problematic as we have no idea what tomorrow will look like for us." Click To Tweet

How will I feel on the morning of my birthday? Will the pain, fatigue and mobility problems be kind enough to me to allow me to celebrate as planned?

There are often many different paths we can take when living with pain and illness, and it can often be difficult to decide which to take

These are the questions that we are silently asking in our minds, but have no answers. There are no crystal balls that we can consult to help us decide on a particular path. If I were to browse my diary, so far most of the entries recorded are marked with a question mark. It is a symbol of the many unknowns of life with a never-ending illness.

"In my diary, many of its entries are recorded with a question mark. It is a symbol of the many unknowns of life with a never-ending illness, including our future capabilities." Click To Tweet

It’s not only my birthday that falls during March. My Mum also has her birthday this month, and Mother’s Day also occurs in March. As a result, I am deciding not only what to buy as presents for both these occasions, but also how am I going to buy them. Do I currently have the energy and sufficient mobility to walk around and browse many shops? Or should I forego physically visiting stores and take advantage of the many benefits of online shopping?

Thriving and Not Just Surviving Life with Chronic Illness

Thriving: Verb. To prosper; be fortunate or successful
2. To grow or develop vigorously; flourish

When going through a flare, or incapacitating troubles associated with chronic illness, it can often feel that every day we are merely surviving. But we don’t want to endure; we want to thrive despite the numerous limitations that chronic illness brings with it.

"We don't want to endure and survive; life with chronic illness. We want to thrive despite the numerous limitations that they bring with it." Click To Tweet

But perhaps it only feels that we are merely surviving. Perhaps our minds are deceiving us to make us believe we are just surviving. Maybe we are thriving despite what we are led to believe. We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.

"However, we are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality." Click To Tweet

To thrive sometimes involves letting go of what we cannot control, and only worrying about the battles that we have a chance of winning. Thriving is celebrating the even smallest of accomplishments, and appreciating the sheer effort and courage it took to achieve them.

To thrive with a chronic illness means that we have to let go of everything that we are unable to control and only worrying about those battles that we can win.

To grow and succeed is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain.

"To thrive is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain." Click To Tweet

I am continuing to thrive despite all of the limitations and difficulties that this neurological disorder places in my path. On this birthday I will take the opportunity to reflect on everything I’ve done despite constant and debilitating symptoms. I will celebrate making it to another year. And although this is not the life that I had imagined for myself, I am determined to embrace and celebrate the life I do have.

In Chronic Pain

Seeking Joy in The Midst of Chronic Pain

February 2, 2019 7 Comments

If I were asked to sum up my current life in just one word, then there is only one word I could conjure which would adequately describe it. Pain.

From the moment I wake up, and until I (finally) fall asleep, all I can feel is the pain that assaults my body. The pain has become the bookends of my days. My entire life and existence becoming defined by its tight grip. It is all-encompassing. There are no aspects of life that the pain leaves untouched. And it’s become the strongest voice in my life.

"Pain becomes all-encompassing. It leaves no aspect of our bodies or lives untouched and becomes the strongest voice in our lives." Click To Tweet

The pain is like a kidnapper. It enforces you into a cage, you an innocent victim and the pain as your captor. It isolates you and robs you of your already fragile independence. Every step sends a jolt of debilitating pain throughout my spine and legs. It prevents you from venturing too far, shackling you to the house.

Chronic pain is the biggest thief. It steals your independence, your plans, your sleep…it steals your life.

"Pain is like a kidnapper. Enforcing you into a cage, and you as it's innocent captor. It isolates and robs you of your already fragile independence." Click To Tweet

As the days of crippling pain increase, so does the shade of the dark circles under my eyes, thanks to insomnia that develops as a result. Along with the dark circles, my eyes are red from all the tears shed as a result of the excruciating pain and the subsequent lack of sleep. Days in which my existence is more concerned with survival, clinging onto the edge of a cliff by my fingertips and grasping on until the time I can take the next dose of painkillers — medication which only dulls the pain. But, when the pain is at it’s worse, we will accept any relief we can get.

It can be difficult to feel happy or joy during a relentless pain flare. The unpredictable nature of the beast; not knowing when the next incapacitating pain will strike. I could be feeling great one minute and overwhelmed with immense pain the next. It is hard to find joy while trapped in a life that you didn’t want or ask for, and one in which you are unable to escape.

"It is hard to find joy when trapped in a life that you didn't want or ask for, and one in which you are unable to escape." Click To Tweet

Living with constant and unrelenting pain is much like living under a permanent dark cloud. Feelings of joy, happiness, and contentment feel like they are so out of reach. But when these feelings go on for so long, we realise that this has to change. With the realisation that the pain is forever so, we have to find happiness for ourselves. To allow a slither of light between the dark clouds, and welcome some light within the darkness.

When we realise that pain is forever so does the realisation that we need to search for joy within it.

"With the realisation that pain is forever, we so to understand that we have to search for joy within it ourselves." Click To Tweet

For some, it sounds counter-intuitive; the idea that a person can feel such pain but can also feel happiness at the same time. How can that be so? It’s difficult yes, it’s not about denying the existence of pain but acknowledging and accepting it. Accepting the pain and illness as permanent companions limit the power they have over our thoughts and emotions. I can accept I am in pain and the unfairness of it, but also not allow the agony to stop me from welcoming positivity and joy in my thoughts.

I have experienced many incredible moments while being in a great deal of pain. Moments such as travelling, for example. My last encounter with travel was also one in which I was suffering a torrent of agony. It failed to stop me however from appreciating the awe-inspiring scenery before my eyes.

Travelling is one such pursuit that makes you fully appreciate the real magic and beauty of the world outside our immediate surroundings. But much more, it allows us to venture beyond our everyday life. Beyond our lives with chronic pain. It’s a beautiful reminder that there is so much more to life than pain. More to our lives, and more which defines us beyond pain and illness, something which can be difficult to remember while in the midst of such devastation. It provides the opportunity to steal time back from the horrible thief that is chronic pain.

"Seeing the world reminds us that there is more beyond pain and illness. It provides the opportunity to steal time back from the horrible thief that is chronic pain." Click To Tweet

The amazing scenery that I’ve seen as a result of my travels. Joyful and happy memories that they evoke despite the recollections of the pain and illness that threatened to blight the trips.

While experiencing such desolation during the everyday, mundane days of our lives, however, it can be difficult to find and appreciate moments of joy. When the pain is piercing, it is only by observing that for which you are grateful for is often the only thread of hope to grip tight. And without hope, we would not be able to see a way through the pain and the myriad of other symptoms that accompany it.

"When the pain is piercing, it is only by observing that for which you are grateful for is often the only thread of hope to hold onto – without hope we would not be able to see a way through." Click To Tweet

Allwoing a small moment for gratitude and positivity with the The Happiest Gratitude Journal from The Itty Bitty Book Co: https://ittybittybookco.com/products/the-happiest-gratitude-journal

Joy is the smooth and creamy taste of chocolate on the tongue. Happiness is wrapped up beneath a warm blanket with a superb book. There is a pleasure to be found with a binge-watch of a favourite television box set. Or a movie marathon beneath a comforting blanket or duvet. Enjoyment is the distraction from pain and illness with an expedition outside the house. It’s the enjoyment of a warm and satisfying mug of hot chocolate in a favourite haunt.

Joy is an unexpected phone call or text from a good friend. It’s an acknowledgment that we are loved and we’ve not forgotten while the pain has shackled us to a sick bed.

Positive and uplifting quotes can help us find joy within our lives with chronic pain. — We can find joy even in the midst of pain and illness but only if we do our best to search for them.

There are moments of happiness and joy amidst the destruction and devastation of chronic pain. The sun can prevail amongst the dark, thunderous storm clouds allowing light to banish the darkness that exists.

"There can be moments of happiness and joy amidst the devastation of chronic pain. The sun can prevail amongst the dark, storm clouds allowing light to banish the darkness that exists." Click To Tweet

If pain is making its destructive presence known in your life, I hope you can find moments of joy regardless. And I hope that you are able to banish the clouds and the subsequent darkness with light and hope.

You are not alone.

In Chronic Illness

Embracing The Warrior Inside

December 29, 2018 13 Comments

What does it mean to be a warrior?

What images evoke when you think of the word warrior?

Warrior (noun)
1. a person engaged or experienced in warfare; soldier.
2. a person who shows or has shown great vigor, courage, or aggressiveness

For many, when we think of a warrior, an image of a soldier may come to mind. A brave man or woman, in uniform going to war on a battleground far away. Or those courageous men and women working on the front line in the emergency services. Those who run toward danger when many more run far away from it.

soldiers fighting on the front line in war. What we often think when we hear the term warrior — Soldiers fighting on the front line during a war is a classic depiction, and one most people think of when we think of the word ‘warrior’

An image that may not cross one’s mind is one of a person living with a chronic illness.

However, words such as warrior, fight, battle, and war have become synonymous in discussions regarding illness and those living with, such conditions. We’re brave in the face of life with a long-term health condition. And we approach the unknown of everyday life with courage, fighting for a semblance of a life.

"When we think of a warrior, we think of those who run toward danger. An image that may not come to mind is that of someone living with a chronic illness." Click To Tweet

It has become a somewhat controversial subject within the chronic illness community, and which has inspired much debate.

The Problem with Words Such As Fighter, Battle and Warrior

Some reject these warlike rhetoric connotations of illness and those who live with them. For many, their conditions are a part of them. A part of them much like the colour of their eyes or the freckles on their skin. To fight the disease, therefore, is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming.

"To fight the disease is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming." Click To Tweet

We don’t think of ourselves are brave, courageous or strong when living with a long-term health condition. But we are, and often it’s because of circumstances beyond our control. Often, we are strong because we have to be.

Further, many argue that words such as ‘fight,’ ‘battle’ or ‘war’ are polarising, suggesting that much like their literal meanings, there is a winner and loser. It suggests that if we succumb to the debilitating and often devastating symptoms, it’s because we haven’t fought hard enough. Furthermore, it implies blame upon the person afflicted by the illness.

People voice platitudes such as ‘brave’ to describe our struggles. Although it’s often in an attempt to be supportive, it instead feels patronising, much like being patted on the head like when we were young by distant relatives. In truth, however, we feel far from brave or a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms.

"We feel far from being brave or being a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms." Click To Tweet

Are We Warriors?

To us, we are not brave, we fight and survive, not because we are fighters or warriors, but because we have no real alternative.

View this post on Instagram

Wearing my new #necklace today with pride! It reads #warrior which is a word which is controversial in the #chronicillness community with many who do not like or use the word in relation to living with a chronic illness. For many living with illness is not a fight or a war. But recently with the debilitating trembling in the legs, and #chronicpain just getting up every day and doing anything, especially taking up #aeropilates again is a fight. Fighting with my legs and fatigue just to get up and out of bed. Fighting with my legs to stop them from giving way. Fighting for a semblance of a normal life. So yes, living with this neurological disorder often feels like a war and still I am here fighting. I am a #warrior #spoonie #chronicpain #chronicallyawesome #chronicallyillwarrior #chronicillnesswarrior #chronicpainwarrior #jewellery #mantra #chronicillnesslife #chroniclife #FND #neurologicaldisorder #functionalneurologicaldisorder

A post shared by Rhiann Johns (@serenebutterfly) on Nov 15, 2018 at 3:53am PST

After experiencing a prolonged and a crippling flare, however, I am starting to embrace and appreciate the title of being a warrior. Even more so, after a recent trip to the Harry Potter Studio Tour which proved to exacerbate the symptoms.

It was further evidence that I am not normal. That I never will be healthy. I’m in constant pain, constantly dizzy, and a continual trembling sensation consumes my legs. My life consists of numerous falls, many days where I struggle to get out of bed, and plentiful occasions whereby my legs collapse unexpectedly.

Embracing The Warrior Inside

On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality. We are all fighting in ways that only other warriors can understand. We fight to be able to get out of bed in the mornings, struggle through the days, impeded by pain and fatigue. Fight to be able to get out of the house, and fight to be able to complete the errands that await.

"No, we are not fighting in a war. But we are fighting for our lives; fighting for some semblance of normality." Click To Tweet

Yes, there are days when we are defeated — days when the pain, fatigue and the multitude of other symptoms win the battle on a given day. But still, we do not give up. We may not be able to try again tomorrow, but we don’t surrender to the demon that is our illness. Symptoms such as the dizziness and vertigo make it difficult for me to be able to cope with particular places, but still, I have refused to submit to their hold on my life.

Woman carefree and happy existance — We are warriors as we never give up, never surrender and are continually picking ourselves up and trying again

And as much as we fear the symptoms becoming victorious, and becoming defeated by our silent enemies, we never stop trying. We never give up. I am not suggesting that I am a brave or courageous person merely by living with an enduring neurological condition. Being fierce, brave or a warrior does not make you any more likely to beat the disease or the illness that is ravaging inside your body.

The Comfort that Being A Warrior Has

It does, however, help you get through the difficult times. It helps you survive when it seems that you can no longer bear the pain any longer. I attempt those places that provoke such attacks, and sometimes I am unsuccessful, but still, I try again. It brings comfort, the knowledge that if we are fighting against the impact, the condition has, then we are in control and not that which afflicts us. And that is why I bought the necklace. It is a reminder of the many victories I have achieved despite the limitations imposed due to my various symptoms. It is a constant reminder of my strength in the face of illness.

"My warrior necklace is a reminder of the many victories I have achieved despite the limitations imposed by my symptoms. It is a constant reminder of my strength in the face of illness." Click To Tweet

However, it is a motivator. Life with a neurological condition presents a series of challenges to overcome. If we are to prescribe the ‘fight’ metaphor to life with an illness, it can give both direction and motivation. If winning is the ultimate objective, then striving for a triumph over adversity can provide us with the drive to wake up each new day and live with the presence of such monotonous symptoms all over again.

And that is what we do every day. We fight to live. We are warriors.

In Chronic Illness

It’s Beginning To Feel A Lot Like Christmas

December 8, 2018 5 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. I’ve decided to take part in this month’s Link Up Party, using the prompts to describe the run-up to Christmas from the viewpoint of someone living with a neurological condition.

De-Stressing

De-stressing: Verb. To become or cause to become less stressed or anxious

The holiday season is among us. A time for celebration, rejoicing spending time with loved ones, and giving and receiving with those who matter.

However, the season, for many is also a time of stress and anxiety.

The worry of finding the perfect present for our near and dear. The growing list of tasks to prepare for the big day as well as the fatigue from this season’s various obligations.

Chronic illness presents numerous limitations that can challenge our ability to enjoy and participate in the season’s festivities. It is therefore vital to find ways to de-stress to help us survive and enjoy the most wonderful time of the year.

Chronic Illness presents numerous limitations that can challenge our abilities to enjoy and participate in the season's festivities. Click To Tweet

the advantages of online shopping for destressing during Christmas preparations — Who wants to be laden down with lots of heavy shopping bags when we can take advantage of online shopping. For those with chronic conditions it makes life much easier as it doesn’t affect our already limited mobility

For me, one way I have been doing this is taking advantage of online shopping. Recently I have been struggling with my mobility, and the thought of traipsing around shops searching for that perfect gift fills me with dread. So, my Christmas shopping adventure has been virtual, taking advantage of online offers and discounts. And all done in the comfort of my own home, wearing comfortable pyjamas and without the worry of falling over!

As much as Christmas is a season about giving to others, it is also essential to ensure we take time for ourselves as well. To seek time for self-care and those practices that provide enjoyment and the chance to unwind from the stress.

It's Beginning To Feel A Lot Like Christmas

To de-stress it’s important to be fulfilled with the festivities that we can enjoy. Instead of being disappointed in the fun and games, we cannot take part in during this season of merriment.

Savouring

Savouring: Verb. To enjoy food or an experience slowly, in order to enjoy it as much as possible

In the mornings, dark, dreary and very often extremely wet weather greets me as I look outside my window. Everything seems dreadful and depressing. Unfortunately, my mobility limits my ability to go out regularly, and particularly at night when my balance worsens. Therefore, when I do have a rare opportunity to venture out at night, I savour taking delight in observing the beautiful Christmas lights and vibrant decorations that adorn shops and houses. The twinkling lights and festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights.

Twinkling lights and beautiful festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights. Click To Tweet

One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights

I will also savour the opportunities for spending time with close family and friends, especially those who I am unable to spend much time with during the rest of the year because of a lack of time or the great distance between us. To savour the time spent with those who appreciate my company and who makes me comfortable to be myself. Those who see me as a person, and not merely as a sick person.

One of the things I love most about Christmas is that there is so much to savour during the season. The joviality, the delicious and inviting food of which is plenty and the many moments of spent with loved ones which are more prevalent than any other time of the year.

Simplifying

Simplifying: Verb. To make something less complicated and therefore easier to do or understand

As previously mentioned, this year I am simplifying my Christmas preparations and taking advantage of online shopping. For someone with limited mobility and suffering from intense fatigue, it makes it easier to search and buy that perfect gift for that special someone. Very often, it allows the opportunity to send the gift directly to the participant, simplifying the giving process for those who are housebound or cannot stand in the long queues at the Post Office.

The decorating of the house has also become simplified since my symptoms have worsened. Instead of the long process of assembling the artificial tree, and adorning the tree with tinsel, twinkling lights and festive decorations, we have since invested in a fibre optic tree. This takes the time out of decorating and therefore lessens the fatigue that it usually leaves in its wake.

Resting

Resting: Verb. To stop doing an activity or stop being active for a period of time in order to relax and get back your strength

With so much to do and preparations to organise before Christmas Day arrives, rest is vital for recuperating.

When living with a chronic illness, we often do this by pacing for and during each activity. For example, if I am going out, I limit the amount of activity I do beforehand to ensure I have enough energy in my limited supply to do everything that I need to do. And when I am out, I am careful to limit the amount of the time that I am out and also to consider the amount of energy I am exhausting.

Resting activities needn’t be boring. When out and feel my legs becoming fatigued and shaky, I have been enjoying much-needed rest spent in warm and cosy coffee shops enjoying the latest book I have on the go. It also provides the perfect excuse to wrap up with a snug blanket in front of a cheesy Christmas film. Or indulging with a favourite Christmas classic. Miracle on 34th Street anyone?

Been very much anticipating the new @jodipicoult book #ASparkOfLight for ages!! Can’t wait to get stuck in with a mug of hot chocolate in one of my favourite coffee shops. A lovely way to spend a wet and miserable Thursday morning! pic.twitter.com/L52cGbMo49
— Rhiann Johns (@serenebutterfly) November 8, 2018

Finalising

Finalising: Verb. To make a final and certain decision about a plan, date, etc

At the moment I am finalising the last of the presents I have to buy. One last gift for my Dad. I like to ensure that I spend the same amount on both my parents. They both equally do so much to take care of me, that I make sure that I don’t favour one person over the other. And so far, I have spent more on Mum so need to find one more for my wonderful Dad. But that’s the question. What do you buy a man who has everything? So if anyone has any suggestions, let me know!

Due to the many obstacles that symptoms create, I tend not to make plans as they often inevitably ends with disappointment when they don’t materialise. Especially as of late when my symptoms have been particularly severe. So perhaps I need to finalise plans for the new year on how to emotionally deal with these setbacks. And to get into a better place in regards to my health.

Maybe we all need to learn to simplify, rest, savour and de-stress for the whole year round instead of focusing on these during the most special times of the year, such as Christmas.

We need to learn to simplify, rest, savour and de-stress the whole year round instead for just during Christmas Click To Tweet

I have no idea what this Christmas will entail, but I hope it is a happy one. And I hope the same for you all too.

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?