My Thoughts During My Last Flare
I want to start this by saying I wrote this in March of 2020. I remember I actually had to utilize the speech-to-text function because the pain was so severe that I was trembling from head to toe. My flare lasted about two weeks and I'm doing great now! I still wanted to share this to shed a little light on the toll this disease can take on not only our physical health, but our mental health as well.
Words are hard right now. I'm trying to get them out but my vision is fogged by the tears that are welling up in my eyes. I haven't been in this place for months, and I honestly thought maybe I was a rare case. Maybe, I was actually on a fast track to remission. I'd go as far as to say things have been going so well that I honestly forgot what this was even like. I guess this is God's way of keeping me humble, or something like that.
Just a week ago I was thriving, taking my kids out, driving, going to Target and spending more money than I should... essentially living my best life. But today it took me a solid 5 minutes to get down the stairs, pausing every few steps for a break. Today I tried to make lunch for my son, but the pain of standing was so unbearable that I literally had to lay on top of the counter with my feet dangling above the floor just to relieve the pressure from my back. Today I am completely and utterly broken.
How do I explain what this is like?
I don’t know if any words can accurately depict what I’m experiencing at this very moment. Usually, when describing this pain to anyone I say, "Imagine lying on the pavement, belly down, and your next-door neighbor slowly rolls over your bottom half with their SUV. They then proceed to stop, put it in reverse, and rollover you one more time."
I think it's actually worse than that today, though. How many of you can relate? On top of that, I'm emotionally drained. I don't think there's anything more disheartening than being on the highest of highs and then all of a sudden, in what seems like an instant, you’re right back where you were months prior. The emotions I feel are so complex and are felt so deeply that I can’t function.
Positivity seems impossible
This part may seem silly to some, but I’m also struggling because I make it a point to remain positive, especially in the face of adversity. I’m careful with my words and strive to be that light for others who may be seeking comfort living with chronic illness. But now I’m finding it challenging to remain positive in the midst of all of this. I'm beginning to second guess who I even am.
It's not fair
This isn't normal, and it certainly isn't fair. It’s not only not fair for me, but it's also not fair for my family. I don't mean to sound so down, but these are the thoughts that have been replaying in my head over and over for days now. In the back of my mind, I know I will come out of this on the other side. But as the days press on and the pain persists, it's easy to fall into a pattern of negative feelings and thoughts. I'm only human.
I want to hear from you!
I want to end this by saying if you're experiencing a flare right now, my heart goes out to you. No one should have to endure this type of pain. You're not alone in the things you're feeling. We all experience it, and I know in a real-world setting it can be very lonely and isolating. If you're new here, I highly encourage you to reach out to others in our community. It makes going through these times just a tad bit more bearable. I'd also love to hear from you on how you cope during a bad flare, whether it be physically or emotionally. Please feel free to share in the comments below!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?