new year Archives

In Chronic Illness

The Pain of New Year When Chronically Ill

January 17, 2021 7 Comments

As the clock strikes midnight on the 1st January, it so heralds the beginning of a brand new year. A new year offers the chance for a blank slate, new beginnings and exciting prospects and opportunities. However, when living with a chronic illness, the start of a new year can give rise to pain and uncertainty.

As January arrives, it is a time to celebrate the end of one year and the beginning of another. And a new year promises a fresh start and new beginnings but often not for those living with chronic illness. Photo by **Olya Kobruseva** from **Pexels**

"A new year offers the chance for a blank slate, new beginnings and exciting prospects and opportunities. However, when living with a chronic illness, the start of a new year can give rise to pain and uncertainty." Share on X

New Year, New Beginnings – But Is it?

New year, new beginnings, new year resolutions, new year and new me. The end of one year and the beginning of another can evoke great excitement and anticipation as thoughts preoccupy on ‘what’s next’? It provides an opportunity for self-reflection and self-improvement, which is when people with the best intentions set goals and make resolutions.

But when living with chronic illness, there are no new beginnings. Illness and its symptoms ignore the calendar, paying no attention to the date and with no care if it’s a holiday or a day of celebration. Symptoms appear leaving plans in disarray or left unable to engage with festivities along with everyone else. Often, chronic illness symptoms ruin the well-made plans of birthdays, Christmases and even appear during long awaiting holidays.

The new year and the future in general often leads to feelings of anxiety and apprehension as I reflect on previous years and realise how my life has changed for the worse as illness continues to progress and worsen.

However, after many years of living with FND and its cruel effects, and the more my life changes, I only feel apprehension and a sense of anxiety as a New Year approaches, and when looking to the future. I can no longer feel excitement for the forthcoming year. I cannot envision the potential new experiences and opportunities that so many can when looking to the future.

"After years of living with chronic illness, and the more my life changes because of it, I only feel apprehension as a New Year approaches, and when looking to the future. I can no longer feel excitement for the forthcoming year." Share on X

Instead, as I sit and reflect on the year that has passed, I can only envisage the worsening of the symptoms that constantly plague me; how I am worse now than the previous year. And forced to acknowledge the new limitations that have befallen me, and the abilities and such that illness have stolen from me. And as I look to the future, fear and apprehension begin to unravel as I can only fret whether there will be a further progression in my symptoms. As well as worry about what this disorder will take from me next.

"As I sit and reflect on the year that has passed, I can only envisage the worsening of the symptoms that constantly plague me; how I am worse now than the previous year." Share on X

New Years Resolutions: Symbolising The Unpredictability of Chronic Illness

As a new year emerged once more, my social media feeds began to fill with the resolutions that friends and acquaintances promised themselves they would keep for the year. The vow to lose weight, stop smoking or find that dream job they wish for themselves. Making changes allowing for self-improvement and progress in life.

As I reflect on my life with chronic illness, however, I realise that it is not feasible to make such vows. I often promise myself that I will accomplish something, only to have the unpredictability of my illness thwarting my intentions. I often go to bed telling myself that tomorrow will be the day that I get up early to do that thing I’ve meant to do only for tomorrow to arrive and I’m unable to get out of bed because my legs refuse to function. Or I’ve found that I’ve slept through my alarm after a restless night battling debilitating pain and excruciating muscle spasms.

The new year is also the time of the year when we tend to make resolutions, or goals on what we would like to achieve during the year. Difficult to make when living with such unpredictability like a chronic illness.

"As I reflect on my life, I realise that it is not feasible to make such resolutions. I often promise myself that I will accomplish something, only to have the unpredictability of my illness thwarting my intentions." Share on X

As I fail to accomplish my goals, I only begin to feel bad about myself, beating myself up for not doing so. It makes me feel like a failure. And so I do not make such resolutions as I do not need or want the additional, undue pressure.

As Every New Year Passes There Is No Change; Still Enduring The Same Symptoms

For some, it might be ‘new year, new me’ but when living with a chronic illness, there are no new beginnings or a new self. Life and the symptoms that accompany illness continue to be unpredictable. There is no time or room to establish a ‘new me’. All my time and energy seem to concentrate on enduring the relentless, debilitating symptoms that are wreaking havoc upon my body. Trapped in limbo, never knowing when it will end, or when my body will allow me to function enough to be able to accomplish anything.

"For some, it might be 'new year, new me' but when living with a chronic illness, there are no new beginnings or a new self. Life and the symptoms that accompany illness continue to be unpredictable." Share on X

Self-improvement and progress are hard to achieve when symptoms continue to worsen. I have often found that I have taken one step forward toward progress only to be forced two steps backwards. Reflecting on the years of living with illness, I can only envisage stagnation and decline. And with no signs of improvement or progress.

Revealing The Best Way to Live Life Is To Let Go of Expectations

A lesson that living with chronic illness has taught me is that expectations often lead to disappointment. After every new prescription or new treatment leads to an expectation of improvement and recovery. But this expectation only led to disappointment as they fail to improve the symptoms that they’d promise to benefit. The promise of a sign of improvement only leads to disappointment when it does not last.

I may have to let go of expectations, but still, I can wish for magic and look for ways to reinvent myself despite the adversity thrust upon me by the relentless symptoms of FND. Photo by **Olya Kobruseva** from **Pexels**

"After every new prescription or new treatment leads to an expectation of improvement and recovery. But this expectation only led to disappointment as they fail to improve the symptoms that they'd promise to benefit." Share on X

Living life with a chronic illness is overcoming the expectation of how you imagined the year was going to be (as well as the rest of your life). And more importantly, it is gauging how to reinvent yourself alongside such adversity to live your best life despite it.

"Living life with a chronic illness is overcoming the expectation of how you imagined the year was going to be (as well as the rest of your life). And more importantly, it is gauging how to reinvent yourself alongside such… Share on X

Living without expectations allows you to be open-minded; and welcome uncertainty and surprises, good or bad. Letting go of the idea that we have control over what happens to us. Life with FND has taught me that unfortunately, I have very little control of my life and body. Sadly, I am continuing to learn its symptoms have much more control than I would like.

It means going along for the ride, whatever it has planned. Life with a chronic illness is far easier when we can roll with its punches, rather than be defeated by them.

Gracing The Future With Hope

As much as living with chronic illness and its symptoms is a colossal endurance race. But, there is also tremendous endurance in living and surviving chronic illness and chronic pain. I am often unable to acknowledge, but I continue to survive the many ordeals it throws at me. One of the most surprising things I have learnt is that as much as FND steals from me, there is still so much that it cannot take from me.

"As much as living with chronic illness and its symptoms is a colossal endurance race. But, there is also tremendous endurance in living and surviving chronic illness and chronic pain." Share on X

There is still so much joy and wonder to experience despite such adversity and suffering. And that wildly positive and infinite things are still possible despite evidence to the contrary. Despite the continued struggles with illness, I will try gracing the future with hope and strength. And gracefully accept the unknowns and uncertainty that illness compels.

I am going to try and grace the future year with hope, positivity and strength despite the continued struggles from the severe, debilitating symptoms affecting my life.

I will continue to give up on making resolutions and plan small things that I can control. Plans such as what book I will read next, or what chocolate I will devour tonight for my weekend treat!

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. In January, I have chosen to write about the pain and uncertainty that the New Year can provoke for someone living with chronic illness.

In Chronic Illness

2018: A Year to Cultivate Resilience

January 3, 2018 No Comments

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.

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?

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.

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.

Wish me luck on my journey of discovering resilience!

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

In Chronic Illness

2017: A Year for Grace

January 6, 2017 No Comments

2017 is, many would argue is finally upon us.

It is the time for new calendars, new diaries, and for many the promise of a fresh start as if January 1st provides a clean slate, erasing all of our past mistakes and bad habits. As if the turn of a date on a calendar assures us that we will become entirely new and improved people.

It is also the year when lots of people make ambitious and unrealistic new year’s resolutions which will inevitably be broken before the beginning of February.

For those of us living with chronic illness, however, making new such resolutions can be especially difficult as, well, our lives are completely unpredictable. We wake each day not knowing how we are going to feel that day, or what we will be physically able or unable to do. One day we can be living a seemingly normal life, running around doing chores whereas we can be in the midst of a flare the next, the only thoughts being how to survive getting through the day.

Some days we are able to live whereas others are about just existing.

scrabble-resolutions — It’s the time for making new promises to ourselves to make us better. What are your resolutions for 2017?

With this mind, therefore, how can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? We may have all the intention in the world to keep such resolutions but when living with chronic illness we are often not in control of our own bodies and instead are governed by the constant symptoms we endure. Are we setting ourselves for failure by making such unrealistic expectations? Could it also affect our already fragile confidence if we do indeed fail in these unrealistic expectations for the new year?

A new recent trend advises forgetting to make New Year’s Resolutions and to instead focus on just one word that sums up who you want to be or how you wish to live your life. The word, if given full commitment can not only shape our year but also the person we become. The word chosen is said to be a compass which can be used to direct our decisions and guides ultimately how we live day-to-day.
My word last year was HOPE. Although many people would describe me as a positive person, I often felt that hope was out of reach because of the effects that living with a neurological condition was having on my life. I wanted my life to be about hope; focusing on the positives instead of dwelling on life with chronic illness. To be able to appreciate and embrace the small joys of life and celebrate the achievements, however small.

This year my chosen word is GRACE. Life with a neurological condition for me personally continues to be challenging and difficult. Every day, the symptoms associated with my condition affect my daily existence dictating what I am or not able to do. And that can be frustrating and burdensome.

According to its many definitions, grace is about being at ease with the world, even when life is arduous such as living with a life-altering medical condition. To live with gratitude; being thankful for what I do have in my life, and being aware of the blessings that even challenging times provide.

Grace, for me personally, is also about kindness – showing kindness not only to others but also to yourself. For those living with chronic illness, we are not always guilty of showing ourselves kindness instead harbouring feelings of regret and repentance of things we are not able to do or for cancelling plans whilst we are in the midst of a flare. Often we harbour feelings of resentment towards our conditions, wishing them away and yearning to be ‘normal.’

But what if grace was also the acceptance that life is not always about trying to be a round peg attempting to fit inside the square hole. What if grace is instead about finding our unique and individual strengths whatever our circumstances and despite the personal limitations that each of us is living with and developing those as best we can.

Grace is finding purpose in our lives; doing what we love and loving what we do.

And that is my wish for 2017.

What would be your one word?

In Chronic Illness

2016: A Year of Hope

January 10, 2016 No Comments

Presents have all been ferociously unwrapped, the Christmas decorations have been taken down, and 2015 has been erased to make room for a new start that 2016 promises us.

Just like in the sand, 2015 is being erased to make way for 2016

It’s been a time of reflection, in which we acknowledge the people, events, and the changes that helped to define what the year has meant to us, as well as a time to look forward to the future and all the hopes and possibilities that it may bring.

In my notable absence from blogging, I have been experiencing some of the lowest points in my journey of living with a neurological condition. The pain and trembling in the legs has been so bad that it has almost overpowered everything else; overpowered in a way that concentrating on anything has been increasingly difficult. There have been so many moments that I wished, like a faulty computer I could simply press CTRL+ALT+DEL to reboot my troublesome limbs.

Consequently, most of the Christmas period was spent on the sofa, doing my shopping online and enjoying the overly cheesy and sentimental films that the festive season brings. Of course, all of these festive films are all essentially different versions of the same clichéd premise: chaos ensues into the lives of the film’s protagonist only for it to eventually remind them what is important in life as they emerge from it a better person.

It's A Wonderful Life is the ultimate Christmas film — It’s A Wonderful Life is the ultimate Christmas film

Furthermore, these Christmas films, also emphasises the importance of hope. The hope for a happily ever after. The hope of children that the myth of Father Christmas is real, as well as the hope of presents under the tree on Christmas morning

The concept of hope and acceptance is important in the chronic illness community and one which I have mentioned in previous posts. The hope that despite chronic illness and its limitations upon our lives we are still able to find purpose and carve out a successful and fulfilled life. That is not to say that we all hope for a miraculous recovery or cure from our ails, as this very often the case would be extremely remote, but hope for a better tomorrow despite the circumstances of our lives.

This year I choose hope... — This year I choose hope…

It is strange that before the deterioration of my symptoms within the last few weeks of 2015, I had thought I had reached acceptance of my condition and wore hope like a badge. However, like items such keys or our mobile phones, hope and acceptance can become mislaid and we are once again navigating the ‘stages of grief’. It is a continuous cycle of ups and downs in which our journey to acceptance starts again and again.

We are now at that time of year when New Year Resolutions are made and trying to be kept! Often these resolutions are not meaningful, unattainable and are completely out of reach of our expectations. But what if we focused on how we would like to feel during the year instead of what we would like to achieve? By focusing on our ‘core desired feelings’ we are much more likely to achieve our goals (if these goals are consistent with how we want to feel).

Many people are doing this by creating a ‘one word‘ for the year. A word to focus on every day for the 366 days of 2016. One word that perfectly epitomises who we want to be or how we want to live our lives. The choice of the word is important as for the year, it will become a compass in life, as it directs your decision-making and guides you through each day.

My word for the year is…HOPE.
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I had thought that HOPE is something that I live with every day, as I live with the neurological condition. However, after reflecting on this last relapse, and its effect on my emotional health, I realise that like many other people experiencing difficult times, hope is something that I feel is out of reach.

However, during 2016 I would once again like to pick up the torch of hope and run with it for the duration of the year and through the finishing line at the end of this year. Yes, hope is often difficult during the trying days with a chronic illness. But I also think that hope is an important word for those navigating life with chronic illness, as if one has hope then it can lead to many other things, such as acceptance and peace for example. William Wordsworth once said ‘not without hope we suffer and mourn’, and I for one agree as in the times I have been without hope during my own personal journey with illness, life was much more difficult; mourning for an old life that was no longer mine to live.

This year, I intend to focus on the positives despite living with a long-term condition. To appreciate and embrace the small achievements made and accept that these small steps have an impact no matter how insignificant, and furthermore to see these small steps as building blocks to bigger achievements.

I am starting this new positive and more hopeful outlook by creating my own ‘happiness jar’ in which I am going to write all the good and positive things that are going to happen during the next year. These notes will be then placed in the jar and on New Year’s Eve, only then I can open the jar and marvel at all the wonderful events that have shaped the year.

I would also like to see this year as a blank slate. To not look at the past failures and bad times that 2015 saw, and get caught up with the things that I did not achieve, but rather see the new year as a fresh start, with endless possibilities and opportunities to explore.

And as I experience bad days due to unrelenting symptoms, I will focus on my one word and remember that it is just a bad day, but it does not have to mean that the entire year will consist of days like them. I will focus on hope and move forward with life; neurological condition and all,

What is going to be your word for 2016?

In Chronic Illness

The sound of illness is often silence…

January 7, 2015 No Comments

When living with a chronic illness, any chronic illness there are of course many symptoms that we are forced to live with as a consequence. Both physical and psychological effects of living with a long-term health condition such as the neurological condition that I live with everyday. Perhaps one of the most significant and common psychological repercussions of living with a chronic illness, which is not always discussed is loneliness.

Loneliness is often discussed in relation to the elderly. It is often seen as a consequence of getting older. However, loneliness is a feeling that can strike at any age and whatever the personal circumstances of the individual concerned. In my personal experience, through personal experience and with engaging with those within the chronic illness and the ‘spoonie’ community, loneliness can also be very much evident when living with chronic illness. Not only is loneliness is felt in terms of living with a chronic illness itself, in the feeling that no else understands what it is like with living with such an illness. However, loneliness can also manifest itself in the physical sense – the lack of company. One often consequence of being diagnosed with a chronic illness, is that friends can disappear from our lives. Many cannot handle seeing a friend being in pain, or cannot understand when plans are often cancelled due to the onset of debilitating symptoms. Living with chronic illness can often result in many hours spent alone in our homes. Hours spent lying in bed or on a comfortable sofa. Hours spent binge-watching boxsets, often because a lack of other options and to fill the deafening silence that surrounds us.

Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness — Holidays are a time where loneliness and isolation feels more evident when living with chronic illness

Being alone is something that I routinely have to deal with as my parents are often working and have few friends living nearby that have the time to visit and keep me company on those days in which my symptoms are particularly bad. It was on New Year’s Eve and New Year’s Day this year however, the feeling of loneliness and isolation was particularly evident. Like previous years, I celebrated the start of New Year alone, whilst my parents were sleeping upstairs (both were unfortunately started work early the next day) and as I had no contact with anybody and no-one had bothered to phone or text me to wish me a Happy New Year the feelings of loneliness were exacerbated. I felt jealous whilst watching the live New Year celebrations on television and seeing those people who were friends and family for the night meant for celebration, whilst I was sat on my own. The first day of a brand new year also started on my own in an empty house with only a dog whose only interest was sleeping. As cards drove onto our street and emptied with the arrival of visitors to other houses in my street, I felt even more alone and felt incredibly low.

It’s frustrating living with a neurological condition like mine. Due to the symptoms which are particularly debilitating such as the dizziness and weakness in the legs (which are unpredictable and it’s not known when they may give way), I am not able to get out of the house alone. Therefore, as a result it makes it even more difficult to be able to go out and make new friends. It’s as if my neurological condition has torn down bridges between myself and the life that I want to lead, and instead has built a wall around me, trapping and confining me.

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It is of course, easy to make online friends or even penpals which I have been trying as a way to quench my thirst for human interaction and companionship. These are great substitutes and an easy way to make new friends, but I still crave face-to-face interaction with someone around my own age over a cup of hot chocolate. Isn’t that we all want in life? Plenty of friends that we can count on during the good and bad times in our lives? How to achieve that when living with an illness that prevents you from leaving the house unaided is still a huge question that remains.

Although that I hope to gain new friends during the coming year, and hoping that I will have people to celebrate the start of 2016 with…