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Alone in an invisible world…

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This post is for a competition run by an organisation called Labs* by One Squat Shop together with health activist Megan Densmore.  Megan has organised a team of film-makers to make a documentary, called Invisible which highlights and raises awareness of invisible health conditions.  Lindsay Tabas of One Squat Shop has teamed up with Megan and with designer Mat Poirot have produced a limited edition t-shirt which together with the film highlights and makes people aware of the invisible symptoms that people with chronic health conditions suffer but cannot convey to others.  The competition is for one blogger (and one lucky reader) to win a copy of the film and t-shirt (or tank top for women). 

The prompt for the blog post is:

What does the t-shirt design mean to you? How does it make you feel? What does it tell people without invisible illnesses about your experience? How do you hope this will help awareness?

 

The word invisible conveys so many images and messages.  The definition states, that invisible is something that is “not visible, withdrawn from or ought of sight or something that is not perceptible by the eye.”  When I was much younger at secondary school, I thought I knew the meaning of the word as I felt completely invisible to the rest of my peers due to being continually ignored and much time spent on my own due to being ostracised.  However, after living many years with a long-term health condition in which the symptoms that I live with are hidden and cannot be seen by others, I now truly know the meaning of the word.

In many ways, living with an invisible health condition, such as the neurological condition which I live with, is like living inside a bubble of which you are the only one aware of its existence.  You are unable to convey symptoms such as pain, dizziness and fatigue to those closest around you, as they are subjective and is not perceptible to anyone else.  And as those closest to you, as well as society, in general, are not aware of the symptoms that are ruling our lives, those with invisible chronic health conditions are very often met with suspicion and as a result, people can often expect more of us than we are capable of due to ill-health.

As a result, therefore, there needs to be much more awareness of invisible illnesses and the debilitating effect that they can have on the individual living with a chronic illness.  There have been fantastic awareness weeks that have been established on the internet and through social media sites such as Twitter and Facebook, which to some extent have raised the awareness of such conditions.  However, there could be an argument that there needs to be more done to raise awareness of invisible chronic conditions away from the internet and more emphasis for the wider society in general.  In the UK, for example, popular soap operas have been very valuable in raising awareness of a wide variety of subject matter such as HIV, domestic violence as well as raising awareness of medical conditions, many being invisible such as MS and ME as examples.

Invisible---Girls2

This is why this tank top design may be another excellent tool to raise the profile and awareness of such illnesses.  The image above shows the very eye-catching design and for those, without any knowledge of such conditions it may raise important questions in their mind regarding the meaning of the design, and as the wearer of the tank top is asked about the t-shirt, it, therefore, allows a lesson of these prevalent invisible chronic conditions.  For me, the tank top is a great talking point for anyone not touched by invisible illnesses such as lupus, MS or fibromyalgia as examples.   Also, I am sure you would agree the tank top is also very clever with the design including the lungs as it reflects the idea of everyone being able to see inside our bodies, which in reality, of course, they aren’t.  For anyone living with an invisible illness, we often wish that everyone around us were able to see inside our bodies; to see the damage and signs of our conditions that only exist inside of us, and to allow friends and family to visibly see the struggles and pain that are a result of our invisible illness.  This tank top for me is an excellent representation of the unseen and invisible struggles that I carry around with me all the time, just as the lungs that are inside of me.  And for me it does all this without being rude or condescending; it is a fun and fashionable way to raise awareness.  As I live with mobility problems, as well as pain and other symptoms which are constant, these, of course, does not define the person that I am and for me the design perfectly reflects this – our bodies, whether healthy or crippled by illness is a reflection of ourselves, and does not define us as individuals.

I hope that the tank top design will remind individuals to not judge individuals by what they can see on the outside, but be mindful of the person beneath the surface and to be aware of the possible struggles that someone might be living with, which cannot be seen.

Here’s a 5-minute teaser for the film ‘Invisible‘

http://www.youtube.com/watch?v=0QZsXWWtR_c

As ever, would love to hear all of your thoughts regarding the subject of this particular blog post.  What are your thoughts regarding the t-shirt design?

 

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In Chronic Illness

Reasons For loving Winter

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Winter can be hard for those living with chronic illness and chronic pain. But even despite this, however, there are still many reasons for loving winter.

What Immediately Comes to Mind When You Think of Winter?

When imagining winter, which words or images are conjured up in your mind?

For many, they would answer with images such as the nights drawing in during the early evening. Heavy rain lashing against the windows. The sounds of the howling wind outside and fighting against the constant outbreaks of colds and flu.

This myriad of some of the images synonymous with winter paints a pretty miserable picture. Especially when juxtaposed with images of summer such as the bright, warm sunshine, colourful and vibrant flowers and so on.

"Images synonymous with winters such as heavy rain lashing against windows and the sounds of the howling wind outside paints a pretty miserable picture. Winter is indeed the cruellest and relentless of the seasons." Share on X

Winter is a time to dread. Summer a time where everything feels alive and happy and time of endless possibilities.  Winter is indeed the cruellest and relentless of the seasons.

It is only the start of the autumn and winter seasons, and already, I have heard many people complaining and griping because of the cold, wet weather.

The Unrelenting Horror of Winter When Living With Chronic Pain

For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example.

"For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example." Share on X

In my experience of living with spastic paraparesis (causing stiffness and weakness in the legs) the bitter cold weather and the constant downpour of rain increase the level of rigidity and instability that I experience, thereby increasing my pain levels.

During previous years increased levels of pain, stiffness, and weakness has left me reliant on my wheelchair for the majority of the time when out of the house.

Winter weather can often exacerbate symptoms especially pain
Winter weather can often exacerbate symptoms especially pain

There are steps that I, and others living with a chronic illness and chronic pain during the winter months.  These can include wearing thermals underneath warm clothing to lessen the effects of the cold temperatures on our chronic pain.  Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm.  These steps can help us with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being.

"Steps can be undertaken to help with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being." Share on X

The Emotional Impact of Winter on Emotional Well-Being

Many people experience some form of SAD (Seasonal Affective Disorder) a kind of depression associated with reduced exposure to sunlight.  Light therapy involves sitting in front or beneath a lightbox. As well as more conventional treatments for depression, including cognitive behavioural therapy and sometimes antidepressants can help ease the symptoms of SAD.

Winter can be a miserable time for many...and not a good time for those with chronic illness
Winter can be a miserable time for many and not a good time for those with chronic illness – Pinterest

I have talked about positive psychology before regarding helping cope with living with a long-term health condition.

One example of an exercise within the field of positive psychology is keeping a gratitude journal.

A gratitude journal encourages individuals to write down at least three things that have made them happy on that day.

Research suggests that by doing this, it can change the brain’s thought processes. It can even result in more favourable thinking patterns.  Therefore, to be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter.

"To be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter." Share on X

Why Should We Start Loving Winter, Then?

So what are some of the reasons we should love winter?

Reasons For Loving Winter: The Opportunity to Stay Indoors Without Judgement or Provocation

The cold and wet weather during the winter months provides the ideal opportunity to stay indoors. One that is the same for most people regardless of whether they live with a chronic illness or not.  When I tell others I want to stay indoors; there is disbelief on their faces during the summer months.

I am barraged with well-meaning encouragement to venture outside, supposedly an apparent cure for all my ills.  In the winter, on the other hand, others do not comment on my love of staying indoors. Let’s face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits.

"In the winter, others do not comment on my love of staying indoors. Let's face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits." Share on X

As well as being not judged for spending so much time indoors, I also feel that I am not going to feel envious or that I have missed out on anything fun.  Friends and family are also spending the majority of the time at home, choosing to stay in and binge the new series of TV programmes that tend to start when the weather begins to deteriorate.  Recently some of my favourite television programmes have returned to the Autumn schedule, such as Grey’s Anatomy and Criminal Minds.

Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able)
Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able) – Pinterest

Reasons For Loving Winter: Comfort, Blankets and Netflix!

Winter provides us with the perfect excuse to stay indoors and curl up with a blanket and a mug of hot chocolate.  It furthermore provides us with the ideal opportunity to enjoy an exciting book; or watch a film that you might never have otherwise watched via Netflix.  In other words, winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that give us comfort and joy while also protecting ourselves from the atrocious weather.  Whereas summer is all about the fast pace and cramming as much fun in as possible, winter allows us to savour each moment.

A mug of hot chocolate is so comforting during winter - always make time when out shopping!
A mug of hot chocolate is so comforting during winter – always make time when out shopping!
"Winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that give us comfort and joy while also protecting ourselves from the atrocious weather."   Share on X

I also love going to bed during the winter months and getting beneath my delectably thick winter duvet.  For me, this duvet is comforting, especially when feeling the effects of chronic illness.  Our winter wardrobes are also another enjoyable aspect of enjoying the cold and dreary months. To feel snuggly and safe beneath layers of warm layers of clothing such as big thick jumpers, woolly scarves and hats and thick socks when venturing outdoors.

I own a pair of Ugg boots which I continuously wear through the autumn and winter. They are so comfortable and also keep my feet incredibly warm. These boots are among my favourites and which people often comment on when out, which makes me feel good about myself.

My ever so warm and snuggly ugg boots!!
My ever so warm and snuggly ugg boots!!

Reasons For Loving Winter: The Delicious and Comforting Food and Drinks on Offer

A further reason to love winter is the food! Winter food provides comfort during the cold months. Mince pies, apple pies, pumpkin pies and other seasonal treats that appear in the supermarkets. Winter vegetables can be roasted or used as ingredients for bowls of steaming soups or even baked into delectable pies.

"Winter food provides comfort during the cold months. Winter vegetables can be roasted or used as ingredients for bowls of steaming soups or even baked into delectable pies." Share on X

Chilly evenings also provides the perfect pretext to enjoy a steaming mug of hot chocolate topped with whipped cream and marshmallows or sprinkles of cocoa powder. And if the weather is keeping you indoors, there is plenty of time to put everything you have learned from The Great British Bake Off into practice. Assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try but never found the time.

Reasons For Loving Winter: Halloween, Bonfire Night and Christmas!

Lastly, the most important reason to love the winter season is all the exciting events that occur during this time. Halloween, Bonfire Night and everyone’s favourite Christmas! These events provide excitement and wonder and the opportunity to come together with those whom we may not have seen for some time. It is hard to dislike Bonfire Night, as beautiful, colourful and vibrant lights are seen decorating the night skies.

"Halloween, Bonfire Night and Christmas provides excitement and wonder and the opportunity to come together with those whom we may not have seen for some time." Share on X

Even if we are too unwell to attend a local fireworks display, it does not mean that we have to miss out. We can still enjoy the firework from the comfort of our own homes, which I often do.

Doesn't everything look pretty and magical with fairy lights during the winter months?
Doesn’t everything look pretty and magical with fairy lights during the winter months? – Pinterest

Throughout November and December hangs the air of excitement and wonder as Christmas approaches.  Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights. 

"December hang the air of excitement as Christmas approaches.  Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights."  Share on X

Furthermore, with Christmas also brings a collection of beautiful food, heart-warming and cheerful family films. Television specials, festive events and activities, happy festive music as well as time spent with loved ones exchanging presents.

It is true that Christmas also brings a lot of activities that can deplete the number of limited spoons. Still, in my opinion, it is worth it for the happiness and the formation of happy memories that Christmas brings.

What are your reasons for loving winter?  You can contact me via Twitter using @serenebutterfly or sending me an email at brainlesionandme@gmail.com.  

Or comment below.

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Life is anything but a fairy tale
In Chronic Illness

Life is anything but a fairy tale…

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Sorry for the recent lack of updates on the blog.  Despite still being active on my social media sites, I, however, have struggled to find the time or energy to write a post for the blog.  I had been experiencing good days during the last posts that I published. Still, unfortunately, as many of you living with a chronic illness will relate to, these good days do not last, and so my health has slowly regressed back and therefore bad days have replaced the good days. And days where life has been anything but a fairy tale.

Finding Solace and Comfort in Films

But, I have found time to watch films that I had wanted to see for some time.

I cried during ‘The Fault in Our Stars’ and enthralled with ‘Maleficent.’

Captivated by the story of the villain depicted in the classic Disney film ‘Sleeping Beauty’ and even more so by the enchanting performance by Angelina Jolie.

A beautiful image of the Cinderella Castle in Magic Kingdom but as experience teaches us, life is anything but a fairy tale

And I was particularly impressed by how Maleficent was not merely a retelling of the fairytale Sleeping Beauty.

Don’t get me wrong, I love fairy tales, my favourite being Beauty and the Beast, but let’s face it, they are all highly unrealistic.

They portray everything as being black or white, or characters being either good or evil.

What I loved about Maleficent, therefore, was the portrayal of the eponymous character as being both good and evil.  Unlike classic fairy tales, the story of Maleficent portrayed various shades of grey.

My Movies TV Google Play
My Movies TV Google Play2

Fairytales: A Metaphor of Life With Chronic Illness?

It then got me thinking of life with chronic illness.

If we were in a fairy tale, our illnesses would play the character of an evil beast.  Illness becoming the role of a villain, much like Maleficent in Sleeping Beauty or Ursula from The Little Mermaid.

Our lives would be darkened and ruined by the beast that is inside of us.

Every day would be bad with no room for happiness, sunshine or joy.

However, just as real life is not merely black and white; I choose to believe that the experience of living with a chronic illness is more like the portrayal of Maleficent; no one thing is purely good or evil.

But life, and especially life with a chronic illness, is anything but a fairy tale.

Chronic Illness: A Hero Or A Villain?

I believe that even living with something as tricky as a chronic illness; there are a lot of different shades of grey.

There are good times despite living with chronic illness, even though the ‘sick’ days heavily outweigh the good ones.

"There are good times…even though the 'sick' days heavily outweigh the good ones." Share on X

I also choose to believe that chronic illness can be both a hero and a villain, much like Maleficent.

It may sound strange to describe a chronic illness as a hero. Many would not think of such a title given the severe and debilitating symptoms we have to live with because of it.

However, chronic illness can also have a positive impact on our lives. It can teach us things about ourselves that we might never have known.

Chronic illness can also give us the strength and resilience to overcome many obstacles and limitations that our conditions create.

Furthermore, we can also become more empathetic and understanding as a result of our struggles with illness.

The Lessons That Chronic Illness Can Teach Us

Living with a long-term health condition can teach us some invaluable life lessons. Ones that we may never have learned if it wasn’t for illness. Such as the importance of learning to slow down and learning to appreciate the small things in life.

The severe and debilitating symptoms of chronic illness is the predominant reason that it plays the role of villain in our lives. But the lessons it teaches us proves that it can also play the role of a heroine.

images

Classic fairy tales have stereotypically portrayed us, females, as rather feeble and fragile. And in of rescuing by a handsome and athletic Prince

Modern Disney films, such as Mulan and Frozen, for example, have shattered these archetypes. They have shown that females have the strength and power to rescue themselves from the trials and tribulations that life has thrown at them.

My experience of living with a neurological condition has taught me of our abilities to rescue ourselves from our battles in whatever form that they take.  Doctors, medications and other treatments for me and many others can only do so much.  It is often down to us as individuals to self-manage our conditions. As well as finding little ways to help ease our symptoms or that which makes us feel better emotionally.

"Chronic illness has taught me we all have the power to rescue ourselves from our battles." Share on X

It is up to us to save ourselves from the depression and emotional pain that can result from living with a long-term chronic illness.

It is our responsibility to make sure we are happy and live the best life we can, regardless of the limitations upon us due to chronic illness.

Life Is Anything But A Fairy Tale

Classic fairy tales and Disney films are renowned for their ‘happily ever after’ and as we are all aware, in real-life, and especially a life with chronic illness happily ever after merely does not exist. Life being anything other than a fairy tale.

"There are no happy ever after's with chronic illness…but it does not mean that we cannot be happy." Share on X

It does not mean that we cannot be happy.

However, we need to find our idea of happiness, whatever that may entail.

Happy endings can be difficult to find as a result of chronic illness, but I would like to think that they do exist, but perhaps it means that we have to look that little bit more to find the rainbow through our storms.

Happy endings can be found despite chronic illness but life is still anything but a fairy tale
Happy endings can still be found despite chronic illness!
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Thriving and Exciting News!

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Hello to readers new and old.

I hope everyone is doing well and have enjoyed the latest posts that I have written on the blog.

As loyal readers of the blog will know, I have developed my writing further by contributing to a new digital magazine for those young people living with chronic illness.  The Pillow Fort Magazine ethos is to provide a positive space for those living with chronic illness, and the magazine is a small part of their mission.

The latest issue is the 4th edition to be published and the theme was Thriving.  As a result therefore there are many submissions from those who also live with chronic illness who have not wallowed in misery due to their circumstances but how they have used their personal experiences of illness to grow and thrive.  Each page will inspire and lift your spirits.  It’s a fantastic read, I promise.

I wrote a piece on the chronic illness community and how that our experiences with illness allows us to grow and thrive as individuals and as a community.  I compare the chronic illness to flowers that grown and bloom after being inspired by a quote from Mulan – “The flower that blooms in adversity is the rarest and most beautiful of all”.

 

 

To find out more and to purchase your own copy of the magazine just click on the picture below. Copy-of-The-Pillow-Fort-3-1-600x600

 

If however you are unsure that you will  enjoy the magazine and so don’t want to spend the £3 for the magazine, The Pillow Fort Magazine is also offering a sample issue FREE which includes highlights from the first four issues of the magazine!  Just head on over to the The Pillow Fort website and scroll down to the Pillow Fort Magazine Sampler enter your name and email address and voila it will be sent to your inbox for you to enjoy and savour.

Copy-of-Copy-of-Pillow-Fighters-Club-3-600x600

 

In other news I am very excited to announce that I have been nominated for two awards for the upcoming WEGO Health Activist Awards.  Two members of the wonderful chronic illness community has nominated me for:

  • Best in Show: Blog
  • Best in Show: Twitter

I am s overwhelmed and humbled that there are people that have taken the time and thought of me as worthy of such a lovely accolade so I would like to thank those who nominated from the bottom of my heart.  This year, WEGO Health has set up a Nominee Directory where you can find out the other nominees, find out more information about them as well as the awards they have been nominated for.  Also, you can even endorse nominations by pressing a button and entering your name and email address.

Therefore, I am asking everyone who regularly reads my blog and enjoy my posts to take the time to endorse my nominations if you so wish.  You can view my page in the directory by clicking here.

And you can also take the time to thank the health activists and bloggers that have made a difference in your life or community by nominating them for one of the fourteen awards this year by going to the nomination page.

 

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Life in a Spin

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Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin
Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

Infographic_final

There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

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