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Inspired by Halloween and the podcast ‘10 Things That Scare Me‘ and the fantastic ‘10 Things I’m Afraid Of (With MS)‘ by Ardra Shephard (Tripping On Air.) I thought I would share my own 10 Things I’m Afraid Of, but with the added qualifier of ‘due to FND’. Because living with such a condition can invoke many fears and anxieties.

The temperatures are starting to drop, the air becoming cold and crisp. Leaves on the tree are changing colour, ready to fall onto the ground below. Autumn is definitely upon us, and as we near the end of October, Halloween is also fast approaching us all. The time of year when confronted with ghosts, ghouls and other scary creatures.

October 31st; Halloween a time to be frightened. But when living with a condition like FND you are forced to contend with fears every day.
October 31st; Halloween a time to be frightened. But when living with a condition like FND you are forced to contend with fears every day. Photo by Александар Цветановић from Pexels

A season that encourages us all to scare and be scared. Perhaps, the only one time of the year that we enjoy feeling frightened and in fear of everything spooky and supernatural.

Illness Makes You Afraid

When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween. Fear and anxiety yet another symptom of living with a chronic illness and ones which we don’t enjoy.

"When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween." Share on X
This list compiles 10 Things I'm Afraid Of Due To FND but in reality there are many more
Fear another symptom of living with a long-term health condition.

There are many fears that chronic illness can induce; fear of the future, fear of being a burden, fear of ending up alone, too name but a few.

Even from a young child, I have always been extraordinarily meek and nervous; picking up things to become afraid of came as easily as breathing. But recently, I have noticed that specific fears and anxieties became borne from living with FND. Perhaps those of you living with FND or other similar conditions will resonate with these fears.  But if you don’t then consider this an education into the everyday neuroses of someone living with a neurological condition. 

So here are the 10 things I’m afraid of due to FND.

10 Things I’m Afraid Of Due To FND

10 Things I'm Afraid of With FND

1) High Ceilings and Big Open Spaces

For as long as I can remember, I have had problems tolerating places that are big and open with high ceilings. Places including cinemas, large stores, museums and churches to name only a few. Part of the neurological disorder I live with includes issues involving the vestibular system. The vestibular system is the sensory system that largely contributes to the sense of balance and spatial orientation for coordinating movement with balance.

Damage or pathology of the system can induce vertigo, instability and loss of balance, and often accompanied by nausea. For those living with vestibular disorders, it can be tiring when attempting to sort out vision and balance signals. It can become even more difficult in busy and noisy environments such as large stores, crowded stadiums, in cinemas, or navigating busy, crowded streets.

"For those living with vestibular disorders, it can be tiring when attempting to sort out vision and balance signals. It can become even more difficult in busy and noisy environments…" Share on X

Such environments are challenging for a person with a vestibular disorder. It is difficult to rely on visual clues about balance and movement because everything is moving. The lighting isn’t ideal, and stable anchors such as walls are far away. And given that another of my symptom of FND includes trembling legs and so being so far away from walls or anything to hold onto is unnerving because of the fear of them giving way. It becomes more manageable, as a result, to avoid such places altogether.

2) Heights

It’s funny. I’ve never liked heights even from a very young age. I could never tolerate climbing frames or climbing up a slide in a playground. For years, I thought it was merely a phobia.

Balance is contingent upon not only the inner ear and vestibular system but also the eyes, sensors in the legs and feet. When the signals the brain receives from these systems ‘agree’, we feel balanced.

10 Things I'm Afraid of Due to FND: Heights
This would be unimaginable for a person living with vestibular issues when it causes dizziness and instability – not safe when up this high! Photo by Yeshi Kangrang on Unsplash

But sometimes the signals from these systems conflict. As we stand up high, for example, our eyes are unable to report the ground’s position accurately. It leads to the brain unable to receive accurate signals from the different systems, and not knowing which information to trust. As a result, we may feel dizzy, unstable and disorientated. FND already induces such symptoms, and so being up high feels like a very unsafe place to be.

3) Falls

No matter how many times I’ve experienced falls (which is a lot), I still have not got used to this regular occurring phenomenon of living with FND. They are unexpected, unpredictable, and most of all, it hurts. The consequences of such accidents leave its evidence on my body in the form of many bruises on various parts of my body.

"Falls are unexpected, unpredictable, and most of all, they hurt. The consequences of such accidents leave its evidence on my body in the form of many bruises." Share on X

The fear of falling in public is the worst part of living with a neurological disorder. The stares of people, even the well-meaning offers of help make the situation so much worse. They can make us afraid; afraid of going out and becoming fearful of our own body.

4) Rain

An indeed strange fear for someone living in a country where it doesn’t just rain, but it pours.  But rain and especially heavy downpours is something that I have become to loathe, and often fear.  But FND has unfortunately gifted me with the inability to shield myself from such surges.  Forced to navigate the world with the aid of a crutch, I am unable to hold onto an umbrella at the same time.  I have no choice but to withstand such conditions, becoming drenched as a result, with the wet clothes I am wearing sticking to my already cold skin.  The cold and damp begins to seep into my bones, increasing the pain that already exists.   Now, whenever I look out of the window, met with the sight of raindrops, my heart sinks, with going out an increasingly unwelcome prospect. 

10 Things I'm Afraid Of Due To FND: Rain
The cold and wet rain bring increased pain and so becomes another thing to fear when living with chronic illness and chronic pain. Photo by Vlad Chețan from Pexels

5) Being Cold

I’m cold right now, but I’m also afraid of being so in the future. I’m a person who feels the cold effortlessly, which is ghastly when the chill increases the severity of chronic pain, which is already constant and often horrendous. Pain that seeps down into the bones can feel as the bones will crack with its unkindness. So Winter and the cold temperatures that it will inevitably bring becomes something else to fear.

"The Winter and the cold temperatures it inevitably brings increase the pain already felt and so becomes something else to fear and dread." Share on X

6) Queueing

No, I do not fear to queue because I am impatient and unwilling to wait my turn. The trembling in the legs is constant, severe and unpleasant even when walking. But the feeling is even more relentless when my body is quiet in motion — the feeling worse when standing still, such as when standing in a queue. The fear that they will collapse becomes very real, and so queueing becomes something to fear.

10 Things I'm Afraid Of Due To FND: Queuing
Waiting in a queue feels like a nightmare for someone living with constantly trembling legs!

7) Loss of Control

Another big fear of living with FND or any chronic illness is the fear that you have lost control over your own life. A fear that we have been forced out of the driving seat, replaced by the new diagnosis. The plans for the future, both short and long term now put into the future. From one day to the next, hell even one minute to the next we cannot predict how we will feel. Or what we are capable of, and so we fear that we will never regain control of our lives. A fear that we will become so lost within pain and illness, that it will become all we are.

"From one day to the next, hell even one minute to the next we cannot predict how we will feel. Or what we are capable of, and so we fear that we will never regain control of our lives." Share on X

8) Going Out Alone

With the severity of my symptom, including trembling legs, constant dizziness, visual disturbances and unpredictable attacks of legs giving way, going out alone is not advisable. But there is also a fear of doing, so that holds me back. If my legs were to give way and left unable to get back up and I was on my own, then I would be left feeling scared and vulnerable. In the past, I have experienced episodes of losing my vision also. It can be frightening even in the presence of someone I know. I can only imagine the fear if it were to happen if alone. Sometimes even the thought of going out invokes fear.

9) My World Shrinking

FND can take a lot. There have been so many losses because of the condition, and as it has made my world smaller. As my mobility worsens, I become limited by the places where I can go, or even get to and my world shrinking further as a result. And so I fear the increasing limitations that FND imposes and the likelihood that my world will begin to become smaller and smaller.

"As my mobility changes, I become so limited; my world becomes smaller as a result. And so I fear the increasing limitations that FND imposes and the likelihood that my world will begin to shrink further." Share on X

10) The Unknown

10 Things I'm Afraid of Due To FND: The Unknown
Living with FND, or any chronic illness means that you are unable to see the road ahead; or what lies in the future. Worrying about getting worse or what else the disorder is going to wake from us next.

The biggest fear of living a neurological disorder like FND is the unknown. The condition itself is unpredictable. One which we never know when symptoms are next going to appear. And unable to predict what the disorder will take away from us next. Even from day to day, there is an unknown whether we will feel well or sick. Unpredictability becomes the norm, as illness wins, making it difficult to plan our days, our years or our lives.

"The biggest fear of living with FND is the unknown. The condition itself is unpredictable. One which we never know when symptoms are next going to appear. And unable to predict what the disorder will take away from us next." Share on X

And a fear of the future, afraid of what will become of me if I end up alone. And how I will cope and manage with no help.

Well, that is my list of 10 Things I’m Afraid Of (Due to FND). What are you afraid of as a result of the condition you live with? I’d love to hear your own thoughts.

10 Things I’m Afraid Of Due To FND

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For October, I have used the prompts to write about some of the lessons that chronic illness will show you. Lessons that incidentally nobody will warn you that illness will teach you.

“Patient’ defined as ‘a person receiving or registered to receive medical treatment.’ One that a person only identifies with when sick and in need of medical treatment.

When diagnosed with a chronic illness, a patient becomes a more permanent part of our identity. An identity that we gave to learn to juggle with many others. A new chapter of our lives, as we learn to wrangle new terminology and to learn to cope with unfamiliar symptoms.

Waiting While Living As A Patient and Learning What It Is To Be Patient

And as we become a patient, we also learn another definition of the word. Another explanation of ‘patient’ describes it as being ‘able to accept or tolerate problems, or suffering without being annoyed.’

Living with a chronic illness involves a lot of waiting and a need for patience.
Photo by Lukas Hartmann from Pexels

Because living with a chronic illness involves a significant time of waiting. You learn to wait and to wait with patience. It is a life consisting of waiting for symptoms and side effects to dissipate. It often means waiting for appointments to see doctors and consultants. For only then to spend a numerous amount of time waiting in hospitals for the appointment with the consultant to begin.

"Because living with a chronic illness involves a significant time of waiting. It is a life consisting of waiting for symptoms and side effects to dissipate. We are forever waiting for our lives to return to normal." Share on X

Waiting with the hope that the new treatment recommended to us works, waiting to feel better. And waiting for our lives to return to normal, waiting, waiting, waiting.

But when the symptoms don’t disappear; becoming stronger and more persistent, we begin to part ways with hope. As symptoms worsen, becoming a prominent feature in our daily lives, and with it, the glimmer of hope dwindling, the cycle of grief begins once again.

Parting With Hope Of Returning To Our ‘Old Normal’

As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our ‘old’ normal.

We learn to let go; accepting that we cannot change what is happening to us. Or the future and the inevitable progression of illness and the worsening of symptoms. We can only prepare for what lies ahead but refusing to let go and surrender before the inevitable befall us.

"As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our 'old' normal." Share on X

Nothing can prepare you for the destructive force that pain and other symptoms have on every facet of our lives. Illness dripping its poison into every corner of our lives. Nothing or no one can help you anticipate the misery that such symptoms cause, and the days where you want to give up. Unfortunately, there is no such handbook given on the day of a life-changing diagnosis. No such book is giving advice or instructions on how to cope and live with this new world of chronic illness.

No Alternative But To Persevere

Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere. When diagnosed with a chronic illness, they fail to disclose that persevering becomes a part of daily life along with pain and other disabling symptoms.

"Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere." Share on X

Life becomes about persevering through the crippling effects of chronic illness to achieve your goals, despite the difficulty when being in pain all the time.

"Life becomes about persevering through the crippling effects of chronic illness. It's persevering through every horrendous flare and tough periods that chronic illness continually delivers."

There are endless moments of continuing through new treatments and the horrible side effects, while not knowing if it will even be successful. And it’s persevering through every horrendous flare and tough periods that chronic illness continually delivers.

"Life becomes about persevering through the crippling effects of chronic illness. And it's persevering through every horrible flare and tough period that chronic illness continually delivers." Share on X

Self-Affirmations As A Weapon Against The Difficult Days

After a life-changing diagnosis, there is no one to tell you that to persevere and get through the tough days you begin to rely on self-affirming and motivational statements.

Bold and uplifting proclamations that say to the world ‘I can do it.’ These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity. A reminder that we had faced tough times before and came through, and we will do so again. They provide strength and reassurance when faced with a crisis, feeling weak and unsure.

"Bold and uplifting proclamations that say to the world 'I can do it.' These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity." Share on X

It can be hard to find self-worth, loving yourself when chronic illness sweeps in stealing what gives your life purpose. Affirmations remind us that we are not to blame, helping to eliminate feelings of worthlessness that chronic illness can create.

Loving Life Within The Bubble of Pain and Illness

When diagnosed with a chronic illness, nobody informs you that you will begin to hate your life. The constant symptoms, and all of the unknowns that now exists it is hard loving this new predicament. It often leads to dissatisfaction with life, as the losses due to chronic illness increases. Illness brings with it many negatives, and as such makes it difficult to find any positives within it.

"Self-acceptance is a daily struggle, as loving others is easy but finding love for ourselves is difficult.  Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are."

Self-acceptance is a daily struggle, as loving others is easy but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are.

"Self-acceptance is a daily struggle, as loving others is easy, but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are." Share on X

To thrive and not merely to survive, finding aspects to love and find satisfaction within life with a chronic illness is essential. To find love for ourselves, we must begin to accept those traits that we do like about ourselves. Yes, there’s no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments – moments to love and cherish despite the misery that chronic illness inflicts in the lives of those affected.

"Yes, there's no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments." Share on X

As a person who experiences many moments of adversity, they continuously teach me the meaning of the phrase ‘Tough times don’t last, tough people, do.”

A lesson that I am thankful I have learnt by living with a chronic illness.

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I will be musing on how this chronic life is very much like playing a continuous game of the classic board game ‘Snakes and Ladders.’

Life With Chronic Illness Is Like A Game of Snakes and Ladders

Do you sometimes feel that you are winning in life; landing on the bottom rung of a ladder, climbing further and further toward success and fulfilment. But only then for life to take a sudden downturn. Landing on a snake and forced to slide downwards toward despair.

Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak.

"Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak." Share on X

Unfortunately, during recent weeks, I have been finding more snakes than ladders in my chronic edition of the classic board game.

When living with chronic illness, and its numerous symptoms that affect us it can feel like continually finding the snakes in a game of ‘Snakes & Ladders’

Once again, the weakness and trembling in the legs have become worse. I have been finding myself on the floor, again and again, after my legs give way with no warning. Living with a neurological disorder is continually finding new bruises but having no clue of where they have come from, or how we arrived to develop them.

As such, I am also finding a significant decrease in my self-confidence. The weakness, debilitating trembling and the falls have made me afraid of my own body; no longer confident in its ability to keep me safe and free from harm. Fear causes tentative steps toward the unknown, toward unpredictability. And it is never-knowing when my legs will next decide to collapse from under me suddenly.

The Anxiety That Accompanies Illness and The Fear of What Could Be

Going out with trembling legs, aware of the unpredictability of such symptoms, and recognising that my legs could suddenly stop working at any moment causes anxiety. A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen.

"A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen." Share on X

The knowledge that the ‘what could’ happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built.

"The knowledge that the 'what could' happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built." Share on X

Every Day Needing To Find Our New Limits

Time and time again, I have discussed how life with chronic illness never changes; every day feels like the day before. That living with chronic illness can feel like you are living your version of Groundhog Day. The truth is, however, that not every day is the same; symptoms can come or go, or they can remain stable or get worse. In regards to the symptoms that accompany the disorder with which we live, every day is a blank slate.

Able to do that thing today? No idea! Only by research can we tell our capabilities for the day ahead. Photo by Emily Morter on Unsplash

And as such, each day we wake, not knowing the limits or abilities that we possess, and the restraints that illness now poses. So every day requires researching what our body can handle and what we can and cannot do. Tentative and careful steps every morning as hasty research into the current levels of pain. Or the current rate of mobility. A ritual performed every day even with the dreaded knowledge that it could change within a blink of an eye. There is a relief when the research suggests low levels of pain and relatively good mobility. But on the days where the pain is crippling, and walking short distances is difficult, we face the day with dread and apprehension.

Inability To Enjoy ‘Dates’ When Suffering Disabling Symptoms

Living with such debilitating and limiting symptoms means that dating is on the last thing on my mind. And it even if it were, I often feel that nobody would be interested in me. I often feel like a burden and not good enough. Being stuck in the house the majority of my time, due to disabling symptoms, when I do go out, I like to think of the trips as ‘dates‘ from my prison cell.

Although I appreciate these ‘dates’, and the time away from home, I have been unfortunately struggling with them lately, not enjoying them as I once did. It is challenging to enjoy days out when legs are trembling so badly and feeling completely weak that they might collapse at any moment.

Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. Afraid that today will be the day when legs will give way and suffering a humiliating fall in public. It’s enough to make you want to stay inside the safety of our comfort zone where our ‘dates‘ can include watching a film on the sofa instead.

"Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. It's enough to make you want to stay inside the safety of home." Share on X
Sometimes the only date that my fragile body and wobbly has the energy for, unfortunately!

And then there’s the overwhelming fatigue that such symptoms cause. The mere thought of going out even for a short while seems like being asked to climb Mount Everest. I was recently reading about the potential capabilities of energy recycling. A process where the energy that would otherwise be wasted and converting it into electricity or thermal energy -thereby enabling us all to reuse energy. It left me wishing that I could reuse lost energy which would allow me to do so much more than I can do currently.

"Oh, how I wish we could reuse energy something that would allow me to do so much more than I can do currently." Share on X

There May Be Snakes Now, But There Still Will Be Ladders Too

As I recount on the journey of living with a neurological disorder, there have been highs and lows. Unfortunately, like when living with any long-term health condition, the lows have outweighed the highs. In this life of ‘Snakes and Ladders,’ I continually seem to keep landing on the snakes, causing me to travel further from the place I want to be. Despite this, however, I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes.

"I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes." Share on X
September Link-Up Party with A Chronic Voice (Finding, Researching, Dating, Reusing, Recounting)

“My life is a perfect graveyard of buried hopes.”

– L.M Montgomery, Anne of Green Gables

A Life Raft to Save Us From Drowning In Despair

Whenever illness is at it’s worst; bringing darkness, a well-meaning person will often advise to “never give up hope.”

The promise of hope is a life-vest; the only thing that can save us from sinking into the depths of the abyss below. A light to drown out the darkness of despair and hopelessness that accompany chronic illness.

"The promise of hope can often seem like a light to help drown out the darkness of despair and hopelessness that accompany chronic illness." Share on X

Every morning, new hope is born. The unwavering desire that despite what our head tells us, we will one day get better. Hope that a cure or a more successful treatment is on the horizon. Hope that today will be the day when the medicine prescribed will suddenly work and successful in alleviating suffering. A hope that although the symptoms are a constant companion, their presence will not hinder our plans.

When diagnosed with a chronic illness you would think that hope would cease, but still, we continue to hope

With a diagnosis and the permanency of the chronic illness on the rest of our lives, you would think that hope would become extinct. However, it is not the case. Every day, regardless of the permanency of pain and illness, we hope.

Hope is often the thread that allows us to hold on and survive the worst of days.

"Hope is often the thread that allows us to hold on and survive the worst of days while living with the many symptoms that accompany chronic illness." Share on X

Hope, however, does not always provide the comfort and reassurance that it promises. We know our conditions well enough, to realise the idea of a cure or the promise of remission of our symptoms is improbable. But, the sliver of hope, these thoughts grant becomes intoxicating, and which we ruminate in our minds.

When Hope Only Leaves The Taste of Bitter Disappointment

Hope no longer brings the promise of sunshine and rainbows. Instead, when our hopes and expectations become defeated by illness, we are left with the bitter taste of disappointment. As the number of losses increases and the list of what we can no longer do becomes longer, hope becomes further out of our grasp.

Hope spelled out by scrabble times on a hand covered in dirt
We continue to hope for a cure or something to take away chronic illness, but often it is fruitless, ending in a graveyard of buried hopes

Hope creates incredibly cruel disappointment in the life of someone living with a chronic illness. Hoping that chronic illness will disappear begins a cycle of grief when year after year, its symptoms are still residing in our lives and with no intention of absconding.

"Hope creates incredibly cruel disappointment and a neverending cycle of grief when year after year chronic illness still exists and has no intention of disappearing." Share on X

While plagued with debilitating and unrelenting symptoms; symptoms that have such a profound negative impact on our quality of life sparks the hope that these symptoms will end. A desire for the end of the distressing and merciless symptoms and the expiration date handed to the current flare. But when upon waking and instantly met with the same crippling symptoms, the flame of hope extinguishes once more.

With each doctor’s appointment and the discussion of new medications and treatments, hope begins to bubble that these will what finally works and relieve the disabling pain. But when they don’t, and the search begins again for something that will, hope begins to fade once again.

When the flame of hope is extinguished time and time again, hope begins to dwindle, becoming hopelessness, sometimes even into despair.

"When the flame of hope is extinguished time and time again, hope begins to dwindle, becoming hopelessness, sometimes even into despair." Share on X

Aspirations For Life And The Future

Every one of us has hopes and aspirations, chronic illness or not. Growing up, we have aspirations toward a particular career path, or as we become older, our dreams include winning the lottery and the financial stability that it would provide.

To achieve such hopes and dreams, we prepare, taking steps to make them become a reality. We attend university for a degree to prepare for a career in our dream profession. In regards to winning the lottery, we are well aware that this is very unlikely ever to happen, so we learn to save to plan for the future. In these circumstances, we cannot rely on hope alone for us to accomplish our dreams. We cannot realise our dreams without preparing for reality.

When illness deteriorates, dreams and aspirations for the future can seem as futile as making a wish

When diagnosed with a chronic illness, we are expected to rely on hope to cope with our new reality. Many people tell us not to give up and to have faith. Discussions rarely include how to plan for a future with illness, or ways to prepare for this unexpected new reality. What is needed more than hope is an encouragement to be brave and how to nurture strength and resilience. And more importantly, on effective coping strategies to deal with the many ups and downs of living with a long-term illness.

"What is needed more than hope is an encouragement to be brave and how to nurture strength and resilience. And more importantly, on effective coping strategies to deal with the many ups and downs of living with illness." Share on X

When we accept the presence of chronic illness and the effects that it will likely have, we can make provisions and plans for when the inevitable bad days occur. Hoping that our bodies will suddenly heal only prevents us from cultivating the courage and resilience when healing doesn’t happen or continues to deteriorate.

And Hard To Find In A Life Of Illness and Suffering

When living with constant debilitating symptoms; symptoms that are often disabling hope is hard to find. Instead, we attempt ‘to fake it until we make it.’ We wear a mask and pretend that hope still exists despite the suffering that symptoms provoke. In doing so, we are not being truthful to ourselves or those around us and therefore not being authentic.

Today’s culture demands positivity. Between the memes and messages online and countless self-help books, all depicting positivity as the answer to all our problems. In a world in which authenticity is encouraged and celebrated, it is ironic that the same culture demands we face chronic illness inauthentically hiding behind hope and a faked smile. And in doing so, we feel uncomfortable and feel even more alone than before.

We live in a culture which seems to be obsessed with the notion of positivity, and which prescribe positive thinking as a cure for all our troubles
"In a world in which authenticity is encouraged and celebrated, it is ironic that the same culture demands we face chronic illness inauthentically hiding behind hope and a faked smile." Share on X

Despite all of this, however, doesn’t mean that I am without hope. Instead, I am letting go of hope for things that are not within my control, like my health, for example. Choosing instead to accept the way things are, living in the present moment and finding gratitude despite all the difficulties and adversities caused by illness.

Today my hopes are not extravagant are out of reach; often, I choose to hope that my health remains the same, and not to get any worse. I am hoping for further adventures on cruise ships (very likely to happen after booking one for October 2020).

Hoping for a cure or a miraculous disappearance of this neurological disorder have ended in my graveyard of buried hopes. If one day a cure is found for my condition, then I would very much welcome it, but it wouldn’t be because I hoped for it.

"Hoping for a cure or a miraculous disappearance of symptoms have only ended in my graveyard of buried hopes. If one day a cure is found, then I would very much welcome it, but it wouldn't be because I hoped for it." Share on X

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I will be looking at snapshots of a ‘chronic life’ if it was portrayed on screen.

Recently I watched ‘Unbroken: The Path to Redemption,’ the inspiring of Louis Zamperini. The film follows his return from World War II, and his ongoing struggles to adjust back to civilian life.

‘Film Based on Real Life’ – one of my favourite categories on Netflix

I particularly enjoy watching films which depict true stories of real people. I love movies which capture the real lives and real struggles of amazing and inspiring people. Films capturing the stories of overcoming great adversity are incredibly poignant for a person like myself, who is suffering from demons.

Capturing Life With A Chronic Illness

It has made me wonder what a film capturing the life of someone living with a chronic illness would entail. Would anyone even enjoy or be interested in a movie depicting a story of someone diagnosed with a neurological disorder?

My love for those films depicting the true stories of inspiring individuals made me reflect on what a film about someone living with a chronic illness would be life.
Photo by rawpixel.com from Pexels

The answer would, unfortunately, be no. The truth is that although life with a chronic illness is anything but ordinary, it is one that can be monotonous. In the film Groundhog Day, the life of the main character repeats on an endless loop. The protagonist destined to repeat the same day over and over again. And this description is very much like what it is like to live with a chronic illness.

The reality of living with a chronic illness, it that every day is a repetition of the day before; consisting of the same symptoms. And restricted by the same limitations that these symptoms create.

"The reality of living with a chronic illness, it that every day is a repetition of the day before; consisting of the same symptoms. And restricted by the same limitations that these symptoms create." Share on X

The beauty of the stories captured on screen is the vast array of different scenery; the varied locations in which the characters spend their time.

What would the snapshots of your chronic life show?
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For those who are chronically ill, the majority of the time we spend within the confines of the same four walls. And when we do venture, out, we do so too familiar and safe locations.

And much of the time is spent alone; alone in our suffering. When we do venture out, or see people, we only do so when we feel comfortable enough to be seen, or feel somewhat in control of our symptoms. Being in control of something, in life where we think we have very little control.

Financing Between What We Can and Cannot Do

In this mundane and monotonous existence of living with chronic illness, is a need for carefully financing between what we can and cannot do. We wish that we could live like those characters in our favourite films, but unfortunately illness and pain our ability to do so.

Living with a chronic illness requires the need to balance the books between what we can and cannot do…
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Instead, we must carefully budget the limited energy we possess to be able to carry out the most critical tasks on our to-do list. And still, we must ensure that we have enough energy for the next day. As we balance the books between illness and the rest of our lives, the losses we have endured become much more evident.

"As we balance the books between illness and the rest of our lives, the losses we have endured become much more evident." Share on X

Chronic illness, a constant thief, stealing abilities that once came so naturally. The continuous losses that we experience so cruelly are part of life with a chronic illness that we must grieve. It is not, however, a snapshot of this chronic life that we wish to be captured on screen for others to witness and study.

"Chronic illness, a constant thief, stealing abilities that once came so naturally. The continuous losses that we experience so cruelly are part of life with a chronic illness that we must grieve." Share on X

Chronic Illness: A Controlling Thief

Watching those characters in our favourite television show or films, they seem so confident; in control of their lives. When living with a neurological disorder, however, much of our control transferred to the disease itself. Symptoms are controlling our bodies, affecting every facet of our lives.

We must learn to accept that for which we cannot control. And to have the courage to change those things that we can. To let go of the life that we dreamed we have, and to embrace the reality of the new life that has entered our life unexpectedly.

"We must learn to accept that for which we cannot control. And to have the courage to change those things that we can. And to embrace the reality of the new life that has entered our life unexpectedly." Share on X

Exchanging Helplessness For Control in Defiance of the Uncontrollable

We wish we could exchange the feelings of helplessness for being in control in defiance of the uncontrollable. We desperately want to exchange our chronic lives and its debilitating symptoms for something better. A life that largely depends on surviving for a more productive and accomplished existence.

Living with a chronic illness requires constant adaptation, and with its growing what we can no longer do, we must exchange these for what we can. To live with life we can and to try and not dwell on the life we can no longer have. And the wish to exchange this new mundane life for one which is exciting and unique to be on the big screen.

"Living with a chronic illness requires constant adaptation, and exchange what we can no longer do with things that we can. To live with life we can and to try and not dwell on the life we can no longer have." Share on X

Illness Is A Motivation Killer

I have great admiration for those characters that demonstrate a great deal of motivation to improve their lives and the lives of those around them. Living with a chronic illness, however, find that my motivation ebbs and flows. It is easy to find the motivation to do something, do anything on those rare good days. On the days where symptoms are unrelenting, it is hard even to find the motivation to get out of bed.

When going through the tough times and find ourselves in the darkness, it can be challenging to claw ourselves out of the dark pit. The motivation to do anything is non-existent.

But dig ourselves out of the pit, we must, to rebuild a life worth living. It may not be the life we had planned, or a story worthy of an Oscar-worthy film. But it can still be a life that we can be proud of; it might not be a normal life, but it is ours.

"It may not be the life we had planned, or a story worthy of an Oscar-worthy film. But it can still be a life that we can be proud of; it might not be a normal life, but it is ours." Share on X
August Link-Up Party With A Chronic Voice: Snapshots of A Chronic Life
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