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Finding Beauty in Life With A Chronic Illness
In Chronic Illness

Finding Beauty in Life With A Chronic Illness

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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. 

As it’s February and generally considered the month of love, I thought I would use this month’s prompts to discern ways we can find beauty and love life  despite the significant cost that chronic illness has on our existence. 

Adjusting

Adjusting: Verb. Alter or move (something) slightly to achieve the desired fit, appearance or result

The first step to rebuilding life in the wake of a life-changing diagnosis is acceptance. Only by accepting the diagnosis can we then move forward and build a happy and content life despite the unwelcome changes that accompany chronic illness.

"Being diagnosed with a chronic illness is akin to being given new puzzle pieces that we have to learn to fit into our personal jigsaw." Share on X

After acceptance, we can then make adjustments to make room for chronic illness into our new life. Being given a diagnosis of a long-term health condition is akin to be handed new jigsaw pieces. These new jigsaw pieces don’t initially fit the canvas that makes up our lives. Therefore, adjustments are required to install these pieces into our life puzzle.

Being diagnosed with a chronic illness is like being handed new puzzle pieces that we have to attempt to fit in with our life.

Life with a chronic illness requires constant adjustments. Adjusting to a never-ending list of symptoms as new ones develop. Adjusting to new medications and the awful side-effects that accompany them. And adjusting to the new and ever-worsening version of ourselves.

"Life with a chronic illness requires constant adjustments. Adjusting to symptoms, new medications and the awful side-effects that accompany them. And adjusting to a new version of ourselves." Share on X

Adjusting to a new identity, the expectations for ourselves all in order to find a new normal.

Hoping

Hoping: Verb. Want something to happen or be the case

When first diagnosed with a chronic illness, we hope that it will go away. That one day we will wake from a deep sleep, and everything will go back to what it once was.

When we realise and accept that this is merely a pipe dream. And after we had made necessary adjustments to find a place for our new diagnosis, hope evolves into something else.

Although we know a cure is never going to materialise, that we will never get better we never stop hoping nevertheless. We hope that there will be improvements, a hope that life will get better regardless of the permanency of illness.

"Without a promise of a cure, we don't stop hoping nevertheless. Every morning, new hope is born. Hope that medication will suddenly alleviate our suffering. Hope that today, our symptoms will not hinder our plans." Share on X
hope spelt out in wooden scrabble tiles
Every morning, new hope is born

Every morning, new hope is born. Hope that today will be the day when the medicine prescribed will suddenly work wonders and alleviate suffering. A hope that although the symptoms are a constant comrade, that their presence will not hinder our plans.

Sometimes it may seem that hope is a wasted endeavour; wishful thinking that may have little chance of becoming a reality. Hope however is much more powerful that we often realise. It allows us to see a light when surrounded by darkness; the light informing us of better days ahead. Most importantly, hope is the thread that allows us to hold on and survive the worst of days.

"Hope allows us to see the light despite being surrounded by darkness; it informs us that better days are ahead, allowing us to be able to survive the worst of days." Share on X

Surviving

Surviving: Adjective. Continuing to exist; remaining intact

When first being diagnosed with a chronic illness and confronted with symptoms, it is tempting to push through and continue as if they don’t exist.

"Pushing through the symptoms of chronic illness can often do more harm than good. Sometimes we need to allow ourselves a 'day of survival.'" Share on X

Often, however, to do so does more harm than good and only serves to prolong the flare. What we need is to allow ourselves a ‘day of survival.’ To let ourselves succumb to the debilitating and unpleasant symptoms and to allow ourselves a day of rest for self-care and recuperation.

a hot cup of tea and a pen resting on top of a journal resting atop a duvet
On the worst days often the kindest we can do for ourselves is to allow us a day of survival for much needed rest and recuperation

A day of recuperation will not be the same for everyone and depends on the preferences of the individual and what the symptoms will allow us to do. But it may include a Netflix binge-watching session, or gaining comfort from a favourite book. Or even the luxury of a warm bath or shower has the power for a moment of indulgence.

It can be a difficult transition to make, especially if we are used to living a busy and hectic life. But when living with a chronic illness, there are days when we are surviving instead of living. Days when we are moving forward at a snail’s pace. But we also learn that this OK,. Allowing ourselves to slow down we are best able to appreciate and be grateful for the positive things in our life, for those that chronic illness cannot touch.

Befriending

Befriending: Verb. Act as or become a friend to (someone), especially when they are in need of help or support

To find beauty and love life again despite the darkness and ugliness that chronic illness unveils it can be useful to befriend our condition. It’s never going to become your best friend, and you will find yourself in many arguments with it, but is going to be something that we will have constant interactions with every day for the rest of our lives. To live a more successful and gratifying life despite chronic illness, we need to better understand it better.

hands making a love heart sign in front of a sunset
We need to learn to befriend our conditions and ourselves for a life living in harmony despite a chronic illness

As such, it’s essential to build an amicable relationship with our illness and our body. To set boundaries, so that we do not make foolish mistakes and trigger or make worse the symptoms that accompany our new permanent ‘friend.’

"Befriending chronic illness allows us to be able to set boundaries and not make mistakes which could trigger our make worse the symptoms that accompany our new 'friend.'" Share on X

In order to live well and in harmony with a chronic illness, therefore, we need to learn our limits, and to know what we can and cannot handle before symptoms makes their presence known.

abstract picture of love spelt out in block letters

And to know and understand what a ‘bad day’ and a ‘good day looks and feels like for us. If we are in the midst of a bad day for example, and we are aware of that, we can, therefore, take steps to better look after ourselves and prevent it from getting even worse.

By learning to befriend and make peace with this new companion in life, also makes it easier to understand and accept the limitations they bring. By understanding and knowing what is happening and why I’m better equipped in handling the emotional fallout.

It is essential for our well-being that we listen to our bodies and that to what it is trying to tell us and act accordingly. Becoming friends with illness is not a cure, however, but doing so will make life with it much more manageable. And allowing us to spend less energy so we can use it on more enjoyable pursuits.

Also, we also need to learn to befriend ourselves in the wake of a diagnosis. To allow us to get to know the new person that the diagnosis forces us to become, and the one who is different to whom we were before. We are of course the same person we were before, but the changes and challenges chronic illness presents we feel different. Befriending the new us allows us to treat ourselves with compassion and love.

"In the wake of a diagnosis, we also need to befriend this new us that chronic illness forces us to become, and different to whom we were before." Share on X

Awakening

Awakening: Noun. An act or moment of becoming suddenly aware of something

After first being diagnosed with a chronic illness, we have a new awakening to the knowledge that life will never be the same. To awaken an understanding of this new diagnosis and how we can feel as well as possible in this ‘new’ body.

"A sudden diagnosis awakens the knowledge that life will never be the same. And by doing so, we need to understand this diagnosis and how to feel well in this 'new' body." Share on X
i am grateful ceramic plaque in the shape of a love heart
Allowing ourselves to feel gratitude awakens positivity

Living with a chronic illness is undoubtedly difficult. There are often many more downs than up. Despite this, however, life with a chronic illness awakens the capability to practice gratitude.

The bad days, which are plenty when living with a chronic illness makes us appreciate those rare days even more. Practicing gratitude and becoming consciously aware of everything we are thankful. Gratitude reintroduces light into our life where chronic illness had previously trapped us in the dark.

"Living with the many limitations that accompany chronic illness, however, awakens a new appreciation and gratitude for the rare good days that we do get to experience." Share on X

And practicing gratitude helps to change a negative mindset into a positive one, allowing us to see and appreciate the beauty in life. Becoming more positive has an apparent beneficial effect on our mental health, and allowing for developing more appropriate coping strategies.

These are just some ways to find beauty and joy in life with chronic illness. How do you see beauty beyond a life with chronic illness? Feel free to share your ideas in the comments.

February Link-Up Party With A Chronic Illness
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In Chronic Illness

Embracing The Warrior Inside

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What does it mean to be a warrior?

What images evoke when you think of the word warrior? 

Warrior (noun)

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

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

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

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

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

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

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

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

The Problem with Words Such As Fighter, Battle and Warrior

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

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

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

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

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

Are We Warriors?

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

View this post on Instagram

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

A post shared by Rhiann Johns (@serenebutterfly) on

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

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

Embracing The Warrior Inside

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

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

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

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

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

The Comfort that Being A Warrior Has

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

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

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

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

Embracing The Warrior Inside
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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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Being A Prisoner To Chronic Illness
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Being a Prisoner to Chronic Illness

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Being A Prisoner to Illness

Loneliness. Isolation. Solitude.  Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.

Not fitting in

"Loneliness. Isolation. Solitude.  Three words that I would describe life with chronic illness." Share on X

Having experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years.

what-a-puzzle-to-the-rest-of-us-is-belle

Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

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The Limiting of Symptoms

It’s difficult living with a neurological condition that affects your perception of the world. Some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.

Feeling pushed out and neglected because of symptoms of chronic illness

We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘All By Myself,’ and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

bed-black-and-white-girl-window-favim-com-178300-8288

I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Prisoner to Chronic Illness

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

"Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life." Share on X

During our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer.  As much as I would like to get out of my ‘prison’ and participate fully in life, it is incredibly difficult.  It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.

At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.

Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!

pexels-photo-226634

Finding Companionship Amongst Solitude

Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations. After being stuck inside the house for so long, it seems that we have forgotten how to converse.

"Netflix is a welcome distraction from the silence and solitude that surround us." Share on X
pexels-photo-265685

The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.

pexels-photo-102159

It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.

"Social media helps with the loneliness and isolation that chronic illness can bring." Share on X

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).

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In Chronic Illness

Product Review: Quell Wearable Pain Relief Technology

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I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company. 

Rewind to the end of the last month, and some of you may remember the blog post I published regarding my personal struggles with chronic pain; how living with constant pain has begun pass for attempting to survive catastrophic and torrential storms.  I have made many attempts to try and ‘fix’ the excruciating pain which radiates throughout my legs, but nothing has worked, and the prescribed medications that I have so far tried has done little to relieve the neuropathic pain.  This year, after seeing a specialist in London, a visit to a chronic pain clinic has now been put in motion, but after months of wrestling with intense pain, I am in need of some respite from it since yesterday!

Then in August of this year, I was contacted by Chronic Illness Bloggers who asked if I was interested in reviewing the Quell.  I had researched many products which claimed to alleviate chronic pain, however, in many of the cases, the wearable technology is worn at the site of the pain which raises questions on where to place the device when the neuropathic pain radiates throughout both legs.

But Quell solves this problem, as no matter where in the body the pain originates the Quell is worn on the upper calf to stimulate sensory nerves, tapping into the body’s natural pain relief response.  In other words, by stimulating these sensory nerves in your calf, sends a message to the brain to block pain signals, which in turn leads to widespread pain relief.

Screenshot_20171022-163706

What is the Quell? 

The Quell is an entirely safe, natural and drug-free pain relief device that is used to manage chronic pain.  It is, therefore, safe to wear 24/7 for round the clock pain relief, for those like myself who suffer from constant chronic pain, and suffers from disrupted sleep because of it.

[Tweet “The Quell offers a safe, natural and drug free way to manage chronic pain.”]

The device sits inside a pocket of the adjustable exercise band (also included in the Quell starter pack) and which an electrode strip is snapped merely on at the back of the small, thin device.  These electrode strips (which I received a month’s supply of) are placed onto the skin of the upper calf, approximately 1 to 2 inches below the knee and once the band is fastened in places with velcro and the device is switched on you are ready to go!

Calibrating the Quell 

However, before using the Quell for the first time and to continue receiving the optimal pain relief for your personal needs, the device needs to be calibrated.  This quick and easy step is done by sitting with your feet on the floor and knees bent at a 90°.  Then to begin the calibration, you hold the button on the device until the lights start running back and forth.  Release the button and then any time you feel a slight tingle, press the button.  The calibration is complete when the lights on the device go off, and you are then ready to start full therapy sessions.

This step could not be quicker or easier to complete! In fact, I calibrated my Quell device before leaving on a four-day break with a local bus company with my Mum.  The pain had been so severe that I was concerned about the impact it would have on my time away, especially with the number of trips on the itinerary.  I was relieved when I received my device on the day before we were due to leave, in the hopes it would have a positive effect on my pain.  It didn’t take long at all to calibrate the device, and it was then ready to use while we were travelling to our destination on the bus!

Is the Quell easy to use?

In the simplest terms, yes, it is straightforward to use, and even those who may be technologically challenged would find the Quell uncomplicated!  All that is required is to put the device, press the button to switch it on and then leave it and go about your day as usual! The Quell delivers therapy sessions for an hour, then gives you a break for 60 minutes, before starting another cycle automatically (there is also a Quell app which can be used to change the frequency of the sessions).

There are four different options: the standard is a therapeutic session that lasts 60 minutes, followed by an hour break before restarting; manual in which again has a 60 minute therapy time but you have to start following sessions manually.  A low therapeutic dose is a 30-minute session that restarts after a 60-minute break, and a high therapeutic treatment which involves a 60-minute session and restarts after a 30-minute break.

After four therapy sessions, it will buzz at the end to remind you to let the skin on your leg for a breather.  If you feel the need to continue receiving sessions, however, as I had done when the pain was at its worst you can switch the device to the other leg.

It may be necessary, as everyone’s experience of pain is different, and so Quell has designed the device as such that you can also increase or decrease the intensity of the therapy that the device delivers.  To do this, you hold the button on the device down until you see all six lights flashing.  Keep holding until the intensity reaches a level you are satisfied.  To decrease the intensity, press the button once.  To switch the device off completely, press the button four times.

The App

As previously mentioned, the Quell also works with an app that is available on smartphones (available in Apple App Store and Google Play). All in all, I much prefer using the app as it saves so much time in the mornings when I want to start using the device as part of my pain management.  All I have to do is press the start button and voila! However, while I was away, I did appreciate having the option to operate the device manually as I wanted to save precious battery life on my phone to take plenty of pictures of our trip.

Although, to my surprise, when connecting the Quell via Bluetooth to my phone in the night to track my sleep, it didn’t use as much battery life as I was anticipating (great to know if you rely on your phone as much as I do!).  I read other reviews in which they had used the app for Apple devices and had a feature that reminded you when to change the electrodes (which last approximately 2 weeks) however this particular feature isn’t available on the app for Android smartphones, and which hopefully the developers will rectify.  Another aspect that is sadly missing from the Android app is seeing the level that the intensity is currently at; no numerical data available to know how high or low the intensity is at which makes adjusting to your preferred level in future sessions difficult.

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The Dashboard which controls the device

The app is also helpful as it notes how many regimens you have had that day (Quell recommends that you have at least 2 to 3 full therapy sessions for the first month). The Quell app also lets you know the amount of battery life left on the device, so you know if and when it needs to be recharged.

An added benefit is that it can also keep a record of how your pain has been over the previous 24 hours (asking to rate your pain, how much it has interfered with sleep, how much it has interfered with activity levels as well as mood).  It also has a feature which enables you to track sleeping patterns and activity levels all of which are excellent indicators if and how Quell is helping your pain.

My Personal Experience of Using Quell 

To note, the Quell does not work right away for everyone, and sometimes it can take weeks of use until you start feeling the full benefits of the device.  However, after hours of wearing the Quell, I began to feel a reduction in the severe pain I had been experiencing during that time.

It is not a magic cure and pain is still a constant aspect of my everyday life. There are still days, however, when I am in agony due to neuropathic pain but it helps to take the edge off the pain, and the Quell is now a permanent feature in my pain management toolbox.  When you have been in constant pain as long as I have even a little relief is welcome.

[Tweet “The Quell  is now a permanent feature in my pain management toolbox.”]

I have found that the Quell has been much more successful in alleviating the joint pain I have been experiencing in my knees.  It is not a pain we know the reason for, although I suspect it is as a result of all the falls I have had over the years, as I often fall onto my knees.  If for whatever reason, I am not able to use the Quell, I notice that the pain in both knees exacerbates.

The first night have I started using the Quell; I decided to wear the device overnight to track my sleep, especially since the pain has a significant impact on my ability to sleep, sometimes only managing a couple of hours.  So, imagine my surprise when I checked the app and found that I managed 8 hours and 24 minutes of precious sleep!; more amazing since I was also sleeping in a strange bed.

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A great night’s sleep has been a welcome side effect from using the Quell.

At first, I was sceptical in wearing the device, as I often wear slim-leg jeggings, and wondered whether I would even be able to pull them up over the device.  But this proved not be an issue at all as the Quell is slim-lined in design.

Then I worried that everyone will notice this strange looking device strapped to my leg, leading to many questions about what it was and why I was wearing it.  Living with an illness and subsequent disability that has become more visible, I get asked a lot of questions.  But we are all more than our illness and disabilities, and therefore wish that people see beyond our physical limitations.  However, as the device is slim it was less noticeable than I had anticipated and during the month I have worn it, nobody has seemed to notice the device strapped to my leg.

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Even wearing slim-leg jeggings, the Quell is hardly noticeable!

The only problem I encountered was when having to swap the electrode to the other leg, allowing breathing room for my skin, which proved difficult as I was out all day on trips and I was wearing my usual slim-leg jeggings.

Another positive of the Quell is for its incredible battery life.  Considering that I am using it for the majority of the day, and overnight, the battery lasted for around a week.  The Quell came with a charger adapter and charger cable and has only taken approximately 2 hours to recharge.

What does a Quell Session feel like?

It doesn’t hurt at all and just feels like a vibrating and tingling sensation on your leg.  With my neurological condition, I also experience constant trembling feelings and have found that the vibrations and tingling reactions the device produces do, in fact, worsen the trembling which is unnerving when walking while out of the house.  Most people report forgetting they have it on but because of this, this is a rare occurrence for me.

I have also found that as someone who suffers a lot of falls due to my neurological condition, I have had issues with accidental disconnections with the Quell device, and have needed to excuse myself to the bathroom to reconnect the device to the electrodes and to resume a therapy session.

Accidental disconnections is also a regular occurrence when I wear the Quell overnight. Many times I have discovered the device has failed to record the length of time I have spent asleep as during the night as the Quell has disconnected (although I am one of those persons who is forever tossing and turning!)

Although the Quell is no cure for the constant pain, I experience I have found I have been able to do more than I would otherwise.  During our time away, I found that I was able to walk further and do more than I was anticipating before leaving for our trip.  Also, I have noticed that I have been able to increase the time spent on the bike at the gym.  Admittedly, I have experienced payback of pain afterward, but it hasn’t been as bad before using the Quell.

Cost of the Quell 

The main drawback to the device is the price.  At $249 (around £197) it is an investment.  However, the company does offer a 60-day money back guarantee, so you are able to recuperate the cost if the product isn’t suitable or if it just doesn’t work out for you.

There are also additional costs to consider, as previously mentioned the electrodes need to be replaced every two weeks; for a month’s supply, it costs $29.95.  With the starter kit, I was sent a one month supply of the standard electrodes and a month supply of their new sport electrodes which are designed to absorb moisture so are perfect for those who exercise regularly or play sports.  I have found that the sport electrodes do last much longer than the regular electrode.

I found that the blue gel on the regular electrode became tatty quite quickly, although they still have lasted the full two weeks before needing to be replaced.  Admittedly, to save further cost, I have pushed one to three weeks of use.  Although I wouldn’t recommend it as the Quell felt like a painful stinging sensation, instead of the usual buzzing feeling, and was probably because the electrode became worn out.

The band also gets worn and stretched quite quickly, and the velcro loses its strength, and sometime in the future will need to be replaced, which is yet another cost!

Final Thoughts 

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Despite the shortcomings that I have experienced with using the Quell, I still think that the Quell is well worth it; it has become my favourite tool to help manage my chronic pain.  If someone were to ask my opinion on the Quell, I would have no hesitations in recommending it for someone living with chronic pain.  Quell offers a drug-free approach to pain management, which I appreciate as I often have stomach cramps after taking pain medication.

Like with anything, I know that it would not help everyone, but with the 60-day money back guarantee, it’s definitely worth trying.

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