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In Lockdown: A Returning to Normal For Some
In Chronic Illness

In Lockdown: A Returning to Normal For Some

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties, whereby bloggers and writers share their stories through given prompts.  It would be remiss of me not to use this month to discuss the ongoing Coronavirus pandemic through the eyes of someone living with a chronic illness— a topic that is affecting everybody, and not just those living with long-term health conditions.

Just like with any start of a brand new year, 2020 promised hope and endless possibilities. However, little did we imagine that instead, it would bring a worldwide pandemic and irrevocably change the way we live our lives.  

Sign reading 'World: The World Is Temporarily Closed'
Who could have imagined at the start of 2020, much of the world would become closed due to a pandemic? Photo by Edwin Hooper on Unsplash

At the time of writing this blog post, much of the world is in lockdown. The UK government even extending ours by at least another three weeks. Our movements have become severely restricted.  Our lives and our worlds becoming increasingly smaller.  Who knew that life could change so dramatically in the blink of an eye?

Strange Time For Many But For The Few, It Feels Like Returning to Normal

Well, those living with chronic illness are all too familiar that life can change so dramatically, so quickly.  Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning,  It leaves behind chaos and destruction, and as such, life will never be the same. 

Those living with chronic illness are all too familiar that life can change so dramatically, so quickly. Everyone is experiencing many of the grief and feelings those with chronic illness goes through after diagnosis.
"Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning,  It leaves behind chaos and destruction, and as such, life will never be the same." Share on X

Currently, for many, these times seem strange and peculiar. But for those living with chronic illness, it often feels like a returning to normal. For us, our lives and our worlds already feel small, so small that it often feels claustrophobic.  The isolation endured by many at this moment in time is often the norm for those living with chronic illness.

"For us, our lives and our worlds already feel small, so small that it often feels claustrophobic.  The isolation being endured by many is often the norms for those of us who live with chronic illness." Share on X

The world is experiencing a loss of freedom; unable to move freely.  And a loss of the freedom to plan. Collectively we are all experiencing grief, anxiety and overwhelming uncertainty. All of which are hallmarks of what it is to live with a chronic illness.  

Window covered with bars
When living with chronic illness our homes can often feel like a prison; a place where we are confined with debilitating symptoms. During the lockdown, everyone is experiencing the feeling of being imprisoned. Photo by Denny Müller on Unsplash

Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness as persistent, debilitating symptoms often imprison us behind those same four walls. And where nights and days blur together.  Once, it was due to severe, and disabling symptoms, and now due to COVID-19. 

"Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness." Share on X

It seems that everyone is experiencing a small slice of what it is to live with our truth. 

Distancing From Thoughts of The Future

Of course, discussions have begun regarding the future, and how and when the current lockdown will end. And although all of us wish to reclaim life as we know it, and return to normality, there is also an element of anxiety, especially for those living with chronic illness. 

Our lives with chronic illness have become currently impacted in ways that are yet to be determined.

Our lives with chronic illness have become impacted in ways that are yet to be determined. The lockdown has meant the cancellation or postponement of essential medical appointments.  Those living with chronic illness now have no access to therapies that help ease the disabling symptoms or which help reduce the number of debilitating flares. So, currently, there is a real fear of an uncontrollable flare or a real setback to progress that we had previously made. 

"Our lives with chronic illness have become currently impacted in ways that are yet to be determined. There is a real fear of an uncontrollable flare or a real setback to progress that we had previously made. Share on X

Before, the lockdown, because of increased falls and deterioration in other symptoms, I lost confidence in going out. Now, with the inability to go out, and regaining that lost confidence, I fear that it will make the situation worse. I fear that my confidence will take a further hit, making going out even harder.  

The Pandemic and Subsequent Lockdown Is Stressing Everybody

Living with chronic illness, or not everybody’s lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious.

There is much uncertainty regarding the future, and how and when the lockdown will be lifted, and allowing us to return to normality. As such, many are fearful and stressed. Photo by Tonik on Unsplash.
"Living with chronic illness, or not everybody's lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious." Share on X

Although living with uncertainty isn’t new when living with chronic illness, it does not mean that the pandemic and lockdown is any more tolerable for us to manage.  We’re adding the stress of living with the Coronavirus situation along with the burden of trying to control a chronic health condition. 

Perhaps the Pandemic Will Lead to Better Understanding of The Difficulties Faced By Those Living With Chronic Illness

When diagnosed with chronic illness, there come waves of grief, sadness, anger, loss, fear, and uncertainty as we grapple with the changes that illness induces. And as the world is coming to terms with these changes, everyone is experiencing the same emotions.  We are no longer alone in our grief. 

The discomforts faced every day by those living with chronic illness, are being felt all around the world.

The discomforts faced every day by those living with chronic illness, are being felt all around the world. Ordinarily, there are no feelings of solidarity, and being ‘in this together’ as there is now.  At this moment in time, we are all attempting to navigate and cope with this reality.

"Ordinarily, there are no feelings of solidarity, and being 'in this together' as there is now.  At this moment in time, we are all attempting to navigate and cope with this reality." Share on X

We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness. So often, people comment on how nice it must be to spend so much time at home.  Now, that they too are experiencing this phenomenon, perhaps they will realise how difficult it can be. 

"We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness." Share on X

Celebrating Not Missing Out

Like when going through any difficult time, I believe it is vital to see the silver lining.  To cope, therefore, it is crucial to look for the positives in a challenging situation.  

Those who are disabled or chronically ill are enjoying the accessibility that the internet provides by allowing to watch new film releases and exclusive concerts and gigs during this lockdown. Photo by bongkarn thanyakij from Pexels.

Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. Because when living with a chronic illness, you tend to miss out a lot. Missed parties, celebrations, and lots of cancelled plans are the norm due to persistent, debilitating symptoms. But now, as the lockdown continues, we are all imposition with missing out.

"Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. As the lockdown continues, we are all imposition with missing out." Share on X

In truth, this lockdown has allowed us to engage in our interests, in ways that hadn’t previously been available. As someone affected by severe and debilitating symptoms, I am unable to attend concerts and gigs. The cinema, with its high ceilings, is somewhere else that I find it challenging to visit. A deep shame, as a person who very much enjoys films. The lockdown, however, has allowed me to watch new releases from home, as cinemas remain closed. I have also enjoyed some of my favourite artists perform from their own homes, from the comfort of mine.

For me, one of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become.  For those of us living with chronic illness and disability, we hope that it continues even after normality has resumed. 

"One of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become. We hope that it continues even after normality has resumed." Share on X

What has been your experience of the lockdown and self-isolation? Leave your thoughts below

In Lockdown: A Returning to Normal For Some
April Link-Up Party with A Chronic Voice
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Loss In The Time of Chronic Illness
In Chronic Illness

Loss In The Time of Chronic Illness

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Everyone Is Amid A Pandemic

The world has found itself amid a pandemic. Coronavirus, specifically COVID-19, has wreaked havoc on the world, and life is no longer what it once was.  Much of the world is now on lockdown, only able to go out for one of several reasons such as going shopping or exercise, for example.

It feels that everything in our lives is closed, lost to us amid this pandemic. But loss and chronic illness is all to familiar as it often creeps into every facet of our lives. Photo by Tim Mossholder from Pexels

As such, loss has become an intimate component of this new dystopian reality.  The loss of being able to go wherever you want, whenever you want. As the supermarket shelves are empty due to panic buying, there is also a loss of what we would typically eat. And a loss of normality. 

"Loss has become an intimate component of this new dystopian reality. The loss of being able to go wherever you want, whenever you want. The loss of what we would typically eat. The loss of normality." Share on X

The path that we would usually find ourselves on has now become overgrown and unrecognisable. As a result, losing our way and finding ourselves on a completely different road, no longer able to find our way or even know what direction to take next. 

The Pandemic Through The Lens of Chronic Illness

For the chronic illness community, however, it feels that life has not changed. Thanks to the chronic life, we already spend a significant amount of time stuck at home, and as a consequence, we are more isolated than we often realise.

"For the chronic illness community, however, it feels that life has not changed. We already spend a significant amount of time stuck at home, and as a consequence, we are more isolated than we often realise." Share on X

Furthermore, the feeling of loss is all too familiar. Loss often becomes another feature of life with a permanent condition, as much as the symptoms that accompany it. It becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us.

"Loss becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us." Share on X

The loss of mobility. The loss of independence. The inability for spontaneity. The loss of friendships. And the loss of control. When living with a chronic illness, the deficits can be infinite and extensive. 

The losses that can incur from living with chronic illness can be infinite and extensive as we lose mobility, independence, friendships and much more. Photo by Lucas Pezeta from Pexels.

With regards to the current pandemic, the only silver lining that we can hold onto that it will not be forever. It too will pass, and eventually, life will return to normal. And everything that was lost will be recouped.

For those like myself, living with a long-standing health condition, however, we are not as lucky. The losses that we accrue as a consequence of them, we cannot reclaim. For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike at a moment’s notice, and prepared to steal something else from our lives.

"For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike." Share on X

The Continuing Grief of Loss And Chronic Illness

When diagnosed with a chronic illness, you never expect to feel such regular periods of grief. Nor do you foresee to grieve so intensively.  And never can you imagine that the need to grieve happens with considerable frequency.  

When living with a chronic illness, unfortunately, there is no getting better or being cured. Instead, your previous self, your old body has been lost. And with it, emotions such as grief, anger, and shame accompany this new life.  Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body.

"Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body." Share on X
The many negative emotions that accompany the changes and loss that comes with chronic illness can become much a part of life with the illness as the physical symptoms.

My experience has taught me that as when new symptoms emerge or existing symptoms worsen with alarming regularity, there is a further loss. As such, the grieving process starts again.

The Losses From Living With FND

I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs – those such as crippling pain and constant and debilitating trembling. I have lost the normality of what it is to live in a healthy and fully functioning body.

"I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs. I have lost the normality of what it is to live in a healthy and fully functioning body." Share on X
With the relentless and debilitating sensations in my legs I have lost the normality of what it is to live in a normal, healthy and fully functioning body. Photo by Lucas Pezeta from Pexels.

For so long now, I have lived with such unpredictability regarding the functioning of my legs.  Of never knowing when my legs will suddenly give way.  Events that and leave me lying in a heap on the floor, unable to get back up. And so, I have lost and must grieve the inability to trust my own body.

When living with a chronic illness, any chronic condition, especially those culminating in mobility problems often results in a loss of independence, of some variety—a loss of freedom and spontaneity.  

The Loss of Freedom and Spontaneity

A loss of being able to spontaneously decide to for a walk when aimlessly sitting around the house; one with there is no final destination in mind but one to see where you will end up.  And no longer will be able to navigate long walks with steep hills, or plenty of steps to climb up and down.  Now, going out requires careful planning and consideration if symptoms suddenly surface, becoming too disabling, and prohibiting us from continuing any further.

No longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip.

"We are no longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip." Share on X
The ability to go for a spontaneous walk or even a trip is often lost forever to those living with chronic illness when it brings changes to mobility or fatigue. Photo by Noelle Otto from Pexels.

No longer can I remember the last time I felt the house on my own. I do know that it has been years. Since then, I’ve had to rely on my parents. Or my carer to drive me to the places that I wish to visit, or relying on a taxi service to take me where I’ve needed to go.  FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim.  Living with a long-term condition can make you feel that you are at the mercy of others.

"FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim." Share on X

For The Chronically Ill, This Is Our Normal

I know that I have a lot to be grateful for; I’m still here and have much going for me. But, I cannot help but imagine what life would be like if I had never gotten sick.  At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised if not so affected by the debilitating symptoms that I have now considered to be my normal. 

"I cannot help but imagine what life would be like if I had never gotten sick.  At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised." Share on X

Grief and acceptance are not linear, often coming in waves, returning again and again. When experiencing such emotions, it is natural to imagine the what-ifs, or old lives, desperate to return to it—something, which I guess a lot of people are doing as they grieve the losses incurred.

Although, in some ways the losses has not been extensive as those experienced by the chronically ill. Missed holidays and events such as concerts can be rescheduled, for example. Innovative ways to allow people to work from home, or enjoy the latest cinema from the comfort of our sofa are now available to the masses. Technological advances that would have significantly benefited the chronically ill and disabled population, but have previously deemed unnecessary or difficult to implement.

There are published articles of tips on how to stay sane and entertained during the long periods of isolation.  Or tips on how to cope with illness, if it were to happen. Things which the chronically ill and disabled have had to navigate own their own.

It Will End For Many, But Will Still Continue For Those of Us With Chronic Illness

But, this pandemic will end, and life will return to normal. But for those of us living with chronic illness, our lives will continue as the same as is now. For isolation, uncertainty and fear are our norms because this is how we live our lives regularly. And when the current social distancing measures end, there I am sure will be much celebration.  But for me, it will also generate some anxiety.    Before, the pandemic, I had lost self-confidence in going out due to the worsening in my symptoms. And so, there is some anxiety that I will have further problems regarding my confidence when returning to the outside world as I become all too familiar with staying indoors. 

"But, this pandemic will end, and life will return to normal. But for those of us living with chronic illness, our lives will continue as the same as is now. For isolation, uncertainty and fear are our norms." Share on X

I hope that after, the current pandemic ends that the abled body remembers that although they have regained what they had lost, there are many out there who will still experience loss and the grief that accompanies it for the rest of their lives.

Loss In The Time of Chronic Illness
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