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In Chronic Illness

What The World Learnt About Chronic Illness

December 29, 2020 No 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 December, I have written what the world learnt about chronic illness in 2020 because of the coronavirus pandemic.

What, a terrible year 2020 has been for us all.

A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many. Never could we have imagined that within the first few weeks of the new year, a virus would sweep across the world, resulting in a pandemic that would disrupt life as we knew it.

2020 was the year of the pandemic as coronavirus swept around the world. It was also a year in which the world learnt about living with a chronic illness – photo by **Anna Shvets** from **Pexels**.

"What a terrible year 2020 has been for us all. A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many." Share on X

As we watched the news, night after night, with horror, we witnessed the death toll rising; every statistic representing a family grieving a loved one taken by this cruel and relentless virus. But the virus did not only affect those who lost a loved one because of it, or those unlucky enough to contract it but affected us all.

A Pandemic and A Lockdown

For months we did as the government asked and stayed at home, leaving the house only if necessary. Many began working from home, and parents became teachers as schools shut its doors. Nights outs were swapped for nights in binge-watching the latest offering from our favourite streaming services. Our movements became restricted as the virus continued to spread And we were all forced to adapt to a ‘new normal.’

As the pandemic worsened lockdowns became enforced as the world was forced to close non-essential shops, hospitality establishments and so on

However, for those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness.

"For those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness." Share on X

What The World Learnt About Chronic Illness In 2020

Living With Constant Uncertainty is Exhausting and Overwhelming

When living with a chronic illness, uncertainty becomes closely tied alongside the new title tethered forevermore to your existence. One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day and making it difficult to commit to anything. The symptoms that accompany illness are also uncertain, never knowing when they will next appear; or whether they will improve or worsen over time.

"One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day." Share on X

Uncertainty is something that is deeply familiar for those living with chronic illness, but it has also been something that has been felt throughout the world as the pandemic caused a great deal of it – photo by **Josh Hild** from **Pexels**

The current COVID-19 pandemic has created a deep sense of uncertainty and fear that many have experienced because of it. Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness. These worries and the uncertainty regarding job security and finances have been exhausting and overwhelming for everyone during the pandemic. Many people have reported feelings of depression and anxiety during these events, especially with the recurring lockdowns.

"Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness." Share on X

As a result, 2020 has been the year when the world realised how living with constant uncertainty is exhausting and difficult.

Constantly Being at Home Is Neither Nice Nor Exciting

As well as the extremely overused question of, “How are you?” another question often asked is “So, what do you do?” A question that many living with a chronic illness dreads as many of us have to explain why we are unable to work. Instead of encountering judgmental comments, many reply on how enjoyable and exciting it must be to spend so much time at home.

In truth, days are spent behind closed doors enduring excruciating pain and other such horrible symptoms. But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed. And as pleasurable it may sound to watch as much Netflix as time allows, it soon becomes tedious and tiresome.

As the lockdown continued for several months, and we all stayed at home, the world learns that it is not a treat or exciting being confined – photo by **Matthias Groeneveld** from **Pexels**.

"But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed." Share on X

But many people reported struggling with the confinement inside the same four walls during the lockdown. Many cried that they had enough of binge-watching entire seasons of whatever show became the latest obsession. Many wished for the pandemic’s quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous.

"Many wished for the pandemic's quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous." Share on X

A Year of Very Little Socialising and a Case of Not Going Out

For those living with chronic illness, a popular meme exists which has become popular on social media. It is one that reads ‘The Bins Go Out More Than I Do.’ During 2020, however, it became a meme that I have seen shared countless of time and nor just by the chronically ill community. For the course of the lockdowns, the reality for the majority was this very predicament.

The reality of living with a chronic illness means that cancelled plans or the feeling of not being able to do what you’d really like to becomes the norm. There exists grief of feeling as if you are missing out on your life. As well as constantly needing to grieve the time you have lost or everything you have missed out on.

"Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family." Share on X

Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family. Or the intense frustration of being unable to do what you want. All of which are too familiar for those living with chronic illness and will continue long after the pandemic has ended.

A Time of Indulging In Social Media and Telecommunication

When living with a chronic illness and experiencing intense, debilitating symptoms, it isn’t easy to visit friends and family. Long days and nights spent alone with only symptoms for company, still yearning for social contact.

Computers were used a lot during this year for keeping in touch with friends and family with frequent Zoom calls! But the world now knows it’s not a substitute for a physical hug!

Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact.

"Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact." Share on X

With months and months of only being able to keep in contact with loved ones via FaceTime or Zoom the world has now realised that social media interactions are not the same as face to face interactions. And never again will people underestimate the power of a physical hug from loved ones.

Anxiety Rearing Its Head When Cutting The Ties of Isolation

From living with a chronic illness, I know that isolation is hard going, but so is escaping it. When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, the comfortable sofa in the living room (when I can reach it) and my thoughts. There is only knowledge of how excruciating the pain has become or the intensity of other such abhorrent symptoms.

"When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, or the comfortable sofa in the living room and my thoughts." Share on X

When the flare subsides, and your body is now allowing you the chance to go out once again, the wonder of the outside world is mixed with terror. Suddenly, going outside and doing things you once did evokes anxiety and worry. It’s as if I have landed on a different planet, everything different and threatening. After being confined for so long, it can feel like you will die when leaving the safety of home. You are not, of course, and you begin to breathe slowly, reminding yourself that this is something you used to do all the time.

Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before. The anxiety we feel because of chronic illness, and theirs is not the same, however. One occurs due to a sickness that already exists, the worry of exacerbating it and becoming worse. The other exists as a result of avoiding becoming ill, the fear of coronavirus affecting so many.

"Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before." Share on X

In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again. It has been a year in which the world learnt a lot about life with chronic illness. Let’s hope they remember the lessons.

"In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again." Share on X

In Chronic Illness

5 Ways to Help Find The Light In The Darkness

November 20, 2020 3 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 November, I have looked at ways to help find the light in the darkness during depressive episodes.

Trapped Inside A Revolving Door of Misery

During recent times it has often felt that I have become trapped inside a revolving door of misery. The symptoms I live with; symptoms that are already constant have become even more severe and relentless. Unsurprisingly, this has had a knock-on effect on my mental health; becoming depressed and anxious as the present flare refuses to abate. The result of which only exacerbates the already oppressive physical symptoms, which only makes me even more depressed and anxious. All in all, it feels like a terrifying ride I cannot get off.

"It has had a knock-on effect on my mental health; becoming depressed and anxious. The result of which only exacerbates the already oppressive physical symptoms, leaving me even more depressed and anxious." Share on X

Living with a chronic illness can have a significant impact upon mental health and as such it can be difficult to find light in the darkness especially during a significant and prolonged flare.

Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. When experiencing this type of severe flare, the only thing I can control is how I react to such events. And the only aspect of my health and current flare I can take control of is my mood. It is up to me, therefore, to find ways in which to find the light in the darkness; ways in which to lift my mood and make me feel a little better despite such unrelenting physical symptoms.

"Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. The only thing I can control is how I react." Share on X

5 Ways to Help Find Light In The Darkness During Depressive Episode

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What works for one person, however, may not work for another. So often it is trial and error to see what will work for you. But below are some suggestions which may help you out of a depressed or anxious funk, and help find light in the darkness during such episodes.

Incorporating a Comfort or Joy Box In Your Life

Well, what is a comfort or joy box? Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days.

"Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days." Share on X

I know how all-encompassing those days where anxiety and depression run rampant that it can be difficult even to remember what helps you get through such difficult days. Or fatigue that is so intense prohibits you from even searching for such items. Hence, by keeping them in a box altogether, in easy reach is so useful. Even using bright, colourful decorations to adorn the box is also enough to lift your mood during the dark days.

In my box, I like to include a whole host of brilliant comedy films; The Proposal starring Sandra Bullock being amongst my favourites. It isn’t easy to find humour or joy when chronic pain is overpowering your entire life. Watching such brilliantly films, therefore, is a welcome distraction from the excruciating effects from living with chronic illness. And it’s also a welcome reminder that I can still laugh and find joy even through the difficult days!

Experimenting With Pushing Your Comfort Zone

I know that when withstanding such challenging flares, it can feel safer staying within your comfort zone. Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms.

"Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms." Share on X

And although yes, it feels safe and secure staying within these limits, it only serves, however, to worsen the depressed and anxious feelings that accompany such flares. Staying inside the self-imposed limits chips away from your self-confidence, hating yourself, even more, when unable to escape.

But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety. When successfully stepping outside your comfort zone, it increases your self-confidence as you begin to realise that you can do that thing or go to that place despite your symptoms telling you otherwise. The anxiety that arises when leaving your comfort zone also begins to lessen as you realise that you can do more than you believe.

"But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety." Share on X

Sanitising Negative Thoughts

When experiencing a prolonged severe flare, it is so tempting to attend to the negative, depressed and anxious thoughts that accompany such a time. The thoughts that scream ‘you’re worthless and useless’, or those that tell you that this current flare will never end. And thoughts that entirely concentrate on how awful you are feeling and how oppressive the symptoms have become.

"When experiencing a prolonged severe flare, it is so tempting to attend to the negative thoughts that accompany such a time. The thoughts that tell you that this current flare will never end." Share on X

Although it can be challenging to think positively when experiencing intense symptoms, sanitising negative thinking can help you become more positive and making it easier to cope with life with a chronic illness – photo by **Blu Byrd** from **Pexels**.

These thoughts, unfortunately, we are forced to hear. However, we can choose not to listen to them or give them the attention they crave. Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking.

"Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking." Share on X

Instead, we need to focus on positive thinking and reminding ourselves of affirmations such as ‘This too shall pass.’ The more that we can think more positively, the more we start to believe such thinking and start to see the light out of the darkness.

Launching A Regular and Consistent Sleep

Sleep can be a tricky endeavour when living with chronic illness and chronic pain. And especially during severe flares, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety, further making it harder to cope with the physical demands of chronic illness. I know myself, that if I do not get enough sleep the next day I am miserably exhausted, pain levels rise, mood dampens and left unable to cope.

As much as sleep can be hard to come by when living with pain and other debilitating symptoms. Not getting enough can also worsen feelings of depression and anxiety too – Photo by **Ivan Oboleninov** from **Pexels**.

"Sleep can be a tricky endeavour when living with chronic illness. During a flare, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety." Share on X

But by developing a healthy bedtime routine; one that lets your body know it’s time to sleep can really help towards a good night’s sleep. For example, going to bed around the same time, every night allows the body to adapt to a more healthy circadian rhythm. And indulging in your favourite self-care practices before bedtime is also recommended as a way of relaxing both body and mind. For me, I like to read for at least thirty minutes before switching the light off. If pain continues to be a problem, consider using a heating pad against the most painful areas.

"But by developing a healthy bedtime routine; one that lets your body know it's time to sleep can really help towards a good night's sleep." Share on X

Writing The Blues Away

Illness has taken so much in my life – my mobility, identity and self-confidence, to name a few. For me, writing has allowed me to reclaim power back from the claws of chronic illness. Articulating my experiences through journaling and blogging allows me to process the experience of being chronically ill. It also helps validate such experiences, revealing hidden vulnerabilities that even I may not have been aware of, if not for purging my emotions on paper.

"Illness has taken so much in my life. For me, writing has allowed me to reclaim power back from the claws of chronic illness." Share on X

By writing my feelings, and becoming aware of masked insecurities it also allows me to become better adept at finding ways to manage fears and anxieties that arise during difficult times. For me, writing has become an important outlet for the frustrations of living with a chronic illness. It truly is a cathartic experience.

Writing can be an extremely cathartic experience and one which allows you to connect and help others. Thereby, it is an outlet that allows you to be productive – making you feel accomplished and happier – photo by **Lisa Fotios** from **Pexels**.

A Purpose In Writing

But it is a cathartic experience that not only helps me but allows me to connect with and help others in similar situations. Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words. It is writing that has given me purpose and confidence in my abilities as my skills have improved. And I have become happier and self-confident as a result.

"Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words." Share on X

One exercise that has really helped me is by writing down everything that I am worried about before bed. By leaving my anxieties on the page, they are no longer playing on my mind and making a good night’s sleep much easier to come by.

In Chronic Illness

Chronic Illness: A Battle of Mental Health

October 28, 2020 3 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. As World Mental Health Day fell in October, I decided to use the prompts to discuss chronic illness and mental health.

Chronic Illness: Directing a Battle Concerning Our Mental Health

In my last blog post, I recited a famous quote from the Shakespeare play, As You Like It. All the world’s a stage, And all the men and women merely players.” But if I indeed am the player or actor than what role would chronic illness assume?

After much thought, I concluded that chronic illness surely would assume the position of a director. A director, the person in charge and assumes all responsibility for every facet of a film or stage production. It can feel like chronic illness plays a similar role in the lives of those forced to live with it.

When living with a chronic illness it not only has a significant impact upon your physical health, but has one on your mental health also. Image by Wokandapix from Pixabay.

For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed. It often drastically limits what we can do, and brings a whole lot of uncertainty to everyday life. And it has complete control over where and when the symptoms that accompany it will strike.

"For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed." Share on X

But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health.

"But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health." Share on X

Acquiring Not Only Physical Symptoms But Symptoms Associated with Mental Health Also

Once again overwhelmed by severe and debilitating symptoms, it feels that FND is once again directing over my entire life. Trembling and weakness, particularly in my legs, have become incredibly tenacious, and the pain associated with it especially incessant. It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms such as this.

"It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms." Share on X

As my legs continue to buckle when trying to stand, I can only lie down and surrender to the torment such symptoms have on my life. It is a constant reminder that I no longer have control over my illness. It’s accompanying symptoms once again prove that they play by their own rules. As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before.

It is easy to fall into despair and hopelessness, even depression when experiencing a surge of unrelenting and debilitating symptoms—photo by Yuris Alhumaydy on Unsplash.

"As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before." Share on X

The Grief and Burden of Being Chronically Ill; Leading to Feelings of Anxiety and Depression

As the hatred and distrust of my body continue to grow, it slowly develops toward hatred of myself also. Severely limited by the symptoms that continually plague me, I begin to feel useless. Weak. Worthless. A burden. The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear. Once again, the grief of being chronically sick overwhelming both my body and mind.

"The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear." Share on X

Anxiety and fear of the future haunt my thoughts as I worry that I continue to worsen; troubled by what FND will take from me next. The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control.

"The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control. " Share on X

But it’s not only anxiety of the future that continually haunts me. With the increase of falls that I experience, leaving the safety and comfort of home has become daunting and anxiety-inducing.

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms to contend with alongside the physical manifestations of chronic illness.

"As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms we are forced to contend with." Share on X

Disappointing Myself Because of Limitations

As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the limitations of my body and health. Things that once came effortlessly have now become difficult. I often find myself unable to get out of bed straightaway in the mornings due to the severe weakness in my legs, for example. The ever-growing limitations have made me more reliant on others. As a result, I often feel great disappointment in myself.

"As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the new limitations of my body and health." Share on X

girl crying while touching glass window — Living with disabling symptoms can result in anxiety about a lot of things, but especially about going out as we can never know when symptoms are going to appear. It can lead to a lack of confidence, isolation and depression.

Recently, with the increasing number of times my legs have collapsed, I have lost all confidence in not only them but going out. As a result, I have backed out of countless trips, anxious that my legs will do so while out. With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depressed feelings also.

"With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depression." Share on X

Switching Up Thoughts of What Came First

Many of the symptoms that I experience due to FND can also be signs of conditions such as anxiety. Anxiety itself can produce physical symptoms such as shaky legs, a racing heart and shortness of breath as examples.

The lies that depression and anxiety whisper to you can lead to self-doubt and the belief that the symptoms you are experiencing are all in your head and ultimately your fault—photo by **Kat Jayne** from **Pexels**.

For me, I am well aware of this as for many years, the symptoms I was experiencing, were attributed to depression and anxiety. Such conclusions only strengthened when physical tests came back as normal. It took many years and many many hospital appointments before receiving the diagnosis of a Functional Neurological Disorder and probable Cerebral Palsy. At that defining appointment, the specialist assured me that the symptoms weren’t due to depression or anxiety; and it was not ‘all in my head’ as I had heard many times before. Instead, the depression and anxiety I experience are a result of living with a long-term neurological condition.

"Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. They persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick." Share on X

But still, as depressed and anxious thoughts run throughout my brain, I begin to doubt this fact, however. Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. During my worst times with this illness, they persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick.

Chronic Illness: Forming A Battle Between Physical and Mental Health

In my history of living with FND, depression and anxiety have become adjoining features of my experience with it. But it is not only my experience. According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants. Research has also suggested that anxiety is more common in persons with a chronic disease than in the general population.

When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me

"According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants." Share on X

Physical and mental health are inextricably linked, both working in unison and having a significant effect on the other. When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me. But, I have also learnt that to thrive, I cannot focus on just one aspect of my health. Instead, I need to work on both physical and mental health to live a happier and brighter life.

"When battling through a severely debilitating flare, it can feel like as though my physical and mental health are conspiring against me." Share on X

October Link-Up Party with A Chronic Voice

In Chronic Illness

What Happens When Pain Becomes Chronic

September 13, 2020 5 Comments

It is hard to imagine a time when chronic pain did not play a significant part in my daily life. That time is incredibly hard to envisage as I lay here in excruciating, searing pain.

But there was a time when chronic pain, was just a mild annoyance. To me, it was just pain. Yes, it hurt and made life difficult, but it was something that I could handle. I thought that it was normal, a sign of growing pains and not of anything wrong, especially anything serious.

Oh, how I wish I could return to the days before the pain became chronic and overwhelmingly relentless. Before I could no longer remember what it is not to be in constant, excruciating pain. Photo by Anthony Tran on Unsplash.

Oh, how I wish I could return to those days. But today, especially on one of my worst days I can’t imagine what it is not to be in pain. Or a time when it was anything but chronic. The time when the problem was considered normal and not a permanent reminder of the neurological disorder that has consumed my entire being.

"But today, especially on one of my worst days I can't imagine what it is not to be in pain. Or a time when it was anything but chronic." Share on X

Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality. One that continues to flare and get worse, and to which I have to learn to adapt to time and time again.

"Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality." Share on X

Often Feeling Nothing Than The Pain Itself

Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days. The days in which chronic pain consumes the entire day, sometimes days.

"Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days." Share on X

It is on these awful days that it seems that the only sensation that I am aware of is pain. The feeling of the soft material caressing my skin or the cold of the metal of the bracelets surrounding my wrist does not register. Instead, I am only aware of the throbbing, squeezing and stabbing pains that dominate deep inside my weakened legs.

curled up in a foetal position because of pain — When pain becomes chronic, it can often seem like the only feeling we can discern is the pain that is ravaging our bodies.

The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops. Pain is often wholly overwhelming, entirely unpredictable, and frustrating. One from which we have no respite or holiday from, however much we wish that we could.

"The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops." Share on X

Chronic Pain Is Gruelling and Exhausting To Live With

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

"Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions." Share on X

But often, the difficulty in navigating such terrain is that it continually changes. And as the territory changes, so do what we can tolerate. No one day is predictable; one day, I might be able to accomplish the tasks I set for myself but unable to do anything at all on another. Some days I able to push myself further than my limits but on others doing so only makes the pain worse.

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered.

"Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered." Share on X

Tempting To Hold Onto Hope; The Thought That It Will Get Better

Despite the ferociousness of chronic pain, however, I still find myself holding onto the hope that it will change. The hope that the pain will miraculously disappear never to return and life will forever be different.

However much I wish that the pain will disappear I wake up disappointed when I wake and it remains.

Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same; and life isn’t any different than the previous day. Heartbreakingly, of all is that when the pain becomes chronic, this scenario becomes our hellish version of Groundhog Day.

"Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same." Share on X

The Dream of Running Away From The Pain

When pain firsts start, or before it becomes chronic, it is easy to run from it. At first, pain is benign and only slightly bothersome, so distraction is easy, and pain is something that you can handle and put up with relative ease.

When it becomes chronic, however, pain is much harder to cope with, and making distraction much harder to implement in life. At this moment, whilst in unbearable pain, I wish I could run from it; running from chronic pain is something that I always wish I could do. It’s as if by denying it’s very existence will stop it from hurting and not affect me or have the impact it does on my life.

"Running from chronic pain is something that I always wish I could do. It's as if by denying it's very existence will stop it from hurting and not affect me or have the impact it does on my life." Share on X

However, I am unable to run from the pain that is destroying my legs and my life. Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity. Nor does time stand still while consumed by pain. No, time and life continue while pain perseveres with its destruction, and I still suffer.

"Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity." Share on X

But my running from the pain, I am also running from the reality of my life with chronic pain. By doing so, I am unable to address my chronic pain. Only by addressing it and the FND that has consumed my life, I can move forward and find ways to live with it instead of against it.

Thoughts of Mending The Pain, Until It Becomes Chronic And Mending Can No Longer Transpire

Pain is something that everyone has experienced. We hurt or injure ourselves, and pain suddenly appears. It’s often excruciating and distressing, but there is comfort in the knowledge that it is temporary, with an expiration date. We know that our bodies will mend itself, and the pain will dissipate.

But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight.

Life becomes a battleground; us versus the pain

"But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight." Share on X

Instead, pain begins to dictate our lives. It dictates whether we can get out of bed, wash our hair, leave the comfort home or even meet a friend for lunch. Life begins to revolve around pain as every decision; every task needs to consider it as to whether we can say yes to it.

"Life begins to revolve around pain as every decision; every task needs to take it into consideration as to whether we can say yes to it." Share on X

We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it. And so we quickly learn that mending may never be possible, so instead are forced to find ways to cope with it as best we can; anything to stop it from driving us crazy or continually stealing even more pieces of our lives.

"We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it." Share on X

In what ways, has your life changed when your pain became chronic?

This blog post was written for Pain Awareness Month and as part of the September Link-Up Party with A Chronic Voice.

In Chronic Illness

The Most Painful Parts of Living With FND

August 27, 2020 5 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 August, I use the prompts to discuss the most painful parts of living with FND.

If asked what the most challenging part of living with a chronic illness is, what would be your response? Many assume that the immediate answer would be the symptoms that accompany it.

At first, I agreed that the symptoms were the hardest part of living with FND. It is hard not to agree that they are the worst aspect of living with FND, especially at a time when symptoms are exceptionally debilitating.

For example, the weakness and trembling in the legs have become so severe that everything has become a monumental struggle. The constant dizziness is so intense that nowhere feels safe. And relentless, crippling pain so terrifyingly unbearable that I am often unsure that I would make it through the day.

But as I continue to ruminate on the question, I realised that there are numerous painful aspects of living with FND. The truth is that the hardest part of living with a chronic illness continually changes. The answer to the question may be dependent on the type of day I am experiencing or how I am feeling at that particular time. Some things once were the hardest part of living with FND but became more manageable to live with over time. The list of the most painful aspects of life with FND has only grown over time as the condition continues to worsen and challenge me and my life.

"The truth is that the hardest part of living with a chronic illness continually changes. The answer to the question may be dependent on the type of day I am experiencing or how I am feeling at a particular time." Share on X

So what are some of the most challenging and most painful aspects of living with FND? Here are some of the answers that immediately sprung to mind as I contemplated the question.

The Most Painful Parts of Living With FND

The Unlocking of Uncertainty

Everyone likes and feels comfortable with certainty. Certainty locks the monster that is uncertainty away inside a prison cell. But when living with a condition such as FND, uncertainty becomes unlocked from its prison to become another prominent part of life with a chronic illness.

"Certainty locks the monster that is uncertainty away inside a cell. But when living with FND, uncertainty becomes unlocked from its prison to become a prominent part of life with a chronic illness." Share on X

The frustrating uncertainty that accompanies chronic illness makes it extremely challenging to plan for the future, either the immediate future or the long-term. Every day met with impending apprehension, never being able to anticipate where or when symptoms will make an appearance. Forever uncertain whether each new day will bring few or no symptoms, or met with the whole set.

"Every day is met with impending apprehension, never being able to anticipate where or when symptoms will make an appearance. Forever uncertain whether each new day will bring few or no symptoms, or met with the whole set." Share on X

Life with FND, anxiety has been a constant companion in my life with it. Feelings of anxiety will arise about things that might or might not happen, and very often worried about things that I never needed to worry about in the first instance. When living with an illness, instead you become anxious about things that will very likely happen – you know certain things like experiencing a flare will happen, you just don’t know when.

"When living with an illness, instead you become anxious about things that will very likely happen – you know certain things like experiencing a flare will happen, you just don't know when." Share on X

The weakness and trembling in my legs often give way with no warning. Legs giving way, leading to falling, resulting in bruises has become a certainty in my life, but remain entirely uncertain when such an incident happens. And something that causes high anxiety in my life, as I am always on edge, waiting for it to happen, and worried that it would happen somewhere dangerous such as in the middle of a road.

A Continuing Number of Limitations

Accepting the label of someone with a neurological disorder and a disability was immensely challenging. I had to confront the reality of the far-reaching impact that the condition and its accompanying symptoms were having on me and my life. And as the years increased, symptoms worsened, becoming more debilitating and therefore limited in what I was able to do.

woman wearing distressed denim jeans sitting down inside room — So much time spent sitting down as the trembling in the legs limits me in what I can do in so many ways.

"FND has forced me to confront the reality of the far-reaching impact that it and its accompanying symptoms have on me and my life. The limitations it has causes is great and continues to grow." Share on X

As the years increase, it seems that the weakness in my legs is continuously deteriorating. The length of time I can stand because of it and the pain that ravages them is forever decreasing. It is this symptom that limits me the most. I am unable to do things or go anywhere that requires standing for any length of time. The distance I can walk for has also decreased, therefore limiting me even further, and becoming reliant on other people to be able to go out.

Studying, But Still Learning Nothing

At University, when needing to write essays, a process I always enjoyed was researching the given topic. I loved trolling through books and journal articles, finding the necessary information to back up my arguments. This skillset came in useful when diagnosed with a neurological condition to enable me to find out all I can about my diagnosis.

You can read all the books on FND there is and still have so many unanswered questions.

Unfortunately, a disorder like FND, however, the unknowns heavily outweigh the knowns. The books or reputable websites online could not tell me why this happened to me, or how to make it go away. It was like being stuck in a long dark tunnel, with the end nowhere in sight. And what I could glean on what treatments and therapies have helped other patients I had already tried with no benefit.

"Unfortunately, a disorder like FND, however, the unknowns heavily outweigh the knowns. The books or reputable websites online could not tell me why this happened to me, or how to make it go away." Share on X

It was demoralising; making me feel like a lost a cause and definitely one of the lowest points on my journey with FND.

Watching Everyone Else Moving On With Their Lives

Another of the ubiquitous aspects of living with any chronic illness is isolation. The experience of being ill itself is isolating, as we observe everyone else around us as being healthy, active and able-bodied. But it’s also isolating as we are frequently left behind; left at home. As a result of the severity of the symptoms, I am often unable to participate in the world, my community or life, as I once could.

"The experience of being ill itself is isolating, as we observe everyone else around us as being healthy, active and able-bodied. But it's also isolating as we are frequently left behind; left at home." Share on X

Instead, I am stuck at home, often in bed, crippled with pain and fatigue. Through the lens of social media, I watch others moving forward with their lives in ways that I am unable. And reaching milestones that I always imagined for myself but now feels too far out of reach.

When living with a chronic illness like FND, a lot of things begin to feel out of reach – friends, our dreams and aspirations and reaching milestones. Photo by **fotografierende** from **Pexels**

"Through the lens of social media, I watch others moving forward with their lives in ways that I am unable. And reaching milestones that I always imagined for myself but now feels too far out of reach." Share on X

Due to the severity of the symptoms I live with, I am unable to go out unless accompanied. As an adult, this is incredibly embarrassing and difficult. A part of my life that makes me feel like a child. And fear that like Peter Pan, I will never grow up.

A Fear That Healing Will Never Be

Like I fear that FND will never allow me to grow up, I also fear that it will never leave. I fear that the condition has left an indelible mark on my life that will never leave. And so perhaps more than I anything, I fear that I will never get better.

"I fear that FND has left an indelible mark on my life that will never leave. And so perhaps more than I anything, I fear that I will never get better." Share on X

The offer of a new drug, or new therapy offers renewed hope; the hope of getting better, or at least improving. But, that same hope is soon extinguished as improvements cease to materialise.

Perhaps I will always be this way. Maybe I won’t. But to live well alongside FND and its accompanying baggage, maybe I need to redefine my definition of healing.