Before starting this post, I must say that every Cushie is different so my experience may be totally unlike the experience of someone else living with a Cushie.
While Cushing’s has many (bad) physical symptoms I have always thought, as a bystander, that the mental aspects of the disease must be much worse to live with. Actually, I’m not sure that bystander is really the right word to use. While I wasn’t a Cushie I was probably much more than a bystander as I got drawn into their lives.
I got to where I could recognize a shift in mood almost as fast as it was happening with one of them. I learned that as I felt, literally, the change coming over them, the best thing I could do was totally ignore them unless asked a direct question. I’m pretty sure they were going into a high and it was as if the very air in the room was charged.
Another usually let me know exactly what I was doing wrong when they were in a high. And everything in the past that I’d also done wrong. It was a little harder to predict these highs. They could come on in the middle of a normal conversation. One minute you’re discussing every day events and a split second later you’re listening to a rant. A very loud rant. I finally learned that the best thing to do was to just listen and say nothing. Walking out of the room was not an option as that usually prolonged the rant.
One had definite food cravings when in a high. I could identify with that as I used to take massive amounts of prednisone for my Crohn’s. Prednisone is a steroid as is the cortisol produced by the body. Cushing’s is caused by an excess of cortisol. I was told that prednisone would give me the munchies. What I had was so far beyond the munchies. I would sometimes find myself in the kitchen late at night frying frozen meat, quite often in tears, because I felt like I might die if I didn’t get to eat. But what I found really odd was that I craved chips and salsa. I didn’t even like salsa at the time. Yet, I found myself buying and eating it. Really the chips were just a carrier for the salsa.
So when one family member started having cravings for nachos, sometimes at very odd hours, I understood. While I did understand, it was also sort of a pain as I felt compelled to go to the store and buy the chips and nacho cheese. Quite often these cravings came late at night. Ugh. Go ahead and tell me that you would of just ignored it and made them eat something else. It would mean that you had never experienced these types of cravings yourself. Also, it’s hard to ignore someone in tears because they need a certain food to eat.
Yeah, Cushing’s does a number on the mind.
One family member was pretty quiet and unless you were trying to wake them up they pretty much stayed by themselves. Waking them up was something else, something very unpleasant. It didn’t matter if they’d slept four or fourteen hours, they were never rested and so very hard to wake up.
This family member kept me on edge for months on end as they were the one that experienced hallucinations and was suicidal for a period. That’s a time I try not to think of too often, it was rough for everyone.
One seemed to want to hibernate in the basement while one wanted to be right with me at all times while the third just wanted to be out of the house as much as possible. We were such a happy family during this period. HA! It eventually seemed normal for us.
One I would quite often find sleeping under a computer desk in the morning with pillows in front of them. I never knew if the pillows were to keep them in or keep something else out. Or maybe small spaces made them feel more secure. I’ll never know.
Meal time got to be a chore. It seems that everyone expected a meal to be fixed but it should meet their cravings at the moment. Except for the nachos, cravings seemed to change frequently. And of course no one ever wanted the same thing. Meal times were such fun. Read the sarcasm there.
I did my best to keep everyone happy although I’m not sure why because I so seldom succeeded I wasn’t sure it was worth the effort. I suppose I thought that with so much wrong in their lives I should do what I could to make things better for them. Unless you’ve been in my position please don’t judge. You have no idea what you would do to try to keep peace in your home. Before Cushing’s reigned in our house I never bothered to try to keep everyone happy, that’s not how the world works. But Cushing’s messes with the mind so much that often a patient can be somewhat irrational & it’s easier to just go along and keep them happy. In their state of mind there were no lessons to be learned by ignoring their wants.
Somewhere in the years of Cushing’s I felt like I lost myself. If it didn’t pertain to Cushing’s and getting my family better I had very little interest in it. I might force myself to do a few things non-Cushie but I didn’t really enjoy it.