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
16 Comments
Chronic illness is so uncertain in the short term and long term, and the unpredictability of things is something I’ve found quite difficult to accept and manage, though it does get a little easier over time. “We can never be confident or complacent that the day will unfold as we think it will” – best laid plans often go out the window, though I find I also need to plan with chronic illness, so it’s a bit of a catch-22 where we can’t win either way. Fantastic points and you’ve worded it really well, Rhiann! x
Thank you as always for your lovely and kind words! For someone who often lacks confidence, it really gives such a boost and encouragement when receiving such praise!! Thank you as always!
Wishing you all the best for June and beyond
Rhiann x
Thanks for sharing and joining us as always, Rhiann 🙂 I think a common theme for a lot of us is the frustration of not knowing what’s next, be it tomorrow morning, the near or far future. Those are exhausting thoughts in themselves. I mean, if we had an inkling, at least we’d know what to prepare for. But now it’s like we don’t even know what to put in our backpacks.
Wishing you all that your heart’s desire and lots of love and happiness x
Thank you so much, Sheryl, it has been a pleasure as always to share my insights and take part! It can often be a source of frustration to find inspiration on what to write about as when living with chronic illness and chronic pain there is so much that you can talk about, it still is hard to know what to write when sitting in front of the computer – so thank you for the inspiration and encouragement to write at least something every month. “But now it’s like we don’t even know what to put in our backpacks” – love this quote, it’s so insightful and a great metaphor!
Wishing you all the best for the rest of June and beyond, as always!
Rhiann x
Hi Rhiann, lovely post on the prompts. I really wish I could show you a doodle I did yesterday it looks exacly like your pic with the road coming out of the mountains. Our illness is exactly like jumping in a car without any destination or expectations. I’d prefer a bit of Thelma and Louise style road trip. But I love what you said about concentrating on the ‘cans’ instead of the ‘can’ts’ I think that was very insightful. I hope June is being kind to you! Take care x
Thank you so much, Niamh! I hope that June is being kind to you too! Focusing on the ‘cans’ instead of the ‘can’ts’ is incredibly difficult, and is a steep learning curve to manage it, but is one which really helps to keep positive and stave off the grief and frustration of living with such uncertainty every day that goes along with this ‘chronic life!’
Take Care
Rhiann x
Reading this reminds me of when my husband was first sick, although we didn’t know it was a chronic thing at first, so we just kept planning things as if he would get better. We’re more used to it now but this uncertainty is still often a frustration. Thanks for the post!
Thank you so much, Katherine, for taking the time to read and for reaching out and sharing your story. Yes, uncertainty can be a difficult and frustrating aspect of living with a chronic illness. I have learned so much over the years about my limits and planning things which I can do despite symptoms that are so bothersome, but somehow I still manage to get it wrong often! It seems that chronic illness is an endless educator, even after many years of living with it!
Best wishes
Rhiann x
Hi, Rhiann! I loved reading this. I hate uncertainty and life is definitely full of that when you have a chronic illness! I want to be a person who battles chronic illness, not a person who suffers from it – I love how you phrased that part ?
I can so relate to your thoughts. I certainly feel like the goalposts are being moved in my health (sometimes) daily. Wishing you the best.
Thank you for reading and commenting Lisa, wishing you all the best also x
Hi Rhiann! I enjoyed reading your take on the prompts this month.
Thank you so much Kathy x
“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.” This is so true Rhiann! As always, you’ve articulated exactly what it’s like to live with the uncertainty that goes along with chronic illness. I always enjoy your posts, and this month’s link-up is no exception. Blessings to you!
Thank you so much, Terri!!
You’ve captured how living with chronic illness is such a balancing act and a life of acceptance of both uncertainty and the can moments. I wanted to tweet each and every one of your quotes they were so beautifully written. Thank you for saying the things that many of us think about and tend to feel alone in.