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In Chronic Illness

Coming Out Of A Flare: Finding Light At The End Of A Tunnel

May 14, 2019 12 Comments

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

Anyone living with a chronic illness has experienced a flare. And so, would agree when I say how difficult and distressing it can be experiencing one. Many fellow bloggers have written posts on what it is to experience a flare. I have even written a series of posts on living through a hellish flare. It can be an extremely dark time, but what happens when the current eruption of disabling symptoms start to dissipate into the ether?

Black and white silhouette of a woman standing and staring out of a window — During a flare we are trapped inside bodies that are overrun with symptoms; and trapped inside the same four walls of our homes as we wait for it to be over

"Living through a flare can be an extremely dark time, but what happens when the current eruption of disabling symptoms start to dissipate into the ether?" Share on X

Out of A Flare – Starting to Regroup and Putting the Pieces of a Broken Life Back Together

Experiencing a severe and debilitating flare can make you feel like life is on pause. Energy and strength, everything that usually helps you continue despite persistent symptoms from chronic illness are in scarce supply. As such even getting out of bed or having a shower requires a considerable amount of energy. Days spent rationing the limited power that we do possess. There is no energy to live, only just enough to survive the days ahead.

When coming out of this current flare, we begin to see the light at the end of a dark tunnel. As the light becomes nearer and brighter, we can start regrouping the pieces of our broken lives that illness has destroyed, back together. To start beginning to regroup, putting ourselves back together and allowing ourselves to regain control over symptoms that once had sole authority.

Black and white image of light at end of a long, dark tunnel — When coming out a flare we begin to see light at end the end of a very long, dark tunnel

"When coming out of a flare, we can begin to see the light at the end of a dark tunnel. As the light becomes nearer and brighter, we can start regrouping the pieces of our broken lives that illness has destroyed, back together." Share on X

After a flare, there is a need to regroup and regather the tools that had been cast aside, to help us thrive despite illness and its accompanying symptoms. To allow ourselves to retrace our long forgotten steps and to catch-up on the abandoned tasks from before the flare that knocked us down into oblivion.

Out of a Flare – A Need to Investigate and Identify Our New Limits

Every flare is different, and as such, we react differently to each one. And as we come out of a flare, there is a fear of doing ‘too much’ supposing that doing so will exacerbate symptoms, causing another flare.

"Every flare is different, and as such, we react differently to each one. And as we come out of a flare, there is a fear of doing 'too much' supposing that doing so will exacerbate symptoms, causing another flare." Share on X

The problem is, however, we no longer know of our new limits. We may now be able to do more before exacerbating symptoms, or it may be less. Our limits and what and how much we are capable of continually shifts. And as we adjust and accustom to our new limits, a flare occurs to restart the process all over again. Therefore, there is a need to investigate our new energy levels and identify our new limits.

Living with a chronic illness requires a constant need to reassess and investigate our new limits before the onset of symptoms, especially after a flare when we do not know when enough is enough

No one likes to be, or indeed feel unwell. To be constantly sick and continuously feeling the effects of debilitating symptoms is exceptionally unpleasant. Investigating, therefore, becomes another theme of living with a chronic illness. We are continually investigating ways in which we can improve our symptoms, even just a little. Investigating new measures we can undertake to lessen the severity or even the number of flares. Doing so, would drastically improve our quality of life and able us to experience life.

"Investigating becomes another theme of living with a chronic illness. We need to continually investigate ways in which we can improve our symptoms, even just a little." Share on X

Out of a Flare – Boosting Self-Care Habits

We may be coming out of a flare, but do not assume that it means we feel better and are suddenly back to our ‘normal.’ Recovering from a flare is a slow process. A process that does not just happen overnight. Many may assume that when recovering from a flare we need less self-care.

"If we don't boost the need for self-care we run the risk of exacerbating troublesome and unruly symptoms, and the risk of causing another flare." Share on X

I, however, would argue that we’re in fact in need of more self-care. If we do not take the necessary steps to look after ourselves, if we don’t, we run the risk of exacerbating troublesome and unruly symptoms. Taking the time for self-care activities that help boost physical and mental health is necessary to assist us to recover, and help stave off another deterioration.

"Taking the time for self-care activities that help boost physical and mental health is necessary to assist us in recovering, and helping stave off another deterioration." Share on X

Out of a Flare… Time to Explore New Settings

When I am in the midst of a flare, I am unable to cope with anything new and unfamiliar. Not knowing when symptoms are suddenly going to worsen, I crave the reassurance and security of a familiar and comforting setting.

belle quote beauty and the beast adventure in the great wide somewhere — When out of a flare, we start to crave new settings and are ready for adventure.

Coming out of a flare, I, however, start to crave and feel ready for more adventure. I am ready and feel more confident to encounter new settings. Living through a flare, therefore, feels very much like hibernation. A need to hunker down for comfort and to survive the current eruption of symptoms. Only as the threat diminishes, we then feel more prepared to leave the safe environment we spent during the duration of the episode. We now crave adventure, new settings to spend time in as long as we feel well enough to do so.

"Living through a flare feels very much like hibernation — a need to hunker to survive the current eruption of symptoms. Only when the threat diminishes, we feel ready and more prepared to face new and unfamiliar settings." Share on X

Out of a Flare – A Time for Reviving Life

As the flare passes, and we feel out of the danger zone for another one, we can finally start reviving our life. Reviving our love for the activities that fell by the wayside as we lay incapacitated by ruling symptoms.

"As a flare passes, and we feel out of the danger zone for another one, we can finally start reviving our lives once again. Reviving our love for the activities that fell by the wayside as we lay incapacitated by unruly symptoms." Share on X

Books and reading have always been a passion of mine, but during a flare, I have been unable to do so. But, as I am feeling stronger, the fatigue no longer causing double vision I can once again revive my enjoyment of reading.

pages of a book — At the end of a flare we can start to revive and breathe fresh into our lives. Start to revive forgotten hobbies and pursue our passions again. For me, and starting to feel better after a current flare, I have begun to revive my love for reading…

During the last month, I have already finished three books, and nearly half-way through the fourth. I am enjoying finishing my days, tucked into bed and losing myself in the fictional world created by the words of the author of my current choice, being immersed into another world, of another life, distracting me from the constant troubling symptoms of a neurological disorder.

Coming Out Of A Flare: Finding Light At The End Of A Tunnel

In Chronic Illness

Blooming Despite Adversity…

April 13, 2019 4 Comments

During Adversity, We Look For Inspiration

Waking this morning in unendurable pain, I felt incredibly discouraged. Unable to get out of bed due, I immediately grabbed my iPad, for much-needed positivity and inspiration.

On my Pinterest feed, I have a board entitled ‘Positivity.’ A board filled with beautiful and inspiring words that would fill even the melancholy of hearts with positivity. The board has an eclectic mix of quotes, from famous scholars to quotes from books and films. There is a quote for everyone.

‘The Flower That Blooms In Adversity Is The Most Rare and Beautiful Of All’

Scrolling through the many quotes that exist on the board, one immediately caught my eye. It read ‘The flower that blooms in adversity is the most rare and beautiful of all.” The quote above is from the Disney film Mulan. It is thought, however, the basis of the story is that of the Plum Blossom. The plum blossom is the earliest blooming flower that grows in China.

'The flower that blooms in adversity is the rarest and beautiful of all' is such an exquisite quote that encapsulates those who experience chronic illness wonderfully." Share on X

It does not wait for the sun and warmth of Spring to arrive before it blooms. It thrives in the winter before the leaves of the tree have fully formed. The people of China are thought to be proud of what the flower represents. The plum blossom has been the inspiration of many poets and artists for centuries.

the flower that blooms in adversity is the most rare and beautiful of all text with flowers wrapped around the text and flowers bordering the image

A flower will easily bloom given the perfect conditions; it is easy. A flower that grows despite bad and adverse conditions is unique and more beautiful because by all rights it shouldn’t have bloomed at all. The same principle can apply to people.

"A flower that grows despite bad and adverse conditions is unique and more beautiful as by all rights it shouldn't have blossomed at all. The same could be said for people." Share on X

Those who live through adversity and hardships is unique and beautiful because of them. Mulan is considered a heroine due to her overcoming the problems caused by her not conforming to the cultural standards of being a woman. And also due to the difficulties, she faces from serving in the army as another gender and eventually saving China from the Huns.

The Insecurities of Living With Chronic Illness

Everyone lives with insecurities. But, when living with a chronic illness, these insecurities grow exponentially. We feel sick the majority of the time which strips our self-confidence and sense of self-worth away. The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent.

"The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent." Share on X

But it is not only insecurities surrounding our bodies and our perception of beauty that we have to confront. There are many insecurities regarding everything outside of our comfort zone. Anything new and unfamiliar become frightening and overwhelming. After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be. We begin only to see our struggles and start defining ourselves by them.

"After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be." Share on X

There’s Strong, and Then There’s Chronic Illness Strong

What we forget, however, is the number of times we have gotten back up after being knocked down by illness. We get knocked down time and time again, but still, we rise. And when we are back on our feet, although it may not seem like it, we are stronger and more resilient than before. We begin to thrive and bloom when pushing past our demons, accomplishing things we may have never thought possible. However, despite all this, still radiating positivity and happiness despite the harsh conditions of living with a chronic illness.

"We forget the number of times we have gotten back up after being knocked down by illness. We get knocked down, time and time again, but still, we rise. Stronger and more resilient than before." Share on X

Yellow, blue and green watercolour background and text which reads there's strong then there's chronic illness strong

It is easy to go into survival mode when diagnosed with a chronic illness. To use disease as an excuse for everything that is wrong with life, or complaining about the impact it is having. However, in my experience and witnessing numerous people challenging their experiences into writing and advocacy and celebrating wins and precious moments, choosing to see them as blessings and not a right. It is these ‘rare flowers’ that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity.

"It is 'rare flowers' like those I have met in the chronic illness community that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity." Share on X

Thriving Even In Adversity

Perseverance is key to being able to flourish and bloom in any area of life. But perhaps more so for those living with chronic illness. To continually thrive despite limitations and restrictions that such illnesses place upon us is no easy feat. But still, we don’t give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no.

"But still, we don't give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no." Share on X

To thrive and not just survive life with a chronic illness, we must learn to listen to our bodies. To learn to balance our sheer determination versus that of the demands of the symptoms that vex us. And to recognise when we need to say no to something rather than the desire of wanting to say yes. Learning to do so, although it can be irritating can decrease the number of severe flares, increasing the opportunities for more fun. It can be tempting to rebel against the restraints that illness has but to flourish we need to learn to cooperate.

"It can be tempting to rebel against the restraints that illness has but to flourish sometimes we need to learn to cooperate with the symptoms and ultimately our bodies." Share on X

J.K. Rowling once wrote, its words uttered by her profound and philosophical character Professor Dumbledore. He said, “It is our choices that show what we truly are, far more than our abilities.” A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are.

"A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are." Share on X

Community: A Garden of Rare and Beautiful Flowers

The beautiful and rare flowers within the chronic illness community see opportunity even within the most adverse situations. When limited to bed, for example, we see a chance to relive happy memories. Or to catch up on something on our ‘I must get a chance to get round to that’ list. To thrive, we focus on what we can do instead of that which we are unable. I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven’t found the time to do so. It was during such a time that I stumbled upon the very quote that inspired this post. Inspiration often comes from the most unexpected of places.

"I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven't found the time to do so." Share on X

Every Flower Must Grow Through Dirt

It may often feel that the burdens of illness that are always present in our lives, it may feel that they have buried us. Unable to escape or grow due to the new constraints that it has placed in our lives. However, it does not have to be this way. It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt.

"It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt." Share on X

I am dedicating this post for all those who are stuck in the darkness. For all those who are only aware of the insecurities arising from living with illness. Know that you have the same abilities from your life before sickness and you are still capable of so much. You can thrive and bloom despite the restrictions from constant and unrelenting symptoms. You can become a rare and beautiful flower despite adversity. It is for those within the chronic illness community who continue to support and comfort for those in need in spite of their suffering.

field of white, pink and yellow tulips underneath a pink background with blooming despite adversity written

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

Looking Back To Move Forward

January 10, 2019 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. And to use the prompts to help me look toward the future with life with a neurological disorder.

Dedicating

Dedicating: Verb. To devote wholly and earnestly, as to some person or purpose

This year, I have made it my purpose to dedicate this year to becoming more positive.

Every year, emails start dropping in our inboxes promising a “new year, a new you.” They claim that with hard work, and dedication then we can become a new, improved and healthier version of ourselves. Sounds incredible, right?

A New Year, a New You?

When living with chronic illness and chronic pain, however, a ‘new year, a new you’ is merely a dream. With little to no chance of becoming a reality. Only a few days into 2019 and the crippling nerve pain that shoots throughout my legs has followed me into this year from the last. The promise of a fresh start, already obliterated.

When living with a chronic illness, a 'new year, a new you' is merely a dream with little to no chance of becoming a reality. Share on X

A ‘new year’ is an illusion as when living with pain and illness, as there is nothing new in our lives.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly) on Jan 6, 2019 at 6:40am PST

When living with chronic pain and other debilitating symptoms associated with chronic illness, it can be challenging to find joy and excitement for the new year. Particularly true when the only thing we have to look forward to is life with a chronic illness.

It can be challenging to find joy and excitement for the new year when the only thing we have to look forward to is the effects of chronic illness. Share on X

Following my year of resilience from last year, I am attempting to find the good in each day. And perhaps if I am unable to find the good, then maybe I need to create my own good things. Once again, I am dusting off my ‘joy jar’ in the determination to fill it up with some incredible memories from the year ahead.

I am dedicating this year to positivity!

Establishing

Establishing: Verb. To install or settle in a position, place, business, etc

I was disappointed at the end of last year to find that I had failed to reach my target to read 40 books by the end of 2018.

Anyone who regularly reads the blog, or follows me on social media will know that I am a massive bookworm, and reading is one of my favourite past times. However, symptoms such as pain, and dizziness make it challenging to be able to do so. Other times I am too tired to read, and I fall asleep before my head hits the pillow.

It is the first year, however, that I have been unable to reach my target on GoodReads. Because of this, therefore, it feels that much more of a failure. This year, I am going to establish a routine. To put aside some time for me each night, before going to bed, or time during the day when resting, to sit and read for an hour or even half an hour. Hopefully, by setting some time each day to read, even for just a short amount of time, I will reach my intended target with ease.

By establishing a regular routine and setting time aside each day to read it will help me reach my intended target with ease. Share on X

Breaking

Breaking: Verb. To put an end to; overcome; stop

Yes, I feel frustrated at myself and the symptoms that held me back from completing my GoodReads Challenge for last year. As a result, this year I am going to try and attempt to break from the guilt that emanates from the inability to complete tasks because of chronic illness.

I know that I must do better in accepting that this neurological disorder will forever accompany my life. I know I must ditch the guilt when I am unable to do something, or complete a task, or even I have to say no to something. After all, pain and the other symptoms that we have to deal with every day gives us enough to cope with already.

Pain and the other symptoms that we have to deal with every day gives us enough to cope with already without adding guilt into the mix. Share on X

Dealing with guilt on top of the all the other symptoms we have to continuously contend with uses up energy we simply do not have.

And guilt uses up energy; energy that is already scarce. Discarding the guilt, therefore, will allow that free energy for something else; something we can do.

Guilt uses up energy; energy that is already scarce. We need to break free from the guilt to allow us to use the energy for something else. Share on X

Last year, I also began the arduous task in breaking away from those relationships that were damaging my mental health. To defriend those on Facebook and break free from seeing pictures and statuses regarding events that I failed to be invited to, often not knowing about them until logging on to social media. It’s not because I don’t care about them, perhaps I do too much, and that’s why it hurts. It’s because they don’t care about me.

Strengthening

Strengthening: Verb. To make stronger; give strength to

If 2018 was a year of resilience, then I wish for 2019 to be a year of strength. I want to take steps to be physically and emotionally strong.

Recently, the pain and trembling in the legs have been particularly severe. The weakness is becoming problematic and leading to more episodes of them giving way. As a result, I need to find ways of strengthening the muscles in my legs.

It feels necessary as they continuously feel weak, yet it often seems impossible. The debilitating nerve pain and the constant fatigue just makes the mere idea of exercising daunting and unattainable.

I also need to strengthen my emotional resilience. To not allow the challenges and setbacks to knock the confidence that I have learned hard to regain.

Although I have determined to be more resilient during the last 365 days, does not mean that I am always successful at it. There have been times when circumstances have knocked me off course, leading to feelings of upset and frustration.

I must, therefore, learn to be stronger and not allow setbacks and challenges to enable me to fall into a depression.

Allowing

Allowing: Verb. To give permission to or for; permit

When I am alone, only greeted the sound of silence for company, it is easy to occupy myself with chores. To not allow me to enjoy the peace but to fill the silence and boredom with plenty of activity.

When living with a chronic illness, however, to do so often only leads to increased levels of pain and worsening fatigue. And is something that I am often guilty of, especially since the death of our dog nearly three years ago. I found it was easier to rest and be comforted by her affection when she was around. Now however, I struggle with the quiet and boredom of being alone and I tend to overdo things as a result.

This is the year that I am going to allow myself time to rest without guilt or blame.

This year, therefore, I am allowing myself to relinquish the need for activity and to be kept busy. To let me rest and let me be until the severity of the symptom subsides. To allow my body to recuperate until I am feeling physically better and stronger to be able to do chores.

It is the year for allowing myself to relax and enjoy the solitude by resting without giving in to the guilt.

What are your plans for 2019?

January Link-Up Party with A Chronic Life

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?