I think my "tired o' meter "has reach its limit ,Lately, Ive been feeling tired like 24/7,and at night I couldn't sleep .My knee problems got better since the last time I wrote, maybe because I had lost some weight with the exercises that I've been doing but aching bones ? they are here to stay.Of course I've been avoiding the sun, which is dangerous for people with Lupus, luckily my mum had changed all of my house's curtains into darker coloured ones to trap the sun rays(just for me).
I am just so tired, that sometimes even talking is hard enough , I even wants to make my sentences shorter in conversations.
The other day my mum asked me to write about Lupus and what I had gone through.I don't know at that time what good will it bring just by doing it , I find the subject rather painful to talk about .My flaws and how I regard Lupus as the ugly beast that I can't even see , but I know it lives inside me and told my immune system to go againts my body,Invisible beast that is .
But I understand now..ignorance and lack of informations sometimes cost lives.Maybe for a start Im going to write about getting treatments, Like the dilemma of patients who can't go to private specialist because its too expensive .
So far I had never paid less that RM380 on my visits to my Malaysia's private specialist just for a consultation and thats not including blood tests that I have to do on regular basis and in the UK ,which is a different story .. it doubles or triples that amount
... but then again, to see Rheumatologist in Government Hospitals , you will have to wait for ages.More than 3 years ago, I had tried to get an appointment at a Government Specialist Centre to see it's Rheumatologist, but I had to wait for 2 months!So I said 'forget it, Im dying and lets do private '.Private means own pocket money. Lupus is classified as a chronic disease, so do your own calculation!
Though I am finding it difficult and painful to talk deeper about Lupus, I think this is definitely a good start for me.I intend to start a personal campaign to let more people know about Lupus.It had killed so many lives , Lupus killed the old me , but Im back and Im going to make THIS life,better , more meaningful and more colourful than it used to be.
For now, Im off to my balcony to savour this hot chocolate , evening breeze and joie de vivre.
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I want to express my condolence to the family of those paratroopers in Langkawi.During their training exercise for LIMA (The Langkawi International Maritime and Airspace )that will be held this coming Tuesday ,suddenly the strong wind blew them off the course and out to the sea,3 of them died.
I am just so tired, that sometimes even talking is hard enough , I even wants to make my sentences shorter in conversations.
The other day my mum asked me to write about Lupus and what I had gone through.I don't know at that time what good will it bring just by doing it , I find the subject rather painful to talk about .My flaws and how I regard Lupus as the ugly beast that I can't even see , but I know it lives inside me and told my immune system to go againts my body,Invisible beast that is .
But I understand now..ignorance and lack of informations sometimes cost lives.Maybe for a start Im going to write about getting treatments, Like the dilemma of patients who can't go to private specialist because its too expensive .
So far I had never paid less that RM380 on my visits to my Malaysia's private specialist just for a consultation and thats not including blood tests that I have to do on regular basis and in the UK ,which is a different story .. it doubles or triples that amount
... but then again, to see Rheumatologist in Government Hospitals , you will have to wait for ages.More than 3 years ago, I had tried to get an appointment at a Government Specialist Centre to see it's Rheumatologist, but I had to wait for 2 months!So I said 'forget it, Im dying and lets do private '.Private means own pocket money. Lupus is classified as a chronic disease, so do your own calculation!
Though I am finding it difficult and painful to talk deeper about Lupus, I think this is definitely a good start for me.I intend to start a personal campaign to let more people know about Lupus.It had killed so many lives , Lupus killed the old me , but Im back and Im going to make THIS life,better , more meaningful and more colourful than it used to be.
For now, Im off to my balcony to savour this hot chocolate , evening breeze and joie de vivre.
-------------------------------------------------------------------------------------
I want to express my condolence to the family of those paratroopers in Langkawi.During their training exercise for LIMA (The Langkawi International Maritime and Airspace )that will be held this coming Tuesday ,suddenly the strong wind blew them off the course and out to the sea,3 of them died.
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