Its been a really frustrating few weeks. For a while there, I was sure I saw the light at the end of the tunnel. Getting closer and closer. I felt like I had a pretty good grasp on life and was feeling stronger. Life with liver disease is so unpredictable. And that light at the end of the tunnel, was just a train coming to run me down. The H.E. Express! Hepatic Encephalopathy is the devil.
I have been trying to write this post for weeks. But I always get angry and end up sitting here in tears wondering why me. And I don't want to do that. That's not me. The real me smiles and says "better me than you." I can't even begin to wish this on anyone, especially someone I know. I would gladly take this if it means my family is healthier than I am.
So what exactly is going on? What is life like these days? Well, its been cloudy. Slow. A bit repetitive. And very lonely. If you know me, you know my answer is always " Im fine." I used to feel like I could share the truth.
Then I let a few comments and reactions, make me feel guilty for sharing so willingly. I felt like the people I wanted to care, didn't care to hear it anymore. And people who I didn't even know, wanted to know why I was even sharing such dark things.
The shock on my diagnosis set in and everyone else lives wen't back to their normal. Except mine. I didn't get better. I was still scared. I was still sick. But I still had a life to live. Kids to love and take care of. A marriage that was cracking under the pressure. A family to hold together when I was barely holding myself together.
After a few years of this I have learned triggers for HE episodes. I hardly ever eat red meat. Still cook it and drool over it, but only allow myself a few bites. Big meals and animal protein usually set me off real quick. Lately I have been living off of (plant) protein shakes. I always have water with me. Taking my medication regularly has been a struggle but I think we got it all worked out. One makes me sick and the other cost almost as much as my mortgage. I still try to play it off. David and the boys however have learned to read me. And they are quick to tell me I am not being myself.
Remember my first HE scare? I forgot where I was and who I was with. It was the single most terrifying moment in my life. For a few minutes, I didn't even recognize my own husband. Life with H.E. isn't easy. On a good day, I never even know its there. Some days, the boys will tell me that Im "smushing" my words together. Sometimes I slur. I don't think I have even done anything inappropriate. Sleep problems...check! My hands don't flap, but they are shaky. It takes a lot of lists and alarms, but I am still able to keep up with most things. Its scary though, how bad I can get at times.
I have been carefully holding myself together for the last few weeks with the boys home. I don't want them to see me stare at a wall and cry because I can't for the life of me remember what I was doing. Its bad enough they feel like they have to check on me constantly. Disheartening isn't the right word. It kills me to feel like Im letting them down.
I have slowly been coming out of what feels like a thick fog. At times, I feel like a child. Talking myself though everything I do so that I don't forget what comes next. The other, I reached in a frying pan with my hands, more than once. Today, I feel more like myself. I was up before my alarm and took my meds on time. A few months without them had me drowning.
I put my meds on auto refill. I accept the fact that I need them. Just knowing how they are going to make me feel makes it a little harder to swallow, but feeling like I have the flu is 100 times better than what happens when I don't take them. I know that. I will be better at taking them. Making them a priority. Sometimes I just want to say forget it all and just be normal. But the thought of more blood clots and a coma get me right back on the straight and narrow.
Life goes on. This morning the boys both told me they were happy I was up and walking around. We cleaned up together and spent some time out back before they did their chores. I did take my medicine today and while my body is hurting, its the first day in a long time that my head feels clear. And its only taken me 2 weeks to get post this written.
I feel like I should have started with a warning that there is a chance this will not make any sense at all. But Im scared that If I scroll up I will get distracted and I won't push publish. It is what it is.