Wednesday, November 14, 2012

BUT YOU DON'T LOOK SICK- SLE biggest misunderstanding.


When ppl said they had cancer, it's easy to picture and understand how hard the situation is. Cancer is widely known, had fatal potential and the surviving rate is unpredictable. So it is easy to explain to people how sick you can get and how the treatment affect you especially chemotherapy.

So,imagine when you explain the not-so-famous illness but also with fatal risk and unpredictable condition such as SLE to other people. It's not easy. First they look at you somekind of blur face 'WHAT ON EARTH ARE YOU TALKING ABOUT?" Then, they stared at you blankly. You are lucky enough if they kesian at you. Le sigh....

Anyway what is SLE? SLE or  systemic lupus erythematosus is a chronic illness autoimmune disease. Simpler terms- your immune system gone crazy,attack ur own body (cells, joints, blood, organ)-mostly by inflammatory response.

It's not as famous as cancer-but yeah, we have chemotherapy session, we have acute and chronic state and we have fatal risk.

I am not whiny here, but there are other not-so-famous illness such as ALD (adrenoleukodystrophy) best known is film of Lorenzo's oil, Scleroderma (the thickening of the skin) and so many millions more diseases out there, with that names you never even heard before. We are just part of these unheard but serious conditions that only people  with first-hand experience knew how hard life can be.

So yeah, not as famous as cancer .


I am finding balance in life now. Am happy to admit I am beginning to challenge myself with improvements in so many aspects. Got back from meeting a good friend I knew through internet world (Alhamdulillah-internet is the best thing ever happen) I have began slowly adapt to working life and managing SLE.

For now, I learn to chill and handling stress at workplace and not making SLE as my excuse. As ambitious as I want to be (read: my idol is Prof Dr. Muhaya or Dr Haslina Hj Siraj-which I am far  from them..sigh, oh well a girl can dream rite?) I MUST KNOW MY LIMIT.

Out of control limitation is something I learn to cope up with when life turns ugly, stress is shooting high and SLE make the flare moments. I am guilty for taking my health for granted, for pushing myself to the limit when I knew my body is fragile and for dreaming of conquering universe when I don't even own a spaceship-let alone know how to built it.

A dreamer, goal oriented, perfectionist and not-so-realistic are my weakness and strength at the same time. Despite SLE- I am just a normal person who has what other basic needs that normal people-disease free dream off.

But God always has other plans for me. He always makes thing unconventional as much as it could get for me, for I have not know any obvious reasons-that we are all His servants-bound to be test from tome to time.

And my test is my health. A life changing,bottom rocking health test. Which He believed the best- while I protest continuously-as His servant yg lemah and diuji-of course I got my weak moments-are the worst for me.

Plus with very little advertising- SLE is NOT THAT FAMOUS-makes it hard to explain to people let alone asking them to understand you.

Thus. I STOPPED SO MANY YEARS AGO-to ask or even hope for understanding. I have my own principe, THAT MY ILLNESS IS FOR ME TO UNDERSTAND, MANAGE IT PROPERLY and if the person willing to give their time and attention only-then I explain only policy.

People, I know u had ur problems too. I know that there are billions chronic illness disease out there with hard names to pronounce and much much more difficult to deal with. Thus, I respect all of your test and hardship with hopes that other people respect mine.

And yep, reality is what reality is. I am accepting that part with open heart and a bit of maturity. I am thankful I had overcome the test-surviving with all the help I could get and become a better person. 


There are spoon theory from butyoudontlooksick website. I have my own theory to explain when it come how tired I can be despite I do the normal activities other people do.

Imagine my energy bar is like the energy bar of video games with percentage or just look at your smartphones battery bars. 100 % right after charging? Well, that's my energy level after 2 days of adequate sleep (we sleep like a cat ok) and well rest. 

Then the normal activities ( we use extra energy and yep, my battery level is just like your smartphones- very fast depleted)

a. getting up in the morning,bath,pray,ready to work-97%
b. driving/travelling (affect by how far/jam or not/stress level of travel)- 90%
c. working (stress level, exert energy)- 50%
d. actual shopping/exercise/homeworks-30%
e. managing one self: bath,cleaning house,wash dishes, watching movies-20%
f. dealing with emotional situations- 10%

*by the end of the day- I have 0% energy bar and I just crawl back home to sleep.

And guess what if your smartphones gives u warn at 20% battery to re-charge, it is very easy. plug that damn thing to electric plug, there you have your source of energy. Where as us, the SLE-ians, don't have plugs, and our energy level increasing slowly but deplete rapidly-has create fatigue situation.

Some of us looks so pale, body temperature skyrocket (I selalu mandi 2-3 kali or drinks lots of water to cool down,have to control temp if not brain will fit) and experience steroids side-effects like nobody business. 

That's when I become so calculative- oh this exercise events weekends-x bole pegi la, nanti isnin nak kerja penat pulak. Ok, nak keluar lepak lepas keje-next day must cuti day baru boleh cause need rest, Overtime/extra working hours- my recharge battery level must double the extended hours so can get well rest. Aktiviti cuti-outdoors boleh blah, hanya indoors, no sunlight please, only relax activities. Jalan2 di mall, must plan pg shop mana, yg x ada kaitan-x payah masuk, so less jalan2 sgt, can relax and really enjoy shopping. (now I browse through internet to shop-thus easier). Internet banking is gift from God and internet itself is awesome.

So, yeah, I don't look sick-the biggest misunderstanding ever that I really have a strict policy on that. I don't explain to get sympathy, I explain because you are willing to listen and understand honestly. TQ.


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