HAVING LUPUS, IS NOT A VACATION. PERIOD

“OMG, you’re at home all day, must be fun! Right? Why do you complain, I wish I had the same life as you!” This statement I have been hearing and listening to past many many years of my life from people who do NOT know me fully, and even sometimes from my friends.

So, before you assume or judge me for being home all day and you wish to do the same, should ponder on some facts before dong that.

In my heart I wish you really know that being home is NOT a vacation. It is filled with fear of not knowing, not knowing how will you wake up to, what will you wake up to. The fear of unknown. Days are filled when you can not, just can’t get out of bed, you make excuses to your friends for not meeting up, for cancelling the plans you happily scheduled a day before. You feel like you have been hit by a truck and somehow you’re still alive, the pain aches in your every bone, every muscle. Doing a simple task like getting coffee, or even washing your face is filled with pain and agony. Therefor you just stay in bed and wait it out, wait it out the feeling of being a chronic fatigue.

It is an intense grieving period. I did not know how to share with anyone, I was lost, on where to start or who would understand. I was grieving my life I had before, yes I am grateful for the life I have now, but as I write these words, my eyes are filled with tears, guess I am still grieving. The funny part having all this is, you do not even look sick, whatever sickness is happening, is happening inside your body, you’re on a war with yourself, every day.

I wish to wake up and just walk farther than from my bed to the couch. I want to work full-time without feeling ache and pain. I want to not cancel plans and come up with excuses anymore. I just want to be normal for some part of my life, where I know that my body will not be my enemy but be my friend.

Wishing something and knowing something, is very very different. I knew if I kept forcing to have a “normal” life, I would end up doing irreversible damage to my body, even more than I had done already.

I just wish people understand the sudden feeling of overwhelming sickness that overcomes me without a warning. That I will always be sick, there will be worst days but yes there will be better days, one can never know which will be which though. Wearing makeup and smiling does not mean that I am not in pain. I just wish someone to hold my hand and tell me that it Is fine to just be and to love me on my worst days rather than thinking it is my fault to be sick. I wish I had that control, I really wish.

Trust me when I say, I am fighting a good fight, the best I can, everyday, every second of my life.

But as horrible as having a chronic illness has been, it has also been even a bigger blessing for me than I could have ever imagined. It has been my blessing in disguise. I now live in the moment, do not worry about the future, life is unpredictable so why worry even in the first place?

I focus on the good in every day, whether the day is filled with pain, I am blessed to be alive and that is the bigger picture. I am surrounded by people who love and care for me. I am utterly blessed to be given a unique perspective on life. Now I know how important the little things are in life. How important is to tell people you love them, that is invaluable. Never take people, things for granted, be grateful for everything you have . I have learned that no matter how bad days get, I can and will get through them, cause I have seen the worst, I have survived the worst. So what if I can not hike, I have indulged myself into the things I loved as a child.

This journey is mine and I fully and happily embrace it, wherever it takes me, cause this new life is far better than I could have imagined.

Universe works in a funny way, it always puts us where we truly belong.

So, to all my lupus warriors, I salute you and to the people who love and care for them, we wouldn’t have done this without you.

Keep fighting, keep living, keep breathing.