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

NOT AS FAMOUS AS CANCER

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 .

TO BE A GOOD FRIEND &PERSON-despite SLE?

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. 

THE SMARTPHONES BATTERY BAR THEORY

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.

Letting it all go.

TO END IT WITH A SMILE

Today marked the end of my Pre registered pharmacist day. It's a blood,tears and gruesome time for me. Well, I have sweet, mature, humility and smiles time too. It's a bittersweet moment.

We celebrated mum's birthday a bit early this year. Since my nephew and grandmum will be staying with us,so we celebrate early because after this we are focusing on their arrivals and needs. 

Bought a super awesome crepe cake from Humble Beginings. Me, super brilliant ordered by not reading the manual from their website well, it turn out ok. Hehe... 

We have family dinner at Mohd Chan's chinese restaurant. I love the atmosphere and their fish. Love the duck dish. Good. But the dim sum still not par with what we had taste before. So, it's a good food. The best thing is they don't put that much MSG, cause I know, if they did, I would have swollen lips and jittery feeling.

KEEP SWIMMING & FANCY A TEA

The truth, it's not what I expected. I would like a simple end of my prp life, stuff like send my logbooks properly or at least pass cukup2. That's my target anyway. But thanks to my utmost performance of the year, yep I thick faced send my cukup2 markah as long lulus and hope I could get my posting somewhere that is peaceful and not that gruesome.

As sucks as politic games at work can be, it did teach me something. People can be deceiving, downright cruel but nice people still exist. And you need to learn to value them and keep ur smiles and hope things get better.

It is true, to satisfy people is hard, but to satisfy Allah is the easiest.

I need to tune my spiritual compass and hope to find answers as how I could be a better person plus employee and perform better in a more suitable career. 

Ending this phase of my life is a beautiful experience. Finally, a time for myself. Which something I've been missing so much.

TO MY MOTHER, THANK YOU.

Mum, I know it pains you to see me in pain, thanks to SLE for making it hard to make choices let alone managing it. SLE has change me a lot, a chronic illness disease which let people quirks their eyes at you when you say you are tired. BECAUSE I AM TIRED ALTHOUGH I DID LOOK PUFFY THANKS TO STEROIDS, MORON! YEAH, I DON'T LOOK SICK.

WHAT DO YOU EXPECT? SEEING ME VOMIT AND PASS OUT ALL THE TIME? Oh...nice, now you look sick? PFFTTTT!!!!! HELL, it has always been ME & MY PARENTS managing the bad events, when SLE GONE WILD. Oh yeah, maybe you would love to stay with me when SLE flare and see how I VOMIT and suffering from head splitting headaches, popping every pills to let the pain, joints pain and any pain go away.

If you're not in my shoes, DON'T EVER TELL ME HOW TO LIVE MY LIFE! You work in the hospital some more, GEEZ!

Yup mum, I know, they don't know. Thank you for your advice and support for these tough time. I am thankful that you are tough and trying your best. I truly am. This time, it's my fight now. It's not gonna be pretty and bad all the time. I just wanna be thankful that I did survived and work for Allah. 

I know that I am far from perfection, and I am trying my best. I'll make sure that I be better than those people. I forgive and forget them. They are worthless to remember anyway. 

InsyaAllah this time I'm wiser and better.