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 will be musing on how this chronic life is very much like playing a continuous game of the classic board game ‘Snakes and Ladders.’
Life With Chronic Illness Is Like A Game of Snakes and Ladders
Do you sometimes feel that you are winning in life; landing on the bottom rung of a ladder, climbing further and further toward success and fulfilment. But only then for life to take a sudden downturn. Landing on a snake and forced to slide downwards toward despair.
Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak.
"Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak." Share on XUnfortunately, during recent weeks, I have been finding more snakes than ladders in my chronic edition of the classic board game.
Once again, the weakness and trembling in the legs have become worse. I have been finding myself on the floor, again and again, after my legs give way with no warning. Living with a neurological disorder is continually finding new bruises but having no clue of where they have come from, or how we arrived to develop them.
As such, I am also finding a significant decrease in my self-confidence. The weakness, debilitating trembling and the falls have made me afraid of my own body; no longer confident in its ability to keep me safe and free from harm. Fear causes tentative steps toward the unknown, toward unpredictability. And it is never-knowing when my legs will next decide to collapse from under me suddenly.
The Anxiety That Accompanies Illness and The Fear of What Could Be
Going out with trembling legs, aware of the unpredictability of such symptoms, and recognising that my legs could suddenly stop working at any moment causes anxiety. A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen.
"A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen." Share on XThe knowledge that the ‘what could’ happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built.
"The knowledge that the 'what could' happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built." Share on XEvery Day Needing To Find Our New Limits
Time and time again, I have discussed how life with chronic illness never changes; every day feels like the day before. That living with chronic illness can feel like you are living your version of Groundhog Day. The truth is, however, that not every day is the same; symptoms can come or go, or they can remain stable or get worse. In regards to the symptoms that accompany the disorder with which we live, every day is a blank slate.
And as such, each day we wake, not knowing the limits or abilities that we possess, and the restraints that illness now poses. So every day requires researching what our body can handle and what we can and cannot do. Tentative and careful steps every morning as hasty research into the current levels of pain. Or the current rate of mobility. A ritual performed every day even with the dreaded knowledge that it could change within a blink of an eye. There is a relief when the research suggests low levels of pain and relatively good mobility. But on the days where the pain is crippling, and walking short distances is difficult, we face the day with dread and apprehension.
Inability To Enjoy ‘Dates’ When Suffering Disabling Symptoms
Living with such debilitating and limiting symptoms means that dating is on the last thing on my mind. And it even if it were, I often feel that nobody would be interested in me. I often feel like a burden and not good enough. Being stuck in the house the majority of my time, due to disabling symptoms, when I do go out, I like to think of the trips as ‘dates‘ from my prison cell.
Although I appreciate these ‘dates’, and the time away from home, I have been unfortunately struggling with them lately, not enjoying them as I once did. It is challenging to enjoy days out when legs are trembling so badly and feeling completely weak that they might collapse at any moment.
Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. Afraid that today will be the day when legs will give way and suffering a humiliating fall in public. It’s enough to make you want to stay inside the safety of our comfort zone where our ‘dates‘ can include watching a film on the sofa instead.
"Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. It's enough to make you want to stay inside the safety of home." Share on X
And then there’s the overwhelming fatigue that such symptoms cause. The mere thought of going out even for a short while seems like being asked to climb Mount Everest. I was recently reading about the potential capabilities of energy recycling. A process where the energy that would otherwise be wasted and converting it into electricity or thermal energy -thereby enabling us all to reuse energy. It left me wishing that I could reuse lost energy which would allow me to do so much more than I can do currently.
"Oh, how I wish we could reuse energy something that would allow me to do so much more than I can do currently." Share on XThere May Be Snakes Now, But There Still Will Be Ladders Too
As I recount on the journey of living with a neurological disorder, there have been highs and lows. Unfortunately, like when living with any long-term health condition, the lows have outweighed the highs. In this life of ‘Snakes and Ladders,’ I continually seem to keep landing on the snakes, causing me to travel further from the place I want to be. Despite this, however, I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes.
"I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes." Share on X
2 Comments
Hi Serene,
Super love this metaphor of chronic illness – never thought of this one before and it makes such good sense! Definitely adding this to the ‘how to explain’ list! And totally understand the difficulties with dating thing. I am always curious as to how other spoonies cope, especially if they don’t live in a city but in a small town where it’s even harder to get out and meet people. Sending love! xxx
I can definitely relate to living with chronic illness feeling like a game of snakes and ladders, although it doesn’t seem to matter how the dice fall, I always land on a snake. Thanks for sharing, I really enjoyed reading.