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Mindful Realisations

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

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

Everyday Mindfulness, describes it as:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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Surviving the Storm of Chronic Pain

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

The Storm that is Chronic Pain

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

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

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

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

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

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

Living with chronic pain is all-consuming and relentless. Click To Tweet

Living with constant pain is exhausting.

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

The Unimaginable Suffering of Pain

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

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

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

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

Pain is a constant companion, one who dictates how our day will go and what we can do with our day. Click To Tweet

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

The Loneliness of Living With Constant Physical Pain

Pain can make us feel incredibly lonely.

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

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

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

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

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

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

The Storms of Chronic Pain Cannot Be Stopped; Only Weathered

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

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

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

The storm of living with chronic pain cannot be stopped, it is a  storm that can only be weathered. Click To Tweet

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

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After surviving the storm of a pain flare, we are left wondering when the next one will arrive…
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The Magic of Books for the Chronically Ill
In Chronic Illness

The Magic of Books For The Chronically Ill

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

Books and Reading; My First and Lasting Passion

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

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The problem of being a massive bookworm!

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

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

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

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

The Magic of Books When In Pain and Sick

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

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

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

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

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

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

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

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Reading can give you real wanderlust!

Books Are An Escape From a World of Sickness

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

"In books, we can be whoever we want to be.  We don't have to sick, confined to bed and in constant pain.  We can be the hero, the warrior, the woman who eventually finds love and her happily ever after." Click To Tweet "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." Click To Tweet

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." Click To Tweet

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

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

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The Sunshine Blogger Award

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Thank you so much to Cheyanne, a lovely young woman who blogs at Hospital Princess in which she shares her personal journey living with Ehlers Danlos Syndrome and its other comorbid conditions including dysautonomia and gastroparesis for tagging and nominating me.

What is the Sunshine Blogger Award?

It is a nomination given to bloggers by bloggers.  If someone nominates you, it means you’re one of 11 people whom they find inspiring and brings sunshine into the lives of your readers.  If you decide to continue to tradition, then follow these simple rules!

Rules for the ‘Sunshine Blogger Award’:

  • Thank the blogger who nominated you and link back to their blog;
  • Answer the 11 questions the blogger asked you;
  • Nominate 11 bloggers to receive this award and ask them 11 new questions; and
  • List the rules and display the Sunshine Blogger Award in your post and/or on your site

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Questions and Answers
Here’s what The Hospital Princess asked me, and my answers to them:

  1. What inspired you to start blogging?
    It was a remark by an online friend who also at the time was blogging. At the time I didn’t have a concrete diagnosis, but we both suffered from chronic dizziness and after reading some of my personal writing and knowing my story living with an undiagnosed condition she suggested creating my own blog to share my journey and to help myself and others going through a similar experience.
  2. Instagram or Twitter? Why?
    I would have to choose Twitter; I also have an Instagram account but much more active on Twitter mainly because I hate having my picture taken, always highly critical of my looks.  I also feel that I am much more eloquent with words!
  3. If you could choose another “niche” for your blog, what would it be?
    It would definitely have to be writing about books as I am an avid reader.  I have so many books but still always find myself buying more as I discover new and exciting authors and titles within the bookshops that I frequently inhabit.
  4. You can travel back in time. What age would you be?
    I would travel back in time to when I was 16 and going through a tough time at school, suffering from depression. I would give myself a big hug and reassure myself that it will be OK and that these feelings will pass.
  5. Professionally, what are your future goals?
    I have no idea.  At the moment with my health, I am just trying to get through each day.  But I would like to do more writing, either for online platforms or even get published in a magazine.
  6. Who is the biggest supporter of your blog and life in general? How do they keep you motivated?
    Of course, my biggest supporters will always be my parents. But outside of my immediate family, it would be my best friend Aisha who makes an effort, despite her own health struggles to read my writing and my blog whenever I publish something new and has even proofread my writing.  Her support and encouragement always keep me motivated!
  7. What is your favourite song lyrics? Why?
    I find lyrics in the song ‘Do You Hear the People Sing’ from the musical Les Miserables particularly inspiring and motivating.  ‘Even the darkest night will end, And the sun will rise’ is a beautiful reminder that nothing in life is permanent and the pain or the negative feelings we are currently experiencing will pass just as the night ends giving way to a new day.
  8. How do you promote your blog?
    I promote my blog through my social media channels – Twitter, Facebook and Instagram.  I also am members of various groups on Facebook to help share and promote my new blog posts.
  9. Most embarrassing moment?
    I once fell off a stage as I went up to collect an award which was very embarrassing, especially as there is still evidence somewhere as my parents were recording it!
  10. What do you dislike the most about blogging?
    It’s not so much about blogging per se, but it can be frustrating when you take the time to share the blog posts of fellow bloggers, but they don’t return the favour.  It doesn’t happen a lot, but some bloggers don’t even thank you which is frustrating as I think especially within the chronic illness community we should all support each other.
  11. How have you changed as a person since starting your blog?
    Well, I’ve certainly gained more perspective and insight into my experiences with living with a long-term health condition, have become more eloquent when describing my symptoms with doctors and other consultants, which may have helped in getting answers and culminating in a diagnosis.  I have grown in confidence as a writer and as a person.

My nominees for the ‘Sunshine Blogger Award’:

  1. Emmie from ‘Illness to Wellness: A Journey‘
  2. Heather from ‘Dinsoaurs, Donkeys and MS‘
  3. Chiara from ‘The Millennial Patient‘
  4. Amy from ‘Destined2Roam‘
  5. Ash from ‘Finding Rainbows in The Dark‘
  6. Em from ‘That Silver Spoonie‘
  7. Lara from ‘Mummy Seeing Double‘
  8. Jen from ‘Tripping Through Treacle‘
  9. Rebecca from ‘A Punk with MS‘
  10. Caroline from ‘PoTS and Spoons‘
  11. Sarah from ‘A Life Less Physical‘

My List of 11 Questions: 

  1. What inspires your blog posts? How do you come up with new things to write about?
  2. If you had to choose just one social media platform to use for the rest of your life, which would you choose and why?
  3. What fictional character do you most identify with and why?
  4. If you could be one person from history, who you would choose? Why?
  5. What has helped you reach acceptance in your journey with chronic illness? Or do you feel you have yet to reach acceptance?
  6. My latest blog post is about my favourite box sets to binge-watch. What was the last show you binge-watched or are currently watching?
  7. What lessons have you learnt from living with chronic illness?
  8. What blogger or bloggers do you admire the most? What have you learnt from them?
  9. Who gives you strength in your everyday life?
  10. What are your biggest struggles in everyday life?
  11. If you could accomplish anything in your future, what would it be?

Thank you once again to Cheyanne for the nomination! It’s such an honour and so lovely that you thought of me! 🙂

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Living With The Darkness

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All of us will have situations or places that we find difficult; situations that push us emotionally, revealing the depths of our strength and ability to cope with high-stress situations.

Add living with a chronic illness into the mix, and the number of situations or places that we find demanding increase exponentially.  The reasons for the difficulties these places or situations may vary, for some it may be the fear of the ‘unknown’ for example, or even they are a potential trigger for symptoms associated with the condition.  What are some of the places or situations that you find uncomfortable or challenging because of your chronic illness?

One such place for me (could also be classed as a situation too) is the cinema. Especially those large multiplex cinemas that have become so popular, and killing off the small, independent theatres that I prefer.  With its high ceilings, fluorescent lighting and the wide open spaces in their foyers are an enemy to the dizziness and vertigo that accompanies the neurological condition in which I live.

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The Multiplex Cinema – a great enemy of vertigo!

However, with the recent release of the Disney film ‘Beauty and the Beast’ and my intense desire to see it, as the original animated version is one of my all-time favourite films! Which meant that I would have to face the demon that has become the multiplex cinema.

The chain in question is Showcase Cinema, and although in the past I have managed visits to a cinema much further away from where we live, I had decided to try the nearer cinema as yes, it is much closer, but also is more convenient for my needs as a person with mobility problems.

Unlike the cinema, I had visited a few times over the past couple of years; the Showcase is flat and on one level, so no stairs required which are good news for my severely trembling legs.

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Beauty and the Beast. Photo from Disney

The excitement of seeing the film, especially after reading the many fantastic reviews that followed was mixed with trepidation at the knowledge that it would be challenging for the dizziness and vertigo as well as the difficulties that my brain has processing all the visual information.  A couple of times, our plans at going were sadly postponed due to the severity of the pain in legs; pain that left me crying for much of the night and early hours of the morning.

[Tweet “A saying that encapsulates living with chronic illness is “We plan and our bodies laugh.””]

Plans were made to go on a different day, and although the pain was not as severe as before, it was still pretty bad, as well as feeling off kilter.  But then I realised, that there would be no ‘perfect’ day to go and see the film without any accompanying symptoms.

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“People plan, and God laughs”, or the Spoonie equivalent is “We plan, and our bodies laugh!”

If I was going to wait for that one ‘perfect’ day then sadly I might be waiting an extremely long time, or if that perfect day would ever arrive.

As I have mentioned previously, the only predictable thing about living with a chronic illness is the inevitable unpredictability.  The unpredictability that makes scheduling plans so much harder as there is no way of predicting how you will be feeling or what your abilities will look like on any given day.  Then there is the anxiety that symptoms will present themselves when we are out, leaving us in pain and feeling sick when we are supposed to be enjoying ourselves.

[Tweet “The only predictable thing about living with a chronic illness is the inevitable unpredictability.”]

As a result, despite the pain, fatigue, and dizziness I made the decision to brave the cinema anyway.  The symptoms are constantly with me, so I figured that there would be no perfect, symptom-free day to go and face the cinema.  To not go, would be letting my condition win, and this neurological condition has taken enough for me, so why should I let it take away my love for films too?

Despite the positive mindset, I still felt nervous and unsure, but as I went through my handbag, making sure I had everything to take with me, I found a great quote from the Itty Bitty Book Company:
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I did it! I refused to let my condition rule my life, and despite whatever the dizziness and vertigo threw at me I persevered and managed to stay and watch the entire film (which was brilliant and visually beautiful).  It’s strange the strength we have to endure such symptoms and the ability to stay in those situations which are also our triggers juxtaposed with our feelings of weakness.  But one of the reasons why I wanted to share this was to remind everyone struggling with symptoms and living with chronic illness that we are stronger than our conditions.  Our perseverance and tenacity are bigger than our symptoms.  As the above quote reminds us, we can do this (whatever this proves to be).

Sitting there amongst the rest of the audience, I had moments however of feeling entirely alone.  Consumed by feelings of dizziness, and the effects of vertigo while everyone else, including those with me, made me feel alone and isolated, serving me a reminder of how different I am compared to everyone else as well as the tremendous impact that living with a neurological condition has on every facet of our lives.  But again, thanks to the power of social media I realised that I am not alone.  The situations and places that we find difficult and the symptoms they evoke may look different for each of us, but the emotions and feelings they invoke are the same.
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But from going, I also learned some lessons that may help me in future visits, for example, I may need to sit higher up in the movie auditorium as I found that to see the screen properly I had to tip my head back which can be a trigger for vertigo.  Therefore, by sitting further back, I will be in the direct eye line of the screen.  Coping strategies are also needed when facing situations that can trigger symptoms, so it is imperative to find what helps you no matter how silly it may seem to everyone else.

Why I found that inner strength to decide on going to the multiplex cinema, which only leaves me feeling dizzy and nauseous is also perhaps to a new level of acceptance that I have developed since being diagnosed with a neurological condition.

Acceptance which allows me to live alongside my condition and its accompanying symptoms instead of running away and avoiding those situations that trigger the onset of my symptoms.
Now that I faced that of what I was avoiding, I am determined to go again and again and recapture my love of cinema and film.  I am taking back control of my life, playing by my rules and not that of the neurological condition I live with, but which doesn’t have me.

[Tweet “Chronic Illness is something that I live with, but which doesn’t have me.”]

I hope that you too find the strength and courage to face something that you might have stopped doing.

I know you can do it!
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