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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.

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 January 2020, I will use the prompts to discuss the promise of a new year and new beginnings from the perspective of being still sick.

As I sit here, only a couple of hours before the beginning of 2020; a brand new year, hell, even a brand I am reflecting on the concept of New Years and new beginnings.

Purging The Old, To Make Way With The New

Often, the celebration of New Years and the promise of such beginnings encourages a purge.

The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don’t need, or the negative thoughts or bad habits in our lives.

"The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don't need, or the negative thoughts or bad habits in our lives." Share on X

When living with chronic illness, we do so wish that we could purge this particular set of baggage. And why wouldn’t we? The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives. Illness controls how we feel to what the day ahead of us will resemble, and so much more besides.

"The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives." Share on X

When I look back to my life during 2019, I am unable to find accomplishments or stand out moments. There are no moments that I am proud of, and if asked, I would be hard-pressed to find a highlight of the year. This year has had, unfortunately, a lot more downs than ups.

On reflection, this year has seen further deteriorations in the symptoms that accompany life with FND. The year has seen an increase in the number of falls and its ensuing bruises. And more incidents of being left embarrassed after my legs have given way which has left me lying in a heap on the fall.

So yes, if I could purge the afflictions created by FND and the effects of chronic pain, then I would do so in a heartbeat. To be able to wipe the slate clean, and start an entirely brand new book as we embark on a brand new year.

Seized By Fear Anxiety and Loss of Confidence Because of Chronic Illness

I wish I could grab the opportunities and excitement that presents itself at the beginning of this brand new year. However, recently life has been seized by fear, anxiety and loss of confidence. All are culminating from an increase in the severity of the symptoms due to FND. The loss of confidence has been quite profound during recent weeks and months, as the realisation of the unpredictability of my body has become more pronounced.

"Often when living with the effects of chronic illness and its debilitating symptoms, we can be seized by fear, anxiety and a loss of confidence." Share on X
black and white photo of woman staring out of a window
Living with a chronic illness can result in being seized by fear, anger, anxiety, and loss of confidence, and so much more.

Leaving the house to even go to the most familiar places start to provoke fear and dread; never knowing when your body next is going to fail you – the worry of falling or becoming non-functional when alone, or in an unfamiliar environment.

It’s a hard and miserable way to live. It slowly becomes a life of existing and surviving rather than living. And it’s not a direction I want my life to continue.

New Year, New Perspective?

Amid a new year, and of new beginnings also provides the opportunity for opening the mind to new ways of thinking.

To make a change, I need to change the mantra ‘new year, new me’ to ‘new year, new perspective.’

Yes, last year was complicated and full of challenges and setbacks, but I survived. It may not have always seemed like it, but I got through it.

"Yes, last year was complicated and full of challenges and setbacks, but we survived. It may not have always seemed like it, but we got through it." Share on X

And to appreciate and celebrate those little achievements in the face of such challenges and setbacks. To regard these small accomplishments as small steps toward achieving bigger goals.

A journey of a thousand miles begins with a single step - Confucius

When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time, often extremely tentatively as we wait for the moment our bodies will fail.

"When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time." Share on X

Instead of looking ahead to the next goal, or the next step, there is a need to be present. To learn to enjoy each moment, even among those quiet and banal moments in each day.

To start anew and revamp my mindset, I need to recognise and acknowledge the limitations that are a part of life with chronic illness. And the awareness that the illness may stop me from doing the things that I want in this life. The knowledge that I will experience the frustration, anxiety, anger and fear that comes from living with FND.

But I don’t have to let these limitations drive the next year, the next decade or the rest of my life. I can decide to do the things that I want, but doing it differently to accommodate the limitations imposed by FND.

"We can acknowledge the limitations caused by chronic illness, but it doesn't mean that we have to let them drive the next year. We can do the things we want, but just differently." Share on X

Envisioning The Possibilities

When living with chronic illness, it is accompanied by the many limitations that follow. But that doesn’t mean we have to stop making room for the possibilities of the future. Instead, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us.

"To survive and thrive, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us." Share on X
To live and thrive despite living with a life-changing diagnosis, we must envision the future and its numerous possibilities. To hope that there will be plenty of good amongst the many challenges and setbacks.

And so to survive life with a chronic illness, envisioning hope, and the possibility of pleasant surprises ahead is critical.

Here’s to a fresh new year, and a new decade.

Here is hoping that 2020 is kinder to us all.

New Year, New Beginnings, But Still Sick
January 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.  I’ve decided to take part in this month’s Link Up Party. And to use the prompts to help me look toward the future with life with a neurological disorder.

Dedicating

Dedicating: Verb. To devote wholly and earnestly, as to some person or purpose

This year, I have made it my purpose to dedicate this year to becoming more positive.

Every year, emails start dropping in our inboxes promising a “new year, a new you.” They claim that with hard work, and dedication then we can become a new, improved and healthier version of ourselves. Sounds incredible, right?

A New Year, a New You?

When living with chronic illness and chronic pain, however, a ‘new year, a new you’ is merely a dream. With little to no chance of becoming a reality. Only a few days into 2019 and the crippling nerve pain that shoots throughout my legs has followed me into this year from the last. The promise of a fresh start, already obliterated.

When living with a chronic illness, a 'new year, a new you' is merely a dream with little to no chance of becoming a reality. Share on X

A ‘new year’ is an illusion as when living with pain and illness, as there is nothing new in our lives.

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When living with chronic pain and other debilitating symptoms associated with chronic illness, it can be challenging to find joy and excitement for the new year. Particularly true when the only thing we have to look forward to is life with a chronic illness.

It can be challenging to find joy and excitement for the new year when the only thing we have to look forward to is the effects of chronic illness. Share on X

Following my year of resilience from last year, I am attempting to find the good in each day. And perhaps if I am unable to find the good, then maybe I need to create my own good things. Once again, I am dusting off my ‘joy jar’ in the determination to fill it up with some incredible memories from the year ahead.

The best is yet to come…

I am dedicating this year to positivity!

Establishing

Establishing: Verb. To install or settle in a position, place, business, etc

I was disappointed at the end of last year to find that I had failed to reach my target to read 40 books by the end of 2018.

Anyone who regularly reads the blog, or follows me on social media will know that I am a massive bookworm, and reading is one of my favourite past times. However, symptoms such as pain, and dizziness make it challenging to be able to do so. Other times I am too tired to read, and I fall asleep before my head hits the pillow.

Some of the amazing books I’ve read.

It is the first year, however, that I have been unable to reach my target on GoodReads. Because of this, therefore, it feels that much more of a failure. This year, I am going to establish a routine. To put aside some time for me each night, before going to bed, or time during the day when resting, to sit and read for an hour or even half an hour. Hopefully, by setting some time each day to read, even for just a short amount of time, I will reach my intended target with ease.

By establishing a regular routine and setting time aside each day to read it will help me reach my intended target with ease. Share on X

Breaking

Breaking: Verb. To put an end to; overcome; stop

Yes, I feel frustrated at myself and the symptoms that held me back from completing my GoodReads Challenge for last year. As a result, this year I am going to try and attempt to break from the guilt that emanates from the inability to complete tasks because of chronic illness.

I know that I must do better in accepting that this neurological disorder will forever accompany my life. I know I must ditch the guilt when I am unable to do something, or complete a task, or even I have to say no to something. After all, pain and the other symptoms that we have to deal with every day gives us enough to cope with already.

Pain and the other symptoms that we have to deal with every day gives us enough to cope with already without adding guilt into the mix. Share on X
Dealing with guilt on top of the all the other symptoms we have to continuously contend with uses up energy we simply do not have.

And guilt uses up energy; energy that is already scarce. Discarding the guilt, therefore, will allow that free energy for something else; something we can do.

Guilt uses up energy; energy that is already scarce. We need to break free from the guilt to allow us to use the energy for something else. Share on X

Last year, I also began the arduous task in breaking away from those relationships that were damaging my mental health. To defriend those on Facebook and break free from seeing pictures and statuses regarding events that I failed to be invited to, often not knowing about them until logging on to social media. It’s not because I don’t care about them, perhaps I do too much, and that’s why it hurts. It’s because they don’t care about me.

Strengthening

Strengthening: Verb. To make stronger; give strength to

If 2018 was a year of resilience, then I wish for 2019 to be a year of strength. I want to take steps to be physically and emotionally strong.

Recently, the pain and trembling in the legs have been particularly severe. The weakness is becoming problematic and leading to more episodes of them giving way. As a result, I need to find ways of strengthening the muscles in my legs.

It feels necessary as they continuously feel weak, yet it often seems impossible. The debilitating nerve pain and the constant fatigue just makes the mere idea of exercising daunting and unattainable.

I also need to strengthen my emotional resilience. To not allow the challenges and setbacks to knock the confidence that I have learned hard to regain.

Although I have determined to be more resilient during the last 365 days, does not mean that I am always successful at it. There have been times when circumstances have knocked me off course, leading to feelings of upset and frustration.

I must, therefore, learn to be stronger and not allow setbacks and challenges to enable me to fall into a depression.

Allowing

Allowing: Verb. To give permission to or for; permit

When I am alone, only greeted the sound of silence for company, it is easy to occupy myself with chores. To not allow me to enjoy the peace but to fill the silence and boredom with plenty of activity.

When living with a chronic illness, however, to do so often only leads to increased levels of pain and worsening fatigue. And is something that I am often guilty of, especially since the death of our dog nearly three years ago. I found it was easier to rest and be comforted by her affection when she was around. Now however, I struggle with the quiet and boredom of being alone and I tend to overdo things as a result.

This is the year that I am going to allow myself time to rest without guilt or blame.

This year, therefore, I am allowing myself to relinquish the need for activity and to be kept busy. To let me rest and let me be until the severity of the symptom subsides. To allow my body to recuperate until I am feeling physically better and stronger to be able to do chores.

It is the year for allowing myself to relax and enjoy the solitude by resting without giving in to the guilt.

What are your plans for 2019?

January Link-Up Party with A Chronic Life
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