An often lonely battle
Posted by joshrevans92
31st Jan 2021

My story comes through the eyes of a Cluster Headache survivor and how I contend with the darkness it often brings.
This message is to those who suffer with a neurological disorder and to those who contend with chronic pain which detaches them from the outside world.

Those who fight with incapacitating symptoms.

An often-lonely battle...

My personal experience started unannounced with a sharp unbearable pain bursting through my right eye destabilising and leaving me completely unable to function.
Often, I can cope with the pain and discomfort the cycles bring, itís the mental torture that follows I tend to grapple with.

I have always been stubborn so when these first hit I was determined to beat them; however, I completely underestimated the battle ahead. It really wasnít as simple as that.

I would sit in a dark silent room riding waives of pain contemplating everything.

How long could I possibly cope? And did I actually want to be burdened with this life sentence.

A somewhat invisible condition that people often donít get, one you have to explain in great depth in order to gauge a correct understanding. Thatís tiring none the less.

You almost have to explain yourself and justify how you feel.

Those closest to you pay attention and want to understand but you canít describe the severity without underplaying it, the only real way is for them to experience it first hand and you would not wish that upon them not even an enemy.

These are much more than just a bad headache and I would happily swap this for what people perceive them to be.

It is no wonder they have been labelled with such dark names such as Suicide Heads, when you are completely isolated and in unbearable pain thatís exactly how you feel.

You want it to stop and the easiest route would be to seize to exist.

Once the pain subsides you are left with so many questions swilling round in your head.

Will I accept a life full of disruption and pain?
Why on earth have I been cursed with these?
What have I done so wrong in my life to warrant this punishment?

I was recently engaged when I first experienced the symptoms I was madly in love and happy.
The world was at my feet and I asked myself why? I could not comprehend how the best moment of my life was followed by one of my worst.

I felt as if I was being punished for being happy and got swallowed in a hole of self-pity.
The truth is there is no explanation I was a ticking time bomb and chance had it my body would betray itself at that moment.
I am fairly new in terms of my diagnosis (around 18 months) and in my early stages of acceptance this is how I would process it, badly.
My body struggled to cope and I failed to function, I lay completely lifeless days at a time wondering when I was going to stop hurting and praying, I would wake up unshackled by this overwhelming feeling.

I was completely alone. I didnít speak and I cut myself off I punished myself.

The darkness crept in.

I had to reluctantly give up my job of 5 years leave behind so many friends in order to give myself the best possible chance of recovery.
My remission period is often short lived due to other medical factors and only oxygen accompanies me in helping. I have learnt to coexist with the pain in order to get the best out of each day, my honesty landed me a new job and I am able to manage alongside my work to give my all and hold onto some normality.
I still have those overwhelming thoughts from time to time but I had to fight myself often in order to materialise a coping mechanism.
Perspective often helps, I am certainly not alone in this fight.
I had no choice I had to get better at dealing with it, not only for myself but for those who need me.
That was motivation enough to tryÖ
I tricked my mind into self-reverse psychology, a super power if you must. A cause of suffering in order to heighten my purpose.

They may have physically distorted my vision, but they have made things clearer in my sense of purpose.
Once you escape from its grasp, it gives you a real purpose to make the absolute most of your time in between a cycle.

Alongside the physical and mental scarring, it bestowed on me, I obtained a gift.
A gift of understanding and appreciation. To appreciate life and to understand those who fight day in day out.

I drew tremendous strength from others and asked myself if they can so can I.

When I am free from its clutches, I feel invigorated, even if that feeling lasts a moment it gives me a comfort to fight on once more.
The clusters played no part in the happiest day of my life.

Often those who fight the silent battle of mental struggle are the strongest of us all.
The struggles they confront to function each and every day is testament to the strength they possess.
Wear that new sense of strength like armour as you battle with them once more.

Strength only grows through continuous effort and struggle.
Be patient with yourself, educate those who show concern and ease the burden of your struggles by sharing your experience.
Itís an old clichť but the struggle is part of the story and the story is far from over.

Youíve Got This Ö

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