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In Chronic Illness

Looking Back To Move Forward

January 10, 2019 3 Comments

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.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly) on Jan 6, 2019 at 6:40am PST

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.

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.

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

In Chronic Illness

A Year of Resilience

January 5, 2019 5 Comments

At the beginning of 2018, reflecting on 2017 and the year that I wanted to live, I chose resilience as my Word of the Year.

Choosing a word, or theme for the year ahead is much less rigid than making New Year’s Resolutions. Resolutions are difficult when living with a chronic illness as they are so unpredictable. Symptoms can flare at any time. Even with extreme effort, resolutions are hard to keep, especially when we are too sick or in too much pain to leave the house.

Resolutions are hard to stick to when living with a chronic illness as we are often sick or in too much pain to leave the house. Share on X

When living with a chronic illness, it can be hard to celebrate the New Year as we can often feel that nothing in our life changes; only the knowledge that we will still be sick

Having a theme word for the year ahead, however, gives a sense of direction for plans you wish to achieve. The flexibility to adjust them when symptoms deteriorate, and you are no longer in the position to accomplish your goals. We are less likely to feel like a ‘failure’ when we are no longer able to pursue our given resolution. Instead, we are still able to aspire to our chosen word of the year, but doing so from a different direction.

Having a Word of the Year instead allows you the flexibility to adjust our goals when symptoms deteriorate and are no longer in the position to accomplish them. Share on X

What is resilience?

The definition of resilience is:

the capacity to recover quickly from difficulties; toughness

There is no question that those living with chronic illness and chronic pain face more adversity than most. As soon as we think we are starting to feel better than a debilitating flare knocks us back down. Leaving us unable to get back up again.

Resilience is a necessary skill to possess when living with a chronic illness as it allows us to overcome stumbling blocks instead of allowing them to defeat us. Share on X

It’s a quality that allows people to rise from the ashes. And the strength to overcome stumbling blocks instead of allowing failure or obstacles to defeat them. Resiliency is, therefore, an essential skill to possess when living with chronic illness and chronic pain.

Resilience Quote from Jamais Cascio | Brain Lesion and Me

When dealing with setbacks, or when the symptoms become spectacularly debilitating I retreat. No longer able to locate resilience on the map of coping strategies for living well with chronic illness. No longer able to fight, but to choose to flee, and wanting to isolate and avoid so no one can witness the pain and misery hiding in the darkness.

If there were a map for coping strategies for living well with chronic illness, resilience would be the most crtitical location. Share on X

I wanted 2018, therefore, to be the year when I learned to cultivate resilience. The way we choose to perceive our lives and the pressures that come along with it determines how we handle them. To help change my perception of my situation, I, therefore, need to adapt to how I see my disorder and how it affects me – allowing the ability to change the things that are within my control and get past setbacks without giving in to hopelessness and frustration.

I wanted to work on resilience so I would have a better handle on changing things within my control, and getting past setbacks without giving in to hopelessness and frustration. Share on X

How Have I Helped to Cultivate Resilience In My Life

Acceptance

The first step to building a happier and more successful life despite chronic illness is always acceptance. To accept this new, scary and often frustrating reality, and move forward from there. Even when moving forward feels like crawling, ever so slowly. Even when progress feels elusive, and success feels ever so far out of reach. Acceptance only then makes it easier to care for yourself, preempting your body’s needs and finding solutions.

Self-Compassion

It’s easy when we are feeling ill, and aware of all the jobs that are left unchecked on our to-do list, to feel disheartened. It’s easy to feel shame and guilt. And feel like a failure. We often think that if we only tried harder, we could have achieved it. When we are feeling at our lowest, it’s easier to remember our failures.

What we need, however, is to acknowledge and appreciate our achievements. And the accomplishments do not have to be big, even the small and everyday achievements should be celebrated. After all, when hindered by incapacitating symptoms, every success was hard-earned.

We need to acknowledge and appreciate every achievement as due to the incapacitating symptoms that afflict us; every success was hard-earned. Share on X

Living with a debilitating illness is emotionally and mentally demanding. There are times when we feel we can no longer endure such pain and hardship. Times when we think we cannot survive. It’s during these times when we need self-compassion. To acknowledge these feelings, but to recognise, we have felt this way before.

To be resilient, we must accept our long track record of dealing and surviving pain and illness. Only then can we recognise those coping strategies that have helped us in the past and implement them during future flares.

To be resilient, we need to accept our long record of dealing and surviving pain and illness. To recognise that we had felt this way before and remembered that we survived. Share on X

Remember To Be Grateful

Have you ever noticed how our brains tend to remember negative things more than positive ones? Our brains are hardwired to do so, as it served an evolutionary advantage to help us survive dangerous situations.

Unfortunately, this is now a maladaptive response, as many of the adverse circumstances we face are not life or death. To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. It can help us gain some perspective when our symptoms at their worst, and we think we won’t ever feel better.

To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. Share on X

Hope is hard to find when living with chronic illness. We are often in situations where crippling symptoms physically and emotionally weaken us. But by brainstorming potential ways to improve the current situation and ways to feel better provides a little glimmer of hope; of an improved existence. I have found writing down times when I have persevered despite the limitations I live with reminds me that I am strong enough to pursue the things I may not think I can achieve.

We need support from a compassionate and supportive tribe when in the midst of chronic illness

Get Support From Our Tribe

Friends, family and those within our online support groups are important in providing emotional support during the difficult times. For resilience, it is essential to acknowledge that we often need help, comfort, and someone to give advice. Having someone to understand and support is vital to stave off isolation. This year I have found that having someone to confined in about my fears has helped to reassure and encourage me and quell the anxieties. It has helped me be more positive and resilient as a result.

Has my Year of Resilience worked?

At the end of 2017, and going into 2018, I became lost in my suffering, and the extreme pain I was experiencing. It felt that I had lost the ability to hope, and instead was left with a yearning to give up.

After a long year of reading many books on positive psychology and those on resiliency and working on the techniques above, I am feeling a lot more positive.

Engaging in positive thinking does help change your perspective – it doesn’t cure chronic illness, unfortunately, but it does make it easier to cope and bounce back from the dark days

Every year when a new year dawns, messages of “a new year, a new you” arrive in your inboxes. Chronic illness, however, plays by no such rules, they don’t disappear because the book has closed on the year. We often wish for a new year without the burden of our conditions, but this is merely a dream with no possibility of becoming a reality.

Although we are inundated with messages of 'a new year, a new year' when living with a chronic illness, however, this is a dream with no possibility of becoming a reality. Share on X

My year of building resiliency has taught me, however, that despite the limitations that befall us, life can still be good. It has shown me that we are stronger than we often give ourselves credit for, and there are still many more possibilities that await us. I still have bad days, of course, and days where I want to give up but by using the lessons I’ve learned, I know I can get better at bouncing back. Resiliency is much like a muscle, the more you work it, the stronger it grows.

What progress have you made with your 2018 Word of the Year?

In Chronic Illness

Embracing The Warrior Inside

December 29, 2018 13 Comments

What does it mean to be a warrior?

What images evoke when you think of the word warrior?

Warrior (noun)
1. a person engaged or experienced in warfare; soldier.
2. a person who shows or has shown great vigor, courage, or aggressiveness

For many, when we think of a warrior, an image of a soldier may come to mind. A brave man or woman, in uniform going to war on a battleground far away. Or those courageous men and women working on the front line in the emergency services. Those who run toward danger when many more run far away from it.

soldiers fighting on the front line in war. What we often think when we hear the term warrior — Soldiers fighting on the front line during a war is a classic depiction, and one most people think of when we think of the word ‘warrior’

An image that may not cross one’s mind is one of a person living with a chronic illness.

However, words such as warrior, fight, battle, and war have become synonymous in discussions regarding illness and those living with, such conditions. We’re brave in the face of life with a long-term health condition. And we approach the unknown of everyday life with courage, fighting for a semblance of a life.

"When we think of a warrior, we think of those who run toward danger. An image that may not come to mind is that of someone living with a chronic illness." Share on X

It has become a somewhat controversial subject within the chronic illness community, and which has inspired much debate.

The Problem with Words Such As Fighter, Battle and Warrior

Some reject these warlike rhetoric connotations of illness and those who live with them. For many, their conditions are a part of them. A part of them much like the colour of their eyes or the freckles on their skin. To fight the disease, therefore, is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming.

"To fight the disease is much like fighting oneself. And fighting oneself and hence the condition that afflicts our lives soon becomes exhausting and time-consuming." Share on X

We don’t think of ourselves are brave, courageous or strong when living with a long-term health condition. But we are, and often it’s because of circumstances beyond our control. Often, we are strong because we have to be.

Further, many argue that words such as ‘fight,’ ‘battle’ or ‘war’ are polarising, suggesting that much like their literal meanings, there is a winner and loser. It suggests that if we succumb to the debilitating and often devastating symptoms, it’s because we haven’t fought hard enough. Furthermore, it implies blame upon the person afflicted by the illness.

People voice platitudes such as ‘brave’ to describe our struggles. Although it’s often in an attempt to be supportive, it instead feels patronising, much like being patted on the head like when we were young by distant relatives. In truth, however, we feel far from brave or a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms.

"We feel far from being brave or being a warrior. Every day our lives revolve around getting through the day amidst debilitating and distressing symptoms." Share on X

Are We Warriors?

To us, we are not brave, we fight and survive, not because we are fighters or warriors, but because we have no real alternative.

View this post on Instagram

Wearing my new #necklace today with pride! It reads #warrior which is a word which is controversial in the #chronicillness community with many who do not like or use the word in relation to living with a chronic illness. For many living with illness is not a fight or a war. But recently with the debilitating trembling in the legs, and #chronicpain just getting up every day and doing anything, especially taking up #aeropilates again is a fight. Fighting with my legs and fatigue just to get up and out of bed. Fighting with my legs to stop them from giving way. Fighting for a semblance of a normal life. So yes, living with this neurological disorder often feels like a war and still I am here fighting. I am a #warrior #spoonie #chronicpain #chronicallyawesome #chronicallyillwarrior #chronicillnesswarrior #chronicpainwarrior #jewellery #mantra #chronicillnesslife #chroniclife #FND #neurologicaldisorder #functionalneurologicaldisorder

A post shared by Rhiann Johns (@serenebutterfly) on Nov 15, 2018 at 3:53am PST

After experiencing a prolonged and a crippling flare, however, I am starting to embrace and appreciate the title of being a warrior. Even more so, after a recent trip to the Harry Potter Studio Tour which proved to exacerbate the symptoms.

It was further evidence that I am not normal. That I never will be healthy. I’m in constant pain, constantly dizzy, and a continual trembling sensation consumes my legs. My life consists of numerous falls, many days where I struggle to get out of bed, and plentiful occasions whereby my legs collapse unexpectedly.

Embracing The Warrior Inside

On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality. We are all fighting in ways that only other warriors can understand. We fight to be able to get out of bed in the mornings, struggle through the days, impeded by pain and fatigue. Fight to be able to get out of the house, and fight to be able to complete the errands that await.

"No, we are not fighting in a war. But we are fighting for our lives; fighting for some semblance of normality." Share on X

Yes, there are days when we are defeated — days when the pain, fatigue and the multitude of other symptoms win the battle on a given day. But still, we do not give up. We may not be able to try again tomorrow, but we don’t surrender to the demon that is our illness. Symptoms such as the dizziness and vertigo make it difficult for me to be able to cope with particular places, but still, I have refused to submit to their hold on my life.

Woman carefree and happy existance — We are warriors as we never give up, never surrender and are continually picking ourselves up and trying again

And as much as we fear the symptoms becoming victorious, and becoming defeated by our silent enemies, we never stop trying. We never give up. I am not suggesting that I am a brave or courageous person merely by living with an enduring neurological condition. Being fierce, brave or a warrior does not make you any more likely to beat the disease or the illness that is ravaging inside your body.

The Comfort that Being A Warrior Has

It does, however, help you get through the difficult times. It helps you survive when it seems that you can no longer bear the pain any longer. I attempt those places that provoke such attacks, and sometimes I am unsuccessful, but still, I try again. It brings comfort, the knowledge that if we are fighting against the impact, the condition has, then we are in control and not that which afflicts us. And that is why I bought the necklace. It is a reminder of the many victories I have achieved despite the limitations imposed due to my various symptoms. It is a constant reminder of my strength in the face of illness.

"My warrior necklace is a reminder of the many victories I have achieved despite the limitations imposed by my symptoms. It is a constant reminder of my strength in the face of illness." Share on X

However, it is a motivator. Life with a neurological condition presents a series of challenges to overcome. If we are to prescribe the ‘fight’ metaphor to life with an illness, it can give both direction and motivation. If winning is the ultimate objective, then striving for a triumph over adversity can provide us with the drive to wake up each new day and live with the presence of such monotonous symptoms all over again.

And that is what we do every day. We fight to live. We are warriors.

In Chronic Illness

It’s Beginning To Feel A Lot Like Christmas

December 8, 2018 5 Comments

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

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?

Been very much anticipating the new @jodipicoult book #ASparkOfLight for ages!! Can’t wait to get stuck in with a mug of hot chocolate in one of my favourite coffee shops. A lovely way to spend a wet and miserable Thursday morning! pic.twitter.com/L52cGbMo49
— Rhiann Johns (@serenebutterfly) November 8, 2018

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.

In Chronic Illness

A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness

November 3, 2018 14 Comments

Bravery: the quality or state of having or showing mental or moral strength to face danger, fear or difficulty. The quality or state of being brave

It is not uncommon for others to remark on my bravery in the face of FND. And in defiance of the many symptoms that accompany life with a neurological disorder.

Those closest to me throw words like brave, resilient and strong to describe me.

For me, however, it comes as a shock.

I look in the mirror and am unable to find bravery, or strength in the reflection staring back at me. A reflection whereby I am only able to recognise fear and anxiety etched beneath the surface of my face. I ask myself, can it be true? Could I be brave, despite not feeling it or failing to recognise it in my reflection?

Reminiscing on my last few blog posts and retrospecting on the difficulties I’ve faced has only made me question other people’s perception of my apparent bravery. During a flare, I feel anything but brave or strong. My sole purpose was to survive the day amidst the debilitating symptoms. Why is it that others see courage and strength within me, while I am unable to see it in myself?

"During a flare, I feel anything but brave or strong. Why is it that others see courage and strength within me, while I am unable to see it in myself?" Share on X

We are all told that strength and bravery are essential traits – but what does it mean to be brave? How does it look to be brave? Photo by Heather Schwartz on Unsplash

I came to realise that I have yet to recognise bravery within myself because I regularly feel an overriding sense of fear and anxiety. So intense that it seemingly obliterates the ability to identify with the concept of courage or resilience. Fear and anxiety, however, feel all too familiar, a supposedly permanent byproduct to life with a neurological disorder. Another symptom that we have to learn to grapple with alongside numerous others.

"Fear and anxiety, feel all too familiar, a supposedly permanent byproduct to life with illness. Another symptom that we have to learn to grapple with alongside numerous others." Share on X

Anxiety another symptom of life with a chronic illness — Anxiety is often an additional and unwelcome symptom of life with a chronic illness

I have had to become familiar with all kinds of fear and worries while living with a neurological disorder.

Fear and Anxieties That Accompany Chronic Illness

"I fear the disorder and its unpredictability, always on edge, waiting with bated breath for symptoms to present themselves again." Share on X

One such example is the fear of the disorder and the way it takes over my entire life. I fear the unpredictability of the symptoms; always on edge, waiting with bated breath for symptoms to present themselves again. There are days when I feel relatively well, days where my mobility is OK and getting around is somewhat easy. Other days, however, I am debilitated by pain and other symptoms associated with FND.

Hindered further by fear and anxieties; fear of the impermanence that illness has on every facet of my life. Fear of the permanence of the condition and the huge question mark it leaves in its wake. Fearsome and anxious thoughts wrangle for attention, shining a flashlight on everything that I cannot control.

"Fear and anxious thoughts fight for attention, shining a flashlight on everything I can't control." Share on X

When symptoms do begin their torment of my body and life, so begins a fear of what it means. There is a worry whether these symptoms are the beginning of a severe flare. Or worse, the start of a deterioration in the disorder with which we live. We fear how long these symptoms will last and what our future will look like if they continue. There is fear over potential treatments that we may need as a result, which causes further anxieties such as possible side effects.

Many fears and anxieties accompany life with a neurological disorder.
Photo by Katii Bishop from Pexels

All of these are fears of the unknown. The many question marks that exist when diagnosed with a chronic illness. And as these fears and anxieties intensify, so does the tight knot in my stomach, making me feel nauseous. These intense waves of fear and anxiety only cause further exacerbations with the ongoing symptoms. And as the symptoms intensify, so does the stress, creating a never-ending cycle, one which is difficult to break.

"There is a fear of the unknown when living with chronic illness." Share on X

The Lies They Tell

There are numerous scenarios where these anxieties can take hold, affecting my ability to function outside my limited comfort zone. Many situations that trigger fear and anxiety, symptoms holding me hostage as worries over becoming severely unwell, or suffering a fall become prominent in my mind. Even in places which are deeply familiar, where the layouts of shops or certain facilities are ingrained in my memory also becoming fearful due to the unknown of what is going to happen, catastrophising to the worse case scenarios. Going to new and unfamiliar places, however, can invoke even worse anxiety due to all of the unknowns, and not knowing what to do or the best place to go if the worst happens. As a result, we tend to confine ourselves inside of our comfort zones, limiting ourselves and markedly shrinking our world.

Homes can become like a security blanket — Our homes and places which are deeply familiar to us can become like a security blanket; somewhere where we feel safe despite the symptoms that are tormenting us.

The fears and anxieties tell us that we are not strong enough and that we are unable to cope with whatever our illness throws at us. Our minds lead us to believe that these fears and anxieties are more significant than they are.

"Our fears lie to us, making us believe that we are not strong or brave in the face of illness." Share on X

However, they lie.

Our minds make us think that we are to blame for our illness, to make us feel shame towards ourselves for being weak. I can understand now that this is wrong; illness is something that happens to us, not because of something we’ve done or an inherent character flaw.

"Illness is something that happens to us, not because of an inherent character flaw." Share on X

Anxiety as a Familiar Companion

Fear and anxiety have both been a long companion of mine, has become much a symptom of Functional Neurological Disorder (FND) as pain or trembling in the legs. They feel familiar and have needed help to try and overcome its effect on my life, especially the impact they have on my experience with a chronic illness. Many courses, such as one in Acceptance and Commitment Therapy (ACT) have taught me to change how I react to fear and anxiety. Lessons on how to explore these deep-seated fears and what I can learn from them.

"Fear and anxiety I have become much a symptom of illness, as much as pain or dizziness." Share on X

It is essential to acknowledge the fear and anxiety and to become intimate with them. By doing so, I can now recognise the physical manifestation, the thoughts that accompany them and finally how I respond. Through mindfulness, I have been able to learn so much about my fears and anxieties, and more importantly the knowledge that I do not have to relinquish all control over to them. It reminded me of a famous quote by Mark Twain; “Courage is resistance to fear, mastery of fear, not absence of fear.”

Courage is resistance to fear, mastery of fear, not absence of fear

We are all prone to fear and anxiety in our lives, but what make us brave is feeling those feelings and moving forward regardless. Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us.

"Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us." Share on X

This week, my Mum and I headed to London to visit the Harry Potter Studio Tour. As a big fan of both the books and subsequent films, it has been somewhere I have wanted to visit for some time. However, recently, a lot of my symptoms have worsened, experiencing what has been a severe flare. And as the trip came closer, anxious thoughts began racing through my mind. My mind began to deceive me into believing that I was not strong enough to be able to cope with the impending trip. My mind led me to think that my symptoms and illness is stronger than me. It even tried to convince me; it would be better if I would cancel the trip and not go.

"My mind often leads to believe that my symptoms and illness are stronger than me." Share on X

However, I refused to give in and yield to the demands of either the symptoms I live with or the ensuing anxiety, figuratively sticking two fingers at the intrusive thoughts entering my conscious thoughts. I went regardless and yes, at times during the tour, it proved difficult because of pain, trembling and vertigo. But I did it and enjoyed myself regardless. There have been many instances where I have not been able to go to certain places or do something due to the severity of the symptoms. Have I ever given up? No, I may not go on that day but I dust myself off from the disappointment and my recriminations, and I try again tomorrow (or when the symptoms are less severe).