15 ~ Tittle tattle ~

“Did you see what she posted?”

“Oh my! What’s wrong with her?”

“Attention seeker? Using the excuse of sickness”

“What else!”

“As if everything revolves around her sickness”

Not that I ever mentioned it should 😝

Prior to falling ill I used social media for various reasons – following certain people of interests, articles, places etc… However I am not the type who posts everything regarding my personal life.

After needing to interact with fellow chronic warriors, following different sites & pages regarding my diseases.. I began using it more but maintain a disciplined time limit of usage.

Lol some people think I lay in bed all day & do nothing else! That’s only during flares but even while in bed I do things that are meaningful.

Remember, even if you do nothing during rest.. You are NOT wasting time. You are doing a favor & service to your body. Do not feel guilty for it.

I’ve been there & know that we always end up pushing ourselves exceeding the limit.. Some people have no option & have to, others do have an option.

Either way we forget we aren’t normal & not expected to be doing everything a normal person can. Not being capable of doing as much as others does not make you a failure!

I have to be reminded about not being normal often. A reminder proves beneficial.

Resting should never make you feel guilty. You owe it to your body so that time afterwards can be more productive. You are doing exactly what you need to do. Recovering!

Most people do not have 1 chronic illness. That’s quite impossible.

It is a full time job with an unimaginable reward reserved. Key is firm hope + conviction.

Our illnesses keep us busy & we become exhausted simply existing.

Some days are quite productive. Then there are days where the exhaustion & fatigue hits over. Our bodies feel like a bus ran over. Though, most days the fight is won.

There are days i do nothing but feel as I’ve spring cleaned the entire house from top to bottom & wall to wall 😂.

I also have a habit of expressing the way I feel using examples like a “deflated balloon or a sucked out Capri-Sun” 😂😂😂 for people to get an idea.

I am often asked: “what do you do the whole day?”

Reply: After being diagnosed & learning to manoeuvre my way through a new life. I searched for avenues to throw my energies into & take on new challenges not taken on before.

Activities that are suitable to my body’s requirements. It compensates the studies / profession I can no longer practice & provides a great sense of fulfillment.

We are still capable of being an asset to humanity. Many feel that they’re useless.. Their existence after chronic illness means nothing.. Or even if they do not feel so, family member’s make them feel this way…

Cherish your existence.

Believe you are alive for a great reason.

For a higher purpose.

Your illness itself has a hidden & valuable purpose.

If your profession is no longer suitable to your illness & you require disability benefits then so be it.. With that ALWAYS remember there are many new opportunities waiting ahead for you..

New adventures and chapters waiting to be inked

There lays an ocean within you

One stilled with no waves

One filled with pearls,

One with beautiful colors overlapping it’s vastness

You may drown, but drowning will engulf your being with satisfaction

Having reached the bottom, the purpose of your inner self will be achieved.

---

A common problem almost every chronically ill person becomes frustrated with is

MISUNDERSTANDING.

Among family members, colleagues, strangers & Drs.

Everywhere, i read:

“We are not being understood. No one is willing to read the full effects our illnesses have on us. We are constantly judged. We are told harsh comments. We are denied disability benefits & struggle more with the re-applying process.”

Dear fellow winners

[ DECEMBER 2016 ]

Once i posted a picture on an account with the purpose of creating awareness for normal people following to understand the reality of nerve pain.

Someone who I thought was good turned that picture into a drama of “she’s seeking attention” & circulated it.. Which in turn caused loads of repercussions.

Many places i went people looked at me with those suspicious thoughts roaming through their minds.

People who believed my illnesses to be real, began doubting me.

Some lost compassion.. Not that I missed any. It was replaced with sincere people who sincerely cared. It taught me who’s true & who’s fake.

To add extra flavour to the drama, a Dr from whom I requested an opinion also made up his own false conclusions based on the illiterate report of neurologist Mr 1…

Life then took a new twist with a “fresh” chapter that continued non stop for 6 months until I landed in hospital – June 2017.

In the end I realised for our own peace of mind – sometimes we have to be okay & accept the fact of not many understanding.

After that incident I removed most people from my social media accounts besides those I feel are okay to trust.

Follower’s requests are approved or accepted mainly from those that are ill – we share a different understanding & have various fruitful discussions.

Occasionally others requests are accepted. Those who I feel will not mistrude anything out of context or create trouble.

Social media is my main platform of interaction, “going out” in other terminology. Keep in mind I’ve always been sociable by nature.

When sitting next to my own family members I have to text or write to converse properly anyway.

Despite my life in most aspects being dependant on devices 24/7, I set times where I unplug for specified durations.. To reconnect, refocus, recharge & ground. With prayer, with nature & with myself.

The point: don’t assume & spread tittle-tattle about a journey not experienced first hand.

We never ask for understanding, but we do request enquiry & learning 😉

I have been diagnosed with a chronic illness the nature of which is fatal. Even if the diseases of others are not terminal, they are diseases that usually worsen / progress over time.

Before you judge us for our choices, remember that we have fought this battle alone with the help of God. If you haven’t experienced this for yourself you’ll never know what decisions you would have made.

Until you’ve walked in our shoes or swam through this deep ocean, remember this:

We’re doing the best we can.

We fight battles, some that are unknown.

We are planted in a daunting sphere

Of which most in society have no idea

So do not judge a path you do not endure

Think before you speak, listen before you act & if you have nothing good to say please remain silent.