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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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Storms Don’t Last Forever

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A few weeks ago much of the UK was battered by Storm Doris.  High winds and torrential rain affected many areas of the country.

One Thursday after arriving home from a morning out cut short because of the inclement weather; I watched the rain beating against the glass of my bedroom window, observing the dark grey clouds while I lay down on my bed battling the effects of chronic pain ravaging throughout my legs. I lay there wondering if and when this horrible, destructive storm will end.

Waking the next morning, after opening my bedroom curtains, to my surprise and delight I was greeted by beautiful blue skies and glorious sunshine.  It was then I was reminded that storms don’t last forever and that the sun always shines after the rain.
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Furthermore, a realisation occurred to me that it could also be a perfect metaphor for life with chronic illness.  We all will, at some point in our lives, will experience a storm in our lives; a dark point that at the time feels like we’ll never get out of.  But, of course, nothing in life is permanent.  Our experiences and feelings like most things, such as storms are transient, before moving on, and making way for the sun to shine once more.

Of course, the definition of ‘chronic’ is something, usually describing an illness which is persisting for an extended length of time or one which is constantly recurring.  In this sense, living with chronic illness is like permanently living under a storm cloud.  However, although our conditions are permanent, our symptoms can sometimes be transitory, allowing a small piece of sunshine in our days.  It’s like Charlie Chaplin once said, “Nothing is permanent in this wicked world, not even our troubles.”

[Tweet “However, although our conditions are permanent, our symptoms can sometimes be transitory.”]

Symptoms, which are often persistent and loud, can on some days concede, the feelings and their effects being fleeting and mild, letting us have a rare, good day.  Even living with a long-term condition, therefore, doesn’t mean accommodating a permanent storm in our lives.
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Things recently have been difficult, in my own circumstances living with a neurological condition with increased pain and trembling in my legs.   Some days it has been so bad that I wonder how I have managed to get out of bed in the morning.  On the worst days, it has felt like I was living in my own bubble, surrounded by large and dark storm clouds above my head because of the severity of the physical symptoms, I was experiencing and the emotional toll they were having on my well-being.

Despite this, however, I have still found little rays of sunshine throughout my days even through this turbulent times.  Even little things such as enjoying the feel of the sun on my face, especially after spending days inside, or enjoying the taste of my favourite bar of chocolate.  It was also my birthday last week, and although my symptoms did slightly dampen the occasion, it was still so lovely to receive presents, cards, and messages from people who took the time out of their lives to think of little, old me!  These beautiful moments are small reminders that although it may not feel like it at this very moment, that storms indeed do not last forever.  Nothing is permanent, and these thoughts and feelings will not last forever.  This too shall pass.

[Tweet “Nothing is permanent, and these thoughts and feelings will not last forever.  This too shall pass.”]

Sitting here, thinking about the storms that roll in when living with chronic illness reminds me of my favourite quote from the author of one of my all-time favourite books, Louisa May Alcott.  She once famously wrote, “I’m not afraid of storms, for I’m learning how to sail my ship.”
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For me, it’s a truly beautiful reminder that the obstacles, challenges, and difficulties that any of us face during our lives help us build strength and resilience, and ultimately it is these hardships that teach us how we should be living our lives.  For if it were not for storms, we would never learn how to sail our ships; we would never learn the lessons of strength or resilience that helps us through the dark times.  Of course, this is of little use during periods of distress.

[Tweet “The challenges that any of us face during our lives help us build strength and resilience.”]

As I continue experiencing this particular, and the often distressing symptoms that they bring, I will try and continue to remember that storms don’t last forever, and I hope you do too.
Or if not, I hope you find ways to create your own sunshine…
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In Chronic Illness

A Chronic Illness Playlist

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Last week, I wrote a blog post about the power of music and its ability to connect with us on a personal level.  The ability of music and its melody or lyrics to express and convey emotions that we are experiencing at a particular time.  In the post, I also shared the lyrics that I have been able to relate to from the perspective of someone living with a neurological condition.

But music has the power not only to express such emotions that we may be feeling but can also help change our mood.

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If we are feeling sad for example, then listening to an upbeat song can help lift our mood.  In fact, there is music for every mood imaginable – songs to help calm an anxious or overwhelmed mind, music to uplift you, music to pump you up or just to fill a silence.  They also have the power to take us back to happier memories – for example, whenever I hear the song ‘Brave’ by Sara Bareilles (which coincidentally almost made it into this list) it transforms me back to the amazing cruise I took with my parents around the Canary Islands, and therefore I cannot help feel happy and nostalgic whenever I hear the upbeat tempo of its opening bars.

Living with a neurological condition has many ups and downs, and when in the midst of a flare, for example, it can be very trying.  When pain and other symptoms increase, my mood often dips, and I can become quite depressed.  For these times, I have a toolbox that I rely on to help decrease the effect that these symptoms have on my well-being.

And one of these tools is music!

A playlist of positive and uplifting songs that help lift my mood, and remind me of all that is right with the world, and that good times are waiting beyond the current storm.

[Tweet “A playlist of uplifting songs can help lift the mood and remind us that good times are ahead.”]

So, following on from last week’s blog post, I thought I would share my uplifting and encouraging playlist with you all:

‘Fight Song’ by Rachel Platten

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

This song has become somewhat anthemic for those facing adversity, especially those within the chronic illness community.  Its upbeat melody and inspiring lyrics help keep us fighting through the darkest days of living with health problems.  It’s a song that can motivate anyone to continue fighting through any obstacles or challenges they may be experiencing, and not give up.  It’s a song, I think you’d agree is hard not to join in with when it’s playing on the radio!

[Tweet “‘Fight Song’ has become anthemic for those facing adversity, especially those with chronic illness.”]

‘Hold On’ by Wilson Phillips 

Don’t you know?
Don’t you know things can change
Things’ll go your way
If you hold on for one more day
Can you hold on for one more day
Things’ll go your way
Hold on for one more day

Not one I would have chosen, but have heard this so many times on the radio station that I listen to, that it was hard not to add this to this playlist! It’s an incredibly catchy song that can give hope on a day where you are feeling a little hopeless and lost because of debilitating and never-ending symptoms. Many times have I been in my carer’s car on a bad day, and this song has played, and I have felt a little better and more hopeful for better days.

[Tweet “Hearing ‘Hold On’ during my bad days has made me feel better and more hopeful for the future.”]

‘Don’t Be So Hard on Yourself’ by Jess Glynne

Let’s go back to simplicity
I feel like I’ve been missing me
Was not who I’m supposed to be
I felt this darkness over me
We all get there eventually
I never knew where I belonged
But I was right and you were wrong
Been telling myself all along
Don’t be so hard on yourself, no
Learn to forgive, learn to let go
Everyone trips, everyone falls
So don’t be so hard on yourself, no
‘Cause I’m just tired of marching on my own
Kind of frail, I feel it in my bones
Oh let my heart, my heart turn into stone
So don’t be so hard on yourself, no

I love Jess Glynne and her amazing voice, and this is one of my favourite songs of hers.  Living with chronic illness is difficult, and it’s so easy to get caught up with beating ourselves up over what we are unable to do or things we haven’t done because of chronic illness.  This song is such a beautiful reminder that everyone experiences bad times and we shouldn’t be so hard on ourselves.

[Tweet “It’s easy to beat ourselves up over what we are unable to do or things we haven’t done.”]

‘I Don’t Want To Be’ by Gavin DeGraw

I don’t want to be
Anything other than what I’ve been trying to be lately
All I have to do
Is think of me and I have peace of mind
I’m tired of looking ’round rooms
Wondering what I’ve got to do
Or who I’m supposed to be
I don’t want to be anything other than me
There are times that I feel ashamed of the person I am, and the limitations and restrictions that exist because of my neurological condition.  Because of my condition and after being bullied for many years, I often feel that I am not beautiful or good enough, but this song is a reminder that we should not be ashamed of who we are and instead to be proud of the person we have become.
[Tweet “‘I Don’t Want To Be’ is a reminder not to be ashamed of who we are and be proud of who we are.”]
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‘The Story’ 
All of these lines across my face
Tell you the story of who I am
So many stories of where I’ve been
And how I got to where I am
Perhaps not the most upbeat melody of the songs listed on my playlist but is nevertheless a beautiful song with lyrics that make you listen and reflect, allowing yourself to relate them to your own story.  The lyrics above, when listening to them, allows me to appreciate how illness is merely just one story that makes up the overall ‘novel’ of my life.  Chronic illness is a part of our journey and our lives but is not one that defines us.  There are so many other parts and many other stories that are more interesting for others’ to discover.
[Tweet “‘The Story’ reminds me that illness is a part of my journey and my life but not one that defines me.”]
Well, there are just five songs that I would add to a playlist of songs to uplift, motivate and inspire during the darkest days of living with chronic illness.
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What other songs would you add to this playlist? Would love to hear your suggestions! Hit the comment box below!
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The Soundtrack of a Chronic Life

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There’s not much in this life, especially in this modern age, which connects us all, but the music is one of them.  After all, it has been used as a means of expression and entertainment in all times and cultures.  Music, it is said is a powerful tool as a means of expressing emotions such as love, hope, joy, and regret as well as being a device for sharing our individual stories.

Everyone may not share the same taste in genres of music – some may prefer classical, whereas others enjoy hip-hop or rap for example.  However, whatever the preference of music, there are certain songs and melodies within the world of music that we can identify with and that conveys the emotional state that we are in, in that exact moment in time.

[Tweet “There are certain songs that we identify with; conveying the emotional state we’re in at that time.”]

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Melodies and the rhythms of pieces of music, for example, can inspire us to move our bodies in which words cannot.  However, as a writer and a person that loves words, I often find myself listening to the words of songs, and the story that it’s sharing with the world.  Sometimes, I even relate to the lyrics; feeling that my story and emotions are being shared through the words of the song.  By sharing with others, our favourite songs or pieces of music that affect us in some capacity is giving a glimpse into who we are as individuals.

[Tweet “I often relate to song lyrics; feeling that my story is being shared through the words of the song.”]

So, I was thinking of those songs, that has resonated with me over the years, and especially those that I can relate to as someone living with a neurological condition.  And so I thought I would share them in a blog post, so here is the soundtrack of a life with chronic illness…

‘Chains’ by Tina Arena 

I pretend I can always leave
Free to go whenever I please
But then the sound of my desperate calls
Echo off these dungeon walls

This hit song from the early 90s tells the story of someone trapped inside a loveless relationship, but in my opinion, it also eerily describes the isolation and vulnerability that comes from living with a chronic condition.

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Living with a long-term condition can feel like we are encased in chains from which we cannot break free from

Not only are we physically trapped within our fragile and uncooperative bodies but we are also a prisoner to the same surroundings for the majority of our time; the longest of our time away from home is very often the number of appointments that we have to attend. It often feels that I am at the mercy of my symptoms, especially since given the severity of the dizziness and the weakness in my legs, I am unable to leave the house by myself, resulting in being isolated within the same four walls for days on end.  It may not be an actual dungeon or prison, but if very often feels that I am kept a prisoner by a neurological condition and perhaps why I relate to this song and specifically these lyrics as much as I do.

[Tweet “‘Chains’ eerily describes the isolation that comes from living with chronic illness.”]

‘Hurt’ by Johnny Cash

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that’s real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything
What have I become
My sweetest friend
Everyone I know goes away
In the end

Anyone living with chronic pain is no stranger to the word hurt.  Chronic pain has unfortunately become a constant in my daily life, and all my legs seem to do is indeed hurt.  Chronic pain often becomes all-encompassing; the only reality at that particular moment we can focus on and which is the only thing that feels real (“I focus on the pain/The only thing that’s real”).

But the song does not only delve into the realities of living with chronic pain, but we can relate to its lyrics that discusses one such consequence of living with a chronic illness which is the breakdown of relationships, such as friendships.  Another repercussion of life dealing with severe symptoms is we very often need to cancel plans, often at short notice.  Although those friends at the time are understanding and concerned, when we cancel plans more and more, those friends stop their invitations and seemingly walk out of our lives leaving us more isolated and lonely than ever.

The consequence of living with chronic pain is not only physical but can also lead to emotional hurt also.

[Tweet “Anyone living with chronic pain is no stranger to the word hurt.”]

‘The Climb’ by Miley Cyrus 

Every move I make feels
Lost with no direction
My faith is shaking but I
Gotta keep trying
Gotta keep my head held high
There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb
Chronic illness seems to take everything away from us – our independence, dreams, friendships, mobility to name but a few.  It’s a never-ending battle; with some victories that we can claim, and others we lose. Chronic illness often comes back stronger and more tenacious than ever and once again we are knocked to the ground once more.
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Our dreams and ambitions sometimes have to be forgotten, or alternatively, we have to think of creative ways to achieve them.  But above all else, we never give up; never give in our surrender to our symptoms.  We pick ourselves up and attempt the climb once again.  This is what the songs ascribe to – the struggles that we face, whether it be from illness or other problems in life, and the resilience and strength we possess to carry on regardless.
[Tweet “‘The Climb’ is a great metaphor for the struggles we face and the resilience we possess to carry on.”]
‘Demons’ by Imagine Dragons 
I want to hide the truth
I want to shelter you
But with the beast inside
There’s nowhere we can hide
No matter what we breed
We still are made of greed
This is my kingdom come
This is my kingdom come
When you feel my heat
Look into my eyes
It’s where my demons hide
The lyrics of ‘Demons’ really resonates with me during the dark times of living with chronic illness.  The depression and hopelessness that infiltrates my thoughts when the pain and other symptoms become too much to live with.
We hide these darkest and thoughts away from those closest to us; sheltering them from the beast that is depression and anxiety.  They come from nowhere and from which we cannot escape.  They are our demons and which seem to come to life with chronic illness.
[Tweet “The lyrics to ‘Demons’ resonates with me during the dark times of living with chronic illness.”]
Well, those are some of the songs whose lyrics I have found I can relate to from living with a neurological condition for all these years.  But what about?  What are the songs which you would add to a soundtrack to describe a life with chronic illness?  Add your suggestions and stories below:
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One Lovely Blog Nomination

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I have been nominated for the ‘One Lovely Blog’ Award by the equally lovely Rebecca! Rebecca herself has an excellent blog called ‘A Punk with MS‘ with plenty of brilliant resources for anyone also dealing with the diagnosis of Multiple Sclerosis.  It’s a fantastic read!
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Rules:

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share seven facts about yourself
  • Nominate at most 15 other people
  • Tell your nominees the good news

Seven Facts about Me:

  1. My favourite breed of dog has to be the dachshund! Our dog who passed away last year was part dachshund (with a little bit of Jack Russell thrown in for good measure!).  I just love their short little legs and beyond expressive faces! Anyway, when I am sad or feeling alone, I like to watch cute and funny videos of them on YouTube to cheer myself up!
  2. I am a bit of a film buff – watching and talking about films it’s something I have always loved and am constantly picking up random and useless information about them.  In fact, I am a master at film rounds at quizzes, even being able to answer questions about films I’ve never even seen!  At the moment, I am particularly excited about the upcoming release of ‘Beauty and the Beast’ (but who isn’t it?) as it’s been a favourite Disney film of mine since early childhood.  I’ve always related to the character of Belle as I’ve constantly felt like an outsider for most of my life, and for my love of reading.
  3. Most women love their shoes but I, in fact, hate shoe shopping! Always have!  With my little feet, I continually struggle to find shoes that fit with a lot of styles either being too small or too big. Nightmare!
  4. My parents often call me ‘The Oracle’ and expect me to know everything!
  5. I just love the taste of peanut butter and in fact, all of the recipes that I have saved on Pinterest has some form of it in them! All naughty recipes but sounds too delicious to resist!
  6. My favourite form of ultimate self-care is a trip to a spa.  It may not always help ease the persistent symptoms that affect my body, but still find the peace and tranquillity of a spa incredibly relaxing that it’s hard not to come away feeling better than when you first walked in.  And it also allows me to spend quality time with my favourite person – my Mum!
  7. My favourite smell of the moment is my new Yankee Candle, ‘Cherry Blossom.’ When I need a little peace and ‘me’ time, I enjoy lighting this gorgeous scent while reading a book.

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My nominees are:
Jen from Tripping Through Treacle; Yvonne from The Zebra Mom; Sarah from A Life Less Physical; Lisa from A Damsel in a Dress; Charlotte from FND and Me; Caitlyn from When Mental and Chronic Illness Collide; Kelly from The Invisible Warrior; Charis from Being Charis; Astrid from Lady with MS; Angela from Take with Sugar; Jen from Spoonfuls of Glitter; A Barefoot Goddess on a Journey; Sharon from Wheelie Me – Still Me!; Ava from My Meena Life and Emmie from Illness to Wellness: A Journey.
 

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