Lighting the Flame for Invisible Illness

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. 

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…

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 specialities, 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.

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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.

A clinical diagnosis almost acts like a light sabre 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 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 learnt 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.

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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.

Self-Care & Happy Distractions

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.

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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!

Living With The Darkness

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 […]

Storms Don’t Last Forever

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.”

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 during 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.

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.

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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A Chronic Illness Playlist

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 it’s 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.

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.  It’s upbeat melody, and inspiring lyrics helps 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!

 ‘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.

‘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.

‘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.
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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.
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!

The Soundtrack of a Chronic Life

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.

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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.

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 tell 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.

‘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 hurt but can also lead to emotional hurt also.

‘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.
‘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 with life 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: