Deterioration: A Threat That This Isn’t Over

As I stare out of my window, I witness the seasons changing. I saw as the leaves fell from the trees outside. The ground suddenly became a beautiful canvas of colours with orange, red, yellow, and green hues. The days gave way to cooling temperatures and darkening afternoons that stretch long into the night. And I have watched as heavy rain has pelted against my window panes. We can reconcile such changes by switching on cosy lights, wrapping up in chunky knits, or sipping a hot drink. But, sometimes, we cannot so easily accommodate change. Instead, change can be confronting and heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn’t over.

"Change can be heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn't over." Share on X

Deterioration: A Threat That This Isn’t Over

The change and abrupt worsening of symptoms can develop suddenly, without warning. I know that it catches me completely off guard when it happens to me. It reopens the wound that living with a chronic illness has created, like a scab breaking open again and again. And the longer the worsening of symptoms lasts, the more it bleeds. Anxiety once again seeps into every facet of my life. During this recent deterioration, I had hoped that it was a blip. A flare that would dissipate as quickly as it appeared. However, the days turned into weeks and the weeks into months. I then had to consider the awful possibility that this deterioration was permanent. An old mantra tells us, ‘This too shall pass,’ but some storms sadly last forever when living with chronic illness.

"An old mantra tells us, 'This too shall pass,' but some storms sadly last forever when living with chronic illness." Share on X

Dizziness, pain, trembling and weakness in the legs, and vertigo are the main symptoms accompanying my life with FND. The majority of which are constant, debilitating, and affects every facet of my life. But although such symptoms have a profoundly negative impact on my quality of life, I have gotten used to them. I have found ways of coping with them and consolidating them as part of my life.

Deterioration: Losing My Grip On My Identity

But since all the symptoms have worsened, and some significantly so I have begun to feel adrift. I find it challenging to be buoyant by things that once helped me stay afloat. As symptoms become wild and uncontrollable, it is easy to feel like you’re losing control. The longer it continues, the more you become limited by persistent, unyielding symptoms. The thread of who you were and what you could do slowly becomes unpicked. It is easy to feel like you’re losing grip on your identity. And, how you think about yourself and your body changes and morphs into something darker and antagonistic.

My body has not fallen victim to any horrible accidents nor experienced significant injuries that could explain my sudden deterioration. There are no definite reasons for me to blame for my sudden less-abled body, making it all the more difficult to accept.

Compared to how the symptoms are now, they were previously a moderate annoyance. Now they behave like a toddler having one hell of a temper tantrum. Before now, I could not imagine how the pain I was experiencing could get any worse; it already felt raging and out of control. I soon learnt, however, that, unfortunately, the pain can indeed become worse.

Defeated by the Want To Get Better or Stronger

With an intensity I have never experienced before, the pain demands attention. A hot, burning pain radiates down my entire spine. And a severe tingling sensation shoots down both legs while sweat drips from my hair, trickling down my neck. The trembling in my legs is so intense that it feels like an earthquake is happening beneath my feet. And the falls that already punctuate much of my life have also increased with great intensity. Although they have not generated significant injuries, falls have worsened the pain I’m already in, much to my frustration. My legs constantly feel so weak, so much more fragile than before. So, standing and walking feels like even more of a precarious endeavour.

I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win. But I’ve tried, giving it my all. To feel better and stronger, I pushed through pain and fatigue. I have battled excruciating pain during gruelling physiotherapy sessions. I have made the appointments, seen countless doctors and specialists and taken the pills. But despite my great effort and my dogged determination, I remain defeated.

"I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win." Share on X

As The Intensity of Symptoms Expands, My World Shrinks

This sudden, unexpected deterioration has been overwhelming, demoralising and life-changing. As the presence and intensity of such symptoms expand, my world shrinks, my self-confidence obliterated beyond repair. Its broken pieces lay at my feet, ready to be rebuilt. It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you as your legs regularly gives way.

"It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you." Share on X

I have found that my self-confidence diminishes every time my legs give way. My positive self-image vanished as I was left flat on my face on the ground below. The more such incidents happen, the more the anxiety increases. Instead, it becomes easier to avoid situations where such events occur. And as the intensity of symptoms is still severe, it can be easier not to try; to not try and defy such severe, relentless symptoms in case of making them worse or our already fragile confidence.

My New Comfort Zone; Safe but Limiting

For me, most of my time outside of the house now involves sitting in cosy coffee shops. The trembling and weakness have become so intense and severe that they consistently feel they will give way imminently. And more often than not, they do. So now, I have lost confidence with anything involving walking or standing. Now, things like shopping and exploring have become precarious and unsafe, both of which I used to enjoy.

Some days I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; it feels that this sudden deterioration has left a blemish on my self-identity.

"Some days, I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; this sudden deterioration has left a blemish on my self-identity." Share on X

Worsening Symptoms Has Left a Blemish on My Self-Identity

Who I was and the life I led has buckled underneath the heavy burden of illness. The girl who once wished for adventure in the great wide somewhere exists no more. Now such endeavours feel insurmountable as I continue to be hampered by severe, unyielding symptoms. Staying close to home has become challenging and testing, so the thought of going further afield feels impossible.

"Who I was, and the life I led has buckled underneath the heavy burden of illness. The girl who once wish for adventure in the great wide somewhere no longer exists." Share on X

I recently decided to cancel a cruise with my family, which was a difficult and heart-breaking decision to reach. But, I was struggling to cope even at home with such demanding symptoms. I knew that I definitely couldn’t if away from the comfort and familiarity of home. The very idea of a holiday I found painful. It was and is an agonising reminder of the permanence of chronic illness. Although it allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness’s unrelenting symptoms. Because chronic illness never takes a holiday. Chronic pain never takes a holiday. And disability never takes a holiday. Instead, I would have no choice but to pack them all and take them with me.

"Although a holiday allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness's unrelenting symptoms. Because chronic illness never takes a holiday." Share on X

Although I know my decision not to go was the right one, my head still makes me doubt myself. The dark thoughts that accompany the depression proclaim that I’m weak. And my head leaving me to believe that I am letting my illness win by not going.

Grief and Despair; Unwelcome Visitors Once Again

It feels that this sudden deterioration has thrust me into the stormy waters without a life jacket. Its powerful waves pull me under into the dark, murky depths, unable to break free. Drowning in feelings of sickness, symptoms continuing their strangling hold on my life. In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse. It seems that I am becoming weaker and more disabled by illness and its symptoms than before.

"In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse." Share on X

Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, especially as I continually lose the battle with my body. The nights are long, battling with persistent, unmanageable symptoms. Dark, depressive thoughts quickly surface, wanting to give up, not knowing how much more I can endure. Any hope that I once held onto dramatically dwindles as I continue to be defeated by pain and illness.

"Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, and the nights are long, battling with persistent, unmanageable symptoms." Share on X "The only hope I can hold onto is that although the deterioration I am experiencing isn't temporary, the painful, turbulent emotions accompanying it are." Share on X