today was a hard day, but I can honestly say yesterday was harder. Yesterday I struggled to get out of bed or to keep my eyes open. Bryan got the kids ready for school, my mom picked them up and helped until Bryan got home. A friend dropped off dinner for us. I wasn't expecting to be that exhausted on Friday. I was hoping it wouldn’t hit me that hard. I’m embarrassed to say that Bryan had to help me off the bathroom floor at one point. I was using toilet paper as a pillow because I couldn’t get up.
looking back I probably didn’t eat enough or drink enough on Friday. I’ve been trying to stay ahead of the nausea meds but when you’re so tired you can barely get out of bed it’s hard to feed yourself.
Today was better. Today I got out of bed and went outside to sit with the boys. Today I slept but I didn’t sleep the whole day. I went to my mom’s for a change of scenery. Today I ate more than I have in two days. I drank more than I have in a couple of days. Today I am not asleep by 6:30!
On the way back from my mom’s Baelor had some questions. Or statements. Either way it was hard to hear. He said that all I do is sleep and I’m always tired. I know he doesn’t mean anything. I know he’s a kid but it’s times like this that I realize my kids are seeing how this horrible disease is treating me. It’s time like this that I wish this wasn’t their new normal. It’s not fair to them. They didn’t ask for this.
And now it is Monday, and I can honestly say that I think the worst is behind me. I know what to expect. I am making changes going forward. I have decided that I can't be home alone on the friday after my treatments. Its okay to sleep the exhaustion away, but I need someone to help me. Its okay to ask for help. There are plenty of people that are willing to help me.
Is it safe to say I am scared-yup. But knowing that I did "okay" after my first treatment helps. I also know that the next couple of ones are going to be rough. I am getting a port installed, I am adding on another medication that means that I will have a couple of weeks of infusions. I know there are days that I am not going to feel like myself, but I am better to get out and walk, get off the couch, get out of bed, have a change of scenery.
I know my diagnosis is considered uncureable, but I still have a lot of fight left to fight. I have two boys, a husband, sisters, mom, friends and family that are fighting for me on my darkest days. I know that I have a lot more memories to create and to live.
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