Struggling to convey

The strongest have their moments of fatigue. – Friedrich Nietzsche

I have lived with the exhausting physical side-effects of eczema as well as the debilitating emotional impact of this disease for many years.

I finally found a manageable routine to incorporate into my life which has curbed the impact of my suffering.

At the time of writing this post, I am proud to announce all eczema patches are clear, and have been so for about a month now. Before that for a couple of weeks. I count the clean and clear moments in small increments, it ensures for increased moments of happiness and relief. During my second year of university, my suffering was at its worst. For the past two years when I do get flare ups, they are far more contained and I am able to manage the effects better. The scarring on my legs and arms is probably only visible under my scrutiny. We are all far more judgmental of our own appearances than others…

I would like to start sharing my experiences and the many methods and ideas I tested as I found reading other sufferer’s stories and subsequent advice helpful.

People struggle to comprehend what it means to “suffer” from eczema. Dry skin? You suffer from dry skin? I do not blame them: people suffer from cancer, heart conditions, diabetes, cholesterol. These are all life-threatening and common diseases. What people do not understand is; so is eczema. Yes, eczema can be life-threatening. I do not blame people for this. Before this disease encroached on my life I also believed it was a mild dry skin condition that caused red, itchy wrists. It is far worse.

Wearing clothing is excruciating. You are constantly in agony, constantly self-aware and constantly crying or on the verge of another breakdown. Not to mention the thousand of Rands spent  (and time that can never be again) on doctors, dermatologists, kinesiologists, homeopaths, medicines and creams.

Eczema can lead to late-night emergency clinic visits as you have scratched deep craters that will not stop bleeding into your arms and legs and you are writing your final second year accounting exam the next morning.

A panic attack ensues. You need a tranquiliser. You desperately need rest. Your eyes and body feel hollow after months of excruciating and agitated “sleep” after which you wake up to sheets spotted with your own blood and disgusting dry skin flaked all over the sheets.

That is embarrassing  What is also embarrassing is people in your university class randomly asking you what is wrong with you. Why do you look like that. People stare. They don’t mean to but they do. It is embarrassing when either your ma or your boyfriend has to wash you gently like an invalid because your skin has become so thickly encrusted and weepy that you can no longer bend your arms or your legs.It is too painful.

Words cannot convey the extent of Eczema’s cruel touch. 

I have tried my best above but I also found a forum called Eczema Voice where eczema sufferers have written poems voicing their feelings about the disease. I have posted a few that I related to the most:

 By Ginny on Saturday, July 07, 2012 – 09:32 pm:

The itch is excruciating
It takes over my brain
My skin is tearing
The only relief is the pain.

Thickened, raw
Red and sore
hot as Mordor
I can’t take any more

My eyes are all dry and puffy
And my legs are inflamed
Everything hurts
I feel so ashamed

I itch and I scratch
I scratch all day long
the irritation is persistent
and I know that it’s wrong

It prickles and stings
all day and all night
I’ve tried all solutions
but no help is in sight

Diets, acupuncture
Chinese remedies and herbal potions
Steroids, creams, ointments,
antibiotics and random notions

When they tell me to stop it starts a fight
They complain about one measly bug bite
If only they knew the emotions I was concealing
If only they knew the emotions I wasn’t revealing
On a never ending journey towards healing

Can’t go out in case people laugh
‘It is more than just a rash
At the pool kids parents drag them away
Getting questioned almost every single day
I dream of soft skin

Velvet smooth and silky
of waking in comfort
a perfect brand new me

By Dead J on Monday, June 29, 2009 – 12:12 pm:

Eczema, what an ugly name, 
To us, the infected, it brings us shame.
A cure? I think you must be dreaming,
Think of Martin Luther as you rub the cream in.

Triumph over adversity? What a novel idea,
How about burning raw & red, instead of smooth and clear?
Upshot is they say ”it comes & go’s”
Reality is nobody knows.

See me, but don’t point or stare,
Heel me, let my body repair.
I ask you for patients & grace,
Burn yourself, maybe you’ll have a taste.

”Accept yourself” is what you ask me to do,
I’ve done that, it didn’t work but thank you.
Boiling hot water brings the rush then the pain,
I know it’s not worth it but I’ll do it again.

Peel, rip, tear & scratch
Doctors know they can’t stop that.
Apply, sooth, cool & calm
Covered neck, knees, hands & arms

Always aware of others around me,
Oh look, another inflammatory reaction’s found me.
I know why oh why I can’t sleep at night,
Because I scratch, rub & rip till my need subsides.

By Scratchetywitch21 on Wednesday, November 07, 2007 – 10:34 pm:

I Hate itching, but
I Love scratching
I hate scabs, but
I love pickin em

I hate it when it flares, but
I love it when it heals.
I hate it when they stare, but
I love to set them straight.

I hate to suffer, but
I love the relief when the itching stops, however brief.
I hate the dreaded E word, it makes me itch just thinking, but
I love the strength and courage I see,
in others and in me.

By jo on Wednesday, September 06, 2006 – 07:53 pm:

I smile and laugh in a fun carefree way
Where does she get the nerve? They say

Running my fingers through my hair
She’s acting pretty. How does she dare?

Taking the menu from the man
What the hells wrong with her hand?

Up close then, they see my face
Their eyes widen. What a gross disgrace

You should be ashamed and hide
If that were me, I’d never go outside

And the most unbelievable thing of all
is the man who kissed her-so handsome and tall

I have overcome my “moment of fatigue” and will be sharing with you all – over a series of posts – on how I became strong again.

Please share your thoughts with me in the comments section below. I would love to hear about your experiences and would love to answer any specific questions in my posts going forward.