How to live with lupus

It Was Dreadful

It was not easy looking for another job with an existing health condition like lupus. Each time when the job interviews were successful, then came the question on medical health condition. The job requirement of passing a complete medical checkup prior to the confirmation of being employed shattered all my hopes! I remembered being offered the job by a multinational company which didn€™t mind my lupus condition subjected to the company’s medical checkup and insurance. While happily working out my probation with the company, my happiness was short-circuited. The insurance company will not cover a worker with existing SLE condition and once again the door was closed.

I was feeling so depressed and rejected and had inferiority complex. What was wrong with SLE? I thought the doctor said that it was not contagious but all doors leading to the jobs were shut. So I had to take on jobs that paid by the hours i.e. data entry, temporary secretarial and clerical assignments. I told myself that I can’t be choosy in my job assignments but I had no choice. I can’t be stressed with loads of work and overtime at the expense of my health or I would be sick again and all that I had work for, will not be sufficient to cover my medical expenses.

I lost count on the number of flare-ups that I had since I had a full time job. It was just physically too demanding and mentally stressful as my health condition had yet to be improved and stabilized.

I really regretted not educating myself on the condition at that time of my illness. My lack of knowledge and understanding prevented me from getting any better. I did not take good care of myself and I looked totally different from before, my face was puffy and big like a balloon and my eyes were so small it could hardly opened. I really looked like the moon walking here on earth. My hair was thinning and dropping by the days and I had to cut it really short. Now can you picture why I described myself as the ‘moon’! I also constantly felt the internal heat inside my body. When I placed an ice cube in my mouth, it will literally melt in a matter of seconds. I’m not kidding!

I recalled one of the episodes of my lupus flares: I was hospitalized and had to limit my water intake to just 500ml per day due to edema. Whether it is beverage, soup, gravy or juice, as long as it is liquefied, it has to be accounted for. I became delirious! Even in the air-con room, the internal heat in my body was unbearable. I asked for cold water but was given ice cubes instead to quench my thirst. I would pop an ice cube in my mouth and within a few seconds€¦gone. Whenever I asked for more, the nurse would bring a half cup of water with a cotton ball just to wet my lips. I would snatch the cup and drank all of it! I tried all sorts of excuses and ways just to get more water. I even asked the next bed patient to spare me some water. That was how crazy I became. In order to stop me from going everywhere including the toilet where I could drink from the tap, the nurses had no choice but to tie my hands to the bed.

I was humbled by that experience and felt so lousy that I had to succumb to that situation.
I yielded and became more disciplined and controlled in my water intake even after I was discharged from the hospital. Sometimes when I think back, I would burst into laughter of my madness!

With each lupus flare, my doctor would increase the dosage of prednisolone to a very high level between 45mg to 60mg depending on the seriousness of the condition so as to control the disease. I would once again be in the cycle of experiencing the side effects of the medicine. It was so disheartening! When I get impatient, I would secretly reduce the dosage of my prednisolone without the doctor’s knowledge. But my blood test results gave me away as it would show the activities of the lupus condition and my doctor would have to increase the dosage again! I realized my mistakes.