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. This month, I have used the prompts to look at the uncertainty and unpredictability of living with chronic illness.
The Repetition of Illness and Its Symptoms
We all, to some extent, live with uncertainty. None of us know 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.
"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." Share on XWe 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.
Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules. For instance, when living with pain and illness, we need to learn how to pace so as not to exacerbate or trigger the symptoms that accompany such conditions. But sometimes the limits that have worked to help stave off pain or fatigue no longer work, and left wondering what now?
"Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules." Share on XThe Wondering Questions of Uncertainty and Unpredictability
A new diagnosis leaves several questions in its wake. We are left wondering how to interpret these symptoms. And wondering what these symptoms may be trying to reveal. In the wake of a diagnosis, you wonder about all the possible treatments available and whether they will be effective. We begin questioning the reactions and opinions of others when learning of our sudden new reality. Most of all, however, we wonder about our long-term prognosis and how the condition will affect our long-term plans.
"We are left wondering how to interpret these symptoms and what they may be trying to reveal…The uncertainty and unpredictability of pain leave us wondering and pondering many questions." Share on XWhen pain returns or suddenly arrives, we are once again wondering and attempting to identify from where it appeared. Have I sat or slept in an awkward position? Could I have done something to prevent it? Who knows. The uncertainty and unpredictability of pain leave us wondering and pondering many questions.
All in all, being diagnosed with a chronic illness is enough for turning life entirely on its head. After such a pronouncement, there is a before and after. There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak.
"There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak." Share on XPain and Illness Requires Turning Into Uncertain Roads
This new world of chronic illness and learning to live with symptoms is one filled with uncertainty. Every day requires turning into unknown roads uncertain of what we will find there. After waking up in bed, after a restless night starts with a body scan. A way of determining what hurts and wondering what today will bring in terms of symptoms.
We cannot even relax for a minute, however, as often what we think will be a low pain day or one with minimal symptoms doesn’t last, hope extinguished as they suddenly make their presence known. Just when we thought we had reached a turning point in regards to our health, something else affirming its unpredictability. Reiterating the uncertainty of life, controlled by illness and its accompanying symptoms.
Getting Used to Living With Uncertainty
Uncertainty of living with a chronic illness is challenging to have to learn to live with during our daily life. Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will. But unfortunately, uncertainty is something that we have to learn to live with every day.
Getting used to uncertainty, there is a need to learn to use humour when symptoms disrupt our plans for the day. Or to use it to deflect from the often embarrassing consequences that some symptoms can have. For instance, learning to laugh when legs suddenly give way often causing very public falls. It’s also essential to learn to forgive ourselves when such events occur, as often we are unable to control the pain or fatigue that our bodies create.
Desiring Certainty and The “Can” In Life Ahead
Yes, I often desire a more certain and better quality of life. Desiring the destruction of the giant question mark that illness has placed in the road ahead of me. Desiring the ability to make concrete and certain plans, without the constant worry whether my health or symptoms will ruin them, forcing my hand to cancel or postpone them.
I want to desire and feel the excitement of times that I “can” instead of the bitter disappointment for the times that I “can’t”. To take control and become a person who battles a neurological disorder rather than someone who suffers from such a condition.
"I want to desire and feel the excitement of times that I "can" instead of the bitter disappointment for the times that I "can't". To become a person who battles a neurological disorder rather than someone who suffers from one." Share on X
