Tag

spoonie

Browsing

The middle of May saw Mental Health Awareness Week hosted by the Mental Health Foundation. The theme this year focused on body image; how we think and feel about our bodies.

"According to the Mental Health Foundation, 30% of all adults felt so stressed by body image and appearance that they felt overwhelmed or unable to cope." Share on X

Social Media And The Influence On Body Image

In the age of social media, we are more aware than ever of how our bodies look. In an age where we are comparing our bodies with others. More aware than ever regarding the idea of perfection. Seemingly more aware than ever when our bodies do not fit in with the social norm.

"In the age of social media and apps such as Instagram we are more aware than ever of how our bodies look…and when our bodies do not fit in with the social norm." Share on X
View this post on Instagram

Formal nights are a lovely excuse to get dressed up in a fancy dress and feel a little bit glamorous, especially when you are battling the effects of #chronicillness and #chronicpain which makes you feel anything but glamorous and elegant. You can’t see it but I am in a terrible #painflare forced to take painkillers and so also battling terrible #nausea!! Oh, the wonders of #makeup!! Big thanks to @simplyabbyrae from the @benefitcosmeticsuk counter in #Boots for helping me pick out some lovely products and tips on how to apply!! #spoonie #chronicillness #chronicpain #chronicillnesswarrior #chroniclife #neurologicaldisorder #FND #functionalneurologicaldisorder #pandoaurora #formalnight #cruising #travel

A post shared by Rhiann Johns (@serenebutterfly) on

Every one of us has flaws; everyone has insecurities and things they are not happy with regarding their body or appearance. I, myself, for years, have not felt satisfied with what I see when I look into the mirror. For years, I have wished that I was prettier, thinner, or that I didn’t need to wear glasses all the time. When looking at my reflection in the mirror, I hear the cruel remarks and gibes from others; comments which have since stayed with me. Comments which still affect my self-esteem and how I think and feel about my own body and appearance. It’s probably why that there are not many selfies or photographs of myself in general on Instagram; because I am insecure and unhappy with my appearance.

"For years, I have been unhappy and insecure about my appearance and body image.  A reason why there is a lack of selfies and photographs of myself in general on Instagram or even on my phone." Share on X

Illness Can Cause A Hate Relationship With Our Bodies

When diagnosed with a chronic illness, the insecurities concerning body image grow exponentially then we could ever think possible. We develop more of a hate relationship with our bodies, stronger and unyielding to change than ever before. When living with a chronic illness we experience pain, discomfort, and loss of control. All of which also can lead to a change in physical appearance. And which can have a detrimental effect on self-esteem and how we feel about our bodies.

"When living with a chronic illness, we experience pain, discomfort and a loss of control. All of which can lead to a change in physical appearance. And which can have a detrimental effect on how we feel about our bodies." Share on X

The Influence of Illness On How We View Ourselves and Our Bodies

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. A body that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. A game that I appear to have no control in, and which the symptoms have the upper hand. It continually likes to keep me on-and-off my toes, both figuratively and literally! As I make plans and wanting my body to help me fulfill those plans, my body, however, often have other aims, having a mind of its own.

Chronic illness causes many insecurities and unhappiness regarding both appearance and body image as the symptoms associated with it ravages our insides and sometimes even outward appearance
"It is hard to feel positive about a body that reminds me of its dominance with its unpredictability. A body that reminds me that it plays by its own rules. How can we love a body that treats us as it's own worst enemy?" Share on X

How can we love a body that treats us as it’s own worst enemy?

As the limitations caused by symptoms increased, becoming more disabling. The effects of such symptoms gradually became more visible, causing falls in public; the pieces of my already fractured body image became even more broken. Broken pieces scattered, and seemingly nothing I could do to repair the damage and put the pieces back together again.

Such debilitating and unpredictable symptoms can effect self-esteem, making us insecure and feeling like a prisoner in our own bodies

The shame and embarrassment when such incidents only add to the insecurities surrounding my body image. It affects my self-confidence, such as the worry about what others may think. But also, it affects my confidence regarding venturing out of the safety of home. No longer able to trust my failing legs, and the unpredictability of when such attacks will occur only adds to this — a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body.

"No longer being able to trust my legs and the unpredictability of when such attacks will occur only added to my negative body image. And a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body." Share on X

Learning To Love Ourselves And Embrace Our Flaws

But, unintentionally the neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but am unable to divorce.

"Life with a neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but which I am unable to divorce." Share on X

I need, therefore to learn to accept the constant presence that the condition has and will continue to have on my life. I need to remember that, as difficult it may be, that my body, with all its flaws and complications, is also my permanent home. A home that with all its problems and the insecurities it causes I need to learn to embrace and love. To look beyond what my body can no longer be able to do, or have difficulties with to what it can still do for me. To remember how far I’ve come and what I’ve achieved despite the obstacles created by illness. And to remember that despite everything, everything that our bodies throw at us, we are still here. Surviving. And one that is still keeping me alive.

"To develop a more positive body image, I need to look beyond what my body can no longer be able to do, to what it can still do for me. To remind myself that I am still here, and my body is still keeping me alive." Share on X

Perfection Is Merely A Social Construct; Not Reality

It’s easy to look at social media, such as Instagram and feel dissatisfied with our apparent flaws and blemishes against the idea of perfection on our screens. But, the reality is that perfection does not exist. Perfection is merely a social construct; no one or nothing is perfect. The images we see online have often been airbrushed. Or the many filters that are available on our favourite apps have been used to make the photograph worthy of being shared on social media.

"Perfection does not exist. The images we see plastered on social media have been airbrushed, or filters have been applied to them to make the photograph worthy of being shared." Share on X
The images we see on social media, such as Instagram have often been airbrushed or put through popular filters that give us an impression of perfection. Perfection, however, does not exist

Learning to love yourself is not an easy process, insecurities, and negative feelings toward my body will always be something I’ll need to fight. Body confidence and body positivity is something that I will have to continue working toward. I am not sure how, but I am sure I will eventually get there. But the more I read, the more I learn that everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than.

Quote by Steve Maraboli in a white speech bubble with a pink marble effect background. The quote reads "There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty."
"Everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than." Share on X

There are many quotes that state that authenticity and being yourself is the purest kind of beauty there is. The moral of the story, therefore, is to be true to who we are, and embrace who we are, flaws and all!

"To learn to be more body positive we need to learn to be true to who we are, and embrace who we are, flaws and all!" Share on X

How do you practice body positivity and being kind to yourself?

In The Mirror: Body Image and Chronic Illness

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!

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

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
woman staring out of a window
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.

Waking After a Night of Painsomnia

This morning, I awoke with a start as the alarm started to blare signalling the beginning of a new day. Except, that my day started many hours before. When the bell began to sound, however, I had only managed to grab a couple of hours sleep.

Why? Because of painsomnia.

Painsomnia is the lack of sleep or inability to obtain sufficient sleep because of physical suffering, like chronic pain. And when living with permanent chronic pain, painsomnia becomes just another symptom of living with a neurological condition.

"Painsomnia is a lack of sleep or inability to obtain sufficient sleep because of pain…it's another symptom of living with a chronic illness." Share on X

The ‘Sick’ Appearance Staring Back At Me

Stumbling to the bathroom due to stubborn and uncooperative legs, I take a look in the mirror. The first thing I notice as I study my appearance is the dark circles and bloodshot eyes. These, a visible reminder of the crippling pain and the subsequent lack of sleep. Neurological disorders, such as the one I live with is classed as being invisible, a condition that is not readily visible to others. As I looked hard at my ashen complexion and the dark circles under my eyes, I realised that I looked sick. It appears that sometimes our conditions are not as invisible as the term suggests.

"I realised that morning I looked sick…our conditions are not as invisible as the term suggests." Share on X
pink flowers make-up bag with benefit brightening and airbrush concealer with hand mirror sitting in front of it
Make-up such as concealer (my current favourite being the Benefit Brightening Concealer which works miracles on my worst days!) allows us to wear a mask of disguise when feeling the effects of chronic illness. What products do you love to use to create your mask?

A Sick Day?

If I had the luxury of staying at home, then I would have afforded myself a duvet day. A duvet day to allow me the opportunity to provide care for myself. To partake in those behaviours that make me feel better. However, today happens to be one of the two days I am out with my carer. And although I could have cancelled, I had errands that needed fulfilling.

So what could I do?

Well, after battling with my legs to be able to shower and accrued enough energy to get dressed, I grabbed my make-up bag. I snatched my favourite and ever faithful concealer, dabbing it under my eyes to hide and obscure those stubborn bags. I apply a little foundation and blusher to give me some colour, and so I don’t look like an extra from The Walking Dead.

Hiding Behind A Mask

The make-up I apply allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can pretend that I am well. A persona whereby I can inhabit a world of being well. A world in which I am not in constant pain.

"Make-up allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can inhabit a world of being well." Share on X
image of freddie mercury with lyrics from 'the show must go on' written underneath
Lyrics from the amazing ‘The Show Must Go On’ by Queen. One of my all-time favourite songs and lyrics which I am able to relate to when experiencing a bad flare day!

But we don’t put on a mask purely for vanity reasons. We also assume a different persona in consideration for those around us. We put on a brave face, hiding pain and the effects of other symptoms to alleviate the worry and burden on those closest to us. When out in the world, conversing with those we don’t know or don’t know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike.

"When out in the world, conversing with those we don't know or don't know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike." Share on X

There is always a worry that we focus too much on our illness and its symptoms. A concern that others may think we sound like a broken record complaining about pain and everything else that accompanies illness. Therefore, the most natural path to avoid this is to mask the pain and discomfort that coexists with our ailments. There is also something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy. There is a word for those who hide their pain behind a smile; this is ‘eccedentesiast’. And those of us living with chronic pain and illness we become masters at this.

woman holding a clear glass jar in the shape of a head in front of them
Living with chronic illness and chronic pain we become masters of disguise; hiding behind a mask to disguise the effects they have.
"There is something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy." Share on X

The Need of a Mask to Hide Pain and Illness

Pain and chronic illness are a permanent fixture in our lives, however, and as such wearing a facade is challenging to maintain day after day. But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior.

"But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior." Share on X

If you look closely, you can see the pain etched on my face by the grimace that appears. By the fake smile that I give which doesn’t reach my eyes. The dullness that is apparent in my eyes; the lack of sparkle or brightness that is recognisable when pain isn’t present.

Sometimes Hiding Behind A Mask Doesn’t Work As It Begins to Slip

When our masks slip, and the pain and the emotional effects of illness are exposed, it can make us feel vulnerable. We fear the judgement of others; worry that they will misunderstand the tears as a sign of depression. Or we are insecurely waiting for those well-meaning comments regarding the need to remain positive in the wake of something they will never understand. Worry that will others see those tears and other visible indicators of pain and illness as a sign of weakness. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness.

"When our masks slip, it can make us feel vulnerable. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness." Share on X
a person holding a red piece of card in front of their face with a frowning face
Sometimes hiding behind a mask doesn’t work as masks slip and the pain and other emotional effects of living with symptoms of a chronic illness are revealed to others, making us feel vulnerable and judged.

Living with a chronic illness, we often already spend a lot of time at home. It in itself can become uncomfortable; itching to want to break free from the confinement and explore the world. But, our homes are often a sanctuary, the one place we feel comfortable to discard the mask and show our truth.

So let us not be ashamed or made to feel weak because of the masks we wear. Let us not feel weak or vulnerable when they slip off to reveal the reality of pain and illness waiting underneath the facade. It is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future.

"Wearing a mask is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future." Share on X

Hiding behind a mask is not a sign of weakness but rather an act of self-preservation.

"When living with a chronic illness hiding behind a mask is not a sign of weakness but rather an act of self-preservation." Share on X
Hiding Behind A Mask
Hiding Behind A Mask Cover Image - decorated mask looking in a mirror
Pin It