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In Chronic Illness

A Christmas Wish-List of A Chronically Ill Girl

December 13, 2019 9 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. In keeping with the festive season, December’s post will be about what I would like for Christmas as someone living with a chronic illness.

Ah, the festive season is finally among us. I am sure everyone is busy getting everything ready before the arrival of Christmas Day. The shops are bustling as we search for that perfect present that exquisitely reflects those crucial people in our lives.

Also, it is the time of year when we note everything that we would like to receive from those closest to us. Those material items that we most sought after, in the hopes that they will somehow improve our lives. But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions.

"But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions." Click To Tweet

The truth is, that if we could swap all those Christmas presents that are wrapped under the tree in exchange for everything that chronic illness has taken away, then we would do so in a heartbeat. The most welcome presents being those which cannot be wrapped and placed under the Christmas tree.

Christmas baubles on Christmas tree with presents underneath — Often when living with a chronic illness, what we most want in the world cannot be wrapped and placed underneath a Christmas tree. Photo by **Oleg Magni** from **Pexels**

If such a person, like Father Christmas, actually existed then surely the most considerable request on our wish-list would be the restoration of our health and everything else it has taken with it.

"The truth is, that if we could swap all those presents wrapped under the Christmas tree for everything that chronic illness has taken away, then we would do so in a heartbeat." Click To Tweet

Living with the neurological disorder, FND has taken so much away from me. If such wishes were granted these are what I would wish for Christmas:

For Christmas, I Would Like Confidence

A loss of self-confidence is one of many hallmarks of living with a chronic illness. The persistent and debilitating symptoms are beginning to erode our already fragile confidence.

So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies. And as a result, we begin to establish a comfort zone, very often our homes – a place where we feel safe and secure despite the extremely debilitating symptoms.

A loss of self-confidence is one of many hallmarks of living with a chronic illness. And in its place is fear and anxiety, especially everything that is outside of our comfort zone.

Going beyond our established comfort zone, therefore, evokes fear and anxiety. And there is nothing more that evokes fear and anxiety than travelling.

"So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies." Click To Tweet

Although travelling induces excitement for many, for those of us living with chronic illness, it can have the opposite effect. For nothing, makes us go out of our comfort zones quite like travelling.

Being away from the familiar and the coping strategies that help us get through the difficult days can be scary. When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry.

"When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry." Click To Tweet

Travelling hasn’t been on the cards this year, but a trip away is forthcoming for next October. At the time of booking, there was excitement and anticipation. But as I have been experiencing worsening symptoms as of late, my confidence has plummeted. As a result, the thought of travelling and being away from my comfort zone fills me with dread and anxiety.

So, if it were so possible, I would wish for confidence for Christmas. Confidence and self-belief to help with travelling alongside the symptoms and consequences FND bestow upon me.

All I Want For Christmas Is Meaningful and Lasting Friendships

For me, the best part of Christmas is spending time with loved ones. And even better is the time spent visiting, spending time with and bonding with members of the family whom we may not get to see during the rest of the year.

black and white photo of woman staring out of a window — Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

It means so much to me as someone living with a chronic illness, loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

"Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone." Click To Tweet

One Christmas wish, therefore, would be to find deep and meaningful friendships with people I can be myself with, without judgement. To spend time with like-minded people, and bonding over shared interests.

All I Want For Christmas Is Warmth!

This morning as the cold and rain hit me as I stepped outside, oh how I wished for warmth.

Woman wearing white long-sleeved jumper holding hands out towards fire — Oh, how the cold and wet weather makes me wish for warmth, especially as it can often exacerbate already debilitating symptoms.

The Winter months, with its searing cold temperatures and lashings of heavy rain, can be difficult for this living with chronic illness and chronic pain. Why? Because such conditions increase the severity of many symptoms associated with chronic illness, and especially that of chronic pain.

And now as the freezing temperatures and icy cold rain has seeped right into my bones, I long and wish for warmth!

All I Want Is To Be Able to Cope

Recently has been a tumultuous time in regards to my health and life alongside FND. Everything has and feels like a struggle. Life lately has felt like it has been about merely surviving instead of living. But I don’t want my life to be like this. I want to live and to thrive.

Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave. For often, the coping strategies that once worked, for some unknown reason no longer do and my already weak legs are scrambling underneath the deep water in a bid to keep me afloat.

"Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave." Click To Tweet

To help keep me afloat instead of sinking below into the depths of despair and continued suffering. My wish for Christmas would, therefore, be appropriate coping strategies, those that work and will help to live and not just survive.

And Most of All I Want Is an Ending

Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives. The eradication of every symptom that accompanies it, having a profound effect on every facet of our lives.

"Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives." Click To Tweet

Unfortunately, however, life isn’t a Disney movie, and life rarely offers a happily ever after. There are no fairy godmothers or those with magical powers that can grant us this one wish.

I suppose, therefore, it is up to us, to find ways to live our lives in harmony with chronic illness. To discover effective coping strategies for ourselves and that help us to live and endure everything that pain and illness throw at us every day. And especially it is up to us to write our own story and to make our own ending.

In Chronic Illness

The Before and Afters Of Chronic Illness

November 13, 2019 6 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This November I am using the prompts to discuss the before and afters of life with a chronic illness.

Life is messy. It comes with many responsibilities and obligations, and as we become older, these only increase. One such responsibility and one that often is accompanied by stress and worry involve financial responsibilities that characterise adult life.

Becoming an adult, although exciting; the thrilling prospect of freedom also coincides with the realisation of the financial burden of everyday life. The daily life of being an adult. The sudden understanding of everything that needs paying for when a responsible adult.

The Debt Incurred By Fun and Spontaneity

When becoming an adult with a chronic illness, there is an added financial burden — a sudden and new responsibility for paying for all the paraphernalia that accompanies life with a long-term condition. When living with a chronic illness, medications need paying as well as aids to make life easier when symptoms become out of control, and so on.

But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken. Often there is an apparent reason for the sudden flare in symptoms or a decline in energy levels. Sometimes, there is no apparent reason at all, and are left speculating the reason for the unexpected presence of symptoms.

"But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken." Click To Tweet

When living with a chronic illness there is a hefty payback for every expansion of effort and energy. Often such a payback comes in the form of a severe and debilitating flare in symptoms.

There is now no room to be spontaneous and reckless with our time. Doing so doing can provoke and anger the symptoms that are always present. As much as we take delight in going out, there is, unfortunately, a payback of the effort and energy that the given fun had required.

Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back. The payback of every moment of fun and spontaneity is a debilitating increase in the symptoms that accompany such conditions.

"Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back." Click To Tweet

Plunging Into The Unknown Possibilities of The Future

We often like plunging into the unknown possibilities that the future offers. We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread. Those events and fun outings that we would once look forward to now induces fear due to the uncertainty that surrounds life with a chronic condition.

"We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread." Click To Tweet

We are unable to pencil in the dates when it would be most convenient for symptoms to appear; they do so with no concern or care for the plans made in advance. Instead, arrangements are made with no knowledge of how we are going to feel on the day in question. Or the state our bodies are going to be in on the day in question. Plans that should induce joy and excitement now only prompts thoughts of ‘what if.’

It can be exciting to plunge into the unknown possibilities that the future holds, but when living with chronic illness, however, it can trigger feelings of anxiety and fear due to the uncertainty that defines living with a chronic condition.

We look ahead, and instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering.

"Instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering." Click To Tweet

“No, you may not go to the ball!”

Ah, remember the blissful and carefree days before the existence of illness and its numerous symptoms? The many invitations that we’d receive to ask for our attendance to social gatherings hosted by friends or family. The opportunity to escape the monotony of a night at home; the promise that we will go to the ball.

Now, the future and the continued presence of chronic illness, the doors to such balls are firmly closed to us. Usually, we begin to be overlooked, no longer invited to parties because illness has forced us to cancel on numerous occasions in the past. Or, sometimes people believe that we will not be physically well to attend. Our fairy godmother no longer in existence, and no longer able to go to such festivities.

When living with a chronic illness we, unfortunately, don’t have a godmother to allow us to go to the ball!

Invitations that now arrive in this new present and continued future take the form of letters for doctors and hospital appointments. Those living with a chronic illness will know the difficulties of going out when plagued with disabling symptoms. At times, it can become so bad that the only time we do go out is to such appointments.

"The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out." Click To Tweet

The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out.

Organising Life Around The Changes That Illness Brings

The past, once full of spontaneity and life led on impulse becomes no more with the arrival of a chronic illness. The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations caused by this permanent new companion.

"The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations of chronic illness." Click To Tweet

Life now and in the future, are unable to cope with days crammed full of activity due to such limitations chronic illness inevitably brings. So we must reevaluate what is most important to us, and what we can do to organise our days into something manageable.

calendar of appointments - life with a chronic illness! — A life with a chronic illness needs careful organising – calendar often full of doctor and hospital appointments

To create a ‘new normal’ out of the broken and destructive pieces of our old lives.

Our calendars once crammed full with future parties, and all the invitations that asked for our attendance now erased. In its place, a carefully organised calendar detailing the many doctor and hospital appointments that accompany this new chronic life.

None of Us Knows What The Future Holds

Oh, the future which in the past seemed so bright and exciting. The endless possibilities that it once promised now seemingly lost forever. Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it.

"Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it." Click To Tweet

Still, there are a million questions and uncertainties that the future holds out in its hands. Even living with the certainty of illness, there are still endless possibilities to explore if only we find the courage to do so.

Yes, the possibilities might be sparse and limited due to the many limitations that lie in the wake of illness, but they do exist. And for that provides a glimmer of hope and promise.

The Before and Afters of Life With Chronic Illness

Life is often a series of before and afters especially when we experience something significant. When diagnosed with a chronic illness life becomes defined by the before and afters of life with chronic illness.

When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness. It is up to us to make the most of the unchangeable situation.

"When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness." Click To Tweet

In Chronic Illness

What They Don’t Tell You About Life With Illness

October 12, 2019 12 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For October, I have used the prompts to write about some of the lessons that chronic illness will show you. Lessons that incidentally nobody will warn you that illness will teach you.

“Patient’ defined as ‘a person receiving or registered to receive medical treatment.’ One that a person only identifies with when sick and in need of medical treatment.

When diagnosed with a chronic illness, a patient becomes a more permanent part of our identity. An identity that we gave to learn to juggle with many others. A new chapter of our lives, as we learn to wrangle new terminology and to learn to cope with unfamiliar symptoms.

Waiting While Living As A Patient and Learning What It Is To Be Patient

And as we become a patient, we also learn another definition of the word. Another explanation of ‘patient’ describes it as being ‘able to accept or tolerate problems, or suffering without being annoyed.’

Living with a chronic illness involves a lot of waiting and a need for patience.
Photo by **Lukas Hartmann** from **Pexels**

Because living with a chronic illness involves a significant time of waiting. You learn to wait and to wait with patience. It is a life consisting of waiting for symptoms and side effects to dissipate. It often means waiting for appointments to see doctors and consultants. For only then to spend a numerous amount of time waiting in hospitals for the appointment with the consultant to begin.

"Because living with a chronic illness involves a significant time of waiting. It is a life consisting of waiting for symptoms and side effects to dissipate. We are forever waiting for our lives to return to normal." Click To Tweet

Waiting with the hope that the new treatment recommended to us works, waiting to feel better. And waiting for our lives to return to normal, waiting, waiting, waiting.

But when the symptoms don’t disappear; becoming stronger and more persistent, we begin to part ways with hope. As symptoms worsen, becoming a prominent feature in our daily lives, and with it, the glimmer of hope dwindling, the cycle of grief begins once again.

Parting With Hope Of Returning To Our ‘Old Normal’

As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our ‘old’ normal.

We learn to let go; accepting that we cannot change what is happening to us. Or the future and the inevitable progression of illness and the worsening of symptoms. We can only prepare for what lies ahead but refusing to let go and surrender before the inevitable befall us.

"As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our 'old' normal." Click To Tweet

Nothing can prepare you for the destructive force that pain and other symptoms have on every facet of our lives. Illness dripping its poison into every corner of our lives. Nothing or no one can help you anticipate the misery that such symptoms cause, and the days where you want to give up. Unfortunately, there is no such handbook given on the day of a life-changing diagnosis. No such book is giving advice or instructions on how to cope and live with this new world of chronic illness.

No Alternative But To Persevere

Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere. When diagnosed with a chronic illness, they fail to disclose that persevering becomes a part of daily life along with pain and other disabling symptoms.

"Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere." Click To Tweet

Life becomes about persevering through the crippling effects of chronic illness to achieve your goals, despite the difficulty when being in pain all the time.

"Life becomes about persevering through the crippling effects of chronic illness. It's persevering through every horrendous flare and tough periods that chronic illness continually delivers."

There are endless moments of continuing through new treatments and the horrible side effects, while not knowing if it will even be successful. And it’s persevering through every horrendous flare and tough periods that chronic illness continually delivers.

"Life becomes about persevering through the crippling effects of chronic illness. And it's persevering through every horrible flare and tough period that chronic illness continually delivers." Click To Tweet

Self-Affirmations As A Weapon Against The Difficult Days

After a life-changing diagnosis, there is no one to tell you that to persevere and get through the tough days you begin to rely on self-affirming and motivational statements.

Bold and uplifting proclamations that say to the world ‘I can do it.’ These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity. A reminder that we had faced tough times before and came through, and we will do so again. They provide strength and reassurance when faced with a crisis, feeling weak and unsure.

"Bold and uplifting proclamations that say to the world 'I can do it.' These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity." Click To Tweet

It can be hard to find self-worth, loving yourself when chronic illness sweeps in stealing what gives your life purpose. Affirmations remind us that we are not to blame, helping to eliminate feelings of worthlessness that chronic illness can create.

Loving Life Within The Bubble of Pain and Illness

When diagnosed with a chronic illness, nobody informs you that you will begin to hate your life. The constant symptoms, and all of the unknowns that now exists it is hard loving this new predicament. It often leads to dissatisfaction with life, as the losses due to chronic illness increases. Illness brings with it many negatives, and as such makes it difficult to find any positives within it.

Self-acceptance is a daily struggle, as loving others is easy but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are.

"Self-acceptance is a daily struggle, as loving others is easy, but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are." Click To Tweet

To thrive and not merely to survive, finding aspects to love and find satisfaction within life with a chronic illness is essential. To find love for ourselves, we must begin to accept those traits that we do like about ourselves. Yes, there’s no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments – moments to love and cherish despite the misery that chronic illness inflicts in the lives of those affected.

"Yes, there's no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments." Click To Tweet

As a person who experiences many moments of adversity, they continuously teach me the meaning of the phrase ‘Tough times don’t last, tough people, do.”

A lesson that I am thankful I have learnt by living with a chronic illness.

In Chronic Illness

A Chronic Illness Edition of Snakes & Ladders

September 8, 2019 2 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I will be musing on how this chronic life is very much like playing a continuous game of the classic board game ‘Snakes and Ladders.’

Life With Chronic Illness Is Like A Game of Snakes and Ladders

Do you sometimes feel that you are winning in life; landing on the bottom rung of a ladder, climbing further and further toward success and fulfilment. But only then for life to take a sudden downturn. Landing on a snake and forced to slide downwards toward despair.

Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak.

"Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak." Click To Tweet

Unfortunately, during recent weeks, I have been finding more snakes than ladders in my chronic edition of the classic board game.

When living with chronic illness, and its numerous symptoms that affect us it can feel like continually finding the snakes in a game of ‘Snakes & Ladders’

Once again, the weakness and trembling in the legs have become worse. I have been finding myself on the floor, again and again, after my legs give way with no warning. Living with a neurological disorder is continually finding new bruises but having no clue of where they have come from, or how we arrived to develop them.

As such, I am also finding a significant decrease in my self-confidence. The weakness, debilitating trembling and the falls have made me afraid of my own body; no longer confident in its ability to keep me safe and free from harm. Fear causes tentative steps toward the unknown, toward unpredictability. And it is never-knowing when my legs will next decide to collapse from under me suddenly.

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The Anxiety That Accompanies Illness and The Fear of What Could Be

Going out with trembling legs, aware of the unpredictability of such symptoms, and recognising that my legs could suddenly stop working at any moment causes anxiety. A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen.

"A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen." Click To Tweet

The knowledge that the ‘what could’ happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built.

"The knowledge that the 'what could' happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built." Click To Tweet

Every Day Needing To Find Our New Limits

Time and time again, I have discussed how life with chronic illness never changes; every day feels like the day before. That living with chronic illness can feel like you are living your version of Groundhog Day. The truth is, however, that not every day is the same; symptoms can come or go, or they can remain stable or get worse. In regards to the symptoms that accompany the disorder with which we live, every day is a blank slate.

Able to do that thing today? No idea! Only by research can we tell our capabilities for the day ahead. Photo by Emily Morter on Unsplash

And as such, each day we wake, not knowing the limits or abilities that we possess, and the restraints that illness now poses. So every day requires researching what our body can handle and what we can and cannot do. Tentative and careful steps every morning as hasty research into the current levels of pain. Or the current rate of mobility. A ritual performed every day even with the dreaded knowledge that it could change within a blink of an eye. There is a relief when the research suggests low levels of pain and relatively good mobility. But on the days where the pain is crippling, and walking short distances is difficult, we face the day with dread and apprehension.

Inability To Enjoy ‘Dates’ When Suffering Disabling Symptoms

Living with such debilitating and limiting symptoms means that dating is on the last thing on my mind. And it even if it were, I often feel that nobody would be interested in me. I often feel like a burden and not good enough. Being stuck in the house the majority of my time, due to disabling symptoms, when I do go out, I like to think of the trips as ‘dates‘ from my prison cell.

Although I appreciate these ‘dates’, and the time away from home, I have been unfortunately struggling with them lately, not enjoying them as I once did. It is challenging to enjoy days out when legs are trembling so badly and feeling completely weak that they might collapse at any moment.

Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. Afraid that today will be the day when legs will give way and suffering a humiliating fall in public. It’s enough to make you want to stay inside the safety of our comfort zone where our ‘dates‘ can include watching a film on the sofa instead.

"Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. It's enough to make you want to stay inside the safety of home." Click To Tweet

Sometimes the only date that my fragile body and wobbly has the energy for, unfortunately!

And then there’s the overwhelming fatigue that such symptoms cause. The mere thought of going out even for a short while seems like being asked to climb Mount Everest. I was recently reading about the potential capabilities of energy recycling. A process where the energy that would otherwise be wasted and converting it into electricity or thermal energy -thereby enabling us all to reuse energy. It left me wishing that I could reuse lost energy which would allow me to do so much more than I can do currently.

"Oh, how I wish we could reuse energy something that would allow me to do so much more than I can do currently." Click To Tweet

There May Be Snakes Now, But There Still Will Be Ladders Too

As I recount on the journey of living with a neurological disorder, there have been highs and lows. Unfortunately, like when living with any long-term health condition, the lows have outweighed the highs. In this life of ‘Snakes and Ladders,’ I continually seem to keep landing on the snakes, causing me to travel further from the place I want to be. Despite this, however, I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes.

"I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes." Click To Tweet

September Link-Up Party with A Chronic Voice (Finding, Researching, Dating, Reusing, Recounting)

In Chronic Illness

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

May 14, 2019 12 Comments

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

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

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

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

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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.