Tag

FND

Browsing
Reliving Heartbreak: Life with a chronic illness
In Chronic Illness

Reliving Heartbreak: Life With A Chronic Illness

No Comments

“The true heartbreak of living with chronic illness is being forced to relive the worst moments of it over and over again”

I am an avid reader. I love nothing more than to sit and devour the latest bestsellers. Unfortunately, at times disabling symptoms that accompany chronic illness prevents me from doing so. Blurred vision, dizziness and intense, crippling pain all make reading near impossible. But still, I am grateful for the times I able to find pleasure in the pages of a good book. Recently, I have been able to find joy in reading once again. At the moment, I am seemingly choosing stories of love, romance, and heartbreak. Much of the books I have selected recently seem to revolve around heartbreak, much to my bewilderment.

Perhaps I gravitate towards such books because I resonated with their themes. These books resonated with me as I am no stranger to heartache. My heartbreak may not be the same as those I read about in the books stacked on my bedside table, but I do often experience it. My heartbreak comes not from a break-up or losing a job, or a fallout with a friend. No, instead, my heartbreak stems from living with chronic illness.

"My heartbreak may not be the same as those I read about in the books stacked on my bedside table, but I do often experience it. My heartbreak stems not from a break-up but from living with chronic illness." Click To Tweet

Heartbreak is often temporary. A brief, intense sadness in which we allow ourselves to wallow in self-pity, a tub of Ben and Jerry’s ice cream and the cheesiest romantic comedies. But when living with chronic illness, we are forced to relieve these moments of heartbreak over and over again.

Living with chronic illness is heartbreaking

Life with a chronic illness is reliving heartbreak over and over again.

"Life with a chronic illness is reliving heartbreak over and over again." Click To Tweet

The Heartbreak of Regularly Losing Your Freedom

It is heartbreaking knowing that this freedom from the worst symptoms accompanying chronic illness is only brief. As much as I enjoy a reprieve from the worst of my symptoms and enjoy the pleasure of reading and able to do what I want when I want, I know it won’t last. Soon, and sooner than I would choose, my entire existence will become besieged by crippling and disabling symptoms. And once again, I will find that I cannot participate in activities that bring me pleasure and joy, such as reading.

"Soon, and sooner than I would choose, my entire existence will become besieged by crippling and disabling symptoms. And once again, I will find that I cannot participate in activities that bring me pleasure such as reading." Click To Tweet

But freedom is something that I can never truly have. This illness has locked me inside a sort of prison, now trapped within a body that no longer feels like my own. Imprisoned by a deep sense of isolation, everyone around me cannot understand the pain that dominates my being.

The isolation worsened by physical isolation as this illness has continued to prise people from my life. Or it has been a decision made by so-called friends as they failed or didn’t want to understand my illness and the devastating effect it has on my life. Even worse has been the suspicion that people in my life to the validity of my condition. Especially people who know me well and should know that I would never lie or contemplate faking being unwell. When I should be out having fun and living my life to the fullest, it is heartbreaking to find myself with no social life and very few friends.

The Scariest and Longest Ride That Is Chronic Illness

Chronic illness is like the scariest rollercoaster ride; it’s one that I desperately want to get off but cannot. Just like experiencing a flare, you desperately want for it to end. Deep down, you know that it will eventually end, maybe not today, tomorrow, or even next week, but it will end. And when it does stop, you know the ride will soon start all over again.

It is especially heart-rendering, never knowing what caused this current flare or why it’s happening; it just is. And there is nothing that I or anyone else I or anyone I can do to stop it. Instead, I am a victim to it, forced to withstand it.

"It is especially heart-rendering, never knowing what caused this current flare or why it's happening; it just is. I am a victim to it, forced to withstand it." Click To Tweet

Every morning I wake, hoping things will be different. Each morning I hope that symptoms have miraculously eased during the time I spent asleep. And hoping that today the limitations will alleviate, allowing me some freedom from the constraints of FND. But every morning, I feel sad, heartbreakingly disappointed, and greatly disappointed that nothing has changed. Still, symptoms wreak havoc upon my body and limiting what I can do with my time.

As time rages on, so has the symptoms that affect me significantly every day. The hope that such symptoms will ease or retreat gradually dissipates. Decline not improvement seems to embody my experience of living with a chronic condition. The worsening of symptoms continually chips away at what I can do, eroding my self-confidence and identity. It’s heartbreaking to discover the remnants of what we used to be able to do, our identity, and our hopes and dreams in the rubble of our life before illness demolished it.

"It's heartbreaking to discover the remnants of what we used to be able to do, our identity, and our hopes and dreams in the rubble of our life before illness appeared and demolished it." Click To Tweet

The Heartbreak of Losing Your Body and Self to Pain and Illness

Now, my body or my life no longer seems to be my own. Instead, my body now belongs to the limitations forced upon me by symptoms that I cannot control and certainly cannot extinguish. My life now belongs to the opportunities I cannot accept because my body refuses to cooperate. My body forever tethered to the medications that allow me to function. Pills that I don’t want but need to survive the ferocity of the symptoms that are always present.

My body no longer feels like my own
"Now, my body or my life no longer seems to be my own. Instead, my body now belongs to the limitations forced upon me by symptoms that I cannot control and certainly cannot extinguish." Click To Tweet

It is heartbreaking when I realise that such good days, days where the symptoms are mild and manageable or even non-existent, are scarce. It breaks my heart that most of my days are ones filled with excruciating pain, never-ending fatigue, and weakness that refuses to cease.

Not being in pain seems so far removed from my reality that it feels like it only exists in fairy tales. Trying to remember the feeling of not being in pain or besieged by other debilitating symptoms is like trying to recall the feel of the warm sun on your skin during the cold, dark months of winter. It’s trying to remember the excitement of being on holiday when back home amid the mundane, everyday life.

Heartbreak and chronic illness
It is heartbreaking that every moment of my life is greatly affected by severe, debilitating symptoms. It is heart-rendering that I can no longer remember how it feels not to be in constant, excruciating pain, or even what it is to be healthy. Photo by Ivan Samkov from Pexels
"Not being in pain seems so far removed from my reality that it feels like it only exists in fairy tales. It is heartbreaking realising that I am no longer able to remember what it is not to be in pain." Click To Tweet

It is heart-rendering to realise that I can longer remember what it is to be healthy.

It is heartening being forced to relive the worst moments of living with a chronic illness

"And I do sometimes have great moments, beautiful days even. But still, I am in pain. And despite trying my best with doctors' appointments, different therapies and treatments, it still isn't enough." Click To Tweet

Every day, however, I try my best. I try my best to do what I can and not become consumed by thoughts of what I cannot. Every day, I try to paint a smile on my face and find joy in the small pleasures that bring me comfort. And I do sometimes have great moments, beautiful days even. But still, I am in pain. And despite trying my best with doctors’ appointments, different therapies and treatments, it still isn’t enough. Often they don’t work or fail to relieve the symptoms as much as we wish they could. It is heartbreaking that I still am forced to relive some of the worst moments of living with a chronic illness despite it all.

"It is heartbreaking that I still am forced to relive some of the worst moments of living with a chronic illness despite all my best efforts to remain positive and persevere with treatments." Click To Tweet

by
Keep Reading
Brave In The Face of Chronic Illness?
In Chronic Illness

Brave In The Face of Chronic Illness?

No Comments

Brave. A small but exceptionally awe-inspiring word. It is a word describing people who run toward danger when most would choose to run from it. Brave defines those who choose to defy their fears and anxieties and jump headfirst toward danger or risk. But I’ve noticed that it’s a frequent response to a disclosure of living with a chronic illness. I’ve often heard other people calling me brave when describing my experiences living with FND. Other times, however, I feel the judged stares from people around me as I stumble around with my crutch. But still, I do not welcome praise or feel flattered given the title of brave. Instead, it grates because I feel uncomfortable and undeserving of such a title. I do not feel brave in the face of chronic illness.

"But still, I do not welcome praise or feel flattered given the title of brave. Instead, it grates because I feel uncomfortable and undeserving of such a title. I do not feel brave in the face of chronic illness." Click To Tweet

Because for me, being brave is a choice. Being brave is choosing to venture toward danger, facing fears or doing something that would be daunting to most people. But I did not choose to live a chronic illness. I did not want my days defined by severe and debilitating symptoms. I did not want things that most people take for granted to be difficult because of crippling pain or legs that continually buckle and collapse. Nor did I wish for strange neurological symptoms making going anywhere with high ceilings near impossible because of the disabling symptoms it triggers. So how can I be brave for something that I had no control or choice but to endure?

"But I did not choose to live a chronic illness. I did not want my days defined by severe and debilitating symptoms. So how can I be brave for something that I had no control or choice but to endure?" Click To Tweet

Am I Brave In The Face of Chronic Illness

Unfortunately, it often feels that I am doing what I must to survive this illness and its accompanying baggage. I don’t think I deserve admiration for living with an illness that I did not ask for or want. I have to live with enduring debilitating symptoms because I have to; there is no other choice.

"I don't think I deserve admiration for living with an illness that I did not ask for or want. I have to live with enduring debilitating symptoms because I have to; there is no other choice." Click To Tweet

I do not feel brave.

When left writhing in agony because of excruciating pain, I do not feel brave. Nor do I feel brave when left in shock after my legs unexpectedly give way. Or when too weak to be able to get up off the floor. I feel anything but brave when forced to cancel plans because my body refuses to cooperate. And I certainly do not feel brave when fatigue is so relentless that I cannot get out of bed.

"When left writhing in agony because of excruciating pain, I do not feel brave. I feel anything but brave when forced to cancel plans because my body refuses to cooperate. I never feel brave." Click To Tweet

But there is an added pressure when others describe sick people, like me, as brave and inspiring. I feel like I have to put up a front, paint on a smile and pretend everything is fine. And also act that I can handle my illness with ease.

Behind Closed Doors, I Am Not Brave

But behind closed doors, I do not handle my illness well. There is a reason why you only see me on good days; because I only let you see me on those rare days. My worst days instead spent behind closed doors. Behind closed doors where no one can see my tears when the pain is more than I can bear. Or unable to venture out because my legs refuse to function, leaving me confined to my bed. The majority of the time, it feels that this illness has taken over my body and life. And it’s these times that are my weakest moments, times when I feel anything but brave.

"There is a reason why you only see me on good days; because I only let you see me on such days. My worst days instead spent behind closed doors. Behind doors where no one can see my tears when the pain is more than I can bear." Click To Tweet
I am not brave when behind closed doors, where I writhe in agonising pain, crying just wanting relief. Or when left lying in bed while my refuses to cooperate, missing out on celebration and nights out.

There have been times where I have ‘overcome’ the limitations related to my illness and done that which the symptoms make it very difficult to accomplish. Times where I have pushed through dizziness, visual disturbances and nausea to enter a building with a high ceiling despite triggering severe and disabling symptoms. The times in which I have risen straight back up after suffering a fall. Or times in which I pushed past the pain and fatigue and did that which I previously thought impossible. These instances were perhaps my bravest times, yet still, I don’t feel brave in the face of chronic illness.

I don’t feel brave because these instances remind me that I am not like everyone else. Whenever severe and debilitating symptoms become triggered by being somewhere with a high ceiling is another reminder that I am different. And being different only makes me feel abnormal, a freak. As much as my life and my experiences are different, it still is my life. I’m not brave for just living my life, am I?

"I don't feel brave when conquering disabling symptoms. The presence of them only reminds me that I am not like everyone else. Whenever severe and debilitating symptoms become triggered, it is another reminder that I am different." Click To Tweet

Bravery: The Absence of Fear?

When I think of courage and bravery, I think of the absence of fear. But, unfortunately, my life with chronic illness consists of a great many fears. I often fear the future; the worry that my symptoms will worsen even more is never far from my mind. Even on my rare good days, days in which symptoms are mild, there is always the fear that they will suddenly resurface or worsen. Or the fear that my legs will suddenly collapse is a substantial one because it is such a regular occurrence. So, if courage and bravery is an absence of fear, I cannot be brave, can I?

"When I think of courage and bravery, I think of the absence of fear. But, unfortunately, my life with chronic illness consists of a great many fears. So, if courage and bravery is an absence of fear, I cannot be brave, can I?" Click To Tweet

I recently came across a quote from Bear Grylls. In it, he said, “Being brave isn’t the absence of fear. Being brave is having that fear but finding a way through it.” So perhaps, I am brave after all. It is true that despite all my fears I find a way through them to do what scares me anyway. Despite my fear of my legs giving way, still, I go out and do what I enjoy even if my legs do happen to relent. And despite the intense feelings of discomfort I feel due to the severity of my symptoms, still, I stay instead of fleeing and escaping the situation as my head wants me to.

I may feel anything but brave or strong. But others seem to see such qualities in me, so why am I unable to recognise them in myself? But, still, I want others to recognise bravery within me for something I have chosen to do rather than for living my life.

"I may feel anything but brave. But others seem to see it in me, so why am I unable to recognise it in myself? But, still, I want others to recognise bravery for something I have chosen to do rather than for living my life." Click To Tweet
by
Keep Reading
Mobility Aids: Signpost For Something Is Wrong
In Chronic Illness

Mobility Aid: Signpost For Something Is Wrong

1 Comment

Before leaving the house and my coat and bag, I also grab my crutch with some apprehension. A crutch that has become like an ally. One that helps me keep my balance and keep me upright when my legs threaten to give out. And when symptoms are at their worst, and everything feels like a battle, this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains and saving the world. No, it is a mobility aid that enables me to function in the outside world.

"When symptoms are severe, everything feels like a battle; this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains. Instead, it is an aid that enables me to function in the outside world." Click To Tweet

But the truth is that I felt and sometimes still feel embarrassed and insecure about needing and using a crutch. Unlike superheroes whose props make them appear strong and powerful, my prop, however, makes me appear sick and weak. My need for such an aid makes me feel ashamed, embarrassed and insecure. The sight of it made me feel scared about my body and my future. And using it often makes me feel vulnerable.

"But unlike superheroes whose objects make them appear strong and powerful, my crutch, however, makes me appear sick and weak. And my need for such an aid makes me feel ashamed, embarrassed and insecure." Click To Tweet

Using it makes me yearn for the years when my illness remained invisible. I miss being able to look in a mirror and forget I was sick, even just for a second. And I especially miss being able to venture out in the world, disguising myself as being like everyone else.

Using the crutch, however, shatters such an illusion. Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was. So I consider it a symbol of my impairment: a very visible one. But one which I desperately want to remain hidden. 

"Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was." Click To Tweet

Using A Crutch Made People Notice Me; But Not In A Way I Want To Be Noticed

I was worried that by using it, people would pity me or ask me personal questions. Worried that some people would see the crutch, and only the crutch and not the person behind it.

I was also afraid that a crutch would make me look unfashionable. Accessorising my outfits with jewellery or a scarf, for example, is something I enjoy, but this was one accessory that I didn’t like or want. Instead, I saw it as something that made me stand out, look different from everyone else. Just not how I would like others to notice me.

"Accessorising my outfits is something I enjoy, but this was one accessory that I didn't want. Instead, I saw it as something that made me stand out. Just not how I would like others to notice me." Click To Tweet

Suddenly the girl staring back at me is no longer recognisable from the one before. No longer is my own body represented in the images shown in glossy magazines, on television or even on film. There are no stylish role models providing examples of how to make a crutch look cool. The lack of representation of mobility aids in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged.

Looking through my photographs, I notice that not many include me with my crutch.  Whenever, I see a camera my first instinct is to hide it, hide the evidence of my sickness and disability.
"There are no role models providing examples of how to make a crutch look cool. The lack of representation in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged." Click To Tweet

When we see people using mobility aids in the media, it is usually of older people. However, needing and using one myself often makes me feel old before my time. And I often worry about the judgements of others; people assuming that I’m too young to be needing one, and therefore must be faking. Feeling the constant stares and scrutiny when out only seem to confirm such fears.

Mobility Aid: Disability on Display

I am hyper-aware of the people around me. I can feel people’s gazes on me as they look me up and down as if trying to identify my affliction. Just recently, as I sat waiting for a pedicure at a local salon, I noticed a woman staring at me. It made me feel like I and my disability were on display for everyone to see and scrutinise. Sometimes people even approach me asking, “Oh no, your poor thing, what happened to you?” It’s as if people believe that I am using the crutch due to an injury, expecting a funny anecdote on how it happened. But instead, the need for such an item is because of a long-standing neurological condition and one that requires other mobility aids than just my crutch.

"I feel people's gazes on me as they look me up and down as if trying to identify my affliction. It often makes me feel like I and my disability were on display for everyone to see and scrutinise." Click To Tweet

I have not yet found a way to reply to such a question without making others feel awkward. When I reply and tell them the truth regarding my neurological condition, there is a deathly silence, not knowing how to respond. And I feel uncomfortable, as there are times when I don’t want to share details about my disability. Sometimes, I want to forget that it exists, even if my symptoms never let me forget it.

For somebody who was more non-disabled than I am now, introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls or from the evidence they leave behind. Every new bruise or cut is a stark reminder of the deterioration of both my mobility and balance.

"Introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls." Click To Tweet

Such deteriorations feel like a personal failure like I haven’t tried hard enough to get better. And my newfound dependence on a crutch, so too, felt like a personal failure. I thought that a future of using a mobility aid permanently was giving in to my condition and giving up. It felt that I was saying goodbye to the person I once was and the life I lead and opening the door to something new and unsettling.

A Newfound Dependence on A Mobility Aid: A Personal Failure?

Society perpetuates the idea that a strong and healthy body is the ideal. And as a result, disability and illness are seen as weakness, as something lesser than. My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I internalised everything society has taught me and thought that using a crutch and other mobility aids made me weak.

"My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I thought that using a crutch and other mobility aids made me weak." Click To Tweet

What My Crutch Has Given Me

What I don’t often consider, however, is the positives that using mobility aids have brought into my life. For example, my crutch has meant that I no longer have to rely on the support of another person to help keep my balance. My crutch gives me much more stability, allowing me to help maintain my balance and stopping me from toppling over.

Using a crutch might make me insecure at times, but using it has made going out much less of a hassle and without the worry of falling over or losing my balance. Image by Karolina Grabowska from Pixabay.

It has saved me the red-faced embarrassment of being left face down on the ground plenty of times by now. When your disability is invisible, people constantly question your need for things such as use for an accessible toilet or a blue badge, for example. Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. It sometimes feels like a huge weight has lifted when I no longer have to prove my disability and illness.

"Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. No longer have to prove my disability and illness." Click To Tweet

Overall, though, my crutch has gone from something that brought me shame and uncertainty to something that has enabled me to live more of a life than I did before. And by accepting and embracing my crutch, I am by extension accepting and embracing myself.

When I go out, the first thing I grab is my bright pink and very cool crutch. No hesitations.

Mobility Aids: Signpost For Something Is Wrong
by
Keep Reading
Sometimes, I Don't Want To Talk About It
In Chronic Illness

Sometimes, I Don’t Want To Talk About It

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." Click To Tweet
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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet
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." Click To Tweet

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." Click To Tweet
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." Click To Tweet

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." Click To Tweet

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.

by
Keep Reading
Anxiety Through The Prism of Chronic Illness
In Chronic Illness

Anxiety; Through The Prism of Chronic Illness

1 Comment

Anxiety, like an unwanted stalker, has followed me for as long as I can remember.

Moments of panic and worry punctuated my life. Anxious thoughts overpowered my brain. All of which existed long before being diagnosed with a neurological disorder. Although the symptoms of which existed from a very young age, they became more pronounced as I grew up. However, doctors could find no cause to explain such symptoms. The anxiety that had always been a part of my life became a source of blame for my symptoms.

After many years of searching for answers, and many more doctors’ visits and hospital appointments, I finally had answers. I had a diagnosis and a physical explanation for my symptoms.

Often when doctors can find no organic cause for the symptoms a patient is enduring, anxiety is blamed -photo by Suzy Hazelwood from Pexels.

The anxiety that had long pursued me was, in fact, a symptom of a neurological disorder and not the cause of it as doctors had long suspected. You would expect that finally having answers would lessen and quiet it, but instead, this diagnosis only became an amplifier for my existing anxiety.

It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Now I realise that anxiety is not a separate issue but has developed because of a chronic illness.

"It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Anxiety is not a separate issue but has developed because of chronic illness." Click To Tweet

Anxiety: Another Symptom of Living With Chronic Illness

On reflection, the sudden appearance of intense, mysterious symptoms triggered the fear and panic that often paralysed me, stopping me in my tracks. When I understood the symptoms and why they were occurring, it no longer elicited the same terror that they used to. The anxiety was still an issue, but I could now categorise it as another symptom of living with a chronic illness.

Every new twinge or pain causes a wave of anxiety as I worry what it means for me and my future.

There is still much of my condition that is shrouded in mystery. And it’s this unknown, the uncertainty that incites much anxiety in my life. With every new pain, or spasm, or symptom, an alarm bell begins to sound. I question whether such a sensation is normal, something related to my condition, or something else entirely. I worry as I try to work out if I should be worried.

"There is still much of my condition that is shrouded in mystery. And it's this unknown, the uncertainty that incites much anxiety in my life." Click To Tweet

Becoming Hypersensitive and Overly Vigilant of Your Body and Health

When symptoms have gone on for so long, you can no longer remember how it feels to reside inside a ‘normal’ and fully functioning body. As a result, you aren’t always able to trust your perception regarding your body and subsequent health. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be.

"You aren't always able to trust your perception regarding your body. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be." Click To Tweet

The unpredictability and lack of control over such relentless symptoms often mean that you can never really be prepared for when they are suddenly going to appear.

I usually spend energy, perhaps more energy than I can spare worrying on what people think of me, or whether I will be able to walk or get out of bed each new morning when I wake. Before I’ve begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead. Thoughts fly through my head, such as “If I do this today, will it aggravate and worsen the symptoms?”

"Before I've begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead." Click To Tweet
Every day I worry that anything I do will somehow trigger or worsen symptoms.

On rare occasions, when mornings are uneventful, and symptoms are not present, there is a moment of joy. I imagine what can be done with this day of relative freedom from the confines of illness. However, this moment of ecstasy proves to be fleeting as once again, anxiety resurfaces. Thoughts such as “I might be feeling well, but I know that it won’t last for long” run through my mind. Anxious that at any moment, the symptoms will suddenly reemerge spoiling the day. There is also the worry of doing anything that may trigger the symptoms or worsen them.

Anxious When Leaving The House Alongside Physical Symptoms

In my experience, the unpleasant and relentless symptoms are difficult enough to live with and manage inside the safety of home. Symptoms can often be unpredictable and severe with nothing to do but to endure them. But symptoms can be much more challenging to control or predict when outside the house with all the outside world’s distractions. And as such, anxiety can often rear its head when needing to venture out into the outside world. The fear that the symptoms will suddenly appear ruining plans and our fun. Or when they do occur, we will be unable to manage or control them, thus leaving them to become out of control.

When living with a neurological condition, there can be constant anxiety of suffering a fall and left unable to get back up. Photo by Daria Shevtsova from Pexels

The most severe symptom that I have to contend with is the weakness and trembling in my legs.

Such symptoms can result in them giving way, without warning and leaving me lying in a heap on the floor. Such occurrences can be frightening even when at home. Leaving the house can be daunting. Images of my legs suddenly collapsing, leaving me lying in the middle of a road flash through my mind, or falling over and not being able to get back up. Flashbacks of the times such incidents have also haunted my thoughts, leaving a heavy pit of worry deep in the bottom my stomach

‘Anxious because I am unable to trust my own body’

A lot of the anxiety I experience is a result of not being able to trust my body. Every day it’s hit or miss whether my body will hold out. I don’t trust that my legs will allow me to walk. I don’t trust that I won’t get dizzy and need to hold onto something to steady myself. As a result of these severe, debilitating symptoms, I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also.

"A lot of the anxiety I experience is a result of not being able to trust my body. Every day it's hit or miss whether my body will hold out. I don't trust that my legs will allow me to walk. I don't trust that I won't get dizzy." Click To Tweet
"I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also." Click To Tweet

The many what-ifs surrounding my illness and all the uncertainty it creates means that my thoughts are continually racing. My mind needs to be frequently distracted; otherwise, I can spiral into panic. It is easy to find distractions at home. I practice mindfulness or play fun word games or complete jigsaw puzzles. I read or exercise to keep my mind and body as healthy as possible. But once I am out, the things I can do to distract myself are limited, so anxiety skyrockets. I become more vigilant of every sensation and symptom that is occurring within my body. The trembling in my legs heightens to the point that it feels they will collapse at any second.

Being At The Mercy of Both Anxiety and Chronic Illness

When living with anxiety and chronic illness, you are at the mercy of both. When there is a flare in either the symptoms of chronic illness or anxiety, the other will follow. Or when anxious, the already present symptoms will almost certainly worsen. When experiencing a severe, debilitating, crippling flare anxiety will also. Juggling anxiety on top of illness isn’t impossible but continually proves to be a frustrating and time-consuming challenge to master.

Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness. Anxiety is not a separate issue from living with a chronic illness but often develops because of it.

"Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness." Click To Tweet

If living with a chronic illness was a battle, then it is one that I am unable to win. The skills such as mindfulness and breathing exercise have proven to be useful in lessening the anxiety but have had no effect on the physical symptoms I endure. But perhaps the anxiety that accompanies it is one that I can defeat.

Anxiety Through The Prism of Chronic Illness
by
Keep Reading
Pin It