Bad days. There are more of them than there are good when it comes to dealing with the chronic issues Cushing’s disease brings. It’s a rollercoaster of mental and physical pain, each day bringing on something new after you thought it just couldn’t possibly get any worse than it already was.
When I was going through waiting for a diagnosis of whatever was going on with me (I never knew what Cushing’s was until the day before I met my endocrinologist), and after my diagnosis while waiting for surgery, I did anything if I thought it could possibly help me. This includes eating as many whole foods as possible, going on walks when I felt OK, and exercising until I no longer could. The list goes on.
Unfortunately, nothing really worked. The physical pains worsened, sleep was nonexistent, diet didn’t matter, no skin product took my acne away, and because of it all, my mental health suffered like no other.
I brought up my hopelessness to my endocrinologist at my second appointment, and he said something I already knew but was hoping wasn’t true: “As long as you have a tumor, you won’t feel any relief until it is removed.”
All the diets I was trying to stop my stomach from growing — useless. Going back to exercise wasn’t in my future while I had the tumor (I had to stop going in July 2016 because I pulled a muscle in my back that took three months to heal!). I will be one year and two months post-operation on March 27, and I only started going back to the gym at the beginning of February 2018. Long story short, as long as we have a tumor, no matter the location (adrenal or pituitary), we are basically prisoners in our own bodies.
I know that sounds dark, but it’s the truth. Accepting this is a hard pill to swallow, but once it gets down, it makes dealing with everything a bit better, mentally.
So what did I do to help myself cope on bad days?
- Acceptance of what is happening
Easier said than done. It takes a lot of practice, but accepting that Cushing’s was/is reality made my mind feel at ease because I was no longer fighting the truth. Pretending is hard, faking is difficult. With Cushing’s, we have very limited physical and mental energy. Do yourself a giant favor and surrender trying to fight your reality away.
- Find three positive things to be grateful for throughout each day
I did this by finding one thing in the morning when I woke up, one in the middle of the day, and one before bed. It kept me grounded and reminded me that there are amazing things happening around me even when it felt like the world was crashing in on me.
Cushing’s is a disease that no one truly understands unless they go through it themselves. That causes a lot of stress and loneliness for us. Sometimes you want to vent but people can be short and impatient, thinking that we’re overreacting. That’s where journaling comes in. It’s a personal place to be raw about your experiences and emotions, and a perfect way to document your journey to help you see later just how much progress you made as a person once you’ve had surgery.
Those are the three tips I have for this week to help you cope on really bad days. You really need to focus on yourself. Next week, I’ll be helping with tips on getting through the bad days when it comes to dealing with other people. Dealing with others is a really tough one, especially when Cushing’s makes us so incredibly irrational!
See you guys next week!
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.