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A Chronically (Ill) Induced Boxset Binge

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For the past few weeks, I have unfortunately been experiencing a severe flare in symptoms.  Although the symptoms I live with are constant, however, I experience blocks of time in which these symptoms worsen causing much pain and suffering.

Pain, trembling, dizziness and especially fatigue have all been particularly acute of late.  Often I have been unable to do much at all, with the pain and trembling in the legs shackling me to my bed due to difficulties with getting around, even in the house.  Crippling fatigue has also confined me to rest in bed on numerous occasions especially after being out of the house or doing chores around the house.

And it’s in these moments, being incapacitated by the illness that I am unable to do much more than just lie on my bed and entertain myself with a light or comforting book.  But more often than not, however, I have been distracting my mind from the pain and other symptoms with a box-set binge of one of my favourite television programmes.

[Tweet “These are my favourite boxsets to binge-watch when the pain and other symptoms are at their worst.”]

In this post, I thought I would share some of my favourite box sets that have recently helped me into a chronically (ill) induced boxset binge.

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Bones
Anyone who knows me will know that I am a huge fan of procedural crime dramas, and Bones has to be one of my all-time favourite shows in this genre.
‘Bones’ centres around the relationship between forensic anthropologist Dr. Temperence Brennan and Special Agent Seeley Booth of the FBI whom together combine their skill and expertise to solve murders using evidence recovered from dead bodies.

“Bones” is the nickname given to Dr. Brennan who heads up the team of forensic scientists of the Jeffersonian Institue (based upon the real-life Smithsonian Institue).  As the show is based on the character created by real-life forensic anthropologist Kathy Reichs (and who is also an executive producer on the TV series) the science and techniques used adds to the show’s realism and authenticity.  Alongside murder inquiries, the show also explores the relationships and private lives of the characters.

Not only is the science of the show interesting and compelling but the writers of the show beautifully write engaging and relatable characters whom you can’t help but fall in love with, especially the show’s protagonist ‘Bones’ whose directness and clumsy demeanor makes her both hilarious and endearing to watch.  Also, what I love about the show is its ability to inject humour seamlessly alongside the horror and gore of its depictions of its murders and dead bodies.
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Blindspot
“Jane Doe” wakes up stuffed inside a duffel bag in the middle of Times Square, naked, unaware of her own identity and covered in strange tattoos covering most of her body.  And it’s this enigmatic twist that makes it so different from any other police drama before or since.

The FBI, headed by Special Agent Kurt Weller, whose name also appears on the back of this mysterious tattooed woman, realises the tattoos are much like a treasure map and when decoded reveals clues to crimes and instances of government corruption.  Also while trying to discover Jane Doe’s real identity, and who sent her to the FBI and why.

If you love dramas that make you think, then this is one to put on your list.  Once you start to watch you cannot help be instantly intrigued with these beautiful and ornate and tattoos as well as the methods used to uncover the messages behind them.  As the series develops, the momentum builds closer towards a shocking and dramatic conclusion, raising more questions than it actually answered, and brilliantly introducing new avenues for future series to explore.  Everything about this series really impressed me, but the standout performance came from Jaimie Alexander as ‘Jane Doe’ who although excelled at the action stunts it was the vulnerability she showed portraying a woman whose entire identity had been erased that made it such a compelling watch.  A series I could happily watch again and again!

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Strike Back
I wouldn’t say that I am a huge fan of action dramas, but Strike Back has to be the one exception and one I can happily watch over and over again.  I’ve even been known to have come to the end of the entire series of the show and then immediately go back and watch it all over again.  The original series of Strike Back was adapted from a novel written by former soldier Chris Ryan and starred Richard Armitage.  John Porter is a disgraced soldier recruited by a secret branch of the British military to travel around the globe in the attempt to stop major global threats while his boss does his best to cover up a mistake from his past.

It was a solid series, however, Strike Back really came into its own during its second outing with the introduction of soldiers, Sgt Scott and Sgt Stonebridge, two leads who share amazing chemistry, and rival any of the best television or film comedy duos. They are engaging, and a delight to watch, and the banter they share is really what makes the show so fun and entertaining.  The one-liners between the two are hilarious, and as it’s a show I watch so of, I am even able to quote them!  But be warned, throughout all of the series there are many instances of explicit language as well as gratuitous sex and nudity.  Certainly not something I will watch in front of my Dad!

But what also makes the show so brilliant is the high octane drama and action.  The stunts are both impressive, and looks incredibly realistic and what the show will be most remembered for.  Although the action is what mainly drives the show, I also enjoyed the emotionally driven storylines, examining the tortured psyches of the soldiers and the moral quandaries that they are forced to confront in their line of work.  It was great to love a show that seemed fresh and new at the beginning of each new series, with ever-evolving characters and brilliantly complex storylines, hunting new enemies that threaten not only the UK but it’s political and military allies.  The episodes are so intense and exciting it’s hard not to get carried away and watch several episodes in one sitting!
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Gavin and Stacey
Written by friends Ruth Jones and now very famous James Corden, Gavin and Stacey tell the story of the eponymous characters; one a boy living with his parent in Essex and Stacey, a young woman from Barry, a town not very far from where I live!  They navigate their love affair alongside their best friends Nessa and Smithy, who although they seemingly hate each they keep sharing romantic trysts themselves!
The show is absolutely hilarious, and it never fails to make me belly-laugh no matter how many times I have watched the episodes!  A great box set to watch when feeling down, feeling the effects of living with a neurological condition.

Other Notable Mentions:

Grey’s Anatomy – it’s fun, addictive and beautifully written with strong and relatable characters that despite their flaws you can’t help but love
Criminal Minds – as someone with a psychology degree, I find their abilities to get inside the minds of serial killers fascinating
Ghost Whisperer – Jennifer Love Hewitt is absolutely compelling to watch as reluctant medium Melinda Gordon.  Each episode is so emotional to watch and never feels to leave you with tears in your eyes
Designated Survivor (on Netflix UK) – with elements of 24 and The West Wing, this show is undeniably intriguing and also complicated at times.  Tom Kirkland (played by Keifer Sutherland) on the eve of the State of the  Union becomes the President of the United States after a catastrophic explosion claims the lives of the President and everyone in his line of succession.  It’s absolutely addictive, and all 21 episodes are now immediately at your fingertips making it perfect binge-worthy material.

I always love to discover new box sets to watch on those days which leave me incapacitated by my symptoms so I would love to hear your favourite box sets and any recommendations on what to watch next!

Leave your suggestions in the comments below!

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Lighting the Flame for Invisible Illness

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A friend of mine, a lovely woman whom I connected with through this blog, recently asked me to take part in an awareness campaign to shed light on invisible illnesses and the debilitating effects that they can have on the lives of those affected.

We found each other as we both share a diagnosis of Functional Neurological Disorder (FND).  This is a disorder which is a result of a problem, often of an unknown origin, of the central nervous system whereby the brain fails to send or receive messages correctly. As the brain controls all of our bodily functions, the list of potential symptoms is extensive and no two people with this condition will exhibit the same symptoms.

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Sharing our stories can help break through barriers and shine a light on invisible illness

In many ways, there are many unknowns to this condition, but as I have and continue to experience the symptoms can be wide-ranging and debilitating.  Also in both of our experiences living with such an invisible illness can be difficult and isolating as the effects of such conditions cannot be seen.  As a result, my friend Harmoni Shakti wants to shine a light on these conditions to start new and meaningful conversations between loved ones, friends, colleagues and even strangers.  By doing so, Harmoni hopes that all of us can start to converse, start more meaningful and truthful connections so we can better help each other through the tough times that these illnesses can bring.

Harmoni has therefore asked to help ‘light the flame’ on my own journey of life with a functional neurological disorder and my other neurological conditions to help raise awareness that has already been featured on her social media pages and given me permission to also publish on here my own blog.  Do you live with an invisible illness? Why don’t you also light a flame and share your own story with Harmoni and the rest of the world?  Details to get in touch with Harmoni and all of her social media pages can be found at the bottom of the page.

Imagine growing up never fitting in.

Constantly feeling like you are always on the sidelines.

That’s what life felt like for me growing up.  Experiencing symptoms such as dizziness and weird sensation in the legs which no one else in my peer group seemed to experience.  It set me apart from everyone else. 

Encountering such symptoms and not being able to describe what I was going through sufficiently to the appropriate medical professionals during many appointments over many years.  As a result, I felt incredibly alone and isolated from friends and family. 

It continued for many years, dizziness and pain in my legs following me through secondary school and later university. 

These symptoms and new ones including severe weakness in the legs, often resulting in them giving away on me and me on the ground unable to stand or walk.   Visual disturbances, which I often experienced during childhood and was thought to be related to my short-sightedness were added to the growing list of symptoms that had become my life.  With all of these symptoms, I was and continue to be unable to leave the house unaided because of the symptoms and the effect that it has on my life (i.e., the falls and being unable to get back up, especially as there are no warning signs before it occurs).

And as the symptoms worsened and became constant I felt that I became shackled to them; imprisoned to my home because of persistent and incapacitating symptoms.  Left unable to work or participate in society.

I and my symptoms have stumped all of the doctors and consultants whom I’ve seen over the years; unable to find a name for what I am experiencing.  As a result, I was referred to see a consultant in London.  He concluded after numerous tests and reviewing my extensive medical history that several co-morbid conditions were going on; something that happened at birth or a genetic disorder causing a long-standing neurological condition which resulted in functional symptoms, or a functional neurological condition (FND).

If we think of the brain as a computer, neurological conditions such as MS or Parkinson’s Disease are as a result of a hardware problem (damage to the brain observed by an MRI scan) however often people like me can develop symptoms that have no apparent cause or damage to the brain.  In this instance, there is a software problem in which the brain for some reason fails to send or receive messages correctly.

Functional Neurological Condition, like many others, is invisible.  Living with an invisible illness can be incredibly lonely as no one else can see the pain and other debilitating symptoms.  They think we are just like them and cannot understand the problems that we are experiencing at that particular time.  Others cannot see what we are experiencing which is why we should help shine the light on invisible illnesses and the effects that they can have on the individual.

I am lighting a flame for invisible illness and for those who are affected. 

[Tweet “I am lighting a flame for invisible illness and for those who are affected #lightingtheflame”]

To connect with Harmoni and to help with her mission to shine a light on the effects of invisible illnesses, you can connect with her on her following social media accounts:
Facebook          Twitter          Instagram

You can also share your story by using #lightingtheflame

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A Diagnosis Matters…

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Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.

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Living without a diagnosis is very much like life in the dark

After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark.  You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.”  Then there is the usual carousel of different doctors from different specialties, some you may have seen before but which only yielded more questions.

In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.

Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.

[Tweet “Being undiagnosed leaves us with many unaswered questions and a future of unknowns.”]

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Having a diagnosis means living with many unanswered questions

I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition.  In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.

And this is true, of course.

Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything.  The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed.  Life is really the same regardless of whether or not we have a diagnosis.

But often a diagnosis matters.  Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label.  They provide answers.  Validation.  Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.

[Tweet “A diagnosis matters. It’s more than just a label. They provide answers. Validation.”]

A clinical diagnosis almost acts like a lightsaber against those forces that doubted the existence of the symptoms ruling your body and life.

We need to know exactly what we are dealing with.  To have some idea of what the future holds for us instead of living with unknowns and what ifs.

A diagnosis matters.

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It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill.  Getting a diagnosis can lift a weight off your shoulders

A diagnosis can lead to answers.  It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.

It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition.  A diagnosis matters.

A diagnosis can lead to treatment options where there were none before.  And it’s these treatment options that can provide hope and a chance at a better quality of life.  A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance.  A diagnosis matters.

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Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to

For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms experienced since young childhood, some possibly since birth.  For years, I have seen so many different specialists, sometimes more than once.  Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement.  Years with no name or explanation for what I was experiencing.  Years of disappointment and hopelessness after test after test came back normal.

Last year I was referred to see a specialist neurological consultant in London and which I attended last month.  I admit I went to the appointment with not much expectation, after many years of disappointment I have learned the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.

However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering.  After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.

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Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in

He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing.  Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description.

Could it be that whatever condition I am suffering was determined before I was even born?  That the development of the symptoms was inevitable like me having blue eyes?

Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND.

Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.

Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo.  It is not uncommon for those living with chronic illness to experience more than one condition.  Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once.  Each symptom vying to be the centre of attention.

[Tweet “Our bodies often juggle many symptoms at once.  Each symptom vying to be the centre of attention.”]

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Having one or more diagnoses means juggling many symptoms, all of which compete for attention

In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.

So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope.  Hope that we are one step closer to an explanation for symptoms that have been with since a baby.  Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).

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Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.

I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.

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Self-Care & Happy Distractions

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Living with a long-term health condition is hard.  Every day seems the same with juggling the ordinary daily tasks of life with the many symptoms and other effects that chronic illness imposes on our body.  There are so many demands on our bodies, which is why self-care is so critical to our overall well-being.

Self -care can take many forms.  Relaxing, participating in a favourite activity or hobby or just taking time out to enjoy a luxurious bubble bath are some ways which we can take time for ourselves to rest and unwind from the stresses of life with chronic illness.  And self-care is also important to help elevate your mood and provide a little light and happiness from the darkness that chronic illness can sometimes create. sunblock-skincare-healthy-skin-heart-161608.jpg
I’m writing about a special brand collaboration, which I thought would be beneficial for those like me, living with a chronic illness and finding that it has an adverse impact on their mental health, suffering from stress, anxiety or depression alongside their physical health problems.

The brand in question is called The Distraction Box, started by the lovely Rachael and Samantha.  I did a little Q and A with Rachael, one of the founders behind The Distraction Box about the inspiration behind the company and about self-care.
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  1. Hi Rachael, Why don’t you start by telling us a little bit about yourselves and your business The Distraction Box
    Distraction Box was founded by two female business women, Rachael and Sam.  Rachael was forced to leave her high-flying career in Marketing due to health challenges.  After major spinal surgery, serious complications and a subsequent diagnosis of a further two nasty chronic illnesses, Rachael’s life changed dramatically overnight.  Rachael has to work really hard on her health to participate in life – including her emotional health.  That’s where the business idea came from – passion and personal learnings.
    Sam is a Dr of Physiology who has a particular interest in the effects of stress on our physical health.  Sam has also had to live with depression since the age of 17 so also had to work hard on her emotional health. Both founders share a passion for emotional well-being so we thought we’d make a great team!We launched the business in October 2016 and position ourselves as a well-being subscription box for the mind.  We also have one-off boxes which are great for gifts for loved ones going through hard times.   Our subscription packages are available for those who want to invest in their emotional well-being on a regular basis.  We encourage people to invest in their emotional health and not just their physical health.  We have a monthly, 3 monthly and 6 monthly subscription packages and each can be cancelled at any time and very easily.
  2. Where did the inspiration for The Distraction Box come from?  It’s a great name!  How did you decide upon it?
    I used to be an athlete and had the belief that you could do anything in life, as long as you were prepared to work hard enough, and if your heart desired it.  Then, 6 years ago I had a major health challenge that changed my life.  In a nutshell, I suddenly had physical limitations that meant I had to change my life completely and found myself not being able to do ‘what I wanted when I wanted.’This affected my emotional well-being, and I was struggling to cope with grieving my old self, and the frustrations with my new life.  Thankfully I was offered counselling to help me with my emotions – and I found the courage to embrace it.  This was the start of my journey with coming to terms and accepting what life has thrown at me, and even changing my mindset to help.  During that journey, I joined a health group which focused around teaching people how to live with chronic illness.One of the tools I was taught was how to create distractions from physical pain and/or the emotions that come with living with an illness that affects your everyday.  I created my own Distraction Box filled with items that comforted me, helped ease physical symptoms, or simply cheered me up when I was struggling to remain positive.  I love creating my own Happy Distractions and felt that more of us should create them in our everyday lives.  We all face stress and pressure, but not enough of us take the time to ‘switch off’ or manage overwhelming emotions in a positive way.
  3. How do you decide on the products you select for the boxes?  What are your favourite products that have been inside your lovely boxes?
    Both of the founders spend a lot of time researching the right products that we feel would create happy distractions.  We can’t pick many favourites as we love them all (or they wouldn’t be in the box).  However, we love JustBe Botanicals, Re-Mind notepads and the slate heart of self-love which was featured in our February box.
  4. Self-care is a big deal within the chronic illness community.  What are your favourite ways to relax and unwind?
    I have too many ways! I can’t say a specific favourite, but I do love water.  I’d say visiting the pool – even if it’s for a float to take the edge off my pain, or to go for a swim and build strength, I love it.  I have regular hot baths too and have different bath bombs and oils depending on what mood I’m in.  I also meditate once a day if I can – I love finding out where my mind will take me that day!
  5. What do you hope to achieve with The Distraction Box? We hope to spread a little happiness across the UK and beyond, but with an important message; emotional well-being is just as important as physical health.  Working on the mind is a strength and not a weakness – we are so passionate about that.On a practical note, we are hoping the boxes will raise enough money to set up ‘talkitout’ which will change the way the UK view talking therapy.  Watch this space…

I was sent a box for myself to unveil and review for the blog.

The Distraction Box for March was based on the theme ‘Hibernation to Happiness’ which was essentially all about stepping out of the hibernation period of winter and into the lighter, brighter days of spring. 

The box arrived after a long night of insomnia as a result of chronic pain, so just receiving the box was enough to cheer me up.  Upon opening the box, I was greeted with a little green parcel which contained all of the month’s goodies.

It was beautifully packaged and wrapped with care which made me appreciate receiving it even more.  It felt special like having received a special gift for Christmas or a birthday.  With the goodies was also a little booklet which outlined the theme for the month and a description of all the goodies contained in the month’s subscription box.

One of the first things that I noticed after opening the box was a gorgeous citrus scent from the Beefayre ‘Bee Happy’ Tea Lights that are scented with orange and jasmine essential oils.  It immediately lifted my mood and helped me to relax despite feeling uptight after a night dealing with pain.

One of my favourite ways to relax and unwind in the nights is to read or watch something on my iPad while I light a scented candle and so I really loved receiving these.  And they are natural which is a bonus!
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I have previously mentioned that the recent popular craze of adult colouring is also becoming a favourite form of self-care for me when I am feeling anxious or just need to distract my mind from the all-consuming symptoms.  So, I was ecstatic to receive a mini Mindful Colouring Pad with colouring pencils! They are sweet, and the best thing is that both the colouring pad and pencils are pocket sized – perfect for slipping into a coat pocket or handbag to take out on trips, such as hospital appointments so you can take a little time out from your thoughts or anxiety.
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Also, in the box was Birchall’s Green Tea and Peach Infusion Tea Bags and the BakedIn Gluten-Free Mug Brownie Mix, both ideal for those who are health conscious and want to look after their physical well-being as well as their emotional health.  I’m not gluten intolerant myself, but again the thought of Rachael and Sam for those who may have such intolerances really shows their understanding of such concerns within the chronic illness community.

I love writing handwritten letters to friends or other special people in my life.  And I also love to receive handwritten letters, in my opinion there is nothing better than to receive a thoughtful handwritten letter in the mail and which feel a lot more personal than an email or text message.  Which is one of the reasons why I participate in a project called Spoonie Post whereby every month you send a letter or card to a fellow chronic illness warrior to say hello or to cheer them up during difficult times.  In this month’s box was two cards with envelopes which I will be able to use for this project and brighten someone’s day!
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And finally, and probably my favourite item from this gorgeous and positive box was the Happy Mug (perfect to enjoy the green tea and peach in).  With simple colours, and finished with a rose gold detail it has a beautifully inspiring and positive quote that we should all aspire to every day.  I’m not a big hot drink fan, but I am sure that I will enjoy using this mug during times of self-care in the future.
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I loved this subscription box, and all the little goodies were perfect for taking the time to invest in my emotional well-being and for anyone else also living with the effects of a long-term health condition.  I know in the US and Canada various companies have subscription boxes specifically for those with chronic illnesses, but nothing similar here in the UK  (although The Distraction Box does ship worldwide).  However, I think The Distraction Box has this niche market in the bag and would definitely invest in a box in the future during a bad flare or maybe even buying it as a gift for someone going through a difficult time.

If you would like to try out a one-off Distraction Box or are willing to invest in your emotional well-being and sign up for a monthly subscription for a Distraction Box, then go and visit their website and use my code ‘brainlesionandme’ for a 10% off your first box/subscription and enjoy the benefits of their take on self-care for yourself.
And let us take a look at your enjoyment of your own Distraction Box by using the tag #HappyDistractions!

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Living With The Darkness

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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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