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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
Happiest Gratitude Journal
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.

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.

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A post shared by Rhiann Johns (@serenebutterfly) on

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.

The best is yet to come…

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.

Some of the amazing books I’ve read.

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

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.

A butterfly is a beautiful symbol of acceptance. It represents endurance, change, hope and life. A reminder that something beautiful can emerge from something completely falling apart.

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?

What does it mean to be a warrior?

What images evoke when you think of the word warrior? 

Warrior (noun)

1. a person engaged or experienced in warfare; soldier.

2. a person who shows or has shown great vigor, courage, or aggressiveness

For many, when we think of a warrior, an image of a soldier may come to mind.  A brave man or woman, in uniform going to war on a battleground far away.  Or those courageous men and women working on the front line in the emergency services.  Those who run toward danger when many more run far away from it. 

soldiers fighting on the front line in war.  What we often think when we hear the term warrior
Soldiers fighting on the front line during a war is a classic depiction, and one most people think of when we think of the word ‘warrior’

An image that may not cross one’s mind is one of a person living with a chronic illness.

However, words such as warrior, fight, battle, and war have become synonymous in discussions regarding illness and those living with, such conditions. We’re brave in the face of life with a long-term health condition. And we approach the unknown of everyday life with courage, fighting for a semblance of a life.

"When we think of a warrior, we think of those who run toward danger. An image that may not come to mind is that of someone living with a chronic illness." Share on X

It has become a somewhat controversial subject within the chronic illness community, and which has inspired much debate.

The Problem with Words Such As Fighter, Battle and Warrior

Some reject these warlike rhetoric connotations of illness and those who live with them. For many, their conditions are a part of them. A part of them much like the colour of their eyes or the freckles on their skin. To fight the disease, therefore, is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming.

"To fight the disease is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming." Share on X
We don’t think of ourselves are brave, courageous or strong when living with a long-term health condition. But we are, and often it’s because of circumstances beyond our control. Often, we are strong because we have to be.

Further, many argue that words such as ‘fight,’ ‘battle’ or ‘war’ are polarising, suggesting that much like their literal meanings, there is a winner and loser. It suggests that if we succumb to the debilitating and often devastating symptoms, it’s because we haven’t fought hard enough. Furthermore, it implies blame upon the person afflicted by the illness.

People voice platitudes such as ‘brave’ to describe our struggles. Although it’s often in an attempt to be supportive, it instead feels patronising, much like being patted on the head like when we were young by distant relatives. In truth, however, we feel far from brave or a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms.

"We feel far from being brave or being a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms." Share on X

Are We Warriors?

To us, we are not brave, we fight and survive, not because we are fighters or warriors, but because we have no real alternative.

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Wearing my new #necklace today with pride! It reads #warrior which is a word which is controversial in the #chronicillness community with many who do not like or use the word in relation to living with a chronic illness. For many living with illness is not a fight or a war. But recently with the debilitating trembling in the legs, and #chronicpain just getting up every day and doing anything, especially taking up #aeropilates again is a fight. Fighting with my legs and fatigue just to get up and out of bed. Fighting with my legs to stop them from giving way. Fighting for a semblance of a normal life. So yes, living with this neurological disorder often feels like a war and still I am here fighting. I am a #warrior #spoonie #chronicpain #chronicallyawesome #chronicallyillwarrior #chronicillnesswarrior #chronicpainwarrior #jewellery #mantra #chronicillnesslife #chroniclife #FND #neurologicaldisorder #functionalneurologicaldisorder

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After experiencing a prolonged and a crippling flare, however, I am starting to embrace and appreciate the title of being a warrior. Even more so, after a recent trip to the Harry Potter Studio Tour which proved to exacerbate the symptoms.

It was further evidence that I am not normal. That I never will be healthy. I’m in constant pain, constantly dizzy, and a continual trembling sensation consumes my legs. My life consists of numerous falls, many days where I struggle to get out of bed, and plentiful occasions whereby my legs collapse unexpectedly.

Embracing The Warrior Inside

On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality. We are all fighting in ways that only other warriors can understand. We fight to be able to get out of bed in the mornings, struggle through the days, impeded by pain and fatigue. Fight to be able to get out of the house, and fight to be able to complete the errands that await.

"No, we are not fighting in a war. But we are fighting for our lives; fighting for some semblance of normality." Share on X

Yes, there are days when we are defeated — days when the pain, fatigue and the multitude of other symptoms win the battle on a given day. But still, we do not give up. We may not be able to try again tomorrow, but we don’t surrender to the demon that is our illness. Symptoms such as the dizziness and vertigo make it difficult for me to be able to cope with particular places, but still, I have refused to submit to their hold on my life.

Woman carefree and happy existance
We are warriors as we never give up, never surrender and are continually picking ourselves up and trying again

And as much as we fear the symptoms becoming victorious, and becoming defeated by our silent enemies, we never stop trying. We never give up. I am not suggesting that I am a brave or courageous person merely by living with an enduring neurological condition. Being fierce, brave or a warrior does not make you any more likely to beat the disease or the illness that is ravaging inside your body.

The Comfort that Being A Warrior Has

It does, however, help you get through the difficult times. It helps you survive when it seems that you can no longer bear the pain any longer. I attempt those places that provoke such attacks, and sometimes I am unsuccessful, but still, I try again. It brings comfort, the knowledge that if we are fighting against the impact, the condition has, then we are in control and not that which afflicts us. And that is why I bought the necklace. It is a reminder of the many victories I have achieved despite the limitations imposed due to my various symptoms. It is a constant reminder of my strength in the face of illness.

"My warrior necklace is a reminder of the many victories I have achieved despite the limitations imposed by my symptoms. It is a constant reminder of my strength in the face of illness." Share on X

However, it is a motivator. Life with a neurological condition presents a series of challenges to overcome. If we are to prescribe the ‘fight’ metaphor to life with an illness, it can give both direction and motivation. If winning is the ultimate objective, then striving for a triumph over adversity can provide us with the drive to wake up each new day and live with the presence of such monotonous symptoms all over again.

And that is what we do every day. We fight to live. We are warriors.

Embracing The Warrior Inside

Medical Definition of Flare: 1. an exacerbation of a chronic disease. Often referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen. A flare is a transient worsening of a disease or condition that eventually subsides or lessens.

One of the most frustrating and stressful aspects of living with a chronic illness is the unpredictability. The never knowing how you are going to feel or any given day.  Never knowing if today is going to be the day when symptoms are going to worsen suddenly.

[Tweet ” Concerning chronic illness, a flare occurs when its symptoms suddenly worsen.”]

We can become hyper-vigilant, analysing every pain or unusual sensation as a potential precursor for an oncoming flare.  It can feel powerless; we control the tiniest aspects of our health we can such as pacing ourselves, ensuring we get enough sleep and maintaining a good diet. But still, we find ourselves in the midst of a flare.

And when we are in the midst of a flare, there is still worry and uncertainty.  Just as we are in the dark as when a flare will occur, it’s also not known how long it will last.  The increased disability, isolation, loneliness, and guilt only add to the stress.  And the longer the flare, the greater these stresses impact us.  However, these stresses can not only be consequences of the flare, but they also have the potential to prolong it.

Living with chronic illness and pain is much like riding a rollercoaster!

Living with a chronic illness and experiencing a flare is very much like riding a tumultuous rollercoaster.  A rollercoaster with many ups and downs, twists and turns, but not knowing when they are going to occur.

[Tweet “Experiencing a flare is like riding a roller coaster – lots of ups and downs and twists and turns!”]

In my last post, ‘Becoming Lost During a Flare: Revisiting Acceptance‘ I discussed the effect that my latest flare has had on not only my physical health but also the impact it has on my emotional health.  The anxiety and loss of confidence that has resulted from the physical and psychological losses that have occurred during this particular flare.  The symptoms have become a thief, stealing little things which are essential to me and help me function within the world around me.

Given that the experience of a flare is negative, how can we survive while going through one?

How To Survive a Flare

Surrender

It’s interesting that this word has such negative connotations.  For many, surrendering means giving up.  The reality is that it means letting go.  Before, acceptance when a flare would occur, I could feel myself tensing, trying to fight against it, to make it go away. Doing so, however, actually had the oppositive effect.  Instead, the flare would fight back, becoming stronger.  By surrendering, we choose to accept the reality as it is in the moment.  And when we accept the reality, we are more likely to take the steps needed to take care of ourselves appropriately.

[Tweet “When we accept the reality, we are more likely to take steps needed to take care of ourselves.”]

Photo by Katii Bishop from Pexels

‘This Too Shall Pass’

As stated in the definition at the top of the post, a flare indicates as a transient worsening.  Transient of course meaning fleeting or short-term.  It will eventually subside.  No matter how many lows there are on our roller coaster, we will ultimately find the highs again.  And we must remind ourselves that during the darkest times; to hold onto hope.

[Tweet “It’s important to remember that flares are fleeting and will eventually subside.”]

Don’t Blame Yourself

When we are experiencing a flare, there is a tendency to look back on what we have done which could have triggered it. To blame ourselves for our current predicament and think that we could have avoided it had we done x, y or z. The reality is, however, that it is not our fault.  Our bodies and symptoms are highly unpredictable with its own rules and agendas; flares are often unavoidable and going to occur whatever we choose to do.  Feeling guilty is not productive and is not going to make you feel better.

[Tweet “Feeling guilt is not productive; symptoms are highly unpredictable with its own rules.”]

And on those occasions that the flare was a result of our actions, we can use it as an opportunity for growth.  To learn from our mistake and to resolve to do better in the future.  Blame and recriminations are not going to help you feel better.  What will help is to return to those self-care behaviours (such as resting) that will ease the burden of suffering worsening symptoms cause.

 Remind Yourself of Your Accomplishments

While in the midst of a flare, we are unable to achieve very much.  Regardless of the size of our to-do list, we are unable to gather the strength or motivation to complete the tasks.  As a result, it can lead us to feel unproductive, as if we are failing ourselves and those around us.  We never, however, celebrate and reward ourselves for which we can do, especially in the face of adversity and limitations.  So, ditch the to-do list and instead make a list of the things you have done despite chronic pain and other debilitating symptoms!  And reward yourself – enjoy your favourite snack or put on a feel-good film.

[Tweet “During a flare, ditch the to-do lists and congratulate yourself on what you have achieved.”]

Create a Self-Care Box

As we never know when a flare will occur, or even how long it will last.  Preparing a Self-Care Box is something you can create beforehand to help you during times of extreme worsening of symptoms. By being proactive and making a plan before its onset, we remove the challenge and stress of coming up with a sufficient self-management plan, which can be difficult when we are in the midst of one.

[Tweet “A Self-Care Box should contain things which make you laugh, to help calm you, and ease suffering.”]

A self-care box should contain various items that comfort and please you; things that nourish your soul and help you cope during times of stress and suffering.  It could include an MP3 player full of songs that help relax and makes you happy.  It could also contain meditation and relaxation exercises which are excellent at reducing stress.  Other items might include magazines and books, inspirational quotes and affirmations, a journal for when you feel well enough to write.  I always add my favourite pair of comfortable pyjamas.  Things to make you laugh, things to make you calm, and ease your suffering. These are all ideas on what to include, but a self-care box should be personal to the individual.

Find Distractions

We all need a break from the chronic pain and other debilitating symptoms. However, when experiencing a flare this can be easier said than done.  As much as you can do, find a break and solace from crippling symptoms through distraction.  Read a gripping book. Watch a mindless TV show or an utterly magical film.  Read articles online about a subject that fascinates you.  A distraction, of course, will not take the pain away entirely but by taking attention away from it, but it might make it easier to manage.  It can also help prevent catastrophising thoughts that can exacerbate symptoms.

[Tweet “Distractions can help prevent catastrophising thoughts which can exacerbate symptoms.”]

Connecting with others also experiencing chronic illness and chronic pain can make experiencing flares easier to deal with

Seek Support From Your Tribe

Attempting to endure chronic illness on your own can be isolating, leading to anxiety and depression.  It can also worsen the already debilitating symptoms, prolonging the duration of the flare.  Reaching out to others for support and encouragement when pain levels rise and symptoms intensify.  Just talking about how you are feeling, and confiding the extent to which you are suffering to those who understand and can help calm the ferocity out of a flare.  Even better is talking to those who also experience chronic illness and pain, and who can prove to be an excellent wealth of information for coping with pain and other symptoms.  Join a support group or community for those living with chronic illness and pain, and be there for others when they are in need of support.

[Tweet “Reaching out to others who understand can help calm the ferocity out of a flare.”]

Those are only seven tips on how to survive a flare, but what are some of your favourite ways to cope when they suddenly occur?  Feel free to add your advice to other warriors below…

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