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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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Balancing The Scales Between Guilt and Rest

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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 discussing the need to rest and the guilt that comes with needing to do so.

Balancing The Need to Rest And The Guilt For Needing To Do So

When living with a chronic illness, we do so in an attempt to balance our own set of balancing scales. And every day, we are faced with choices; choices that will inevitably tip the balance in favour of either ourselves or to the chronic illness itself. Every decision, every activity, every chore, and errand is strategically planned in the endeavor to stave off a flare. And to keep the scales tipped in our favour.

"When living with a chronic illness, we do so in an attempt to balance our own set of scales. Every day, we are faced with choices; choices that will tip the balance in favour of either ourselves or to the chronic illness itself." Share on X

Participating in self-care, and adopting strategic pacing techniques plays an essential part in ensuring the scales remain balanced. The problem, however, that although chronic illness plays a significant role in our lives, it is not the only part. Life does not stop or pause when during a flare; life goes on, and still, we have responsibilities that we need to satiate.

When living with chronic illness we often need to balance the need to rest with the guilt of needing to do so

Justifying Taking The Time For Rest

As such, it can be difficult justifying taking time to rest when there is so much that needs our time and attention. How can we justify the time for rest and recuperation when chores and errands require attention?

Often we feel that the severity of pain and the never-ending presence of other symptoms are enough justification for slowing down. For lounging around and taking it easy while attempting to wrangle and maintain control over seemingly uncontrollable symptoms. But as these quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise.

"As the quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise when needing to rest and take things easy." Share on X

Although taking the time for recuperation against the backdrop of a flare is essential to our health and well-being, the overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention.

"The overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention." Share on X

The Starting Symptoms Which Precede A Flare

There is a tendency to push through to complete errands regardless when symptoms start to become out of control. To stubbornly ignore the start of an oncoming flare and do more than our body can handle. But, doing so, however, only worsens these ‘starting‘ symptoms and thus exacerbates the approaching flare.

We should begin starting, to see these increased symptoms as warning signs. And to start to listen to what our body is telling us. To attend and rest or participate in self-care activities when we are in need to do so.

"We should begin starting to see these increased symptoms as warning signs. And to start to listen to what our body is telling us." Share on X

Illness And Pain: A Brutal Teacher

But how do we learn the subtle signals our bodies are telling us? Experience. As C.S. Lewis once wrote, “Experience: that most brutal of teachers. But you learn, my God do you learn.” And there is no more a brutal teacher than pain and illness.

Experience: that brutal of teachers. But you learn, my God do you learn.

As much as experiencing a flare is horrendous, each one can teach us about living with chronic illness. The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest. And as such, when resting when needed, we can learn to lessen the impact of future exacerbations.

"The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest." Share on X

It is not only the analysis of the signs and symptoms preceding an upcoming flare that can be useful. It can also be helpful analysing those behaviours and actions that help minimise the destructive impact they cause. For instance, having a relaxing, warm bath may help alleviate pain. Or watching a favourite film or TV show can help distract from the extremely bothersome symptoms that plague everyday life.

Analysing Pain and Symptoms And Concluding On How To Deal

Whatever it may be, by analysing the results of self-care behaviours, we can then determine what and what does not help when we are in a flare. Concluding, everything which does and does not help in reducing pain or the impact of other symptoms makes coping with such intense and debilitating flares more manageable. Furthermore, interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future. It may not help stop a worsening, however, but doing so could help minimise the impact it would otherwise have had.

curled up in a foetal position because of pain
"Interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future." Share on X

Experience and the ongoing analysis of the accompanying symptoms of chronic illness can also help us conclude when something is not right. After living with constant illness for so long, we become somewhat intimate with our body, and know when something more is going on and need medical intervention.

Planning On Moving Forward; Planning For Future Flares

And when we know that which helps us cope, both physically and emotional we can plan for the next flare. Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being. And it also allows the opportunity for planning a flare kit. A flare kit is one in which contains the essentials that help calm and please. Comforting items that help you to cope during a time of suffering.

"Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being." Share on X

After experiencing numerous flares over the years, I have learned the importance of planning rest. And planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another.

"I have learned the importance of planning rest and planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another." Share on X

And we must also learn to let go of the guilt when in need of resting. Chores and errands can always wait, but looking after our health and well-being should always be our priority.

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‘A Day in the Life’ With FND

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This blog post is part of A Chronic Voice’s ‘A Day in the Life’ Linkup. I am answering the questions provided to share a day in my life as someone living with Functional Neurological Disorder.

In brief, illnesses and/or disabilities I have:

I live with a neurological disorder known as Functional Neurological Disorder (FND). A common neurological disorder by all accounts, but one which few people have even heard of the condition.

A disorder such as FND has a profound effect on daily life. It can affect mobility, daily activity levels, sleep patterns and so much more.

There are no structural abnormalities present in the brain of the individual with FND. The problem lies with the functioning of the nervous system and how the brain and body send and receives messages.

It is a disorder that has a profound effect on my daily life. It affects my mobility, daily activity levels, sleep patterns, and so much more.

"FND has a profound effect on my daily life. It affects my mobility, daily activity levels, sleep patterns, and so much more." Share on X

Where do you come from? How accessible is your city/town?

My life with FND occurs in a village in South Wales. Many of the amenities that exist and the nearest bus stop are more than a mile from where I live. As a result, and due to the mobility problems that occur, I spend most of my time at home. I have to rely on other people to be able to leave the house due to the severity of my symptoms.

Even if a bus stop was closer to my home, due to the seriousness of trembling in the legs, I am not able to stand for long. Therefore public transport is not accessible to me. The accessibility of where I live for me and my condition is minimal.

My first thought and/or sensation when I become conscious in the morning:

Upon waking in the mornings, every morning, I am met with the sensation of trembling in the legs. The severity of this sensation may not be the same every day, but it is always present; perhaps one of the only certainty of living with this condition. Before I attempt to get out of bed, I also take the time for a quick body scan. A scan to scope any odd sensation or gauge the level of pain I am experiencing at that moment in time. As well as noting the likelihood that the dizziness or any one of the other numerous symptoms I experience is going to be problematic for the day ahead.

"The severity of the trembling in the legs may not be the same every day, but it is always present; perhaps one of the only certainty of living with this condition." Share on X
FND can often cause my mornings to be a nonstarter; legs buckle and give way from under me with nothing more to do than return to bed until the strength and functioning returns.

As I gently pull myself out of bed, more often than not, my legs immediately give out. I end up in a heap on the fall, sometimes ending up with bruises and scrapes as a result. All there is to do is haul me back into bed and wait until the strength in my legs returns.

How long it takes for me to go from zero to functioning, if at all:

Every day is different. The length of time to go from zero to functioning varies from day to day. Generally, it takes anything from half an hour to two hours before I can get out of bed, and ready to tackle the day.

"Every day is different. The length of time to go from zero to functioning varies from day to day." Share on X

What my morning routine is like in general:

My immediate morning routine consists of taking the prescribed medications to help control the crippling symptoms with juice or a glass of cold, ice water.

The morning process of having a shower and getting dressed takes some time because of the crushing pain and fatigue that exists. As well, of course as the constant trembling and shaking in the legs. A shower stool is a necessity when having a shower, therefore, and rest is a necessity before being able to get dressed.

Best and worst times of the day in terms of pain, fatigue, etc:

Mornings, therefore are the worst times of the day in terms of pain and fatigue. The lack of physical movement and any pain medication during the night, making the muscles feel weak and lethargic. Nights aren’t any better either, however, as the busyness of the day and the physical activity takes its toll. It often causes debilitating pain and weakness, particularly in the legs, making sleep difficult to encounter. As a result of not getting restorative sleep the night before, fatigue is once again present the next day. The cycle continues.

curled up in a foetal position because of pain
Both the mornings and nights are tough when living with chronic pain

The late morning and early afternoons are then the best times of day, and although pain is always present, the decrease in fatigue means that I am able to get the most done.

What I consider a daily self-care must do:

I consider taking the time for a nice, hot shower a daily self-care must do. It allows me to ‘wash away’ yesterday’s troubles out of my system and preparing me for the day ahead. The time also allows for some pampering by using luxurious products which help me to look and feel good. It is important to look after mental health just as much as the physical side when living with chronic illness.

"A hot shower a daily self-care must do. It allows me to 'wash away' yesterday's troubles out of my system and preparing me for the day ahead." Share on X

The household chore I have the most trouble with:

While my parents are at work, I do the household chores that I can still do and does not use too much of the limited energy I have budgeted for the entire day. Ironing is the household chore I have the most trouble with due to the length of time required to stand. Doing so takes a considerable amount of energy; as I stand, I can feel the force and strength of the trembling inside my legs. On some occasions, my legs have given way in the middle of ironing.

A task I wish I had more help with:

If there was a task that I could have help with then I would choose ironing as it can be dangerous with unpredictable legs like mine. Or a cleaner to help around the house would be great too.

The part of the day I like best:

My favourite time of the day is between 2.00 and 3.00 in the afternoon after my Mum returns home from work. It’s a lovely time of the day where we can catch up with each other’s goings-on. It also allows time to catch up on missed programmes, which as a TV addict I very much enjoy.

What’s breakfast, lunch and dinner typically like:

How do I manage when it comes to food and life with FND? Due to the overwhelming pain and nausea that accompanies it in the morning, it means that I rarely eat breakfast. If I do, then it is something light such as toast with a little peanut butter. Or on the days, where my legs are really bad and I am hungry than I grab a breakfast bar.

Due to nausea I don’t often have anything for breakfast but if I do I like something light such as peanut butter on toast

Lunchtimes are often problematic, as my legs can be bad after completing chores, so I often have whatever my parents have bought or made for me from the fridge.

A kitchen can be a dangerous place when living with sudden and unexpected falls. For this, I am lucky that I am still able to live with my parents, and Mum is often in charge of the cooking. If I do any cooking, I need a perching stool and supervision.

How do I unwind for the evening?

In the evenings I usually unwind by watching my favourite TV programmes. Or if there is nothing worth watching a film that we haven’t had a chance to see yet. Failing that and when I am spending time on my own, I like to unwind by catching up with social media and reading blogs and other health articles which I schedule to share on my social media channels.

Watching TV or a film is my favourite way to unwind during the night and helping to relax before bed

I have recently begun to implement a strict routine for the nights in order to help me sleep better at night. I keep to a strict skincare regime, take my medication and read the latest book I have on the go before switching the light off.

Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?

Recently chronic pain has become a real problem for me, and as such exercising hasn’t been something, I’ve been able to do. I did use to regularly attend a gym, which had toning chairs and beds, and a recumbent bike which I loved to use. Unfortunately, it has since closed. But I am soon hoping to start using a pilates machine with a rebounder that we have in the house to improve my fitness and stamina.

Things that help me de-stress in my every day life:

To de-stress in my everyday life, I like to read, listen to music, especially uplifting, happy songs, and to create such playlists can be a joyful past time in itself. I also enjoy puzzles, especially code words, and have a book of them on my bedside table. They are a great distraction from the crippling pain that invades my body.

People I see most often and my favourite activities to do with them:

The people I see most often are my parents with whom I live, and my carer who is employed to take me out twice a week. With limited mobility, I love to visit coffee shops and enjoy time away from the house. On bad days, I do so with a book to distract me from the crippling pain. Or visiting garden centres and enjoying being surrounded by nature and beautiful flowers.

It is also lovely just to be able to chill out at home, doing what we love to do on our own. Or, spending time together watching TV shows that we all enjoy, or a film that we all can agree on.

If you got ‘normal people sick’, how much impact does that have on top of things?

I am lucky that I do not suffer from ‘normal people’ sickness that often, and I find it as more of a hindrance than anything. It causes extra fatigue on the fatigue that already exists, which make any functioning at all very difficult. It also takes me longer to recover from being sick than it would normally.

If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…

If miraculously I could leap out of bed pain-free for one day, I would take advantage to see how it would feel to live a ‘normal’ life. A packed and productive day of activities to sample what life would be like if not limited by pain and illness.

Having a pain free day would certainly be cause for celebration and jumping for joy! How would you spend such a day?

I would also love to go window shopping in one of my favourite places without the worry of legs giving out or a pain flare. And then to end this miracle of a day, a celebratory dinner at a favoured restaurant. Eating out is something that I love, but due to the restraints of chronic illness, isn’t something I can always do.

Is there anything else you’d like to share about daily living with chronic illness/disability?

Many people assume that every day is the same when living with pain and illness. That our abilities and limitations are stable, remaining the same day in and day out. However, pain and other symptoms that accompany chronic illness fluctuate.

Some days I may only experience one or two symptoms of FND. On other days I may complete the whole set. Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day. It’s an unpredictable and uncertain life.

Life with FND or any chronic illness is like having a box of chocolates every single day; you are never going to know what you are going to get!
"Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day." Share on X
A Day In The Life With FND
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Uncertainty of Living With Chronic Illness

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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 have used the prompts to look at the uncertainty and unpredictability of living with chronic illness.

The Repetition of Illness and Its Symptoms

We all, to some extent, live with uncertainty. None of us know what the future holds, and it can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling.

"It can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling." Share on X

We may not know when symptoms are going to return, but the only thing that we can be sure about is that they will return.

Living with uncertainty feels like being trapped in an endless cycle of pain and fatigue and other troublesome symptoms. There are some periods of respite in between, although they never seem long enough. And just as we are enjoying this quiet moment of pause, the symptoms repeating. There is a constant repetition of symptoms.

Living with a great deal of uncertainty is very much like driving on a road with no road map and with no idea of the direction we are headed. And also with no idea where we will end up!

Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules. For instance, when living with pain and illness, we need to learn how to pace so as not to exacerbate or trigger the symptoms that accompany such conditions. But sometimes the limits that have worked to help stave off pain or fatigue no longer work, and left wondering what now?

"Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules." Share on X

The Wondering Questions of Uncertainty and Unpredictability

A new diagnosis leaves several questions in its wake. We are left wondering how to interpret these symptoms. And wondering what these symptoms may be trying to reveal. In the wake of a diagnosis, you wonder about all the possible treatments available and whether they will be effective. We begin questioning the reactions and opinions of others when learning of our sudden new reality. Most of all, however, we wonder about our long-term prognosis and how the condition will affect our long-term plans.

"We are left wondering how to interpret these symptoms and what they may be trying to reveal…The uncertainty and unpredictability of pain leave us wondering and pondering many questions." Share on X

When pain returns or suddenly arrives, we are once again wondering and attempting to identify from where it appeared. Have I sat or slept in an awkward position? Could I have done something to prevent it? Who knows. The uncertainty and unpredictability of pain leave us wondering and pondering many questions.

There are a lot of questions that are left us to wonder when diagnosed with a long-term health condition. A lot of questions that often have uncertain answers

All in all, being diagnosed with a chronic illness is enough for turning life entirely on its head. After such a pronouncement, there is a before and after. There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak.

"There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak." Share on X

Pain and Illness Requires Turning Into Uncertain Roads

This new world of chronic illness and learning to live with symptoms is one filled with uncertainty. Every day requires turning into unknown roads uncertain of what we will find there. After waking up in bed, after a restless night starts with a body scan. A way of determining what hurts and wondering what today will bring in terms of symptoms.

We cannot even relax for a minute, however, as often what we think will be a low pain day or one with minimal symptoms doesn’t last, hope extinguished as they suddenly make their presence known.  Just when we thought we had reached a turning point in regards to our health, something else affirming its unpredictability.  Reiterating the uncertainty of life, controlled by illness and its accompanying symptoms.  

Getting Used to Living With Uncertainty

Uncertainty of living with a chronic illness is challenging to have to learn to live with during our daily life. Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will. But unfortunately, uncertainty is something that we have to learn to live with every day.

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"Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will." Share on X

Getting used to uncertainty, there is a need to learn to use humour when symptoms disrupt our plans for the day. Or to use it to deflect from the often embarrassing consequences that some symptoms can have. For instance, learning to laugh when legs suddenly give way often causing very public falls. It’s also essential to learn to forgive ourselves when such events occur, as often we are unable to control the pain or fatigue that our bodies create.

Desiring Certainty and The “Can” In Life Ahead

Yes, I often desire a more certain and better quality of life. Desiring the destruction of the giant question mark that illness has placed in the road ahead of me. Desiring the ability to make concrete and certain plans, without the constant worry whether my health or symptoms will ruin them, forcing my hand to cancel or postpone them.

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I want to embrace the times that I “can” instead of those times that I “can’t.” To become a person that battles a chronic illness rather than someone who suffers from it.

I want to desire and feel the excitement of times that I “can” instead of the bitter disappointment for the times that I “can’t”. To take control and become a person who battles a neurological disorder rather than someone who suffers from such a condition.

"I want to desire and feel the excitement of times that I "can" instead of the bitter disappointment for the times that I "can't". To become a person who battles a neurological disorder rather than someone who suffers from one." Share on X
Uncertainty of Living With Chronic Illness
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