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picture of birthday cake with candles and underneath text which reads March: A Month of Celebration and Reflecting
In Chronic Illness

Celebrating Birthdays With Chronic Illness

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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.  Because March is also the month where my birthday falls, I thought I would use this month’s prompts to discuss the impact of celebrating birthdays when living with chronic illness.

Failing at Life Because of Illness

Failing: Noun. An act or instance of failing; failure.
2. A defect or fault; shortcoming; weakness

March is a busy month in the household, with both my Mum and I celebrating birthdays during these thirty one days.

Like many living with a chronic illness, birthdays, although as much as they are often enjoyable they can also prove to be bittersweet.

"When living with chronic illness, birthdays can be bittersweet as it is a reminder that we have lost another year to it." Click To Tweet

Birthdays can be a time of reflection. To reflect on the year since we celebrated our last birthday. And reflecting on life, that we have led since our birth, and the life we thought we thought we would have had. As such, it is often a painful reminder that we have lost yet another year to chronic illness.

Living with chronic illness it can feel as though time has frozen; our lives stuck on pause when everything moves fast and everyone’s lives continue unheeded

Chronic illness is like a kidnapper, holding you hostage, unable to escape. It forces you into isolation, with limited access to the outside world. Time has frozen, and our lives are stuck on pause while the outside world moves fast and everyone else’s life continues unsilenced and unaffected by illness’s grip.

"Time can often feel it's frozen. That our lives are stuck on pause while the outside world moves fast, and everyone else's lives continue unsilenced and unaffected by chronic illness." Click To Tweet

As such, we can believe that we are failing. It feels like we are failing; that we are a failure because of everything we are unable to do and failing because of the lack of independence and the need to be reliant on others.

Our minds falsely makes us believe that we are failures; that we are somehow less than because of the debilitating effects of chronic illness.

Succeeding Past The Limitations of Chronic Illness

Succeeding: Verb. To thrive, prosper, grow, or the like
2. To come next after something else in an order or series

However, perhaps we need to change how we view our circumstances.

Instead, of regarding birthdays as a reminder of what we have lost because of chronic illness, perhaps we need to celebrate another year of surviving. That we are succeeding despite the limitations that chronic illness enforces on us.

To acknowledge the successes and everything that we haven’t lost because of our conditions. Often the progress seen when living with chronic illness is slow and can often feel as if we are not making any progress at all.

"We are succeeding over pain and illness whenever we triumph over the limitations they impose upon our life. We are taking control back from chronic illness whenever we achieve anything despite the constraints they inflict." Click To Tweet

But the truth is, we are succeeding over pain and illness whenever we triumph over the limitations they impose on our lives. Whenever we achieve anything despite the constraints that it inflicts we are taking back control chronic illness already has.

Whenever we triumph over the many hurdles blocking our path because of the symptoms of chronic illness we are succeeding despite it

We are succeeding when we decide to make the most of the life we have now instead of wishing we were well, or waiting until we are well until we start to live life again.

This year I succeeded over the neurological condition I was diagnosed with by going on another cruise, making the most of it despite debilitating and excruciating pain. Also, I overcame the anxiety and apprehension that the condition can cause to book a trip to the Harry Potter Studio Tour in London. At times, both were extremely difficult but was proof that I was living my life despite my diagnosis and was stronger than the hold it has over me.

Pausing and Reflecting on Life and on Getting Older

Pausing: Noun. A temporary stop or rest, especially in speech or action
2. A cessation of activity because of doubt or uncertainty

Taking a breath and reflecting on my life, it feels like life is pausing. On hold. It is although life is still the same as it was when I last celebrated my last birthday.

Still, I am persecuted by the same symptoms as last year: no improvement and no progression in other areas in my life. Another year passing, and so does the hope of recovering. When living with chronic illness, it often feels that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant. I desperately want to take back life away from pain and illness. Instead, I feel stuck and disheartened.

"It can often feel that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant." Click To Tweet
woman staring out of a window
Birthdays give an opportunity to pause and reflect on our lives and to the future. Doing so, when living with chronic illness, however, it can often be met with anxiety and apprehension due to the many unknowns

When I pause and look toward the future, I do so with a sense of anxiety and apprehension. I fear whether there will be further deteriorations in the symptoms and my condition that will further erode the little independence I have currently. Wondering what life will look like, often wishing that I sometimes could see it in a crystal ball but worry what I will witness if I do.

"When I look to the future, I do so with anxiety and apprehension. I fear there will be further deteriorations in the symptoms I experience and that they will further erode the little independence I have currently." Click To Tweet

I try and not to dwell on the what ifs, however, and instead try and pause and appreciate on what I do have. To give thanks to loving and supportive parents, that do so much but ask for little in return. The friends in my life both in real life and those I have met online. To welcome and acknowledge the beautiful and heartfelt messages of support and thanks on my blog, and to recognise the impact my words has had on those who have read them.

Deciding on A Path To Celebrate

Deciding: Verb. To solve or conclude by giving victory to one side
2. To determine or settle (something in dispute or doubt)

As I sit in my bedroom, currently disabled by pain and weakness in my legs, and thus affecting my mobility, I am deciding on how to celebrate my birthday next week.

It is hard as anyone living with an unpredictable health condition will know, planning can prove to be extremely problematic. What will tomorrow look like for us?

"I am deciding how to celebrate my birthday…When living with a never-ending condition; however, it can be problematic as we have no idea what tomorrow will look like for us." Click To Tweet

How will I feel on the morning of my birthday? Will the pain, fatigue and mobility problems be kind enough to me to allow me to celebrate as planned?

There are often many different paths we can take when living with pain and illness, and it can often be difficult to decide which to take

These are the questions that we are silently asking in our minds, but have no answers. There are no crystal balls that we can consult to help us decide on a particular path. If I were to browse my diary, so far most of the entries recorded are marked with a question mark. It is a symbol of the many unknowns of life with a never-ending illness.

"In my diary, many of its entries are recorded with a question mark. It is a symbol of the many unknowns of life with a never-ending illness, including our future capabilities." Click To Tweet

It’s not only my birthday that falls during March. My Mum also has her birthday this month, and Mother’s Day also occurs in March. As a result, I am deciding not only what to buy as presents for both these occasions, but also how am I going to buy them. Do I currently have the energy and sufficient mobility to walk around and browse many shops? Or should I forego physically visiting stores and take advantage of the many benefits of online shopping?

Thriving and Not Just Surviving Life with Chronic Illness

Thriving: Verb. To prosper; be fortunate or successful
2. To grow or develop vigorously; flourish

When going through a flare, or incapacitating troubles associated with chronic illness, it can often feel that every day we are merely surviving. But we don’t want to endure; we want to thrive despite the numerous limitations that chronic illness brings with it.

"We don't want to endure and survive; life with chronic illness. We want to thrive despite the numerous limitations that they bring with it." Click To Tweet

But perhaps it only feels that we are merely surviving. Perhaps our minds are deceiving us to make us believe we are just surviving. Maybe we are thriving despite what we are led to believe. We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.

"However, we are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality." Click To Tweet

To thrive sometimes involves letting go of what we cannot control, and only worrying about the battles that we have a chance of winning. Thriving is celebrating the even smallest of accomplishments, and appreciating the sheer effort and courage it took to achieve them.

To thrive with a chronic illness means that we have to let go of everything that we are unable to control and only worrying about those battles that we can win.

To grow and succeed is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain.

"To thrive is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain." Click To Tweet

I am continuing to thrive despite all of the limitations and difficulties that this neurological disorder places in my path. On this birthday I will take the opportunity to reflect on everything I’ve done despite constant and debilitating symptoms. I will celebrate making it to another year. And although this is not the life that I had imagined for myself, I am determined to embrace and celebrate the life I do have.

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Finding Beauty in Life With A Chronic Illness
In Chronic Illness

Finding Beauty in Life With A Chronic Illness

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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. 

As it’s February and generally considered the month of love, I thought I would use this month’s prompts to discern ways we can find beauty and love life  despite the significant cost that chronic illness has on our existence. 

Adjusting

Adjusting: Verb. Alter or move (something) slightly to achieve the desired fit, appearance or result

The first step to rebuilding life in the wake of a life-changing diagnosis is acceptance. Only by accepting the diagnosis can we then move forward and build a happy and content life despite the unwelcome changes that accompany chronic illness.

"Being diagnosed with a chronic illness is akin to being given new puzzle pieces that we have to learn to fit into our personal jigsaw." Click To Tweet

After acceptance, we can then make adjustments to make room for chronic illness into our new life. Being given a diagnosis of a long-term health condition is akin to be handed new jigsaw pieces. These new jigsaw pieces don’t initially fit the canvas that makes up our lives. Therefore, adjustments are required to install these pieces into our life puzzle.

Being diagnosed with a chronic illness is like being handed new puzzle pieces that we have to attempt to fit in with our life.

Life with a chronic illness requires constant adjustments. Adjusting to a never-ending list of symptoms as new ones develop. Adjusting to new medications and the awful side-effects that accompany them. And adjusting to the new and ever-worsening version of ourselves.

"Life with a chronic illness requires constant adjustments. Adjusting to symptoms, new medications and the awful side-effects that accompany them. And adjusting to a new version of ourselves." Click To Tweet

Adjusting to a new identity, the expectations for ourselves all in order to find a new normal.

Hoping

Hoping: Verb. Want something to happen or be the case

When first diagnosed with a chronic illness, we hope that it will go away. That one day we will wake from a deep sleep, and everything will go back to what it once was.

When we realise and accept that this is merely a pipe dream. And after we had made necessary adjustments to find a place for our new diagnosis, hope evolves into something else.

Although we know a cure is never going to materialise, that we will never get better we never stop hoping nevertheless. We hope that there will be improvements, a hope that life will get better regardless of the permanency of illness.

"Without a promise of a cure, we don't stop hoping nevertheless. Every morning, new hope is born. Hope that medication will suddenly alleviate our suffering. Hope that today, our symptoms will not hinder our plans." Click To Tweet
hope spelt out in wooden scrabble tiles
Every morning, new hope is born

Every morning, new hope is born. Hope that today will be the day when the medicine prescribed will suddenly work wonders and alleviate suffering. A hope that although the symptoms are a constant comrade, that their presence will not hinder our plans.

Sometimes it may seem that hope is a wasted endeavour; wishful thinking that may have little chance of becoming a reality. Hope however is much more powerful that we often realise. It allows us to see a light when surrounded by darkness; the light informing us of better days ahead. Most importantly, hope is the thread that allows us to hold on and survive the worst of days.

"Hope allows us to see the light despite being surrounded by darkness; it informs us that better days are ahead, allowing us to be able to survive the worst of days." Click To Tweet

Surviving

Surviving: Adjective. Continuing to exist; remaining intact

When first being diagnosed with a chronic illness and confronted with symptoms, it is tempting to push through and continue as if they don’t exist.

"Pushing through the symptoms of chronic illness can often do more harm than good. Sometimes we need to allow ourselves a 'day of survival.'" Click To Tweet

Often, however, to do so does more harm than good and only serves to prolong the flare. What we need is to allow ourselves a ‘day of survival.’ To let ourselves succumb to the debilitating and unpleasant symptoms and to allow ourselves a day of rest for self-care and recuperation.

a hot cup of tea and a pen resting on top of a journal resting atop a duvet
On the worst days often the kindest we can do for ourselves is to allow us a day of survival for much needed rest and recuperation

A day of recuperation will not be the same for everyone and depends on the preferences of the individual and what the symptoms will allow us to do. But it may include a Netflix binge-watching session, or gaining comfort from a favourite book. Or even the luxury of a warm bath or shower has the power for a moment of indulgence.

It can be a difficult transition to make, especially if we are used to living a busy and hectic life. But when living with a chronic illness, there are days when we are surviving instead of living. Days when we are moving forward at a snail’s pace. But we also learn that this OK,. Allowing ourselves to slow down we are best able to appreciate and be grateful for the positive things in our life, for those that chronic illness cannot touch.

Befriending

Befriending: Verb. Act as or become a friend to (someone), especially when they are in need of help or support

To find beauty and love life again despite the darkness and ugliness that chronic illness unveils it can be useful to befriend our condition. It’s never going to become your best friend, and you will find yourself in many arguments with it, but is going to be something that we will have constant interactions with every day for the rest of our lives. To live a more successful and gratifying life despite chronic illness, we need to better understand it better.

hands making a love heart sign in front of a sunset
We need to learn to befriend our conditions and ourselves for a life living in harmony despite a chronic illness

As such, it’s essential to build an amicable relationship with our illness and our body. To set boundaries, so that we do not make foolish mistakes and trigger or make worse the symptoms that accompany our new permanent ‘friend.’

"Befriending chronic illness allows us to be able to set boundaries and not make mistakes which could trigger our make worse the symptoms that accompany our new 'friend.'" Click To Tweet

In order to live well and in harmony with a chronic illness, therefore, we need to learn our limits, and to know what we can and cannot handle before symptoms makes their presence known.

abstract picture of love spelt out in block letters

And to know and understand what a ‘bad day’ and a ‘good day looks and feels like for us. If we are in the midst of a bad day for example, and we are aware of that, we can, therefore, take steps to better look after ourselves and prevent it from getting even worse.

By learning to befriend and make peace with this new companion in life, also makes it easier to understand and accept the limitations they bring. By understanding and knowing what is happening and why I’m better equipped in handling the emotional fallout.

It is essential for our well-being that we listen to our bodies and that to what it is trying to tell us and act accordingly. Becoming friends with illness is not a cure, however, but doing so will make life with it much more manageable. And allowing us to spend less energy so we can use it on more enjoyable pursuits.

Also, we also need to learn to befriend ourselves in the wake of a diagnosis. To allow us to get to know the new person that the diagnosis forces us to become, and the one who is different to whom we were before. We are of course the same person we were before, but the changes and challenges chronic illness presents we feel different. Befriending the new us allows us to treat ourselves with compassion and love.

"In the wake of a diagnosis, we also need to befriend this new us that chronic illness forces us to become, and different to whom we were before." Click To Tweet

Awakening

Awakening: Noun. An act or moment of becoming suddenly aware of something

After first being diagnosed with a chronic illness, we have a new awakening to the knowledge that life will never be the same. To awaken an understanding of this new diagnosis and how we can feel as well as possible in this ‘new’ body.

"A sudden diagnosis awakens the knowledge that life will never be the same. And by doing so, we need to understand this diagnosis and how to feel well in this 'new' body." Click To Tweet
i am grateful ceramic plaque in the shape of a love heart
Allowing ourselves to feel gratitude awakens positivity

Living with a chronic illness is undoubtedly difficult. There are often many more downs than up. Despite this, however, life with a chronic illness awakens the capability to practice gratitude.

The bad days, which are plenty when living with a chronic illness makes us appreciate those rare days even more. Practicing gratitude and becoming consciously aware of everything we are thankful. Gratitude reintroduces light into our life where chronic illness had previously trapped us in the dark.

"Living with the many limitations that accompany chronic illness, however, awakens a new appreciation and gratitude for the rare good days that we do get to experience." Click To Tweet

And practicing gratitude helps to change a negative mindset into a positive one, allowing us to see and appreciate the beauty in life. Becoming more positive has an apparent beneficial effect on our mental health, and allowing for developing more appropriate coping strategies.

These are just some ways to find beauty and joy in life with chronic illness. How do you see beauty beyond a life with chronic illness? Feel free to share your ideas in the comments.

February Link-Up Party With A Chronic Illness
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Looking Back To Move Forward
In Chronic Illness

Looking Back To Move Forward

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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.  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. Click To Tweet

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. Click To Tweet

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. Click To Tweet

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. Click To Tweet
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. Click To Tweet

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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It's Beginning To Feel A Lot Like Christmas
In Chronic Illness

It’s Beginning To Feel A Lot Like Christmas

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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.  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. Click To Tweet
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. Click To Tweet
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 Click To Tweet

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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Through The Lens of a Flare
In Chronic Illness

Through The Lens Of A Flare

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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.  I’ve decided to take part in this month’s Link Up Party, using the prompts to describe my experience during the latest flare caused by Functional Neurological Disorder (FND). 

Budgeting

Budgeting: Noun. An estimate, often itemised, of expected income and expense for a given time in the future, a plan of operations based on such an estimate.  An itemised allotment of funds, tine, etc for a given period.  The total sum of money set aside or needed for a purpose, e.g. the construction budget.

Often asked to contemplate the word budgeting, many would do so in regards to money and finances.  However, when living with a chronic illness, a more valuable commodity is energy.  Or spoons.

[Tweet “When living with a chronic illness, energy or spoons becomes such valuable commodities.”]

The Spoon Theory is a metaphor created by advocate Christine Miserandino. The metaphor is used to describe the planning that those living with chronic health conditions have to do to conserve and ration their energy reserves to accomplish, well anything. Christine conceived the favourite metaphor after a discussion with a friend.  Her friend had asked what living with lupus was like for her.  To use a visual aid to help with her explanation, Christine handed her twelve spoons and asked her to describe the events of a typical day, taking away one spoon for each activity.  It demonstrates the need to ration the spoons we do use to avoid running out before the end of the day.

[Tweet “During a flare we have to carefully budget the number of spoons we need for the day ahead.”]

During a flare, however, further limits the number of spoons available. And is something that I have been experiencing during this prolonged flare recently.  Even doing a small amount of chores has left me severely fatigued, and a need to recover the next day and sometimes even longer. As a result, I have had to carefully budget the number of ‘spoons’ or units of energy.  If I fail to do this, it could leave me in more pain than I’m already in, or not even able to get out of bed the next day.  It requires me to be strict with myself and my time, putting off some tasks until the next day or even when I’m feeling ‘better.’

spoons a wonderful metaphor to describe the fatigue that comes with living with a chronic illness
Spoons to represent the limited units of energy when living with a chronic illness with each activity removing one from your supply

Speeding

Speeding: move quickly

What a problematic prompt, especially when writing about an experience of a flare.

Speed is not generally something which is present during a flare.  Recently, the trembling and weakness have worsened, requiring to move slowly and methodically to avoid falls or legs suddenly collapsing.  To speed or move quickly, therefore, is not currently in my vocabulary.

[Tweet “To speed or move quickly, is not currently in my vocabulary.”]

The only thing I could come up with, however, is changing into pyjamas!  Anyone who is feeling unwell craves the pleasure of wearing comfortable clothing.  And is there anything more comforting and satisfying than a pair of warm, snuggly pyjamas? As soon as it’s convenient, or even as soon as I set foot in the house, I love to race inside to get changed into my pyjamas.  And this is never more evident than when going through a flare.  During such times, I seem to spend more time in my PJ’s than anything else.

[Tweet “There is nothing more comforting during a flare than getting changed into warm, snuggly pyjamas!”]

The intensity and duration of this flare also seem to be speeding, however.  I sometimes question and fear whether it is just a flare and not a deterioration.

Read more: Becoming Lost During a Flare: Revisiting Acceptance

Slowing

Slowing: moving or proceeding with little or less than usual speed or velocity: a slow train. Characterised by a lack of speed: a slow pace

Ah, yes, slowing is an apt noun for describing life during a flare.

Life seems to slow down while in the midst of a flare.  Days and very often nights are full of debilitating pain and the effects from other horrendous symptoms.  Symptoms so intense and crippling that minutes start to feel like hours, and hours feel like days.

[Tweet “Days are filled with debilitating pain…minutes start to feel like hours, and hours feel like days.”]

It feels that time has paused, and pain and other problematic symptoms are the only things that we can focus on during the present moment.

Physically I have been slowing down also.  The trembling and weakness in the legs have been severe, having an adverse knock-on effect on my balance.  As a result, I have needed to make small and tentative steps when walking around to ensure I don’t lose balance and to protect myself from falling.

Slowing down, in general, is excellent advice for anyone with chronic illness who is experiencing a flare. To learn to listen to what your body is telling you.  To rest when you need to recuperate.

[Tweet “Slowing down is excellent advice for anyone who is experiencing a flare. To rest and recuperate.”]

Living Life Like a Snail
When going through a flare, I tend to move at a snail’s pace!

Evaluating

Evaluating: form an idea of the amount, number, or value of; assess.

I think there is an innate need in all of us to assess how well we’ve done at something.  To ask, had I done my best? Could I have done more?

During a flare, and with more time than I know, what to with or have the energy for I tend to start evaluating everything.  I assess the actions, or rather inactions of the day and the accomplishments (or lack of) and become wholly dissatisfied with both myself and my life.  I start to compare my experience with others and begin to grow depressed, feeling as everyone’s lives have moved forward while mine has stagnated.

Evaluating can both be useful and damaging.  Personal accountability is vital as it gives us greater autonomy over our health.  And evaluating aspects of our health help us with this, as we gain more understanding of appropriate coping strategies.  A better insight of the various signs that tell us of an impending flare.  We learn a deeper awareness of our health condition.  However, it can also be damaging as it has a detrimental effect on our self-esteem and mental health.

[Tweet “By evaluating the pain and what does and does not help makes it easier to manage future flares.”]

While in the thick of this current flare, I had begun noticing that some of the coping strategies that have helped in the past no longer seem to be easing the excruciating pain.

By evaluating my pain and what does and not help calm the burden of it, the better equipped I am to manage future pain flares.

Escaping

Escaping: break free from confinement or control.

I think everyone at some point in their lives has wanted to escape.  To pack our prized possessions and avoid the mundane routines and responsibilities of everyday life.  Escaping to a beautiful, tropical island or inside a film, or anything else a person desires.  Escaping can be enticing.

Living with a long-term health condition, like a neurological disorder that inhabits my existence, escaping can be even more appealing.  To avoid the very knowledge that chronic equals forever.  Escaping the pain, and the other incapacitating and constant symptoms, the treatments and its endless side-effects, and the limitations that exist.

[Tweet “The opportunity to be able to escape debilitating pain is appealing but sadly isn’t possible.”]

Unfortunately, escaping from our bodies and the illnesses that permeates deep inside them isn’t possible.

No exit when experiencing a flare with chronic illness
When experiencing a flare, there are no exit signs or means of escape unfortunately

Can’t escape a flare, however

While in the midst of a flare, however, a yearning for an escape becomes even stronger.  To be able to leave behind the disarming pain, fatigue and weakness and to visit a quiet and serene place where such things don’t exist.  But we can’t.  We can only lie there and suffer the profound consequences of such a flare.  During such times, I find that my only means of escaping are through captivating novels, living vicariously through the stories and adventures of others, or by getting lost in a boxset binge of one of my favourite television shows, or a film that is both absorbing and comforting.  My current favourite boxsets to binge watch are Arrow and Blindspot, two box sets that I’ve added to my already extensive collection.  Or an escape via social media.  Anything to be able to get my mind off the pain, and trembling that is persecuting my lower limbs, and occasionally my entire body.

Flare days often calls for a boxset binge!
Flare days often call for a box set binge as a distraction from pain and other debilitating symptoms. Arrow (S6) and Blindspot (S3) are two of my current favourite shows to watch

[Tweet “The only possible escape from a flare is anything to help distract me from the pain and trembling.”]

Any escape would be welcome, but when experiencing an intense and prolonged flare like the one I am currently enduring, the options are limited; barely being able to move from where we lay.

Of course, I would much rather an escape in the form of a cruise!

Read more: A Chronically (Ill) Boxset Binge.

 

October Link Up Party with A Chronic Voice

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