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A Month of Life & Chronic Illness

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After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’

The prompts for this month are:

  • Adapting
  • Practicing
  • Realising
  • Celebrating
  • Inviting

Here we go…

After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms.  But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.

I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you.  But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition.  Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.

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Acceptance is a journey and not the destination.

In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years.  Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms.  I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.

In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy.  The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.

Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life.  It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.

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The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain.  Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances.  When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition.  But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.

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And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings.  But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!).  It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.

It is little victories like the theatre trip which I am celebrating this month.  It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives.  Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration.  I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.

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Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

To end, I think I would like to invite more opportunity into my life.  Perhaps, by expanding my writing beyond the blog.  Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know!  Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle.  Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know.  But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.

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2018: A Year to Cultivate Resilience

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Again, we have just bared witness as tour diaries turned the page over into a brand new year.  And as such, we begin to reflect on the previous year and make plans for the next.  With the best intentions, people make resolutions only to break them before the end of January.

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When living with a chronic illness, however, life becomes unpredictable.  Every day we wake up, never knowing how our bodies are going to behave that minute, hour or day.  We never know how we are going to feel one minute to the next.

As a result, making resolutions to us seems to be futile. How can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? By doing so, are we setting ourselves up for possible failure by making unrealistic expectations?

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Last year, therefore, instead of making such demands on my life, which due to my fragile body I may not be able to accomplish, I come up with a ‘theme’ for the year ahead.  One word that reflects how I wish to live my life and be a reflection of the type of person I want to become.  The chosen word is said to be a compass to help direct us to make smart decisions as well as a guide to the best way to live life day-to-day.

It is now my third year in choosing a word of the year.  In 2016 my chosen word was hope, and my word for 2017 was grace. 

I had been having a hard time, however, of choosing a word to help direct how I wanted me and my life to become.  Inspiration came this morning when the weakness in the legs consumed me and was unable to get out of bed.  It is unfortunately not an uncommon experience for me, and such ‘attacks’ have even known to last all day.  The strength and function of my legs returned a couple of hours later and was able to get out of bed.  Then Eureka, the word came to me – resilience. 

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Resilience is defined as “the capacity to recover quickly from difficulties.”  It is a quality in which a person rather than letting failure or obstacles defeat them, they find a way to overcome such stumbling blocks and rise from the ashes.  When living with a chronic illness, resilience is also about learning to recognise and accept that life with an illness is much like riding a rollercoaster, with many ups and downs.   Secondly, it is about learning coping strategies to acquire the strength and ability to take the ride. Then, an action plan can be put in place to help ourselves better cope with the challenges caused by chronic illness.

Some say that resilience is a quality that I possess in great supply.  These people see a person who despite everything a neurological condition throws at her, she still manages to get up and get on with life.  But, then again I don’t have much choice.

But emotionally when dealing with setbacks and the upheaval of coping when the symptoms are at its worse, then I somewhat of a mess!  The negativity and upset that it causes impacts on my internal dialogue, my behaviours and my self-worth, and leaves me feeling depleted and flat.  So, resilience is my word for the year as I want to learn to be more conscious of how life with this neurological condition is impacting me and to decide how I want to react.

Emotionally, I want to be able to bounce back quickly after confronting such debilitating symptoms. To not dwell on the negative and instead more productive ways to cope when these do occur.

I am starting my journey to resilience by keeping a ‘joy jar.’

Every day it is going to be my mission to write something that gave me joy, or that something that I managed to accomplish despite the limitations that the neurological condition places on my everyday life.  I can look back on these little notes of joy, positivity and encouragement on the awful days and allow myself to remember everything that I able to do instead of focusing on what I cannot or no longer able to do.

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Wish me luck on my journey of discovering resilience!

What is going to be your ‘one word’ of the year?

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Being A Prisoner To Chronic Illness
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Being a Prisoner to Chronic Illness

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Being A Prisoner to Illness

Loneliness. Isolation. Solitude.  Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.

Not fitting in

"Loneliness. Isolation. Solitude.  Three words that I would describe life with chronic illness." Share on X

Having experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years.

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Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

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The Limiting of Symptoms

It’s difficult living with a neurological condition that affects your perception of the world. Some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.

Feeling pushed out and neglected because of symptoms of chronic illness

We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘All By Myself,’ and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

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I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Prisoner to Chronic Illness

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

"Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life." Share on X

During our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer.  As much as I would like to get out of my ‘prison’ and participate fully in life, it is incredibly difficult.  It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.

At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.

Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!

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Finding Companionship Amongst Solitude

Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations. After being stuck inside the house for so long, it seems that we have forgotten how to converse.

"Netflix is a welcome distraction from the silence and solitude that surround us." Share on X
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The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.

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It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.

"Social media helps with the loneliness and isolation that chronic illness can bring." Share on X

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).

Original Cover for Being a Prisoner to Chronic Illness
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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.

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Living with constant pain is exhausting.

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

The Unimaginable Suffering of Pain

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

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

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

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

Pain is a constant companion, one who dictates how our day will go and what we can do with our day. Share on X

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

The Loneliness of Living With Constant Physical Pain

Pain can make us feel incredibly lonely.

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

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

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

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

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

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

The Storms of Chronic Pain Cannot Be Stopped; Only Weathered

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

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

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

The storm of living with chronic pain cannot be stopped, it is a  storm that can only be weathered. Share on X

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

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After surviving the storm of a pain flare, we are left wondering when the next one will arrive…
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August 2017 Linkup Party with A Chronic Voice: Missing, Appreciating, Striving, Releasing, Eating

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

  • Missing
  • Appreciating
  • Striving
  • Releasing
  • Eating

Missing: My late dog, Honey 

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

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Appreciating: Books

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

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Striving: Striving for Progress 

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

Releasing: Positive Thoughts 

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

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Eating: Homemade Pizza

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

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