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Flares: From The Invisible To The Visible
In Chronic Illness

Flares: From The Invisible To The Visible

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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. This June, I have used the prompts to discuss how flares can go from the invisible into the visible.

After a long, arduous night battling intense, crippling pain, I find myself standing in front of a mirror. Doing so, I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant crime scene investigator, I meticulously search for evidence discarded by the offender that is chronic illness.

"I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant CSI, I meticulously search for evidence left behind by chronic illness." Share on X

Sure, I observe the extremely ashen complexion, and the severely dark circles under the eyes staring back at me. Both easily attributed to yet another sleepless night and not the torture that my body continues to wreak upon me.

The Invisibility of A Flare

But alas, there are none. The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness, its accompanying symptoms and all its baggage often remain invisible despite the damage it inflicts upon its victim.  And for the person living with the scourge of a flare, it is bewildering that others can think we look well when continually sieged by debilitating pain.

"The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness often remains invisible despite the damage it inflicts upon its victim." Share on X

Flares come and go. And each time that one passes came the hope that it would be the last one. And the desire that never again would I have to utter the words, “This is the worst that I have ever felt in my entire life.” But flares always come back. They would always return, and the hope that had recurred after the flare diminished, disappeared along with it.  Yet again, forced to confront the ever-increasing presence of illness and disability in my day-to-day existence.  Along with this, is the need to accept the increasing lack of functioning as a part of my life.  

"They would always return, and the hope that had recurred after the flare diminished, disappeared along with it.  Yet again, forced to confront the ever-increasing presence of disability in my day-to-day existence." Share on X

The Traumatising Effect of a Flare

Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself. The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare.  And as such, living through one is both challenging and overwhelming.  

"The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare.  And as such, living through one is both challenging and overwhelming." Share on X

Day and after day living through the hell of debilitating pain, and unable to do anything but lie and endure such torture, you begin to feel helpless. You also start to believe that the flare will never end, and instead trapped in this seeming nightmare always.  The unpredictability, intensity, and relentless nature of such a setback can be scary, discouraging, and frustrating.  Its very presence is a stark reminder of the power that chronic illness yields in our lives. And reminding us that we do not always have control over our bodies. 

curled up in a foetal position because of pain
Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself.

Even after the flare dissipates, there is a trauma of having to live with new limitations, a result of a further loss of functioning; a byproduct of the prior exacerbation. A loss of identity. A loss of self-confidence. The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return. And haunted by the gains returned to me after a prolonged flare, only to have them snatched away again.

"The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return." Share on X

Becoming Disabled: My Body Responding to Frequent Flares

Because of the cycle of flares coming and going, my level of functioning and mobility, in particular, has changed. Steadily, worsening over time. Once, only relating to the label of being chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled.  It was now that as a result of the cycle of flares, the invisible slowly became more visible. 

"Because of the cycle of flares coming and going, I have steadily, worsened over time. Once, only relating to the label of chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled." Share on X

Flares: From The Invisible To The Visible

Where once I was unable to rely on myself, I was now unable to rely on my body because of the devastatingly debilitating effects of the symptoms that accompany FND. My new life came with a variety of paraphernalia associated with disability.

"Where once I was unable to rely on myself, I was now unable to rely on my body. My new life came with a variety of paraphernalia associated with disability." Share on X

Over time, I needed a variety of assistive walking devices. Different mobility aids for different mobility days; some days, a single cane will suffice in helping me get around. Other days, I find myself needing extra support, which a crutch fails to provide, so a rollator came into my life. And the terrible days, where my legs are being incredibly uncooperative, a wheelchair is needed. Going out, I began to need a disability badge in the case that my legs unexpectedly give way.  

While before my symptoms were invisible when I become more visibly disabled, however, I found it was me that became invisible.

Honouring My New and Ever-Growing Limitations

As the identity of ‘disabled’ made me feel invisible and even more isolated than before, I began to resent it.  I ignored what my body needed and did everything to blend in, to once again feel visible in the world.  The assistive devices that now played a prominent role in my life were left at home, discarded and redundant just as they had made me feel redundant, unable to live life like I once had.

"As the identity of 'disabled' made me feel invisible and even more isolated than before, I began to resent it.  I ignored what my body needed and did everything to blend in, to once again feel visible in the world." Share on X

It, however, only led to more falls as a result of a lack of support and balance such aids provided. All the extra walking needed to get around only resulted in more pain. And after returning home, overwhelming fatigue emerged, left unable to do anything but tolerate it.  I had to learn to accept the inevitability that flares go from the invisible to the visible.  And as such, had to acknowledge my need for such assistive devices. 

Being in a wheelchair usually leaves me feeling more alone and isolated than ever before, which made it harder to accept that I needed to use such assistive devices. Photo by Marcus Aurelius from Pexels.

Honouring the disabled label was a gradual process. Some days, I felt disabled, and days when I didn’t. The tag was an ageing-in sort of thing that took many years of being sick and living with FND.  Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them. 

"Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them." Share on X

Hoping That The Label Will Become Only A Small Part of My Life

The severe debilitating effects of a flare, and the resulting disability it causes often feel that it plays a significant and prominent role in my life. At times it feels that the diagnosis defines me, and the rest of my life pales into insignificance. Even more so, during a debilitating flare, or on the awful days, which there are many.

I hope for the day when illness and disability becomes only a small part of my life, as often and especially during times of a flare it can feel like the most significant part of life!

So, I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I’m not in pain.  Or those times where the other symptoms are quiet in the background. And the times when I don’t have to always worry about my health; or concerned when the symptoms will next suddenly appear.

"I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I'm not in pain, or where the other symptoms are quiet in the background." Share on X

I am hoping that over time, despite the disability that has begun to impact every facet of my life significantly, that it will become just another part of my life. I hope that it will become a small part of my life; even on the bad days.

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The Reality of Living Through A Flare
In Chronic Illness

The Reality of Living Through 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.  This March, as I am living through a debilitating and challenging flare, I am going to write about the reality of living through one.

Holidays! How we love and look forward to them! The ability to escape our everyday lives; the capability to evade the monotony and mundane aspects of our lives. A welcome break from our lives, especially those aspects that we don’t like or have trouble accepting.

When living with a chronic illness, oh how we wish we could escape our bodies; a wish that we could break away from the crippling and disabling symptoms that affect every facet of our lives. And never is this more true, when amid a cruel and torturous flare.

When living with a chronic illness, oh how we wish we could escape our bodies; a wish that we could break away from the crippling and disabling symptoms that affect every facet of our lives.

The capacity to run away and leave behind our weak, frail and pain-riddled bodies would be something that we would welcome in a heartbeat. But, this is merely a fantasy; something that could only happen in the imagination behind books or films.

During A Flare There Is Only Staying and Enduring

The reality is that we are trapped; imprisoned with no such ability to escape or run away.  Our bodies become prison cells shackling us inside its dark and murky walls, unable to move far, and although flares come and go, it still feels like a life sentence us, an innocent victim, as the realisation that these flares will reoccur time and time again. 

There is no break or respite when living with a cruel and relentless flare.  No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms.  

"There is no respite when living with a cruel and relentless flare.  No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms." Share on X

There is a lot of staying when living through a horrible and debilitating flare. Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms.  But during a flare, there is a lot of staying inside our homes, our sanctuaries, places that we deem safe even when illness and its symptoms invade them. 

curled up in a foetal position because of pain
Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms.

Pain and illness have a habit of making our lives shrink as for days, weeks, and sometimes even months, we are unable to venture far from our homes if at all.  As such, do not have the opportunity to see other people apart from those we live with, leaving us feeling isolated. 

How we wish during a flare that the exacerbating symptoms would leave. Still, they prove to be stubborn, refusing to go, staying in our lives for the foreseeable future at least.

During A Flare, There Is No Doing

During a flare, there is no doing. No, there is only suffering and enduring severe and continuous symptoms. The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life.  And as such, resting, waiting for the symptoms to subside and the flare to pass becomes the new norm.

"The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life.  And as such waiting for the flare to pass becomes the new norm." Share on X

In my years of living with a chronic illness, the only doing during a flare is finding new ways to do things without exacerbating the already debilitating symptoms. We do what we can, but it can often feel like it is not enough. And as such, we no longer feel productive, or someone who is doing. We think, therefore, that we are a burden.

black and white photo of woman staring out of a window
During a flare, we must learn new and inventive ways to do things without exacerbating the already severe symptoms.

During a flare, it certainly feels that the days and weeks filled with nothing or at least the bare minimum.  No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving.  

"No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving." Share on X

Not Being, Just Existing

Even when living with the constant and persistent presence of chronic illness, we still manage to carve ourselves an identity outside of it.  We know who we are, and can define ourselves beyond that of someone living with a long-term health condition. 

When amid a severe and debilitating flare it can feel that we are barely being, only existing. Photo by Bianca Salgado from Pexels

But when living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it. Our being becoming limited by the severe, debilitating symptoms, and left unable to the things that everyone else often takes for granted. 

"When living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it." Share on X

…But Starting Towards Targeting Goals

But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison; a prison constructed by chronic illness and particularly the repeated flares.

"But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison." Share on X

In my experience, confidence can take a real battering when a severe and impairing flare. During these times, I am unsure and apprehensive when doing something or going somewhere, which before came readily and with no hesitation. But during a flare, or for some time after it, I become anxious as I am afraid that doing so will trigger another onslaught of unpleasant symptoms.

woman wearing distressed denim jeans sitting down inside room
When living with chronic illness and burdened by a flare, we can lose some of our confidence and become unsure and apprehensive about our everyday life. Photo by Imani Clovis on Unsplash

And so, I set myself small, little targets to achieve certain things. Particularly, visiting such places that I have found to trigger symptoms such as dizziness or those places where I’ve experienced falls. When I meet these targets, I reward myself, although the real reward is the increased confidence it gives me.

The Knowledge of Future Flares Weighing Heavily On My Mind

Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last. The weight of the knowledge that this condition is my life now, and seeing future impending downturns is burdensome. Such insight can be frightening and discouraging; we want normality and freedom from the confines of pain and illness.

I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to. But I also know that I will survive because I have done before and able to again.
"Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last." Share on X

It is further discouraging with the knowledge that such downturns are becoming more frequent and severe. Such awareness is bothersome and frightening. However, when weighing all the evidence from previous exacerbations in symptoms and functioning, I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to.  But I also know that I will survive because I have done before and able to again.

"I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to.  But I also know that I will survive because I have done before and able to again." Share on X
The Reality Of Living Through A Flare
March Link-Up Party with A Chronic Voice
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In Chronic Illness

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

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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.  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
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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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