To Others In The Same Boat...I'm 25yrs old and have liver disease caused by Porphyria (a hereditary disease). Liver disease isn't pleasant. The jaundice and ascites turns you into an oompaloompa (willy wonka reference). Just carrying that extra weight around is a strain alone. I once had 16L drained from my abdomen in one sitting. That’s like walking around with a 16KG bag!!! Big for me, maybe small for someone else. After that there's the fatigue and nausea to battle. Fatigue comes with liver disease. There's days when I’m sick of seeing the same four walls but can't find the motivation to move. I'm too tired. Or too sick. Or there’s days when I may 'look' ok and be up doing small things, when I stop, I STOP. There's barely energy left to cook myself meals, net alone clean up too. So finding energy to keep the general house cleanliness up is non-existent. With liver disease also comes confusion. I often need to right everything down or keep things I need to remember in eyesight, otherwise the dates just blend or I forget completely. When it gets hard being stuck at home with no energy... I focus on the fact at least I’m not stuck in hospital. I'm in my own space... surrounded by my own belongings and the smells and sounds that are familiar.
Liver disease and what comes with it takes its toll, physically and emotionally. My family are of great support to me, especially my partner and mum. I have a great dog which is very much trained as a care dog. She is my small companion, who plays when I have energy and sits quietly by my side when I’m tired. She comes and lies against me when I’m sick or sad... I know she gets it. But friends wise, I am surrounded by young and healthy people living busy and active lives, who haven't had to spend time with an illness. They are there for me the best they can. Still, there's no way they can get it. That’s why I came to this site. To reach out to those who have spent time where I’ve been... I just know it's easier to keep fighting when I have people there beside me.
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MsMidnight 22-25, F 3 Responses 1 Sep 5, 2010