In The Darkness & Behind Closed Doors

Life with a neurological condition is spent in the darkness.

We live with the symptoms behind closed doors.

Behind closed doors where no one can tell how much pain we are in, or the suffering caused by the many other symptoms that comprise our everyday life with chronic illness.  Our days are spent behind closed doors living with these symptoms.  When we do go out, we do so behind a mask.  A mask that consists of make-up to conceal the effects of living with illness every day.  Effects such as dark circles under the eyes and a general pale complexion that make us look ill.

We live with chronic illness in the darkness. We live with the symptoms behind closed doors. Click To Tweet

But we don’t want to look ill; it’s more than enough to feel so every day as it is.  And so, we don our mask to conceal our ‘sick’ identity.  However, the masks we wear only often leads to suspicion from others who know us.  They are unable to fathom how we can still look ‘good’ and yet claim to be chronically ill.  Many believe we must be exaggerating our symptoms to gain sympathy and attention.

But we don't want to look ill; it's more than enough to feel so every day as it is.  And so, we don our mask to conceal our 'sick' identity. Click To Tweet

But they can’t see.  Nobody can see the destruction that living with constant and relentless symptoms has on our bodies and our ability to function in the world around us.

Life With A Neurological Condition: Pain Often A Constant Presence

This week, in particular, has been hard; the pain has been my alarm clock.  Today, for instance, I woke just before six o’clock, sleep interrupted by a wave of crippling pain in my legs.  Pain that feels like legs trapped in a vice that refuses to loosen. Pain has not only been disrupting my sleep but has also been keeping me up late into the night.  Nights where the pain has been my only companion.

But Pain Is Not Always The Source of Frustration and Despair

As a result of my diagnosis, it is not only pain that torments my legs.  I also endure stiffness and weakness in both of them.  As a result, it takes a considerable amount of energy to get out of bed.  Once I do; however, my legs give way, and I end up in a crumpled heap on my bedroom floor. Unable to do anything else, I manage to haul myself up back into bed.  In bed, I burrow beneath the warm duvet, which provides comfort and security from the cold, which only seems to aggravate the already horrendous pain. Incapable of doing anything else, I catch-up with the world I am currently unable to be a part of via social media, or watch funny videos on YouTube to in a bid to distract me from the pain and trembling that is ravaging my legs.

Eventually, usually after a couple of hours of resting, I can get out of bed and continue with my day.  Often, more often than I’d like to admit, I go without breakfast, my stomach protesting at the very thought of food due to nausea.  On days, I can manage to eat, I grab a breakfast bar, something quick and easy and requires no preparation.

Life With A Neurological Condition: The Invisibility

By looking at me you would not believe that anything was wrong with me, however, for me, it feels as though my legs are working overtime to be able to do everything that others take for granted. Taking a shower, getting dressed, doing household chores and preparing meals is extraordinarily challenging. The continual trembling of my legs, it can feel as if they are no longer strong enough to be able to support my body.

There are not enough words to adequately describe the weakness and fatigue I experience when continuously living with pain and trembling.  Everything is a struggle, and as such, forced to take breaks in between having a shower and getting dressed.  Or between chores that need doing around the house.  Just standing is problematic for me because of the continual trembling, feeling as if I’m attempting to balance on jelly. On the worst days, being able to achieve anything at all is exceptionally challenging.

With a body that can do very little, my day consists of resting on the sofa or my bed in my sanctum watching one of my many TV boxsets or an uplifting film on Netflix.

With a body that can do very little, my day consists of watching one of my many TV boxsets. Click To Tweet

The scenario above is a small snapshot of a typical day.

Life With A Neurological Conditions: Days are Unpredictable

However, as anyone living with a neurological condition can attest, there is nothing typical about our days.

Our days are unpredictable; no two days are exactly alike…Things can change instantly. Click To Tweet

Our days are unpredictable; no two days are exactly alike.  Even minute by minute, things can change instantly.  I can feel fine one minute, and suddenly I am lying on the floor after my legs unexpectedly give way.  Or a sudden bout of vertigo overwhelms everything, knocking me off balance. I found a quote from an old blog post, that resonated with me.  It reads “Life with a chronic illness can change instantly within a blink of an eye, one minute the symptoms are in the background, calm and peaceful…and the next they are wreaking havoc upon your body and impacting your life and routines.”

The Unknown Of Life With A Neurological Condition

The quote sufficiently describes life with a neurological condition.  Plans for going out or accepting invitations to weddings or other social gatherings are problematic to accept.  Why?  Because we are unable to check our diaries, unable to discern how we are going to feel on a particular day. Never knowing the state in which our bodies are going to be on a specific day.

One minute the symptoms are in the background calm and peaceful…the next they are wreaking havoc. Click To Tweet

We are in a constant state of being stuck in the ‘unknown.’

The road ahead of us contains only a giant question mark.  Not knowing what lies ahead of us tomorrow, next week, next year or even further ahead in regards to our health.

Being chronically ill we are in a constant state of being stuck in the 'unknown'. Click To Tweet

But unlike most people, we in the land of the sick learn to love every second, every minute, and every hour, of any of those good days because we know that the bad seconds, minutes, hours or days may be just around the corner.

As unpredictable as life with a neurological condition may be, however, our lives are still an adventure with infinite possibilities waiting for us to explore.