If someone told you, right now, you could no longer be the person you were yesterday, live the life you lived before this moment – what would you say back to them? How would you feel? For me, the word “lost” immediately comes to mind, and lost is exactly where I am in this moment of my life. The best way I can describe it is floating through the universe, directionless, waiting for something, but I’m not even sure what that something is.
I am 2 years out from my official lupus diagnosis, and about 6 years out from when my health began to fail, and I have FINALLY stopped fighting the notion that I am in complete control of my life! I have stopped telling myself that I can, both, treat my disease and carry on with the way I lived my life before getting sick. It’s a scary thought to sit with, for me at least. Before I started having health issues I was flying through life at about 100mph, working full-time while going to school full-time, and still making time for friends and making frequent trips to visit family in the next state over. I have always been a very driven person and whatever I set my mind to, I was going to accomplish – come hell or high water. I had my plan (and I was killing it, FYI) and a vision for my life, and then I hit this huge road block – chronic illness – but I was determined not to let it stop it. There have been many days of crying fits in my car because my body just wouldn’t cooperate and function the way I needed it to, many mornings dragging myself from the bed when I knew I should be resting, and then many trips to the hospital because I wasn’t listening to my body and pushing myself too hard. But I was bound and determined to not let this stupid, nuisance of a disease get in my way!
In my head, these things that I was working so hard at defined me; what would I be without them? So you can imagine, that coming to the realization that I just can’t keep going the way that I have been, even toying with the idea of changing your whole life around, is both terrifying and completely devastating. But the thing that I have come to realize is that those things were going to fall away whether I accepted it or not, whether I went willingly or kicking and screaming. The fact that I’ve been holding on to these pieces of my life that I thought defined me for this long is more of a testament to my stubbornness than anything. It took a while, but I get it now. Life will never be the same…I will never be the same! I can’t compare life after lupus to life before, it will never match up. I can’t make those kinds of comparisons because I’m not that person anymore, I don’t have that life. The best I can do right now is take life day by day, focus on my health and let the rest fall into place. My hope for this blog is to be both cathartic for me and to help others out there going through the same thing.
Change is coming, I can feel it in my bones. I am letting go of what was and holding space for what is and what is to come.
A Lovely Lupus Life 
I really enjoyed reading your post! This was so well written! I started my blog about almost 2 months ago and it has been a fantastic experience. I have battled Multiple Sclerosis for 16 years and it has come with a lot of pain. But I try to remain positive and not let it control me. I look forward to more of your posts! Take care!!!
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Thank you so much for your kind words! My thoughts and prayers are with you. I know it can be tough to stay positive some days, especially after 16 years battling, I’m sure!
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Oh it is but all I can do is continue moving forward and hope for the best! I remember when I was first diagnosed, I was so negative. That didn’t help me to accept the diagnosis. In my mind back then, I was going to go from being diagnosed, to walking with a cane, then to a wheelchair and then death. Well 16 years later, through maintaining a positive outlook, I still walk on my own and even snowboard in the winter time. Now granted, I have to take more breaks than others, but I push myself still! I will be honest with you, I push myself too hard sometimes because I just want to be normal. But then I pay the price later. I am learning to take it easier on myself!
Thank you so much for your comment. I have set myself a goal that I will keep, because I am stubborn as they come. I want to do one post everyday for at least one month! I hope you enjoy if you choose to follow! Take care and thank you again for your kind words!
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