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A Chronic Illness Edition of Snakes & Ladders

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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)
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Chronic Illness and Its Graveyard of Buried Hopes

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“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
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Snapshots of A Chronic Life

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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?
Photo by Porapak Apichodilok from Pexels

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…
Photo by Jessica Lewis from Pexels

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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Thy Enemy Chronic Pain

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Note: While this post is sponsored by Pathways, all opinions expressed are my own. In addition, I am not a medical professional, but the information within the post has been researched and is from credible sources. Always seek advice from your doctor before undertaking any new treatment.

Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel..

– Lady Gaga

Pain – The Bully

If I imagined chronic pain as a person, a nasty and vicious bully immediately springs to mind. Like a bully, chronic pain likes nothing more than to torment and makes it’s victim’s life a living misery. It wants nothing more than to lurk in the shadows, waiting to strike and to make its presence felt.

"If I imagined chronic pain as a person, a nasty and vicious bully immediately springs to mind. It wants nothing more than to lurk in the shadows, waiting to strike and to make its presence felt." Share on X

It’s unpredictable and cruel, making its victim fearful, becoming hypervigilant and waiting with bated breath for the next sudden appearance. Every day is unknown, every day waking up and not knowing if this bully will emerge from the shadows to put a dampener on the day ahead and ruin the jovial mood.

curled up in a foetal position because of pain
Pain makes you fearful and afraid of the day ahead, never knowing when it’s going to make a sudden and unexpected appearance

What once brought joy and excitement no longer induces such happiness. Now only exists constant apprehension of the potential appearance of our bully. We do anything to try and avoid the ‘bully’ and evade potential torment and hurt.

Pain: A Mortal Enemy

When pain becomes constant, however, it not only seemingly becomes our whole life, but it becomes our closest companion. A companion that never leaves our side for even a moment and is with us through it all. It is relentless and all-encompassing. This constant and closest companion is no friend; however, no it has become our mortal enemy.

Due to its never-ending negative effect on our lives, it is so easy to view chronic pain as an enemy; a bully that torments and making life difficult
"When pain becomes constant, it becomes our closest companion. A companion that never leaves our side for even a moment and is with us through it all. It is no friend; however, no it has become our mortal enemy." Share on X

We are all familiar with the phrase, “Keep your friends close, and your enemies closer.” The implication being that we should know our enemies well. When chronic pain becomes a constant enemy, however, we have no choice but to keep it close. It is an enemy that exists within us, an extension of our body and one which knows us intimately. Perhaps to ‘overcome’ and deal with our enemy, we need to research and learn about them and how they work. By doing so, can give a greater sense of control and reducing feelings of powerlessness against the enemy. Knowledge is power.

"Perhaps to deal with our enemy, we need to learn more about it…By doing so, can give a greater sense of control and reducing feelings of powerlessness against the enemy. Knowledge is power." Share on X

Learning About Pain

On my quest to quiet the intense pain that has been viciously bullying me, I have been getting to know the mechanics of pain itself. For instance, I have learned that the body’s pain system acts as an internal danger alarm. One that is incredibly useful for acute pain such as a stubbed toe, for instance.

When pain becomes chronic, it is as though the volume on the internal alarm has been turned up; stuck on high-alert. Any perceived threat or danger can cause the warning system to be triggered.

"The body has an internal danger alarm to alert us when pain occurs. When pain becomes chronic, however, it is as though the volume on this alarm is now stuck on high-alert." Share on X
woman holding hands over eyes
Chronic Pain occurs as a result of an overactive pain warning system – an alarm triggered by any perceived threat or danger

Central Sensitisation of Pain: From Acute to Chronic

Research has shown that the experience of chronic pain changes how the nervous system works. When pain lasts more than six months, the brain and nervous system become more adept at creating the sensation of pain.

Through repetition, we become more accomplished at a new skill or habit. The body works in the same way. The more the brain and body practices creating pain, the easier it becomes for it to create the sensation again.

"Through repetition, we become more accomplished at a new skill. The body works in the same way. The more the brain practices creating pain, the easier it becomes for it to create the sensation again." Share on X

As the pain continues, the brain and nervous system become overprotective. Pain becomes self-sustaining; being felt more as a result of your beliefs, thoughts, expectations than the physical condition of the body or injury itself. A process by which the medical community calls Central Sensitisation.

"As the pain continues, the brain and nervous system become overprotective. Pain becomes self-sustaining; being felt more as a result of your thoughts, than the physical condition of the body or injury itself." Share on X

When living with chronic pain, it is easy to come to see our bodies as the enemy; like a bully with the sole aim to torment. But, after learning more, I now realise that it is a system only trying to protect us. Pain is only trying to be our friend, albeit it a very protective one. Our body is working overtime at protecting itself with this overactive pain response.

Pain: Enemy or well-disguised friend?
"When living with chronic pain, it is easy to come to see our bodies as the enemy; like a bully with the sole aim to torment. But the truth is, pain is only trying to be our friend, albeit it a very protective one." Share on X

There are steps that we can take to help our pain system become less protective and thereby lessening the amount of pain experienced. Treatment that can help unlearn these patterns and help the brain reduce the neural pathways that create pain. A process by which is known as neuroplasticity.

Tools To Help ‘Rewire’ The Brain And Reduce Chronic Pain

Mindfulness and Meditation

There has been much research conducted on the benefits of mindfulness and meditation for those living with chronic pain. Evidence suggests that both mindfulness and meditation can help relieve pain by creating structural and functional changes in the brain. Research has shown that several areas of the brain become larger after meditation. Areas which are essential in the body’s fight or flight response.

Further research has also suggested that mindfulness meditation outperforms a placebo in pain reduction. It does so by activating two specific brain regions associated with self-control and deactivating the thalamus. The finding is significant as the thalamus helps determine which sensory information is allowed to reach other brain centres.

Using Food for Healing

According to science, our brain’s use approximately 20 percent of our body’s energy. And energy comes from the food that we eat, and to function well; therefore, we need high-quality nutrients. To help facilitate changes in the functioning of the brain, a diet containing brain-healthy foods is essential. Foods such as walnuts, raw almonds, leafy greens, dark chocolate, and fish high in Omega-3 can help boost brainpower and increase neuroplasticity.

Get Moving

We all know the benefits exercising has on mental and physical health, but it can also help retrain the brain. Research has found that exercising for 30 to 45 minutes, three to four times a week increases oxygen and blood flow to the brain. The increased oxygen and blood flow provide additional energy for the brain, which in turn makes it easy for neuroplastic changes to occur.

Learn Something New

When we learn something new, especially those that utilise both sides of the brain, it stimulates brain growth. Such activities include learning a new language or playing a musical instrument. As the ‘whole brain’ use increases, this capacity spills over into other areas of brain function and makes creating new neural connections and pathways an easier process.

Pathways Pain Relief App

The Pathways Pain Relief App is a terrific digital resource on neuroplasticity. The founder, Sandip Sekhon, a former chronic pain patient himself and who knows all too well the benefit that neuroplasticity can have in relieving chronic pain. It has become the most comprehensive online pain therapy programme available; including over 60 online pain therapy sessions and additional custom sessions depending on your level of pain and condition.

Within the programme, there are five main modules, which include:

  1. Pain Relief Essentials
  2. Supercharge Pain Relief
  3. Deep Stress Relief
  4. Happiness and Gratitude
  5. Mindfulness and Meditation

Within each of the modules listed, are various physical and visualisation exercises, educational materials, and interactive quizzes. Each of the sessions is informative, easy to understand, and easily digestible, even if the pain is making following anything complicated. The app has been well thought out and executed as there are both audio recordings and written transcripts available for each session. And the little quiz at the end is an excellent way of making sure that you have taken in all of the critical information, and more importantly have understood it all.

Overall the app allows you to learn all the information and tools to help get you started on rewiring your brain in a fun and positive way. The app’s jargon-free language makes the process of neuroplasticity much less intimidating.

"The Pathways App allows you to learn the information and tools to help get you started on rewiring your brain in a fun and positive way. The app's jargon-free language makes the process of neuroplasticity much less intimidating." Share on X
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What can fiction teach us about living with chronic illness?
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Chronic Illness Life Lessons From Fiction

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Fiction. Whether it be through books, television, or film, it allows us to inhabit a world away from reality. To reside, and experience life through the eyes of fictional characters beyond the existence of the chronic illness.

The ability to escape into fictional worlds away from the grim reality of pain and illness is a welcome relief. However, as this reality is isolating, we often crave for fiction to become a mirror; one that reflects our feelings and experience and the truth of living with chronic illness. To spend time with characters with whom we can relate. Those that make us feel less alone, in a world that makes us feel alone in our struggles.

"We often crave for fiction to become a mirror; one that reflects our feelings and experience and the truth of living with chronic illness." Share on X

Lack of Representation of Chronic Illness in Books and Mainstream Television

The problem, however, is that there is an evident lack of representation of chronic illness in books and mainstream television. The portrayals that do exist do so at the end of two opposing spectrums. Either they paint the very worst-case scenario or a tear-jerking account of triumph over adversity and sugary optimism. There seem to be few realistic depictions of the stark, painful truth of life with a life-long condition. Those living with such afflictions either portrayed as brave and inspiring. Or otherwise painted as being fragile and in need of taking care of by others who are more capable.

"There seem to be few realistic depictions of the stark, painful truth of life with a life-long condition. Those living with such afflictions either portrayed as inspiring. Or they are otherwise painted as being fragile." Share on X

Sadly, there is room for improvement regarding the representation of chronic illness on television. Firstly, there seems to be a distinct lack of characters exhibiting chronic conditions on mainstream television. When there are, however, it does so with little realism of the truth of what living with illness entails. When a television series announces a storyline regarding chronic illness, is met with interest and anticipation. Very often, however, it turns quickly to disappointment. Such storylines hold great promise, at first, successful at raising awareness of the issues portrayed. However, as the storyline ends, there is very little continuation surrounding illness and its impact.

"Storylines featuring chronic illness at first are successful at raising awareness, but often there is very little continuation surrounding illness and its enduring impact." Share on X

Illness Remains Invisible and Ignored in Fiction

Chronic illness remains invisible and ignored in its representation in fiction. In a way implying that those struggling with chronic illness are not tragic enough to be seen or their voices heard. We want content that can guide us, and give us direction on how to live well with chronic illness. We want fictional characters to whom we can look up to and learn how not to be dictated by disease.

"Chronic illness remains invisible and ignored in its representation in fiction. In a way implying that those struggling with such issues are not tragic enough to be seen or their voices heard." Share on X

However, that is not to say that we cannot relate to or find lessons within fiction that do not feature chronic illness. The following are books and television characters that have taught me about how to cope with a neurological disorder.

"These are the books and fictional television characters that, although they do not feature chronic illness, have still taught me about how to cope with living with a neurological disorder." Share on X

What Can Fiction Teach Us About Living With Chronic Illness?

Little Women: We gain strength and resilience from the storms in life

A classic book that has been my favourite reading material since I first read it as a young child. A book that resonates, as the four March sisters navigate their way from childhood to become young women. Each aware of their strengths and weaknesses and make their tumultuous journey toward womanhood to become the best version of themselves.

There is one quote that as someone living with the adversity from illness has continued to resonate.

The lesson of the growth and resilience gained from living through the painful times of living with chronic illness

The quote is apt for someone navigating an uncertain future.  Living with chronic illness, we experience many ups and downs, thrust into flares and severe exacerbations in our symptoms.  This quote reminds me, however, of the growth and resilience gained from the difficult and painful moments in life.  Enduring a flare as distressing and painful as it is, it also helps develop improved coping skills in time for the next one. 

"'Little Women' has taught me the growth and resilience gained from experiencing difficult and painful moments as a result of chronic illness. It's continued presence helping to improve useful coping strategies." Share on X

Les Miserables: There will always be a brighter tomorrow

Most famously, the longest-running musical ever, it is, famously based upon the book written by Victor Hugo.  A story of love, loss, and revolution, the characters struggle to overcome great adversity.  A story in which the characters begin to lose hope due to the struggles they endure. 

The lesson of the hope for a brighter and happier tomorrow despite the darkness and pain of living with chronic illness

When facing continuing battles and worsening symptoms, it is too easy to lose hope.  However, there is one quote that inspires, declaring that tomorrow is a new day and in which holds new beginnings. The quote is a reminder that no matter how hard the struggles we face, there is a chance for a better tomorrow.

"Despite the gloomy tone of 'Les Miserables' it is still one that inspires hope for a brighter and happier tomorrow." Share on X

Harry Potter Series: Hope and positivity can help bring us out of the darkness

Like for many, the Harry Potter series of books became a staple of my adolescence and young adulthood. These books delighted both children and adults alike, comprising many life lessons within its pages.

The lesson that although we cannot control what happens to us, we can choose on how we respond

Living with the difficulties and limitations illness entails, it can so easy to succumb to the darkness; remaining there when we are no longer able to cope with the pain. However, Dumbledore reminds us that we all contain the power to bring ourselves out of the darkness with a spark of hope. Although we cannot always control what happens to us, we can choose how we respond to circumstances beyond our control.

Of course, these books also taught us to believe in magic!

"Harry Potter contains many powerful and profound lessons. As someone living with chronic illness, Dumbledore has taught me that although we cannot control what happens to us, we do have the choice on how we respond." Share on X

Oliver Queen (Arrow): You are stronger than you believe

It can be hard to find anything relatable in characters from comic books, or the ever-popular superhero shows.  Featuring characters who can swing above rooftops, or can fly or travel at the speed of light, makes these fictional worlds unrealistic.  What makes Oliver Queen, or the Green Arrow interesting is that he is one of the few superheroes without any superpowers.  And a common thread in the origin stories of superheroes is that with suffering comes an opportunity to learn and be better. 

As someone living with chronic illness, it can be challenging to relate with such characters. Unlike the repercussion of their crisis, we do not gain superhuman powers or abilities. The gift of the suffering of illness is the awareness that we are stronger and more resilient than we ever believed we could be. Living with the plight of debilitating symptoms, we do not know how strong we are until we have no other choice but to be. Oliver learned this during his own five years in hell. As without inner strength, he would not have survived, and not becoming a hero as a result. 

"Living with the plight of debilitating symptoms, we do not know how strong we are until we have no other choice but to be. Something Oliver Queen learned this during his own five years in hell." Share on X

Temperance Brennan (Bones): Always be unapologetically you

Crime dramas are my favourite genre and continue to be fascinated with the methods used to provide justice for victims.  One of my favourite procedural shows is Bones. ‘Bones’ is the nickname of Temperance Brennan, a forensic anthropologist who examines bones to determine how a person died and by whom.  I found her to be a truly inspiring character, impressed by her brilliance.

In one episode, her partner Booth takes a photograph of her weeping over a dead body thanks to pregnancy hormones.  When Booth dismisses it as normal, she protests in her usual emphatic fashion that “I’m not normal, I’m extraordinary.” 

It’s a beautiful reminder that we should not apologise for who we are. And that we should celebrate everything that makes us the unique individual we are.  For years, I felt ashamed of the person I am; the person illness made me. But, Brennan and all her quirks teach us to celebrate who we are unapologetically.

"For years, I felt ashamed of the person I am; the person illness made me. But, Temperance Brennan and all her quirks teach us to celebrate who we are unapologetically." Share on X

Brennan is aware of her worth and not ashamed to boast of her best qualities and achievements. Maybe we could all take a leaf out of her book!

Jane Doe/Remi/Alice Kruger (Blindspot): We do not have to be defined by what happens to us

When we first meet Jane, she is crawling out of a duffel bag in the middle of Times Square. As she emerges, she is completely naked apart from the intricate tattoos that cover her whole body. Suffering from drug-induced amnesia has taken away Jane’s knowledge of herself and everything she once knew.

When I first watched the pilot episode, I found that I resonated with Jane. When diagnosed with a life-long condition, there are many unknowns and questions to navigate. Just like Jane Doe. Through the course of the series, Jane begins to find herself despite her lack of memories. Jane even becomes a part of the FBI team investigating her and the tattoos that points them towards criminal investigations.

The show reminds us that we do not have to be defined by the significant life-changing experiences that we face. The story is a lesson that we can choose not to be defined by chronic illness. There is much more to us beyond being ill. Something which Jane herself learns when she discovers new abilities which include fluency in several languages and a talent for hand to hand combat. Instead, we can forge our chosen path in life. Just like Jane, we can choose the person we want to be, instead of being determined by illness.

"'Blindspot' reminds us that we do not have to be defined by the significant life-changing experience that we face. It is a lesson that we can choose not to be defined by chronic illness." Share on X

I would love to hear your thoughts; what have you learned from a fictional book or characters?

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