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Body, Boyfriend, Eczema, Family, Holistic Health, Love, Mind, Uncategorized

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.

Pained Expressions

(I do not have many photos of my eczema – as you can imagine I was camera shy during the worst times…)

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…

Real & relaxed

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.


10 thoughts on “Struggling to convey

  1. Ah I feel your pain! I had it as a kid, outgrew it by the time I was 7… But I remember! I still wear the scars. I can’t say anything to make it better except that I understand… Xxxxxx

    Posted by Danny | February 23, 2013, 3:42 PM
    • Thank you for your lovely comment! As a kid it must have been so much worse as you probably could not fully understand what was happening to you… I appreciate your feedback and here’s to living eczema-free!

      Posted by femmegypsy | February 23, 2013, 4:57 PM
      • Yes it’s not something I wish upon anyone. I’ll tell you one thing for sure, milk products made it MUCH worse. Whenever I cut out dairy, my skin got better! Now I live dairy free completely 🙂

        Posted by Danny | February 25, 2013, 12:07 PM
      • Thank you for your advice – I am fine with dairy but gluten/wheat, definitely my nemesis! Although I am mostly wheat-free now I am working on going 100% gluten-free 🙂 Trying to do it slowly so that it is not so overwhelming. Results so far have been incredible! Dairy and gluten intolerances often go hand in hand. Elimination diets are the best and I find it so interesting to see which foods, once cut from the diet, relieve the symptoms! I am sure many people have your same dairy intolerance!

        Posted by femmegypsy | February 25, 2013, 12:37 PM
  2. I remember you at your worst and how my heart broke for you because I could relate. Even though I am now old enough to understand and control my condition, in my mind, the little girl in the tartan school skirt with scratches all over her legs…still exists.

    Posted by Ali | February 28, 2013, 11:51 AM
  3. Oh wow it is so heartening to hear of someone who knows this condition so well too and is confident enough to share…eczema is something only eczema sufferers will ever truly empathize with although other people mean really well and can help too. I was born with this and I blame my short stature on eczema because I never got a good night’s sleep growing up. Doctors prescribed many drugs to me and my body just got fed up. So I had to take a natural healing route through my diet. I am now close to eczema-free. If you ever want to check it out, I detail it in my blog…no one should have to suffer through what we go through!

    Posted by Mie Ululani | March 4, 2013, 6:05 PM
    • Thank you so much for your heartfelt comment! I appreciate the feedback so much! The natural healing route is always best, I also got so sick and tired of being prescribed anti-anxiety medication and cortisone cream and pills – just paves the way for a hundred other problems and side-effects. I will definitely take a look at your blog 🙂 Thank you for sharing your thoughts! (PS. love the name of your blog – will explore it in more detail when I have some time).

      Posted by femmegypsy | March 6, 2013, 5:10 PM
  4. Halo!! 🙂 wow ek love dit om jou goed te lees! Die ene oor ons familie se ekseem was baie nice gewees…dankie vir die tips…gaan dit gebruik. 🙂 Hope your eczema gets better soon… I must say, I stuggle everyday with the eczema and I hate it, but it has made me such a strong person. I met God through the eczema through my Pastor that prayed for me for healing..so my story ended in a good way I would say. keep on writing awesome posts and strongs for the futher. have a lovely day! lovies… 🙂

    Posted by Vicky | March 20, 2013, 2:56 PM
    • Hi Vicky! Ek waardeer jou reply so baie 🙂 Dankie dat jy lees en altyd vir my terugvoering gee! Good things ALWAYS come from the bad and just makes us stronger people! Refreshing to hear your point of view and story too – dankie! Lekker dag ook en kom lees gerus weer xxx

      Posted by femmegypsy | March 20, 2013, 3:00 PM

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