Being a Prisoner to Chronic Illness

Loneliness. Isolation. Solitude.  Three words that I would describe life with a neurological disorder, excluding words associated with the symptoms that accompany said condition.

Having experienced symptoms related to the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years and perhaps one of the reasons it remains my favourite film to this day.

Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone. I have been bullied by so-called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you politely decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition.

We desperately want to be included in the goings of our social groups and invited to events even if we aren’t always able to attend. Our anthem song slowly becomes ‘All By Myself’, and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

I am limited so much by my condition; the dizziness so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

Also during the very first cruise, due to the severity of my symptoms at that time, much of the holiday was spent cooped up in our cabin. Unable to even get out once outside of the ship to enjoy the surroundings and activities that the beautiful countries such as Italy had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer.  As much as I would like to get out of my ‘prison’ cell and go out and participate fully in life, it is incredibly difficult.  In everyday life, it feels as though I am continually being held hostage by the pain, dizziness, and fatigue as well as the myriad of other symptoms that I experience because of this neurological condition.

At other times, it is not the want to go out or being held hostage by symptoms of chronic illness that keeps me prisoner but rather the lack of opportunity.

Others may assume that I will be forced to decline the invitation due to ill health, or I am merely forgotten, but whatever the reason I’m once again excluded, ostracised. Even in the darkest times, and after experiencing the extreme depths of loneliness and isolation, I crave the company of others, at least the companionship of others who I don’t live with and already regularly see!

You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded from, which little by little chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations as after being stuck inside the house for so long it seems that you have forgotten how to converse!

Amidst the constant solitude, we are instead forced to find companionship amongst our favourite books. Whenever I reread ‘Little Women’, a book that I read for the first time as a child it is like saying hello again to an old friend. Failing that and perhaps on some of our worst days, then it is our favourite TV shows and those that portray our favourite TV and literature characters that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

Social media and the vast community that exists of fellow warriors, also living with long-term health conditions helps with the loneliness and isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through as they experience it to can bring welcome light into the darkness, and at last making, you feel less alone in the world especially when living with a rare or complex disorder like me.

It is relationships like these which help loosen the shackles and somewhat releases you from the prison that living with a chronic illness has built.

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness, isolation and solitude is a regular part of your life with chronic illness.  But remember that you are not alone and feel free to comment below, or even email me or connect with me on social media (links at the top of the page).

 

 

Mindful Realisations

Recently, I finished a six-week Mindfulness Course.  I

I was referred to the course by a healthcare professional to help with the anxiety that I have lived with for many years and is a consequence of living with a long-term neurological condition.

Everyday Mindfulness, describes it as:

Mindfulness helps to change the way you think and feel about your experiences, especially stressful situations.  It involves paying attention to your thoughts and feelings in order to become more aware of them, less enmeshed in them, and better able to manage them.

Throughout the course, we learnt about the principles of mindfulness; specifically the triad of awareness, acceptance and non-judgement that the technique is based upon.  Mindfulness teaches us to be focused and aware of the present moment, to acknowledge and accept our feelings without judgement or battling against them, to be better able to embrace them and ultimately let them go.

As the course was facilitated by Mental Health Services, the sessions were focused on the technique being used for anxiety and depression; our negative thoughts were described as being like trains, and when suffering from anxiety we enter the train letting those negative thoughts circumvent our brain.  Mindfulness, however, teaches us to stay on the platform, but allow the trains to pass without getting on.  Such a brilliant and simple metaphor to explain what mindfulness is and its function.

Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them

As the course progressed, I began to realise that the technique could not only be used for anxiety management but also help with the stress that living with a long-term health condition can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now.  This is supported by much research which has shown that patients with chronic conditions reported feeling calmer, better equipped to deal with illness during times of stress and reported higher levels of well-being after incorporating mindfulness into their daily routine.

After starting the mindfulness and relating it to my life with a neurological condition, I came to realise how little I have actually accepted my illness.  When we are mindful, we give our full attention to whatever is happening in the present, and without changing the narrative and judgement of our thoughts and feelings. Acceptance, in essence, means acknowledging that of what we have no control of; accepting life as it is at this exact moment.

While in the midst of excruciating and debilitating symptoms, however, it is difficult not to judge – ourselves, for our perceived weakness or our failing bodies which cause these symptoms, to begin with.  Nor do we as patients sit there without attempting to change our current experience – we try medications, heat/ice packs, warm baths,  anything to try and ease the symptoms that are consistently bothering us.

Often I feel at war with my body when my symptoms are severe; I curse, hating my weak legs and the other symptoms giving me grief, wishing that at that time I was someone else, had someone else’s body. I worry about the implications of living with a long-term health condition, such as worrying about the future and as a result, my head becomes permeated with worst case scenarios.  So perhaps I hadn’t reached acceptance as I thought.

Mindfulness in many ways somewhat resembles autumn (or fall).  It is said that autumn is a beautiful reminder what a relief it is to let things go that we no longer need, or does not serve us any purpose.  As trees shed their dead leaves during the season; mindfulness allows us to let go of any negative thoughts which don’t help us and only allows us to get stuck in the depths of despair and hopelessness.

Mindfulness instead teaches us to focus on the present; accept our illness and the way its symptoms make us feel allowing these thoughts and feelings to fall into the background enabling us to focus on the positives.  For example, instead of focusing on the pain in my legs, I allow myself to enjoy the feel of the sun on my face or savour the taste of hot chocolate (my favourite Autumn/Winter indulgence!).

Mindfulness is much like autumn reminding us of the benefits of letting go

I am beginning to incorporate mindfulness during my daily routine, alongside the usual practices such as taking medications and journaling.   It is not, unfortunately, a cure for the symptoms associated with my neurological condition, they still exist, but it is a coping strategy for times when everything feels out of my control (which is a lot!).  There are days when I find it difficult, but like anything, it can take practice to perfect the technique.

Mindfulness I have realised can be a mechanism to help find the light, during the darkest of days.

Useful Reading about Mindfulness and specifically its use to help chronic pain and chronic illness: 

• Living Well With Pain and Illness: Using mindfulness to free yourself from suffering by Vidyamala Burch
• How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
• Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch

 

 

Surviving the Storm of Chronic Pain

I have usually talked about my experience of living with chronic pain in passing during the three hundred and fifty posts that I have previously written.  However, today I thought I would shed some light on what it is like living with chronic pain from my own personal experience.

Living with chronic pain is like attempting to function through a torrential storm.  A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.

The excruciating pain is limited to my upper and lower limbs, although the pain in my legs is often much worse.  The pain is unimaginable; a crushing sensation, as if they are leg caught in a vice which is only getting tighter and tighter.  Every step hurts, each step bringing stinging tears to the eyes.

Pain is relentless and all-consuming

At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.

It is crippling and unrelenting causing a massive red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.

Pain consumes everything; a storm that is so powerful and savage causing flash floods. Rough waves pulling at the body, dragging you under, consuming you.  And living with constant pain feels like that, it drags you under to the depths of despair.  It is all-consuming and relentless.

Living with constant pain is exhausting.

If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause.  Dealing with pain every day is draining, each night laying there all alone with nothing but the pain for company is mentally exhausting.  The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights.  In the chronic illness community, we have a word for this – painsomnia.

Often, as the lack of sleep overwhelms everything else, a nap becomes necessary.  But no matter how much sleep we, it is never enough.  Sleep never eradicates fatigue.  A vicious cycle of sleeping during the day and not being able to sleep at night which is seemingly impossible to break.

Painsomnia can last all night and one in which you will try anything to distract you from the pain which usually consists of social media and Netflix

Each morning promises to be a clean slate, a new beginning of hope and promise but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.

It is a constant companion, one who dictates how our day will go and what we can do with our day.  We speculate when the next ‘storm’ will impact, although very often these waves continuously crash, pulling us under, our bodies being slammed from every side by the violent waters.

The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.

Pain can make us feel incredibly lonely.

Pain is invisible, and as such nobody ever knows just how much pain we are in, we are expected to participate in society even when we are consumed with the pain.  We don’t want to say no or cancel plans we have made, but it feels as if we are being held hostage by the pain and as such we are forced to stay at home, clinging to a raft trying not to be sucked under and sink.  Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.

Due to constant and debilitating pain, a lot of time is usually spent alone

Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company.  We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.

There are times when the pain wins; days when we are worn down by the pain.  Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain.  Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass in sight to help you find your way.

Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort.  Despite the constant affliction of pain we continue to hope for better tomorrows.  We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.

Despite living with pain and feeling like we live in darkness when living with a flare we still look and see the beauty in life

The storm of living with chronic pain cannot be stopped, it is a  storm that can only be weathered.  The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging.  We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain.  Techniques which include strategies such as pacing, relaxation skills, and diet and exercise.

And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with baited breath for the next storm to arrive…

After surviving the ‘storm’ of a pain flare, we are left wondering when the next one will arrive…

 

The Magic of Reading

In a recent post, I wrote about my passion for television shows and the distraction that they provide from the persistent chronic pain that has been ravaging throughout my legs recently.  In this post, I also shared my favourite box sets to watch when incapacitated by chronic pain or the many other symptoms that occur when living with a neurological condition.

Yes, television and films are one of my primary passions. However, it is not my only passion.  My first love, and one which has followed me throughout my life since childhood is reading.  Books are something that I have always collected, amassing goodness knows how many over the years and are found all over my home, especially in my bedroom! Many books I donate to charity shops or pass them along to those whom I know would love it as much as I did, but still, I amass so many books!

The problem of being a massive bookworm!

Like many, I hate getting lost especially in unfamiliar places.  But I can spend many hours perusing the shelves of libraries or bookshops that times seems to slip away from me, and wouldn’t notice if I did get lost, or lost sight of my companion.

As a young child as much as my Mum tried to get to engage in other activities such as colouring or puzzles, for example, I quickly became bored, and I once turned to the safety and magic that books provided.  Many of the photographs of me as a young child, I can be seen clutching a book, losing myself in the words and pictures on the page.  As we have now established my condition whether genetic or due to another organic cause, was from birth, I wonder if I retreated into books as a way of dealing with symptoms such as pain that I could not yet verbalise. 

Nearly 30 years later and I am continuing to use books and reading as means of distraction from the effects of chronic illness.  Recently I came across a quote on Pinterest that read ‘Reading gives us somewhere to go when we have to stay where we are.’ And this quote is incredibly apt for someone living with a chronic illness as there are many times in which I I am incapacitated by one or more of the many symptoms that come with living with this neurological condition that I live with day in and day out.  Weak legs that can barely carry me into the next room forces me to lie on my bed, contained within the same four walls that I am compelled to spend most of my time anyway. Days like these I am unable to go anywhere or do anything, and so, I find solace in the written word.

Escapism. A place where I can forget my predicament, and everything that chronic illness has given and taken away from me.  Escapism from the vast number of symptoms that are plaguing me.  But books are not only able to take you away from everything that is bothering you, but they can also take you places.  

Books are like a unique magic carpet ride, transporting you to far away places, places you’ve always wanted to go and experience but which current circumstances prevent you from doing so.  After seeing many pictures and heard stories from those who have been there, Prague has been on my ‘bucket list’ of places that I would love to visit some day.  However, as I’m unable to fly due or cope with large airports, this neurological condition has prevented me from ticking it off my list.

Last year, I read the beautiful ‘A Year and a Day’ from author Isabelle Broom in which a large chunk of the story takes place in this very city.  The way Isabelle writes, and the exquisite level of detail with which she describes Prague and its unique landmarks it made me feel that I had been there and experienced the city for myself.   OK, so it may not be like experiencing travelling firsthand, but when circumstances prevent you from being able to move from where you are, books are the next best thing.  In fact, all of Broom’s books give you major wanderlust as each novel has taken place in a different, exotic locations, and each place beautifully and meticulously described, making you want to grab your passport and book flights immediately. 

 And it’s not only places that exist now that books allow you to visit; historical fiction allows you to visit and experience places that existed many years ago (or at least what it was like from the author’s perspective). But very often, and for me anyway I want to be uplifted.  A story to remind me of the beauty and wonder of the world; to comfort and reassure myself that despite chronic pain there is still hope and much to be grateful for.

Reading can give you real wanderlust!

In books, we can be whoever we want to be.  We don’t have to sick, confined to bed and in constant pain.  We can be the hero, the warrior, the woman who eventually finds love and her happily ever after.  Getting lost in these worlds, we no longer feel the pain that was slowly dragging us down into a dark abyss.  We no longer have to fight against our bodies.  These books that are on my bedside table allows me to experience a snapshot of normality; one in which I am independent, confident.  No longer a burden on others.

Books are a magical portal allowing us to escape from our lives.  Taking us away from this world of sickness – time spent in bed, mobility aids, hospital appointments, and medications.  Books can allow us to find out who we wish we could be.  For many, reading is merely a hobby, a way of filling time, or for light entertainment.  But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness there is magic and power in those printed words.

Does anyone else love to read? What books do you enjoy; are there any that provide comfort and sanctuary away from life with chronic illness?

And let me know of any great book recommendations that you have.

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The Sunshine Blogger Award

Thank you so much to Cheyanne, a lovely young woman who blogs at Hospital Princess in which she shares her personal journey living with Ehlers Danlos Syndrome and its other comorbid conditions including dysautonomia and gastroparesis for tagging and nominating me.

What is the Sunshine Blogger Award?

It is a nomination given to bloggers by bloggers.  If someone nominates you, it means you’re one of 11 people whom they find inspiring and brings sunshine into the lives of your readers.  If you decide to continue to tradition, then follow these simple rules!

Rules for the ‘Sunshine Blogger Award’:

• Thank the blogger who nominated you and link back to their blog;
• Answer the 11 questions the blogger asked you;
• Nominate 11 bloggers to receive this award and ask them 11 new questions; and
• List the rules and display the Sunshine Blogger Award in your post and/or on your site

Questions and Answers

Here’s what The Hospital Princess asked me, and my answers to them:

1. What inspired you to start blogging?
   It was a remark by an online friend who also at the time was blogging. At the time I didn’t have a concrete diagnosis, but we both suffered from chronic dizziness and after reading some of my personal writing and knowing my story living with an undiagnosed condition she suggested creating my own blog to share my journey and to help myself and others going through a similar experience.
2. Instagram or Twitter? Why?
   I would have to choose Twitter; I also have an Instagram account but much more active on Twitter mainly because I hate having my picture taken, always highly critical of my looks.  I also feel that I am much more eloquent with words!
3. If you could choose another “niche” for your blog, what would it be?
   It would definitely have to be writing about books as I am an avid reader.  I have so many books but still always find myself buying more as I discover new and exciting authors and titles within the bookshops that I frequently inhabit.
4. You can travel back in time. What age would you be?
   I would travel back in time to when I was 16 and going through a tough time at school, suffering from depression. I would give myself a big hug and reassure myself that it will be OK and that these feelings will pass.
5. Professionally, what are your future goals?
   I have no idea.  At the moment with my health, I am just trying to get through each day.  But I would like to do more writing, either for online platforms or even get published in a magazine.
6. Who is the biggest supporter of your blog and life in general? How do they keep you motivated?
   Of course, my biggest supporters will always be my parents. But outside of my immediate family, it would be my best friend Aisha who makes an effort, despite her own health struggles to read my writing and my blog whenever I publish something new and has even proofread my writing.  Her support and encouragement always keep me motivated!
7. What is your favourite song lyrics? Why?
   I find lyrics in the song ‘Do You Hear the People Sing’ from the musical Les Miserables particularly inspiring and motivating.  ‘Even the darkest night will end, And the sun will rise’ is a beautiful reminder that nothing in life is permanent and the pain or the negative feelings we are currently experiencing will pass just as the night ends giving way to a new day.
8. How do you promote your blog?
   I promote my blog through my social media channels – Twitter, Facebook and Instagram.  I also am members of various groups on Facebook to help share and promote my new blog posts.
9. Most embarrassing moment?
   I once fell off a stage as I went up to collect an award which was very embarrassing, especially as there is still evidence somewhere as my parents were recording it!
10. What do you dislike the most about blogging?
    It’s not so much about blogging per se, but it can be frustrating when you take the time to share the blog posts of fellow bloggers, but they don’t return the favour.  It doesn’t happen a lot, but some bloggers don’t even thank you which is frustrating as I think especially within the chronic illness community we should all support each other.
11. How have you changed as a person since starting your blog?
    Well, I’ve certainly gained more perspective and insight into my experiences with living with a long-term health condition, have become more eloquent when describing my symptoms with doctors and other consultants, which may have helped in getting answers and culminating in a diagnosis.  I have grown in confidence as a writer and as a person.

My nominees for the ‘Sunshine Blogger Award’:

1. Emmie from ‘Illness to Wellness: A Journey‘
2. Heather from ‘Dinsoaurs, Donkeys and MS‘
3. Chiara from ‘The Millennial Patient‘
4. Amy from ‘Destined2Roam‘
5. Ash from ‘Finding Rainbows in The Dark‘
6. Em from ‘That Silver Spoonie‘
7. Lara from ‘Mummy Seeing Double‘
8. Jen from ‘Tripping Through Treacle‘
9. Rebecca from ‘A Punk with MS‘
10. Caroline from ‘PoTS and Spoons‘
11. Sarah from ‘A Life Less Physical‘

My List of 11 Questions: 

1. What inspires your blog posts? How do you come up with new things to write about?
2. If you had to choose just one social media platform to use for the rest of your life, which would you choose and why?
3. What fictional character do you most identify with and why?
4. If you could be one person from history, who you would choose? Why?
5. What has helped you reach acceptance in your journey with chronic illness? Or do you feel you have yet to reach acceptance?
6. My latest blog post is about my favourite box sets to binge-watch. What was the last show you binge-watched or are currently watching?
7. What lessons have you learnt from living with chronic illness?
8. What blogger or bloggers do you admire the most? What have you learnt from them?
9. Who gives you strength in your everyday life?
10. What are your biggest struggles in everyday life?
11. If you could accomplish anything in your future, what would it be?

Thank you once again to Cheyanne for the nomination! It’s such an honour and so lovely that you thought of me! 🙂

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.

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.

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.”

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…

 

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.

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.

 

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.

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:

The Unchanging Existence of Life with Chronic Illness

“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 has 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.

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.

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.

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.

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 has 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 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.

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?

Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new – whether it be a new day, month or year.  It is like a fresh, white piece of paper, in which the past and everything that has come before is forgotten and instead we are allowed to start afresh.  To start our story anew.  It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, is the unpredictability of it and the unknown of what each new day will bring.  Even with every little sign of illness such as a headache, for example brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since by last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope’, I however have been living with the storm clouds above my head.  Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong, I do not have the irrational belief that I would miraculously be cured during the coming year, but as I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would experience a decline in the severity of my symptoms.

It would seem that this particular thread of hope has unravelled.

In fact these past few weeks has been the hardest weeks that I have experienced in relation to my chronic illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.  The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs has also been very severe, that as my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the forseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle these feelings have unfortunately only increased.  Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, perhaps even considering the social network Meet Up and setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…