Will I Ever Go Back Into Remission?
As I’ve mentioned in previous articles, I was blessed enough to have lived 8 years in remission. During those 8 years I couldn’t even remember what it was like to live with constant pain and relive countless sleepless nights. It felt like my illness had vanished and I tried my best to take advantage of that. But I learned the hard way that sometimes, remission doesn’t last forever and a life of AS means that your relationship with your overall health is bound to change.
I’ve accepted this, but I’m also constantly wondering if I will ever get the chance to experience the beauty of remission again.
I forgot how frustrating painsomnia is
As of lately painsomnia and I have been attached at the hip. It’s quite rare for me to fall asleep anytime before 1-2AM after spending hours tossing and turning. The last year and a half I’ve had to stop sleeping in the same bed as my fiancé, and he has spent almost the majority of the time sleeping on the couch next to me because every night my body is asking something different of me.
My pain in my back is either so bad that I need the softness of the couch cushions, or my hips and legs are in so much pain that I need to get up and sleep in the bed alone because I need to spread out like a starfish. I fight this battle every night. It feels like I can never win.
I’m back on my medication, but it’s not working the same
I was off of Humira for about a year because of an infection, and it was the wonderful drug that put me in remission. But over the course of that year, something in my body changed and now my medication isn’t reacting the same way to my body. I take Humira every other week, and for 8 years that did the trick.
Now I’m on the same dose and it seems as though my immune system just doesn’t want to cooperate. It’s unexplainable the feeling of your body letting you down, even when you know it’s not your fault. I’m terrified that Humira may never work for me again and that the 8 years I had of remission is the only chance I will have at any stability in my health.
I’ll continue to hold hope for better days
As time passes by I realize just how little control I have over this disease. However, the one thing I do have control over is mindset towards living with it. Bad days will come and go, and there will always be periods in my life where I’ll feel like giving up—like I’ll never reach that state of stability ever again—but when those moments pass and I feel like myself again, I’ll keep holding out for hope like I always do.
That’s all we really can do while living with a lifelong illness. Hope is the glue that keeps us together, and keeps us fighting for a better life. Because life is possible with this disease—remission or not.
How long was your longest flare?