Hey everyone! I apologize for the month-long wait. I was diagnosed with a new chronic illness last month and I’ve had to direct all my energy into staying afloat. So that’s what I’m choosing to write about today.
I was diagnosed with gastroparesis. Basically, my stomach is paralyzed. It doesn’t work anymore. I lost a lot of weight in a short amount of time and became malnourished despite my best efforts to eat. About once a week I’m told to go to the ER to make sure I have enough fluids in my body and to check my levels. I get iron infusions once a week at the hospital. My barf bucket is my best friend. My muscles twitch, fail and even the slightest pressure makes them feel like I’m being stabbed with a knife. I sleep for 12 hours, go to a 1 hour appointment, and need to take a 5 hour nap afterward because I’m so fatigued. This past month I’ve had to learn through trial and error what I can and can’t eat (error meaning puking my guts out all night and/ or severe pain). I’ve had to walk with a cane or a walker to make sure I don’t fall. People had to do my grocery shopping at first because I was too weak. Having gastroparesis (GP) is already a huge learning curve, and I haven’t even met with my main doctor for a treatment plan yet. For the past month, I’ve had to find ways to cope until I can actually get a treatment plan.
To say I wasn’t ready for GP is an understatement… but the more I think about it, who is ever ready for a life-changing illness? I played doctor as a kid. I used to pretend I was dying in the ER to help me lay still when I was trying to fall asleep. My mental illnesses used to be suppressed and I thought I was destined to a life in the hospital because I was so sick mentally. I would even dream of living in a psych ward. I never used to mind going into the hospital. Now I get incredibly distressed simply getting a bad of fluids in the ER. I’ve had to surrender all control to my body and I’ve never felt more sick, or more helpless. A lot of people with GP end up getting a feeding tube, either permanently or temporarily. I already can barely cope with weekly infusions. I’m terrified of whether or not I have the ability to cope with a feeding tube. Or surgeries. Or whatever else GP treatment throws at me. I’m not coping yet… I’m barely hanging on. I know that I will learn to cope. I will learn to do more than cope. I will learn to live. Just like I did with my mental health. It took years for me to effectively cope. I’ve only known I’ve had GP for a month. It’s going to take time. This article was originally titled “Coping with Chronic Illness” but halfway through I realized that this article isn’t about coping because I don’t know how to cope with this yet. But my blog is dedicated to helping the invisible become visible. This is my story. My invisible journey.