Living with lupus

As you can see now i am quite free to update my blog haha :p Well when i am busy i will be really busy but when i am free i have a lot of room to breathe. That is the nature of my work, i guess. I could not tolerate a busy all year round work environment anyway expecially with SLE.

(I use lupus and SLE interchangeably, i hope you will not get confused. Its the same basically just that SLE is more specific.)

From my last update, lupus can cause rashes, joint pain, fatigue quite commonly. For me, apart from the puffyness of the face i have incredibly excessive fatigue to manage. It can be really horrible at times. I also experience terrible mood swings and can get really snappy and out of mind sometimes. And brain fog just made me look like i am not paying attention to what i do especially at work. Managing fatigue can be tough especially in the morning when you are rushing to go to work. Sometimes i could not move  like normal i became a bit slow so i started to arrive late at work. Now i am better so i try to wake up a lil bit early so i can take more time to get ready in the morning. And not to mention that i always try to sleep early since i want to wake up early.

I also try to exercise daily by going to the gym for pilates, dancing and hi-lo class and using those cardio machines. Having SLE and going on steroid adds on the weight problem. I get sort of fluid retention and expanding girth of which i did not have before. Hence, i can never skip exercise. It could just be light cardio if i dont have the energy that day but i still have to exercise. It will definitely help with the fatigue, weight control and build the bones.

After all that, i need to stay calm everyday. I mean i try to stay calm and i am definitely not the calmest person in the world haha :p But i have to relax everyday and keep the stress level low. Stress can trigger flare ups and also worsens my mood swing and sometimes pyschosis. Steroid only adds to it so yes i am like a ticking time bomb most of the time.

Eating healthily is the key for lupus and weight management. Basically i have to watch what i eat i cant simply gorge everything. Ideally, i have to keep consuming calories under 1500 kal a day. No fried or processed food if possible. Eat more fruits, protein and calcium rich diet. You see, steroid can cause brittle bones and osteoperosis. Calcium is really important in my diet currently to avoid any bone injuries. I take calcium pills, vitamin E, fish oil and vitamin C on a daily basis. I also tak habbatus sawda ( black sesame seed) daily as a supplement and I try to eat 4 types of fruits everyday.

One more problem for lupus sufferer is sunlight. Exposure UVA and UVB can cause rashes and systemic flare ups when the disease is in its active state. I have to avoid sunlight particularly between 10 am to 3pm because UV is at its peak. I have to wear sunblock daily (which has been a habit to me anyway), sunglasses and umbrella if i have to walk outside. I also have to stay in the shades most of the time. So no island trips for me this year :( A huge sacrifice for an island person like me who needs the island getaway to stay sane! :(

However, i have got a letter from doctor to tint my car darker than what JPJ is allowing to limit my exposure to sun while driving.

Another problem that i have currently is horrible gastric. My acid reflux was really bad last month but now it is more tolerable. I have consumed bottles of gaviscon and on pariet since i am on steroid. Steroid does not help with gastric it only worsens it. Some days my stomach can get very acidic but some days its just normal.

Apart from gastric is a steroid induced imsonia. I am having a terrible time falling asleep even though i feel very tired. Thats why i try to go to bed early so i can read magazines or books to relax and eventually fall asleep.

One more thing, as i have Sjogren as well, i have dry skin, dry mouth and dry eyes. So far i have had dry skin since like forever so i am really discipline in terms of slathering body oils and creams after shower so its all good. Dry mouth entails more care to use tongue cleaner and to not forget to brush the teeth twice daily to prevent dental decay. People with dry mouth has a higher risk of having dental decay because of not having enough saliva to wash the mouth from bacteria. For dry eyes, i avoid air cond air drafts and wear sunglasses when i am out. My face and eyes will ache terribly when i cry so i try not to get emotional even though it can be really tough. When my face is puffy, you can see its like 'sembab' like that.

As you can see my life has become regimented with this disease. I have to eat properly, sleep properly, rest properly and exercise properly. I can never not do any of these in a day if not i feel horrible. Regimented life is not fun sometimes. I have no room to navigate when i feel tired. I cannot be too active or i will end up more tired. I cannot stay up late because i will get tired the next day. And when fatigue kicks in i just feel tired at any point in time. When i feel tired i have to sleep and cannot force myself to go out just to accomodate people.

Being on steroid also makes me vulnerable to infections. I cannot be near sick people because i can get easily infected and if i get infected it could  be fatal so i have to get treatment immediately! Not to mention that the doctor must monitor my kidney function every now and then to detect any kidney failure early so i will not have a shorter life span haha :p


So there you go. Lupus affects the quality of life so it is just managing it to get through it.