8 ~ The call @ 4:15 am ~

(Abdullah’s operation is postponed to early January next year.. His surgeon is a wonderful Dr of a kind. In today’s world where it’s very hard to find good drs that deal with rare cases, we need to give due recognition to those who excell in their field & take proper care of patients.

Dr Grieve says there has been a couple of minor operation cases that came in but due to the seriousness & delicate nature of Abdullahs he does not wish to go ahead as it requires full concentration.. Also he he will not risk handing it over to someone else, it is his personal responsibility)


[ VOICING ON BEHALF OF MANY ]

Unfortunately a lot of people suffer in silence, loneliness, isolation, misunderstanding & judgements when dealing with an illness of a long term nature.. I am not generalizing because there are caregivers who go all out to learn & provide support!

In my case I cannot express enough gratitude for being blessed with a wonderful support system… May the Almighty bless my parents who take care of me tirelessly day & night as well as all those who support me through various ways.

However there are many cases I come across where loved ones do not seek / care to understand what is truly happening to a family member who has a chronic illness – the physical & emotional effect.. It is a sad & heart breaking reality where people are made to feel it’s their fault that they’re ill or “just get over & deal with it”

Whereas a kind hand always goes a long way. Care rendered to an ill person, be it young or old will never go wasted & the heartfelt prayers recieved in return never go unanswered!

People with chronic illnesses do not demand big things because any “little” thing is considered big in our eyes, lol it’s easy to make us happy ๐Ÿ˜Š

A helping hand, a few encouraging words uttered here & there, benefits both the doer & reciever.

Don’t stop planting seeds of kindness

The benefits which bloom therefrom are endless

______________________________________

I am very choosy who I tell about my challenges..

I can also sense people who show a keen interest in wanting to know how I’m feeling, or people who ask “by the way” for the sake of it.

Sometimes I do not tell those who care about me, everything that is going on because it hurts more to see the look of pain on their faces when hearing something worrying. So only until I’m compelled, by the last resort. Else it’s a thing of “fight it & get through.. What they don’t know won’t hurt”

The thought of creating a blog came to mind many a time but was pushed aside until I reached a breaking point of frustration with medical personnel.. An unfortunate reality of what most of us go through ๐Ÿ˜”

Medical personnel who convey the message that LIFE means absolutely nothing, they run a business, & do not care to go beyond in trying to help a patient in digging deeper than the basics to understand why are they experiencing such & such symptoms..

It’s a matter of “we don’t know what’s wrong, there’s nothing we can do for you”

“It’s all in your mind” that we actually begin to doubt our pain existing even though we know deep down how real it is..

“She’s a psycho – seeking attention” As if I never got enough being the last born of 6 siblings ( born after 8 years )๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ – more regarding this aspect will be elaborated at a later stage.

“She’s self diagnosing”

“Test results are normal, I don’t see anything wrong” whereas recently I came to understand how many tests of mine were ticked off & considered “normal” when they are actually not!

When I reached the last of Drs up to date who told me the worst of all I heard in the past 19 months I decided enough is enough! I am now going to speak out loudly with the hope my messages reach far & wide…

Contemplating what would be my first step in advocating all the harshness we undergo in search for diagnosis & better treatments, a dear friend & sister (all in one special lady ๐Ÿ˜‰) pursuaded me to go ahead with the blog.

I do not wish to put my life on show & display for all but the reason I voice these important matters is because people are afraid to speak out due to the misunderstanding that comes forth.

Example: Even in a drs room where we have a right to ask questions, clear confusion & understand things better, we are met with irritated expressions & false judgements – not having a say as to what’s going in our own bodies.

Dearest fellow warriors who feel uncared / isolated.. These are the words I wish to share with you:

______________________________________

[ Back onto the progression of symptoms ]

Insomnia / painsomnia, hands, arms, feet & leg pain continued…

Another symptom which began “in winter” was excessive sweating & upper night body sweats.

That was the first indicator towards Dysautonomia & my body’s thermostat beginning to malfunction.

My body no longer has the ability to regulate it’s temperature.. Its either of 2 extremes & does not work according to weather patterns or seasons.

If there’s a slightly cool lovely summer breeze I shiver & need to don a jacket. If little warmth comes in I feel over heated even though it’s not.

During that period of mid winter my PJs would become drenched with sweat. I’d throw off all blankets whereas everyone else around me would be feeling cold, wrapped in warm thick clothing & huddling around a heater / fireplace…

The day would fly by quickly because I had lots of visitors..

The night would pass with the clock seeming to tick slower.. You lay only waiting for it to end

Until 1 night..

After spending most of the time awake, I dozed off into a deep sleep for 35 minutes but awoke with a sudden shrill of the landline @ 4:15 am….

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