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

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

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

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

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

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

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

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

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

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

As I continue experiencing this particular, and the often distressing symptoms that they bring, I will try and continue to remember that storms don’t last forever, and I hope you do too.
Or if not, I hope you find ways to create your own sunshine…
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Last week, I wrote a blog post about the power of music and its ability to connect with us on a personal level.  The ability of music and its melody or lyrics to express and convey emotions that we are experiencing at a particular time.  In the post, I also shared the lyrics that I have been able to relate to from the perspective of someone living with a neurological condition.

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

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

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

And one of these tools is music!

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

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

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

‘Fight Song’ by Rachel Platten

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

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

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

‘Hold On’ by Wilson Phillips 

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

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

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

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

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

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

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

‘I Don’t Want To Be’ by Gavin DeGraw

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

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.
IIn 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 create 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 my 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 an 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.

This post is genuinely personal and difficult to write, but as I think it will resonate with many others who are forced to live with illness every day, it is, therefore, an important one to write.

There are many times that I dislike myself and am ashamed of who I have become.  If I could be anyone else, I would gladly choose anyone else’s life to live rather than my own.

A lot of that is down to the neurological condition that I live with; everything that life with chronic illness has given me, I believe however that it has taken much more away.

The symptoms that I endure and the impact that it has on my life has stripped away friendships, my independence and ability to provide for myself through meaningful employment that was my aspiration after graduating university and before the deterioration of my condition.  The dreams that I had and the direction that I wanted my life to take was snatched from me and was instead forced to reevaluate everything and take a different path.

[Tweet “Chronic illness has given me so much. However, it has taken much more away.”]

I am sure that I am not the only person living with a chronic illness to feel or have felt this way.

To look at others, measuring ourselves against them and ending up feeling somewhat superfluous in comparison.  When I think of my family and seeing myself through their eyes, I often believe that I must be somewhat of a disappointment to them.

After all, I have not achieved anything substantial during my life thus far. Instead, my life consists of being stuck inside the same four walls or attending one hospital appointment after another.

These thoughts are not consistent and perhaps are worse during the darkest of days.

However, I came across the most beautifully compassionate and profound quote written by A.A Milne and famously said by his most famous creation, Winnie-the-Pooh.

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Perhaps chronic illness is the most significant part of ourselves that make us different but then without it then we wouldn’t be who we have become.

[Tweet “Without chronic illness then maybe we wouldn’t be who we have become. “]

Living with a neurological condition and its symptoms, for many years before being diagnosed, it has shaped who I have become as a person as a result.  If not for living with a neurological condition, I may have become an entirely different person, but then it would not necessarily mean they would be a better person. I like to think of myself as a compassionate and caring person; someone who is there for others and perhaps this part of what defines me as a person is as a result of the experiences of living with this neurological condition.

We often think of chronic illness as being the defining feature of the negative aspects of our personality and lives in general – the loss of independence, loss of self-confidence and so on but perhaps living with a chronic illness may also be the influence for the positive aspects which what defines us.

If it weren’t for chronic illness, I would never have been such an avid user of social media or the author of a blog for example and as a result, would never have found my close friends that I have made since sharing my experiences of living with a neurological condition.

Furthermore, I may not have such a close relationship with my parents if it had not been for the condition that has affected them as much as myself.

The difficulties faced when living with a chronic illness or neurological disorder are extremely difficult, and as a result of living with these for many years, we develop strength and resilience that was not there before the onset of symptoms and may not have developed if not for chronic illness.

The people closest to me can see beyond the neurological condition that I see as being such a big part of my life, and see my value despite the effects of chronic illness, and which I may not recognise in myself.

They recognise the things that make me different from everyone else and yet still love me because it’s those differences that make me and despite me being ashamed of that which makes me different from others.

A.A Milne should be celebrated for not only his profound words and insights of life but also for making those who may feel different from everyone else be proud of those differences and allow themselves to celebrate their individuality.

[Tweet “It’s those differences that make me, despite being ashamed of that which makes me different.”]

As I have been enervated by symptoms, almost leading to the feeling of being trapped in a prison surrounded by invisible tormentors.

However, I was not only trapped inside my own body; a metaphorical prison whilst enduring persistent and unrelenting symptoms but these were also keeping me inside my home due to their severity as well as the fear of the possibility suffering another fall in public.  It was as if the symptoms were acting as prison guards, keeping me imprisoned in my home and the same four walls in which I already spent the majority of my time, to begin with.  I longed for adventure, to experience activity and excitement, like the characters in the books that had become my constant companion as I convalesced in my bedroom.

Adventure. Spontaneity.  Two words that are not synonymous with life with a neurological condition.  Going on an adventure when living with any chronic illness requires planning with almost military precision, and is reliant on a number of factors such as how you are feeling on the day that has been set out for the planned adventure.

Personally, for me, big adventures are also dependent on whether or not my legs are being cooperative on the day, and if they are somewhat weak and the wheelchair is needed then it needs to be a mild dizzy day so the motion sickness does not present itself!  Spontaneity is near possible when living with a chronic illness!

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During a short reprieve from my condition and its accompanying symptoms, I made the decision to make a trip to Hay-on-Wye with my carer on a sunny afternoon in late May.  I say that it was a reprieve, but the symptoms were very much there but the severity of them was not as bad as it had been, so it did feel somewhat of a reprieve but at this point it felt that my condition and its symptoms had been very much in the driving seat dictating everything, from how I was feeling to what I could and could not do and I, was tired.   I was ready to finally take back control and be the one in the driving seat instead of being the passenger on my own ride.

Hay-On-Wye is a small market town located in Powys, West Wales is a place that I had been before, but have desperately wanting to return to since.  It’s most famous as being the town of books with an impressive number of bookshops adorning the streets of the quaint little town.  As a massive bookworm myself, this beautiful place is like a little piece of heaven for me, and I was really excited to make a return to this mecca of literature.

The many wonderful bookshops of Hay-on-Wye
The many wonderful bookshops of Hay-on-Wye

The day itself was beautiful with majestic blue skies with a warm gentle breeze.  It was a beautiful start, the only problem being my extremely trembling legs, as unfortunately the place being somewhat unsuitable for a wheelchair, meant that I had to rely on what felt like incredibly unreliable legs.  But even that wasn’t going to stop me as somehow despite how tough things have been, I finally found my sparkle again.  And despite wobbly legs, several near falls and major fatigue I had a great time in this wonderful little town.  I  was able to browse the many quaint and unique bookshops, treated myself to lunch and just sat down and soaked in the sights and a little vitamin D.  It was a great day; probably the best I’ve experienced for a long while.

Above all, I learned just how much control I allowed my condition to have on my life, yes, some of this was because I had no physical control over this such as the severe weakness and trembling in my legs.  However, I let myself believe that because of the severe symptoms I was not able to do anything at all.  I thought this was my reality, when in fact it was only my perception of the situation.  On the day I discovered determination and strength I never knew I possessed. It felt like pain had my legs trapped in its vice-like grip, but determined to seek out lots of books, I carried on.

Yes, my legs were weak and uncooperative, ready to give way in a blink of an eye, but there are plenty of ways to still an enjoy a day out.  The use of a wheelchair, for example, or by taking regular breaks as we did in Hay (and the perfect excuse to enjoy a hot chocolate!). We may not be able to enjoy a long day out, or a day out like we used to but with appropriate accommodations, we can still enjoy a day out somewhere special.  Are there any perceptions regarding your condition that you think to be a reality?

Admittedly, I perhaps overdone things that day given the fatigue and amount of pain I experienced days after but even that cannot tarnish the memories and the experience of the day.  And above all, it felt brilliant to be back in the car, even if I’m not always in control…

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