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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

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!

Screen Shot 2017-08-05 at 15.05.14 — 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.

20170806_142800 — 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.