spoonie Archives – Page 10 of 28

In Chronic Illness

Finding Healing and Recovery Amidst Illness

November 5, 2019 2 Comments

When we are unwell, healing and recovery desperately become the destination we wish to reach. The words become a beacon of hope; signalling the finish line at the end of a long and arduous race, the finish line indicating the end of the struggle of illness, the aspiration for lives to continue after being on pause. And for life to return to normal.

If a finish line were to represent the end of illness; a return to normal and resumed health then it is one that many of us living with a chronic illness will never reach. Often it can feel that we are forever stuck at the very start of the track!

But when living with a chronic illness, however, there is no finish line. There is no end to sickness and with it, suffering. Life can never, and will never return to normal. Normal now consisting of pain, fatigue and everything else that living with a chronic illness entails.

"But when living with a chronic illness, however, there is no finish line. There is no end to sickness and with it, suffering. Life can never, and will never return to normal." Share on X

As such, words like healing and recovery are not ones that I can relate to; how can these words apply to life with a chronic illness which by definition has no cure?

Healing and Recovery Is Not Always Black and White

When we think of healing and recovery in regards to health, it often seems black and white. When such ailments continue, never to go away, healing and restoration, therefore, can never be. If healing and recovery were at the finish line of a marathon, it sadly is one that many of us may never reach.

"When such ailments continue, never to go away, healing and restoration, therefore, can never be. If healing and recovery were at the finish line of a marathon, it sadly is one that many of us may never reach." Share on X

In a thought-provoking article on Psychology Today, Lissa Rankin, M.D. discusses the differences between healing and curing. In the article, Rankin describes curing as “eliminating all evidence of disease” and healing as “becoming whole.”

Healing and recovery should be about much more than eliminating symptoms. Instead, it should be a continuing process of building a stronger foundation for ourselves.

"Healing and recovery should be about much more than eliminating symptoms. Instead, it should be a continuing process of building a stronger foundation for ourselves." Share on X

Focusing on The Losses

Yes, it can be demoralising when the losses acquired start to increase steadily. When chronic illness starts to chip away at everything that defines us, we are left wondering ‘what now?’

It is easy to focus on what illness has taken away; concentrating on the sad reality that regaining health and reclaiming our past normal life may not be possible.

We fail to recognise even the smallest physical or mental improvements. The ability to walk further than the week before. Taking up a favourite hobby or past time again, or doing something you couldn’t do before can be considered as improvements.

If these are improvements, could they not also be considered an endorsement for healing and recovery? Perhaps the conventional definitions of such terms are too limiting, particularly for those living with long-term health conditions. They suggest an all-or-nothing deal, and as such one that those living with chronic conditions cannot have.

Perhaps traditional definitions of healing and recovery are too limiting especially for those living with chronic illness.

But if we begin to define recovery and healing for ourselves. For healing and restoration to mean anything, we want it to be. A definition that is meaningful to us, and our circumstance, healing and recovery can mean something beyond “being better.”

The Long Road of Healing and Recovery

However, recovery and healing are not always straightforward, especially when it involves chronic illness. Healing and recovery are a process – one full of discoveries and setbacks and wrong turns.

"Recovery and healing are not always straightforward, especially when it involves chronic illness. Healing and recovery are a process – one full of discoveries and setbacks and wrong turns." Share on X

Healing and recovery consist of many ups and downs; the process of setbacks and personal victories repeated multiple times. There may be weeks of experiencing minimal symptoms and relatively good health. Only then to be followed by a severe and debilitating flare. An increase in symptoms so relentless that even the smallest activity induces significant fatigue. The improvements seen during the brief periods of wellness, snatched away as illness claims us once again. The signs of healing and recovery vanished within a blink of an eye.

The bad days don’t suddenly go away. But neither do we start back at square one after setbacks and deteriorations. The lessons gained during previous flares allows us to modify our life accordingly. And these modifications can help decrease the severity of symptoms, and help lessen the recovery time from debilitating flares.

Finding An Equilibrium Between Illness and Wellness

Living with a chronic illness is living with the knowledge that our health will fluctuate every day for the rest of our lives, continually trying to find an equilibrium between illness and feeling well.

Living with a chronic illness involves continually trying to find an equilibrium between illness and feeling well. Trying to balance the effects of chronic illness with our responsibilities in our everyday lives. Photo by **Sebastian Voortman** from **Pexels**

The bad days they are accompanied by challenging symptoms and faced with seemingly impossible challenges. The days where the balance of power tipped in favour of illness can seem like a quest, demanding extraordinary willpower and resilience to complete the simplest of tasks and to achieve your goals.

It is on these days; the days when the struggle to reach healing and recovery seems like an impossibility, that it is easier to give up and succumb to illness and its accompanying symptoms and drama. To give up trying to change something which cannot be changed.

Embracing the Unknowns of Life With Chronic Illness

But perhaps a part of healing and recovery involves accepting the reality of the long-term presence of chronic illness. And instead of trying to change the unchangeable, healing and recovery is making the best of the given situation and exploring what it means to live well with this new reality.

"Instead of trying to change the unchangeable, healing and recovery is making the best of the given situation and exploring what it means to live well with this new reality." Share on X

Healing is accepting the many unknowns of chronic illness and embracing it as a part of everyday life. Recovery consisting of small, incremental steps toward better and improved health. And not fixating on the struggle and disappointment of not living up to our often unrealistic expectations. Or stressing about tomorrows or the ‘what-ifs’ of today.

Perhaps healing and recovery come from accepting the reality and presence of chronic illness and embracing the unknowns as a part of everyday life. Photo by **Daniel Reche** from **Pexels**

"Healing is accepting the many unknowns of chronic illness and embracing it as a part of everyday life. Recovery consisting of small, incremental steps toward better and improved health." Share on X

Finding Healing and Recovery In Everyday Life With Chronic Illness

One of the most frustrating aspects of living with a chronic illness and one which I am currently experiencing is symptoms suddenly making doing something or going somewhere, extremely challenging, where once it came so naturally. It can often seem like the symptoms of illness, enjoys putting a stumbling block in our way to make even the easiest of tasks downright challenging.

I find healing and recovery, however in the small and incremental steps toward being able to do that something or go to that particular place less daunting and not as much of a challenge as the symptoms make it out to be. I find healing and accomplishment when I can do that something or go somewhere that before felt impossible. There is a knowledge, however, that another flare may once again make these accomplishments, challenges once more. Still, after overcoming it once, they don’t seem quite as daunting or impossible as during that first encounter.

"I find healing and recovery, however in the small and incremental steps toward being able to do that something or go to that particular place less daunting and not as much of a challenge as the symptoms make it out to be." Share on X

Healing is letting go of the guilt of not being able to this or that. Healing comes from no longer searching for the ‘why’ this has happened, but accepting that it is. And allowing ourselves the need for rest and recuperation is also a sign of healing and recovery.

Healing can be letting go of guilt and allowing ourselves the chance to pause and rest, especially when symptoms are at their worst.

It is accepting of spending a little time doing chores and stopping to rest. Letting go of the idea that we should be doing more, and not pushing ourselves harder to see what we can handle is signs of healing and recovery.

Final Thoughts

I still have a chronic illness. I still suffer the effects of living with FND. It again flares, and making life difficult and challenging. It’s not healed in terms of the conventional definition, but I am still on a lifelong healing and recovery journey. One that will continue to ebb and flow, much like the symptoms that accompany it.

"I'm not healed in terms of the conventional definition, but I am still on a lifelong healing and recovery journey. One that will continue to ebb and flow, much like the symptoms that accompany it." Share on X

FND does and will continue to present limitations and stumbling blocks. Still, I can continue to find healing and recovery by overcoming such challenges and making changes to the way I live my life that will continue living with such limitations easier.

Finding Healing and Recovery Amidst Illness

In Chronic Illness

10 Things I’m Afraid Of Due to FND

October 20, 2019 2 Comments

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. 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

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.

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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.

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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.

In Chronic Illness

What They Don’t Tell You About Life With Illness

October 12, 2019 12 Comments

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." 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.

In Chronic Illness

A Chronic Life: The Grief of FOMO & FOGO

September 26, 2019 3 Comments

The Rise of FOMO Due To The Social Media Crazed World

In this social media crazed world we live in has borne FOMO, the “fear of missing out.”

An anxiety-inducing feeling of being left out of something everybody else is doing, or knows about, or owns. It’s the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. And a want to do everything at once to feel included.

"FOMO is the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. A want to do everything to feel included." Share on X

And the feeling of FOMO is intensified as we bear witness of friends, family and acquaintances having a brilliant time via social media.

The Fear of Missing Out Becomes A Way of Life When Living With Chronic Illness

Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life.

There isn’t anybody that would wish to miss out on experiencing the joy of being part of celebrations in the lives of friends or family. Nobody wants to feel left out or feeling they are experiencing life behind a screen. We want to be experiencing life, instead of merely being a bystander to everything it has to offer.

"Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life." Share on X

But when living with a chronic illness, and the unpredictability that it brings, missing out becomes another new reality. The existence of FOMO and its presence in this new life is something else we must grieve and learn to accept.

Social Media although connects us with others all over the world, can cause FOMO as we see evidence of the fun that everyone else is seemingly having in our absence. — Social Media connects us with others all over the world, but can often make us realise that our world has become so much smaller because of chronic illness

Staying in the confines of our home becomes a necessity, not a choice. There is no real choice as debilitating, and relenting symptoms continue to ravage the body. Symptoms so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds.

"Symptoms often become so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds." Share on X

But perhaps FOMO is inadequate to describe the depths of feelings it provokes in those living with chronic illness. It’s not fear, but feelings of sadness, angst, regret and anger at chronic illness for it taking so many things from you, lost forever.

The Guilt of FOMO

If the sadness and disappointment that FOMO creates aren’t enough to contend with, unfortunately, it is also accompanied by guilt. The guilt for bot being able to make it to a friend’s birthday celebration, or a wedding. Guilt, for not only not attending, but also knowing the disappointment felt by those whose celebrations we are missing.

As we sit at home, missing out, we torture ourselves, thinking that if only we pushed ourselves a little more, we could have gone. The reality is, however, is if we had pushed ourselves, it would only result in exacerbating symptoms, making the situation worse. The truth is, we are forced to miss out on things because we are not well.

"Pushing ourselves to attend events although will oust the guilt of not going, often results in exacerbating symptoms and make us feel even worse. The truth is, we are forced to miss out on things because we are not well." Share on X

FOMO shines a mirror on our old life, the normal that used to be our reality. And it reminds us that chronic illness and our fragile bodies have decimated normal, emphasising this new reality and our new life of missing out.

Chronic Illness Inconveniences, and Not Only For The Person Living With It

As this new reality continues, symptoms persisting and enduring further FOMO, a new consequence of always cancelling and missing out becomes evident.

If unable to attend events and celebrations, and forced to cancel at the last minute again and again, then consequently people will stop inviting you to stuff.

Chronic illness and everything that it brings and takes away is an inconvenience and not just for the person living it. And so, whether to make it easier for them or us, invitations are no longer given. It hurts being seemingly cut out of the lives of those we care about, with no regard to our feelings.

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From FOMO To FOGO

Ironically, another consequence of FOMO is the development of FOGO. What is FOGO, I hear you ask? It’s the Fear of Going Out. After cancelling and not being able to make events, a fear of making plans and going out evolves. Furthermore, after spending so much time indoors, in the comfort and safety of home, it can be anxiety-provoking when venturing outside again.

There is an anticipation that a flare-up of symptoms will result in the cancellation of plans of going out. The mere thought of going out starts to become unobtainable. And in the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it’s even become a reality.

"In the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it's even become a reality." Share on X

The fear of going out, however, does not equate to me not going out when symptoms allow me. The reality of living with a chronic illness often leads to overanalysing and questioning every decision made. A worry exists that the very act of going out will lead or exacerbate symptoms.

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Feeling Unsafe; a Prisoner In An Unpredictable Body

FOGO develops as a result of a loss of self-confidence. The neurological condition I live with recently has recently caused weakness, debilitating trembling in the legs, and falls. In recent weeks, I have regularly been finding myself on the floor, as legs give way with no warning. Such symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body’s ability to keep me safe and free from harm.

"Debilitating and unrelenting symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body's ability to keep me safe and free from harm." Share on X

Continually living with severely trembling legs, acutely aware of the unpredictability of such symptoms. Recognising that at any moment they could suddenly stop working and collapse causes anxiety, especially when it involves leaving home and the safety of our comfort zone.

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Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring. The awareness of that it could happen when we next go out, unable to stop it, it can often be easier not to go out at all.

"Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring." Share on X

Chronic Illness Creates Fear and a Fear of Going Out

Living with a neurological condition and such unpredictable symptoms create fear of the unknown as well as what could happen. A knowledge exists that the ‘what could happen’ is very likely to happen again, but not when can frighten.

All the accompanying symptoms of FND make me fear my own body, waiting with bated breath for the next fall or accident. We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape – no relaxing holidays from the debilitating symptoms that suddenly pop-up every day. Sometimes there’s even no cures for them, or little in the way of effective treatments. And we become scared; scared of getting worse and becoming sicker and frailer. We don’t feel safe.

It creates fear and a fear of going out.

"We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape. It creates fear and a fear of going out." Share on X

A Chronic Life: The Grief of FOMO & FOGO

When chronic illness creates the 'fear of missing out' and the 'fear of going out'

In Chronic Illness

A Chronic Illness Edition of Snakes & Ladders

September 8, 2019 2 Comments

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.

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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