Navigating Life with Lupus

It is one thing to be blind, but it is an entirely different thing to live with a chronic medical condition on the side. Lupus is an auto-immune condition. It’s when one’s system gets confused who are the good guys and the bad guys, and what it does is it attacks both the good and the bad, therefore creating haywire in the system, and eventually leads to destroying any part of the body, or any system that it finds to be the weakest link. For me at that time, it was my retina.

Lupus is 20% genetic, and 80% acquired. Yes, one can have the Lupus gene, but it is the bad lifestyle that activates the illness. It is also true that it is more common for girls, and up to date, it still has no cure, it can only be managed. There are also two types. One is dermic and the other one is systemic, and the latter is what I have.

How does a typical day look like? Honestly, there is no definite picture. Some days are good, and some days are not.

I would like to start with the time when I was not yet taking the healthier path. Before, I recall waking up with terrible mood swings, accompanied by body pains, and if I am unlucky, I am already tired the moment I woke up. Joint and muscle pains were like my unwelcome twins. They used to be my constants. On top of it are swelling here and there. Edema and bloating as a side-effect of steroids when on flare. It is really a challenge to make it through each day.

When not on active Lupus flare, I must constantly be on guard. Watchful for everything. Careful not to expose myself to triggers like Sunlight, stress and everything that can make me unwell.

Looking back, I am grateful that those days were gone. Since I started walking the healthier path, though not perfect, I can really tell the difference.

I still have occasional Lupus flares here and there, but I already know my body too well. I know how to arrest it even before it does some major damage. Not every morning I am in pain, and most important, I am fully functional. I can work, can tolerate to go out and expose to some mild sunlight, and I started to gain some of my energy back.

My day usually starts early. I am up by 5 or 6 in the morning the latest. I always start my day with a prayer. Do my early morning walk, have breakfast, and then work through the day. And when I say work, I have healthy breaks in between, and I make sure to engage into something that I love, and I enjoy before my day ends. be it read articles or book if I am in the mood, watch videos, listen to music, or simply hang out with my favorite human and favorite pets.

I must admit, up to this point, not all days are good. But I’m very grateful that when I do the math, I can confidently say that days that I am better, minimal to no pains, and in a good mood outweighs the bad ones, and that I give credit to the fact that I am very conscious with what I eat, with how I live my life, and on how I take good care of myself in general. To conclude, self-love is the key.

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