I am not a morning person yet here I am, on a Saturday morning at 6am, watching the sun come up on a foggy morning in our sleepy little town. I've been up since about 4am, but stayed in bed, hoping to fall back asleep. I gave up.
I haven't talked much about what's going on because it's just easier not to. When you have a chronic illness, it's just easier to put on a smile, act happy and say you're fine. People might say they do but no one REALLY wants to hear about all the crap you've got going on. It's so SO much easier to pretend it's all good. The how are you question is so much easier to answer with "I'm fine."
Besides, I don't want to be that person anyway. I don't want that look people give you... anyone with an illness knows that look. They I feel so sorry for you look. That uncomfortable I don't know what to say look. But at the same time, not talking, acting fine... it's EXTREMELY lonely. Because, if everyone thinks you're fine then really, you have no one to talk to.
2013-14 was so hard and I didn't handle it well. I alienated people, the friends I did have I almost lost and/or pushed away. I am trying to exact opposite approach this time from last time something major was going on and it doesn't seem to be working well either. Both my ways of coping leave me feeling completely alone. While I am sure I could talk to my friends about this, I guess right now anyway, I don't really want to (and yet I do want to at the same time). I don't want to be that friend again.
Regardless I do feel like people are keeping their distance. Whether it's because they don't know what to say or act or just... I don't know... don't want to deal with me at the moment. Hell, I don't want to deal with me. I need the normalcy of those relationships though. But perhaps, it's not them it's me. I have been quiet as well. I have been keeping my distance as well because I don't want to be that person again. I'm afraid that I'll be a downer and who wants that? No one wants to be around me when I am upset, sad, angry, annoying.
Right now my illness isn't getting better. Not only is my Crohn's severe, it's aggressive. It's flared up, drugs are not working and the doctors seem to be at a complete loss. It's become "extremely concerning." It's scary. Very scary. You can live without a large intestine but you need your small. I'm scared of what will happen if this doesn't come under control.
That's the first time I've written that and I have not said it out loud yet.
I've been throwing myself into my kids lives more than ever right now. Creating memories with them and making sure they have a wonderful summer. It's hard on me because it wears me out. Fatigue sucks. But, they seem to be enjoying all the fun things we've been doing. Creating forts out of boxes, going swimming, checking out the ever so cheesy - straight out of the 70's - Dinosaur Land. But I think too, it's hard for them. Not the fun activities but the fact that mom can, in an instant go, from fun, happy mom to "I don't feel good and I am dead tired" mom. And that second mom, she's grouchy. She yells. She has like zero patience. And then she feels like a crappy mom because maybe she's yelled at the 3 year old for doing something 3 year old's just do because they're 3.
My husband has yet again been patient, understanding and just there for me. I talk to him but at the same time don't want to worry him too much. Plus he has the tendency to do what most men do. He tries to "fix the problem" when really all I need is someone to listen.
I just keep plugging on. It has to get better because it just has to, the alternative is not gonna work for me. I'll just keep putting on that happy face, act like all is well and answer with "I'm fine."