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‘A Day in the Life’ With FND

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

In brief, illnesses and/or disabilities I have:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What my morning routine is like in general:

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

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

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

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

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

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

What I consider a daily self-care must do:

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

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

The household chore I have the most trouble with:

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

A task I wish I had more help with:

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

The part of the day I like best:

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

What’s breakfast, lunch and dinner typically like:

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

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

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

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

How do I unwind for the evening?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Review: ‘Please Read This Leaflet Carefully’

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I don’t usually write book reviews, but after reading the brilliant ‘Please Read This Leaflet Carefully’, it was one I had to tell everyone about.

Books As A Reflection of Our Own Lives

Those who love to read do so for a variety of different reasons. Some open the book and devour the words on the pages for escapism. To escape from personal problems, or pain and disappear into a different world. Others enjoy for the sheer enjoyment of exploring new and varied landscapes or experiencing new adventures.

coffee and reading a book - a favourite past time of mine
Sitting in a coffee shop with a hot drink while devouring the latest must-read book happens to be one of my favourite past times when out and about

Sometimes, however, we often want to open a book and find it to be a mirror; one that reflects our feelings and experiences; to make us feel a little less alone. A book that as we turn the pages, they make us nod and mumble affirmative acknowledgments of the truths that lay before us.

A Lack of Books About What It Is To Live With Pain and Illness

As someone living with a neurological disorder, experiencing chronic pain, there is a lack of books that accurately reflects this. Disappointedly books that deal with such issues generally share information to understand better the diagnose. Filled with scary and complicated medical terminology and alarming statistics regarding the very worse case scenarios.

Other books, however, are on the other side of the spectrum, full of sugary optimism, which promises a cure with a positive mental attitude. It is very little in the way of a happy medium between the two. And very few novels depicting characters living with a chronic illness or chronic pain in which is both realistic and hopeful.

Thoughts on ‘Read This Leaflet Carefully’

Reading the original and thought-provoking novel ‘Please Read This Leaflet Carefully,‘ therefore, was like a breath of fresh air. It tells the story of Laura Fjellstad, living in New York, in her thirties, and coming to terms with being a newly single mother to her young daughter. As well as this, she is also trying to come to terms with a body wracked by chronic pain. Pain caused by severe endometriosis that has left her internal organs scarred and fused. So severe that Laura needs extensive surgery to try and mediate the effects of the condition. I don’t suffer from endometriosis, like the central character, but the grief and limitations of living with chronic pain, however, felt all too familiar and personal as I devoured each page.

Although Laura, is the main protagonist it feels that pain, however, takes centre stage, becoming the main focus in the life of the main character which as those living with chronic pain will relate as it too can often feel that it happens in our own life.

“She knows that I still have to ration my energy and be careful about everything and still, regardless of what I do, pain still claims a certain percentage of my life.”

A Book That Accurately Describes The Impact and Scope of Chronic Pain

What makes this book, feel fresh and original than anything else out there is the reverse chronology from present day to childhood. This storytelling device makes the novel that more heart-rendering, highlighting the devastating impact and scope that chronic pain has on those who endure it. By also, showing moments in her life where she is “better”, or prior to a diagnosis, it shows that pain and illness are still influencing her life.

As the book jumps back in times, it does so to describe the other significant moments in Laura’s life, through her eyes. Moments including first moving to New York and meeting her husband; her past relationships (with both men and women). And the diagnosis and medical problems that have ramifications for the course of her entire life. It then transports us back to her childhood and her love of figure skating, which provides her with the freedom she deeply craves but is stopped by the limitations of pain and illness.

Expressive and Beautiful Writing That Jumps Off The Page

I love the beautiful and vivid descriptions of different moves, jumps, and spins from figure skating, interspersed throughout the book. These descriptions are so expressive; the graphic images jump off the page as they if performed in front of your eyes.

“I hadn’t done anything with my body in years; it didn’t even feel like it belonged to me. It was something I’d been saddled with; uncooperative, painful, stiff, and embarrassingly weak.”

curled up in a foetal position because of pain
‘Please Read This Leaflet Carefully’ brilliantly describes the grief, loneliness and isolation of living with chronic pain with such clarity

Those living with such conditions will know that the effects of chronic pain go beyond the person living with it. Pain and illness have an impact on everyone in the family, as well as close friends. The need to be able to be open about the pain and other symptoms, but others being uncomfortable to listen to the intimate problems with our bodies. These heart-rendering portrayal of the invisibility and powerlessness felt all too familiar. It will sadly resonate with many who suffers or has suffered from a chronic condition.

“It’s crystal clear to me that no one wants to hear about it,” she thinks. “But I will never finish needing to tell how much it hurt, how much it hurts, how bad it is.”

A Book That Is Not Just About Suffering; But About Finding Meaning and Experiencing Life Within It

Despite this, however, the book is neither bleak or dark. Yes, it is a powerful and intimate account of what it is truly meant to live with pain. That despite our attempts to break from the limitations of pain and illness, often they are. But, the book is not just about suffering; it is about finding and experiencing life within it. It is about the drive and ambition that we still have, even when our bodies begin to deteriorate before us.

The author Karen Havelin writes with profound clarity, truth and often humour regarding the frustration, and grief of attempting to navigate a world which is often obstinately not built for her. But, which Laura against all the odds finds despite adversity and overwhelming obstacles. It is ultimately a story of hope and finding things that you once believed to be out of reach, only when we are brave enough to try.

Final Thoughts

As I read and devoured each page with ease due to the eloquent words before me, I underlined many passages which rang with such accuracy when regarding my own experiences with pain and illness. It is a story with tremendous insight that made me feel a little less alone, and ultimately isn’t that we all crave?

Finally, a book that I am able to read and resonate with; one that encapsulates what is to live with pain with pure eloquence. A book that we can give to others when they cannot understand what it is we go through every day. ” I can’t imagine what it is to live with such pain” someone will say. In response, we can hand them this gem of a book, and say “Read this, then you may better understand.”

In the UK, Please Read This Leaflet Carefully is published by Dead Ink Books and is available from the leading book retailers.

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Uncertainty of Living With Chronic Illness

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I have used the prompts to look at the uncertainty and unpredictability of living with chronic illness.

The Repetition of Illness and Its Symptoms

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

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

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

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

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

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

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

The Wondering Questions of Uncertainty and Unpredictability

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

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

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

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

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

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

Pain and Illness Requires Turning Into Uncertain Roads

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

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

Getting Used to Living With Uncertainty

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

black and white photo of woman staring out of a window
"Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will." Share on X

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

Desiring Certainty and The “Can” In Life Ahead

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

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

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

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

In The Mirror: Body Image and Chronic Illness

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The middle of May saw Mental Health Awareness Week hosted by the Mental Health Foundation. The theme this year focused on body image; how we think and feel about our bodies.

"According to the Mental Health Foundation, 30% of all adults felt so stressed by body image and appearance that they felt overwhelmed or unable to cope." Share on X

Social Media And The Influence On Body Image

In the age of social media, we are more aware than ever of how our bodies look. In an age where we are comparing our bodies with others. More aware than ever regarding the idea of perfection. Seemingly more aware than ever when our bodies do not fit in with the social norm.

"In the age of social media and apps such as Instagram we are more aware than ever of how our bodies look…and when our bodies do not fit in with the social norm." Share on X
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Formal nights are a lovely excuse to get dressed up in a fancy dress and feel a little bit glamorous, especially when you are battling the effects of #chronicillness and #chronicpain which makes you feel anything but glamorous and elegant. You can’t see it but I am in a terrible #painflare forced to take painkillers and so also battling terrible #nausea!! Oh, the wonders of #makeup!! Big thanks to @simplyabbyrae from the @benefitcosmeticsuk counter in #Boots for helping me pick out some lovely products and tips on how to apply!! #spoonie #chronicillness #chronicpain #chronicillnesswarrior #chroniclife #neurologicaldisorder #FND #functionalneurologicaldisorder #pandoaurora #formalnight #cruising #travel

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Every one of us has flaws; everyone has insecurities and things they are not happy with regarding their body or appearance. I, myself, for years, have not felt satisfied with what I see when I look into the mirror. For years, I have wished that I was prettier, thinner, or that I didn’t need to wear glasses all the time. When looking at my reflection in the mirror, I hear the cruel remarks and gibes from others; comments which have since stayed with me. Comments which still affect my self-esteem and how I think and feel about my own body and appearance. It’s probably why that there are not many selfies or photographs of myself in general on Instagram; because I am insecure and unhappy with my appearance.

"For years, I have been unhappy and insecure about my appearance and body image.  A reason why there is a lack of selfies and photographs of myself in general on Instagram or even on my phone." Share on X

Illness Can Cause A Hate Relationship With Our Bodies

When diagnosed with a chronic illness, the insecurities concerning body image grow exponentially then we could ever think possible. We develop more of a hate relationship with our bodies, stronger and unyielding to change than ever before. When living with a chronic illness we experience pain, discomfort, and loss of control. All of which also can lead to a change in physical appearance. And which can have a detrimental effect on self-esteem and how we feel about our bodies.

"When living with a chronic illness, we experience pain, discomfort and a loss of control. All of which can lead to a change in physical appearance. And which can have a detrimental effect on how we feel about our bodies." Share on X

The Influence of Illness On How We View Ourselves and Our Bodies

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. A body that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. A game that I appear to have no control in, and which the symptoms have the upper hand. It continually likes to keep me on-and-off my toes, both figuratively and literally! As I make plans and wanting my body to help me fulfill those plans, my body, however, often have other aims, having a mind of its own.

Chronic illness causes many insecurities and unhappiness regarding both appearance and body image as the symptoms associated with it ravages our insides and sometimes even outward appearance
"It is hard to feel positive about a body that reminds me of its dominance with its unpredictability. A body that reminds me that it plays by its own rules. How can we love a body that treats us as it's own worst enemy?" Share on X

How can we love a body that treats us as it’s own worst enemy?

As the limitations caused by symptoms increased, becoming more disabling. The effects of such symptoms gradually became more visible, causing falls in public; the pieces of my already fractured body image became even more broken. Broken pieces scattered, and seemingly nothing I could do to repair the damage and put the pieces back together again.

Such debilitating and unpredictable symptoms can effect self-esteem, making us insecure and feeling like a prisoner in our own bodies

The shame and embarrassment when such incidents only add to the insecurities surrounding my body image. It affects my self-confidence, such as the worry about what others may think. But also, it affects my confidence regarding venturing out of the safety of home. No longer able to trust my failing legs, and the unpredictability of when such attacks will occur only adds to this — a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body.

"No longer being able to trust my legs and the unpredictability of when such attacks will occur only added to my negative body image. And a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body." Share on X

Learning To Love Ourselves And Embrace Our Flaws

But, unintentionally the neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but am unable to divorce.

"Life with a neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but which I am unable to divorce." Share on X

I need, therefore to learn to accept the constant presence that the condition has and will continue to have on my life. I need to remember that, as difficult it may be, that my body, with all its flaws and complications, is also my permanent home. A home that with all its problems and the insecurities it causes I need to learn to embrace and love. To look beyond what my body can no longer be able to do, or have difficulties with to what it can still do for me. To remember how far I’ve come and what I’ve achieved despite the obstacles created by illness. And to remember that despite everything, everything that our bodies throw at us, we are still here. Surviving. And one that is still keeping me alive.

"To develop a more positive body image, I need to look beyond what my body can no longer be able to do, to what it can still do for me. To remind myself that I am still here, and my body is still keeping me alive." Share on X

Perfection Is Merely A Social Construct; Not Reality

It’s easy to look at social media, such as Instagram and feel dissatisfied with our apparent flaws and blemishes against the idea of perfection on our screens. But, the reality is that perfection does not exist. Perfection is merely a social construct; no one or nothing is perfect. The images we see online have often been airbrushed. Or the many filters that are available on our favourite apps have been used to make the photograph worthy of being shared on social media.

"Perfection does not exist. The images we see plastered on social media have been airbrushed, or filters have been applied to them to make the photograph worthy of being shared." Share on X
The images we see on social media, such as Instagram have often been airbrushed or put through popular filters that give us an impression of perfection. Perfection, however, does not exist

Learning to love yourself is not an easy process, insecurities, and negative feelings toward my body will always be something I’ll need to fight. Body confidence and body positivity is something that I will have to continue working toward. I am not sure how, but I am sure I will eventually get there. But the more I read, the more I learn that everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than.

Quote by Steve Maraboli in a white speech bubble with a pink marble effect background. The quote reads "There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty."
"Everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than." Share on X

There are many quotes that state that authenticity and being yourself is the purest kind of beauty there is. The moral of the story, therefore, is to be true to who we are, and embrace who we are, flaws and all!

"To learn to be more body positive we need to learn to be true to who we are, and embrace who we are, flaws and all!" Share on X

How do you practice body positivity and being kind to yourself?

In The Mirror: Body Image and Chronic Illness
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In Awards

Disability Blogger Award (x2!)

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On Sunday morning, I received a nomination for an award. And today, Thursday, I received another comment on my recent blog post letting me know I had received another nomination! The award is titled the Disability Blogger Award which recognises and acknowledges those bloggers whose niche is disability, chronic illness, mental illness or special needs.

Fellow blogger, Georgina from the Chronillicles blog had the idea for the award. She decided that disability and chronic illness deserved more recognition for their efforts and decided to create the said award.

The Disability Blogger Award Rules

The Disability Blogger Award Rules

  • Thank your nominator
  • Recognise Georgina from Chronillicles as the creator of this award and link her URL – https://www.chronillicles.com
  • Use the Disability Blogger Award logo somewhere in your post
  • Copy these rules onto your post
  • Answer your nominator’s questions
  • Write 5-15 of your own questions (they don’t need to be illness related)
  • Nominate 5-15 other disability, chronic illness, mental illness, or special needs bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated

Firstly I would like to thank the lovely Liz and Nikki who have kindly nominated me for this award. I am honoured and extremely flattered to be recognised amongst so many other wonderful writers.

Liz, blogs at the brilliant Despite Pain which offers readers many useful and insightful tips on how to forge a life despite pain. The blog also radiates hope and positivity that a happy and content life can still be found outside of chronic pain.

Nikki, from Brainless Blogger, is one of my favourite blogs to read. Nikki shares life with chronic illness and chronic pain in such a beautiful and eloquent, and despite the writing being deeply raw and personal, it’s profoundly relatable.

Thank you both.

Please do visit their blogs to enjoy their amazing writing and follow them.

Liz’s questions and my answers:

1. If you didn’t have a health condition, but you still wanted to blog, what would be your niche?

Books! Definitely books; sharing what I have been reading and insights into my favourite reads. Other than writing, especially, my work on this blog, books are my other passion. I have loved reading since childhood and can usually be found with a book in my hand. And my Kindle is one of my essential items on my packing list for holidays!

2. What is your favourite season and why?

Due to the symptoms associated with the neurological disorder I live, with, I often find that the hot and cold weather can exacerbate my symptoms. So, Winter and Summer can be problematic seasons for me, with flares becoming routine during the months these seasons reside. So, I would day Spring has become my favourite season – with it being not too cold and reasonably warm without the heat being unbearable. I also love all the colour and beauty that can be found during the Spring months, especially in nature. I do enjoy trips to the garden centre to peruse the beautiful and colourful flowers. And also, I am able to sit outside, even just in the garden, to get some welcome fresh air instead of being cooped inside the same four walls.

3. If you could time travel, which time would you travel to?

History was one of my favourite subjects when I was at school, and although I found it incredibly fascinating to learn about the periods in history we studied, the events and how people lived was usually unpleasant and gruesome. Place and events that I would not want to experience. Instead, I think it would be intriguing to visit the 60s or 70s when my parents were growing up and to meet and get to know my grandparents, especially those I lost before I ever really got to know them. It would also be interesting to know what my Mum and Dad were like before they became parents!

4. Healthy salad or chocolate brownie?

Although I enjoy eating healthily, allowing some semblance of control whereas our lives are usually controlled by our illnesses, I would have to choose the chocolate brownie! I am a bit of a chocoholic!

5. What’s the last book you read?

I just finished the incredibly moving ‘If Only You Were Here’ by Alice Peterson. It was a brilliant and captivating book, and a must if you enjoy an emotional read like me!

6. If you ruled your country, what would be your first new law?

What a brilliant question! I hate unkindness or bullying so I would create a ‘Random Act of Kindness’ Law to encourage people to be kind and help each other, even if it’s just in small, inconsequential ways. There are many horrible acts of violence in the world, so it would be lovely to see more good instead.

7. What is your biggest pet peeve and why?

People using disabled bays when they don’t have a blue badge! It is always annoying when I am out with my carer and am unable to stop somewhere I need to because there a lack of a suitable parking space, especially on days where my mobility is worse.

8. What’s the favourite blog post you’ve written?

Tough question as I didn’t realise how many I’ve written! One which I am proud of, and one which I loved writing was ‘Embracing The Warrior Inside.’ It’s a blog post that I can still look back and read, especially on days where I’m feeling low, and it reminds me of everything I have overcome and how strong I am. I hope everyone enjoys it as I had when I write it!

Nikki’s questions and my answers:

1. What is your favourite pain or illness distraction and why?

Reading; it’s one of my favourite past time’s anyway, but when I am in pain or overwhelmed by the other symptoms that I experience, I love how it can transport me into another world, or even allowing me to become someone else for a short time.

2. Do you have a creative outlet?

I have this blog obviously but other than that no. I did use to love making cards but found it to be very expensive and became very difficult due to trembling in my hands. Still, I do love writing though and keeping up with social media keeps me occupied.

3. What is your favourite book and tell me why

I have so many! My all-time favourite and one which I read, or at least try to is Little Women by Louisa May Alcott. It’s a classic, one which I have loved since I was a young girl. I don’t have any sisters myself, and loved the relationship between the four sisters; it’s a really heart-warming story.

4. When you are in a mental funk what do you do?

I look at my positivity board, filled with photographs of happy memories, as well as inspiring and uplifting quotes. Or if I am feeling a lack of confidence, I take a look in my jar of joy and remind myself of everything I have achieved despite chronic illness and the symptoms with which I live.

5. When was your last vacation and how was it?

My last holiday was last June, a cruise around Norway and Iceland, and a brief stop in Dublin! Cruising can be difficult, especially with a balance disorder and even more so when the seas are rough, but again it was a reminder of my resilience and strength in spite of the neurological disorder with which I live every day. And despite the many difficulties, I still am looking forward to future adventures.

My Nominees

The most difficult part is choosing nominees, especially as there are so many wonderful bloggers within the disability and chronic illness community. Even more so, when many of my favourite bloggers have already deservedly been nominated by other people. Many of the nominees are other bloggers who

Narrowing it to only 10 bloggers was incredibly difficult so I am sorry for anyone I have missed, as I think you are all amazing!

My 10 Nominees:

Make sure that you take a look at their incredible and inspiring blogs and look them up on their social media pages.

My questions for my nominees:

  1. If you had to write about something other than disability/chronic illness/mental illness or special needs, what would it be and why?
  2. If you could travel anywhere in the world, where would it be and why?
  3. What is the biggest thing you’ve learned about yourself since becoming disabled or chronically ill?
  4. What is your favourite comfort food?
  5. Name a literary character you can relate. What is it about this character that you can relate?
  6. If you had to recommend one place to visit near to where you live, what would it be and why?
  7. What is your favourite TV show to binge-watch when you are having a bad day?
  8. What is the one blog post you are most proud of and why?
  9. If you could recommend one blogger or blog to read, which would it be and why?
  10. If you were suddenly only able to use one social media site/app which would you choose and why?

Your blogs and the work you do is brilliant, but I know what continued health struggles can get in the way of blogging, so there are no time constraints with replying to the nomination. Take your time and congratulations to all!

And thanks again to Liz and Nikki for your nomination!

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