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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 December, I have written what the world learnt about chronic illness in 2020 because of the coronavirus pandemic.

What, a terrible year 2020 has been for us all.

A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many. Never could we have imagined that within the first few weeks of the new year, a virus would sweep across the world, resulting in a pandemic that would disrupt life as we knew it.

2020 was the year of the pandemic as coronavirus swept around the world. It was also a year in which the world learnt about living with a chronic illness – photo by Anna Shvets from Pexels.
"What a terrible year 2020 has been for us all. A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many." Share on X

As we watched the news, night after night, with horror, we witnessed the death toll rising; every statistic representing a family grieving a loved one taken by this cruel and relentless virus. But the virus did not only affect those who lost a loved one because of it, or those unlucky enough to contract it but affected us all.

A Pandemic and A Lockdown

For months we did as the government asked and stayed at home, leaving the house only if necessary. Many began working from home, and parents became teachers as schools shut its doors. Nights outs were swapped for nights in binge-watching the latest offering from our favourite streaming services. Our movements became restricted as the virus continued to spread And we were all forced to adapt to a ‘new normal.’

As the pandemic worsened lockdowns became enforced as the world was forced to close non-essential shops, hospitality establishments and so on

However, for those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness.

"For those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness." Share on X

What The World Learnt About Chronic Illness In 2020

Living With Constant Uncertainty is Exhausting and Overwhelming

When living with a chronic illness, uncertainty becomes closely tied alongside the new title tethered forevermore to your existence. One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day and making it difficult to commit to anything. The symptoms that accompany illness are also uncertain, never knowing when they will next appear; or whether they will improve or worsen over time.

"One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day." Share on X
Uncertainty is something that is deeply familiar for those living with chronic illness, but it has also been something that has been felt throughout the world as the pandemic caused a great deal of it – photo by Josh Hild from Pexels

The current COVID-19 pandemic has created a deep sense of uncertainty and fear that many have experienced because of it. Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness. These worries and the uncertainty regarding job security and finances have been exhausting and overwhelming for everyone during the pandemic. Many people have reported feelings of depression and anxiety during these events, especially with the recurring lockdowns.

"Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness." Share on X

As a result, 2020 has been the year when the world realised how living with constant uncertainty is exhausting and difficult.

Constantly Being at Home Is Neither Nice Nor Exciting

As well as the extremely overused question of, “How are you?” another question often asked is “So, what do you do?” A question that many living with a chronic illness dreads as many of us have to explain why we are unable to work. Instead of encountering judgmental comments, many reply on how enjoyable and exciting it must be to spend so much time at home.

In truth, days are spent behind closed doors enduring excruciating pain and other such horrible symptoms. But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed. And as pleasurable it may sound to watch as much Netflix as time allows, it soon becomes tedious and tiresome.

As the lockdown continued for several months, and we all stayed at home, the world learns that it is not a treat or exciting being confined – photo by Matthias Groeneveld from Pexels.
"But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed." Share on X

But many people reported struggling with the confinement inside the same four walls during the lockdown. Many cried that they had enough of binge-watching entire seasons of whatever show became the latest obsession. Many wished for the pandemic’s quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous.

"Many wished for the pandemic's quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous." Share on X

A Year of Very Little Socialising and a Case of Not Going Out

For those living with chronic illness, a popular meme exists which has become popular on social media. It is one that reads ‘The Bins Go Out More Than I Do.’ During 2020, however, it became a meme that I have seen shared countless of time and nor just by the chronically ill community. For the course of the lockdowns, the reality for the majority was this very predicament.

The reality of living with a chronic illness means that cancelled plans or the feeling of not being able to do what you’d really like to becomes the norm. There exists grief of feeling as if you are missing out on your life. As well as constantly needing to grieve the time you have lost or everything you have missed out on.

"Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family." Share on X

Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family. Or the intense frustration of being unable to do what you want. All of which are too familiar for those living with chronic illness and will continue long after the pandemic has ended.

A Time of Indulging In Social Media and Telecommunication

When living with a chronic illness and experiencing intense, debilitating symptoms, it isn’t easy to visit friends and family. Long days and nights spent alone with only symptoms for company, still yearning for social contact.

Computers were used a lot during this year for keeping in touch with friends and family with frequent Zoom calls! But the world now knows it’s not a substitute for a physical hug!

Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact.

"Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact." Share on X

With months and months of only being able to keep in contact with loved ones via FaceTime or Zoom the world has now realised that social media interactions are not the same as face to face interactions. And never again will people underestimate the power of a physical hug from loved ones.

Anxiety Rearing Its Head When Cutting The Ties of Isolation

From living with a chronic illness, I know that isolation is hard going, but so is escaping it. When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, the comfortable sofa in the living room (when I can reach it) and my thoughts. There is only knowledge of how excruciating the pain has become or the intensity of other such abhorrent symptoms.

"When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, or the comfortable sofa in the living room and my thoughts." Share on X

When the flare subsides, and your body is now allowing you the chance to go out once again, the wonder of the outside world is mixed with terror. Suddenly, going outside and doing things you once did evokes anxiety and worry. It’s as if I have landed on a different planet, everything different and threatening. After being confined for so long, it can feel like you will die when leaving the safety of home. You are not, of course, and you begin to breathe slowly, reminding yourself that this is something you used to do all the time.

Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before. The anxiety we feel because of chronic illness, and theirs is not the same, however. One occurs due to a sickness that already exists, the worry of exacerbating it and becoming worse. The other exists as a result of avoiding becoming ill, the fear of coronavirus affecting so many.

"Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before." Share on X

In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again. It has been a year in which the world learnt a lot about life with chronic illness. Let’s hope they remember the lessons.

"In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again." Share on X

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 keeping with the festive season, December’s post will be about what I would like for Christmas as someone living with a chronic illness.

Ah, the festive season is finally among us. I am sure everyone is busy getting everything ready before the arrival of Christmas Day. The shops are bustling as we search for that perfect present that exquisitely reflects those crucial people in our lives.

Also, it is the time of year when we note everything that we would like to receive from those closest to us. Those material items that we most sought after, in the hopes that they will somehow improve our lives. But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions.

"But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions." Share on X

The truth is, that if we could swap all those Christmas presents that are wrapped under the tree in exchange for everything that chronic illness has taken away, then we would do so in a heartbeat. The most welcome presents being those which cannot be wrapped and placed under the Christmas tree.

Christmas baubles on Christmas tree with presents underneath
Often when living with a chronic illness, what we most want in the world cannot be wrapped and placed underneath a Christmas tree. Photo by Oleg Magni from Pexels

If such a person, like Father Christmas, actually existed then surely the most considerable request on our wish-list would be the restoration of our health and everything else it has taken with it.

"The truth is, that if we could swap all those presents wrapped under the Christmas tree for everything that chronic illness has taken away, then we would do so in a heartbeat." Share on X

Living with the neurological disorder, FND has taken so much away from me. If such wishes were granted these are what I would wish for Christmas:

For Christmas, I Would Like Confidence

A loss of self-confidence is one of many hallmarks of living with a chronic illness. The persistent and debilitating symptoms are beginning to erode our already fragile confidence.

So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies. And as a result, we begin to establish a comfort zone, very often our homes – a place where we feel safe and secure despite the extremely debilitating symptoms.

A loss of self-confidence is one of many hallmarks of living with a chronic illness. And in its place is fear and anxiety, especially everything that is outside of our comfort zone.

Going beyond our established comfort zone, therefore, evokes fear and anxiety. And there is nothing more that evokes fear and anxiety than travelling.

"So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies." Share on X

Although travelling induces excitement for many, for those of us living with chronic illness, it can have the opposite effect. For nothing, makes us go out of our comfort zones quite like travelling.

Being away from the familiar and the coping strategies that help us get through the difficult days can be scary. When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry.

"When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry." Share on X

Travelling hasn’t been on the cards this year, but a trip away is forthcoming for next October. At the time of booking, there was excitement and anticipation. But as I have been experiencing worsening symptoms as of late, my confidence has plummeted. As a result, the thought of travelling and being away from my comfort zone fills me with dread and anxiety.

So, if it were so possible, I would wish for confidence for Christmas. Confidence and self-belief to help with travelling alongside the symptoms and consequences FND bestow upon me.

All I Want For Christmas Is Meaningful and Lasting Friendships

For me, the best part of Christmas is spending time with loved ones. And even better is the time spent visiting, spending time with and bonding with members of the family whom we may not get to see during the rest of the year.

black and white photo of woman staring out of a window
Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

It means so much to me as someone living with a chronic illness, loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

"Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone." Share on X

One Christmas wish, therefore, would be to find deep and meaningful friendships with people I can be myself with, without judgement. To spend time with like-minded people, and bonding over shared interests.

All I Want For Christmas Is Warmth!

This morning as the cold and rain hit me as I stepped outside, oh how I wished for warmth.

Woman wearing white long-sleeved jumper holding hands out towards fire
Oh, how the cold and wet weather makes me wish for warmth, especially as it can often exacerbate already debilitating symptoms.

The Winter months, with its searing cold temperatures and lashings of heavy rain, can be difficult for this living with chronic illness and chronic pain. Why? Because such conditions increase the severity of many symptoms associated with chronic illness, and especially that of chronic pain.

And now as the freezing temperatures and icy cold rain has seeped right into my bones, I long and wish for warmth!

All I Want Is To Be Able to Cope

Recently has been a tumultuous time in regards to my health and life alongside FND. Everything has and feels like a struggle. Life lately has felt like it has been about merely surviving instead of living. But I don’t want my life to be like this. I want to live and to thrive.

Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave. For often, the coping strategies that once worked, for some unknown reason no longer do and my already weak legs are scrambling underneath the deep water in a bid to keep me afloat.

"Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave." Share on X

To help keep me afloat instead of sinking below into the depths of despair and continued suffering. My wish for Christmas would, therefore, be appropriate coping strategies, those that work and will help to live and not just survive.

And Most of All I Want Is an Ending

Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives. The eradication of every symptom that accompanies it, having a profound effect on every facet of our lives.

"Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives." Share on X

Unfortunately, however, life isn’t a Disney movie, and life rarely offers a happily ever after. There are no fairy godmothers or those with magical powers that can grant us this one wish.

I suppose, therefore, it is up to us, to find ways to live our lives in harmony with chronic illness. To discover effective coping strategies for ourselves and that help us to live and endure everything that pain and illness throw at us every day. And especially it is up to us to write our own story and to make our own ending.

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, using the prompts to describe the run-up to Christmas from the viewpoint of someone living with a neurological condition. 

De-Stressing 

De-stressing: Verb.  To become or cause to become less stressed or anxious

The holiday season is among us.  A time for celebration, rejoicing spending time with loved ones, and giving and receiving with those who matter. 

However, the season, for many is also a time of stress and anxiety.   

The worry of finding the perfect present for our near and dear.  The growing list of tasks to prepare for the big day as well as the fatigue from this season’s various obligations.

Chronic illness presents numerous limitations that can challenge our ability to enjoy and participate in the season’s festivities.  It is therefore vital to find ways to de-stress to help us survive and enjoy the most wonderful time of the year. 

Chronic Illness presents numerous limitations that can challenge our abilities to enjoy and participate in the season's festivities. Share on X
the advantages of online shopping for destressing during Christmas preparations
Who wants to be laden down with lots of heavy shopping bags when we can take advantage of online shopping.  For those with chronic conditions it makes life much easier as it doesn’t affect our already limited mobility 

For me, one way I have been doing this is taking advantage of online shopping.  Recently I have been struggling with my mobility, and the thought of traipsing around shops searching for that perfect gift fills me with dread.  So, my Christmas shopping adventure has been virtual, taking advantage of online offers and discounts.  And all done in the comfort of my own home, wearing comfortable pyjamas and without the worry of falling over! 

As much as Christmas is a season about giving to others, it is also essential to ensure we take time for ourselves as well.  To seek time for self-care and those practices that provide enjoyment and the chance to unwind from the stress.

It's Beginning To Feel A Lot Like Christmas

To de-stress it’s important to be fulfilled with the festivities that we can enjoy. Instead of being disappointed in the fun and games, we cannot take part in during this season of merriment. 

Savouring 

Savouring: Verb.  To enjoy food or an experience slowly, in order to enjoy it as much as possible 

In the mornings, dark, dreary and very often extremely wet weather greets me as I look outside my window.  Everything seems dreadful and depressing.  Unfortunately, my mobility limits my ability to go out regularly, and particularly at night when my balance worsens.  Therefore, when I do have a rare opportunity to venture out at night, I savour taking delight in observing the beautiful Christmas lights and vibrant decorations that adorn shops and houses.  The twinkling lights and festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights. 

Twinkling lights and beautiful festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights. Share on X
One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights
One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights

I will also savour the opportunities for spending time with close family and friends, especially those who I am unable to spend much time with during the rest of the year because of a lack of time or the great distance between us.  To savour the time spent with those who appreciate my company and who makes me comfortable to be myself.  Those who see me as a person, and not merely as a sick person. 

One of the things I love most about Christmas is that there is so much to savour during the season.  The joviality, the delicious and inviting food of which is plenty and the many moments of spent with loved ones which are more prevalent than any other time of the year. 

Simplifying 

Simplifying: Verb.  To make something less complicated and therefore easier to do or understand

As previously mentioned, this year I am simplifying my Christmas preparations and taking advantage of online shopping.  For someone with limited mobility and suffering from intense fatigue, it makes it easier to search and buy that perfect gift for that special someone.  Very often, it allows the opportunity to send the gift directly to the participant, simplifying the giving process for those who are housebound or cannot stand in the long queues at the Post Office. 

The decorating of the house has also become simplified since my symptoms have worsened.  Instead of the long process of assembling the artificial tree, and adorning the tree with tinsel, twinkling lights and festive decorations, we have since invested in a fibre optic tree.  This takes the time out of decorating and therefore lessens the fatigue that it usually leaves in its wake. 

Resting 

Resting: Verb.  To stop doing an activity or stop being active for a period of time in order to relax and get back your strength 

With so much to do and preparations to organise before Christmas Day arrives, rest is vital for recuperating. 

When living with a chronic illness, we often do this by pacing for and during each activity.   For example, if I am going out, I limit the amount of activity I do beforehand to ensure I have enough energy in my limited supply to do everything that I need to do.  And when I am out, I am careful to limit the amount of the time that I am out and also to consider the amount of energy I am exhausting. 

Resting activities needn’t be boring.  When out and feel my legs becoming fatigued and shaky, I have been enjoying much-needed rest spent in warm and cosy coffee shops enjoying the latest book I have on the go.  It also provides the perfect excuse to wrap up with a snug blanket in front of a cheesy Christmas film.  Or indulging with a favourite Christmas classic.  Miracle on 34th Street anyone? 

Finalising 

Finalising: Verb.  To make a final and certain decision about a plan, date, etc

At the moment I am finalising the last of the presents I have to buy.  One last gift for my Dad.  I like to ensure that I spend the same amount on both my parents.   They both equally do so much to take care of me, that I  make sure that I don’t favour one person over the other.  And so far, I have spent more on Mum so need to find one more for my wonderful Dad.  But that’s the question.  What do you buy a man who has everything?  So if anyone has any suggestions, let me know! 

Due to the many obstacles that symptoms create, I tend not to make plans as they often inevitably ends with disappointment when they don’t materialise.  Especially as of late when my symptoms have been particularly severe.  So perhaps I need to finalise plans for the new year on how to emotionally deal with these setbacks. And to get into a better place in regards to my health.  

Maybe we all need to learn to simplify, rest, savour and de-stress for the whole year round instead of focusing on these during the most special times of the year, such as Christmas. 

We need to learn to simplify, rest, savour and de-stress the whole year round instead for just during Christmas Share on X

I have no idea what this Christmas will entail, but I hope it is a happy one.  And I hope the same for you all too. 

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