reflections Archives

In Chronic Illness

Looking Back To Move Forward

January 10, 2019 3 Comments

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

Dedicating

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

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

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

A New Year, a New You?

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

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

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

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

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

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

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

I am dedicating this year to positivity!

Establishing

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

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

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

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

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

Breaking

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

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

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

Pain and the other symptoms that we have to deal with every day gives us enough to cope with already without adding guilt into the mix. Share on X

Dealing with guilt on top of the all the other symptoms we have to continuously contend with uses up energy we simply do not have.

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

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

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

Strengthening

Strengthening: Verb. To make stronger; give strength to

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

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

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

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

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

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

Allowing

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

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

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

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

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

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

What are your plans for 2019?

January Link-Up Party with A Chronic Life

In Chronic Illness

Reflection on a life with illness…

April 21, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Reflection…This is a day to reflect. For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted. Reflect on your journey to this day, what are your thoughts and hopes for the future

I am writing this post whilst lying in bed. It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed. It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.

I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after. That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after. I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world. Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness. But that was the hand that I was dealt.

I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet. Instead, I dreamt of going to university in order to establish a career for myself. I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.

However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse. As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms. It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with. That and long waiting lists to see consultants and for tests to be conducted.

Now, I have a definitive diagnosis. It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work. Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life. Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others. I am involved with a new community for those affected by neurological conditions called Neuro Nula and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.

On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child. The journey towards those dreams may look different and may also take longer but they are still achievable. This is summed up brilliantly by a quote that I came across on Twitter:

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In Chronic Illness

My second year blogiversary and looking to the past…

January 8, 2014 No Comments

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Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘. After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog. Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions. However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.

Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.

However, there are also a number of changes that are not so good. In looking over past blog posts, it made me realise how bad my condition has become. I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries. It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.

The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘. At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected. Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.

However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future. I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment. For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…

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Who knows what the next two years will bring?…