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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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In Chronic Illness

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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In Chronic Illness

2017: A Year for Grace

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2017 is, many would argue is finally upon us.

It is the time for new calendars, new diaries, and for many the promise of a fresh start as if January 1st provides a clean slate, erasing all of our past mistakes and bad habits.  As if the turn of a date on a calendar assures us that we will become entirely new and improved people.

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Welcome, 2017! 

It is also the year when lots of people make ambitious and unrealistic new year’s resolutions which will inevitably be broken before the beginning of February.

For those of us living with chronic illness, however, making new such resolutions can be especially difficult as, well, our lives are completely unpredictable.  We wake each day not knowing how we are going to feel that day, or what we will be physically able or unable to do.  One day we can be living a seemingly normal life, running around doing chores whereas we can be in the midst of a flare the next, the only thoughts being how to survive getting through the day.

Some days we are able to live whereas others are about just existing.

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It’s the time for making new promises to ourselves to make us better.  What are your resolutions for 2017?

With this mind, therefore, how can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable?  We may have all the intention in the world to keep such resolutions but when living with chronic illness we are often not in control of our own bodies and instead are governed by the constant symptoms we endure.  Are we setting ourselves for failure by making such unrealistic expectations?  Could it also affect our already fragile confidence if we do indeed fail in these unrealistic expectations for the new year?

A new recent trend advises forgetting to make New Year’s Resolutions and to instead focus on just one word that sums up who you want to be or how you wish to live your life.  The word, if given full commitment can not only shape our year but also the person we become.  The word chosen is said to be a compass which can be used to direct our decisions and guides ultimately how we live day-to-day. one-o
My word last year was HOPE.  Although many people would describe me as a positive person, I often felt that hope was out of reach because of the effects that living with a neurological condition was having on my life.  I wanted my life to be about hope; focusing on the positives instead of dwelling on life with chronic illness.  To be able to appreciate and embrace the small joys of life and celebrate the achievements, however small.

This year my chosen word is GRACE. Life with a neurological condition for me personally continues to be challenging and difficult.  Every day, the symptoms associated with my condition affect my daily existence dictating what I am or not able to do.  And that can be frustrating and burdensome.

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According to its many definitions, grace is about being at ease with the world, even when life is arduous such as living with a life-altering medical condition.  To live with gratitude; being thankful for what I do have in my life, and being aware of the blessings that even challenging times provide.

Grace, for me personally, is also about kindness – showing kindness not only to others but also to yourself.  For those living with chronic illness, we are not always guilty of showing ourselves kindness instead harbouring feelings of regret and repentance of things we are not able to do or for cancelling plans whilst we are in the midst of a flare.  Often we harbour feelings of resentment towards our conditions, wishing them away and yearning to be ‘normal.’

But what if grace was also the acceptance that life is not always about trying to be a round peg attempting to fit inside the square hole.  What if grace is instead about finding our unique and individual strengths whatever our circumstances and despite the personal limitations that each of us is living with and developing those as best we can.

Grace is finding purpose in our lives; doing what we love and loving what we do.

And that is my wish for 2017.

What would be your one word?

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In Chronic Illness

The Unchanging Existence of Life with Chronic Illness

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“But everybody’s changing and I don’t feel the same”

– Keane

Well, Christmas has now been and gone.  The presents have been enthusiastically ripped opened.  We’ve overindulged ourselves with turkey and all the other delicious trimmings that adorn our plates (as well as all the chocolates that someone has inevitably bought you!).  Sick of turkey yet anyone?

Now as we enter the last week of 2016 however, it is a time to reflect on the year that has passed and the journey that we’ve been on during the last 12 months.  Change is an inevitability of our human existence, as Meredith Grey once said: “it is literally the only constant in science.”

However, when living with a chronic illness or long-term health condition, we can often feel stuck;  that our lives have become stagnant.  Every year when reflecting on the year that has passed we often come to the stark realisation that although change is apparently inevitable, our lives with chronic illness has not, and are living with the same illness and its symptoms that we were the year before.  It seems that everything changes apart from life with chronic illness.

[Tweet “It seems that everything changes apart from life with chronic illness.”]

At the beginning of the year, for instance, the severity of the trembling in the legs was intense, affecting my mobility and my day-to-day quality of life.  This year, it feels that nothing has changed much in regards to life with a neurological condition.   Chronic illness it seems does not understand time, keeping us firmly in its tight grasp and not allowing us to move, change and grow like other people our own age.

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Again this year because of illness, much of my time has been spent in the four walls of our family home – often needing to spend it lying down in cwtched up with one of my blankets

Today I am surrounded by the same four walls that I spend the majority of my time in, and just like this time last year I find myself alone and isolated from the outside world.  It seems that although people may change when living with a long-term health condition however very often our circumstances do not.  It feels although we are stuck, encased in quicksand, unable to get out.

Looking outside at the wider world we wish that we could be a part of it, instead of being confined to our homes.

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Isolation seems to be another symptom of life with chronic illness

That is not to say that 2016 was all bad.  There were times when the limitations and barriers that often exist became unnecessary and I enjoyed time away from the day-to-day existence of living with a neurological condition.  There was, of course, the wonderfully relaxing and breath-taking cruise around the Norwegian Fjords.  And several challenging but enjoyable days out with my carer including Hay-on-Wye and Hereford.

Welcome to Navigator of the Seas!

As enjoyable as they were, of course, nothing about my circumstances of living with a neurological condition had really changed.  With every step, I could feel the trembling in my legs, fighting the terrible weakness that often causes my legs to give way and sending my body crashing to the ground. The excruciating pain that feels as though my legs are trapped in a vice-like grip. Attempting to ignore the dizziness and the accompanying double vision that threatens to knock me off-balance.  Just as these symptoms have for the past 365 days (and even more).

[Tweet “These symptoms have been the same for the past 365 days (and even more).”]

Also, the lack of answers and knowledge regarding the symptoms that I am constantly living with is yet another aspect of life with a chronic illness that has not changed.  Although an appointment to see a top neurology consultant in London has come through for April so hopefully, 2017 will become a year of gaining some much-needed knowledge and insight and learning exactly what I am up against.

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Time is constantly moving forward but living with a chronic illness we can often feel that we are stuck – as if our lives are on pause

But as we set to embark on a new year and wave goodbye to the last, reflecting on the events of the last 12 months, perhaps it is time to celebrate the small and seemingly insignificant achievements.  Achievements that although may seem inconsequential, for those living with chronic illness, are in fact a huge milestone and a precipice to small changes that may go unnoticed even by us.

Perhaps I have been too focused on the big changes that never happen in my life to really see and appreciate the small changes that occur despite living with a chronic health problem.  The increase in confidence despite the worsening symptoms, allowing me to venture further than I have before, for example.

I am hoping that 2017 will be the start of even more changes in my life, yes it will be nice if those changes were colossal ones, such as a lessening in the severity of my symptoms or even a definitive diagnosis for my symptoms,  but even if this doesn’t occur then I hope that I can notice and appreciate the small positive changes that do occur.

What changes are you hoping for in 2017?

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