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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Being a Prisoner to Chronic Illness

Having experienced symptoms associated with 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 this that I have resonated with over the years and perhaps one of the reasons it remains my all-time favourite film.

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Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the puzzle that it was meant for.  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 the reason why I find it so difficult to trust people.  I am extremely protective of my heart, preferring to keep people at a distance before they hurt me.

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 because they leave me feeling very unwell if I am exposed to such triggers.

It seems that if you decline invitations on several occasions, you become a social pariah and invitations are 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 within the goings of our social groups and invited to events even if we aren’t always able to attend.

pexels-photo-226634I am limited so much by my condition; the dizziness that can be 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, the majority of my time is spent at home; confined by the same four walls every day, often by myself or surrounded by the same faces.  Spontaneity is near impossible and so impromptu trips to somewhere that takes my fancy is inconceivable as a captor to chronic illness.

pexels-photo-102159Living with a chronic illness can often feel like being trapped in prison, from which there is no escape.  Trapped inside of our own bodies.  Trapped within our surroundings, held hostage by our symptoms.  It can often feel that they are in control of our lives; that we answer to them regarding what we do during the long days living with them.

Chronic illness often shrinks our entire worlds.  And not just our physical surroundings, but can affect our social lives.  For me, this neurological condition has shrunk my whole existence; my whole world is now so small that I could live on the smallest island and still have space to widen the world in which I live.

IMG_20170214_115718_427.jpgI have recently read ‘Happy’ by the talented Fearne Cotton; a book that she was written to help readers let go of the idea of perfection and to instead embrace and enjoy the small, everyday joys in life.  In one of the chapters, Fearne discusses the concept of ‘gangs’ or ‘packs.’  Groups in which we feel we belong, as well as those friends who we can call upon during turbulent times.  Reading this chapter, made me realise how isolated I have become due to chronic illness.  How I have very few people in my life who I can trust and rely on, and how I have very few friends that I can go out with and have a chat over coffee and cake.

I have made friends who also live with chronic illness through Twitter or even through writing this blog, and although these relationships have become meaningful, the distance between us irks me.  If only, they lived closer, to allow us to have a relationship beyond a computer and telephone.

I have no clue on how to overcome this isolation and escape from this prison that chronic illness has forced me into and how to meet new people when these symptoms restrict my life so.  How I want to break free from this darkness and see the light and freedom that life has to offer.

Do feel like a prisoner due to your condition?  How do you cope with this?

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!

2017: A Year for Grace

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 yo 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.

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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?

 

 

 

 

 

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.

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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.

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.

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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?

Walking Through Life with Shaking Legs…

Recently I have been reading many blogs written by others who also live with chronic illness.  In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.

If someone had asked me a few years ago what was my worst symptom then I definitely would have replied with “the constant and unrelenting dizziness.”  The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick.  The dizziness can be so bad that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.

Now however I would have to admit that the trembling in the legs has become my most troublesome symptom.  Like the dizziness, the trembling is constant, unrelenting and has become life-altering.  The severity of it does vary from day-to-day, sometimes minute by minute.  Life has become increasingly unpredictable.

This morning, I woke up at around 8.30.  Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable to stand or even walk and therefore had to remain in bed until the trembling subsided.  It did after half an hour or so, and was able to get up and start the day ahead.  This is unfortunately not uncommon and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.  It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day.  Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.

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Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating.  So what makes the trembling my worst symptom?

It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs.  Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.

It’s the same with the neuropathic pain caused by my neurological condition.  Yes, for the most part the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it.  In addition, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure.  But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom and not even distraction techniques help to take my mind off the sensation.

The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life.  Such as the amazing support that my friends and family show me everyday.  Life with chronic illness can be messy and difficult, but I choose to believe that there are still plenty of silver linings to be found.

So, tell me what is the worst symptom that you live with?

Feel free to comment below!

 

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I Blog Because…

I was recently received a DM on my Twitter account from fellow blogger John Sennett asking me if I were interested in taking part in a campaign that he created called #iblogbecause, an initiative to spread positive messages around the blogging community.  Here is his original post on the idea for the campaign to find out more and perhaps even to take part yourself.  So here is my contribution on the reasons behind why I blog.

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In my personal experience living with a neurological condition has in some ways stolen my voice and effectively trapping me amongst the same four walls in which I spend the majority of my time.  The pain and torment that the symptoms associated with my condition creates in my life remain invisible to the rest of the world, of course there are subtle signs of a life filled with pain and illness if one chooses to notice.  But largely, the life I live with constant and relentless symptoms remain unseen, trapping me in a bubble that only I am aware of as the rest of the world walks on by.

And so I blog because it gives me a voice.  As someone who is somewhat of an introvert and not eloquent in the slightest when it comes to public speaking, I am unable to use my voice to raise awareness of issues and life with an invisible neurological condition.  However, give me a pen and paper (or a computer and keyboard) and I am able to write as some people tell me quite eloquently and to use this to write what life is like with such a condition as well as issues that affect and are important to the chronic illness community.  To have a voice and say in such matters despite symptoms keeping me from being able to leave the house.

Writing can be a cathatric experience...
Writing can be a cathartic experience…

I blog because it enables me from being able to meet others and making friends with such like-minded people and those experiencing similar realities to myself.  I have read a lot of blogs from others also living with neurological conditions or other chronic illnesses and reading their experiences and thoughts has almost mirrored by own and reminded me that although we have different diagnoses and live in different parts of the countries or even living on different continents there are more that unites us than divides us.  Blogging has allowed me to make friends and meet a wide range of different people, people who are there for me and able to lean on for advice and support perhaps even more than I had in my life before I started my blog and utilised social media as an extension of my writing.  Through writing and this blog I am able to inspire others and in turn inspire me.

I blog because it gives me a focus and escape from being ill, despite that being the focus of the blog.  Writing allows a cathartic release and escape from illness and pain.  Writing, especially blog posts that are planned, rewritten and edited before being published in the blogging stratosphere takes my mind off being ill and from the symptoms that are making themselves known.  Being able to write and have a focus beyond watching a film or a TV show, quietens the symptoms and allows me a creative outlet for everything that bothers me about living with a neurological condition.

I blog because it is something that I enjoy and above all it gives me a purpose beyond that of living with chronic illness.