Inspired by Halloween and the podcast ‘10 Things That Scare Me‘ and the fantastic ‘10 Things I’m Afraid Of (With MS)‘ by Ardra Shephard (Tripping On Air.) I thought I would share my own 10 Things I’m Afraid Of, but with the added qualifier of ‘due to FND’. Because living with such a condition can invoke many fears and anxieties.
The temperatures are starting to drop, the air becoming cold and crisp. Leaves on the tree are changing colour, ready to fall onto the ground below. Autumn is definitely upon us, and as we near the end of October, Halloween is also fast approaching us all. The time of year when confronted with ghosts, ghouls and other scary creatures.
A season that encourages us all to scare and be scared. Perhaps, the only one time of the year that we enjoy feeling frightened and in fear of everything spooky and supernatural.
Illness Makes You Afraid
When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween. Fear and anxiety yet another symptom of living with a chronic illness and ones which we don’t enjoy.
"When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween." Click To Tweet
There are many fears that chronic illness can induce; fear of the future, fear of being a burden, fear of ending up alone, too name but a few.
Even from a young child, I have always been extraordinarily meek and nervous; picking up things to become afraid of came as easily as breathing. But recently, I have noticed that specific fears and anxieties became borne from living with FND. Perhaps those of you living with FND or other similar conditions will resonate with these fears. But if you don’t then consider this an education into the everyday neuroses of someone living with a neurological condition.
So here are the 10 things I’m afraid of due to FND.
10 Things I’m Afraid Of Due To FND
1) High Ceilings and Big Open Spaces
For as long as I can remember, I have had problems tolerating places that are big and open with high ceilings. Places including cinemas, large stores, museums and churches to name only a few. Part of the neurological disorder I live with includes issues involving the vestibular system. The vestibular system is the sensory system that largely contributes to the sense of balance and spatial orientation for coordinating movement with balance.
Damage or pathology of the system can induce vertigo, instability and loss of balance, and often accompanied by nausea. For those living with vestibular disorders, it can be tiring when attempting to sort out vision and balance signals. It can become even more difficult in busy and noisy environments such as large stores, crowded stadiums, in cinemas, or navigating busy, crowded streets.
"For those living with vestibular disorders, it can be tiring when attempting to sort out vision and balance signals. It can become even more difficult in busy and noisy environments…" Click To TweetSuch environments are challenging for a person with a vestibular disorder. It is difficult to rely on visual clues about balance and movement because everything is moving. The lighting isn’t ideal, and stable anchors such as walls are far away. And given that another of my symptom of FND includes trembling legs and so being so far away from walls or anything to hold onto is unnerving because of the fear of them giving way. It becomes more manageable, as a result, to avoid such places altogether.
2) Heights
It’s funny. I’ve never liked heights even from a very young age. I could never tolerate climbing frames or climbing up a slide in a playground. For years, I thought it was merely a phobia.
Balance is contingent upon not only the inner ear and vestibular system but also the eyes, sensors in the legs and feet. When the signals the brain receives from these systems ‘agree’, we feel balanced.
But sometimes the signals from these systems conflict. As we stand up high, for example, our eyes are unable to report the ground’s position accurately. It leads to the brain unable to receive accurate signals from the different systems, and not knowing which information to trust. As a result, we may feel dizzy, unstable and disorientated. FND already induces such symptoms, and so being up high feels like a very unsafe place to be.
3) Falls
No matter how many times I’ve experienced falls (which is a lot), I still have not got used to this regular occurring phenomenon of living with FND. They are unexpected, unpredictable, and most of all, it hurts. The consequences of such accidents leave its evidence on my body in the form of many bruises on various parts of my body.
"Falls are unexpected, unpredictable, and most of all, they hurt. The consequences of such accidents leave its evidence on my body in the form of many bruises." Click To TweetThe fear of falling in public is the worst part of living with a neurological disorder. The stares of people, even the well-meaning offers of help make the situation so much worse. They can make us afraid; afraid of going out and becoming fearful of our own body.
4) Rain
An indeed strange fear for someone living in a country where it doesn’t just rain, but it pours. But rain and especially heavy downpours is something that I have become to loathe, and often fear. But FND has unfortunately gifted me with the inability to shield myself from such surges. Forced to navigate the world with the aid of a crutch, I am unable to hold onto an umbrella at the same time. I have no choice but to withstand such conditions, becoming drenched as a result, with the wet clothes I am wearing sticking to my already cold skin. The cold and damp begins to seep into my bones, increasing the pain that already exists. Now, whenever I look out of the window, met with the sight of raindrops, my heart sinks, with going out an increasingly unwelcome prospect.
5) Being Cold
I’m cold right now, but I’m also afraid of being so in the future. I’m a person who feels the cold effortlessly, which is ghastly when the chill increases the severity of chronic pain, which is already constant and often horrendous. Pain that seeps down into the bones can feel as the bones will crack with its unkindness. So Winter and the cold temperatures that it will inevitably bring becomes something else to fear.
"The Winter and the cold temperatures it inevitably brings increase the pain already felt and so becomes something else to fear and dread." Click To Tweet6) Queueing
No, I do not fear to queue because I am impatient and unwilling to wait my turn. The trembling in the legs is constant, severe and unpleasant even when walking. But the feeling is even more relentless when my body is quiet in motion — the feeling worse when standing still, such as when standing in a queue. The fear that they will collapse becomes very real, and so queueing becomes something to fear.
7) Loss of Control
Another big fear of living with FND or any chronic illness is the fear that you have lost control over your own life. A fear that we have been forced out of the driving seat, replaced by the new diagnosis. The plans for the future, both short and long term now put into the future. From one day to the next, hell even one minute to the next we cannot predict how we will feel. Or what we are capable of, and so we fear that we will never regain control of our lives. A fear that we will become so lost within pain and illness, that it will become all we are.
"From one day to the next, hell even one minute to the next we cannot predict how we will feel. Or what we are capable of, and so we fear that we will never regain control of our lives." Click To Tweet8) Going Out Alone
With the severity of my symptom, including trembling legs, constant dizziness, visual disturbances and unpredictable attacks of legs giving way, going out alone is not advisable. But there is also a fear of doing, so that holds me back. If my legs were to give way and left unable to get back up and I was on my own, then I would be left feeling scared and vulnerable. In the past, I have experienced episodes of losing my vision also. It can be frightening even in the presence of someone I know. I can only imagine the fear if it were to happen if alone. Sometimes even the thought of going out invokes fear.
9) My World Shrinking
FND can take a lot. There have been so many losses because of the condition, and as it has made my world smaller. As my mobility worsens, I become limited by the places where I can go, or even get to and my world shrinking further as a result. And so I fear the increasing limitations that FND imposes and the likelihood that my world will begin to become smaller and smaller.
"As my mobility changes, I become so limited; my world becomes smaller as a result. And so I fear the increasing limitations that FND imposes and the likelihood that my world will begin to shrink further." Click To Tweet10) The Unknown
The biggest fear of living a neurological disorder like FND is the unknown. The condition itself is unpredictable. One which we never know when symptoms are next going to appear. And unable to predict what the disorder will take away from us next. Even from day to day, there is an unknown whether we will feel well or sick. Unpredictability becomes the norm, as illness wins, making it difficult to plan our days, our years or our lives.
"The biggest fear of living with FND is the unknown. The condition itself is unpredictable. One which we never know when symptoms are next going to appear. And unable to predict what the disorder will take away from us next." Click To TweetAnd a fear of the future, afraid of what will become of me if I end up alone. And how I will cope and manage with no help.
Well, that is my list of 10 Things I’m Afraid Of (Due to FND). What are you afraid of as a result of the condition you live with? I’d love to hear your own thoughts.
Alison Hayes
Rhiann – powerfully written! That sense of losing control and losing power is so common – I’ve fought my way through that so that a lot of the time I have some sense of control, but it was a hard-fought battle. I absolutely get those fears and concerns – while my symptoms do not involve vestibular issues, I have a lot of unexpected muscle movements, and I spent years afraid to go out alone or even just being seen in public at times. I’ve had a few people try to ‘rescue’ me from the seizures they were insisting I was having(even though I was fully aware and able to tell them that I didn’t need help), it’s really frustrating when others don’t understand. I have mostly gotten past that embarrassment by accepting that my body simply does what it does, and there’s no point in having that add to my stress, but it took me a long time to reach that point of self-acceptance! It helped me a lot, since FND is so stress-responsive. I’m thinking of you and hoping that you can reach a balance point where you can go out and enjoy yourself more!
Rhiann Johns
Hello Alison, and thank you so much for spending time to comment on this blog post fellow FND warrior! Yes, the loss of control is definitely one of the biggest battles towards acceptance and moving forward with this condition, a part of life but not the defining factor in my life. Yes, going out, is difficult and although it can trigger some anxiety, I think it’s more of a loss of confidence for me, especially with the unpredictability of symptoms. In less than a week, I have experienced a sudden loss of strength in legs, leaving me collapsed on the floor. And I am afraid it did invoke tears and a lot of embarrassment, despite me having thought I had accepted the condition. Still, I hope it won’t stop me from going out, especially to the theatre as a night out can be so welcome when being stuck home is the norm!