2019 has proved to have more ups and downs than a rollercoaster at a theme park. There have been good times and bad times. A year of uncertainty and frustrations. And plenty of times when the symptoms that accompany life with FND has gotten the upper hand and leading to a loss of confidence and anxiety regarding the future.
Much of this has been documented in the posts that I have published in 2019. So rather than documenting the past 12 months in a blog post, I would like to end the year with a round-up of the most popular posts that I have published this year.
Click on the images to read the entire post.
10 Things I’m Afraid of Due to FND
“When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween. Fear and anxiety yet another symptom of living with a chronic illness and ones which we don’t enjoy.
This post is about airing my neurosis that FND has created in my own life. If you don’t have FND, consider this a small insight into the day-to-day drama of living and coping with a neurological disorder.”
‘A Day in the Life’ With FND
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Many people assume that every day is the same when living with pain and illness. That our abilities and limitations are stable, remaining the same day in and day out. However, pain and other symptoms that accompany chronic illness fluctuate.
Some days I may only experience one or two symptoms of FND. On other days I may complete the whole set. Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day. It’s an unpredictable and uncertain life.”
Seeking Joy In The Midst of Chronic Pain
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If I were asked to sum up my current life in just one word, then there is only one word I could conjure which would adequately describe it. Pain.
From the moment I wake up, and until I (finally) fall asleep, all I can feel is the pain that assaults my body. The pain has become the bookends of my days. My entire life and existence becoming defined by its tight grip. It is all-encompassing. There are no aspects of life that the pain leaves untouched. And it’s become the strongest voice in my life.”
Chronic Illness and Its Graveyard of Buried Hopes
“Hope no longer brings the promise of sunshine and rainbows. Instead, when our hopes and expectations become defeated by illness, we are left with the bitter taste of disappointment. As the number of losses increases and the list of what we can no longer do becomes longer, hope becomes further out of our grasp.
Hope creates incredibly cruel disappointment in the life of someone living with a chronic illness. Hoping that chronic illness will disappear begins a cycle of grief when year after year, its symptoms are still residing in our lives and with no intention of absconding.
While plagued with debilitating and unrelenting symptoms; symptoms that have such a profound negative impact on our quality of life sparks the hope that these symptoms will end. A desire for the end of the distressing and merciless symptoms and the expiration date handed to the current flare. But when upon waking and instantly met with the same crippling symptoms, the flame of hope extinguishes once more.”
Hiding Behind a Mask
“The make-up I apply allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can pretend that I am well. A persona whereby I can inhabit a world of being well. A world in which I am not in constant pain.
But we don’t put on a mask purely for vanity reasons. We also assume a different persona in consideration for those around us. We put on a brave face, hiding pain and the effects of other symptoms to alleviate the worry and burden on those closest to us. When out in the world, conversing with those we don’t know or don’t know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike.”
In The Mirror: Body Image and Chronic Illness
“When diagnosed with a chronic illness, the insecurities concerning body image grow exponentially then we could ever think possible. We develop more of a hate relationship with our bodies, stronger and unyielding to change than ever before. When living with a chronic illness we experience pain, discomfort, and loss of control. All of which also can lead to a change in physical appearance. And which can have a detrimental effect on self-esteem and how we feel about our bodies.
It is hard to love or feel positive about a body that seemingly no longer listens to my signals. A body that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. A game that I appear to have no control in, and which the symptoms have the upper hand. It continually likes to keep me on-and-off my toes, both figuratively and literally! As I make plans and wanting my body to help me fulfil those plans, my body, however, often have other aims, having a mind of its own.”
Blooming Despite Adversity
“Everyone lives with insecurities. But, when living with a chronic illness, these insecurities grow exponentially. We feel sick the majority of the time which strips our self-confidence and sense of self-worth away. The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent.
What we forget, however, is the number of times we have gotten back up after being knocked down by illness. We get knocked down, time and time again, but still, we rise. And when we are back on our feet, although it may not seem like it, we are stronger and more resilient than before. We begin to thrive and bloom when pushing past our demons, accomplishing things we may have never thought possible. However, despite all this, still radiating positivity and happiness despite the harsh conditions of living with a chronic illness.”
Uncertainty of Living With Chronic Illness
“We all, to some extent, live with uncertainty. None of us knows what the future holds, and it can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling.
We may not know when symptoms are going to return, but the only thing that we can be sure about is that they will return.
Living with uncertainty feels like being trapped in an endless cycle of pain and fatigue and other troublesome symptoms. There are some periods of respite in between, although they never seem long enough. And just as we are enjoying this quiet moment of pause, the symptoms repeating. There is a constant repetition of symptoms.”
Finding Beauty In Life With Chronic Illness
“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.”
What You Don’t See About Living With FND
“What you don’t see is that I am faking being well; faking health to preserve my dignity, energy and ability to accomplish whatever it is I’m doing before my legs fail me and I collapse.
You don’t know the effort it takes to fake at being well. And although faking is difficult, it is often easier than exposing the pain that exists, and then having to use precious and already limited energy to defend my permanent state of being unwell.
What you don’t see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain. The pain that I attempt to overlook when among society.”
So, that was the top 10 posts from 2019!
I would like to thank you all for your continued support throughout the year. Let’s hope that 2020 brings you all improved health, happiness and a prosperous and successful future. And I look forward to seeing what the new year will bring, and what is in store for the next decade!
Which post was tour favourite? Are there any topics that I haven’t covered and would like to see on the blog?
Happy New Year All!
