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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…

Living with chronic dizziness is hell.  The unpleasant sensation of having your whole world constantly moving even when still takes everything away from you.

Your friends, social life, independence, career plans to name but a few are lost when chronic illness strikes.

Long-term illness pecks away at your identity; taking pieces of things that make you-you: the friends you meet, the places you like to socialise and your hobbies and interests.

For me, living with this neurological condition has taken a lot, and one example of something that it has taken for me is being able to go to the cinema and watch a film.  High ceilings, flashing strobe lights, fluorescent lights are just a few delights that can worsen the severity of the dizziness that I endure constantly.  Furthermore, they can also be triggers for other symptoms associated with the brain stem lesion such as vertigo and visual disturbances.  As someone who loves films this is an incredible loss; I mean sure, I can still watch them at home but there is nothing like going to the cinema and watching films on the big screen, is there?

A couple of weeks ago, however, saw the release of the new Nicholas Sparks film ‘The Longest Ride‘ and as a fan of his books and the adaptations that have been inspired by his works, I just had to try and push myself to go and see the movie.

My ticket for a showing of 'The Longest Ride'
My ticket for a showing of ‘The Longest Ride’

As a result, my carer and I attempted for the first time in several years to visit the cinema.  And I am happy to say that I managed it; successfully staying in the theatre to watch the entire film.  I would love to say it was easy, but like everything with living with a chronic condition, it was not.

The dizziness at times was so severe and my vision kept becoming blurry.  All my instincts was telling me to leave and go somewhere my symptoms although would still exist, would be less severe.  But the love of the film, and the beautiful story that unfolded during the two hours (and was also helped by the gorgeous Scott Eastwood).

The film was a beautiful love story about love itself but also the sacrifices that are made for it.

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This achievement may seem like a very small feat given the fact that going to the cinema is an activity that many people partake in every day.  Healthy people often take being able to go to places such as the cinema for granted as for me living with a neurological condition, it was a big a challenge as someone attempting to scale an enormous mountain.  So, for me personally this was not a small feat, it was a huge win for me in the conflict that chronic illness has created inside my body.

During the course of watching the film it was not only dizziness, vertigo and the visual disturbances I had to contend with but also severe neuropathic pain in my legs (not helped by the lack of leg room) and the trembling in the legs made it difficult even being able to physically walk to the cinema itself.

I was thinking of the film long after it ended, and kept thinking of its title ‘The Longest Ride’.

For me, the title was defined by the enduring love between the two characters, Ruth and Ira.  But it also got me thinking about its meaning in my life.

Living with chronic illness in itself is a long ride.  The term itself is clear of this as the definition of the word can be used to refer to an illness which persists for a long-time or is constantly recurring.
From the onset of symptoms, living with a chronic illness is a long ride, consisting of endless doctor’s and hospital appointments, persistent and recurring symptoms (and often the onset of new ones) as well as the ceaseless days of feeling frail and sick.

Imagine an extremely long and persistent road, well, living with a long-term condition is often like making the long ride down this road, and which often feels like there is no end.  The journey towards diagnosis is even a long ride itself, with repetitive appointments with consultants leading to disappointment as medical tests fail to answer the one question we want answering – what is wrong with me?

Living with chronic illness can often feel like travelling on a long road with no end in sight...
Living with chronic illness can often feel like travelling on a long road with no end in sight…

And even after the diagnosis has been confirmed, chronic illness allows the long ride towards not only acceptance of the diagnosis but also to learn how to live with and manage the symptoms of said chronic illness.

Thinking back to the film, and the gargantuan achievement of going to the cinema despite experiencing such unpleasant symptoms that for one makes it extremely difficult to sit and watch a film but also has previously stopped me from enjoying such perks as trips to the cinema, has made me realise that we should not allow our conditions to take full control over our lives.

Yes, chronic illness is bound to take pieces of our old lives and identity and change them, however, we should not allow our illness to stop us from doing things that we love.

Yes, the cinema trip was demanding on me physically, affecting me even days afterward, experiencing a flare in severe symptoms, but it was still worth the trip.

Not only did I manage to watch a film that I desperately wanted to see, but I also defeated my condition reminding me that I am stronger my condition.

Now, I just need a little reminder of the film and the cinema trip to pin to my positivity board to serve as a reminder of the defeat over the dizziness and my neurological condition/  I was thinking of a postcard of the film poster or something so if anyone has any ideas or anything please get in touch!

And if any of you, love romantic films then I would thoroughly recommend ‘The Longest Ride’.

Friday 1st May: You did it!

You’ve crossed the #HAWMC finish line. Recap the past month for us.  What did you enjoy, what didn’t you enjoy?  Favourite prompt?

Well, I have come to the end of the road of this year’s Health Activist Writing Month Challenge.

As in previous years, it has been a challenge.  After receiving the prompts, there was a moment of mild panic, wondering how on earth I was going to write meaningful and relatable blog posts that people will want to read, be able to relate to, as well as writing something original especially as some posts were from previous years.  Have I done this?  I am not sure, only the readers can answer that question!

I needn’t have worried, however, once I got started, the words just came out on paper, like it was an involuntary response.  Some days I could not even stop writing and desperately tried to shorten my posts!  I rediscovered a passion for writing, which illness had taken away recently due to the worsening of some of the symptoms I experience daily.

Writing during this challenge, however, has provided respite from the debilitating symptoms; an outlet for everything that I have experienced and feeling as a person living with chronic illness.  I hope that through writing, I can be an advocate for those also living with neurological conditions and highlight the impact that these can have on those living with them.
Some of the prompts were more challenging than others and often struggled with the appropriate way to tackle the question.  I felt a deep sense of accomplishment and pride when completing those challenging prompts, and was just one of the many achievements that happened during this year’s HAWMC.

Other milestones included publishing my 300th post, and an increase of traffic and likes on my blog, which is a real validation of the work that I have done.  But again, one of my favourite aspect of this annual writing challenge is reading the entries from the other participants in the writing challenge.  To learn about other conditions other than my own, and the impact that they have on the lives of the writers.  It is interesting to hear other perspectives on what it is like to live with a chronic illness, and furthermore, it is always a surprise on the similarities in our lives with chronic illnesses despite being diagnosed with very different conditions.
The only disappointment of the challenge was not being able to complete one of the posts.

I was experiencing a very bad day and was therefore unable to write anything.

Instead, I shared the post that I had written the previous year, but at the time I felt like I had failed in the challenge.  But the support I had from fellow participants and readers of my blog, made me see that I had not failed and needed the day to recuperate and reset my body.  It made me see the importance of self-care and the need of rest when we are not feeling our best.  To put ourselves before other commitments.

I would not say there were any prompts that I didn’t like; I really enjoyed them all, particularly writing about the positive impact that my dog Honey has had on my life.  Which of this month’s posts have you had enjoyed reading?

As ever I would really love your comments and thoughts on this year’s HAWMC!

Get in touch through the comment section below or through my Twitter or Facebook pages (links in the header).

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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.

Thursday 23rd April: Health Activist Choice 

Write about whatever you like!  Got a great story, opinion, or tip to share?  Tell us here.

On days like today, when we are giving free rein to what we can write about, it can be difficult to know what to say.

Add, a very bad day because of debilitating symptoms and it’s even more difficult.

I looked through books and pages on the internet, but due to the way I was feeling, all I really wanted to do, was to throw on a pair of pyjamas, crawl into bed and stay there for the foreseeable future (or at least until the symptoms subsided to a manageable level).

And then it hit me! Why not write a post about pyjamas?

In my opinion, pyjamas are very often the top of a spoonie’s wish-list.  In my experience, when I am doing some online shopping, or on the rare occasions I venture into clothing stores, I am always browsing the nightwear section and lusting after more lovely and comfortable pyjama sets.

And why is this?

As a spoonie myself, it often seems that when I am experiencing a bad flare in the severity of my symptoms, as I am experiencing currently, then I spend a lot of time wearing pyjamas.

Even when I haven’t worn pyjamas for the entire day, I still like to get changed into mine straight after dinner!  My perfect day would involve wearing pyjamas whilst enjoying a film and munching on some popcorn!  Bliss!

Pyjamas, you could say are the uniform for the chronically ill!  There are several different reasons for this:

  1. The fatigue is so bad that we do not have the energy (or spoons) to get washed and dressed
  2. They are so much more comfortable and comforting than regular clothes
  3. They are easy to put on and are warm
  4. They are fun!

Fashion bloggers are always providing us with new inspiration on the latest fashions and advising us what to buy.  But, unfortunately for spoonies, pyjamas are often left out, so I thought I would share some of my favourite pyjamas:

Duvet Day Pyjamas – Next £26
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These sum up the spoonie lifestyle brilliantly, don’t they?  Everyone needs a duvet day sometimes, but these days are much frequent when living with a chronic illness.  Perhaps a pair to wear on bad days that tell friends and family that you are struggling.

Stripe Slogan Pyjamas – Next £18
967-433-X55s
I love these PJ’s as soon as they saw them as it immediately made me think of my cruise that we are going on in September!  And the slogan provides a little bit of positivity which is very much needed during a flare or relapse

Butterfly Print Pyjamas – Next £16
888-841-G24s
I could not resist adding these as they have butterflies, which as you all will know by now is one of my favourite things!

Florence + Fred Butterfly Print Pyjamas – Tesco £10

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Need I say any more?  And with ‘Do Not Disturb’ adorning the top, it’s a great way of telling people to stay away when life gets tough (know how sometimes we need to be left alone and be by ourselves when things are really bad).

F + F You are My Sunshine Pyjamas – Tesco £10
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I saw these and thought they would be a lovely gift to put inside a care package for a person with chronic illness.

Very practical as PJ’s are always desired and needed when living with a chronic illness, but also remind them that they are loved and well-though of.

Those are some of my favourite pyjamas that are out there at the moment – what are yours?  And you love pyjamas as much as I do? Would love to hear your thoughts!

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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.

Friday 17th April: Health Tagline 

Give yourself, or your patient experience a tagline.  Grab attention with your slogan.  Make sure it’s catchy!

To come up with a tagline to encapsulate the patient experience or life with chronic illness is extremely onerous.  There are many facets to life with a long-term health condition; some good and some bad.  How on earth could we summarise everything that we have to face every day in just one sentence?

If we could turn back the clock and given some medical literature about our condition, what would we want the tagline of the pamphlet to be?

I know after, I was given a diagnosis of a long-standing brain stem lesion, my thoughts were consumed on the long-term aspect of the condition.  My thoughts were preoccupied with knowing that my life will never be normal again and that no amount of medications will eliminate the symptoms caused by the neurological condition.

Therefore, I would want to read a slogan that could alleviate the fears of being diagnosed with a long-term condition, as well as providing hope that although life will be forever changed, and certain aspects of our lives might be lost, there are still plenty to look forward to and experiences that we can still take part in, and so on.   My slogan would envision hope and positivity despite the unclear outlook for the future.  Also, as my neurological condition is rare, and therefore any support for a condition like mine is non-existent, I wanted a slogan that is inclusive; a slogan that encompasses everyone living with a chronic illness, regardless of the diagnosis.

A friend was recently struggling herself due to her own diagnosis, and wanting to do something nice for her, during her time of need, I sent a card and letter.  In the letter, I wrote “Rainbows and sunshine can still be found even in the darkest of times“, and so I would choose this as my slogan.  I know the tagline does not specifically relate to me, or my patient experience, but it does cover something that we all need at times – and that is hope.  Hope for a better tomorrow.

A Slogan of Hope for anyone living with a chronic illness
A Slogan of Hope for anyone living with a chronic illness
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