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To My Pain (A Letter To Chronic Pain)
In Chronic Illness

To My Pain

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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.  For April, and because for several weeks I have been experiencing a severe pain flare, I would use the prompts to write a letter to my pain.

To My Pain

Yes, I have addressed this letter to you, ‘my’ pain and not just pain. I know pain is felt by many. Perhaps if you were benign, harmless and temporary, I would have only addressed it to pain. But you’re not, you’re persistent and chronic, becoming a significant and permanent part in my life. You have become another part of me, so I think I can refer to you as ‘my pain.’ The pain I feel, the pain you make me feel, is personal to me; something that is felt by only me, remaining invisible and unknown to everyone else.

"Pain is deeply personal to the individual.  We do not feel the same pains. It remains invisible and unknown to everyone around us." Share on X

Living with constant and debilitating pain is tiring…well more like exhausting!

What’s it like to live with you, you ask? Well, it’s tiring. Wait, it can be so much more than tiring. It’s exhausting. For weeks now, the excruciating and debilitating as it’s worst, there have been no breaks, no respite from the torment you have been inflicting on me and my life.

"Living with chronic pain is always tiring; exhausting even. Pain allows for no breaks, no respite from its torment." Share on X

You, which has become a sharp, electric shock type of sensation throughout my spine and legs, and one which has prevented me from getting to sleep, or on other occasions waking me from sleep. Getting a decent amount of sleep has therefore been hard to come by. And it has only made these last few weeks even more tiring as a result.

The impact that you have on those you blight spreads far and wide. The heightened levels of pain you have caused me has also added anxiety in my life. At times, I have become so overwhelmed and incapacitated by you that I can find myself unable to function. Physically, it can cause my legs to buckle before giving on me unexpectedly, giving me little time to react. You can also cause brain fog; causing me to remember important information or losing words I am searching for amongst a cloud of thick fog. The added stress and anxiety has become tiring, this constant worry about when this sudden loss of being able to function will occur, even the fear of going out in case of such an attack.

curled up in a foetal position because of pain

It’s tiring having to deal with setbacks that you create; the impediments created by your overwhelming urge to show your continued dominance, causing yet another dreaded flare. The continued knocks to our self-confidence as we once again begin to question our abilities and what we are capable of on any given day.

"It's tiring having to deal with setbacks from chronic pain; the impediments created by its overwhelming urge to show its continued dominance, causing yet another dreaded flare." Share on X

Through difficult times comes the opportunity for educating

Through the exhaustion and tiredness that you create, however, is also the opportunity for educating ourselves about you and what methods we can implement to calm and lessen the effect that you have on my life.

It reminds me of the quote ‘A smooth sea never made a skilled sailor.’ Meaning that through the tough times that you cause, we can learn more about what helps and what doesn’t to come up with a more effective pain management plan for the future.

Time and time again I’m reminded that pain is uncontrollable. You like nothing more than to show your power and dominance, and where there is nothing I can do to quieten your reign of terror. To try and control you, would prove to be futile, and waste precious energy I don’t possess. The only thing I can do therefore is to learn ways to manage your existence.

"Time and time again I am reminded that chronic pain is uncontrollable. Liking to show it's power and dominance. We can only learn ways to manage its existence." Share on X

I have been educating myself on alternative methods to manage you and your unwelcome presence. I have been mainly looking into CBD oil and the positive effects it can have on you, on pain. And I have been learning that there is certainly a lot to educate me about concerning CBD oil!

At the receiving end of your wrath…

Until I take action however, I continue to be at the receiving end of your anger and wrath. Especially at night, when there are no distractions to be found to help ease the burden of pain. I’m forced to receive your attempts to enforce insomnia, as well as the debilitating pain.

And unfortunately sleep does not come, and when I awaken, I observe incredibly dark circles under my eyes. My reflection was expressing the lack of sleep that I received the night before. The need to rejoin the real world calls, I depend on concealer and blusher to disguise the physical effects that you bequeath.

"Living with chronic pain and it's invisibility we are often at the receiving end of judgements and suspicion; believing that we are faking being sick when in fact we are faking being well." Share on X

You are mostly invisible, but disguising the only physical evidence of your existence, I am at the receiving end of judgements and suspicion. When people cannot see something, they often deny its reality. In the case, of illness people assume that we must be fabricating our supposed illness; that because we look healthy than we must be so. What most people cannot comprehend that we are not faking being ill, but are instead faking being well.

I'm not faking being sick' I'm actually taking being well

As much as pain has taken it has also been giving…

I could write a long list of what chronic pain has taken from me, such as loss of independence as one example. However, pain has also been giving me little gifts that are important to remember and appreciate.

"As much as chronic pain has taken from me, it has also given me many gifts and taught me many valuable lessons." Share on X

Chronic pain has taught me some valuable lessons that make it easier to bare living with you every day. You have allowed me to learn things about myself that I may have never learned otherwise. Giving me the knowledge that I’m stronger than I ever thought; the training to be better prepared to face difficult situations as well as future flares. Pain has also given me patience. When experiencing a chronic pain flare, although exceptionally unpleasant, I know there will be an end. I need to wait it out, thus requiring patience.

"Pain has taught me patience. Something I've needed when experiencing a chronic pain flare; knowing there will be an end, I need to wait it out." Share on X

Quieting…

I am now calling on patience now as I wait on this current chronic pain flare to cease and subside. Oh, I know that you will inevitably return but right now I am waiting on you to quieting down the strength of the power you hold over my body. Waiting on the day to which your volume has quietened enough for me to be able to continue with my life without your constant influence.

Regards

Me, Rhiann.

To My Pain (A Letter To Chronic Pain)
April Link-Up Party with A Chronic Voice
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Finding Beauty in Life With A Chronic Illness
In Chronic Illness

Finding Beauty in Life With A Chronic Illness

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness.  Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. 

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

Adjusting

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

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

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

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

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

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

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

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

Hoping

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

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

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

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

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

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

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

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

Surviving

Surviving: Adjective. Continuing to exist; remaining intact

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

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

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

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

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

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

Befriending

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

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

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

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

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

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

abstract picture of love spelt out in block letters

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

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

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

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

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

Awakening

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

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

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

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

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

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

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

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

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

Looking Back To Move Forward

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness.  Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts.  I’ve decided to take part in this month’s Link Up Party. And to use the prompts to help me look toward the future with life with a neurological disorder.

Dedicating

Dedicating: Verb. To devote wholly and earnestly, as to some person or purpose

This year, I have made it my purpose to dedicate this year to becoming more positive.

Every year, emails start dropping in our inboxes promising a “new year, a new you.” They claim that with hard work, and dedication then we can become a new, improved and healthier version of ourselves. Sounds incredible, right?

A New Year, a New You?

When living with chronic illness and chronic pain, however, a ‘new year, a new you’ is merely a dream. With little to no chance of becoming a reality. Only a few days into 2019 and the crippling nerve pain that shoots throughout my legs has followed me into this year from the last. The promise of a fresh start, already obliterated.

When living with a chronic illness, a 'new year, a new you' is merely a dream with little to no chance of becoming a reality. Share on X

A ‘new year’ is an illusion as when living with pain and illness, as there is nothing new in our lives.

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A post shared by Rhiann Johns (@serenebutterfly) on

When living with chronic pain and other debilitating symptoms associated with chronic illness, it can be challenging to find joy and excitement for the new year. Particularly true when the only thing we have to look forward to is life with a chronic illness.

It can be challenging to find joy and excitement for the new year when the only thing we have to look forward to is the effects of chronic illness. Share on X

Following my year of resilience from last year, I am attempting to find the good in each day. And perhaps if I am unable to find the good, then maybe I need to create my own good things. Once again, I am dusting off my ‘joy jar’ in the determination to fill it up with some incredible memories from the year ahead.

The best is yet to come…

I am dedicating this year to positivity!

Establishing

Establishing: Verb. To install or settle in a position, place, business, etc

I was disappointed at the end of last year to find that I had failed to reach my target to read 40 books by the end of 2018.

Anyone who regularly reads the blog, or follows me on social media will know that I am a massive bookworm, and reading is one of my favourite past times. However, symptoms such as pain, and dizziness make it challenging to be able to do so. Other times I am too tired to read, and I fall asleep before my head hits the pillow.

Some of the amazing books I’ve read.

It is the first year, however, that I have been unable to reach my target on GoodReads. Because of this, therefore, it feels that much more of a failure. This year, I am going to establish a routine. To put aside some time for me each night, before going to bed, or time during the day when resting, to sit and read for an hour or even half an hour. Hopefully, by setting some time each day to read, even for just a short amount of time, I will reach my intended target with ease.

By establishing a regular routine and setting time aside each day to read it will help me reach my intended target with ease. Share on X

Breaking

Breaking: Verb. To put an end to; overcome; stop

Yes, I feel frustrated at myself and the symptoms that held me back from completing my GoodReads Challenge for last year. As a result, this year I am going to try and attempt to break from the guilt that emanates from the inability to complete tasks because of chronic illness.

I know that I must do better in accepting that this neurological disorder will forever accompany my life. I know I must ditch the guilt when I am unable to do something, or complete a task, or even I have to say no to something. After all, pain and the other symptoms that we have to deal with every day gives us enough to cope with already.

Pain and the other symptoms that we have to deal with every day gives us enough to cope with already without adding guilt into the mix. Share on X
Dealing with guilt on top of the all the other symptoms we have to continuously contend with uses up energy we simply do not have.

And guilt uses up energy; energy that is already scarce. Discarding the guilt, therefore, will allow that free energy for something else; something we can do.

Guilt uses up energy; energy that is already scarce. We need to break free from the guilt to allow us to use the energy for something else. Share on X

Last year, I also began the arduous task in breaking away from those relationships that were damaging my mental health. To defriend those on Facebook and break free from seeing pictures and statuses regarding events that I failed to be invited to, often not knowing about them until logging on to social media. It’s not because I don’t care about them, perhaps I do too much, and that’s why it hurts. It’s because they don’t care about me.

Strengthening

Strengthening: Verb. To make stronger; give strength to

If 2018 was a year of resilience, then I wish for 2019 to be a year of strength. I want to take steps to be physically and emotionally strong.

Recently, the pain and trembling in the legs have been particularly severe. The weakness is becoming problematic and leading to more episodes of them giving way. As a result, I need to find ways of strengthening the muscles in my legs.

It feels necessary as they continuously feel weak, yet it often seems impossible. The debilitating nerve pain and the constant fatigue just makes the mere idea of exercising daunting and unattainable.

I also need to strengthen my emotional resilience. To not allow the challenges and setbacks to knock the confidence that I have learned hard to regain.

Although I have determined to be more resilient during the last 365 days, does not mean that I am always successful at it. There have been times when circumstances have knocked me off course, leading to feelings of upset and frustration.

I must, therefore, learn to be stronger and not allow setbacks and challenges to enable me to fall into a depression.

Allowing

Allowing: Verb. To give permission to or for; permit

When I am alone, only greeted the sound of silence for company, it is easy to occupy myself with chores. To not allow me to enjoy the peace but to fill the silence and boredom with plenty of activity.

When living with a chronic illness, however, to do so often only leads to increased levels of pain and worsening fatigue. And is something that I am often guilty of, especially since the death of our dog nearly three years ago. I found it was easier to rest and be comforted by her affection when she was around. Now however, I struggle with the quiet and boredom of being alone and I tend to overdo things as a result.

This is the year that I am going to allow myself time to rest without guilt or blame.

This year, therefore, I am allowing myself to relinquish the need for activity and to be kept busy. To let me rest and let me be until the severity of the symptom subsides. To allow my body to recuperate until I am feeling physically better and stronger to be able to do chores.

It is the year for allowing myself to relax and enjoy the solitude by resting without giving in to the guilt.

What are your plans for 2019?

January Link-Up Party with A Chronic Life
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It's Beginning To Feel A Lot Like Christmas
In Chronic Illness

It’s Beginning To Feel A Lot Like Christmas

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness.  Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts.  I’ve decided to take part in this month’s Link Up Party, using the prompts to describe the run-up to Christmas from the viewpoint of someone living with a neurological condition. 

De-Stressing 

De-stressing: Verb.  To become or cause to become less stressed or anxious

The holiday season is among us.  A time for celebration, rejoicing spending time with loved ones, and giving and receiving with those who matter. 

However, the season, for many is also a time of stress and anxiety.   

The worry of finding the perfect present for our near and dear.  The growing list of tasks to prepare for the big day as well as the fatigue from this season’s various obligations.

Chronic illness presents numerous limitations that can challenge our ability to enjoy and participate in the season’s festivities.  It is therefore vital to find ways to de-stress to help us survive and enjoy the most wonderful time of the year. 

Chronic Illness presents numerous limitations that can challenge our abilities to enjoy and participate in the season's festivities. 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. 

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In Chronic Illness

A Month of Life & Chronic Illness

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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.

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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.

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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.

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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.

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