Tag

functional neurological disorder

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

Behind Closed Doors: Life With A Neurological Condition

1 Comment

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.

by
Keep Reading
In Chronic Illness

How To Self-Care While On A ‘Deserted Island’

4 Comments

WHAT IS SELF-CARE?

Self-care refers to the actions and attitudes which contribute to the maintenance of well-being and health of the individual.

[Tweet “Self-care is the actions that contribute to the maintenance of health and well-being.”]

When living with a chronic illness, this includes taking prescribed medications, regularly exercising, eating healthily and attending appointments with your doctor.

As equally important is to maintain positive emotional health and well-being.  For me, what has helped cultivate a positive attitude is the development of a positivity board.

This positivity board consists of positive and inspiring quotes and favourite photographs.  And anything else which helps me remain positive and content despite the effects that living with a neurological disorder has on my life.  I have also made myself a comfort box.  A box containing items that bring me comfort and support when symptoms are remarkably severe.  By keeping this box next to my bed provides me the opportunity to self-care when I am unable to get out of bed.

How to Self-Care When Travelling With a Chronic Illness

However, how can we still participate in self-care when stuck on a deserted island.  I don’t mean a literal deserted island, but rather how can we take care of ourselves when away from our daily routines and everything else that provides comfort and safety while living with a chronic illness.

One such example is travelling.

Travelling when living with a chronic illness presents its own set of challenges regarding self-care. Being away from our usual routine and everyday life is difficult.

It’s this change and not knowing what to expect that can make it difficult when travelling with a chronic illness. It’s this change and not knowing what to expect which makes it’s difficult to anticipate, plan and manage our symptoms.  In my experience after four cruises, self-care can often be more difficult when on this type of holiday as when we begin to feel unwell we cannot just pop to the nearest store for the items which can help ease whichever symptoms decide to grace us with their presence. Which means, careful and considered packing before we leave on our adventures.

[Tweet “Travelling with a chronic illness presents its own set of challenges regarding self-care.”]

Go On An Adventure

So, how can we practice self-care while we are away?  How can we ensure that we enjoy our relaxing time away and not let our symptoms get in the way of having a good time?

BEFORE LEAVING

The first piece I would give to anyone wanting to travel while living with a chronic illness is to accept yourself for who you are today.  Recognise and accept the limitations that now exist, and assess your particular needs. Once you know them, then you can start planning around your new roadblocks to find a location and type of holiday that is best suited to your particular needs. For example, if you are planning a city break and you have difficulties with mobility then perhaps find a hotel located near the sights that you want to visit during your stay.

[Tweet “Knowing your limitations and needs make it easy to plan and find the holiday best suited to you.”]

I recently read an excellent article about travelling with a chronic illness. It recommended that before starting to pack is to keep a log of your daily activities to better prepare for your needs while away.  Note things like medications, equipment, and anything else that you might need to help look after yourself while away and especially if and when a flare in your symptoms occurs.  It might also be an idea to start packing a few weeks before your departure; this year, I admit I left some things until the last minute, and the packing left me feeling weak and fatigued.

[Tweet “To prepare for your self-care needs, keep a log of your daily activities before leaving. “]

And find the space to pack your essential self-care items such as books and magazines, a favourite pillow or cushion that you find comfortable if pain is an issue for example.  When I am in a lot of pain, I often find distraction the best way to cope, taking my mind away from the source of my discomfort with something such as a funny and heart-warming film.  As such, I always ensure that I pack my iPad loaded with my current favourite films and TV shows (with headphones as not to disturb my travel companions; useful when pain wakes you up in the middle of the night).  It can also be helpful on days confined to bed because of a sudden flare in the severity of the symptoms to entertain one’s self when everyone else is out enjoying their time in a new country.

smartphone entertainment and travelling

Hydration is also essential, even those not living with a chronic illness. Make sure to carry a water bottle and snacks in your carry-on luggage in case of delays in the airport.  Dehydration and exposure to the sun both can exacerbate fatigue. To avoid this, drink plenty and limit your time in the sun.

Meditation is also very useful in helping ease the burden of symptoms when they are a nuisance.  There are plenty of apps available for smartphones or tablets that focus on meditation and mindfulness.  The exercises can be done anywhere – even busy airports and they are excellent at settling the mind and reduce stress.  If you find travel difficult and stressful, then perhaps investing in an app like this might be beneficial.

[Tweet “Meditation apps are beneficial for settling the mind and reducing stress – and can be done anywhere!”]

DURING THE HOLIDAY

When sampling a new country, we want to do and see everything it has to offer.  We want to push through symptoms like pain, so we don’t miss out on anything.  But by doing so may not be the smartest move as it may exacerbate then even more.  So take a break.  Perhaps limit your activity to only doing one fun thing a day, giving you the opportunity to rest for the remainder of the day.

[Tweet “Pushing through symptoms so we don’t miss out is not smart and may exacerbate them further.”]

If planning energy-consuming activities alternate your days.  For example, have an active day followed by a day of rest.  Doing this will allow your body time to recover and eliminate the stress and disappointment of potentially missing activities.

[Tweet “To eliminate disappointment of missing out alternate your days between active days and rest days.”]

Travel is good for the soul

And this doesn’t have to mean lying in your room while everyone else is having fun.  Book a spa day as an alternative.  Or treat yourself to a day next to the pool with a good book.

During my recent time away, I experienced a day filled with excruciating pain.  Instead of wallowing in self-pity and misery I phoned my best friend as a distraction from the pain.  I found this useful and made my day brighter.  Perhaps you can think about having your person standby in case you need them.

But perhaps the most beneficial part of self-care for anyone is sleep! So try and get a good night’s sleep and nap whenever you feel like you need it. Sleep is perhaps the best form of self-care there is.

[Tweet “Sleep is the best form of self-care there is!”]

COMING HOME

In my experience, travelling can be extremely taxing.  Take a few free days to allow yourself to settle back into your routine and allow your body to recover. Spend the time to pamper yourself and catch up on your favourite TV programmes. Or reminisce while flicking through your photographs from your incredible trip.

Oh, and plenty of sleep, trust me your body will thank you for it!

[Tweet “Allow some free days after returning from your travels to allow your body to recover.”]

And most of all – congratulate yourself! You made it outside of your safe comfort zone. Not allowing the baggage that you carry because of chronic illness from stopping you from seeing the world.  And no letting chronic illness rob you of the excitement and enjoyment that travel offers!

by
Keep Reading
I Still Want Adventure In The Great Wide Somewhere
In Chronic Illness

I (Still) Want Adventure In The Great Wide Somewhere

11 Comments

As Illness Becomes Permanent the Person We Once Were Fades Into Oblivion

Anyone living with a chronic illness is all too aware of the constant impact that comes from the day to day persistence of symptoms such as chronic pain, and fatigue can have, as we watch the person we once were fade into oblivion. Symptoms that first started as mild, seemingly benign, suddenly become invariable. Their presence, not a result of a brief illness but a permanent and life-changing condition. Over time, these symptoms take over our body and mind. The purest pleasures that we once so enjoyed suddenly becomes unattainable. Once something like going on holiday was pleasurable and now invoked anxieties when travelling.

Perhaps it was different for me. The neurological condition that I eventually diagnosed with is as a result of a problem that arose during my birth. As such has left its permanent scar on my life since. Although the symptoms were at first insignificant have become progressively worse since.  As such, I have never been an adventurous or outdoor person. Sports, for example, has never been my thing, proving myself to be more of a clumsy and uncoordinated person. Growing up, and struggling to fit in with others, I was quite happy to stay at home, tucked away in my bedroom to read or watch a favourite film.

Preferring the Safety of the Familiar

Even when I ventured on my own to attend university away from home, I eventually returned after several weeks. I found myself unable to cope away from the comfort and safety of familiar surroundings while navigating mysterious and unexplainable symptoms. Although never a strong passion of mine, I always enjoyed travelling. Whether it be visiting other parts of the UK or soaking up different cultures abroad.

However, as time passed, these symptoms grew in intensity. The culmination of which was preventing me from living life. Anxiety, pain, fatigue, and vertigo were taking over my every day, slowing becoming my new normal.  Endless trips to see consultants and specialists proved fruitless.  Until the diagnosis of a neurological disorder. A burden that I must now carry with me wherever I go.

Were my days of travelling finished?

When the symptoms began to deteriorate, I thought the days of travelling was over.  Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent.  My world had become limited, whereas the symptoms became more pronounced and took a more significant part of my life.

"Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent. " Share on X
quote life begins at the end of your comfort zone

Life Begins at the End of Our Comfort Zones

But there came a time when I wanted to see more of the world.  Thanks to funding from our local authority, I was able to employ a carer to take me out for a few hours a week. As I  began to visit new places and learned to push through the effects of such debilitating symptoms, my confidence increased. It was only then I  decided to go on holiday for the first time in I can’t remember how long.  Due to the severity of the dizziness, vertigo and perceptual difficulties that come along with them, we decided to try a cruise to avoid the long waiting in an airport terminal.

Lessons Learned From Cruising

Last month, I returned from my fourth cruise.  And ever since, I’ve come to reflect on my experiences of travelling while living with a long-term health condition.  Before the trip, I had been experiencing increasing neuropathic pain in the legs. The excruciating pain often had me sobbing with the intensity of the torment it inflicts. Pain so severe it even made me physically sick as a result. It, unfortunately, continued throughout the cruise. The pain forced me to submit to the painkillers, prescribed to me in case of such debilitating pain. It, however, only added to nausea I was already experiencing due to the motion of the ship.

Where we are is irrelevant; pain is pain. It will be there no matter where we are

But it made me realise, that location is irrelevant.

Pain is pain.

Symptoms are symptoms.

"Where we are is irrelevant. Pain is pain. Symptoms are symptoms. They will be there no matter where we are." Share on X

They are going to occur no matter where we are. Being crippled, writhing in pain, crouched over the toilet at home is no different from being debilitated by pain in the cabin of a cruise ship.  Yes, it’s easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when on the move.  It just requires careful planning, packing essential items that will help manage symptoms when they do occur.

"Yes, it's easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when travelling. It just requires careful planning." Share on X

As this realisation became reaffirmed after each trip I took, it became easier to depart on further cruises.  As flares occurred before a trip, however, inevitable doubts crept in. Doubts which questioned whether I could cope with travel while enduring such severe symptoms. But as the holiday was already fully paid for, as Queen once sang “The Show Must Go On.”

Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed.

"Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed." Share on X

For the Love of Cruising

I know that places with high ceilings trigger severe episodes of vertigo, hence why cruising has become so appealing.  The trembling of my legs and the lack of warning before they give way means that I am unable to walk far. As such I have particularly enjoyed the Norwegian Fjords as many of these ports are within the towns themselves and they tend to be easy to navigate by yourself.  Also, cruise companies offer some lovely excursions and all itineraries details the total length of the tour and how much activity (like walking) there is so that you can choose one best suited to you and your particular needs.

"For successful travel, we need to evaluate our limits and adapt our plans accordingly." Share on X

As chronic pain is a constant companion of mine, before our cruise, we’d booked a trip to the incredible Blue Lagoon in Iceland. The warm mineral water helps melt away pain and stiffness.  And it worked!  The whole time we were in the beautiful blue water, my pain levels markedly decreased.  We booked a couple of other trips in several of the other ports on the itinerary. All under four hours and had minimal walking involved but still allowed me to appreciate the fantastic sights that Norway and Iceland offers.

The luscious and relaxing water of the Blue Lagoon in Reykjavik, Iceland

The Anxiety of Being Outside Our Comfort Zone

Before a trip, of course, the monster that is anxiety rears its ugly head. I begin to question whether I am strong enough to cope with constant and debilitating symptoms while travelling.  However, I have survived and at times even thrived even while away from the safe and familiar. Although there were difficult times, I got through them.  I even became stronger and resilient as a result.  I since, have been able to reassure myself with the mantra “You can do this.  You’ve been through worse, and got through things you thought you couldn’t but did.”

"Despite the difficult times, travelling has helped me become stronger and more resilient." Share on X

You become resilient when the intense swelling of the sea, constantly upsets your sense of balance, making it difficult to walk. And you become resilient when crippled with severe pain that feels as if it will never end.  You’re resilient for enduring continuous and unrelenting symptoms and still getting up and enjoying all a holiday has to offer.

The Great Unpredictability of Illness is Much Like The Great Unpredictability of the Weather

This year, reminded me of the great unpredictability of the weather. Unfortunately, high winds prevented the ship from docking in two of the ports scheduled on our trip.

It told me that like the weather the symptoms of chronic illness is also unpredictable.  But as it reminded me, unpredictability doesn’t have to ruin fun or enjoyment of plans; it just means finding ways around the restrictions like the weather or our symptoms.

As much as travelling can be stressful, and that anxiety will be a part of future travel plans, I pledge not to let that stop me. I believe that travel is something that has me happier, stronger and more resilient.  Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere.

"Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere." Share on X
belle quote beauty and the beast adventure in the great wide somewhere
A post about why I crave travel and adventure despite living with constant and often debilitating symptoms of a neurological disorder
  • i still want adventure in the great wide somewhere cover
by
Keep Reading
what if our imperfections are just gold-filled cracks?
In Chronic Illness

What if our imperfections are just gold-filled cracks?

5 Comments

A few weeks ago I was contacted by a friend about an exciting community project in Cornwall entitled ‘We Are Enough; The Creative Yarn Bomb of Love.’  Its ethos is to raise awareness about mental health; to bring people together to share experiences and encourage self-expression through creativity.  All forms of creativity are encouraged such as knitting, crocheting, writing, painting or photography while also spreading positivity and kindness.  A project to help people who may lack self-worth to know that we are all good enough just as we are.

The project will culminate in May 2019 to coincide with World Mental Health Day with a massive yarn bombing, whereby spaces across Cornwall, its structures and objects will be transformed, covered with decorative knitted and crocheted material to promote and raise awareness about mental health. You can click here to find out more about the We Are Enough project.

My friend asked if I somehow wanted to get involved in the We Are Enough and I, of course, said yes.  It is a brilliant project, and I know so many people who have had experience of not feeling good enough and plagued with self-doubt and suffering low self-esteem as a result.  Due to poor manual dexterity due to the Functional Neurological Disorder I suffer from, I am unable to crochet and knit, so I thought instead I would put pen to paper (or fingers to keyboard) and share my own experiences of not feeling good enough…

I suppose I have had the feeling of not being good enough for a long time now; for far too long that I am no longer able to remember exactly when these negative self-beliefs began.

These beliefs became more evident when the symptoms become a more significant part of my life, mainly the dizziness and the problems they caused with being able to handle being in certain places such as buildings with high ceilings, for example.  I hated these symptoms and the limitations they placed in my life, being able to enjoy an outing to the cinema became increasingly difficult due to the severity of the dizziness and vertigo.  I didn’t hate these symptoms (and later the neurological condition) just because of the limitations, but also how these set me apart from everyone else.

[Tweet “I not only hate the limitations, but also how the symptoms set me apart from everyone else.”]

Being different and standing out from everyone else can be very lonely and isolating
Standing out from everyone else can be incredibly lonely and isolating…very often leading to feeling not good enough

These symptoms began in early childhood and stayed with me throughout my adolescence and beyond.  A time when any differences that set us apart from everyone else are more apparent, especially to those within our peer groups.  And unfortunately, these differences can lead to bullying and ostracisation, which is what I frequently experienced throughout my school years, especially during secondary school.

In my experience, it is one thing to think negative and demeaning judgments about yourself, but to hear them from other people only reinforces these beliefs and are once again enforced on this perceptual cycle of not feeling good enough. And every time we are ignored or not given an invitation on the latest night out, or party once again reinforces to ourselves that we are not good enough.  And as this perceptual cycle repeats, again and again, it is no longer a belief, but becomes our truth.

[Tweet “Continuously hearing negative judgements about yourself enforces the belief we are not good enough.”]

We can feel defined by our imperfections, whether they may be physical imperfections such as scars, or a perceived character flaw or like me, suffering from a medical condition that makes you different.  So much so, that we are unable to recognise the positive attributes that make us stand out, and unique to those who love us unconditionally.  In the past, I’ve gone on numerous courses, many of which worked on increasing self-confidence and self-esteem and part of this was to write a list of what we liked about ourselves.  Asking other people who are close to me, they could list many things that they liked about me. However, I struggled to come with one single item on the blank piece of paper.

Even now at age 32, those feelings of not being good enough has followed me through those turbulent years of adolescence and into adulthood.  At university, much like my school days, I lacked confidence, continually doubting my abilities, never satisfied that my latest essay was ever good enough, or convincing myself that I failed the exam I just came out of, although I never had any evidence to support these assumptions.

In today’s society, we are taught the value of being productive, and as such as someone living with a long-term neurological condition and unable to work once again reinforces this belief that I am not good enough, somehow unworthy of having beautiful things or the opportunity of good things happening to me.

I am imperfect, and the condition that is now a constant part of my daily life is somehow my most significant imperfection.   An imperfection that has caused significant cracks, and weakening every part of my life.  But, have you heard of the term Kintsugi?  Well, kintsugi is the Japanese art of repairing broken pottery.  Broken objects, such as pottery are often repaired with gold.  These imperfections or flaws are seen as a unique piece of the object’s history and which adds to its beauty.

kitsungi an art form that turns brokeness into beauty
The Japanese art form known as kintsugi turns brokenness into beauty

Beautiful isn’t it?  But why do we not see imperfections and flaws ourselves in the same way – as something as unique and adds to our beauty instead of something to be ashamed of, doing our best to hide them from others.  To see something that sets us apart as something to celebrate and be proud.  Yes, the symptoms of the neurological condition that I live with may make doing some activities such as going to the cinema as difficult but isn’t it the fact that I have refused to let it stop me from doing certain things that is a sign of my strength and what should be celebrated?

[Tweet “Perfection is a social construct and not a reality; no one is perfect.”]

The fact is that perfection is a social construct and not a reality; no one is perfect. We all have flaws and imperfections whether they may be real or imagined, but what does matter is what we believe about them.  We can tend to give these flaws with more power and importance than they warrant, believing that our imperfections somehow makes us less whole.  Less worthy. But in truth, we are all good enough just as we are.  And our flaws and imperfections are gold-filled cracks that make us unique and adds to our beauty, and not which diminishes our light within.

[Tweet “We believe that our imperfections somehow makes us less whole. Less worthy.”]

Remember, you are good enough just as you are.

To find out how you can get involved in the We Are Enough project from your own home too, go to QuietConnections.co.uk/We-Are-Enough/

[Tweet “In truth, we are all good enough just as we are.”]

by
Keep Reading
In Chronic Illness

A Month of Life & Chronic Illness

No Comments

After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’

The prompts for this month are:

  • Adapting
  • Practicing
  • Realising
  • Celebrating
  • Inviting

Here we go…

After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms.  But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.

I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you.  But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition.  Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.

pexels-photo-461775
Acceptance is a journey and not the destination.

In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years.  Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms.  I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.

In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy.  The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.

Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life.  It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.

pexels-photo-226718
The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain.  Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances.  When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition.  But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.

Photo 07-02-2018, 03 14 19

And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings.  But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!).  It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.

It is little victories like the theatre trip which I am celebrating this month.  It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives.  Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration.  I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.

pexels-photo-341858
Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

To end, I think I would like to invite more opportunity into my life.  Perhaps, by expanding my writing beyond the blog.  Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know!  Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle.  Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know.  But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.

by
Keep Reading
Pin It