spoonie life Archives – Page 2 of 4

In Chronic Illness

Hiding Behind a Mask

February 27, 2019 4 Comments

Waking After a Night of Painsomnia

This morning, I awoke with a start as the alarm started to blare signalling the beginning of a new day. Except, that my day started many hours before. When the bell began to sound, however, I had only managed to grab a couple of hours sleep.

Why? Because of painsomnia.

How living with painsomnia feels when it leaves you with an inability to sleep!

Painsomnia is the lack of sleep or inability to obtain sufficient sleep because of physical suffering, like chronic pain. And when living with permanent chronic pain, painsomnia becomes just another symptom of living with a neurological condition.

"Painsomnia is a lack of sleep or inability to obtain sufficient sleep because of pain…it's another symptom of living with a chronic illness." Share on X

The ‘Sick’ Appearance Staring Back At Me

Stumbling to the bathroom due to stubborn and uncooperative legs, I take a look in the mirror. The first thing I notice as I study my appearance is the dark circles and bloodshot eyes. These, a visible reminder of the crippling pain and the subsequent lack of sleep. Neurological disorders, such as the one I live with is classed as being invisible, a condition that is not readily visible to others. As I looked hard at my ashen complexion and the dark circles under my eyes, I realised that I looked sick. It appears that sometimes our conditions are not as invisible as the term suggests.

"I realised that morning I looked sick…our conditions are not as invisible as the term suggests." Share on X

pink flowers make-up bag with benefit brightening and airbrush concealer with hand mirror sitting in front of it — Make-up such as concealer (my current favourite being the Benefit Brightening Concealer which works miracles on my worst days!) allows us to wear a mask of disguise when feeling the effects of chronic illness. What products do you love to use to create your mask?

A Sick Day?

If I had the luxury of staying at home, then I would have afforded myself a duvet day. A duvet day to allow me the opportunity to provide care for myself. To partake in those behaviours that make me feel better. However, today happens to be one of the two days I am out with my carer. And although I could have cancelled, I had errands that needed fulfilling.

So what could I do?

Well, after battling with my legs to be able to shower and accrued enough energy to get dressed, I grabbed my make-up bag. I snatched my favourite and ever faithful concealer, dabbing it under my eyes to hide and obscure those stubborn bags. I apply a little foundation and blusher to give me some colour, and so I don’t look like an extra from The Walking Dead.

Hiding Behind A Mask

The make-up I apply allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can pretend that I am well. A persona whereby I can inhabit a world of being well. A world in which I am not in constant pain.

"Make-up allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can inhabit a world of being well." Share on X

image of freddie mercury with lyrics from 'the show must go on' written underneath — Lyrics from the amazing ‘The Show Must Go On’ by Queen. One of my all-time favourite songs and lyrics which I am able to relate to when experiencing a bad flare day!

But we don’t put on a mask purely for vanity reasons. We also assume a different persona in consideration for those around us. We put on a brave face, hiding pain and the effects of other symptoms to alleviate the worry and burden on those closest to us. When out in the world, conversing with those we don’t know or don’t know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike.

"When out in the world, conversing with those we don't know or don't know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike." Share on X

There is always a worry that we focus too much on our illness and its symptoms. A concern that others may think we sound like a broken record complaining about pain and everything else that accompanies illness. Therefore, the most natural path to avoid this is to mask the pain and discomfort that coexists with our ailments. There is also something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy. There is a word for those who hide their pain behind a smile; this is ‘eccedentesiast’. And those of us living with chronic pain and illness we become masters at this.

woman holding a clear glass jar in the shape of a head in front of them — Living with chronic illness and chronic pain we become masters of disguise; hiding behind a mask to disguise the effects they have.

"There is something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy." Share on X

The Need of a Mask to Hide Pain and Illness

Pain and chronic illness are a permanent fixture in our lives, however, and as such wearing a facade is challenging to maintain day after day. But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior.

"But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior." Share on X

If you look closely, you can see the pain etched on my face by the grimace that appears. By the fake smile that I give which doesn’t reach my eyes. The dullness that is apparent in my eyes; the lack of sparkle or brightness that is recognisable when pain isn’t present.

Sometimes Hiding Behind A Mask Doesn’t Work As It Begins to Slip

When our masks slip, and the pain and the emotional effects of illness are exposed, it can make us feel vulnerable. We fear the judgement of others; worry that they will misunderstand the tears as a sign of depression. Or we are insecurely waiting for those well-meaning comments regarding the need to remain positive in the wake of something they will never understand. Worry that will others see those tears and other visible indicators of pain and illness as a sign of weakness. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness.

"When our masks slip, it can make us feel vulnerable. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness." Share on X

a person holding a red piece of card in front of their face with a frowning face — Sometimes hiding behind a mask doesn’t work as masks slip and the pain and other emotional effects of living with symptoms of a chronic illness are revealed to others, making us feel vulnerable and judged.

Living with a chronic illness, we often already spend a lot of time at home. It in itself can become uncomfortable; itching to want to break free from the confinement and explore the world. But, our homes are often a sanctuary, the one place we feel comfortable to discard the mask and show our truth.

So let us not be ashamed or made to feel weak because of the masks we wear. Let us not feel weak or vulnerable when they slip off to reveal the reality of pain and illness waiting underneath the facade. It is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future.

"Wearing a mask is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future." Share on X

Hiding behind a mask is not a sign of weakness but rather an act of self-preservation.

"When living with a chronic illness hiding behind a mask is not a sign of weakness but rather an act of self-preservation." Share on X

Hiding Behind A Mask Cover Image - decorated mask looking in a mirror

In Chronic Pain

Seeking Joy in The Midst of Chronic Pain

February 2, 2019 7 Comments

If I were asked to sum up my current life in just one word, then there is only one word I could conjure which would adequately describe it. Pain.

From the moment I wake up, and until I (finally) fall asleep, all I can feel is the pain that assaults my body. The pain has become the bookends of my days. My entire life and existence becoming defined by its tight grip. It is all-encompassing. There are no aspects of life that the pain leaves untouched. And it’s become the strongest voice in my life.

"Pain becomes all-encompassing. It leaves no aspect of our bodies or lives untouched and becomes the strongest voice in our lives." Share on X

The pain is like a kidnapper. It enforces you into a cage, you an innocent victim and the pain as your captor. It isolates you and robs you of your already fragile independence. Every step sends a jolt of debilitating pain throughout my spine and legs. It prevents you from venturing too far, shackling you to the house.

Chronic pain is the biggest thief. It steals your independence, your plans, your sleep…it steals your life.

"Pain is like a kidnapper. Enforcing you into a cage, and you as it's innocent captor. It isolates and robs you of your already fragile independence." Share on X

As the days of crippling pain increase, so does the shade of the dark circles under my eyes, thanks to insomnia that develops as a result. Along with the dark circles, my eyes are red from all the tears shed as a result of the excruciating pain and the subsequent lack of sleep. Days in which my existence is more concerned with survival, clinging onto the edge of a cliff by my fingertips and grasping on until the time I can take the next dose of painkillers — medication which only dulls the pain. But, when the pain is at it’s worse, we will accept any relief we can get.

It can be difficult to feel happy or joy during a relentless pain flare. The unpredictable nature of the beast; not knowing when the next incapacitating pain will strike. I could be feeling great one minute and overwhelmed with immense pain the next. It is hard to find joy while trapped in a life that you didn’t want or ask for, and one in which you are unable to escape.

"It is hard to find joy when trapped in a life that you didn't want or ask for, and one in which you are unable to escape." Share on X

Living with constant and unrelenting pain is much like living under a permanent dark cloud. Feelings of joy, happiness, and contentment feel like they are so out of reach. But when these feelings go on for so long, we realise that this has to change. With the realisation that the pain is forever so, we have to find happiness for ourselves. To allow a slither of light between the dark clouds, and welcome some light within the darkness.

When we realise that pain is forever so does the realisation that we need to search for joy within it.

"With the realisation that pain is forever, we so to understand that we have to search for joy within it ourselves." Share on X

For some, it sounds counter-intuitive; the idea that a person can feel such pain but can also feel happiness at the same time. How can that be so? It’s difficult yes, it’s not about denying the existence of pain but acknowledging and accepting it. Accepting the pain and illness as permanent companions limit the power they have over our thoughts and emotions. I can accept I am in pain and the unfairness of it, but also not allow the agony to stop me from welcoming positivity and joy in my thoughts.

I have experienced many incredible moments while being in a great deal of pain. Moments such as travelling, for example. My last encounter with travel was also one in which I was suffering a torrent of agony. It failed to stop me however from appreciating the awe-inspiring scenery before my eyes.

Travelling is one such pursuit that makes you fully appreciate the real magic and beauty of the world outside our immediate surroundings. But much more, it allows us to venture beyond our everyday life. Beyond our lives with chronic pain. It’s a beautiful reminder that there is so much more to life than pain. More to our lives, and more which defines us beyond pain and illness, something which can be difficult to remember while in the midst of such devastation. It provides the opportunity to steal time back from the horrible thief that is chronic pain.

"Seeing the world reminds us that there is more beyond pain and illness. It provides the opportunity to steal time back from the horrible thief that is chronic pain." Share on X

The amazing scenery that I’ve seen as a result of my travels. Joyful and happy memories that they evoke despite the recollections of the pain and illness that threatened to blight the trips.

While experiencing such desolation during the everyday, mundane days of our lives, however, it can be difficult to find and appreciate moments of joy. When the pain is piercing, it is only by observing that for which you are grateful for is often the only thread of hope to grip tight. And without hope, we would not be able to see a way through the pain and the myriad of other symptoms that accompany it.

"When the pain is piercing, it is only by observing that for which you are grateful for is often the only thread of hope to hold onto – without hope we would not be able to see a way through." Share on X

Allwoing a small moment for gratitude and positivity with the The Happiest Gratitude Journal from The Itty Bitty Book Co: https://ittybittybookco.com/products/the-happiest-gratitude-journal

Joy is the smooth and creamy taste of chocolate on the tongue. Happiness is wrapped up beneath a warm blanket with a superb book. There is a pleasure to be found with a binge-watch of a favourite television box set. Or a movie marathon beneath a comforting blanket or duvet. Enjoyment is the distraction from pain and illness with an expedition outside the house. It’s the enjoyment of a warm and satisfying mug of hot chocolate in a favourite haunt.

Joy is an unexpected phone call or text from a good friend. It’s an acknowledgment that we are loved and we’ve not forgotten while the pain has shackled us to a sick bed.

Positive and uplifting quotes can help us find joy within our lives with chronic pain. — We can find joy even in the midst of pain and illness but only if we do our best to search for them.

There are moments of happiness and joy amidst the destruction and devastation of chronic pain. The sun can prevail amongst the dark, thunderous storm clouds allowing light to banish the darkness that exists.

"There can be moments of happiness and joy amidst the devastation of chronic pain. The sun can prevail amongst the dark, storm clouds allowing light to banish the darkness that exists." Share on X

If pain is making its destructive presence known in your life, I hope you can find moments of joy regardless. And I hope that you are able to banish the clouds and the subsequent darkness with light and hope.

You are not alone.

In Chronic Illness

A Year of Resilience

January 5, 2019 5 Comments

At the beginning of 2018, reflecting on 2017 and the year that I wanted to live, I chose resilience as my Word of the Year.

Choosing a word, or theme for the year ahead is much less rigid than making New Year’s Resolutions. Resolutions are difficult when living with a chronic illness as they are so unpredictable. Symptoms can flare at any time. Even with extreme effort, resolutions are hard to keep, especially when we are too sick or in too much pain to leave the house.

Resolutions are hard to stick to when living with a chronic illness as we are often sick or in too much pain to leave the house. Share on X

When living with a chronic illness, it can be hard to celebrate the New Year as we can often feel that nothing in our life changes; only the knowledge that we will still be sick

Having a theme word for the year ahead, however, gives a sense of direction for plans you wish to achieve. The flexibility to adjust them when symptoms deteriorate, and you are no longer in the position to accomplish your goals. We are less likely to feel like a ‘failure’ when we are no longer able to pursue our given resolution. Instead, we are still able to aspire to our chosen word of the year, but doing so from a different direction.

Having a Word of the Year instead allows you the flexibility to adjust our goals when symptoms deteriorate and are no longer in the position to accomplish them. Share on X

What is resilience?

The definition of resilience is:

the capacity to recover quickly from difficulties; toughness

There is no question that those living with chronic illness and chronic pain face more adversity than most. As soon as we think we are starting to feel better than a debilitating flare knocks us back down. Leaving us unable to get back up again.

Resilience is a necessary skill to possess when living with a chronic illness as it allows us to overcome stumbling blocks instead of allowing them to defeat us. Share on X

It’s a quality that allows people to rise from the ashes. And the strength to overcome stumbling blocks instead of allowing failure or obstacles to defeat them. Resiliency is, therefore, an essential skill to possess when living with chronic illness and chronic pain.

Resilience Quote from Jamais Cascio | Brain Lesion and Me

When dealing with setbacks, or when the symptoms become spectacularly debilitating I retreat. No longer able to locate resilience on the map of coping strategies for living well with chronic illness. No longer able to fight, but to choose to flee, and wanting to isolate and avoid so no one can witness the pain and misery hiding in the darkness.

If there were a map for coping strategies for living well with chronic illness, resilience would be the most crtitical location. Share on X

I wanted 2018, therefore, to be the year when I learned to cultivate resilience. The way we choose to perceive our lives and the pressures that come along with it determines how we handle them. To help change my perception of my situation, I, therefore, need to adapt to how I see my disorder and how it affects me – allowing the ability to change the things that are within my control and get past setbacks without giving in to hopelessness and frustration.

I wanted to work on resilience so I would have a better handle on changing things within my control, and getting past setbacks without giving in to hopelessness and frustration. Share on X

How Have I Helped to Cultivate Resilience In My Life

Acceptance

The first step to building a happier and more successful life despite chronic illness is always acceptance. To accept this new, scary and often frustrating reality, and move forward from there. Even when moving forward feels like crawling, ever so slowly. Even when progress feels elusive, and success feels ever so far out of reach. Acceptance only then makes it easier to care for yourself, preempting your body’s needs and finding solutions.

Self-Compassion

It’s easy when we are feeling ill, and aware of all the jobs that are left unchecked on our to-do list, to feel disheartened. It’s easy to feel shame and guilt. And feel like a failure. We often think that if we only tried harder, we could have achieved it. When we are feeling at our lowest, it’s easier to remember our failures.

What we need, however, is to acknowledge and appreciate our achievements. And the accomplishments do not have to be big, even the small and everyday achievements should be celebrated. After all, when hindered by incapacitating symptoms, every success was hard-earned.

We need to acknowledge and appreciate every achievement as due to the incapacitating symptoms that afflict us; every success was hard-earned. Share on X

Living with a debilitating illness is emotionally and mentally demanding. There are times when we feel we can no longer endure such pain and hardship. Times when we think we cannot survive. It’s during these times when we need self-compassion. To acknowledge these feelings, but to recognise, we have felt this way before.

To be resilient, we must accept our long track record of dealing and surviving pain and illness. Only then can we recognise those coping strategies that have helped us in the past and implement them during future flares.

To be resilient, we need to accept our long record of dealing and surviving pain and illness. To recognise that we had felt this way before and remembered that we survived. Share on X

Remember To Be Grateful

Have you ever noticed how our brains tend to remember negative things more than positive ones? Our brains are hardwired to do so, as it served an evolutionary advantage to help us survive dangerous situations.

Unfortunately, this is now a maladaptive response, as many of the adverse circumstances we face are not life or death. To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. It can help us gain some perspective when our symptoms at their worst, and we think we won’t ever feel better.

To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. Share on X

Hope is hard to find when living with chronic illness. We are often in situations where crippling symptoms physically and emotionally weaken us. But by brainstorming potential ways to improve the current situation and ways to feel better provides a little glimmer of hope; of an improved existence. I have found writing down times when I have persevered despite the limitations I live with reminds me that I am strong enough to pursue the things I may not think I can achieve.

We need support from a compassionate and supportive tribe when in the midst of chronic illness

Get Support From Our Tribe

Friends, family and those within our online support groups are important in providing emotional support during the difficult times. For resilience, it is essential to acknowledge that we often need help, comfort, and someone to give advice. Having someone to understand and support is vital to stave off isolation. This year I have found that having someone to confined in about my fears has helped to reassure and encourage me and quell the anxieties. It has helped me be more positive and resilient as a result.

Has my Year of Resilience worked?

At the end of 2017, and going into 2018, I became lost in my suffering, and the extreme pain I was experiencing. It felt that I had lost the ability to hope, and instead was left with a yearning to give up.

After a long year of reading many books on positive psychology and those on resiliency and working on the techniques above, I am feeling a lot more positive.

Engaging in positive thinking does help change your perspective – it doesn’t cure chronic illness, unfortunately, but it does make it easier to cope and bounce back from the dark days

Every year when a new year dawns, messages of “a new year, a new you” arrive in your inboxes. Chronic illness, however, plays by no such rules, they don’t disappear because the book has closed on the year. We often wish for a new year without the burden of our conditions, but this is merely a dream with no possibility of becoming a reality.

Although we are inundated with messages of 'a new year, a new year' when living with a chronic illness, however, this is a dream with no possibility of becoming a reality. Share on X

My year of building resiliency has taught me, however, that despite the limitations that befall us, life can still be good. It has shown me that we are stronger than we often give ourselves credit for, and there are still many more possibilities that await us. I still have bad days, of course, and days where I want to give up but by using the lessons I’ve learned, I know I can get better at bouncing back. Resiliency is much like a muscle, the more you work it, the stronger it grows.

What progress have you made with your 2018 Word of the Year?

In Chronic Illness

Through The Lens Of A Flare

October 13, 2018 3 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. I’ve decided to take part in this month’s Link Up Party, using the prompts to describe my experience during the latest flare caused by Functional Neurological Disorder (FND).

Budgeting

Budgeting: Noun. An estimate, often itemised, of expected income and expense for a given time in the future, a plan of operations based on such an estimate. An itemised allotment of funds, tine, etc for a given period. The total sum of money set aside or needed for a purpose, e.g. the construction budget.

Often asked to contemplate the word budgeting, many would do so in regards to money and finances. However, when living with a chronic illness, a more valuable commodity is energy. Or spoons.

[Tweet “When living with a chronic illness, energy or spoons becomes such valuable commodities.”]

The Spoon Theory is a metaphor created by advocate Christine Miserandino. The metaphor is used to describe the planning that those living with chronic health conditions have to do to conserve and ration their energy reserves to accomplish, well anything. Christine conceived the favourite metaphor after a discussion with a friend. Her friend had asked what living with lupus was like for her. To use a visual aid to help with her explanation, Christine handed her twelve spoons and asked her to describe the events of a typical day, taking away one spoon for each activity. It demonstrates the need to ration the spoons we do use to avoid running out before the end of the day.

[Tweet “During a flare we have to carefully budget the number of spoons we need for the day ahead.”]

During a flare, however, further limits the number of spoons available. And is something that I have been experiencing during this prolonged flare recently. Even doing a small amount of chores has left me severely fatigued, and a need to recover the next day and sometimes even longer. As a result, I have had to carefully budget the number of ‘spoons’ or units of energy. If I fail to do this, it could leave me in more pain than I’m already in, or not even able to get out of bed the next day. It requires me to be strict with myself and my time, putting off some tasks until the next day or even when I’m feeling ‘better.’

spoons a wonderful metaphor to describe the fatigue that comes with living with a chronic illness — Spoons to represent the limited units of energy when living with a chronic illness with each activity removing one from your supply

Speeding

Speeding: move quickly

What a problematic prompt, especially when writing about an experience of a flare.

Speed is not generally something which is present during a flare. Recently, the trembling and weakness have worsened, requiring to move slowly and methodically to avoid falls or legs suddenly collapsing. To speed or move quickly, therefore, is not currently in my vocabulary.

[Tweet “To speed or move quickly, is not currently in my vocabulary.”]

The only thing I could come up with, however, is changing into pyjamas! Anyone who is feeling unwell craves the pleasure of wearing comfortable clothing. And is there anything more comforting and satisfying than a pair of warm, snuggly pyjamas? As soon as it’s convenient, or even as soon as I set foot in the house, I love to race inside to get changed into my pyjamas. And this is never more evident than when going through a flare. During such times, I seem to spend more time in my PJ’s than anything else.

[Tweet “There is nothing more comforting during a flare than getting changed into warm, snuggly pyjamas!”]

The intensity and duration of this flare also seem to be speeding, however. I sometimes question and fear whether it is just a flare and not a deterioration.

Pyjamas are a necessity for flare days — Warm and comfortable pyjamas are a must for flare days! And these are my favourite with matching fluffy bed socks!

grey and pink floral loungewear from M & Co — A comfortable and warm pair of loungewear or pyjamas are a necessity when experiencing a flare

Slowing

Slowing: moving or proceeding with little or less than usual speed or velocity: a slow train. Characterised by a lack of speed: a slow pace

Ah, yes, slowing is an apt noun for describing life during a flare.

Life seems to slow down while in the midst of a flare. Days and very often nights are full of debilitating pain and the effects from other horrendous symptoms. Symptoms so intense and crippling that minutes start to feel like hours, and hours feel like days.

[Tweet “Days are filled with debilitating pain…minutes start to feel like hours, and hours feel like days.”]

It feels that time has paused, and pain and other problematic symptoms are the only things that we can focus on during the present moment.

Physically I have been slowing down also. The trembling and weakness in the legs have been severe, having an adverse knock-on effect on my balance. As a result, I have needed to make small and tentative steps when walking around to ensure I don’t lose balance and to protect myself from falling.

Slowing down, in general, is excellent advice for anyone with chronic illness who is experiencing a flare. To learn to listen to what your body is telling you. To rest when you need to recuperate.

[Tweet “Slowing down is excellent advice for anyone who is experiencing a flare. To rest and recuperate.”]

Living Life Like a Snail — When going through a flare, I tend to move at a snail’s pace!

Evaluating

Evaluating: form an idea of the amount, number, or value of; assess.

I think there is an innate need in all of us to assess how well we’ve done at something. To ask, had I done my best? Could I have done more?

During a flare, and with more time than I know, what to with or have the energy for I tend to start evaluating everything. I assess the actions, or rather inactions of the day and the accomplishments (or lack of) and become wholly dissatisfied with both myself and my life. I start to compare my experience with others and begin to grow depressed, feeling as everyone’s lives have moved forward while mine has stagnated.

Evaluating can both be useful and damaging. Personal accountability is vital as it gives us greater autonomy over our health. And evaluating aspects of our health help us with this, as we gain more understanding of appropriate coping strategies. A better insight of the various signs that tell us of an impending flare. We learn a deeper awareness of our health condition. However, it can also be damaging as it has a detrimental effect on our self-esteem and mental health.

[Tweet “By evaluating the pain and what does and does not help makes it easier to manage future flares.”]

While in the thick of this current flare, I had begun noticing that some of the coping strategies that have helped in the past no longer seem to be easing the excruciating pain.

By evaluating my pain and what does and not help calm the burden of it, the better equipped I am to manage future pain flares.

Escaping

Escaping: break free from confinement or control.

I think everyone at some point in their lives has wanted to escape. To pack our prized possessions and avoid the mundane routines and responsibilities of everyday life. Escaping to a beautiful, tropical island or inside a film, or anything else a person desires. Escaping can be enticing.

Living with a long-term health condition, like a neurological disorder that inhabits my existence, escaping can be even more appealing. To avoid the very knowledge that chronic equals forever. Escaping the pain, and the other incapacitating and constant symptoms, the treatments and its endless side-effects, and the limitations that exist.

[Tweet “The opportunity to be able to escape debilitating pain is appealing but sadly isn’t possible.”]

Unfortunately, escaping from our bodies and the illnesses that permeates deep inside them isn’t possible.

No exit when experiencing a flare with chronic illness — When experiencing a flare, there are no exit signs or means of escape unfortunately

Can’t escape a flare, however

While in the midst of a flare, however, a yearning for an escape becomes even stronger. To be able to leave behind the disarming pain, fatigue and weakness and to visit a quiet and serene place where such things don’t exist. But we can’t. We can only lie there and suffer the profound consequences of such a flare. During such times, I find that my only means of escaping are through captivating novels, living vicariously through the stories and adventures of others, or by getting lost in a boxset binge of one of my favourite television shows, or a film that is both absorbing and comforting. My current favourite boxsets to binge watch are Arrow and Blindspot, two box sets that I’ve added to my already extensive collection. Or an escape via social media. Anything to be able to get my mind off the pain, and trembling that is persecuting my lower limbs, and occasionally my entire body.

Flare days often calls for a boxset binge! — Flare days often call for a box set binge as a distraction from pain and other debilitating symptoms. Arrow (S6) and Blindspot (S3) are two of my current favourite shows to watch

[Tweet “The only possible escape from a flare is anything to help distract me from the pain and trembling.”]

Any escape would be welcome, but when experiencing an intense and prolonged flare like the one I am currently enduring, the options are limited; barely being able to move from where we lay.

Of course, I would much rather an escape in the form of a cruise!

In Chronic Illness

Being a Prisoner to Chronic Illness

December 29, 2017 26 Comments

Being A Prisoner to Illness

Loneliness. Isolation. Solitude. Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.

Not fitting in

"Loneliness. Isolation. Solitude. Three words that I would describe life with chronic illness." Share on X

Having experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years.

what-a-puzzle-to-the-rest-of-us-is-belle

Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

The Limiting of Symptoms

It’s difficult living with a neurological condition that affects your perception of the world. Some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.

Feeling pushed out and neglected because of symptoms of chronic illness

We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘All By Myself,’ and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

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I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Prisoner to Chronic Illness

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

"Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life." Share on X

During our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer. As much as I would like to get out of my ‘prison’ and participate fully in life, it is incredibly difficult. It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.

At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.

Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!

Finding Companionship Amongst Solitude

Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations. After being stuck inside the house for so long, it seems that we have forgotten how to converse.

"Netflix is a welcome distraction from the silence and solitude that surround us." Share on X

The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.

It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.

"Social media helps with the loneliness and isolation that chronic illness can bring." Share on X

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).