disability Archives – Page 2 of 5

In Chronic Illness

Sometimes, I Don’t Want To Talk About It

April 30, 2021 2 Comments

Do you ever listen to music and instantly connect with the lyrics of a song? Lyrics that reflect your own life and experiences that it feels it was written just for you? I recently had such an experience. Sitting upright in bed with my laptop on my lap, ready to work, I selected a random playlist on Spotify. A soft relaxing melody started, and the dulcet tones of Dina Carroll began. As she sang, “I Don’t Want to Talk About It,” a shiver ran up my spine. It resonated with me, as I often, too, don’t want to talk about it. Sometimes, I don’t want to talk about my health condition or disability.

It might seem surprising for someone who has spent much time talking about their health condition and disability online. Many would assume that I am completely comfortable about it since I share so much about it on social media. But in fact, it couldn’t be further from the truth.

The truth is, I am not confident or comfortable talking about my health condition or disability, particularly offline. It has and still can be a struggle for me to express the despair said ailments have on my life. Nor do I find it easy to articulate the full extent of the pain I constantly experience. Or the gravity of the other symptoms that are constantly with me. It can be hard to put in words just how much control and influence such symptoms have on every second of every day.

"I do not find it easy to articulate the full extent of constant, debilitating pain. Or the gravity of the other symptoms that are constantly with me. It is hard to put in words how much control such symptoms have on every day." Share on X

I may write and talk about my health and disability a lot online, but still, there are times when I don’t want to talk about it. Photo by **Kat Jayne** from **Pexels**

The Struggle of Opening Up About My Health Condition & Disability

Although only diagnosed a few years ago, I have been experiencing symptoms since a very young age. It feels that severe aching pains in the legs, dizziness and weakness have always been with me. However, as such symptoms started at such a young age, I could not articulate what I was experiencing. I was much too young to be experiencing such things. And much too young to have the appropriate language to describe what it was I was experiencing or how such symptoms made me feel.

As the years progressed, I noticed that other children seemed to be more carefree than I was. They ran around unbothered by strange, unusual symptoms, unlike me. Me, who struggled with balance and pain and stiffness throughout my legs. And me who felt dizzy and off-balance, especially in enormous places with high ceilings. But other children seemed to do things that I found difficult with great ease. Other children unburdened by things that were a heavy load for me to carry.

Wanting To Hide My Disability Due to Embarrassment and Shame

I was afraid of acknowledging and speaking openly about what it was I was experiencing. I was afraid that others would see me as being different or odd.

"Sometimes I don't want to talk about my health condition or disability for fear of being seen as different or odd." Share on X

As time went on and my condition progressed, becoming worse and more evident, awkward situations became part of my norm. Tripping over, falling over straight onto my face, and legs collapsing from under me often leave me red-faced with embarrassment. Such incidents leave me feeling embarrassed about my disability, leaving me wanting to hide it even more.

"Tripping over, or falling over straight onto my face, often leave me red-faced with embarrassment. Such incidents leave me feeling embarrassed about my disability, leaving me wanting to hide it even more." Share on X

So, when I can, I do my best to hide my disability. I desperately want to fit in, in a world where everyone sees me as being different. But by talking about my health openly, I worry that it would only encourage more questions, more doubts and confusion, and more stares.

"When I can, I do my best to hide my disability. I desperately want to fit in, in a world where everyone sees me as being different. But by talking about it, I worry that it would only encourage more questions, and more stares." Share on X

I’m Afraid Of Other People Only Seeing Me As The ‘Sick Girl’

Lately, I have noticed that more and more of my conversations centre around my chronic illness and ensuing disability. As a result, people are always full of questions; “What is your diagnosis? “How does your diagnosis affect you? “How have you been feeling lately”. Or constantly being asked what happened to my leg. As if my using a crutch results from an injury and not because of a disability. The answers to such questions have become ingrained into my mind, almost like a script. Still, it can be exhausting to repeat the same information many times over.

When meeting new people, my neurological condition is often the first item on the agenda. I know that people do this out of concern or worry. Or perhaps in an attempt to make me feel less self-conscious about my constant need for a mobility aid. But instead, I worry that my whole self-identity is that of the ‘sick’ girl, and that is how others see me.

"Sometimes I don't want to talk about my chronic illness or disability because I worry that by doing so, my whole self-identity is that of the 'sick' girl, and that is how others will see me." Share on X

I sometimes don’t want to talk about my disability because I’m worried that people will it, before they see me as a person.

I know that I am so much more than my diagnosis and disability. Still, I worry that by talking openly about my life with FND and my disability, I only add to the impression that they define me. Or the most important thing that makes me me. By speaking so publicly about my diagnosis, I worry that they will become the only thing people see when they look at me.

I am so much more than a label. I want people to see me the person, and not me, the patient.

"I am so much more than a label. I want people to see me the person, and not me, the patient." Share on X

Sometimes I Don’t Want To Talk About My Disability

Although I have become better at accepting and discussing my neurological disorder and subsequent disability, I still have bad days. Moments that I wish I could be like everyone else and didn’t struggle with mundane things that come naturally to everyone else. I yearn to be just your average 30-something with a career and family. I wish that I didn’t have to plan everything and ensure I have assistance at all times.

There are times I want to hide or disguise my disability and mobility impairment because I have and still can feel different and left behind because of it. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget. I find films, book and the latest TV programmes much more interesting to talk about than my disability.

"There are times I want to hide my disability because I have and still can feel different. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget." Share on X

There are times when I want to hide my condition and disability because I want to feel normal and pretend I’m like everyone else, at least for a little while. Photo by **Daria Shevtsova** from **Pexels**

Sometimes I don’t want to talk about my disability because doing so only reminds me of the struggles, challenges and obstacles I constantly face. Talking about them reminds me of all the hurdles I still face, which is scary and overwhelming. At least, by talking about something else, I can forget they even exist for a little while.

"Talking about my illness and disability reminds me of all the hurdles I still face, which is scary and overwhelming. At least by talking about something else, I can forget they even exist for a little while." Share on X

So, Why I Do I Choose To Blog and Talk About It

It may sound hypocritical for a person who chooses to blog about their chronic illness and disability to write about why they often don’t want to talk about it. So why do I? I share my experiences of living with FND and my disability to help others feel that they are not alone. There are plenty of people out there who feel lost, broken, and alone because of this misunderstood diagnosis. I am all too familiar with such feelings. I experienced them during those years, searching for what wrong with me. Still overwhelmed by these feelings due to the frustration over the lack of help and support out there for those living with FND. So, I write so that people going through what I did might find comfort and reassurance in my words.

I also want to, and hope I do, show people that it is possible to overcome challenges. And possible to enjoy things that you may think not possible even when overwhelmed by debilitating symptoms.

I am ironically talking about chronic illness and disability by telling you that there are times I don’t want to talk about it. There are times when I want to hide my health condition and disability. And times when I’ll happily talk about it with you.

Sometimes I Need A Break From Talking About My Health and Disability

But sometimes, I need a break from talking about my health condition and disability. I need a break because it sometimes feels that so much of my time is spent talking about it. Sometimes I would rather spend my time talking about the weather, or what I am reading or what was on television last night.

"Sometimes, I need a break from talking about my health condition and disability. I need a break because so much of my time is spent talking about it. I would rather spend my time talking about books or what was on TV last night." Share on X

There is so much more to be than FND or my disability. Sometimes I’d rather my focus be on those things rather than dwelling on illness and impairment.

Sometimes I want to be me and not me that has something wrong with them.

In Chronic Illness

From Shame to Pride: Finding Pride in Disability

August 15, 2020 3 Comments

I am not sure if I’d consider myself disabled. To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don’t look disabled, does that mean I’m not? At times I felt the condition did not disable me significantly and could get on with daily life with relative ease. Despite this, however, I am interested in events that raise awareness. Still, I was surprised about the existence of Disability Pride Month.

"To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don't look disabled, does that mean I'm not?" Share on X

Disability Pride aims to promote disability as a natural part of human diversity, and beautiful one at that. Photo by **Ann H** from **Pexels**.

A lack of visibility surrounding disability and issues related to it within society still exists despite efforts to change this. And perhaps a significant reason for my ignorance of the existence of Disability Pride. Disability advocates use the month and its celebrations, such as parades, for example, to raise awareness of the social inequalities that disabled people continuously face. To change how people think about and define disability. And to attempt to end the stigma that still surrounds it. From my understanding from my research and what I have read online such celebrations aim to promote disability as a natural part of human diversity. It is to turn shame into pride by redefining what it means to live with a disability.

Am I Disabled Though?

Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person. And despite the continued experience of chronic pain, spasticity, visual disturbances, and severe weakness in the legs, I still didn’t see myself as a person with a disability.

"Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person." Share on X

I felt that there was a mismatch between my conceptions of disability and what it looked like and my experiences of living with FND. I felt that I didn’t fit into society’s notions of what disability is, but still was experiencing severe and debilitating symptoms. But am I disabled? Photo by Anthony Tran on Unsplash

The stereotypical view of disability is that of someone missing a limb, or someone needing the use of a wheelchair one hundred per cent of the time. The extent of the struggles associated with a disability easily seen and identifiable. Such definitions failed to embrace my circumstance and experience of living with FND. I still had full use of all my limbs, and only occasionally needed the use of a mobility aid. There were times when FND did not disable me significantly and managed quite well independently. There was a mismatch between my conceptions of disability and my own experiences of living with FND. And as a result, I failed to recognise disability as being part of my life with the diagnosis of a long-term neurological disorder.

A Person With A Disability I Was Now Becoming

But as I worsened and the need for a mobility aid became permanent, and a wheelchair became a fixture in my life; a person with a disability became something I now was.

It was hard enough to accept and assimilate a new identity of that of someone with a long-standing neurological disorder. Talking about my condition is such a monumental struggle; at the beginning, I didn’t fully understand it myself, so how could I talk about it with others? With the diagnosis, I could no longer deny that there was nothing wrong. It suddenly became real that I was dealing with a long-term condition and would be doing so for the rest of my life. I had to wave goodbye to me that existed pre-illness, and the hopes and dreams that I once held. Accepting the new identity also meant accepting the end of normality.

The increased severity of symptoms such as the trembling in the legs forced me to confront the reality of being disabled

Disabled was an even more difficult identity to welcome. It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me.

"It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me." Share on X

The Narrative Surrounding Disability

The narrative surrounding disability is that it is less than desirable. For some, disability is possibly one of the worst things that can happen to a person; believing that it is a fate worse than death. A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than; and used as a source of pity or inspiration.

The media portrays those with disability as either weak and in need of pity and compassion or used as inspiration, being labelled as ‘superhuman’ as in the case of Paralympic athletes.

In the media, stories regarding disability and disabled people are either used to elicit sympathy and compassion or otherwise celebrating and applauding them when seemingly ‘overcoming’ their disability, designed to inspire such as in the case of Paralympic athletes. Remember the constant use of the term ‘superhuman’ when describing these athletes?

"A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than." Share on X

Is it surprising that those living with a chronic illness is apprehensive in succumbing to the disabled identity? And how can we learn to celebrate and be proud of such a label?

Confronted With The Reality of Being Disabled

I find myself always confronted with the disabled body I now inhabit. It is evident when trapped in bed as a result of my legs refusing to cooperate and function. My identity as someone with a disability is undeniable after collapsing on the floor after my legs have unexpectedly given way. My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness.

I am constantly being confronted with the identity of a person with a disability now symptoms associated with FND are persistent and overwhelmingly disabling. I am confronted with it on a daily basis after falls, accidents and a lack of ability to do many things I used to be able to do. Photo by **Sofia Garza** from **Pexels**.

"My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness." Share on X

When the invisible becomes visible, it is painful. It is so because of the curious and often judgemental stares from others, especially after a fall. The looks of people wondering what it is wrong, and hearing the whispers that suddenly stop when you happen to look over. Once, I happened to listen to a stranger accused me of faking after such an incident, which left me upset and humiliated.

How Can I Be Proud of The Weakest Part of Me?

Such occurrences leave me feeling broken, humiliated and weak. Even more so on the days in which I am unable to get back on my feet. My only choice of having to sit or lie where I have fallen leaves me feeling more exposed and vulnerable; my brokenness and the abnormality of my legs on display for everyone one to see. These negative feelings such episodes evoke as well as the negative stereotypes surrounding disability causes me to want to rid myself of the label. I am unable to take pride or celebrate that which makes me feel more of a burden. How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?

"How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?" Share on X

In the media, the disabled become celebrated for achieving even minor accomplishments. A disabled person getting out of the house or attending a party in the eyes of the non-disabled deserves fervent recognition. But I feel that I have achieved more worthy accomplishments than just getting out of the bed this morning or leaving the house – achievements like gaining a degree is surely more deserving of a celebratory parade.

What Disability Pride Is

Disability Pride, however, is not about liking your disability. Nor is it about pretending that difficult and painful aspects of living with one do not exist.

Disability Pride is a celebration of disability and the differences and uniqueness of those living with them. It is not living with shame for our disabled bodies or disability. Disability Pride sees the worth and value of those living with disabilities despite the challenges and limitations that it entails. Photo by **Ylanite Koppens** from **Pexels**.

Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute and participate in the world, or that I take more than I give. An opinion that the UK often likes to reinforce in the articles regarding disability and the UK benefits system. Or that I have less inherent value or potential than the non-disabled person sitting next to me.

"Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute, or that I take more than I give." Share on X

Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it’s perfectly normal to be imperfect and have flaws. I am encouraged to love my body, wobbly legs, and wonky brain included.

"Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it's perfectly normal to be imperfect and have flaws." Share on X

Becoming Disabled Because of FND

Living with FND, and becoming disabled has forced me to encounter endless challenges, obstacles and adversity. The uncertainty I face every day of never knowing what my symptoms are going to do. And not knowing where and when my legs are next going to give way on me. Or not knowing what the future entails with regards to the illness and disability. There is tremendous adversity in not being able to go out alone and becoming heavily reliant on others to leave the house. Something that makes me feel like a massive burden on those closest to me.

As the symptoms of FND worsened; becoming more severe and disabling, the label of disabled is one that I had to learn to accept. Photo by **Ann H** from **Pexels**.

Since becoming disabled, I continuously come up against sadness, loneliness, and isolation. And at times, I have had to learn to advocate for myself and my needs. Such challenges have become so frequent they are a part of my life. I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless. One I wish I could change, but despite my best efforts, I have found I cannot.

"I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless." Share on X

The Unexpected Gifts of Disability

Despite the challenges that disability continuously provokes, it has also given me unique gifts. Perhaps these gifts were more thrust upon me, and my circumstances forced me to hone them over time.

Life with FND and disability has given me resilience. Despite the endless hurdles and setbacks, I find myself able to get back up, dust myself off, and try again. This ability continues to surprise me as I do and achieve things I never imagined I could. Despite disability and its forced limitations, I can be proud of what I have attained.

"Despite the endless hurdles and setbacks, I find myself able to get back up and dust myself off. This ability continues to surprise me as I do and achieve things I never imagined I could." Share on X

It has taught me compassion and the importance of understanding the pain that others withstand. Perhaps without my disability, I would not have otherwise had the chance to develop my writing, something which continues to give me purpose.

Us all need to recognise the gifts that disability can present to turn the shame to pride. Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than. A notion that not only diminishes ourselves but others also living with disabilities. Once more, it continues to reinforce negative attitudes of disability and those living with them.

"Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than." Share on X

Disability Pride Changing How I See My Disabled Self

Yes, I acknowledge that because of disability, I have lost so much. I have lost the normal function of my body, my independence and my confidence as examples. But Disability Pride encourages me not to dwell on these but to recognise and celebrate that which I can still do, and the accomplishments earned despite the adversity created by FND that is a massive part of my life.

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Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate.

"Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate." Share on X

In Chronic Illness

A Not So Very Normal Life

May 28, 2020 2 Comments

In my recent to-be-read pile, two books jumped out at me. One called ‘Normal People‘ by Sally Rooney. The other was ‘Very Nearly Normal‘ by Hannah Sunderland.

As I noticed them, I began to ruminate over the word ‘normal.’

Normal, defined as “conforming to a standard, usual, typical, or expected.”

It is a word that the majority of us aspire to be; to fit in with whichever peer group we wish to be a part of, and accepted. However, for many, it is not a word that they feel applies to them, or which they can relate.

As a consequence of living with a neurological disorder from a very young age, with strange and unusual symptoms, normal is not something I ever felt I am or a word that resonated with me.

In truth, ‘normal; isn’t a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life. But even before then, I often felt that I didn’t quite fit in, or that I wasn’t normal. I never seemed to like the same things other kids my age were into and always seemed to be much more introverted than others my age.

"In truth, 'normal; isn't a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life." Share on X

Perhaps, it was just part of ordinary childhood; I don’t know. But what I do know that these feelings never went away, and becoming a constant theme in my life.

Beginning To Live A Not So Very Normal Life

Even what I thought was normal, such as the trembling and general feeling of weakness in the legs. Having experienced such sensations from such a young age, I naively assumed that everyone lived with such sensations.

But when diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew. And as we are unable to leave, we begin to build a home and a life on this alien planet. Slowly it becomes our new normal, and a home that no longer feels alien.

"When diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew." Share on X

And when living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal. Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms.

"When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Slowly becoming the new normal." Share on X "It becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms." Share on X

Always Foreseeing The Unnormality Of This Chronic Life

I have always foreseen, and currently envisioning the un-normality of a life living with a chronic illness. It is evident by observing everybody else around me, living life without the difficulties I continually face. Their existence not blighted by cruel, relentless, and debilitating symptoms, unlike that of mine.

girl crying while touching glass window — Staring out the window and watching people busily walking and carrying out errands often makes me wonder how they can do so, without feeling the ill effects that I do such as pain, dizziness, or fatigue? For me, it seems so abnormal but in fact the norm for so many.

Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out in vast, open spaces without the feeling of intense dizziness suddenly overwhelming them. Or being out alone without the worry of legs suddenly giving out from under you, leaving them in a heap on the fall, unable to get up, and left humiliated by a body that is failing them.

"Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out without the feeling of intense dizziness suddenly overwhelming them." Share on X

I find myself plagued by such thoughts as I am unable to remember I time when I didn’t experience such symptoms. These symptoms have become such a part of my everyday life, that it has become my personal normal. Now, if such symptoms suddenly disappeared, it would feel abnormal.

Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar. On those rare good days, with no or very few symptoms, they can feel strange and bizarre, almost like trying on a wrong size pair of shoes.

"Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar." Share on X

An Upbringing of Symptoms and Unusuality

Do you remember the days of childhood? Those blissful happy, carefree days where it felt that you had no worries, or obstacles blocking your way forward. When experiencing strange and debilitating symptoms from a young age, they had a part in our upbringing alongside our parents and other close family members.

The promise of care-free childhood usually promises a time free of limitations, a time of freedom, and fitting-in. But when living with symptoms, even when you are unaware of its origins, you become only too aware of the limitations of your body. And the fragility of life. The promises of childhood snatched away, becoming no stranger to what makes you different.

It often feels that the symptoms I experience as a result of FND was much a part of my upbringing as anything else. Perhaps the problems I experience with my legs was a big reason for my love of reading as I was not able to enjoy more physically challenging hobbies.

No longer do you fit-in, fixated on the parts of the body that is different from the person standing next to you. Or all too conscious of what is happening inside of you, that which only you can apperceive. Once you felt normal, but no longer is it the truth.

"No longer do you fit-in, fixated on the parts of the body that is different. Or all too conscious of what is happening inside of you, that which only you can apperceive. Once you felt normal, but no longer is it the truth." Share on X

Illness now claimed you as its reluctant victim, and as such, so too has weirdness; of not being normal.

Panicking Over Every New Twinge; Every Strange New Sensation

I cannot remember the time when every new twinge or unfamiliar sensation did invoke a fresh wave of panic. In my ‘normal’ days, the days before this illness became such a permanent and constant presence in my life, it was easy to brush off a twinge, or unfamiliar sensation as something benign and not a cause for concern.

Now, when met with such circumstances, more often than not, it is welcomed by panic and overwhelming anxiety. A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong, a new diagnosis for the medical profession to ascertain.

"A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong." Share on X

It consistently evokes the question of whether such misgivings are a warning of an imminent flare. Or worse, the start of a deterioration in our conditions.

Accessing? When Amid Chronic Illness The World Can Become Inaccessible

In the land of normality, the world truly is your oyster. It is fully accessible, and the only decision is how to utilise such freedom.

When becoming chronically ill, and limited by the effects of severe and debilitating symptoms, doors begin to slam in your face. The world is slowly becoming inaccessible, and smaller in its choices available to you.

black and white photo of woman staring out of a window — When living with chronic illness and disability, the effects of such can often make the world feel inaccessible to you; your world and life becoming smaller.

The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain. And the company of several other loathsome symptoms.

"The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain." Share on X

The internal battle between you and the door offering freedom can become a daily routine. A face-off with a door may seem ridiculous but when you’ve tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, or experience dizziness so intense that the world feels unsafe, leaving the house can be terrifying.

"A face-off with a door may seem ridiculous but when you've tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, leaving the house can be terrifying." Share on X

Public transport becoming inaccessible also, due to the unavailability of seats. Because of severe weakness and disabling pain, standing for an unknown period of time becomes untenable, and as such insurmountable.

Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you.

"Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you." Share on X

A person with a chronic illness or disability becoming a square peg trying to fit themselves inside a round hole.

Soothing Myself By Changing The Self-Talk

In a normal, ordinary world, I feel anything but, however. I feel different, peculiar, not normal. My ears are often ringing with the sounds of the names directed at me, freak, for example.

The neurological disorder and the symptoms that invariably accompany it sets me apart from everyone else. It’s a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others.

"FND and the symptoms that invariably accompany it sets me apart from everyone else. It's a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others." Share on X

But in an attempt to soothe myself from its effects, I often ask myself the question “What is normal?”

Because the truth is normal does not exist; it is subjective. For one person, something may be entirely normal but not so for a different individual.

What is normal is also contingent upon a diverse range of factors such as location or time. What is normal in one part of the world, for example, would be considered strange or abnormal in another. And something deemed to be normal in the Middle Ages, would not be so in today’s modern society.

So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that’s OK because your normal may just sound just as strange to me.

"So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that's OK because your normal may just sound just as strange to me." Share on X

The above post is part of the May Link-Up Party with A Chronic Voice. The aim of it is for bloggers and writers to share their stories and experiences of living with chronic illness through given prompts.

In Awards

Disability Blogger Award (x2!)

April 26, 2019 5 Comments

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

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:

Jen from Tripping Through Treacle
Robert from A 30 Minute Life
Jordyn from The Chronically Unimaginable
Charlotte from FND and Me
Claire from Through The Fibro Fog
Elin from My Blurred World
Emma from Not Just Tired
Lynley from Top Lady Talks
Rachel from What a Pain
Alison from Thriving While Disabled

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:

If you had to write about something other than disability/chronic illness/mental illness or special needs, what would it be and why?
If you could travel anywhere in the world, where would it be and why?
What is the biggest thing you’ve learned about yourself since becoming disabled or chronically ill?
What is your favourite comfort food?
Name a literary character you can relate. What is it about this character that you can relate?
If you had to recommend one place to visit near to where you live, what would it be and why?
What is your favourite TV show to binge-watch when you are having a bad day?
What is the one blog post you are most proud of and why?
If you could recommend one blogger or blog to read, which would it be and why?
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!

In Chronic Illness

Exploring The World of Harry Potter

December 4, 2018 2 Comments

Becoming Spellbound by Magic

I think everyone has a favourite film or series of films from their childhood. For me, these have always been the Harry Potter films. Despite even being 15 when the first film came out.

I fell instantly in love with the words, and how J.K Rowling transported you into an entirely different world. I was already beginning to feel different from on account of my symptoms when the first film was released. It was a time of loneliness and isolation as the so-called friends slowly ostracised me. And my home became a place where I spent most of my spare time: the books and films of Harry Potter provided me with an escape, one in which I could inhabit a world of magic. They were a welcome escape from the often frightening symptoms as well as the loneliness that plagued my life.

I resonated with Harry’s struggles with loneliness and isolation as he lived at 4 Privet Drive. But, it also gave me hope. A hope that like Harry, I would eventually find a place of belonging.

Whether you come back by page or by the big screen, Hogwarts will always be there to welcome you home.
– J.K. Rowlin

As a Harry Potter fan, a visit to the Warner Bros. Studio Tour in London has been on my list of things to do for quite some time.

Experiencing Hogwarts

Living with this neurological disorder affects my perception of the world. For example, high ceilings worsen the dizziness I already experience. Or can even trigger an episode of vertigo. As such, it can be overwhelming anxiety-producing going to large places such as this, knowing it can provoke unpleasant symptoms. However, I decided to defy the fear and anxiety and booked a trip to the Harry Potter Studio Tour. I no longer wanted my symptoms to dictate my life and wanted to experience the magic of Hogwarts for myself.

So on a cold day in late October, we arrived at the magical destination and a mecca for all Harry Potter fans! We headed to the entrance where there were large wizard chess pieces. You may remember these from Harry Potter and the Philosopher’s Stone. And then we were on our way in (after a swift security check!)

There is an option to hire a digital guide. In other words, an audio guided tour of the exhibition. It gives you an extra insight into the film-making process, as well as exciting trivia about these well-loved films. In the end, I declined, fearing it would worsen the dizziness and vertigo.

The Studio Tour

The Studio recommends that you arrive 20 minutes before the allocated time on the ticket. This time, gives you the chance to peruse the public area. This area contains a cafe, bathrooms, and an extensive shop of Harry Potter merchandise! After a short look around, Mum and I descended on the Studio Doors and waited in line for the tour to begin…

Before the tour officially starts, a short film plays about the studio and the making of Harry Potter featuring some very familiar faces. Then as the doors open, the Great Hall appears in front of us, welcoming us into the world of Hogwarts and Harry Potter. As we went the day before Halloween, there was a dark and spooky theme throughout the tour. The Great Hall had pumpkins strewn up, for example and Death Eaters cropped up every now and then!

The Great Hall was the only part of the tour that the group was accompanied by a tour guide. As such it was when it felt the most crowded. After a brief talk, we were left to explore the rest of the studio on our own. There is still a set route to follow, however, but there is plenty of space, and everyone went off in different directions to see what was of most interest to them.

I found the Great Hall and the adjoining room where a lot of the sets, such as Dumbledore’s office and the Gryffindor Common room was overwhelming. It was not only the crowds that was burdensome, but also the lights and all of the sets to see. The dizziness and vertigo, at times, did become too much, but there are so many benches and places to sit during the tour it’s easy to relax and take a break when you need one.

I loved the Forbidden Forest, however, with the darkness and the sounds it was incredibly atmospheric. The sounds of the forest’s various creatures and wolves howling, it felt you were walking through a real forest which made it an immersive experience.

After coming out of the Forbidden Forest, you will find another gift shop, full of exclusive forest themed souvenirs. Another gift shop can also be found when arriving at Station 9¾ where you can even buy some Chocolate Frogs like Harry and friends do on the Hogwarts Express!

Thoughts on The Tour

The studio tour is incredible, and the attention to detail is awe-inspiring and makes you appreciate the hard work and talent of all those who work behind the scenes of these magical and captivating films.

The tour highlights the stunning costumes, enchanting sets and thousands of spectacular props set amongst two sound stages and a backlot. All of what you see seem so familiar. The tour includes everything you’d ever want to see from the Harry Potter films, which includes:

Hogwarts
Forbidden Forest
Hogwarts Express
4 Privet Drive
Hogwarts Bridge
Knight Bus
Costumes
And more!

After visiting the Backlot in which you will find the Knight Bus and 4 Privet Drive amongst others, you can find more about the special and visual effects. They provide information on how they brought to life the magic to the big screen. And also discussed the creative development of the magical creatures such as Buckbeak the Hippogriff and everybody’s favourite house elf, Dobby.

No Magic Needed for Accessibility

The accessibility of the Harry Potter Studio Tour was impressive. On arrival to collect tickets, there is a lower window for those in wheelchairs, like myself. There is also step-free access to the tour, which may not seem like much but is surprising how many popular attractions seem to forget such matters.

And the majority of the tour itself was fully accessible. The Great Hall and Diagon Alley was a challenge to navigate because of its slate floor and cobblestone street respectively. The only sets that were not accessible because they had steps were the Knight Bus and the Hogwarts Bridge. However, as they are both on the back lot, it is possible to take exterior photographs of them instead.

I was at first disappointed as I thought I would not be able to experience the thrill of being on the Hogwarts Express, but fortunately found that the last carriage on the iconic steam train is wheelchair accessible, and thus didn’t have to miss out!

I was most awestruck however by the incredible detailed model of Hogwarts, the last stop before leaving the tour. It was incredible, able to walk around the entirety and see every little detail of the castle and its surroundings. Definitely the highlight of the tour, in my opinion.

After we concluded the tour, we had time for a delicious bite to eat in the cafe located in the main foyer and a peruse of the shop. We then sadly had to say goodbye to the tour and get back on the bus to head back to South Wales.

I cannot recommend the Harry Potter Studio Tour highly enough, especially for those who are fans of the books, and films. It’s the most brilliant way to spend three and a half hours. The magic truly comes alive, casting its spell upon all that enters. There, I forgot about my worries, and troubles that were plaguing my mind. Unfortunately, the pain was severe and so not something I could forget, but during the hours I was there though I was not a girl with a neurological condition, but was just another Harry Potter fan.

Are you a Harry Potter fan? Have you made a visit to the Harry Potter Studio Tour? What was your favourite part?