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2023 started out rocky. But, is this any different than the beginning of any other year within the last decade? No.
Every year with this horrible autoimmune has been nothing short of torture and I’m sick of it. I really don’t know what I did in a previous life for this to happen. I realized, recently, how often I say “I just have to deal with what’s thrown at me” or some variation of “that’s just how it is”. How many times have I said “hey, something finally goes my way” or “I have great news” in the last week? Month? Year, even? Honestly…maybe less than five times.
My disease management was non-existent so my rheumatoid arthritis flared. Being under a constant onslaught of symptoms really made me realize just how much of my life is dictated by this illness. And you know what, I hate it. I hate this disease and I hate my life. And that’s okay.
Now, don’t get me wrong. I am so grateful for so many things: I generally stay “normie” healthy, I never got COVID, I never feared for my life. I have medical insurance and I can afford it plus school, my pets and have some money left over. I am grateful I have a roof over my head and can buy food. I do have a really good life but UGH.
Why must I take 11-12 pills every morning (then another 8 in the evening)? Why is every movement dictated by the swelling. Why does pain decide how my day will shape up? And why even when I want to curl up into a ball and stop dealing do I have to live a normal life and pretend everything is ok?
When do I win at life?
I feel like I fight a losing battle every day, week, and month. My joints and bones deteriorate and I even think my brain is losing its edge. If I slide further down the slope of life, what exactly am I looking forward to? What’s the good in my life?
I eat well and feel the same as when I gorge on junk food. I exercise and harm my body. I drink water until I drown and am dehydrated. I take medication after medication and am inflammed. I fight for a third-rate life, nothing better.
The constant disability really gets to me. My brain doesn’t feel disabled so neither does my body. And then, before I know it, I push myself too hard, I’m laid up in bed, crying as I try to feed myself or get up the stairs.
What did I do to deserve this?
And this disease doesn’t dictate just my every day life. It controls EVERYTHING. It controls EVERY decision I will ever make. Where I live (can I get proper healthcare and access to my medications?), where I go to school, what I eat, what I can accomplish during the day, my work, my family, and ANY decision I might have about my future.
And, if I got to graduate school. Can I handle it? I make sacrifices every day. What more will I have to give up for the same opportunity as the average person?
It’s not like things are good when my RA is managed, either. I never seem to catch a break. I get an infection, my body turns on itself, or my organs hate me. There is always something more.
But, truthfully, the worst about any of this…I remember what it was like before the rheumatoid arthritis. I remember what it was like when I able-bodied. Damn, life was so good. I don’t think I took it for granted…I just didn’t know that I could lose it. I didn’t know that I would lose everything because my body couldn’t figure itself out.
I know it could be worse but there are still times that I just hate all of it. Why did this happen? Why me? Sometimes, I hope I die young because the idea of living like this for ten, twenty, thirty plus years just sucks. And, it’s okay for me to acknowledge this. My life is not easy-peasy-lemon-squeezy. My life is difficult and that is also okay, I guess.
Hi, my name is Monica and I have RA.