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2016: A Year of Hope

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Presents have all been ferociously unwrapped, the Christmas decorations have been taken down, and 2015 has been erased to make room for a new start that 2016 promises us.

Just like in the sand, 2015 is being erased to make way for 2016
Just like in the sand, 2015 is being erased to make way for 2016

It’s been a time of reflection, in which we acknowledge the people, events, and the changes that helped to define what the year has meant to us, as well as a time to look forward to the future and all the hopes and possibilities that it may bring.

In my notable absence from blogging, I have been experiencing some of the lowest points in my journey of living with a neurological condition.  The pain and trembling in the legs has been so bad that it has almost overpowered everything else; overpowered in a way that concentrating on anything has been increasingly difficult.  There have been so many moments that I wished, like a faulty computer I could simply press CTRL+ALT+DEL to reboot my troublesome limbs.

From Pinterest
From Pinterest

Consequently, most of the Christmas period was spent on the sofa, doing my shopping online and enjoying the overly cheesy and sentimental films that the festive season brings. Of course, all of these festive films are all essentially different versions of the same clichéd premise: chaos ensues into the lives of the film’s protagonist only for it to eventually remind them what is important in life as they emerge from it a better person.

It's A Wonderful Life is the ultimate Christmas film
It’s A Wonderful Life is the ultimate Christmas film

Furthermore, these Christmas films, also emphasises the importance of hope.  The hope for a happily ever after.  The hope of children that the myth of Father Christmas is real, as well as the hope of presents under the tree on Christmas morning

The concept of hope and acceptance is important in the chronic illness community and one which I have mentioned in previous posts.  The hope that despite chronic illness and its limitations upon our lives we are still able to find purpose and carve out a successful and fulfilled life.  That is not to say that we all hope for a miraculous recovery or cure from our ails, as this very often the case would be extremely remote, but hope for a better tomorrow despite the circumstances of our lives.

This year I choose hope...
This year I choose hope…

It is strange that before the deterioration of my symptoms within the last few weeks of 2015, I had thought I had reached acceptance of my condition and wore hope like a badge.  However, like items such keys or our mobile phones, hope and acceptance can become mislaid and we are once again navigating the ‘stages of grief’.  It is a continuous cycle of ups and downs in which our journey to acceptance starts again and again.

We are now at that time of year when New Year Resolutions are made and trying to be kept!  Often these resolutions are not meaningful, unattainable and are completely out of reach of our expectations.  But what if we focused on how we would like to feel during the year instead of what we would like to achieve?  By focusing on our ‘core desired feelings’ we are much more likely to achieve our goals (if these goals are consistent with how we want to feel).

Many people are doing this by creating a ‘one word‘ for the year.  A word to focus on every day for the 366 days of 2016.  One word that perfectly epitomises who we want to be or how we want to live our lives.  The choice of the word is important as for the year, it will become a compass in life, as it directs your decision-making and guides you through each day.

My word for the year is…HOPE.
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I had thought that HOPE is something that I live with every day, as I live with the neurological condition.  However, after reflecting on this last relapse, and its effect on my emotional health, I realise that like many other people experiencing difficult times, hope is something that I feel is out of reach.

However, during 2016 I would once again like to pick up the torch of hope and run with it for the duration of the year and through the finishing line at the end of this year. Yes, hope is often difficult during the trying days with a chronic illness.  But I also think that hope is an important word for those navigating life with chronic illness, as if one has hope then it can lead to many other things, such as acceptance and peace for example.  William Wordsworth once said ‘not without hope we suffer and mourn’, and I for one agree as in the times I have been without hope during my own personal journey with illness, life was much more difficult; mourning for an old life that was no longer mine to live.

This year, I intend to focus on the positives despite living with a long-term condition.  To appreciate and embrace the small achievements made and accept that these small steps have an impact no matter how insignificant, and furthermore to see these small steps as building blocks to bigger achievements.

I am starting this new positive and more hopeful outlook by creating my own ‘happiness jar’ in which I am going to write all the good and positive things that are going to happen during the next year.   These notes will be then placed in the jar and on New Year’s Eve, only then I can open the jar and marvel at all the wonderful events that have shaped the year.

Image: Pinterest
Image: Pinterest

I would also like to see this year as a blank slate.  To not look at the past failures and bad times that 2015 saw, and get caught up with the things that I did not achieve, but rather see the new year as a fresh start, with endless possibilities and opportunities to explore.

And as I experience bad days due to unrelenting symptoms, I will focus on my one word and remember that it is just a bad day, but it does not have to mean that the entire year will consist of days like them.  I will focus on hope and move forward with life; neurological condition and all,

What is going to be your word for 2016?

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Experiencing Instead of Wishing of Better Days…

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Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.

On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.

On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.

Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!

On this day, however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out.  I made the decision, not to make plans, but instead, if I made it to the cinema than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.

The cinema, as expected did not happen thanks to the unrelenting symptoms that were severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.

At first, I was thoroughly disappointed in myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.

Although at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case.  I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.

Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time
Perhaps by winning certain battles in our lives with chronic illness, we can find ways around certain problems to win the battle another time

Chronic illness often wins many battles in our lives; however, it does not win all of the battles.  There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.

Think about the last very bad day you had due to chronic illness…

  • Did you still manage to get out of bed?
  •  Go for a shower?
  • Do small chores around the house?

If yes, then congratulations, you triumphed over your illness.

It’s a small victory, but a victory nonetheless.  We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.

That is partly the reason for choosing to go out when it would have been easier to stay within the confines of the four walls where I feel safe when the symptoms are it’s worse.  I did not want my neurological condition to control my life and dictate how I spend my time.  I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.

Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them.  That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:

we know what we are, but know not what we may be

We know what our lives are with chronic illness and as an extension who we are because of it.  Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives.  Who we can be when we refuse to let illness have the main spotlight in our lives.

If we did, who knows where we may end up?
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The (Positive) Memory Book

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During my absence of blogging, I have once again been indulging in my love of books and burying myself in the pages of the books that have been on my to-read list for some time.  Prior to this, reading had been somewhat problematic due to the severe dizziness and visual disturbances, that I have been experiencing, and for a while it seemed that my love of reading was another thing that my illness had taken away from me.

However, although the dizziness is still bad and still experiencing visual disturbances, they have eased enough for me to start reading again.  One book that I have recently read was the excellent and highly emotional read, ‘The Memory Book’ by Rowan Coleman.

The gorgeous cover of a wonderful and moving book
The gorgeous cover of a wonderful and moving book

The book tells the story of Claire, a beautiful, intelligent and vibrant forty-something.  Mother to two wonderful children, Caitlin aged 20 and Esther aged 3, and married to Greg, the man of her dreams.  Claire, however, is also living early onset Alzheimer’s Disease, and after watching her own father overcome to the disease, Claire is all too aware that life for her and her family will never be the same.

Greg, her husband then buys her a beautiful notebook, which becomes ‘The Memory Book’ in which Claire and other members of her immediate family to record their own personal memories of the life that they had together, as well as mementos that have had significant meaning in their lives.  The book is not only for Claire to use as a memory aid but also for the entire family to cherish and remember the life that they all shared together.

The story made me think of my own life with chronic illness.  Living with a variety of symptoms such as pain, fatigue, dizziness as well as the problems with my legs, all associated with the neurological condition I live with, I have no need for a book to help me remember my life with my condition.  However, often when we are struggling because of not only the physical effects of illness on our bodies but also the psychological effects on our minds, we are often however in need of positive reminders of life outside our bodies and outside the walls that chronic illness creates.

So, how about creating our own gorgeous notebooks, but instead of filling them with memories of our lives. we create pages of everything that help us to remain positive, mementos of happy times and everything else that makes us happy and fills our lives with joy!

Example of a beautiful memory book on Pinterest
Example of a beautiful memory book on Pinterest

Such items could include favourite uplifting and positive quotes and affirmations that bring comfort during difficult periods of your life.  Postcards, photographs and other mementos from holidays of a lifetime.  Letters and cards from friends and family including words of love and encouragement. Lyrics from your favourite song. Objects and pictures which evoke positivity and happiness or are reminders of achievements that have been gained despite illness; reminders that we are more than our illness.

Anything and everything that will help keep your spirits up during difficult periods in your life, such as during bad flares or relapses due to chronic illness.

Much research has shown the positive effects that writing and keeping a gratitude journal can have on our health, and in my opinion, a memory book like the one I have described is a natural extension of that.  A  personal beautiful, hand-crafted positive memory book to look through when living with chronic illness feels like too much to handle, I think will help us bounce back from negative emotions and strengthen our happy memories.

The finished positivity book is not the only benefit, but the ability to become creative to produce something meaningful can also be therapeutic when living with the effects of chronic illness as it allows an outlet for all of our thoughts and feelings regarding life with chronic illness and the new limitations that it has placed in our lives.

I have been wanting to create my very own scrapbook for a while, to fill with all the beautiful quotes and affirmations that I have found during my days out with my carer, as well as the ones sent to me by other spoonies and after reading ‘The Memory Book’ it has inspired me to start my very own (positive) memory book!

Now I just need to buy all the materials I may need…

If you were to create your very own positive memory book, what items and mementos would you include?  Have any ideas I could use for my own book, then shoot me a message as unfortunately I am not very artistic or creative so would like to make it as easy as possible!  And for all you book-worms out there, then I would really recommend ‘The Memory Book’ by Rowan Coleman, it’s a wonderful read…

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HAWMC Day 26: Navigating the Ups and Downs 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 on given prompts.

Sunday 26th April: Make it a great day!

Life is full of ups and downs.  Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going.  Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There is saying that says ‘Life is like a rollercoaster.’  And this saying, perfectly sums up what it is to live with a chronic illness.

Every day there are many ups and downs as a result of our chronic illnesses.

There are plenty of ‘up’ moments, little moments that make the day worthwhile and gives us a reason to smile.

However, inevitably there are just as many ‘down’ moments, usually as a result of the onset of symptoms, and other effects that are a result of living with a chronic illness.

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It is true that we as individuals have control over how we are feeling and therefore influence how our day is going.  However, as those of living with a chronic illness will relate, often our symptoms and our long-term health condition very often dictate the type of day we are going to have.

Take yesterday, for instance, as my Mum has the week off from work, we were planning a trip to a local out-of-town shopping centre, which I was really looking forward to, especially as trips out, particularly those with Mum and Dad are rare.

However, on the morning of the planned trip, I awoke feeling exceptionally weak.  During the night, I experienced excruciating pain in my legs, and in the morning, I found that they were weak and barely strong enough to hold me up, never mind being strong enough to allow me to walk around shops for most of the morning.

Furthermore, the constant dizziness that I experience as a result of the brain stem lesion was exceptionally intense.

As a result, therefore, I felt that I was too unwell to go on the planned trip, and instead spent most of the day lying on the sofa beneath my comforting duvet whilst my parents went shopping.  It was disappointing and frustrating not being able to do something that I was so looking forward to, and just one example of not being in control of how our day is going.

So, on these bad days, and the days in which we have no control over our day as a result of illness, how can we help change our frame of mind to make a bad day seem less so?  Here are 5 tips that can help change our day:

  • Practice gratitude: In my experience, using a gratitude journal and practicing gratitude can greatly help change our mindset.  In these gratitude journals, it is useful to write at least 3 good things that happened to you during the day no matter how small or insignificant they may seem.  In my experience, in my doing so it helps to change your negative mindset into a positive one, and furthermore, it also helps to make you appreciate the little gifts that each day delivers.

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    Rewarding yourself: After a long day battling with symptoms such as pain, nausea, dizziness is a feat in itself! By planning to reward yourself, for getting through a difficult and stressful day, or for finishing a task despite dealing with debilitating symptoms it can help to give yourself something else to think about besides the symptoms currently being experienced.  Rewarding ourselves gives us something to look forward to despite the stresses of living with chronic illness. The reward does not need to be big or expensive; sometimes it’s finding pleasures in the little things in life.  My favourite reward?  A delicious bar of chocolate to savour at the end of the night!

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  • Listen to a favourite song and sing along!: Research has shown that listening to music that you like can actually alter your mood and alleviate feelings of depression.  Therefore, make your own ‘Feel Better’ playlist in your Mp3 player that includes songs that work for you and which lifts your mood.  Choose positive and uplifting songs that you can sing along to, such as the brilliant ‘Happy’ by Pharrell Williams.  It could really help change the outlook for the day!

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  • Honour yourself and your body: On these days, where we feel that we have no control, is the most important time to practice some self-care.  It is important to practice these rituals when we need it the most.  Nurture yourself by taking a warm bath, schedule a massage, cozy up with a book, or relax with a cup of tea and enjoy some quiet time.

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  • Smile!: Research has shown that in fact smiling really can turn a frown upside down.  When things seem bad smiling can actually make us feel more positive and happier about the situation, so let’s all try smiling!  And surround yourself with positive people and positive things – the positivity board that I have set up in my bedroom really does help when I am experiencing bad flares as a result of my condition.  It is a reminder that the negative situation is not permanent, it’s only temporary and as everything that is brief, it will soon pass.
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HAWMC Day 2: There is more than one key to unlock happiness….

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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 given prompts.

Thursday April 2nd: Key to Happiness 

What do you think is the key to happiness?  Is it being able to overcome a hard time?  Laughter?  Maintaining a positive attitude?  Tell us what you think and why.

Happiness is simply defined as ‘the state of being happy’.

The definition itself may be universal but the meaning behind the word is different for every individual.  Just like we all have different likes and interests, what makes us happy is different for all of us.

However, modern life has taught us that happiness is contingent upon our accomplishments, and not having any troubles to speak of.  On this basis, therefore, a person such as me living with a chronic illness which causes a lot of troubles in my day-to-day life, should not be happy. This is cannot be further from the truth as many of the happiest people whom I have known over the years as had to endure some sort of hardship of some kind.

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“Happiness is a journey not a destination” is a fantastic example of the depiction of happiness in our modern lives; we are so focused on the end result which we think will bring us happiness, we forget however to appreciate the simple day-to-day pleasures.  We are too busy rushing around to see the beauty of the world around us.

One of life's simple pleasures
One of life’s simple pleasures

Living with a chronic illness, at times can be exceptionally difficult due to wavering severity of symptoms and the rollercoaster of emotions it evokes.  However, I  also believe that living with a chronic illness can also allows us to stop within our daily lives and appreciate the simplest of pleasures such as the relief of a warm bubblebath or our favourite song playing on the radio.  Chronic illness can cause us to enjoy and appreciate the journey rather than focusing on the destination as many do due to the demands of modern living.

Finding simple pleasures to enjoy and allowing them to bring happiness is just important key to happiness, but as often the door to happiness is often locked to us when we are struggling and experiencing difficult times, there is always more than one key to unlock the door and find happiness on the other side.

Choose Hope and Happiness
Choose Hope and Happiness

One other important key is remaining positive and embracing hope.  Surrounding myself with positivity and the favourite inspirational quotes that adorn my bedroom helps to keep the light on during my darkest days and gives me hope for a brighter tomorrow.  They are not a miracle cure for the down days that I often experience as a result of living with a neurological condition but they are a reminder that these feelings and the severity of the symptoms at that particular moment, are just that a fleeting moment in a much longer series of moments.

But more importantly, happiness cannot be bought or be given by materialistic objects but by those people we are surrounded by, who give us comfort and support when we are in need of it most and also by the little moments of pleasure that makes life worth living (despite living with a chronic illness).

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