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Looking Back To Move Forward
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Looking Back To Move Forward

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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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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
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A Year of Resilience
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A Year of Resilience

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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?

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A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness

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Bravery: the quality or state of having or showing mental or moral strength to face danger, fear or difficulty.  The quality or state of being brave

It is not uncommon for others to remark on my bravery in the face of FND.  And in defiance of the many symptoms that accompany life with a neurological disorder.

Those closest to me throw words like brave, resilient and strong to describe me.

For me, however, it comes as a shock.

I look in the mirror and am unable to find bravery, or strength in the reflection staring back at me.  A reflection whereby I am only able to recognise fear and anxiety etched beneath the surface of my face.  I ask myself, can it be true?  Could I be brave, despite not feeling it or failing to recognise it in my reflection?

Reminiscing on my last few blog posts and retrospecting on the difficulties I’ve faced has only made me question other people’s perception of my apparent bravery. During a flare, I feel anything but brave or strong.  My sole purpose was to survive the day amidst the debilitating symptoms. Why is it that others see courage and strength within me, while I am unable to see it in myself?

"During a flare, I feel anything but brave or strong. Why is it that others see courage and strength within me, while I am unable to see it in myself?" Share on X
We are all told that strength and bravery are essential traits – but what does it mean to be brave? How does it look to be brave? Photo by Heather Schwartz on Unsplash

I came to realise that I have yet to recognise bravery within myself because I regularly feel an overriding sense of fear and anxiety.  So intense that it seemingly obliterates the ability to identify with the concept of courage or resilience.  Fear and anxiety, however, feel all too familiar, a supposedly permanent byproduct to life with a neurological disorder.  Another symptom that we have to learn to grapple with alongside numerous others.

"Fear and anxiety, feel all too familiar, a supposedly permanent byproduct to life with illness. Another symptom that we have to learn to grapple with alongside numerous others." Share on X
Anxiety another symptom of life with a chronic illness
Anxiety is often an additional and unwelcome symptom of life with a chronic illness

I have had to become familiar with all kinds of fear and worries while living with a neurological disorder.

Fear and Anxieties That Accompany Chronic Illness

"I fear the disorder and its unpredictability, always on edge, waiting with bated breath for symptoms to present themselves again." Share on X

One such example is the fear of the disorder and the way it takes over my entire life.  I fear the unpredictability of the symptoms; always on edge, waiting with bated breath for symptoms to present themselves again.  There are days when I feel relatively well, days where my mobility is OK and getting around is somewhat easy.  Other days, however, I am debilitated by pain and other symptoms associated with FND.

Hindered further by fear and anxieties; fear of the impermanence that illness has on every facet of my life.  Fear of the permanence of the condition and the huge question mark it leaves in its wake.  Fearsome and anxious thoughts wrangle for attention, shining a flashlight on everything that I cannot control.

"Fear and anxious thoughts fight for attention, shining a flashlight on everything I can't control." Share on X

When symptoms do begin their torment of my body and life, so begins a fear of what it means.  There is a worry whether these symptoms are the beginning of a severe flare.  Or worse, the start of a deterioration in the disorder with which we live.  We fear how long these symptoms will last and what our future will look like if they continue.  There is fear over potential treatments that we may need as a result, which causes further anxieties such as possible side effects. 

Many fears and anxieties accompany life with a neurological disorder.
Photo by Katii Bishop from Pexels

All of these are fears of the unknown. The many question marks that exist when diagnosed with a chronic illness.  And as these fears and anxieties intensify, so does the tight knot in my stomach, making me feel nauseous.  These intense waves of fear and anxiety only cause further exacerbations with the ongoing symptoms.  And as the symptoms intensify, so does the stress, creating a never-ending cycle, one which is difficult to break.

"There is a fear of the unknown when living with chronic illness." Share on X

The Lies They Tell

There are numerous scenarios where these anxieties can take hold, affecting my ability to function outside my limited comfort zone.  Many situations that trigger fear and anxiety, symptoms holding me hostage as worries over becoming severely unwell, or suffering a fall become prominent in my mind.  Even in places which are deeply familiar, where the layouts of shops or certain facilities are ingrained in my memory also becoming fearful due to the unknown of what is going to happen, catastrophising to the worse case scenarios.  Going to new and unfamiliar places, however, can invoke even worse anxiety due to all of the unknowns, and not knowing what to do or the best place to go if the worst happens.  As a result, we tend to confine ourselves inside of our comfort zones, limiting ourselves and markedly shrinking our world.

Homes can become like a security blanket
Our homes and places which are deeply familiar to us can become like a security blanket; somewhere where we feel safe despite the symptoms that are tormenting us.

The fears and anxieties tell us that we are not strong enough and that we are unable to cope with whatever our illness throws at us.  Our minds lead us to believe that these fears and anxieties are more significant than they are.

"Our fears lie to us, making us believe that we are not strong or brave in the face of illness." Share on X

However, they lie.

Our minds make us think that we are to blame for our illness, to make us feel shame towards ourselves for being weak.  I can understand now that this is wrong; illness is something that happens to us, not because of something we’ve done or an inherent character flaw.

"Illness is something that happens to us, not because of an inherent character flaw." Share on X

Anxiety as a Familiar Companion

Fear and anxiety have both been a long companion of mine, has become much a symptom of Functional Neurological Disorder (FND) as pain or trembling in the legs.  They feel familiar and have needed help to try and overcome its effect on my life, especially the impact they have on my experience with a chronic illness.  Many courses, such as one in Acceptance and Commitment Therapy (ACT) have taught me to change how I react to fear and anxiety.  Lessons on how to explore these deep-seated fears and what I can learn from them.

"Fear and anxiety I have become much a symptom of illness, as much as pain or dizziness." Share on X

It is essential to acknowledge the fear and anxiety and to become intimate with them.  By doing so, I can now recognise the physical manifestation, the thoughts that accompany them and finally how I respond. Through mindfulness, I have been able to learn so much about my fears and anxieties, and more importantly the knowledge that I do not have to relinquish all control over to them.  It reminded me of a famous quote by Mark Twain; “Courage is resistance to fear, mastery of fear, not absence of fear.”

Courage is resistance to fear, mastery of fear, not absence of fear

We are all prone to fear and anxiety in our lives, but what make us brave is feeling those feelings and moving forward regardless.  Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us.

"Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us." Share on X

This week, my Mum and I headed to London to visit the Harry Potter Studio Tour.  As a big fan of both the books and subsequent films, it has been somewhere I have wanted to visit for some time.  However, recently, a lot of my symptoms have worsened, experiencing what has been a severe flare.  And as the trip came closer, anxious thoughts began racing through my mind.  My mind began to deceive me into believing that I was not strong enough to be able to cope with the impending trip.  My mind led me to think that my symptoms and illness is stronger than me.  It even tried to convince me; it would be better if I would cancel the trip and not go.

"My mind often leads to believe that my symptoms and illness are stronger than me." Share on X

However, I refused to give in and yield to the demands of either the symptoms I live with or the ensuing anxiety, figuratively sticking two fingers at the intrusive thoughts entering my conscious thoughts.  I went regardless and yes, at times during the tour, it proved difficult because of pain, trembling and vertigo.  But I did it and enjoyed myself regardless.  There have been many instances where I have not been able to go to certain places or do something due to the severity of the symptoms.  Have I ever given up?  No, I may not go on that day but I dust myself off from the disappointment and my recriminations, and I try again tomorrow (or when the symptoms are less severe).

Courage doesn't always roar..I will try again tomorrow

So perhaps, I am braver than I believe myself to be and validation to myself that I am stronger than my illness.

"We are braver than we lead ourselves to be and are stronger than our conditions." Share on X
A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness
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Through The Lens of a Flare
In Chronic Illness

Through The Lens Of A Flare

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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.

Read more: Becoming Lost During a Flare: Revisiting Acceptance

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!

Read more: A Chronically (Ill) Boxset Binge.

 

October Link Up Party with A Chronic Voice

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7 ways to cope during a flare
In Chronic Illness

7 Ways to Cope During A Flare

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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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