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

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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).

Courage doesn't always roar..I will try again tomorrow

So perhaps, I am braver than I believe myself to be and validation to myself that I am stronger than my illness.

"We are braver than we lead ourselves to be and are stronger than our conditions." Share on X
A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness
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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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7 ways to cope during a flare
In Chronic Illness

7 Ways to Cope During A Flare

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Medical Definition of Flare: 1. an exacerbation of a chronic disease. Often referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen. A flare is a transient worsening of a disease or condition that eventually subsides or lessens.

One of the most frustrating and stressful aspects of living with a chronic illness is the unpredictability. The never knowing how you are going to feel or any given day.  Never knowing if today is going to be the day when symptoms are going to worsen suddenly.

[Tweet ” Concerning chronic illness, a flare occurs when its symptoms suddenly worsen.”]

We can become hyper-vigilant, analysing every pain or unusual sensation as a potential precursor for an oncoming flare.  It can feel powerless; we control the tiniest aspects of our health we can such as pacing ourselves, ensuring we get enough sleep and maintaining a good diet. But still, we find ourselves in the midst of a flare.

And when we are in the midst of a flare, there is still worry and uncertainty.  Just as we are in the dark as when a flare will occur, it’s also not known how long it will last.  The increased disability, isolation, loneliness, and guilt only add to the stress.  And the longer the flare, the greater these stresses impact us.  However, these stresses can not only be consequences of the flare, but they also have the potential to prolong it.

Living with chronic illness and pain is much like riding a rollercoaster!

Living with a chronic illness and experiencing a flare is very much like riding a tumultuous rollercoaster.  A rollercoaster with many ups and downs, twists and turns, but not knowing when they are going to occur.

[Tweet “Experiencing a flare is like riding a roller coaster – lots of ups and downs and twists and turns!”]

In my last post, ‘Becoming Lost During a Flare: Revisiting Acceptance‘ I discussed the effect that my latest flare has had on not only my physical health but also the impact it has on my emotional health.  The anxiety and loss of confidence that has resulted from the physical and psychological losses that have occurred during this particular flare.  The symptoms have become a thief, stealing little things which are essential to me and help me function within the world around me.

Given that the experience of a flare is negative, how can we survive while going through one?

How To Survive a Flare

Surrender

It’s interesting that this word has such negative connotations.  For many, surrendering means giving up.  The reality is that it means letting go.  Before, acceptance when a flare would occur, I could feel myself tensing, trying to fight against it, to make it go away. Doing so, however, actually had the oppositive effect.  Instead, the flare would fight back, becoming stronger.  By surrendering, we choose to accept the reality as it is in the moment.  And when we accept the reality, we are more likely to take the steps needed to take care of ourselves appropriately.

[Tweet “When we accept the reality, we are more likely to take steps needed to take care of ourselves.”]

Photo by Katii Bishop from Pexels

‘This Too Shall Pass’

As stated in the definition at the top of the post, a flare indicates as a transient worsening.  Transient of course meaning fleeting or short-term.  It will eventually subside.  No matter how many lows there are on our roller coaster, we will ultimately find the highs again.  And we must remind ourselves that during the darkest times; to hold onto hope.

[Tweet “It’s important to remember that flares are fleeting and will eventually subside.”]

Don’t Blame Yourself

When we are experiencing a flare, there is a tendency to look back on what we have done which could have triggered it. To blame ourselves for our current predicament and think that we could have avoided it had we done x, y or z. The reality is, however, that it is not our fault.  Our bodies and symptoms are highly unpredictable with its own rules and agendas; flares are often unavoidable and going to occur whatever we choose to do.  Feeling guilty is not productive and is not going to make you feel better.

[Tweet “Feeling guilt is not productive; symptoms are highly unpredictable with its own rules.”]

And on those occasions that the flare was a result of our actions, we can use it as an opportunity for growth.  To learn from our mistake and to resolve to do better in the future.  Blame and recriminations are not going to help you feel better.  What will help is to return to those self-care behaviours (such as resting) that will ease the burden of suffering worsening symptoms cause.

 Remind Yourself of Your Accomplishments

While in the midst of a flare, we are unable to achieve very much.  Regardless of the size of our to-do list, we are unable to gather the strength or motivation to complete the tasks.  As a result, it can lead us to feel unproductive, as if we are failing ourselves and those around us.  We never, however, celebrate and reward ourselves for which we can do, especially in the face of adversity and limitations.  So, ditch the to-do list and instead make a list of the things you have done despite chronic pain and other debilitating symptoms!  And reward yourself – enjoy your favourite snack or put on a feel-good film.

[Tweet “During a flare, ditch the to-do lists and congratulate yourself on what you have achieved.”]

Create a Self-Care Box

As we never know when a flare will occur, or even how long it will last.  Preparing a Self-Care Box is something you can create beforehand to help you during times of extreme worsening of symptoms. By being proactive and making a plan before its onset, we remove the challenge and stress of coming up with a sufficient self-management plan, which can be difficult when we are in the midst of one.

[Tweet “A Self-Care Box should contain things which make you laugh, to help calm you, and ease suffering.”]

A self-care box should contain various items that comfort and please you; things that nourish your soul and help you cope during times of stress and suffering.  It could include an MP3 player full of songs that help relax and makes you happy.  It could also contain meditation and relaxation exercises which are excellent at reducing stress.  Other items might include magazines and books, inspirational quotes and affirmations, a journal for when you feel well enough to write.  I always add my favourite pair of comfortable pyjamas.  Things to make you laugh, things to make you calm, and ease your suffering. These are all ideas on what to include, but a self-care box should be personal to the individual.

Find Distractions

We all need a break from the chronic pain and other debilitating symptoms. However, when experiencing a flare this can be easier said than done.  As much as you can do, find a break and solace from crippling symptoms through distraction.  Read a gripping book. Watch a mindless TV show or an utterly magical film.  Read articles online about a subject that fascinates you.  A distraction, of course, will not take the pain away entirely but by taking attention away from it, but it might make it easier to manage.  It can also help prevent catastrophising thoughts that can exacerbate symptoms.

[Tweet “Distractions can help prevent catastrophising thoughts which can exacerbate symptoms.”]

Connecting with others also experiencing chronic illness and chronic pain can make experiencing flares easier to deal with

Seek Support From Your Tribe

Attempting to endure chronic illness on your own can be isolating, leading to anxiety and depression.  It can also worsen the already debilitating symptoms, prolonging the duration of the flare.  Reaching out to others for support and encouragement when pain levels rise and symptoms intensify.  Just talking about how you are feeling, and confiding the extent to which you are suffering to those who understand and can help calm the ferocity out of a flare.  Even better is talking to those who also experience chronic illness and pain, and who can prove to be an excellent wealth of information for coping with pain and other symptoms.  Join a support group or community for those living with chronic illness and pain, and be there for others when they are in need of support.

[Tweet “Reaching out to others who understand can help calm the ferocity out of a flare.”]

Those are only seven tips on how to survive a flare, but what are some of your favourite ways to cope when they suddenly occur?  Feel free to add your advice to other warriors below…

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Becoming Lost During a Flare Blog Post
In Chronic Illness

Becoming Lost During a Flare: Revisiting Acceptance

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During my recent foray into revisiting my old posts, I came across this post from five years ago.

In the post, I talk about the importance of acceptance when learning to live with a chronic illness.  It also made me reflect on my current decline in some of the symptoms I experience because of FND.

Once again, the trembling in the legs has worsened.

Significantly worsened in fact.

The Saga of Pain and Trembling Legs

Every day, my legs have felt incredibly unstable and weak, amidst the severe pain that already wracks them.  There is a persistent feeling of incredible stiffness and heaviness.  A heaviness that makes it feel like I am attempting to walk through thick mud.  But, juxtaposed with this heaviness and stiffness is an immeasurable weakness.

A weakness so severe that it continually feels if my legs are going to collapse from under me.

The trembling and this general weakness that exists within my lower limbs is not a new symptom.  So, you would think that I would be used to it by now.  But when confronted by worsening symptoms; they feel anything but familiar.  With worsening symptoms, we are once again thrust back into working through the cycle of grief.

"But when confronted by worsening symptoms; they feel anything but familiar.  With worsening symptoms, we are once again thrust back into working through the cycle of grief." Share on X
Directions of Grief
Five Stages of Grief – Denial, Anger, Bargaining, Depression and Acceptance via Shutterstock

Denial. Anger. Bargaining. Depression.  These are the key elements that we battle through alongside the fight we face with our symptoms before reaching acceptance.

"We need to battle through denial, anger, bargaining, and depression before reaching acceptance." Share on X

Accepting a ‘New Normal’

But, before we can arrive at acceptance, we must first deal with the psychological fallout that worsening symptoms create. Since the trembling has worsened, it has also significantly affected my mobility. Standing and walking is problematic as the shaking feels incredibly violent. Anxious that at any moment, I will collapse to the ground.  As a result, I have lost confidence, particularly when out of the house, the fear of having a fall never far from my mind.

It feels that I am drowning.  As though my days are about surviving rather than living. Every day I am tormented by symptoms beyond my control.

"My days are about surviving rather than living…tormented by symptoms beyond my control." Share on X

Symptoms are so severe that I am no longer able to function within the world around me.  People assure me of my bravery and resilience in the face of illness.  However, it’s during such flares that words such as bravery and resilience cease to have any meaning to me.

The Unpredictability and Isolation of a Chronic Life

Ask anyone living with a chronic illness, and they will tell you how unpredictable life can be.  Unpredictability is the very hallmark when living with a chronic condition.  Every day we wake up never knowing how the symptoms are going to impact the new day that awaits us.  When symptoms worsen, we never know whether it is due to deterioration in our condition, or just due to a flare.  And when symptoms do become worse, the fear that it is due to a decline becomes very real.  We already had to come to terms with a diagnosis and the new normal that comes with it.  And with worsening symptoms, we again need to adapt and find another new normal.

"When symptoms worsen, the fear that it is a decline with our health condition becomes very real." Share on X

The Effects the Physical Has On Our Mental Health

Furthermore, when symptoms do worsen, we can often isolate ourselves.  The isolation may be as a result of the symptoms themselves, or because of the emotional consequences, it has on our mental health.  I have recently had experiences of isolation.  Due to the severity of this recent trembling, it has affected every facet of my life, most notably my mobility. As a result, I have been unable and afraid to go out much, and when I do, I tend to go to familiar places; places where I know where I can quickly sit down if I feel they are going to collapse.

When living with such symptoms, especially when they are invisible, itself also causes isolation.  We often hide behind a mask; suppressing our pain and fatigue behind a smile.  The pain, fatigue, trembling, and dizziness does not manifest themselves physically.  No one can see or understand the torment that our bodies withstand.  And that can be incredibly lonely.

"No one can see or understand the torment that our bodies withstand. That can be incredibly lonely." Share on X

By not being truthful about the reality of our current situation, we begin to isolate ourselves further. Recently, I have become quite withdrawn, choosing to turn inward, becoming lost in a descending fog of hopelessness and despair.  Stress and feelings of sadness is a consequence of the physical toll that living with illness has on our bodies and minds.  Stress, however, can also exacerbate the symptoms, potentially causing a flare or making one much worse.

"By not being truthful about the true nature of our health we are further isolating ourselves." Share on X

Arriving at Acceptance

Reaching acceptance, although the journey is long and arduous, makes coping with chronic illness more manageable, arriving at acceptance, however, is difficult.

For many, it means resignation or giving up.

Acceptance instead is more about learning effective ways of coping with this new reality and quietening negative thoughts and feelings.

Acceptance and having a positive attitude isn’t a cure for chronic illness, but they can help make it easier to overcome the challenges and limitations that we may encounter.

"Acceptance and having a positive attitude isn't a cure for illness, but they can help make it easier to overcome the challenges and limitations that we may encounter." Share on X

One thing I have learned along the way, however, is that achieving acceptance is difficult.  When we think we’ve accepted everything about our illnesses, something happens such as worsening symptoms, and once again, we find ourselves back to the start.  Much like a revolving door, we often travel round and round the different stages until we locate the exit and reach acceptance.

Perhaps, when living with a chronic illness, there is no such thing as ‘complete’ acceptance.  If recent experience has taught me, coming to terms with a chronic illness involves a continuous journey between denial and acceptance, and so many other emotions.

"Coming to terms with chronic illness involves a continuous journey between denial and acceptance." Share on X
arriving at harbour after storm
Reaching acceptance can feel like arriving at a safe harbour after a storm

And as I now find myself amidst a torrential storm of pain and trembling, and days spent trying to survive the impending floods.

But, I hope soon that I once again find a safe harbour that is acceptance.

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Behind Closed Doors: Life With A Neurological Condition
In Chronic Illness

Behind Closed Doors: Life With A Neurological Condition

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In The Darkness & Behind Closed Doors

Life with a neurological condition is spent in the darkness.

We live with the symptoms behind closed doors.

Behind closed doors where no one can tell how much pain we are in, or the suffering caused by the many other symptoms that comprise our everyday life with chronic illness.  Our days are spent behind closed doors living with these symptoms.  When we do go out, we do so behind a mask.  A mask that consists of make-up to conceal the effects of living with illness every day.  Effects such as dark circles under the eyes and a general pale complexion that make us look ill.

We live with chronic illness in the darkness. We live with the symptoms behind closed doors. Share on X

But we don’t want to look ill; it’s more than enough to feel so every day as it is.  And so, we don our mask to conceal our ‘sick’ identity.  However, the masks we wear only often leads to suspicion from others who know us.  They are unable to fathom how we can still look ‘good’ and yet claim to be chronically ill.  Many believe we must be exaggerating our symptoms to gain sympathy and attention.

But we don't want to look ill; it's more than enough to feel so every day as it is.  And so, we don our mask to conceal our 'sick' identity. Share on X
woman holding hands over eyes
Often neurological conditions come with pain; pain that is can be constant and unrelenting

But they can’t see.  Nobody can see the destruction that living with constant and relentless symptoms has on our bodies and our ability to function in the world around us.

Life With A Neurological Condition: Pain Often A Constant Presence

This week, in particular, has been hard; the pain has been my alarm clock.  Today, for instance, I woke just before six o’clock, sleep interrupted by a wave of crippling pain in my legs.  Pain that feels like legs trapped in a vice that refuses to loosen. Pain has not only been disrupting my sleep but has also been keeping me up late into the night.  Nights where the pain has been my only companion.

But Pain Is Not Always The Source of Frustration and Despair

As a result of my diagnosis, it is not only pain that torments my legs.  I also endure stiffness and weakness in both of them.  As a result, it takes a considerable amount of energy to get out of bed.  Once I do; however, my legs give way, and I end up in a crumpled heap on my bedroom floor. Unable to do anything else, I manage to haul myself up back into bed.  In bed, I burrow beneath the warm duvet, which provides comfort and security from the cold, which only seems to aggravate the already horrendous pain. Incapable of doing anything else, I catch-up with the world I am currently unable to be a part of via social media, or watch funny videos on YouTube to in a bid to distract me from the pain and trembling that is ravaging my legs.

laptop in bed in the dark
The internet, social media such as YouTube can be a great distraction day or night when symptoms are at their worst

Eventually, usually after a couple of hours of resting, I can get out of bed and continue with my day.  Often, more often than I’d like to admit, I go without breakfast, my stomach protesting at the very thought of food due to nausea.  On days, I can manage to eat, I grab a breakfast bar, something quick and easy and requires no preparation.

Life With A Neurological Condition: The Invisibility

By looking at me you would not believe that anything was wrong with me, however, for me, it feels as though my legs are working overtime to be able to do everything that others take for granted. Taking a shower, getting dressed, doing household chores and preparing meals is extraordinarily challenging. The continual trembling of my legs, it can feel as if they are no longer strong enough to be able to support my body.

There are not enough words to adequately describe the weakness and fatigue I experience when continuously living with pain and trembling.  Everything is a struggle, and as such, forced to take breaks in between having a shower and getting dressed.  Or between chores that need doing around the house.  Just standing is problematic for me because of the continual trembling, feeling as if I’m attempting to balance on jelly. On the worst days, being able to achieve anything at all is exceptionally challenging.

With a body that can do very little, my day consists of resting on the sofa or my bed in my sanctum watching one of my many TV boxsets or an uplifting film on Netflix.

With a body that can do very little, my day consists of watching one of my many TV boxsets. Share on X

The scenario above is a small snapshot of a typical day.

Life With A Neurological Conditions: Days are Unpredictable

However, as anyone living with a neurological condition can attest, there is nothing typical about our days.

Our days are unpredictable; no two days are exactly alike…Things can change instantly. Share on X

Our days are unpredictable; no two days are exactly alike.  Even minute by minute, things can change instantly.  I can feel fine one minute, and suddenly I am lying on the floor after my legs unexpectedly give way.  Or a sudden bout of vertigo overwhelms everything, knocking me off balance. I found a quote from an old blog post, that resonated with me.  It reads “Life with a chronic illness can change instantly within a blink of an eye, one minute the symptoms are in the background, calm and peaceful…and the next they are wreaking havoc upon your body and impacting your life and routines.”

quote from blog crashing violent waves background

The Unknown Of Life With A Neurological Condition

The quote sufficiently describes life with a neurological condition.  Plans for going out or accepting invitations to weddings or other social gatherings are problematic to accept.  Why?  Because we are unable to check our diaries, unable to discern how we are going to feel on a particular day. Never knowing the state in which our bodies are going to be on a specific day.

One minute the symptoms are in the background calm and peaceful…the next they are wreaking havoc. Share on X

We are in a constant state of being stuck in the ‘unknown.’

The road ahead of us contains only a giant question mark.  Not knowing what lies ahead of us tomorrow, next week, next year or even further ahead in regards to our health.

Being chronically ill we are in a constant state of being stuck in the 'unknown'. Share on X

But unlike most people, we in the land of the sick learn to love every second, every minute, and every hour, of any of those good days because we know that the bad seconds, minutes, hours or days may be just around the corner.

As unpredictable as life with a neurological condition may be, however, our lives are still an adventure with infinite possibilities waiting for us to explore.

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