FND Archives – Page 7 of 16

In Chronic Illness

A Christmas Wish-List of A Chronically Ill Girl

December 13, 2019 9 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. In keeping with the festive season, December’s post will be about what I would like for Christmas as someone living with a chronic illness.

Ah, the festive season is finally among us. I am sure everyone is busy getting everything ready before the arrival of Christmas Day. The shops are bustling as we search for that perfect present that exquisitely reflects those crucial people in our lives.

Also, it is the time of year when we note everything that we would like to receive from those closest to us. Those material items that we most sought after, in the hopes that they will somehow improve our lives. But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions.

"But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions." Share on X

The truth is, that if we could swap all those Christmas presents that are wrapped under the tree in exchange for everything that chronic illness has taken away, then we would do so in a heartbeat. The most welcome presents being those which cannot be wrapped and placed under the Christmas tree.

Christmas baubles on Christmas tree with presents underneath — Often when living with a chronic illness, what we most want in the world cannot be wrapped and placed underneath a Christmas tree. Photo by **Oleg Magni** from **Pexels**

If such a person, like Father Christmas, actually existed then surely the most considerable request on our wish-list would be the restoration of our health and everything else it has taken with it.

"The truth is, that if we could swap all those presents wrapped under the Christmas tree for everything that chronic illness has taken away, then we would do so in a heartbeat." Share on X

Living with the neurological disorder, FND has taken so much away from me. If such wishes were granted these are what I would wish for Christmas:

For Christmas, I Would Like Confidence

A loss of self-confidence is one of many hallmarks of living with a chronic illness. The persistent and debilitating symptoms are beginning to erode our already fragile confidence.

So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies. And as a result, we begin to establish a comfort zone, very often our homes – a place where we feel safe and secure despite the extremely debilitating symptoms.

A loss of self-confidence is one of many hallmarks of living with a chronic illness. And in its place is fear and anxiety, especially everything that is outside of our comfort zone.

Going beyond our established comfort zone, therefore, evokes fear and anxiety. And there is nothing more that evokes fear and anxiety than travelling.

"So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies." Share on X

Although travelling induces excitement for many, for those of us living with chronic illness, it can have the opposite effect. For nothing, makes us go out of our comfort zones quite like travelling.

Being away from the familiar and the coping strategies that help us get through the difficult days can be scary. When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry.

"When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry." Share on X

Travelling hasn’t been on the cards this year, but a trip away is forthcoming for next October. At the time of booking, there was excitement and anticipation. But as I have been experiencing worsening symptoms as of late, my confidence has plummeted. As a result, the thought of travelling and being away from my comfort zone fills me with dread and anxiety.

So, if it were so possible, I would wish for confidence for Christmas. Confidence and self-belief to help with travelling alongside the symptoms and consequences FND bestow upon me.

All I Want For Christmas Is Meaningful and Lasting Friendships

For me, the best part of Christmas is spending time with loved ones. And even better is the time spent visiting, spending time with and bonding with members of the family whom we may not get to see during the rest of the year.

black and white photo of woman staring out of a window — Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

It means so much to me as someone living with a chronic illness, loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

"Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone." Share on X

One Christmas wish, therefore, would be to find deep and meaningful friendships with people I can be myself with, without judgement. To spend time with like-minded people, and bonding over shared interests.

All I Want For Christmas Is Warmth!

This morning as the cold and rain hit me as I stepped outside, oh how I wished for warmth.

Woman wearing white long-sleeved jumper holding hands out towards fire — Oh, how the cold and wet weather makes me wish for warmth, especially as it can often exacerbate already debilitating symptoms.

The Winter months, with its searing cold temperatures and lashings of heavy rain, can be difficult for this living with chronic illness and chronic pain. Why? Because such conditions increase the severity of many symptoms associated with chronic illness, and especially that of chronic pain.

And now as the freezing temperatures and icy cold rain has seeped right into my bones, I long and wish for warmth!

All I Want Is To Be Able to Cope

Recently has been a tumultuous time in regards to my health and life alongside FND. Everything has and feels like a struggle. Life lately has felt like it has been about merely surviving instead of living. But I don’t want my life to be like this. I want to live and to thrive.

Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave. For often, the coping strategies that once worked, for some unknown reason no longer do and my already weak legs are scrambling underneath the deep water in a bid to keep me afloat.

"Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave." Share on X

To help keep me afloat instead of sinking below into the depths of despair and continued suffering. My wish for Christmas would, therefore, be appropriate coping strategies, those that work and will help to live and not just survive.

And Most of All I Want Is an Ending

Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives. The eradication of every symptom that accompanies it, having a profound effect on every facet of our lives.

"Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives." Share on X

Unfortunately, however, life isn’t a Disney movie, and life rarely offers a happily ever after. There are no fairy godmothers or those with magical powers that can grant us this one wish.

I suppose, therefore, it is up to us, to find ways to live our lives in harmony with chronic illness. To discover effective coping strategies for ourselves and that help us to live and endure everything that pain and illness throw at us every day. And especially it is up to us to write our own story and to make our own ending.

In Chronic Illness

What You Don't See About Living with FND

November 30, 2019 8 Comments

Living with a chronic invisible illness is both a blessing and a curse. I live with a condition called FND, which remains hidden. One of the evils of such a condition is everything which you don’t see about living with the everyday hidden struggles.

The Blessing of Living With An Invisible Illness

The blessing of such conditions lies in the notion that the illness, and it’s resulting limitations do not precede us. And allows us to choose with whom to confide in, and when and how. Illness and it’s resulting limitations remaining a well-kept secret. A secret that does not define us or how others perceive us; and not limited by popular stereotypes or sweeping generalisations.

When chronic illness remains invisible, people do not hold lower expectations of us, that many whose conditions are visible endure. It can be a blessing that even when feeling awful, others often don’t notice. Makeup can help hide the tired bags under the eyes and conceal the other visible effects of chronic illness. A fake smile can be painted to trick those who don’t know us well or the struggles we are forced to endure always.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

The invisibility of chronic illness allows us the opportunity to blend into the ranks of ‘normality.’ Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well.

"Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well." Share on X

But It’s Merely An Act: A Performance To Fool

But it is just that – an act. A performance that we regularly execute to make everyone else believe everything is fine. In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness and its accompanying symptoms supersede everything else, and this performance becomes difficult to sustain. And the magical cloak slips revealing the struggles that were once exquisitely hidden.

"In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness supersede everything else, and this performance becomes difficult to sustain." Share on X

One of the most frustrating curses of living with an invisible chronic illness is just that – concealed to the outside world. When we do share our experiences of the suffering and pain, it is often downplayed, or dismissed by those listening. Others glance at our young, healthy-appearing bodies and the mask that we have had years perfecting, and exclaim “But you look so good!” And it is frustrating when others continuously think that we cope with living with a chronic illness so well, not realising how heavy the demands of it all is every day.

Physically we are seen by those in the outside world, but what you don't see is the struggles faced by those, like me, who are living with an invisible illness — Physically we are seen by those in the outside world, but what you don’t see is the struggles faced by those, like me, who are living with an invisible illness

It sounds much like a compliment. But for those of us living with a chronic illness, it is a statement of disbelief and scepticism. But what the outside world sees; what we choose to let others see is a carefully constructed mask. A mask that allows us to traverse amongst the able-bodied world that exists outside. And to pass as ‘normal’ and healthy and having to avoid defending my diagnosis to prospective sceptics.

A curse of living with such an illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day. The inability for others to bear witness to all of the ways FND affects every facet of my life. It’s the invisible battles as well as others unable to see or understand the effect they have only adds to the loneliness that already permeates my already microscopic world.

"A curse of living with an invisible illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day." Share on X

What You Don’t See (Or Don’t Choose to See)

What you don’t see is that I am faking being well; faking health to preserve my dignity, energy and ability to accomplish whatever it is I’m doing before my legs fail me and I collapse.

You don't see that we are often faking at being well. Adopting a mask to wear when out in the wider world to fool people into believing we are like one of them. You also don't see the struggle it takes in keeping this mask on at all times. — You don’t see that we are often faking at being well. Adopting a mask to wear when out in the world to fool people into believing we are like one of them. You also don’t see the struggle it takes in keeping this mask on at all times. Photo by **Mash Babkova** from **Pexels**

You don’t know the effort it takes to fake at being well. And although faking is difficult, it is often easier than exposing the pain that exists, and then having to use precious and already limited energy to defend my permanent state of being unwell.

What you don’t see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain. The pain that I attempt to overlook when among society.

"What you don't see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain." Share on X

You Don’t See the Fear and Anxiety That Endures Because of FND

What you don’t see is the overwhelming fear that encroaches over every aspect of my life. The anxiety that this condition will continue to worsen. The concern that the list of limitations that already exist will continue to get longer; and the number of losses increasing exponentially. The underlying fear that illness will become the sole existence of my life. And the fear that I will end up being all alone in this world.

What you don’t see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone. You don’t see the self-doubt that always exists; continually doubting what I am capable of and overanalysing and questioning every decision made. I often begin to overestimate the limitations that now prevails due to FND, regularly convincing myself that I cannot do something or handle going somewhere because of the disabling symptoms that exist because of it.

"What you don't see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone." Share on X

You Don’t See The Enduring Impact of FND

You don’t see the excruciating pain that greets me in the morning as I wake after a restless night of painsomnia. Or the number of times it takes for me to even get out of bed in the morning. You don’t see as the weakness in my legs prevails, refusing to cooperate or bear my body weight. You don’t observe the nights my body contorts from unrelenting and disabling pain that radiates throughout my legs. Pain that often keeps me awake hours into the fledgeling mornings.

You don't see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia — You don’t see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia

You don’t see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body. Or the days spent crying or feeling anger at all the things I can longer do and everything I have lost as an individual.

"You don't see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body." Share on X

What you don’t see is the constant dizziness and vertigo that consumes my entire life. Nor can you see the visual disturbances that make it incredibly difficult to be able to focus on, or trust anything that I see in my field of vision.

What you don’t see is the incredible loneliness that I feel because of this condition. The friends that I have lost along my journey of trying to fit into a world that I seemingly do not belong. You do not bear witness of the challenge in making new friends or the difficulties in maintaining friendships because I am primarily housebound.

You don’t witness the anguish and frustration of after gaining a much-worked for a degree; I am not able to work due to the disabling symptoms that accompany FND. It hurts knowing that when you look at me, you wish that you didn’t have to work either. Or the thought that you may think that I am exaggerating and only playing hooky.

You Don’t See the Struggles and Impact of The Symptoms of FND Can Have

You do not witness the unimaginable struggle of walking or standing in a queue while my legs are severely trembling. The trembling so relentless that it is the only thing my mind can focus on and nothing else. You do not see the unimaginable anxiety that courses through my mind that my legs will suddenly give way, leaving me collapsed in a heap on the floor. You cannot see the images that flood my head of the many times it has happened before. And you cannot know the fear it creates about going out at all, or how it easy it becomes to prevent certain places or situations to avoid it from happening again.

You don’t see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop.

"You don't see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop." Share on X

You don’t see the pill I am forced to count out each week, or the side effects I have to plan my life around. Nor can you see the ongoing pain. Or depression. The endeavour to remain resilient in the face of all of the struggles.

The Lessons Learnt When Battling An Invisible Fight

These are only some of the struggles faced by someone living with an invisible condition such as FND. Trust me; there are so many more. And as I continue to battle and wrestle with the enduring effects of this current flare, I begin to feel more of the frustrations because of it’s lack of visibility and the lack of understanding of the impact they have on my life.

Fighting a battle that is not recognised by anyone other than myself has taught me an invaluable lesson. It has taught me that no matter how someone looks or acts, you never know what’s happening in their lives.

So be kind, for everyone you meet is fighting a battle you know nothing about, or even understand.

But perhaps it is also an important lesson to open up more and articulate to others about my experiences and struggles of living with an invisible illness. To help people, and especially those closest to me the toll it can take on every area of my life.

Perhaps such battles remain invisible because we are often too reluctant to voice them.

In Chronic Illness

The Before and Afters Of Chronic Illness

November 13, 2019 6 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 November I am using the prompts to discuss the before and afters of life with a chronic illness.

Life is messy. It comes with many responsibilities and obligations, and as we become older, these only increase. One such responsibility and one that often is accompanied by stress and worry involve financial responsibilities that characterise adult life.

Becoming an adult, although exciting; the thrilling prospect of freedom also coincides with the realisation of the financial burden of everyday life. The daily life of being an adult. The sudden understanding of everything that needs paying for when a responsible adult.

The Debt Incurred By Fun and Spontaneity

When becoming an adult with a chronic illness, there is an added financial burden — a sudden and new responsibility for paying for all the paraphernalia that accompanies life with a long-term condition. When living with a chronic illness, medications need paying as well as aids to make life easier when symptoms become out of control, and so on.

But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken. Often there is an apparent reason for the sudden flare in symptoms or a decline in energy levels. Sometimes, there is no apparent reason at all, and are left speculating the reason for the unexpected presence of symptoms.

"But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken." Share on X

When living with a chronic illness there is a hefty payback for every expansion of effort and energy. Often such a payback comes in the form of a severe and debilitating flare in symptoms.

There is now no room to be spontaneous and reckless with our time. Doing so doing can provoke and anger the symptoms that are always present. As much as we take delight in going out, there is, unfortunately, a payback of the effort and energy that the given fun had required.

Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back. The payback of every moment of fun and spontaneity is a debilitating increase in the symptoms that accompany such conditions.

"Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back." Share on X

Plunging Into The Unknown Possibilities of The Future

We often like plunging into the unknown possibilities that the future offers. We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread. Those events and fun outings that we would once look forward to now induces fear due to the uncertainty that surrounds life with a chronic condition.

"We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread." Share on X

We are unable to pencil in the dates when it would be most convenient for symptoms to appear; they do so with no concern or care for the plans made in advance. Instead, arrangements are made with no knowledge of how we are going to feel on the day in question. Or the state our bodies are going to be in on the day in question. Plans that should induce joy and excitement now only prompts thoughts of ‘what if.’

It can be exciting to plunge into the unknown possibilities that the future holds, but when living with chronic illness, however, it can trigger feelings of anxiety and fear due to the uncertainty that defines living with a chronic condition.

We look ahead, and instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering.

"Instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering." Share on X

“No, you may not go to the ball!”

Ah, remember the blissful and carefree days before the existence of illness and its numerous symptoms? The many invitations that we’d receive to ask for our attendance to social gatherings hosted by friends or family. The opportunity to escape the monotony of a night at home; the promise that we will go to the ball.

Now, the future and the continued presence of chronic illness, the doors to such balls are firmly closed to us. Usually, we begin to be overlooked, no longer invited to parties because illness has forced us to cancel on numerous occasions in the past. Or, sometimes people believe that we will not be physically well to attend. Our fairy godmother no longer in existence, and no longer able to go to such festivities.

When living with a chronic illness we, unfortunately, don’t have a godmother to allow us to go to the ball!

Invitations that now arrive in this new present and continued future take the form of letters for doctors and hospital appointments. Those living with a chronic illness will know the difficulties of going out when plagued with disabling symptoms. At times, it can become so bad that the only time we do go out is to such appointments.

"The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out." Share on X

The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out.

Organising Life Around The Changes That Illness Brings

The past, once full of spontaneity and life led on impulse becomes no more with the arrival of a chronic illness. The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations caused by this permanent new companion.

"The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations of chronic illness." Share on X

Life now and in the future, are unable to cope with days crammed full of activity due to such limitations chronic illness inevitably brings. So we must reevaluate what is most important to us, and what we can do to organise our days into something manageable.

calendar of appointments - life with a chronic illness! — A life with a chronic illness needs careful organising – calendar often full of doctor and hospital appointments

To create a ‘new normal’ out of the broken and destructive pieces of our old lives.

Our calendars once crammed full with future parties, and all the invitations that asked for our attendance now erased. In its place, a carefully organised calendar detailing the many doctor and hospital appointments that accompany this new chronic life.

None of Us Knows What The Future Holds

Oh, the future which in the past seemed so bright and exciting. The endless possibilities that it once promised now seemingly lost forever. Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it.

"Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it." Share on X

Still, there are a million questions and uncertainties that the future holds out in its hands. Even living with the certainty of illness, there are still endless possibilities to explore if only we find the courage to do so.

Yes, the possibilities might be sparse and limited due to the many limitations that lie in the wake of illness, but they do exist. And for that provides a glimmer of hope and promise.

The Before and Afters of Life With Chronic Illness

Life is often a series of before and afters especially when we experience something significant. When diagnosed with a chronic illness life becomes defined by the before and afters of life with chronic illness.

When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness. It is up to us to make the most of the unchangeable situation.

"When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness." Share on X

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.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

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.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

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.