Sunday, November 3, 2013

Welcome to our alternate reality

I was officially diagnosed September 2012 with Auto Immune Hepatitis - AIH. It's where your immune system is just so damn kick ass it decides to attack itself, and in this instance - your liver. Unfortunately, your liver doesn't do well fighting back and becomes enlarged and scarred, and in some cases, you need a transplant. I am lucky enough to not need a transplant - or not at this point, anyway. I have severe scarring, but a 17 week course of corticosteroids doubled with an immuno suppressant has helped things get in check. I am not a typical case. I had it for years before I became jaundice, fatigue being my only symptom. Fatigue I put off from doing shift work, not being 20 anymore, a stressful job, and finally, being pregnant. I think my hormones kicked it into high gear, since it is often diagnosed in women around my age. I spent a week in hospital after some complications from a test, and was diagnosed officially about a month and a half later(?), after a liver biopsy. Now, I experience stifling fatigue, very occasional stomach pain, muscle fatigue - stairs and holding something out like looking at a shirt shopping, are difficult. It varies day to day. My feet used to hurt in different places every day when I walked, but now only the right foot hurts on the outside edge. Muscle cramps are also part of it, and it varies from time to time. Last night, I had a back muscle cramp. Often though I feel like my legs are growing - they have a strange ache about them. Not a cup of tea, but because I look fine, people don't see me as sick. I don't mind not being seen as sick when I'm out, I don't want to be pitied. But people sometimes look at me strangely when I walk slow, get confused or forget things (another issue that's recently cropped up), or press the handicap button so I don't have to pull open a heavy door. I never know how much energy I'll have on any given day. Let me introduce you to something golden: Spoon Theory

No comments: