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

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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! 🙂

A Chronically (Ill) Induced Boxset Binge

For the past few weeks, I have unfortunately been experiencing a severe flare in symptoms.  Although the symptoms I live with are constant, however, I experience blocks of time in which these symptoms worsen causing much pain and suffering.

Pain, trembling, dizziness and especially fatigue have all been particularly acute of late.  Often I have been unable to do much at all, with the pain and trembling in the legs shackling me to my bed due to difficulties with getting around, even in the house.  Crippling fatigue has also confined me to rest in bed on numerous occasions especially after being out of the house or doing chores around the house.

And it’s in these moments, being incapacitated by the illness that I am unable to do much more than just lie on my bed and entertain myself with a light or comforting book.  But more often than not, however, I have been distracting my mind from the pain and other symptoms with a box-set binge of one of my favourite television programmes.

In this post, I thought I would share some of my favourite box sets that have recently helped me into a chronically (ill) induced boxset binge.

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Bones

Anyone who knows me will know that I am a huge fan of procedural crime dramas, and Bones has to be one of my all-time favourite shows in this genre.

‘Bones’ centres around the relationship between forensic anthropologist Dr Temperence Brennan and Special Agent Seeley Booth of the FBI whom together combine their skill and expertise to solve murders using evidence recovered from dead bodies.  “Bones” is the nickname given to Dr Brennan who heads up the team of forensic scientists of the Jeffersonian Institue (based upon the real-life Smithsonian Institue).  As the show is based on the character created by real-life forensic anthropologist Kathy Reichs (and who is also an executive producer on the TV series) the science and techniques used adds to the show’s realism and authenticity.  Alongside murder inquiries, the show also explores the relationships and private lives of the characters.

Not only is the science of the show interesting and compelling but the writers of the show beautifully write engaging and relatable characters whom you can’t help but fall in love with, especially the show’s protagonist ‘Bones’ whose directness and clumsy demeanour makes her both hilarious and endearing to watch.  Also, what I love about the show is its ability to inject humour seamlessly alongside the horror and gore of its depictions of its murders and dead bodies.

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Blindspot

“Jane Doe” wakes up stuffed inside a duffel bag in the middle of Times Square, naked, unaware of her own identity and covered in strange tattoos covering most of her body.  And it’s this enigmatic twist that makes it so different from any other police drama before or since.

The FBI, headed by Special Agent Kurt Weller, whose name also appears on the back of this mysterious tattooed woman, realises the tattoos are much like a treasure map and when decoded reveals clues to crimes and instances of government corruption.  Also while trying to discover Jane Doe’s real identity, and who sent her to the FBI and why.

If you love dramas that make you think, then this is one to put on your list.  Once you start to watch you cannot help be instantly intrigued with these beautiful and ornate and tattoos as well as the methods used to uncover the messages behind them.  As the series develops, the momentum builds closer towards a shocking and dramatic conclusion, raising more questions than it actually answered, and brilliantly introducing new avenues for future series to explore.  Everything about this series really impressed me, but the standout performance came from Jaimie Alexander as ‘Jane Doe’ who although excelled at the action stunts it was the vulnerability she showed portraying a woman whose entire identity had been erased that made it such a compelling watch.  A series I could happily watch again and again!

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Strike Back

I wouldn’t say that I am a huge fan of action dramas, but Strike Back has to be the one exception and one I can happily watch over and over again.  I’ve even been known to have come to the end of the entire series of the show and then immediately go back and watch it all over again.  The original series of Strike Back was adapted from a novel written by former soldier Chris Ryan and starred Richard Armitage.  John Porter is a disgraced soldier recruited by a secret branch of the British military to travel around the globe in the attempt to stop major global threats while his boss does his best to cover up a mistake from his past.  It was a solid series, however, Strike Back really came into its own during its second outing with the introduction of soldiers, Sgt Scott and Sgt Stonebridge, two leads who share amazing chemistry, and rival any of the best television or film comedy duos. They are engaging, and a delight to watch, and the banter they share is really what makes the show so fun and entertaining.  The one-liners between the two are hilarious, and as it’s a show I watch so of, I am even able to quote them!  But be warned, throughout all of the series there are many instances of explicit language as well as gratuitous sex and nudity.  Certainly not something I will watch in front of my Dad!

But what also makes the show so brilliant is the high octane drama and action.  The stunts are both impressive, and looks incredibly realistic and what the show will be most remembered for.  Although the action is what mainly drives the show, I also enjoyed the emotionally driven storylines, examining the tortured psyches of the soldiers and the moral quandaries that they are forced to confront in their line of work.  It was great to love a show that seemed fresh and new at the beginning of each new series, with ever evolving characters and brilliantly complex storylines, hunting new enemies that threaten not only the UK but it’s political and military allies.  The episodes are so intense and exciting it’s hard not to get carried away and watch several episodes in one sitting!

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Gavin and Stacey

Written by friends Ruth Jones and now very famous James Corden, Gavin and Stacey tells the story of the eponymous characters; one a boy living with his parent in Essex and Stacey, a young woman from Barry, a town not very far from where I live!  They navigate their love affair alongside their best friends Nessa and Smithy, who although they seemingly hate each they keep sharing romantic trysts themselves!

The show is absolutely hilarious, and it never fails to make me belly-laugh no matter how many times I have watched the episodes!  A great boxset to watch when feeling down, feeling the effects of living with a neurological condition.

Other Notable Mentions:

Grey’s Anatomy – it’s fun, addictive and beautifully written with strong and relatable characters that despite their flaws you can’t help but love

Criminal Minds – as someone with a psychology degree, I find their abilities to get inside the minds of serial killers fascinating

Ghost Whisperer – Jennifer Love Hewitt is absolutely compelling to watch as reluctant medium Melinda Gordon.  Each episode is so emotional to watch and never feels to leave you with tears in your eyes

Designated Survivor (on Netflix UK) – with elements of 24 and The West Wing, this show is undeniably intriguing and also complicated at times.  Tom Kirkland (played by Keifer Sutherland) on the eve of the State of the  Union becomes the President of the United States after a catastrophic explosion claims the lives of the President and everyone in his line of succession.  It’s absolutely addictive, and all 21 episodes are now immediately at your fingertips making it perfect binge-worthy material.

I always love to discover new box sets to watch on those days which leave me incapacitated by my symptoms so I would love to hear your favourite box sets and any recommendations on what to watch next!

Leave your suggestions in the comments below!

 

 

 

Lighting the Flame for Invisible Illness

A friend of mine, a lovely woman whom I connected with through this blog, recently asked me to take part in an awareness campaign to shed light on invisible illnesses and the debilitating effects that they can have on the lives of those affected.

We found each other as we both share a diagnosis of Functional Neurological Disorder (FND).  This is a disorder which is a result of a problem, often of an unknown origin, of the central nervous system whereby the brain fails to send or receive messages correctly. As the brain controls all of our bodily functions, the list of potential symptoms is extensive and no two people with this condition will exhibit the same symptoms.

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Sharing our stories can help break through barriers and shine a light on invisible illness

In many ways, there are many unknowns to this condition, but as I have and continue to experience the symptoms can be wide-ranging and debilitating.  Also in both of our experiences living with such an invisible illness can be difficult and isolating as the effects of such conditions cannot be seen.  As a result, my friend Harmoni Shakti wants to shine a light on these conditions to start new and meaningful conversations between loved ones, friends, colleagues and even strangers.  By doing so, Harmoni hopes that all of us can start to converse, start more meaningful and truthful connections so we can better help each other through the tough times that these illnesses can bring.

Harmoni has therefore asked to help ‘light the flame’ on my own journey of life with a functional neurological disorder and my other neurological conditions to help raise awareness that has already been featured on her social media pages and given me permission to also publish on here my own blog.  Do you live with an invisible illness? Why don’t you also light a flame and share your own story with Harmoni and the rest of the world?  Details to get in touch with Harmoni and all of her social media pages can be found at the bottom of the page.

Imagine growing up never fitting in.

Constantly feeling like you are always on the sidelines.

That’s what life felt like for me growing up.  Experiencing symptoms such as dizziness and weird sensation in the legs which no one else in my peer group seemed to experience.  It set me apart from everyone else. 

Encountering such symptoms and not being able to describe what I was going through sufficiently to the appropriate medical professionals during many appointments over many years.  As a result, I felt incredibly alone and isolated from friends and family. 

It continued for many years, dizziness and pain in my legs following me through secondary school and later university. 

These symptoms and new ones including severe weakness in the legs, often resulting in them giving away on me and me on the ground unable to stand or walk.   Visual disturbances, which I often experienced during childhood and was thought to be related to my short-sightedness were added to the growing list of symptoms that had become my life.  With all of these symptoms, I was and continue to be unable to leave the house unaided because of the symptoms and the effect that it has on my life (i.e., the falls and being unable to get back up, especially as there are no warning signs before it occurs).

And as the symptoms worsened and became constant I felt that I became shackled to them; imprisoned to my home because of persistent and incapacitating symptoms.  Left unable to work or participate in society.

I and my symptoms have stumped all of the doctors and consultants whom I’ve seen over the years; unable to find a name for what I am experiencing.  As a result, I was referred to see a consultant in London.  He concluded after numerous tests and reviewing my extensive medical history that several co-morbid conditions were going on; something that happened at birth or a genetic disorder causing a long-standing neurological condition which resulted in functional symptoms, or a functional neurological condition (FND).

If we think of the brain as a computer, neurological conditions such as MS or Parkinson’s Disease are as a result of a hardware problem (damage to the brain observed by an MRI scan) however often people like me can develop symptoms that have no apparent cause or damage to the brain.  In this instance, there is a software problem in which the brain for some reason fails to send or receive messages correctly.

Functional Neurological Condition, like many others, is invisible.  Living with an invisible illness can be incredibly lonely as no one else can see the pain and other debilitating symptoms.  They think we are just like them and cannot understand the problems that we are experiencing at that particular time.  Others cannot see what we are experiencing which is why we should help shine the light on invisible illnesses and the effects that they can have on the individual.

I am lighting a flame for invisible illness and for those who are affected. 

To connect with Harmoni and to help with her mission to shine a light on the effects of invisible illnesses, you can connect with her on her following social media accounts:

Facebook          Twitter          Instagram

You can also share your story by using #lightingtheflame

 

A Diagnosis Matters…

Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.

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Living without a diagnosis is very much like life in the dark

After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark.  You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.”  Then there is the usual carousel of different doctors from different specialities, some you may have seen before but which only yielded more questions.

In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.

Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.

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Having a diagnosis means living with many unanswered questions

I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition.  In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.

And this is true, of course.

Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything.  The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed.  Life is really the same regardless of whether or not we have a diagnosis.

But often a diagnosis matters.  Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label.  They provide answers.  Validation.  Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.

A clinical diagnosis almost acts like a light sabre against those forces that doubted the existence of the symptoms ruling your body and life.

We need to know exactly what we are dealing with.  To have some idea of what the future holds for us instead of living with unknowns and what ifs.  A diagnosis matters.

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It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill.  Getting a diagnosis can lift a weight off your shoulders

A diagnosis can lead to answers.  It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.

It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition.  A diagnosis matters.

A diagnosis can lead to treatment options where there were none before.  And it’s these treatment options that can provide hope and a chance at a better quality of life.  A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance.  A diagnosis matters.

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Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to

For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms since young childhood, some possibly since birth.  For years, I have seen so many different specialists, sometimes more than once.  Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement.  Years with no name or explanation for what I was experiencing.  Years of disappointment and hopelessness after test after test came back normal.

Last year I was referred to see a specialist neurological consultant in London and which I attended last month.  I admit I went to the appointment with not much expectation, after many years of disappointment I have learnt the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.

However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering.  After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.

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Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in

He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing.  Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description.  Could it be that whatever condition I am suffering was determined before I was even born?  That the development of the symptoms was inevitable like me having blue eyes?

Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND.  Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.

Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo.  It is not uncommon for those living with chronic illness to experience more than one condition.  Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once.  Each symptom vying to be the centre of attention.

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Having one or more diagnoses means juggling many symptoms, all of which compete for attention

In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.

So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope.  Hope that we are one step closer to an explanation for symptoms that have been with since a baby.  Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).

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Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.

I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.

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…

SummerEssentials

 

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?