14 ~ All are not the same ~

“Go India..

Go to the all time famous Ayurvedic clinic..

Go to the UK..

Go there..

Come here”

Everyone’s suggestions are truly appreciated greatly!!

However, since July (2017), when the reality of my heart issues came to the fore, drs strictly instructed me not to travel anywhere abroad due to the complications involved. It’s a variety of conditions interlinked that make flying too risky.

Oxygen is not an issue because the portable oxygen machine I use is allowed on board. This oxygen machine is a means of supporting my life out of home.. It is 1 of THEEE greatest blessings providing freedom.

Gratitude is also expressed to the people who gifted it to me; grandad, dad, uncle (dad’s only brother) & my brothers.

Thank you to RDSA’s online shop for making this cover easily accessible for us in the event of an emergency situation. It’s actually a seatbelt cover for patients who drive but for me it’s safer to keep it on the sling.

Not forgetting I have an immune system that’s barely functional & unable to fight off other invaders that may seem little or do no harm to others. Airborne infections etc at this point in time are a total no go!

I will digress regarding this at a later stage. Touched on it now briefly to answer the question – why am I not going abroad in search for better treatments options?

[ SEPTEMBER 2016 ]

A friend of mom who has Multiple Sclerosis, goes to that Ayurvedic clinic in India (cannot recall the exact name but I’m sure most know which one is being referred to)

It so happened, the main Dr in charge of that entire clinic came down to SA 🇿🇦 & stayed at her home for a couple of days / weeks.

Her husband then told dad to bring me for an opinion.. Dad inquired if I’m willing to go. And I readily agreed.

No harm right?

Sometimes we feel a natural nervousness wondering what is the dr going to say, that we forget to mention important matters.

So like other warriors with a journal of symptoms. We have to keep proper track records & carry them to every new drs appointment. It makes it easier for us & makes it easier for the dr as well. Everything is written down from the beginning upto the particular date in time…

Those who give patients full attention, read it seriously & question accordingly, adding further notes. Through all my experiences, I’m able to gauge the goodness of dr from his / hers first reaction of being handed my track record.

Here we go 🚗👣

Dr first consults with me. Greatly taken aback with all I had written down. It seemed that in his however many years of experience as a dr, it’s the first time he is reading a case of such nature. I figured he did not know heads / tails of what’s going on!

Unable to ask much questions.. he told me i suggest you come over & we will put you under a team of “psychiatrists & psychologists”

“What were you doing prior to falling ill?”

“What are your dreams?”

“Where would you like to see yourself in the future?”

He inquired.

Astounded with my replies probably expecting to receive the opposite of all I said, he told me to go out.

Then called mom & dad in.

“This 👉 *pointing to my track record* does not make sense. She is probably experiencing it due to stress. If her stress lessens then she’ll be fine”

“How is her behaviour at home?”

Mom & dad explained everything..

Realised that as much as he’s trying to make things fit the way he wishes, it ain’t working. Finally had to admit saying: “I’m really surprised with the manner & order in which she has described her symptoms.. Will have to take these notes back to my team to do in depth research”

A “modest” way of not being able to say I do not understand 😅

No dr will simply admit straight “I do not know”. Their lack of knowledge always makes it a psych problem on the patients side.

However, there was 1 dr who said: “I do not understand but will call you to consult with a Neurologist from Cape Town who’s opinion I hold in high esteem.

The ONLY dr who said:

Even though I do not understand, I will not leave you hanging in mid air. You reached out to me for help & I cannot provide proper help.. God forbid, it should not be, something serious happens one day.. I will be held responsible by the Almighty for dismissing a patient due to MY lack of knowledge.

– Professor Moosa Patel

A dr who kept true to his word.

One from whom sincerity pours forth in torrents.

In the end, it was a great lesson!

Never jump to every place suggested. Do proper homework. No denying the fact that this clinic is good but imagine me going down all the way on that basis, to have him come to a psychic conclusion.

Being good does not mean they specialize in every medical department. When I read through the booklet he gave, I realised their focus is on certain types of diseases. If a condition like mine’s is not recognised, how can it be treated?

It is very important to bare in mind; When considering a country abroad for research & treatment on a rare case.. First send a track record of symptoms & results of tests that may be possible to send through.. Await for a response from drs to see if they can really help or not, then decide on the next step.

I was saved 😁😁

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[ At that point in time progression affected the following ]

– Bladder causing it to weaken.. fills up frequently & cannot contain long.

– Sensitivity of my skin causes a shocking reaction that sends off flying sparks wearing clothing that is not 100% pure cotton. If the cotton is mixed it will still spark.

Summer is fine because most clothing is cool & 100% cotton is easily available.

Winter is a slight challenge, having a cupboard full of all types of warm clothing in fabric such as acrylic, polyester, wool etc… But unable to wear none of it.

Wearing one cotton poloneck or inner is less warmer than wearing one woolen or knitted one so requires wearing more. Finding thick cotton outer clothing is not that easy…

Searching for a warm cotton jacket had me “touring” malls upon malls. The most famous clothing stores, branded name shops had nothing.. Eventually i found 1 ladies jacket at Cape Union Mart, 1 at Macro & a man’s hoodie from CUM because all female ones had mixed fabrics & I got tired of parading malls lol.

Only mentioning places because if there is anyone in SA with a similar skin sensitivity, time can be saved when purchasing.

Even though i can no longer wear any type of clothing, im grateful for being blessed with clothing. There are millions living in dire situations where basic necessities like bread is something to dream of!!

If readers know of other stores, please comment. It will be much appreciated.

– Palpitations.. That occured not only with movement but rest as well. Both totally new. Feel my heart going bang bang, doof doof as if it’s playing some sort of drumming tune 😂

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[ NOVEMBER 2016 ]

Stepped on to my first flight since diagnosed for a holiday to the ocean side (Durban)

A first holiday understanding my body’s limitations

A holiday that required a very strong mind to focus on all the positives & push out the negatives

(Added info for international followers: Durban is a 1 hour flight, travelling by car takes approximately 6 hours)

I flew many times in the past & had absolutely no issues. Flying unaware of my first heart problem that became symptometic made me reconsider the excitement.

Due to heavy downpours of rain the flight was delayed a few hours, sitting very long on the airport seats ain’t too easy on a sensitive body.

Finally boarded, after sitting a long while.. the captain announces: “Kindly bare with us, there is a fault in a part of the engine which we’re trying to replace. Apologies for the inconvenience caused”.

Took off into rain that caused lots of turbulence making my entire body shock from head to toe until landing.

I experienced my first claustrophobic feeling. Wondering what on earth is happening? This is not me? I took off my hijaab thinking it might stop. No! Only the slightest difference.

Thinking I will rest well after the flight & then enjoy.

Nerves: hahaha I like that joke too.

Durbans humidity caused a major flare. I felt the real version of a body twisted with barbed wires all round.. A body stuck in the middle of a thorny, poky bush. No escape.

The claustrophobic feeling intensified.. I stayed in a large bedroom but would feel as if I am not getting enough air. Open all the windows fully yet at times that was also not enough.

– Dizziness not confined to postural changes…

Apart from these newly manifested symptoms. It gave time to ponder on the beauty of everything else we usually miss amid our hectic hustle bustle of day to day life.. This time though, everything had different meanings attached besides admiring

Between the alternation of day & night are signs placed for reflection…

Like the waves. One atop another.. Sometimes they’re high, other times they’re low..

Life with chronic illness has calm, low waves, (2016 for me)

Then there are times where the waves come with full force crashing roughly (2017 for me)

Watching the clouds float through the sky teaches; life has to continue no matter what.

Being diagnosed with multiple chronic illnesses changes everything but does not mean life comes to an end. We have to slip, fall & stumble but should not leave ourselves in the rut. Move ahead always… Each at their own pace. Fast or slow does not matter.

The Beauty of sunrise symbolizes our rebirth

A reminder that after each dark (difficult) stage in life, light (ease) is promised to come

Sunset indicates there is also beauty found within each stage of life be it light or darkness. When the sun disappears, it is only in darkness we admire the glowing moon 🌒 & shimmering display of stars 🌟

Beauty is found everywhere. At times it only requires a bit of extra searching.

King Shaka airport decorated for christmas – flight back home, somewhat easier.

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[ 21st DECEMBER 2016 ]

Past midnight while in a deep sleep it awoke me with fright….

Oh my lord! What’s happening? Am I dying? Nooo, please spare me. How do I dial medics?? I need to live..