Today I lay on my bed, incapacitated. Impaired and overwhelmed with intense and debilitating symptoms. Severe shooting pains in my back, travelling down my legs. Extreme dizziness in which the room refuses to stop spinning. Crippling fatigue. All of which has followed me from the moment I got up this morning. And undoubtedly will continue until I go to bed. This incident is not isolated, however. It occurred yesterday and will inevitably follow far longer than just tomorrow. My life is one example of the enduring legacy of chronic illness.
Unable to move or go anywhere, I have no choice but to live inside my head. Alone, with only dark thinkings, concerns and worries for companionship. But when living with chronic illness, the mind rarely consists of thoughts regarding the present. Instead, the ghosts are that of the past and future.
"When symptoms are bad, I have no choice but to live inside my head. Alone, with only dark thinkings, concerns and worries for companionship. But such thoughts are rarely of the present. They are of the past and future." Share on XWhen living with chronic illness, and especially at times of intense suffering, much time is spent wishing for the past. There are so many times when I desperately want to return to a time when this condition did not exist. Or a time when the symptoms were not such a significant part in everyday life.
"Much time is spent wishing for the past. There are so many times when I desperately want to return to a time when this condition did not exist. Or a time when the symptoms were not such a significant part in everyday life." Share on XThoughts of the future prove to be even more terrifying as we worry about the future. When I imagine the future, I fear my health will be much worse than it is now. And a fear that I will become even more dependent on others than I am currently.
"Thoughts of the future prove to be even more terrifying as we worry about the future. When I imagine the future, I fear my health will be much worse than it is now, and I will become even more dependent on others." Share on XThe Trauma of The Present When Living With Pain and Illness
But very little time is spent dwelling on the present, even though mindfulness and meditation educate us on the importance of doing so. But the here and now offers its very own traumas.
"But very little time is spent dwelling on the present. Because the here and now offers its very own traumas. The present embodies much pain and suffering, which has no pause button or end date." Share on XThe present moment embodies pain and suffering, which has no end date or pause button. Even though there was a time before illness and its accompanying symptoms became so firmly tethered to my life, it now feels that it has an enduring legacy on the rest of my life.
It has cast a dark, uncertain shadow over the remainder of my days, creating anxiety and fear for what it next has in store for me. I have lost so much because of FND – my mobility, confidence but it continues to steal things. And the anguish that the illness may, or very likely will worsen over time, constantly hangs over my head.
Still, people constantly ask whether I am better. Only then to be at the receiving end of exasperating looks when I admit that I am not. Or being at the receiving end of cliched get well soon cards during periods when symptoms are at their worst. All well-meaning but only serve as painful reminders of this illness’s permanence that impacts my entire life.
"I am often at the receiving end of questions on whether I am better. Well-meaning, but these questions only severe as painful reminders of the permanence of chronic illness that continues to impact my entire life." Share on XThe legacy of chronic illness and its repercussions are enduring, relentless and all-consuming.
Still, it’s almost as if the definition of the word chronic has escaped the memory of everyone lucky enough not to experience it.
The Insidiousness of Chronic Illness
Chronic does not mean temporary. Nor is chronic defined as being predictable, consistent or monotonous.
Instead, it is something that is and continues to be insidious.
Illness and its accompanying symptoms became the most undesirable routine. But as much as unpredictable illness can be, it has also become the most predictable aspect of my life. Everything changes, but at the same time, nothing changes. Each day becomes consumed by the very same symptoms and limitations from the day before. Some days are better than others, but the symptoms are always there, constantly a part of my life. Although time continues to go on, it often feels that for me, it does not. Instead, it is like time has become stuck on pause.
"Some days are better than others, but the symptoms are always there, constantly a part of my life. Although time continues to go on, it often feels that for me, it does not. Instead, it is like time has become stuck on pause." Share on X
Chronic illness is like a squatter. It enters, taking residence and then refusing to leave. Playing friendly with it and gentle persuasion does not work. Instead, it constantly adapts, becoming more robust and resistant to defeat. It becomes an ongoing deal, one that you are unable to ever ‘get over.’
No, instead, every single day becomes a fight, a fight between myself and my fragile, malfunctioning body. Yes, it helps to keep me alive but it feels that it is intent on persecuting my every moment.
The journey of living with such an illness is disheartening as well as deeply frustrating. Setbacks and disappointment inevitably follow signs of progress and improvement. Although sadly there seems to be many more setbacks and disappointment than ones of progress and improvement.
"The journey of living with chronic illness is disheartening as well as frustrating. Setbacks inevitably follow signs of improvement. Although there seems to be many more setbacks than ones of improvement." Share on XThe intense pulsating pain wreaking havoc throughout the entire body has become an unwelcome but sadly too familiar intrusion with the beginning of each new day.
The Enduring Legacy of Chronic Illness
But illness has an enduring legacy, so it is not just the here and now interrupted by its symptoms. No, the signs of ill-health will be forever crashing moments of carefree fun, parties, celebrations and relaxing holidays.
"Chronic illness has an enduring legacy, so it is not just the here and now interrupted by its symptoms. No, the signs of ill-health will be forever crashing moments of carefree fun, parties, celebrations and relaxing holidays." Share on X
Every pain and strange sensation is here to stay. Forever. No longer can muscle strains or sprains heal with heat or ice. Muscle stretches or exercises no longer ease the uncomfortable tightness. Instead, the pain never goes away. No longer are dizziness or overwhelming fatigue are mild symptoms of an acute illness; they are now permanent. The all-over, throbbing ache and trembling are not rare occurrences; it is my reality every single day, 365 days of the year and beyond.
Enduring Yes, But Never Used To It
However, it does not mean that I am used to this disorder or everything that accompanies it. There is still a shock to the system whenever symptoms suddenly emerge. Grief ebbs and flows, becoming stronger and more intense when symptoms intensify or during extremely debilitating flares. My life with this disorder is constantly in flux. There are times when I can cope beautifully with the ups and downs of living with FND. At other times, however, all I want is to curl up and cry with the injustice of living with an illness that will never disappear. And the injustice of having to endure such severe and debilitating symptoms all day, every day.
I adapt to the changes in my body and the increasing limitations with no other choice but to do so, but still remembering what I used to be capable of, but which is now no longer accurate. Even if I prefer not to think of the losses incurred over the years of living with illness, my medical records track them for me. I can hope for remission or a cure to return to the normal I knew many years before but knowing with great sadness that it is an impossible dream.
Because chronic illness is enduring, as well as the legacy it leaves behind.
