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Coming Out Of A Flare: Finding Light At The End Of A Tunnel

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness.  Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts.  This month, I have decided to use the prompts to look at life after a flare.

Anyone living with a chronic illness has experienced a flare. And so, would agree when I say how difficult and distressing it can be experiencing one. Many fellow bloggers have written posts on what it is to experience a flare. I have even written a series of posts on living through a hellish flare. It can be an extremely dark time, but what happens when the current eruption of disabling symptoms start to dissipate into the ether?

Black and white silhouette of a woman standing and staring out of a window
During a flare we are trapped inside bodies that are overrun with symptoms; and trapped inside the same four walls of our homes as we wait for it to be over
"Living through a flare can be an extremely dark time, but what happens when the current eruption of disabling symptoms start to dissipate into the ether?" Share on X

Out of A Flare – Starting to Regroup and Putting the Pieces of a Broken Life Back Together

Experiencing a severe and debilitating flare can make you feel like life is on pause. Energy and strength, everything that usually helps you continue despite persistent symptoms from chronic illness are in scarce supply. As such even getting out of bed or having a shower requires a considerable amount of energy. Days spent rationing the limited power that we do possess. There is no energy to live, only just enough to survive the days ahead.

When coming out of this current flare, we begin to see the light at the end of a dark tunnel. As the light becomes nearer and brighter, we can start regrouping the pieces of our broken lives that illness has destroyed, back together. To start beginning to regroup, putting ourselves back together and allowing ourselves to regain control over symptoms that once had sole authority.

Black and white image of light at end of a long, dark tunnel
When coming out a flare we begin to see light at end the end of a very long, dark tunnel
"When coming out of a flare, we can begin to see the light at the end of a dark tunnel. As the light becomes nearer and brighter, we can start regrouping the pieces of our broken lives that illness has destroyed, back together." Share on X

After a flare, there is a need to regroup and regather the tools that had been cast aside, to help us thrive despite illness and its accompanying symptoms. To allow ourselves to retrace our long forgotten steps and to catch-up on the abandoned tasks from before the flare that knocked us down into oblivion.

Out of a Flare – A Need to Investigate and Identify Our New Limits

Every flare is different, and as such, we react differently to each one. And as we come out of a flare, there is a fear of doing ‘too much’ supposing that doing so will exacerbate symptoms, causing another flare.

"Every flare is different, and as such, we react differently to each one. And as we come out of a flare, there is a fear of doing 'too much' supposing that doing so will exacerbate symptoms, causing another flare." Share on X

The problem is, however, we no longer know of our new limits. We may now be able to do more before exacerbating symptoms, or it may be less. Our limits and what and how much we are capable of continually shifts. And as we adjust and accustom to our new limits, a flare occurs to restart the process all over again. Therefore, there is a need to investigate our new energy levels and identify our new limits.

Living with a chronic illness requires a constant need to reassess and investigate our new limits before the onset of symptoms, especially after a flare when we do not know when enough is enough

No one likes to be, or indeed feel unwell. To be constantly sick and continuously feeling the effects of debilitating symptoms is exceptionally unpleasant. Investigating, therefore, becomes another theme of living with a chronic illness. We are continually investigating ways in which we can improve our symptoms, even just a little. Investigating new measures we can undertake to lessen the severity or even the number of flares. Doing so, would drastically improve our quality of life and able us to experience life.

"Investigating becomes another theme of living with a chronic illness. We need to continually investigate ways in which we can improve our symptoms, even just a little." Share on X

Out of a Flare – Boosting Self-Care Habits

We may be coming out of a flare, but do not assume that it means we feel better and are suddenly back to our ‘normal.’ Recovering from a flare is a slow process. A process that does not just happen overnight. Many may assume that when recovering from a flare we need less self-care.

"If we don't boost the need for self-care we run the risk of exacerbating troublesome and unruly symptoms, and the risk of causing another flare." Share on X

I, however, would argue that we’re in fact in need of more self-care. If we do not take the necessary steps to look after ourselves, if we don’t, we run the risk of exacerbating troublesome and unruly symptoms. Taking the time for self-care activities that help boost physical and mental health is necessary to assist us to recover, and help stave off another deterioration.

"Taking the time for self-care activities that help boost physical and mental health is necessary to assist us in recovering, and helping stave off another deterioration." Share on X

Out of a Flare… Time to Explore New Settings

When I am in the midst of a flare, I am unable to cope with anything new and unfamiliar. Not knowing when symptoms are suddenly going to worsen, I crave the reassurance and security of a familiar and comforting setting.

belle quote beauty and the beast adventure in the great wide somewhere
When out of a flare, we start to crave new settings and are ready for adventure.

Coming out of a flare, I, however, start to crave and feel ready for more adventure. I am ready and feel more confident to encounter new settings. Living through a flare, therefore, feels very much like hibernation. A need to hunker down for comfort and to survive the current eruption of symptoms. Only as the threat diminishes, we then feel more prepared to leave the safe environment we spent during the duration of the episode. We now crave adventure, new settings to spend time in as long as we feel well enough to do so.

"Living through a flare feels very much like hibernation — a need to hunker to survive the current eruption of symptoms. Only when the threat diminishes, we feel ready and more prepared to face new and unfamiliar settings." Share on X

Out of a Flare – A Time for Reviving Life

As the flare passes, and we feel out of the danger zone for another one, we can finally start reviving our life. Reviving our love for the activities that fell by the wayside as we lay incapacitated by ruling symptoms.

"As a flare passes, and we feel out of the danger zone for another one, we can finally start reviving our lives once again. Reviving our love for the activities that fell by the wayside as we lay incapacitated by unruly symptoms." Share on X

Books and reading have always been a passion of mine, but during a flare, I have been unable to do so. But, as I am feeling stronger, the fatigue no longer causing double vision I can once again revive my enjoyment of reading.

pages of a book
At the end of a flare we can start to revive and breathe fresh into our lives. Start to revive forgotten hobbies and pursue our passions again. For me, and starting to feel better after a current flare, I have begun to revive my love for reading…

During the last month, I have already finished three books, and nearly half-way through the fourth. I am enjoying finishing my days, tucked into bed and losing myself in the fictional world created by the words of the author of my current choice, being immersed into another world, of another life, distracting me from the constant troubling symptoms of a neurological disorder.

Coming Out Of A Flare: Finding Light At The End Of A Tunnel
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Disability Blogger Award with a pill graphic and a disabled icon
In Awards

Disability Blogger Award (x2!)

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On Sunday morning, I received a nomination for an award. And today, Thursday, I received another comment on my recent blog post letting me know I had received another nomination! The award is titled the Disability Blogger Award which recognises and acknowledges those bloggers whose niche is disability, chronic illness, mental illness or special needs.

Fellow blogger, Georgina from the Chronillicles blog had the idea for the award. She decided that disability and chronic illness deserved more recognition for their efforts and decided to create the said award.

The Disability Blogger Award Rules

The Disability Blogger Award Rules

  • Thank your nominator
  • Recognise Georgina from Chronillicles as the creator of this award and link her URL – https://www.chronillicles.com
  • Use the Disability Blogger Award logo somewhere in your post
  • Copy these rules onto your post
  • Answer your nominator’s questions
  • Write 5-15 of your own questions (they don’t need to be illness related)
  • Nominate 5-15 other disability, chronic illness, mental illness, or special needs bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated

Firstly I would like to thank the lovely Liz and Nikki who have kindly nominated me for this award. I am honoured and extremely flattered to be recognised amongst so many other wonderful writers.

Liz, blogs at the brilliant Despite Pain which offers readers many useful and insightful tips on how to forge a life despite pain. The blog also radiates hope and positivity that a happy and content life can still be found outside of chronic pain.

Nikki, from Brainless Blogger, is one of my favourite blogs to read. Nikki shares life with chronic illness and chronic pain in such a beautiful and eloquent, and despite the writing being deeply raw and personal, it’s profoundly relatable.

Thank you both.

Please do visit their blogs to enjoy their amazing writing and follow them.

Liz’s questions and my answers:

1. If you didn’t have a health condition, but you still wanted to blog, what would be your niche?

Books! Definitely books; sharing what I have been reading and insights into my favourite reads. Other than writing, especially, my work on this blog, books are my other passion. I have loved reading since childhood and can usually be found with a book in my hand. And my Kindle is one of my essential items on my packing list for holidays!

2. What is your favourite season and why?

Due to the symptoms associated with the neurological disorder I live, with, I often find that the hot and cold weather can exacerbate my symptoms. So, Winter and Summer can be problematic seasons for me, with flares becoming routine during the months these seasons reside. So, I would day Spring has become my favourite season – with it being not too cold and reasonably warm without the heat being unbearable. I also love all the colour and beauty that can be found during the Spring months, especially in nature. I do enjoy trips to the garden centre to peruse the beautiful and colourful flowers. And also, I am able to sit outside, even just in the garden, to get some welcome fresh air instead of being cooped inside the same four walls.

3. If you could time travel, which time would you travel to?

History was one of my favourite subjects when I was at school, and although I found it incredibly fascinating to learn about the periods in history we studied, the events and how people lived was usually unpleasant and gruesome. Place and events that I would not want to experience. Instead, I think it would be intriguing to visit the 60s or 70s when my parents were growing up and to meet and get to know my grandparents, especially those I lost before I ever really got to know them. It would also be interesting to know what my Mum and Dad were like before they became parents!

4. Healthy salad or chocolate brownie?

Although I enjoy eating healthily, allowing some semblance of control whereas our lives are usually controlled by our illnesses, I would have to choose the chocolate brownie! I am a bit of a chocoholic!

5. What’s the last book you read?

I just finished the incredibly moving ‘If Only You Were Here’ by Alice Peterson. It was a brilliant and captivating book, and a must if you enjoy an emotional read like me!

6. If you ruled your country, what would be your first new law?

What a brilliant question! I hate unkindness or bullying so I would create a ‘Random Act of Kindness’ Law to encourage people to be kind and help each other, even if it’s just in small, inconsequential ways. There are many horrible acts of violence in the world, so it would be lovely to see more good instead.

7. What is your biggest pet peeve and why?

People using disabled bays when they don’t have a blue badge! It is always annoying when I am out with my carer and am unable to stop somewhere I need to because there a lack of a suitable parking space, especially on days where my mobility is worse.

8. What’s the favourite blog post you’ve written?

Tough question as I didn’t realise how many I’ve written! One which I am proud of, and one which I loved writing was ‘Embracing The Warrior Inside.’ It’s a blog post that I can still look back and read, especially on days where I’m feeling low, and it reminds me of everything I have overcome and how strong I am. I hope everyone enjoys it as I had when I write it!

Nikki’s questions and my answers:

1. What is your favourite pain or illness distraction and why?

Reading; it’s one of my favourite past time’s anyway, but when I am in pain or overwhelmed by the other symptoms that I experience, I love how it can transport me into another world, or even allowing me to become someone else for a short time.

2. Do you have a creative outlet?

I have this blog obviously but other than that no. I did use to love making cards but found it to be very expensive and became very difficult due to trembling in my hands. Still, I do love writing though and keeping up with social media keeps me occupied.

3. What is your favourite book and tell me why

I have so many! My all-time favourite and one which I read, or at least try to is Little Women by Louisa May Alcott. It’s a classic, one which I have loved since I was a young girl. I don’t have any sisters myself, and loved the relationship between the four sisters; it’s a really heart-warming story.

4. When you are in a mental funk what do you do?

I look at my positivity board, filled with photographs of happy memories, as well as inspiring and uplifting quotes. Or if I am feeling a lack of confidence, I take a look in my jar of joy and remind myself of everything I have achieved despite chronic illness and the symptoms with which I live.

5. When was your last vacation and how was it?

My last holiday was last June, a cruise around Norway and Iceland, and a brief stop in Dublin! Cruising can be difficult, especially with a balance disorder and even more so when the seas are rough, but again it was a reminder of my resilience and strength in spite of the neurological disorder with which I live every day. And despite the many difficulties, I still am looking forward to future adventures.

My Nominees

The most difficult part is choosing nominees, especially as there are so many wonderful bloggers within the disability and chronic illness community. Even more so, when many of my favourite bloggers have already deservedly been nominated by other people. Many of the nominees are other bloggers who

Narrowing it to only 10 bloggers was incredibly difficult so I am sorry for anyone I have missed, as I think you are all amazing!

My 10 Nominees:

Make sure that you take a look at their incredible and inspiring blogs and look them up on their social media pages.

My questions for my nominees:

  1. If you had to write about something other than disability/chronic illness/mental illness or special needs, what would it be and why?
  2. If you could travel anywhere in the world, where would it be and why?
  3. What is the biggest thing you’ve learned about yourself since becoming disabled or chronically ill?
  4. What is your favourite comfort food?
  5. Name a literary character you can relate. What is it about this character that you can relate?
  6. If you had to recommend one place to visit near to where you live, what would it be and why?
  7. What is your favourite TV show to binge-watch when you are having a bad day?
  8. What is the one blog post you are most proud of and why?
  9. If you could recommend one blogger or blog to read, which would it be and why?
  10. If you were suddenly only able to use one social media site/app which would you choose and why?

Your blogs and the work you do is brilliant, but I know what continued health struggles can get in the way of blogging, so there are no time constraints with replying to the nomination. Take your time and congratulations to all!

And thanks again to Liz and Nikki for your nomination!

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To My Pain (A Letter To Chronic Pain)
In Chronic Illness

To My Pain

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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.  For April, and because for several weeks I have been experiencing a severe pain flare, I would use the prompts to write a letter to my pain.

To My Pain

Yes, I have addressed this letter to you, ‘my’ pain and not just pain. I know pain is felt by many. Perhaps if you were benign, harmless and temporary, I would have only addressed it to pain. But you’re not, you’re persistent and chronic, becoming a significant and permanent part in my life. You have become another part of me, so I think I can refer to you as ‘my pain.’ The pain I feel, the pain you make me feel, is personal to me; something that is felt by only me, remaining invisible and unknown to everyone else.

"Pain is deeply personal to the individual.  We do not feel the same pains. It remains invisible and unknown to everyone around us." Share on X

Living with constant and debilitating pain is tiring…well more like exhausting!

What’s it like to live with you, you ask? Well, it’s tiring. Wait, it can be so much more than tiring. It’s exhausting. For weeks now, the excruciating and debilitating as it’s worst, there have been no breaks, no respite from the torment you have been inflicting on me and my life.

"Living with chronic pain is always tiring; exhausting even. Pain allows for no breaks, no respite from its torment." Share on X

You, which has become a sharp, electric shock type of sensation throughout my spine and legs, and one which has prevented me from getting to sleep, or on other occasions waking me from sleep. Getting a decent amount of sleep has therefore been hard to come by. And it has only made these last few weeks even more tiring as a result.

The impact that you have on those you blight spreads far and wide. The heightened levels of pain you have caused me has also added anxiety in my life. At times, I have become so overwhelmed and incapacitated by you that I can find myself unable to function. Physically, it can cause my legs to buckle before giving on me unexpectedly, giving me little time to react. You can also cause brain fog; causing me to remember important information or losing words I am searching for amongst a cloud of thick fog. The added stress and anxiety has become tiring, this constant worry about when this sudden loss of being able to function will occur, even the fear of going out in case of such an attack.

curled up in a foetal position because of pain

It’s tiring having to deal with setbacks that you create; the impediments created by your overwhelming urge to show your continued dominance, causing yet another dreaded flare. The continued knocks to our self-confidence as we once again begin to question our abilities and what we are capable of on any given day.

"It's tiring having to deal with setbacks from chronic pain; the impediments created by its overwhelming urge to show its continued dominance, causing yet another dreaded flare." Share on X

Through difficult times comes the opportunity for educating

Through the exhaustion and tiredness that you create, however, is also the opportunity for educating ourselves about you and what methods we can implement to calm and lessen the effect that you have on my life.

It reminds me of the quote ‘A smooth sea never made a skilled sailor.’ Meaning that through the tough times that you cause, we can learn more about what helps and what doesn’t to come up with a more effective pain management plan for the future.

Time and time again I’m reminded that pain is uncontrollable. You like nothing more than to show your power and dominance, and where there is nothing I can do to quieten your reign of terror. To try and control you, would prove to be futile, and waste precious energy I don’t possess. The only thing I can do therefore is to learn ways to manage your existence.

"Time and time again I am reminded that chronic pain is uncontrollable. Liking to show it's power and dominance. We can only learn ways to manage its existence." Share on X

I have been educating myself on alternative methods to manage you and your unwelcome presence. I have been mainly looking into CBD oil and the positive effects it can have on you, on pain. And I have been learning that there is certainly a lot to educate me about concerning CBD oil!

At the receiving end of your wrath…

Until I take action however, I continue to be at the receiving end of your anger and wrath. Especially at night, when there are no distractions to be found to help ease the burden of pain. I’m forced to receive your attempts to enforce insomnia, as well as the debilitating pain.

And unfortunately sleep does not come, and when I awaken, I observe incredibly dark circles under my eyes. My reflection was expressing the lack of sleep that I received the night before. The need to rejoin the real world calls, I depend on concealer and blusher to disguise the physical effects that you bequeath.

"Living with chronic pain and it's invisibility we are often at the receiving end of judgements and suspicion; believing that we are faking being sick when in fact we are faking being well." Share on X

You are mostly invisible, but disguising the only physical evidence of your existence, I am at the receiving end of judgements and suspicion. When people cannot see something, they often deny its reality. In the case, of illness people assume that we must be fabricating our supposed illness; that because we look healthy than we must be so. What most people cannot comprehend that we are not faking being ill, but are instead faking being well.

I'm not faking being sick' I'm actually taking being well

As much as pain has taken it has also been giving…

I could write a long list of what chronic pain has taken from me, such as loss of independence as one example. However, pain has also been giving me little gifts that are important to remember and appreciate.

"As much as chronic pain has taken from me, it has also given me many gifts and taught me many valuable lessons." Share on X

Chronic pain has taught me some valuable lessons that make it easier to bare living with you every day. You have allowed me to learn things about myself that I may have never learned otherwise. Giving me the knowledge that I’m stronger than I ever thought; the training to be better prepared to face difficult situations as well as future flares. Pain has also given me patience. When experiencing a chronic pain flare, although exceptionally unpleasant, I know there will be an end. I need to wait it out, thus requiring patience.

"Pain has taught me patience. Something I've needed when experiencing a chronic pain flare; knowing there will be an end, I need to wait it out." Share on X

Quieting…

I am now calling on patience now as I wait on this current chronic pain flare to cease and subside. Oh, I know that you will inevitably return but right now I am waiting on you to quieting down the strength of the power you hold over my body. Waiting on the day to which your volume has quietened enough for me to be able to continue with my life without your constant influence.

Regards

Me, Rhiann.

To My Pain (A Letter To Chronic Pain)
April Link-Up Party with A Chronic Voice
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In Chronic Illness

Blooming Despite Adversity…

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During Adversity, We Look For Inspiration

Waking this morning in unendurable pain, I felt incredibly discouraged. Unable to get out of bed due, I immediately grabbed my iPad, for much-needed positivity and inspiration.

On my Pinterest feed, I have a board entitled ‘Positivity.’ A board filled with beautiful and inspiring words that would fill even the melancholy of hearts with positivity. The board has an eclectic mix of quotes, from famous scholars to quotes from books and films. There is a quote for everyone.

‘The Flower That Blooms In Adversity Is The Most Rare and Beautiful Of All’

Scrolling through the many quotes that exist on the board, one immediately caught my eye. It read ‘The flower that blooms in adversity is the most rare and beautiful of all.” The quote above is from the Disney film Mulan. It is thought, however, the basis of the story is that of the Plum Blossom. The plum blossom is the earliest blooming flower that grows in China.

'The flower that blooms in adversity is the rarest and beautiful of all' is such an exquisite quote that encapsulates those who experience chronic illness wonderfully." Share on X

It does not wait for the sun and warmth of Spring to arrive before it blooms. It thrives in the winter before the leaves of the tree have fully formed. The people of China are thought to be proud of what the flower represents. The plum blossom has been the inspiration of many poets and artists for centuries.

the flower that blooms in adversity is the most rare and beautiful of all text with flowers wrapped around the text and flowers bordering the image

A flower will easily bloom given the perfect conditions; it is easy. A flower that grows despite bad and adverse conditions is unique and more beautiful because by all rights it shouldn’t have bloomed at all. The same principle can apply to people.

"A flower that grows despite bad and adverse conditions is unique and more beautiful as by all rights it shouldn't have blossomed at all. The same could be said for people." Share on X

Those who live through adversity and hardships is unique and beautiful because of them. Mulan is considered a heroine due to her overcoming the problems caused by her not conforming to the cultural standards of being a woman. And also due to the difficulties, she faces from serving in the army as another gender and eventually saving China from the Huns.

The Insecurities of Living With Chronic Illness

Everyone lives with insecurities. But, when living with a chronic illness, these insecurities grow exponentially. We feel sick the majority of the time which strips our self-confidence and sense of self-worth away. The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent.

"The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent." Share on X

But it is not only insecurities surrounding our bodies and our perception of beauty that we have to confront. There are many insecurities regarding everything outside of our comfort zone. Anything new and unfamiliar become frightening and overwhelming. After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be. We begin only to see our struggles and start defining ourselves by them.

"After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be." Share on X

There’s Strong, and Then There’s Chronic Illness Strong

What we forget, however, is the number of times we have gotten back up after being knocked down by illness. We get knocked down time and time again, but still, we rise. And when we are back on our feet, although it may not seem like it, we are stronger and more resilient than before. We begin to thrive and bloom when pushing past our demons, accomplishing things we may have never thought possible. However, despite all this, still radiating positivity and happiness despite the harsh conditions of living with a chronic illness.

"We forget the number of times we have gotten back up after being knocked down by illness. We get knocked down, time and time again, but still, we rise.  Stronger and more resilient than before." Share on X
Yellow, blue and green watercolour background and text which reads there's strong then there's chronic illness strong

It is easy to go into survival mode when diagnosed with a chronic illness. To use disease as an excuse for everything that is wrong with life, or complaining about the impact it is having. However, in my experience and witnessing numerous people challenging their experiences into writing and advocacy and celebrating wins and precious moments, choosing to see them as blessings and not a right. It is these ‘rare flowers’ that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity.

"It is 'rare flowers' like those I have met in the chronic illness community that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity." Share on X

Thriving Even In Adversity

Perseverance is key to being able to flourish and bloom in any area of life. But perhaps more so for those living with chronic illness. To continually thrive despite limitations and restrictions that such illnesses place upon us is no easy feat. But still, we don’t give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no.

"But still, we don't give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no." Share on X

To thrive and not just survive life with a chronic illness, we must learn to listen to our bodies. To learn to balance our sheer determination versus that of the demands of the symptoms that vex us. And to recognise when we need to say no to something rather than the desire of wanting to say yes. Learning to do so, although it can be irritating can decrease the number of severe flares, increasing the opportunities for more fun. It can be tempting to rebel against the restraints that illness has but to flourish we need to learn to cooperate.

"It can be tempting to rebel against the restraints that illness has but to flourish sometimes we need to learn to cooperate with the symptoms and ultimately our bodies." Share on X

J.K. Rowling once wrote, its words uttered by her profound and philosophical character Professor Dumbledore. He said, “It is our choices that show what we truly are, far more than our abilities.” A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are.

"A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are." Share on X

Community: A Garden of Rare and Beautiful Flowers

The beautiful and rare flowers within the chronic illness community see opportunity even within the most adverse situations. When limited to bed, for example, we see a chance to relive happy memories. Or to catch up on something on our ‘I must get a chance to get round to that’ list. To thrive, we focus on what we can do instead of that which we are unable. I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven’t found the time to do so. It was during such a time that I stumbled upon the very quote that inspired this post. Inspiration often comes from the most unexpected of places.

Purple flowers with the text every flower must grow through dirt over them
"I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven't found the time to do so." Share on X

Every Flower Must Grow Through Dirt

It may often feel that the burdens of illness that are always present in our lives, it may feel that they have buried us. Unable to escape or grow due to the new constraints that it has placed in our lives. However, it does not have to be this way. It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt.

"It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt." Share on X

I am dedicating this post for all those who are stuck in the darkness. For all those who are only aware of the insecurities arising from living with illness. Know that you have the same abilities from your life before sickness and you are still capable of so much. You can thrive and bloom despite the restrictions from constant and unrelenting symptoms. You can become a rare and beautiful flower despite adversity. It is for those within the chronic illness community who continue to support and comfort for those in need in spite of their suffering.

field of white, pink and yellow tulips underneath a pink background with blooming despite adversity written
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picture of birthday cake with candles and underneath text which reads March: A Month of Celebration and Reflecting
In Chronic Illness

Celebrating Birthdays With 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.  Because March is also the month where my birthday falls, I thought I would use this month’s prompts to discuss the impact of celebrating birthdays when living with chronic illness.

Failing at Life Because of Illness

Failing: Noun. An act or instance of failing; failure.
2. A defect or fault; shortcoming; weakness

March is a busy month in the household, with both my Mum and I celebrating birthdays during these thirty one days.

Like many living with a chronic illness, birthdays, although as much as they are often enjoyable they can also prove to be bittersweet.

"When living with chronic illness, birthdays can be bittersweet as it is a reminder that we have lost another year to it." Share on X

Birthdays can be a time of reflection. To reflect on the year since we celebrated our last birthday. And reflecting on life, that we have led since our birth, and the life we thought we thought we would have had. As such, it is often a painful reminder that we have lost yet another year to chronic illness.

Living with chronic illness it can feel as though time has frozen; our lives stuck on pause when everything moves fast and everyone’s lives continue unheeded

Chronic illness is like a kidnapper, holding you hostage, unable to escape. It forces you into isolation, with limited access to the outside world. Time has frozen, and our lives are stuck on pause while the outside world moves fast and everyone else’s life continues unsilenced and unaffected by illness’s grip.

"Time can often feel it's frozen. That our lives are stuck on pause while the outside world moves fast, and everyone else's lives continue unsilenced and unaffected by chronic illness." Share on X

As such, we can believe that we are failing. It feels like we are failing; that we are a failure because of everything we are unable to do and failing because of the lack of independence and the need to be reliant on others.

Our minds falsely makes us believe that we are failures; that we are somehow less than because of the debilitating effects of chronic illness.

Succeeding Past The Limitations of Chronic Illness

Succeeding: Verb. To thrive, prosper, grow, or the like
2. To come next after something else in an order or series

However, perhaps we need to change how we view our circumstances.

Instead, of regarding birthdays as a reminder of what we have lost because of chronic illness, perhaps we need to celebrate another year of surviving. That we are succeeding despite the limitations that chronic illness enforces on us.

To acknowledge the successes and everything that we haven’t lost because of our conditions. Often the progress seen when living with chronic illness is slow and can often feel as if we are not making any progress at all.

"We are succeeding over pain and illness whenever we triumph over the limitations they impose upon our life. We are taking control back from chronic illness whenever we achieve anything despite the constraints they inflict." Share on X

But the truth is, we are succeeding over pain and illness whenever we triumph over the limitations they impose on our lives. Whenever we achieve anything despite the constraints that it inflicts we are taking back control chronic illness already has.

Whenever we triumph over the many hurdles blocking our path because of the symptoms of chronic illness we are succeeding despite it

We are succeeding when we decide to make the most of the life we have now instead of wishing we were well, or waiting until we are well until we start to live life again.

This year I succeeded over the neurological condition I was diagnosed with by going on another cruise, making the most of it despite debilitating and excruciating pain. Also, I overcame the anxiety and apprehension that the condition can cause to book a trip to the Harry Potter Studio Tour in London. At times, both were extremely difficult but was proof that I was living my life despite my diagnosis and was stronger than the hold it has over me.

Pausing and Reflecting on Life and on Getting Older

Pausing: Noun. A temporary stop or rest, especially in speech or action
2. A cessation of activity because of doubt or uncertainty

Taking a breath and reflecting on my life, it feels like life is pausing. On hold. It is although life is still the same as it was when I last celebrated my last birthday.

Still, I am persecuted by the same symptoms as last year: no improvement and no progression in other areas in my life. Another year passing, and so does the hope of recovering. When living with chronic illness, it often feels that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant. I desperately want to take back life away from pain and illness. Instead, I feel stuck and disheartened.

"It can often feel that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant." Share on X
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Birthdays give an opportunity to pause and reflect on our lives and to the future. Doing so, when living with chronic illness, however, it can often be met with anxiety and apprehension due to the many unknowns

When I pause and look toward the future, I do so with a sense of anxiety and apprehension. I fear whether there will be further deteriorations in the symptoms and my condition that will further erode the little independence I have currently. Wondering what life will look like, often wishing that I sometimes could see it in a crystal ball but worry what I will witness if I do.

"When I look to the future, I do so with anxiety and apprehension. I fear there will be further deteriorations in the symptoms I experience and that they will further erode the little independence I have currently." Share on X

I try and not to dwell on the what ifs, however, and instead try and pause and appreciate on what I do have. To give thanks to loving and supportive parents, that do so much but ask for little in return. The friends in my life both in real life and those I have met online. To welcome and acknowledge the beautiful and heartfelt messages of support and thanks on my blog, and to recognise the impact my words has had on those who have read them.

Deciding on A Path To Celebrate

Deciding: Verb. To solve or conclude by giving victory to one side
2. To determine or settle (something in dispute or doubt)

As I sit in my bedroom, currently disabled by pain and weakness in my legs, and thus affecting my mobility, I am deciding on how to celebrate my birthday next week.

It is hard as anyone living with an unpredictable health condition will know, planning can prove to be extremely problematic. What will tomorrow look like for us?

"I am deciding how to celebrate my birthday…When living with a never-ending condition; however, it can be problematic as we have no idea what tomorrow will look like for us." Share on X

How will I feel on the morning of my birthday? Will the pain, fatigue and mobility problems be kind enough to me to allow me to celebrate as planned?

There are often many different paths we can take when living with pain and illness, and it can often be difficult to decide which to take

These are the questions that we are silently asking in our minds, but have no answers. There are no crystal balls that we can consult to help us decide on a particular path. If I were to browse my diary, so far most of the entries recorded are marked with a question mark. It is a symbol of the many unknowns of life with a never-ending illness.

"In my diary, many of its entries are recorded with a question mark. It is a symbol of the many unknowns of life with a never-ending illness, including our future capabilities." Share on X

It’s not only my birthday that falls during March. My Mum also has her birthday this month, and Mother’s Day also occurs in March. As a result, I am deciding not only what to buy as presents for both these occasions, but also how am I going to buy them. Do I currently have the energy and sufficient mobility to walk around and browse many shops? Or should I forego physically visiting stores and take advantage of the many benefits of online shopping?

Thriving and Not Just Surviving Life with Chronic Illness

Thriving: Verb. To prosper; be fortunate or successful
2. To grow or develop vigorously; flourish

When going through a flare, or incapacitating troubles associated with chronic illness, it can often feel that every day we are merely surviving. But we don’t want to endure; we want to thrive despite the numerous limitations that chronic illness brings with it.

"We don't want to endure and survive; life with chronic illness. We want to thrive despite the numerous limitations that they bring with it." Share on X

But perhaps it only feels that we are merely surviving. Perhaps our minds are deceiving us to make us believe we are just surviving. Maybe we are thriving despite what we are led to believe. We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.

"However, we are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality." Share on X

To thrive sometimes involves letting go of what we cannot control, and only worrying about the battles that we have a chance of winning. Thriving is celebrating the even smallest of accomplishments, and appreciating the sheer effort and courage it took to achieve them.

To thrive with a chronic illness means that we have to let go of everything that we are unable to control and only worrying about those battles that we can win.

To grow and succeed is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain.

"To thrive is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain." Share on X

I am continuing to thrive despite all of the limitations and difficulties that this neurological disorder places in my path. On this birthday I will take the opportunity to reflect on everything I’ve done despite constant and debilitating symptoms. I will celebrate making it to another year. And although this is not the life that I had imagined for myself, I am determined to embrace and celebrate the life I do have.

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