The dark side of NPSLE that no one understands

The dark side of NPSLE that no one understands

NPSLE is short term for Neuropsychiatric Systemic Lupus Erythematous.

People may not know how NPSLE like me suffers.

You may looked well physically, but what is going up in our minds are only known to the sufferers.

Sometimes when you are well and lively, you felt that your brain is trapped in a useless body.

It frustrates you when you can’t even finished up the whole day tasks planned ahead, as by noon, your body will slow down and joint aches will recur.

You try to push yourself to finish up the work, you may need more energy to concentrate and stay focus, but soon…work may be getting slower as you try to do things meticulously to avoid any mistakes that would usually sets in at this point.

You are also struggling to hold on and put some amount of energy to the pen you are holding, with the tired and aching fingers. At the same time, trying hard to maintain an illegible handwriting.

What I experienced in my pre-relapse stage, I would be getting sudden unexplained mood changes. I became easily emotional and cried easily over small matters or even listening to a sad song or a sad story. It brought back the bad memories or experiences I had in the past. It had been difficult to control these thoughts, no matter how hard I tried using various methods of cognitive behavioural therapy. It’s like I have tried to place a filter over it but somehow it managed to seep through in.

Sometimes it scared myself as well because the changes came so fast and suddenly. What scares me more is that will there be a time when I can’t even take total control of these anymore and loses my judgments?

What a pity….

With the current advances in medical knowledge, there is still no evidence based management for NPSLE. There is still a wide gap of knowledge that it yet to be explored.

NPSLE patients like me know that we are gradually declining and are always advice to accept it as a normal process of aging.

RIB 25^th March 2017