Are neurological conditions in fiction ‘Left Neglected’?

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Book report…What’s your favourite book and how can you tie it to your health or life?

For someone who is an avid reader, it is very difficult to choose one favourite book!  I am regularly discovering new authors who has written amazing and enjoyable reads that are both thought-provoking and compelling.  However, what does link many of my favourite authors and their books are the lack of characters who I am able to relate to in relation to life with a neurological condition.

Previously, I have written a post regarding the lack of credible and authentic portrayals of neurological conditions and other chronic illnesses within television.  Unfortunately, the same could be said regarding fiction, as there is a lack of novels featuring accurate representations of life with a neurological condition, or even chronic illnesses.  Perhaps, a reason for this is people want to read books for escapism, instead of reading a book about the often gritty realism of what it is to live with a long-term health condition, or perhaps it is the preference for a story that encompasses the hope of recovery and which depicts triumph over adversity.

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One book that I recently read and thoroughly enjoyed, however, did portray one character’s battle with a neurological condition. The condition portrayed in the book, was not in any way similar to that of my own condition but I did relate to the character’s frustration and certain parts of her journey depicted in the story.  The book is by a fantastic author named Lisa Genova.  Lisa herself has a PhD in Neuroscience and could be argued the reason why Lisa is able to intertwine realistic and accurate portrayals of neurological conditions, with not just accurate information regarding the condition itself but also the emotional toll that it can have on both the patient and caregivers.  The book that I particularly enjoyed of hers is ‘Left Neglected‘ a story of a high-powered career woman Sarah Nickerson who is left with a brain injury after a car accident.  The injury is to the right hemisphere of her brain, which as a result leaves her with a ‘left neglect’ or ‘hemispatial neglect’, in which the brain forgets and ignores information on the left side of her body, and also the left side of her entire world.  For example, after the accident, when her husband is stood by the left side of her, as her brain is unable to interpret or process the information Sarah is unable to see him; Sarah is also unable to feel anything on the left side of her body and therefore has to undergo physiotherapy in the attempt to learn how to walk  and generally recover from the traumatic brain injury.

Obviously, there  are many differences between the neurological condition that I live with and that of the character in the novel.  For instance, the condition in which I live with is not a result of a traumatic brain injury, and in addition mine is one in which is life-long and no chance of recovery, where as in the novel through hard-work, determination and the aid of physiotherapy, recovery can be a possibility.  The symptoms of the conditions are also extremely different – in the novel, the character Sarah has to learn and re-teach her brain to acknowledge the left side of the world and her body.  In my everyday life, however I have to contend with constant dizziness, vertigo, trembling and weakness in legs as well as battling fatigue and nausea.

However, as much as there are extreme differences between my situation and that of the main protagonist in the novel, I did find myself relating to the book and that of the experiences of Sarah.  As a high-powered career woman, Sarah was not the type of person to sit around, and therefore the novel excellently explore the frustration of suddenly being unable to do the simplest task for yourself.  On the days where the severity of the weakness and trembling in the leg leaves me unable to get out of bed and so I feel the same frustrations of not just being stuck where I am and unable to do anything for myself, but also the frustration of not being able to do the things you love.  Furthermore, I could really relate to the frustrations of the lack of progress in physiotherapy and the temptation to push yourself before you and your body are ready, leaving to a great many accidents which I have also experienced during my time in physiotherapy and whilst at home.  Very often, when our bodies are at our weakest we adopt a “win” attitude.  By which I mean, we attempt to defy the weaknesses and challenges of our conditions and attempt to ‘run before we can walk’.  And by reading the book, it seems that both myself and Sarah have learnt that instead of trying to ‘win’ and suffering setbacks in the process, such as suffering falls and other accidents, we should instead accept the limitations that our conditions poses and adjust our lives accordingly.

The one thing that I loved and really took away from the book is how that despite limitations and various disabilities does not mean the end of doing what we love; that we can find different ways of doing things or taking part in activities which we never thought possible.  In the book, for example Sarah goes on a vacation with her family and before the accident she loved snowboarding on the slopes where they stay.  It’s at this point that she imagines that she will never be able to snowboard again, however after visiting a shop designed for those with disabilities she found that she may not be able to do like she did before the accident but there are ways in which she can still participate.  It’s this lesson that I have learnt for myself, and one which I am constantly learning as I am finding new ways of adjusting to the challenges that my condition presents.

Escaping the monotony and boredom of chronic illness…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Health Activist Choice Day 2!…Write about whatever you like

This past weekend saw the annual celebration of Easter.  And it was also a long Bank Holiday Weekend.  A lot of people revel in these long Bank Holiday weekends – it often means a long weekend off from work, and time spent with family.  Many people even go away on these Bank Holiday weekends, perhaps visiting family or going on day trips with family and friends such as the beach if the weather permits.  However, both my parents usually work on Bank Holidays, and therefore, this Bank Holiday I will once again be home alone.  Friends and other members of the family all have their own lives and plans for such weekend and so don’t like to impose; or often I am in too much pain, or the weakness and trembling in the legs is so bad that I am unable to go out anyway.

Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness

It can be so difficult when living with a chronic illness feeling isolated from the world.  In addition, it hurts when you see or hear other people’s plans or stories for Bank Holiday weekends and you are once again stuck inside the house because of chronic illness.  It is not only miserable to be stuck inside during the Spring and Summer Bank Holidays when the weather is beautiful and warm, but it is also incredibly miserable as there is never anything on television.  The usual choices on television are films which you have already seen several times, repeats of old episodes of various television programmes and trashy reality shows.

It is on days like these that the blues can set in especially if symptoms are severe and persistent.  So, the only thing to do is to make your own fun!  But what some ideas of what you can do on such days when symptoms are bad and you need to make your own fun because of one reason or another?  Here are some ideas that you can do on such days when energy levels are low but you also want some fun:

  • Movie Marathon: Think of your favourite actor or actress.  Who is it?  Sandra Bullock?  Tom Cruise?  Julia Roberts?  Whoever it may be, consider having a movie marathon of all the films that they have starred in!  Perhaps you haven’t got a favourite actor or actress; in this case you can watch films from your favourite movie genre.  For example, I love romantic comedies – they are fun, girlie and more often than not have a sweet, happy ending.  Perfect on days when you may be feeling blue.  So, get the DVD player ready, grab the popcorn and settle down on the sofa for some feel-good  entertainment
  • Pamper Yourself and give yourself some Love!: In my opinion, there is no better tonic when feeling low then to give yourself some well-deserved pampering!  Especially when it has been a tough time dealing with chronic illness, and you have begun feeling blue.  Have a lovely warm bubble bath using your favourite bath scent – for relaxing try lavender for example.  Or paint your nails a wild and bright colour.  I usually paint my nails a bright and colourful colour whenever I am feeling low; for some reason it cheers me up and puts a smile on my face no matter how bad I am feeling.  I have had several bad falls recently so I also like to give my poor, bruised legs a pampering my applying soft and comforting body lotion.  If you have some friends around for a night-in, you can even give yourselves facial masks whilst watching some films together – double the feel-good fun!
  • Take a Virtual Tour of a Museum: I know a lot of people love to visit a museum on Bank Holidays with their family or friends.  I love history myself and I love visiting museums to learn of a different period of history.  However, as energy is very often low due to chronic illness then walking around a crowded museum may be too much to handle.  The solution?  Take a virtual tour of a museum that you may have never been before.  There are plenty of choices around; for example the British Museum offers a range of different virtual tours on a variety of different topics in history.  Or if you are more interested in art then the Louvre has virtual tours on their website.  Try searching ‘virtual tours’ and see what is available and find a virtual tour which suits your interests.
  • Get Creative!: In my experience of making cards, being creative whether it be making decopauge cards like myself, or painting, drawing or writing can be extremely cathartic and can also be good at distracting yourself from pain, boredom or feelings of depression that can often accompany being alone or unwell. So, whether you are an artist or a writer, try getting creative the next time you are bored, or suffering from severe symptoms.  It’s cheap, and something you can even do from your bed if needed.
  • Enjoy your garden: When you are unable to get out of the house and enjoy a Bank Holiday at the seaside, for example, it does not mean you have to stay indoors feeling miserable.  Try sitting out in your garden, enjoying the sunshine whilst reading a book or listening to your favourite music on an MP3 player.  If stuck in bed, however, there are meditation exercises that involves you imagining that you are in a beautiful garden, beach or in your favourite place.  Meditation or relaxation exercises are an effective tool against chronic pain, depression and anxiety.  In my opinion, practicing such techniques are well-worth the time when living with chronic health problems.
  • Learn something new: This was suggested by someone I know via social media.  I had no idea that the internet allows you the opportunity to enrol in free online courses! I think this is such a brilliant thing for anyone struggling with chronic illness or disability; as often because of our conditions we are unable to get out of the house.  Many individuals with chronic health problems also do not work and as a result do not have the funds to access courses that charge and are often very expensive, however, there are a number of websites online that allow you to enrol on courses which are completely free!  So, if as a result of your chronic illness you are stuck in the house a lot of the time on your own and find that you become bored, then this is a perfect opportunity to learn something you have always wanted to take up but have been unable to because of the lack of money or because you are unable to leave the house due to illness. It may also be a great opportunity to distract yourself from pain, fatigue and other symptoms that affect your life.
  • Read a book: This is usually the first activity that I go to when alone, bored and feeling unwell.  Its cheap and does not require a lot of energy and thanks to my Kindle I have a number of books I have access too within easy reach.  In my experience, when you are engrossed in a book that interests you, then time quickly passes.

So those are some of my tips to pass the time; distract yourself from boredom, pain and other severe symptoms.  What other things that you can come up with to entertain yourself when alone in the house or just when you are too unwell to go out?  As ever I would love to hear your suggestions and thoughts so please feel free to add any comments below…

HAWMC 2013 Day 27: The Story of My Life….

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

If you wrote a book about your life, your community, your condition, or your health-activism – what would you title it?  Come up with 5 working titles.

Perhaps someday I may write a book about my experiences with my condition; certainly as writing is something that I enjoy immensely.  I am not sure whether the book will be of any interest to others however.   So, what are some of the titles that I could call the book that would chronicle the condition in which I live and the experiences that I have had living with it.  Let’s brainstorm:

Well, the first title that I have come up with is the title of this very blog ‘My Brain Lesion and Me.’  What a better title than that of the blog in which started me on the journey of writing and chronicling my experiences with living with the condition in which the book delves into.  The book is also quite self-explanatory and informs the reader straight away about the theme of the book.

Another title that I have brainstormed is ‘A Medical Malady.’  I have chosen this particular title as because of the many generalised symptoms that the brain lesion causes; meant that the condition went undiagnosed for many years.  For many years, I was sent to various specialists in many areas of medicine to try and get to the bottom of the cause of the severe chronic dizziness that I was experiencing.  And when this didn’t occur however, I was labelled as suffering with an anxiety disorder, in which the doctors put all my symptoms as the result of this particular psychiatric diagnosis.  I remember whilst at University and was undertaking a variety of medical tests and hospital appointments, after the dizziness became worse, a friend once said that I needed to see Dr. House from the television programme of the same name, as he would surely get the answers that I needed.  I was a medical malady indeed!

An alternative title could also be ‘Fractured Storms’.  I thought this was an interesting title and one in which is ambiguous; not letting potential readers in on the secrets that the book contains.  I often will pick up books with interesting titles; titles that catch my eye and makes me wonder what the book could be about!  The brain lesion is indeed similar to that of a fracture; of a scar lying within my brain stem and causing the ‘storms’ or symptoms that affect my daily life.  The storms causing symptoms such as the constant dizziness, episodes of vertigo, as well as the spastic paraparesis affecting my legs which results in pain, weakness and stiffness.

Another working title that I have come up with is ‘The Life and Times of a Neuro Patient’.  Again, this title instantly informs the reader of the subject matter of the book, and would be an instant interest for other neurological patients.  After making contact with other patients with other neurological conditions, I have found that there are many similarities regarding our experiences regardless of our differing diagnosis.  Very often people diagnosed with a neurological condition like me, have to wait many months before seeing a neurological consultant.  Recently, I have had to be referred back to the neurological department of my local hospital because of deteriorating symptoms, and have been informed that I have a six and a half month wait to be seen.  This however is not uncommon amongst neurological patients. How I wish that when I was first diagnosed that I could have read a book by someone who was also living with a neurological condition like myself; and whom also experienced similar problems that I was facing. I would have definitely bought a book that was entitled ‘The Life and Times of a Neuro Patient.’ 

And the final working title that I have chosen is ‘A Disequilibrium Life’.  Again, as most of you know, the dizziness and balance problems have long since been with me; ever since I can remember I have been battling dizziness.  Therefore, much of the hypothetical book regarding my life and my chronic illness would document the problems with dizziness, vertigo and balance, so the title should reflect this too.

So, what do you think of these working titles for the book regarding my life and battle with the long-standing brain stem lesion with which I live?  Which title do you like best?

As ever would love to hear your comments/suggestions, so please get in touch and comment below!

#spooniebookclub Review: ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties’ by Laurie Edwards

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I am very excited for the first #spooniebookclub which is to be held tomorrow night at 8 P.M. (GMT) over on Twitter.  The first book that was chosen was one which we will all would relate to – a book which examines what it is like to live with a chronic illness – and as we were all under the age of 30 – this book seemed to be the perfect fit for us all.

Interestingly, after a discussion with a fellow book group member; we both felt that the writing style of the author felt rushed and forced as if she was merely writing down her thoughts as they came to her.  However, what if we were to look at it differently – as patients, we often have to wait a long time for answers; to get a diagnosis, wait for appointments.  So, isn’t it refreshing for a book about chronic illness to get straight to the point; to be concise and compact.  Each chapter is short, making it very easy to read little chunks when the reader feels up to it.  Fantastic for those like me who tire very easily but still like to read before going to bed.

The book I found was very relatable and encompasses the chronic illness experience beautifully – the author cleverly also uses several other patients and their personal experiences of living with chronic illness; each with a variety of different conditions.  In my opinion, this was a very smart move, as the range of conditions which can be considered as ‘chronic’ is large, and by including a variety of different conditions, the books feel even more relatable – if you are not able to relate to one person for a reason, then there will be another person included that you may relate your experience to.

The book encompasses everything that a person living with a chronic illness in their twenties and thirties are likely to experience in their life – leaving college or university and starting the path to their chosen career; making and maintaining friendships; starting romantic relationships and sustaining them, as well as the experience of chronic illness – hospitalisations, the patient experience both in hospital and in the ‘real world’.  Much of the book, I found reflected on life in the hospital – and as a someone with a chronic illness that does not require frequent hospitalisations, I felt that it somehow didn’t apply to my experience of illness.  However, the author does describe how ‘one of the only predictable things about chronic illness is its unpredictability‘; which I feel captures my experience of chronic illness beautifully – I never know how I am going to feel hour by hour, or day by day; and furthermore find planning activities and social gatherings very difficult as I never know if I will be able to attend, and if I do, often need to cancel such plans as I feel to unwell to go anywhere.

The only problem that I found with the book, is the obvious differences between the healthcare system between the UK and US.  Some of the book talks about the major financial implications that chronic illness causes; something which thankfully, we living in the United Kingdom have to worry about.  However, in contrast to this, the author also describes the relationships and contact with her medical team – often with patients being able to email or have easier contact when needed – which unfortunately does not encapsulate the experience with doctors or nurses here in the UK – instead my experiences have been one of long waiting times to see a medical practitioner, and having the hardest time to speak to a doctor even on the phone when things have become bad.

Overall, the book is very well written, and with the concise and compact chapters, makes it very easy to read in small chunks.  Reading it, I found some of my own experiences being fed back to me, as if ‘finally, someone understands exactly what I go through’.  The book was very easy to read, and managed to read the entire book in only a couple of days and really delves into the experiences of chronic illness that matter most in your twenties and thirties.

 

Has anyone else read the book?  What were your thoughts of the book?  You can share them here or on the ‘Spoonie Book Club’ Page which you can access on the top of the page.  Or you can even join us on Twitter at 8 P.M. (GMT) to discuss the book using the hashtag #spooniebookclub.

On the 4th Day of Christmas….

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Welcome to the 4th Day of this re-working of the ’12 Days of Christmas’ chronically ill style – where we share for 12 days what we are ‘chronically’ thankful for twelve days using given categories (as shown above).

So on the 4th day of Christmas….I was given a book.  Just like with films, I am a huge book lover, some might even say a complete book-worm (seriously I have just finished a book which I only started under 24 hours ago!).   So, choosing just one book to say that I am thankful for is so tough!!

One of the most inspirational books that I personally, have ever read is that of ‘The Diary of Anne Frank’.  Of course, everyone knows the story of Anne Frank, and how her entire family and other Jewish associates were held up in a small flat in Amsterdam for over two years, in hiding from the Nazi’s.  This book, is a true testament to the strength of a young girl and other just like her, whilst also telling the horrors of the Holocaust.  The book is a great example, which demonstrates everything we often take for granted – freedom being the most obvious theme.  It is a book which is though-provoking and makes us thankful for everything in our own lives.

HAWMC Day 18: Open a Book…

Welcome everyone again.  It’s now Day 18 of the ’30 Days, 30 Posts Challenge’, and a new prompt to challenge us all Health Bloggers!  Today’s prompt reads:

Open a Book…Choose a book and open it to a random page  and point to a phrase.   Use that phrase to get you writing today.  Free write for 15-20 minutes without stopping.

Have been trying to decide which book I should choose for today’s challenge.  I was going to opt for a book by one of my favourite authors Jodi Picoult.  However, as I blog about my health condition, I thought it may be easier to choose a ‘Health related’ book to stay on topic of my blog.  Therefore, I finally decided on a book entitled ‘Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness’.

The book is said to give hope and effective coping strategies for those suffering with invisible chronic illnesses and making them aware of their attitudes towards their illness and how to communicate effectively with family, friends as well as their doctors in a way that meets the needs of the individual.  How to random choose a page, and to pick a sentence…

So, I randomly fell upon page 29 and choose the following sentence:

Invisible diseases can wipe out one’s self-confidence and peace and in their place leave painful doubts about one’s own sense of what is real.

Now that I have chosen at random that passage, I feel that sentence is one that I can relate to and one that could have been written about me.  After the dizziness started at age 8, I went through years of trying to search for a diagnosis, going through many blood tests to determine the origin of the dreaded dizziness.

When no cause could be determined, is when the doctor used the “it’s all in your head” card, and describing the root cause of the dizziness as being due to an anxiety disorder.  As a result, it made me feel that I was the one at fault, to be blamed for my problems.  As the dizziness slowly progressed and became so bad that I was unable to leave the house unless I was accompanied by another person, I was referred to the local Community Mental Health Team.  And so began endless classes and other sessions of Anxiety Management Techniques, Relaxation and Breathing Exercises to lessen the anxiety I felt when in certain situations and to lessen the dizziness I felt.

I did put all these techniques and other tips that I learnt into practice, and felt I certainly did feel less anxious when going out, although I still needed to be someone.  However, I found that the dizziness that I experienced did not lessen at all.

Therefore, to reiterate the sentence from the book that I had chosen – it really dented my self-confidence and made me doubt myself, “was the dizziness that I felt real, or am I simply imagining it? Am I really experiencing it?”.

After a time, I did begin to even doubt if the doctors were correct in their diagnosis and felt that perhaps the dizziness was caused by something other than anxiety.  However, I did not have the self-confidence to bring up my concerns with the doctors, and felt that perhaps that I was being a hypochondriac.  After all they are the professionals and know a lot more than myself.

It wasn’t until another healthcare professional I talked during a course I was participating in, also voiced her concerns about the dizziness, and talked about possible neurological causes.  Hearing this from a ‘professional’ than gave me that push to go and see a doctor about getting the ball rolling for a referral to a neurologist.  The doctor whom I saw however was unconvinced that I needed to see a neurologist – sometimes if you have been branded as a patient with ‘psychological problem’ then it is hard for you to be taken seriously.  It helped that I also had a parent in my corner acting as an advocate.  And then finally I got the referral I needed to see a neurological consultant…

And as they say, the rest is history!!….

I hoped you enjoy today’s post…Again, please feel free to comment…