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what if our imperfections are just gold-filled cracks?
In Chronic Illness

What if our imperfections are just gold-filled cracks?

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A few weeks ago I was contacted by a friend about an exciting community project in Cornwall entitled ‘We Are Enough; The Creative Yarn Bomb of Love.’  Its ethos is to raise awareness about mental health; to bring people together to share experiences and encourage self-expression through creativity.  All forms of creativity are encouraged such as knitting, crocheting, writing, painting or photography while also spreading positivity and kindness.  A project to help people who may lack self-worth to know that we are all good enough just as we are.

The project will culminate in May 2019 to coincide with World Mental Health Day with a massive yarn bombing, whereby spaces across Cornwall, its structures and objects will be transformed, covered with decorative knitted and crocheted material to promote and raise awareness about mental health. You can click here to find out more about the We Are Enough project.

My friend asked if I somehow wanted to get involved in the We Are Enough and I, of course, said yes.  It is a brilliant project, and I know so many people who have had experience of not feeling good enough and plagued with self-doubt and suffering low self-esteem as a result.  Due to poor manual dexterity due to the Functional Neurological Disorder I suffer from, I am unable to crochet and knit, so I thought instead I would put pen to paper (or fingers to keyboard) and share my own experiences of not feeling good enough…

I suppose I have had the feeling of not being good enough for a long time now; for far too long that I am no longer able to remember exactly when these negative self-beliefs began.

These beliefs became more evident when the symptoms become a more significant part of my life, mainly the dizziness and the problems they caused with being able to handle being in certain places such as buildings with high ceilings, for example.  I hated these symptoms and the limitations they placed in my life, being able to enjoy an outing to the cinema became increasingly difficult due to the severity of the dizziness and vertigo.  I didn’t hate these symptoms (and later the neurological condition) just because of the limitations, but also how these set me apart from everyone else.

[Tweet “I not only hate the limitations, but also how the symptoms set me apart from everyone else.”]

Being different and standing out from everyone else can be very lonely and isolating
Standing out from everyone else can be incredibly lonely and isolating…very often leading to feeling not good enough

These symptoms began in early childhood and stayed with me throughout my adolescence and beyond.  A time when any differences that set us apart from everyone else are more apparent, especially to those within our peer groups.  And unfortunately, these differences can lead to bullying and ostracisation, which is what I frequently experienced throughout my school years, especially during secondary school.

In my experience, it is one thing to think negative and demeaning judgments about yourself, but to hear them from other people only reinforces these beliefs and are once again enforced on this perceptual cycle of not feeling good enough. And every time we are ignored or not given an invitation on the latest night out, or party once again reinforces to ourselves that we are not good enough.  And as this perceptual cycle repeats, again and again, it is no longer a belief, but becomes our truth.

[Tweet “Continuously hearing negative judgements about yourself enforces the belief we are not good enough.”]

We can feel defined by our imperfections, whether they may be physical imperfections such as scars, or a perceived character flaw or like me, suffering from a medical condition that makes you different.  So much so, that we are unable to recognise the positive attributes that make us stand out, and unique to those who love us unconditionally.  In the past, I’ve gone on numerous courses, many of which worked on increasing self-confidence and self-esteem and part of this was to write a list of what we liked about ourselves.  Asking other people who are close to me, they could list many things that they liked about me. However, I struggled to come with one single item on the blank piece of paper.

Even now at age 32, those feelings of not being good enough has followed me through those turbulent years of adolescence and into adulthood.  At university, much like my school days, I lacked confidence, continually doubting my abilities, never satisfied that my latest essay was ever good enough, or convincing myself that I failed the exam I just came out of, although I never had any evidence to support these assumptions.

In today’s society, we are taught the value of being productive, and as such as someone living with a long-term neurological condition and unable to work once again reinforces this belief that I am not good enough, somehow unworthy of having beautiful things or the opportunity of good things happening to me.

I am imperfect, and the condition that is now a constant part of my daily life is somehow my most significant imperfection.   An imperfection that has caused significant cracks, and weakening every part of my life.  But, have you heard of the term Kintsugi?  Well, kintsugi is the Japanese art of repairing broken pottery.  Broken objects, such as pottery are often repaired with gold.  These imperfections or flaws are seen as a unique piece of the object’s history and which adds to its beauty.

kitsungi an art form that turns brokeness into beauty
The Japanese art form known as kintsugi turns brokenness into beauty

Beautiful isn’t it?  But why do we not see imperfections and flaws ourselves in the same way – as something as unique and adds to our beauty instead of something to be ashamed of, doing our best to hide them from others.  To see something that sets us apart as something to celebrate and be proud.  Yes, the symptoms of the neurological condition that I live with may make doing some activities such as going to the cinema as difficult but isn’t it the fact that I have refused to let it stop me from doing certain things that is a sign of my strength and what should be celebrated?

[Tweet “Perfection is a social construct and not a reality; no one is perfect.”]

The fact is that perfection is a social construct and not a reality; no one is perfect. We all have flaws and imperfections whether they may be real or imagined, but what does matter is what we believe about them.  We can tend to give these flaws with more power and importance than they warrant, believing that our imperfections somehow makes us less whole.  Less worthy. But in truth, we are all good enough just as we are.  And our flaws and imperfections are gold-filled cracks that make us unique and adds to our beauty, and not which diminishes our light within.

[Tweet “We believe that our imperfections somehow makes us less whole. Less worthy.”]

Remember, you are good enough just as you are.

To find out how you can get involved in the We Are Enough project from your own home too, go to QuietConnections.co.uk/We-Are-Enough/

[Tweet “In truth, we are all good enough just as we are.”]

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A Month of Life & Chronic Illness

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After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’

The prompts for this month are:

  • Adapting
  • Practicing
  • Realising
  • Celebrating
  • Inviting

Here we go…

After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms.  But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.

I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you.  But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition.  Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.

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Acceptance is a journey and not the destination.

In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years.  Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms.  I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.

In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy.  The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.

Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life.  It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.

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The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain.  Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances.  When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition.  But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.

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And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings.  But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!).  It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.

It is little victories like the theatre trip which I am celebrating this month.  It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives.  Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration.  I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.

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Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

To end, I think I would like to invite more opportunity into my life.  Perhaps, by expanding my writing beyond the blog.  Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know!  Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle.  Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know.  But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.

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2018: A Year to Cultivate Resilience

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Again, we have just bared witness as tour diaries turned the page over into a brand new year.  And as such, we begin to reflect on the previous year and make plans for the next.  With the best intentions, people make resolutions only to break them before the end of January.

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When living with a chronic illness, however, life becomes unpredictable.  Every day we wake up, never knowing how our bodies are going to behave that minute, hour or day.  We never know how we are going to feel one minute to the next.

As a result, making resolutions to us seems to be futile. How can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? By doing so, are we setting ourselves up for possible failure by making unrealistic expectations?

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Last year, therefore, instead of making such demands on my life, which due to my fragile body I may not be able to accomplish, I come up with a ‘theme’ for the year ahead.  One word that reflects how I wish to live my life and be a reflection of the type of person I want to become.  The chosen word is said to be a compass to help direct us to make smart decisions as well as a guide to the best way to live life day-to-day.

It is now my third year in choosing a word of the year.  In 2016 my chosen word was hope, and my word for 2017 was grace. 

I had been having a hard time, however, of choosing a word to help direct how I wanted me and my life to become.  Inspiration came this morning when the weakness in the legs consumed me and was unable to get out of bed.  It is unfortunately not an uncommon experience for me, and such ‘attacks’ have even known to last all day.  The strength and function of my legs returned a couple of hours later and was able to get out of bed.  Then Eureka, the word came to me – resilience. 

Light up thenight at promwith me_

Resilience is defined as “the capacity to recover quickly from difficulties.”  It is a quality in which a person rather than letting failure or obstacles defeat them, they find a way to overcome such stumbling blocks and rise from the ashes.  When living with a chronic illness, resilience is also about learning to recognise and accept that life with an illness is much like riding a rollercoaster, with many ups and downs.   Secondly, it is about learning coping strategies to acquire the strength and ability to take the ride. Then, an action plan can be put in place to help ourselves better cope with the challenges caused by chronic illness.

Some say that resilience is a quality that I possess in great supply.  These people see a person who despite everything a neurological condition throws at her, she still manages to get up and get on with life.  But, then again I don’t have much choice.

But emotionally when dealing with setbacks and the upheaval of coping when the symptoms are at its worse, then I somewhat of a mess!  The negativity and upset that it causes impacts on my internal dialogue, my behaviours and my self-worth, and leaves me feeling depleted and flat.  So, resilience is my word for the year as I want to learn to be more conscious of how life with this neurological condition is impacting me and to decide how I want to react.

Emotionally, I want to be able to bounce back quickly after confronting such debilitating symptoms. To not dwell on the negative and instead more productive ways to cope when these do occur.

I am starting my journey to resilience by keeping a ‘joy jar.’

Every day it is going to be my mission to write something that gave me joy, or that something that I managed to accomplish despite the limitations that the neurological condition places on my everyday life.  I can look back on these little notes of joy, positivity and encouragement on the awful days and allow myself to remember everything that I able to do instead of focusing on what I cannot or no longer able to do.

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Wish me luck on my journey of discovering resilience!

What is going to be your ‘one word’ of the year?

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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.

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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!

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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
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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.

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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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Surviving the Storm of Chronic Pain

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I have usually talked about my experience of living with chronic pain in passing. However, I thought I would shed some light on what it is like living with chronic pain from my own experience. And from my own experience living with chronic pain is very much like attempting to survive a storm.

The Storm that is Chronic Pain

Living with chronic pain is like attempting to function through a torrential storm.  A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.

The excruciating pain is limited to the upper and lower limbs. However, the pain in the legs is often much worse.  The suffering is unimaginable; a crushing sensation, as if caught in a vice which is only getting tighter and tighter.  Every step hurts, each step bringing stinging tears to the eyes.

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Like a storm, living with chronic pain can be all-consuming and relentless.

At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.

It is crippling and unrelenting causing a giant red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.

Pain consumes everything; a storm that is so powerful and savage, rough waves pulling at the body, dragging you under, overwhelming you.  And living with constant pain feels like that, it drags you under to the depths of despair.  It is all-consuming and relentless.

Living with chronic pain is all-consuming and relentless. Share on X

Living with constant pain is exhausting.

If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause.  Dealing with pain every day is draining. The nights laying there all alone with nothing but the pain for companionship is mentally exhausting.  The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights.  In the chronic illness community, we have a word for this – painsomnia.

The Unimaginable Suffering of Pain

Often, as the lack of sleep overwhelms everything else, a nap becomes necessary.  But no matter how much sleep we, it is never enough.  Sleep never eradicates fatigue.  A vicious cycle of sleeping during the day and not being able to sleep at night, seemingly impossible to break.

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Painsomnia can last all night and one in which you will try anything to distract you from the pain which usually consists of social media and Netflix

Each morning promises to be a clean slate, a new beginning of hope and promise, but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.

It is a constant companion, one who dictates how our day will go and what we can do with our day.  We speculate when the next ‘storm’ will impact, although very often these waves continuously crash. Pain pulls us under; our body slammed from every side by the rough waters.

Pain is a constant companion, one who dictates how our day will go and what we can do with our day. Share on X

The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.

The Loneliness of Living With Constant Physical Pain

Pain can make us feel incredibly lonely.

Pain is invisible, and as such nobody ever knows just how much pain we are in, there is an expectation to participate in society even when consumed with pain. We don’t want to say no or cancel plans, but it often feels if we are being held hostage by pain, forced to stay at home trying not to be sucked under.

 Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.

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Due to constant and debilitating pain, a lot of time is usually spent alone

Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company.  We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.

There are times when the pain wins; days when worn down by the pain that consumes us.  Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain.  Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass to help you find your way.

There are times when the pain wins; days when we are worn down by the pain.  Days when we don't do anything besides lie and think about the pain, feeling defined merely by the pain. Share on X

The Storms of Chronic Pain Cannot Be Stopped; Only Weathered

Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort.  Despite the constant affliction of pain, we continue to hope for better tomorrows.  We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.

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The storm of living with chronic pain cannot be stopped; one that can only be weathered. The only way to try and survive such storms is to use pain management techniques and try to still see the beauty in life.

The storm of living with chronic pain can’t be stopped; it is one that can only be weathered.  The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging.  We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain – those which include pacing, relaxation skills, and diet and exercise.

The storm of living with chronic pain cannot be stopped, it is a  storm that can only be weathered. Share on X

And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with bated breath for the next storm to arrive.

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After surviving the storm of a pain flare, we are left wondering when the next one will arrive…
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