Hello all. Where have I been? Hiding. This is the ugly part of the disease that is hard to share. After several months of increasingly higher doses of prednisone, I reached a breaking point these last couple weeks that had me hiding from everyone, especially myself.
The crazy crept on slowly, as did the teenage acne face, as did the tightening jeans, and misshapen moon face. My gut told me something was wrong - literally and figuratively. I hadn’t been myself for a couple weeks when a nurse at my insurance company called to check on me. I had been flagged in their system because of my ongoing (costly) intense care. After a long talk about what’s going on, she said, “How are you handling this mentally?”. A long pause, and I feigned mediocre alrightness. She had their behavioral health department call me who suggested I see a psychiatrist, they’re worried the pain is too much. After much discussion with everyone close to me, I decided it couldn’t hurt. Then it came out from under the bed: the prednisone monster.
Just admitting I had a problem let him out of the closet. I found myself sitting in the bathroom in the dark crying, refusing to come out, having no clue why I was in there. An hour later I was great - lets go out and do something! Next hour I was screaming mad. Then in my bed wrapping myself in warm blankets to calm myself down. I then remember that this is suggested for autistic and asperger’s patients when they’re having a ‘fit’. I’m losing it, my confidence shattered by the added 10 lbs and my horrible skin, all with the stress that I have to see my entire extended family soon including my soon to be inlaws.
As I calm just enough, I realize this IS all in my head! And in my veins, and my muscles, and my stomach, it’s the prednisone monster. If I can just chase him away, then I won’t need the psychiatrist or the stigma that will put in my head. I’ve greatly appreciated my time on the couch in past years, but right now I feel it could make me MORE depressed.
So just saying this outloud made me start to turn the corner. ”I am crazy, and it’s not my fault. It is the prednisone, and I can’t control it. But I can get off it.” Talking about it brought a sense of calm over me, just getting it in the open made it easier to take action over all this. I told my Rheumy I want off of it, and he agreed its time, as my new medication should kick in soon. I ordered Proactiv, on the recommendation of a new spoonie friend, and I embraced the tightness of my jeans - the fiancé loves the way they’re fitting after all.
Its important to recognize when we get in slumps due to overwhelming pain and medication, and we have to learn that though it is hard, sometimes you do need to just cry out for HELP. Cause someone will be there to listen, and if you’re not sure you have that someone, well you have me. ;)