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Being A Prisoner To Chronic Illness
In Chronic Illness

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.

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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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Mindful Realisations

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Recently, I finished a six-week Mindfulness Course.  I

I was referred to the course by a healthcare professional to help with the anxiety that I have lived with for many years and is a consequence of living with a long-term neurological condition.

Everyday Mindfulness, describes it as:

Mindfulness helps to change the way you think and feel about your experiences, especially stressful situations.  It involves paying attention to your thoughts and feelings in order to become more aware of them, less enmeshed in them, and better able to manage them.

Throughout the course, we learnt about the principles of mindfulness; specifically the triad of awareness, acceptance and non-judgement that the technique is based upon.  Mindfulness teaches us to be focused and aware of the present moment, to acknowledge and accept our feelings without judgement or battling against them, to be better able to embrace them and ultimately let them go.

As the course was facilitated by Mental Health Services, the sessions were focused on the technique being used for anxiety and depression; our negative thoughts were described as being like trains, and when suffering from anxiety we enter the train letting those negative thoughts circumvent our brain.  Mindfulness, however, teaches us to stay on the platform, but allow the trains to pass without getting on.  Such a brilliant and simple metaphor to explain what mindfulness is and its function.

Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them
Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them

As the course progressed, I began to realise that the technique could not only be used for anxiety management but also help with the stress that living with a long-term health condition can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now.  This is supported by much research which has shown that patients with chronic conditions reported feeling calmer, better equipped to deal with illness during times of stress and reported higher levels of well-being after incorporating mindfulness into their daily routine.

[Tweet “Acceptance, in essence, means acknowledging that of what we have no control of”]

After starting the mindfulness and relating it to my life with a neurological condition, I came to realise how little I have actually accepted my illness.  When we are mindful, we give our full attention to whatever is happening in the present, and without changing the narrative and judgement of our thoughts and feelings. Acceptance, in essence, means acknowledging that of what we have no control of; accepting life as it is at this exact moment.

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While in the midst of excruciating and debilitating symptoms, however, it is difficult not to judge – ourselves, for our perceived weakness or our failing bodies which cause these symptoms, to begin with.  Nor do we as patients sit there without attempting to change our current experience – we try medications, heat/ice packs, warm baths,  anything to try and ease the symptoms that are consistently bothering us.

Often I feel at war with my body when my symptoms are severe; I curse, hating my weak legs and the other symptoms giving me grief, wishing that at that time I was someone else, had someone else’s body. I worry about the implications of living with a long-term health condition, such as worrying about the future and as a result, my head becomes permeated with worst case scenarios.  So perhaps I hadn’t reached acceptance as I thought.

Mindfulness in many ways somewhat resembles autumn (or fall).  It is said that autumn is a beautiful reminder what a relief it is to let things go that we no longer need, or does not serve us any purpose.  As trees shed their dead leaves during the season; mindfulness allows us to let go of any negative thoughts which don’t help us and only allows us to get stuck in the depths of despair and hopelessness.

[Tweet “Mindfulness allows us to let go of any negative thoughts which don’t help us… “]

Mindfulness instead teaches us to focus on the present; accept our illness and the way its symptoms make us feel allowing these thoughts and feelings to fall into the background enabling us to focus on the positives.  For example, instead of focusing on the pain in my legs, I allow myself to enjoy the feel of the sun on my face or savour the taste of hot chocolate (my favourite Autumn/Winter indulgence!).

Mindfulness is much like autumn reminding us of the benefits of letting go

I am beginning to incorporate mindfulness during my daily routine, alongside the usual practices such as taking medications and journaling.   It is not, unfortunately, a cure for the symptoms associated with my neurological condition, they still exist, but it is a coping strategy for times when everything feels out of my control (which is a lot!).  There are days when I find it difficult, but like anything, it can take practice to perfect the technique.

[Tweet “Mindfulness is a useful coping strategy for times when everything feels out of my control.”]

Mindfulness I have realised can be a mechanism to help find the light, during the darkest of days.

Useful Reading about Mindfulness and specifically its use to help chronic pain and chronic illness: 

  • Living Well With Pain and Illness: Using mindfulness to free yourself from suffering by Vidyamala Burch
  • How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
  • Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch

 

 

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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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August 2017 Linkup Party with A Chronic Voice: Missing, Appreciating, Striving, Releasing, Eating

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One of my favourite chronic illness bloggers, Sheryl from ‘A Chronic Voice’ has started a link up party! These parties are a monthly get together for any bloggers who live with or have experience with a chronic illness.  These will provide opportunities to ‘meet,’ share thoughts, information and learn from one another.
To gain more information about these parties and information on how to participate then you can visit Sheryl’s original post here.
The prompts for this month are:

  • Missing
  • Appreciating
  • Striving
  • Releasing
  • Eating

Missing: My late dog, Honey 

I’m not going to lie, but I have been struggling these past couples of months and been spending more time alone in the house.  And it’s during these times that I have been really missing the company of our late dog, Honey.  Although she may have been pretty useless if something happened to me such as a fall (which have also been increasing) however the mere presence of having her around was comforting.  Of course, I also miss her copious amounts of hugs and kisses which never failed to make a bad day better.

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Appreciating: Books

In my last post, I wrote about my love of books and reading.  As the pain and relentless trembling in the legs have worsened recently, I appreciate the wonderful world of books for allowing me to escape from the monotony of chronic pain and the other symptoms that have taken permanent residence in my everyday life.  These books, the many that I have read so far this year has taken to many different places that my body is physically unable to go.  It has proven to be a great distraction for me on the bad days, which unfortunately have been many.  And for that, I have been so very grateful.

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Striving: Striving for Progress 

As I have already mentioned, things have been challenging in regards to my health which is really frustrating especially as I take steps to try and improve it – I go to a local gym in the attempts to strengthen my muscles (which hasn’t happened). Or at the least ensure that the weakness does not get any worse.  I also ensure that I spend time every day to complete the vestibular rehabilitation exercises that I was given at the hospital to help with the dizziness and vertigo as well as the physiotherapy exercises to improve the functioning in my legs.  So far, they have been unsuccessful, but still, I persevere in the hopes of improving my situation.  Like all of us, I am never going to achieve perfection, but I hope one day soon I manage to attain progress and improvement.

Releasing: Positive Thoughts 

As a writer myself, I love words, and I love finding new and uplifting quotes to decorate my bedroom to raise my spirits and inspire me on my bad days, and those days I am stuck in bed.  I also own several pieces of jewellery that have a positive quote or mantra that I can wear and remind myself during difficult times.  I release these positive thoughts to elevate my mood.  I have even found some cards that have positive and inspiring quotes on them that I have even used to send to others also living with chronic illness and disabilities (such as the fun and brilliant #spooniepost) to help remind them of everything that is positive during their own struggles.

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Eating: Homemade Pizza

In our attempts to eat healthier, my Mum and I have been spending some time experimenting with some of the recipes from the beautiful cookbook ‘Cook Happy, Cook Healthy‘ by Fearne Cotton.  Our favourite meal from this book has been the Healthy Homemade Pizza which uses spelt flour instead of regular white flour due to its nutritious qualities.  I love this, as it’s surprisingly easy to make and it doesn’t leave your stomach feeling heavy and stodgy afterward, which I often get after indulging in a takeaway pizza.  It has also been enjoyable to make (despite all the mess!), and I have felt incredibly accomplished while enjoying the fruits of our labour!

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The Magic of Books for the Chronically Ill
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The Magic of Books For The Chronically Ill

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In a recent post, I wrote about my passion for television shows. And the distraction they provide from the persistent chronic pain ravaging throughout my legs.  In the post, I also shared my favourite box sets to watch when incapacitated by chronic pain. Or the many other symptoms that accompany life with a neurological condition. There is magic in watching television shows, but magic can also be found in books.

Books and Reading; My First and Lasting Passion

Yes, television and films are one of my primary passions. However, it is not my only passion.  My first love and one that has followed me throughout my life since childhood is reading.  Books are something that I have always collected, amassing goodness knows how many over the years. Books can be found all over my home, especially in my bedroom! Many I end up donating to charity shops or passing them along to those I know would love it as much as I did. But still, I somehow amass so many books!

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The problem of being a massive bookworm!

I hate becoming lost, especially in unfamiliar places.  But when perusing the shelves of bookshops often time seems to slip away from me, not noticing if lost or lose sight of my companion.

As a young child as much as my Mum tried to engage me in other activities such as colouring or puzzles, I quickly became bored, once again turning to the safety and magic that books provided.  Many of my photographs are of me clutching a book, losing myself in the words and pictures on the page.  As we have now established my condition whether genetic or due to another organic cause, was from birth, I wonder if I retreated into books as a way of dealing with symptoms such as pain that I could not yet verbalise. 

‘Reading Gives Us Somewhere to Go When We Have to Stay Where We Are’

Still, I am continuing to use books to distract myself from the effects of chronic illness.  Recently I came across a quote, ‘Reading gives us somewhere to go when we have to stay where we are.’ A quote that is incredibly apt for someone living with a chronic illness.

The Magic of Books When In Pain and Sick

There are many times in which I am incapacitated by one or more of the many symptoms that I live with day in and day out.  Weak legs that force me to lie on my bed are within the same four walls that I am compelled to spend most of my time. Days like these, I cannot go anywhere or do anything, so I find solace in the written word.

Escapism. A place where I can forget my predicament and everything that chronic illness has given and taken away from me.  Escapism from the vast number of symptoms that are plaguing me.  But books can also take you places.  

"Books allows me escapism. A place where I can forget my predicament and everything that chronic illness has given and taken away from me.  And escapism from the vast number of symptoms that are plaguing me." Share on X

Books are like a unique magic carpet ride, transporting you to faraway places; locations, you’ve always wanted to go and experience but which current circumstances prevent you from doing so.   For instance, Prague has been on my ‘bucket list’ of places that I would love to visit someday.  However, as I’m unable to fly due or cope with large airports, illness has prevented me from ticking it off my list.

Books as a Passport From The Realities of Life, and Creating a Wanderlust for Travel and Adventure

Last year, I read the beautiful ‘A Year and a Day’ from author Isabelle Broom in which a large chunk of the story takes place in this very city.  Isabelle writes, and the exquisite level of detail with which she describes Prague and its unique landmarks made me feel that I had been there and experienced the city for myself.   OK, so it may not be like experiencing travelling firsthand, but when circumstances prevent you from being able to move from where you are, books are the next best thing.  In fact, all of Broom’s books give you major wanderlust as each novel has taken place in different, exotic locations, and each place beautifully and meticulously described, making you want to grab your passport and book flights immediately. 

 And it’s not only places that exist now that books allow you to visit; historical fiction allows you to visit and experience places that existed many years ago (or at least what it was like from the author’s perspective). But very often, and for me anyway I want to be uplifted.  A story to remind me of the beauty and wonder of the world; to comfort, and reassure myself that there is still hope and much to be grateful for despite chronic pain.

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Reading can give you real wanderlust!

Books Are An Escape From a World of Sickness

In books, we can be whoever we want to be.  We don’t have to sick, confined to bed and in constant pain.  We can be the hero, the warrior, the woman who eventually finds love and her happily ever after.  Getting lost in these worlds, we no longer feel the pain slowly dragging us down into a dark abyss.  We no longer have to fight against our bodies.  These books on my bedside table allow me to experience a snapshot of normality; one in which I am independent and confident.  No longer a burden on others.

"In books, we can be whoever we want to be.  We don't have to sick, confined to bed and in constant pain.  We can be the hero, the warrior, the woman who eventually finds love and her happily ever after." Share on X "In books we no longer have to fight against our bodies.  These books on my bedside table allow me to experience a snapshot of normality; one in which I am independent and confident.  No longer a burden on others." Share on X

Books are a magical portal allowing us to escape from our lives.  Taking us away from this world of sickness – time spent in bed, mobility aids, hospital appointments, and medications.  Books can allow us to find out who we wish we could be.  For many, reading is merely a hobby, a way of filling time, or for light entertainment.  But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness, there are magic and power in those printed words.

"For many, reading is merely a hobby. But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness, there are magic and power in those printed words." Share on X

Does anyone else love to read? What books do you enjoy; are there any that provide comfort and sanctuary away from life with chronic illness?

And let me know of any great book recommendations that you have.

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