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.
I’d say it’s still an article about coping, if you look at it from the perspective of coping as a learning process rather than an endpoint.
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Thank you. I appreciate that.
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You have put my thoughts into words. I relate so much to this post. It’s a debilitating illness but you seem like a trooper. Well done to you for trying and wish you nothing but ease and positivity.
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