Category

Chronic Illness

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

It’s Beginning To Feel A Lot Like Christmas

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
One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights

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

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

Simplifying 

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

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

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

Resting 

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

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

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

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

Finalising 

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

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

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

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

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

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

by
Keep Reading
In Chronic Illness

Exploring The World of Harry Potter

2 Comments

Becoming Spellbound by Magic

I think everyone has a favourite film or series of films from their childhood.  For me, these have always been the Harry Potter films.  Despite even being 15 when the first film came out.  

I fell instantly in love with the words, and how J.K Rowling transported you into an entirely different world.  I was already beginning to feel different from on account of my symptoms when the first film was released.  It was a time of loneliness and isolation as the so-called friends slowly ostracised me.  And my home became a place where I spent most of my spare time: the books and films of Harry Potter provided me with an escape, one in which I could inhabit a world of magic.  They were a welcome escape from the often frightening symptoms as well as the loneliness that plagued my life. 

I resonated with Harry’s struggles with loneliness and isolation as he lived at 4 Privet Drive.  But, it also gave me hope.  A hope that like Harry, I would eventually find a place of belonging.

Whether you come back by page or by the big screen, Hogwarts will always be there to welcome you home.

– J.K. Rowlin

As a Harry Potter fan, a visit to the Warner Bros. Studio Tour in London has been on my list of things to do for quite some time. 

Experiencing Hogwarts

Living with this neurological disorder affects my perception of the world.  For example, high ceilings worsen the dizziness I already experience.  Or can even trigger an episode of vertigo.  As such, it can be overwhelming anxiety-producing going to large places such as this, knowing it can provoke unpleasant symptoms.  However, I decided to defy the fear and anxiety and booked a trip to the Harry Potter Studio Tour.  I no longer wanted my symptoms to dictate my life and wanted to experience the magic of Hogwarts for myself.

So on a cold day in late October, we arrived at the magical destination and a mecca for all Harry Potter fans!  We headed to the entrance where there were large wizard chess pieces.  You may remember these from Harry Potter and the Philosopher’s Stone.  And then we were on our way in (after a swift security check!)

  • Wizard Chess Piece
  • Wizard Chess Piece 2
  • Wizard Chess Piece 3

There is an option to hire a digital guide. In other words, an audio guided tour of the exhibition.  It gives you an extra insight into the film-making process, as well as exciting trivia about these well-loved films.  In the end, I declined, fearing it would worsen the dizziness and vertigo. 

The Studio Tour

The Studio recommends that you arrive 20 minutes before the allocated time on the ticket.  This time, gives you the chance to peruse the public area.  This area contains a cafe, bathrooms, and an extensive shop of Harry Potter merchandise!  After a short look around, Mum and I descended on the Studio Doors and waited in line for the tour to begin…

Before the tour officially starts, a short film plays about the studio and the making of Harry Potter featuring some very familiar faces.  Then as the doors open, the Great Hall appears in front of us, welcoming us into the world of Hogwarts and Harry Potter. As we went the day before Halloween, there was a dark and spooky theme throughout the tour.  The Great Hall had pumpkins strewn up, for example and Death Eaters cropped up every now and then!

  • Hogwarts Great Hall from The Harry Potter Studio Tour
  • Great Hall at Hogwarts
  • Great Hall at Hogwarts 2
  • Dumbledore, McGonagall and Snape
  • Dumbledore and Hogwarts Professors

The Great Hall was the only part of the tour that the group was accompanied by a tour guide. As such it was when it felt the most crowded.  After a brief talk, we were left to explore the rest of the studio on our own.  There is still a set route to follow, however, but there is plenty of space, and everyone went off in different directions to see what was of most interest to them.

I found the Great Hall and the adjoining room where a lot of the sets, such as Dumbledore’s office and the Gryffindor Common room was overwhelming.  It was not only the crowds that was burdensome, but also the lights and all of the sets to see.  The dizziness and vertigo, at times, did become too much, but there are so many benches and places to sit during the tour it’s easy to relax and take a break when you need one. 

  • Gryffindor Common Room and Costumes
  • Gryffindor Common Room 2
  • The Burrow and the Weasleys
  • Death Eaters Meeting

I loved the Forbidden Forest, however, with the darkness and the sounds it was incredibly atmospheric.  The sounds of the forest’s various creatures and wolves howling, it felt you were walking through a real forest which made it an immersive experience. 

  • Entering the Forbidden Forest...
  • The Forbidden Forest
  • Aragog and other Spiders
  • Buckbeak
  • Werewolf

After coming out of the Forbidden Forest, you will find another gift shop, full of exclusive forest themed souvenirs.  Another gift shop can also be found when arriving at Station 9¾ where you can even buy some Chocolate Frogs like Harry and friends do on the Hogwarts Express!

Thoughts on The Tour

The studio tour is incredible, and the attention to detail is awe-inspiring and makes you appreciate the hard work and talent of all those who work behind the scenes of these magical and captivating films.  

  • Diagon Alley
  • Owls for Sale!
  • Joke Shop at Diagon Alley

The tour highlights the stunning costumes, enchanting sets and thousands of spectacular props set amongst two sound stages and a backlot.  All of what you see seem so familiar.  The tour includes everything you’d ever want to see from the Harry Potter films, which includes:

  • Hogwarts
  • Forbidden Forest
  • Hogwarts Express
  • 4 Privet Drive 
  • Hogwarts Bridge
  • Knight Bus 
  • Costumes 
  • And more!

After visiting the Backlot in which you will find the Knight Bus and 4 Privet Drive amongst others, you can find more about the special and visual effects.  They provide information on how they brought to life the magic to the big screen.  And also discussed the creative development of the magical creatures such as Buckbeak the Hippogriff and everybody’s favourite house elf, Dobby. 

No Magic Needed for Accessibility 

The accessibility of the Harry Potter Studio Tour was impressive.  On arrival to collect tickets, there is a lower window for those in wheelchairs, like myself.  There is also step-free access to the tour, which may not seem like much but is surprising how many popular attractions seem to forget such matters. 

And the majority of the tour itself was fully accessible.  The Great Hall and Diagon Alley was a challenge to navigate because of its slate floor and cobblestone street respectively.  The only sets that were not accessible because they had steps were the Knight Bus and the Hogwarts Bridge.  However, as they are both on the back lot, it is possible to take exterior photographs of them instead.

  • The Knight Bus
  • Harry's parents house

I was at first disappointed as I thought I would not be able to experience the thrill of being on the Hogwarts Express, but fortunately found that the last carriage on the iconic steam train is wheelchair accessible, and thus didn’t have to miss out! 

  • It's the Hogwarts Express
  • Hogwarts Express

I was most awestruck however by the incredible detailed model of Hogwarts, the last stop before leaving the tour.  It was incredible, able to walk around the entirety and see every little detail of the castle and its surroundings.  Definitely the highlight of the tour, in my opinion. 

  • The Hogwarts Castle
  • Hogwarts Castle 2
  • Hogwarts Castle 3
  • Hogwarts Castle 4

After we concluded the tour, we had time for a delicious bite to eat in the cafe located in the main foyer and a peruse of the shop.  We then sadly had to say goodbye to the tour and get back on the bus to head back to South Wales. 

I cannot recommend the Harry Potter Studio Tour highly enough, especially for those who are fans of the books, and films.  It’s the most brilliant way to spend three and a half hours.  The magic truly comes alive, casting its spell upon all that enters.  There, I forgot about my worries, and troubles that were plaguing my mind.  Unfortunately, the pain was severe and so not something I could forget, but during the hours I was there though I was not a girl with a neurological condition, but was just another Harry Potter fan. 

Are you a Harry Potter fan? Have you made a visit to the Harry Potter Studio Tour?  What was your favourite part? 

by
Keep Reading
In Chronic Illness

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

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).

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
by
Keep Reading
Through The Lens of a Flare
In Chronic Illness

Through The Lens Of A Flare

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, 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

by
Keep Reading
7 ways to cope during a flare
In Chronic Illness

7 Ways to Cope During A Flare

3 Comments

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…

by
Keep Reading
Pin It