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Chronic Illness

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Imagine walking down a busy street.  Look at the faces of the people walking past you in the street. Every one of those people will currently, or at some point in their history has faced a battle. One of them may be living with a battle that I currently face; a battle of living with an invisible illness.

Invisible Battles, Known Only To Those Fighting Them

Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other conflicts, however, are invisible; concealed from everyone else, like a deeply hidden secret – a struggle known only by the person carrying the burden of the fight.

There are so many fights when living with an invisible illness
Be kind; for everyone you meet is fighting a hard battle.

I am one of those people who is fighting an unseen, invisible fight.  If you were to see me, you would never know that I have a neurological condition — the only signs being when I am staggering along with my crutch.  Or on the days where weak legs confine me to the use of a wheelchair, even then I am met with stares silently asking why I need such aids.

"I am one of those people who is fighting an unseen, invisible fight—an invisible battle of living with an invisible illness." Share on X

For Me It is Not An Invisible Illness, It Is My Life

The personal fight I face as a result of my neurological condition although may not be visible to others, for me, however, is very real.  For me, it is not an invisible illness; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will buckle, although no one can see.  For others, the world is still, unmoving.

The world in my experience, however, seems off-balance. As though everything is slightly tilted. At other times it seems as if there is constant motion.  Every day I fight against fatigue and for the ability to do everything that everyone often takes for granted. Such as being able to go shopping, take a shower or cook a meal for the family.

"For me, it is not an invisible illness; it is my life." Share on X
Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them
“Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Every day is a battleground between myself and my body.  Like with any battles in history, there are times I am forced to surrender. Such as those days when my legs are so weak. Or the dizziness so severe that I am unable to get out of bed.  The days I am forced to surrender to my condition and stay confined to my bed.  That’s the thing about living with a chronic illness; it is often a balancing act between surrendering to our symptoms and fighting against them.

"Every day is a battleground between myself and my body." Share on X

The Fight Against The Assumptions of Others

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, people greet our new circumstances with understanding and compassion, friends and family make allowances for our limitations.  As time passes, however, the understanding and compassion dissipate, replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.

The grievance at the chores still left untouched as illness still will not allow me to attend to them. My parents, although supportive and understanding will sometimes feel embittered at finding certain chores untouched. Some days have to be waived for a day on the sofa due to debilitating and unrelenting symptoms. And they are unaware of this as to look at me, you only see a healthy woman.

To Live With An Invisible Illness Instead of Surviving

It may seem that the neurological condition takes a significant amount of space in my life; it, however, does not own or control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition. Particular baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

The Fight of Invisible Illness
A profound quote from Tangled!

This unseen condition may fight for control for every facet of my personal life.  Now, however, I have chosen to fight back. Although I have not won control for every area of my life, I have elected to manage aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

'Fight Song' is an empowering one for those living with invisible conditions
‘Fight Song’ is a song that is on my self-care playlist
"I have chosen to live side by side with my condition instead of merely enduring life with it." Share on X

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’.

Well, this is my first post for well over a month.  I apologise for my long absence and lack of writing, but unfortunately, once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs, for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking have been particularly difficult.

Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days, however, it made me realise the importance of pacing.  Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in overexertion.  Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.

Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words, we may find we are able to tolerate certain activities on some days but not on others.  Despite this, however, pacing is often regarded as the most appropriate self-management strategy that helps us remain as active as possible whilst avoiding overexertion.

On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?

But in reality, it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine.  Despite this, however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions
Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take, for instance, a trip to a retail park that I took with my carer.  A retail park with a plethora of shops to peruse at length.  This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.

Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse.  As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.

The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion!
Retail Park just like the one I managed to visit – take that brain stem lesion!

For me, it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip.  Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home.  And why?  I had exceeded my energy limit and overexerted my body’s limit.  I had failed to listen to my body and did not use the wheelchair when I probably should have.  And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing.  When living with chronic illness, we often find that severe and unrelenting symptoms including pain, dizziness, and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.

To live a successful life despite chronic illness, therefore, we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

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A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life
A new bracelet to remind me to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.

To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.

To not be defined by our condition but rather be defined by the successes that we achieve despite it.

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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