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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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In Chronic Illness

The Lessons Learnt When Travelling

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Sheryl, as well as sharing her own stories about living with a chronic illness, is a great support to other bloggers and writers.  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 help others gain insight into travelling when living with a neurological disorder.

Travel and visiting new destinations is one of the great joys of life.

Whether it be for a few days or several weeks, travel allows us to escape our lives, allowing the pursuit that of which is important to us. Or the freedom to seek out activities that we have always wanted to try but never found time to accomplish.

Living with a neurological condition, however, can make travel exceptionally difficult.  Living with constant and unrelenting symptoms, especially those which can be unpredictable, can often force you into a bubble; a little prison where we’re happiest in the safe and familiar surroundings of home.  Home is secure, like a security blanket. Although the symptoms are incredibly unpleasant, it is easier to endure behind the closed doors of our homes. It’s safe, but it’s not living, is it?

"Our symptoms are often easier to endure when at home amongst the comfort and familiarity of home." Share on X

If we are to endure the persistent and tenacious symptoms everywhere, then why not do so amidst the unknown and breathtaking scenery of foreign lands.

We are sick, and thus can be ill anywhere, so why not travel?

If I am to be sick, then I can be sick anywhere.

That’s why I decided to step outside the comfort zone of my familiar surroundings.  I chose to live.  To live with the symptoms of this neurological condition instead of merely enduring them.

We have found cruising the most accessible and enjoyable way of travelling while in the company of a neurological disorder. And so a love of cruising began.

[Tweet “I have found the cruising offers the most accessible and enjoyable way of travelling.”]

cruise ship anthem of the seas docked
Anthem of the Seas

That is not to say, that it has become any straightforward, however.  There is always some anxiety and trepidation before embarking on our travels.  The fear of the unknown; the unknown of when we will experience a severe flare in our symptoms.  The uncertainty of whether we will manage to leave our hotel room. The fear that pain and other symptoms will dictate our travels just as it does every day while at home.

Currently, I have been experiencing a severe chronic pain flare.  So intense, that I have found myself crippled on the floor of my bathroom, retching with the intensity of it. So the worry of travelling while amid such crippling pain began.

Lesson Learnt When Travelling: My Strength and Resilience Despite Illness

However, I realised that to defeat this recent attack of chronic pain and the accompanying anxiety; I need to look back and remember the previous times I have been on a cruise. And need reminding of the coping techniques that helped me endure chronic pain, and the other problematic symptoms while being in uncertain and unfamiliar surroundings.

This year marks my fourth cruise. By looking back to my past adventures at sea, I can identify what helped manage and control my symptoms before so that I can put these same arrangements in place.  Already, this has involved an appointment with my GP for a prescription for strong painkillers to manage the chronic pain while away from home and motion sickness tablets. Not only do they help ease nausea caused by sea-sickness, but they can also help reduce the severity of the dizziness and attacks of vertigo that I frequently experience.  And with chronic pain comes painsomnia and so I have bought lavender and chamomile pillow spray to help me sleep.

"By reminding myself of the strategies that helped manage my symptoms, I can put these in place again."] Share on X
feather down lavender and chamomile pillow spray
Lavender is one of my favourite essential oils to help me sleep when I’m experiencing the dreaded painsomnia

Lesson Learnt When Travelling: The Power of Pacing!

When living with a chronic illness, one of the critical techniques in our self-management toolbox is pacing.  Chronic illness affects our energy levels, and thus we only have limited battery life. By learning how to space out activities, we can learn to stay within the limits of what our bodies can handle without exacerbating our symptoms. Or before running out of battery life altogether.

Pacing, therefore, is an essential coping technique when on holiday. And away from our daily routines and behaviours, especially as many holiday activities may deplete our already exhausted battery levels.  Jennifer, from The Health Sessions, recommends for every active-day we follow this with one day of rest. Doing so allows our bodies to recover between energy-consuming activities. When on a cruise, however, pacing can be awkward as we are not in control of the itinerary.  It is crucial that we are mindful of our limitations and not to exceed them, spoiling the remainder of our relaxing time away.

"For every active day follow this with one day of rest to help manage our energy." Share on X
battery life low mobile phone
With fatigue being a common symptom of chronic illness, it means that we only have limited battery life and one which gets depleted quickly if we don’t pace ourselves

Lesson Learnt When Travelling: The Need For Surrendering to Symptoms

As much as pacing can help manage our symptoms, however, we are more than likely will still experience flares.  If so, we need more than ever to surrender and take care of ourselves. Yes, even if it does mean missing out on specific events and activities that our holidays may have on offer.  I know from experience that this can be difficult, and we tend to criticise ourselves for missing out. Instead, we should be congratulating ourselves for even managing to get away from the security of home. And for not letting chronic illness make a prisoner of our own lives.

Travelling with chronic illness can sometimes mean surrendering to it; finding ways to make whatever we’d like to do on holiday manageable for ourselves and our weak bodies.

"It is important to find ways to make whatever we like to do on holiday manageable for ourselves."] Share on X

Lesson Learnt When Travelling: To Go With The Flow

Travelling with chronic illness also means learning to go with the flow.

Change and not knowing what to expect can be difficult when living with a chronic illness because it’s the not knowing what to expect that makes it much harder to anticipate, plan and manage our symptoms.  Therefore, perhaps not making concrete plans may be of some use when on holiday and instead take part in the activities and events on offer when we know we can enjoy them.

"Not knowing what to expect makes it harder to anticipate, plan and manage our symptoms." Share on X

Travelling Helps To Improve Ourselves

It may sound that travelling while living with a neurological disorder is more trouble than it’s worth.  In my mind, however, and despite all of the problems, it isn’t.  Travelling offers the opportunity for us to improve ourselves.  Whenever we venture outside our comfort zones and visit places we’ve never been before our world expands and our eyes open to new possibilities like never before.  Travel, especially when living with a life-long condition allows for us to learn things about ourselves, our needs and capabilities that we may never have known otherwise.

In my four years of cruising, I have learned that the more I do so, it also improves my aptitude of being away from home, despite how uncomfortable it can make me.

Chronic illness can rob us of many things, but we should not let it rob us the enjoyment and excitement of new adventures.

"Chronic illness should not rob us of the enjoyment and excitement of new adventures." Share on X
Link Up Party with A Chronic Voice: Lessons Learnt When Travelling
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