Hard Days

Our doubts are traitors and make us lose the good we oft might win, by fearing to attempt.

William Shakespeare

I always try to write positive posts, but today is a little bit different. I made a promise to myself before I started this blog, that I would write about every single part of my journey, whether it be good or bad. So, with that being said, today I want to talk about the last couple of days, and what they’ve looked like for me. I am in a lupus flare. It’s my first flare since I ended up in the hospital with one in July of 2018, so you could say that I’ve been lucky to go so long without one. Since Thursday, I’ve been running a fever, been severely tired, and my joints hurt so bad. I’ve gotten through my days the best that I can. I worked Friday and Saturday, and celebrated my Nonna’s 90th birthday. But I did all that while feeling horrible. It’s a very hard place to be in, because I don’t want to miss out on the important things that I need to do, but I also have to listen to my body, as frustrating as that is. I’m so lucky to have an amazing doctor, I messaged her yesterday and asked for a Medrol dose pack, which is a short term steroid. She literally sent it to my pharmacy within 15 minutes, and I’m so thankful to have a doctor who listens to me, and takes what I’m saying seriously. I’m starting to slowly feel better, but it hasn’t been easy. Last night I practically cried myself to sleep because my legs hurt so bad, I literally could not even have my comforter touching them. But today I was able to get out and run a couple of errands (thank you steroids). I just want everyone to know how hard it is. I’m not looking for sympathy, it just helps to write how I’m feeling out, and to share it with everyone. I know that I don’t look sick, I have an invisible illness, and I’m grateful that people can’t see how sick I actually am, but at the same time I kind of wish they could. I wish that people could see how much pain I’m in every single day, flaring or not. When I’m in a flare, like right now, it’s obvious how swollen my joints are, how prominent my face rash is, and how run down my body looks, and I kind of don’t feel so invisible anymore. But then I go back to feeling good, and nobody will ever see how I’m feeling on the inside. I really do consider myself lucky though, I’m on an incredible medication that allows me to feel somewhat normal on a day to day basis. I’m able to work 4 jobs, and I love every single one of them. But again, working 4 jobs and going nonstop for the past month put me into a flare. So you can see how conflicted my feelings are about everything. Flaring for the past couple of days has also taken a toll on my mental health. These days, considering where my mental health was year ago, are so much better. But going into a flare makes you rethink a lot of stuff, and to be completely honest I feel really depressed. And I know that in a week I’ll feel better, it’s just really hard right now. I think that I still grieve the person that I was before I got sick. Most of the time, I don’t think about it, but when I feel bad, it’s like the wound gets ripped open again. I’m still so angry. Why did this happen to me? Sometimes, as hard as it is for me to admit, because I know that it’s not true, I wonder if I was bad person in a different life, if that’s the reason that this happened to me. I know that it’s an irrational thought, but please don’t judge me until you’ve been in my place. I truly wouldn’t wish this on my worst enemy. I feel trapped between trying to be positive and just wanting to be negative. And I think that it’s okay to have this time where I let myself be negative. Because I know that tomorrow, when I’m feeling better, I’ll pick myself up, dust myself off, and go back to living life in a positive way. I just need this time now. I’m sorry if this was a sad post, but I want to show everything. I want to be vulnerable. I consider this the ugly truth of a beautiful life. It’s raw, and it’s real, and it’s me.

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