new beginnings Archives

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 January 2020, I will use the prompts to discuss the promise of a new year and new beginnings from the perspective of being still sick.

As I sit here, only a couple of hours before the beginning of 2020; a brand new year, hell, even a brand I am reflecting on the concept of New Years and new beginnings.

Purging The Old, To Make Way With The New

Often, the celebration of New Years and the promise of such beginnings encourages a purge.

The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don’t need, or the negative thoughts or bad habits in our lives.

"The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don't need, or the negative thoughts or bad habits in our lives." Share on X

When living with chronic illness, we do so wish that we could purge this particular set of baggage. And why wouldn’t we? The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives. Illness controls how we feel to what the day ahead of us will resemble, and so much more besides.

"The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives." Share on X

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When I look back to my life during 2019, I am unable to find accomplishments or stand out moments. There are no moments that I am proud of, and if asked, I would be hard-pressed to find a highlight of the year. This year has had, unfortunately, a lot more downs than ups.

On reflection, this year has seen further deteriorations in the symptoms that accompany life with FND. The year has seen an increase in the number of falls and its ensuing bruises. And more incidents of being left embarrassed after my legs have given way which has left me lying in a heap on the fall.

So yes, if I could purge the afflictions created by FND and the effects of chronic pain, then I would do so in a heartbeat. To be able to wipe the slate clean, and start an entirely brand new book as we embark on a brand new year.

Seized By Fear Anxiety and Loss of Confidence Because of Chronic Illness

I wish I could grab the opportunities and excitement that presents itself at the beginning of this brand new year. However, recently life has been seized by fear, anxiety and loss of confidence. All are culminating from an increase in the severity of the symptoms due to FND. The loss of confidence has been quite profound during recent weeks and months, as the realisation of the unpredictability of my body has become more pronounced.

"Often when living with the effects of chronic illness and its debilitating symptoms, we can be seized by fear, anxiety and a loss of confidence." Share on X

black and white photo of woman staring out of a window — Living with a chronic illness can result in being seized by fear, anger, anxiety, and loss of confidence, and so much more.

Leaving the house to even go to the most familiar places start to provoke fear and dread; never knowing when your body next is going to fail you – the worry of falling or becoming non-functional when alone, or in an unfamiliar environment.

It’s a hard and miserable way to live. It slowly becomes a life of existing and surviving rather than living. And it’s not a direction I want my life to continue.

New Year, New Perspective?

Amid a new year, and of new beginnings also provides the opportunity for opening the mind to new ways of thinking.

To make a change, I need to change the mantra ‘new year, new me’ to ‘new year, new perspective.’

Yes, last year was complicated and full of challenges and setbacks, but I survived. It may not have always seemed like it, but I got through it.

"Yes, last year was complicated and full of challenges and setbacks, but we survived. It may not have always seemed like it, but we got through it." Share on X

And to appreciate and celebrate those little achievements in the face of such challenges and setbacks. To regard these small accomplishments as small steps toward achieving bigger goals.

A journey of a thousand miles begins with a single step - Confucius

When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time, often extremely tentatively as we wait for the moment our bodies will fail.

"When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time." Share on X

Instead of looking ahead to the next goal, or the next step, there is a need to be present. To learn to enjoy each moment, even among those quiet and banal moments in each day.

To start anew and revamp my mindset, I need to recognise and acknowledge the limitations that are a part of life with chronic illness. And the awareness that the illness may stop me from doing the things that I want in this life. The knowledge that I will experience the frustration, anxiety, anger and fear that comes from living with FND.

But I don’t have to let these limitations drive the next year, the next decade or the rest of my life. I can decide to do the things that I want, but doing it differently to accommodate the limitations imposed by FND.

"We can acknowledge the limitations caused by chronic illness, but it doesn't mean that we have to let them drive the next year. We can do the things we want, but just differently." Share on X

Envisioning The Possibilities

When living with chronic illness, it is accompanied by the many limitations that follow. But that doesn’t mean we have to stop making room for the possibilities of the future. Instead, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us.

"To survive and thrive, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us." Share on X

To live and thrive despite living with a life-changing diagnosis, we must envision the future and its numerous possibilities. To hope that there will be plenty of good amongst the many challenges and setbacks.

And so to survive life with a chronic illness, envisioning hope, and the possibility of pleasant surprises ahead is critical.

Here’s to a fresh new year, and a new decade.

Here is hoping that 2020 is kinder to us all.

New Year, New Beginnings, But Still Sick

January Link-Up Party with A Chronic Voice

It’s been so long since my last post. In the time during my absence, a notable change has occurred – the end of one decade of my life and the beginning of another one, yes, since my last post two months ago I have turned 30 years of age! Of course, the occasion was somewhat low-key, opting for a spa break consisting of being pampered instead of a large party with family and friends which could only exacerbate new feelings of fatigue, and which flashing lights and loud music would be intolerant for the dizziness and vertigo that are already problematic.

It’s funny that when on the precipice of such a milestone is the reflection, not just on the past thirty years of one’s life but a reflection on future plans and the possibilities that lie ahead for the next thirty years. Then there is the barrage of questions that people pose on such occasions, such as “How do you feel?” or “What are your plans now?” It’s as if people view these birthday milestones, such as turning 30, 40, 50 as a beginning of a whole new chapter of our lives. The past finished within the pages of previous chapters and we are reborn as whole new characters in the story of our lives with endless opportunities that await us in the big wide world.

When living with a neurological condition, or other chronic illnesses, however, the view is very much different…for us, these milestones are not the precipice for change and unfortunately are not reborn with a new future and endless possibilities awaiting us. Our bodies are still very much broken and the symptoms that tormented us during the previous chapters that are the story of our lives still very much exist.

Pain, fatigue, dizziness amidst the other symptoms that I live with was unaware and didn’t care that it was my thirtieth birthday and they still made their presence felt on a day that was mine. And even since, my thirtieth birthday the promise of a new beginning and chapter has proved to be unfruitful, and the symptoms have been unrelenting as ever.

This has especially been true regarding the pain and trembling in both of my legs. Recently, I read a book that described the pain as a universal human experience. Whether the pain is a physical sensation or through emotional turmoil, pain is something that we will all experience during our lives.

And I totally agree, but although we are all united in the shared experience of pain, isn’t it funny that when we are in the midst of experiencing pain, it feels like an entirely lonely place? This was the case during our recent spa break, when I found myself, in the early hours of my birthday, in excruciating pain while sharing a twin room with my Mum who was sound asleep.

Preparing to start writing a new chapter

Trapped in a body where the pain is ravaging my legs, in unfamiliar surroundings and during the early hours of the morning where everything was still and silent, felt completely alone as if I were the only person alive experiencing pain. Of course, I am not and visiting social media sites such as Twitter and reading the posts from others emphasises the realisation that I am not alone in the fight against chronic pain and that there is an unwavering amount of support from those who understand and live with pain themselves.

It was not just the pain however that has made me feel lonely and isolated as of late, but also the severe trembling of the legs that has often rendered me unable to venture far from wherever I am at the time. More time being spent lying on my bed reading or watching TV programmes or films on my iPad. Even going out, more time is spent sitting in coffee shops enjoying the warm, luxurious taste of hot chocolate while talking with whomever I’m with or spending some time reading. Anything but traipsing around shops as legs often feel like they are too weak to support my weight. This has been particularly emphasised by the number of times my legs have collapsed from under me leading to some rather embarrassing falls in public.

The pain and trembling it seems has made my world smaller once again. Perhaps that is why I have found myself reading more books in recent times, as the stories that I am reading is able to take my mind to new places when my body is limiting to the places that I can physically visit.

In our lives we find that a lot of chapters close and new ones begin, waiting to be written but certain elements within our personal journeys remain, such as living with a neurological condition, chronic illness or disability as an example. However, that is not to say that they have to dictate our narrative, or that the narrative cannot change. It just means that we need to take over the reins of the journey and find ways to take back our control and new ways to cope with the obstacles that are in our way. As the esteemed writer, Nora Ephron famously said: “Be the heroine of your life, not the victim.”

And as I wave goodbye to my twenties and enter a new decade of my life, I hope to become the heroine of my own story, to look forward to the future and the new possibilities and opportunities that lie ahead…