Monday, October 10, 2016

... but you look good!

Things post AFE (amniotic fluid embolism) are really hard. I'm discovering that there aren't a lot of resources out there to help me and even the doctors and counselor aren't really sure what to do for me. Beyond reiterating how lucky I am to be alive and I should just remember that every time I feel really bad.

Which yeah. I'm lucky. I know that. I know that every day and knowing that I was that close to dying is terrifying. I really can't explain to you what it feels like if you don't know what it's like to know that the only reason you are alive is because someone paid attention to a small segment in a conference about a "combination of drugs that might work but you don't need to really remember because the likelihood of you ever encountering this in your career is slim to none". My anesthesiologist paid attention and remembered and saved my life.


I'm going through a whirl of emotions right now. Most days I feel just blah. I'm not happy, I'm not anything, really. I'm faking my way through the day. I guess it's a good thing I have Penelope and Lucy with me all day because they are the only reason I even bother getting out of the bed every day. Olivia and Jackson are pretty self-sufficient so they don't need me to be on them all of the time. Which I suppose isn't good for them either because they need their mom and I just... I can't. I really don't have it in me to do it anymore.

It also makes me feel like the worst person in the world because I've started avoiding people. I make plans and I feel like, at that moment, it's going to be good to get out of the house. And then it comes and the thought of seeing people, talking to people, and dealing with the awkward encounters with people is just too much. Because it's come down to people not knowing what to say to me, but feeling like they should say something to not be rude, so they ask the general, "How are you doing?" and we both know you don't really want to know. So depending on the day, I'll either say, "I'm hanging in there" or some days I'll say, "shitty, but.. that's just how it's going to be" with a smile on my face because I feel like I need to smile to not scare people. Because if you really knew how I felt, you'd be scared. And I'd probably be committed. But no matter how I reply, it's always followed with the generic, "Well you look really good!" and I want to ask- how did you think I was going to look? Because I now know what it's like to have an invisible illness and it really sucks.

I had an intake appointment with a mental health counselor on Friday and my first actual appointment isn't until November. I googled the counselor I was given and she's so young. Like, fresh out of college and I realize I'm at that weird age where I don't want to listen to what someone younger than me has to say. Because what can this chick possibly tell me about what I'm dealing with? Can someone with no actual life experience tell me anything? I don't know. I'll go because I need to do something but I'm not even optimistic about it anyways.

Then there's the questionnaire. They give you four pages of yes/no questions and honestly, yes or no is very limiting. What do you do if yes feels too scary to say, but no would be lying? I'm a kinda. They obviously ask if you're suicidal and I'm not, I don't actually want to do something that would end my life but some days I feel ambivalent to being alive. Like if I happened to get hit by a bus, I'd be maybe OK with it. Because I came back from the dead for this. I hurt all of the time, I can't remember shit, nobody has answers, nobody can tell me if I'm going to get any better than this, I don't want to get out of bed, I don't want to parent anymore, I don't want to leave my house but I'm also sick of being here. I can't say my depression has ever been this bad but I'm officially in a dark hole and it's not even scary. Maybe that is what scares me, I don't even care I'm in the damn hole. I'm just hanging out and faking it for everyone else.


thotlady said...

I don't say this lightly...I know how you feel concerning the depression. But add to that taking care of two infants. That adds another layer to the depression.

Ruth said...

Chronic illness sucks! Not only do you physically feel like crap a lot, but you get to feel a loss of who you used to be. If you haven't done so, I suggest joining a support group and talk and read or listen. I have learned more from other people with AS then my rheumatologist. Just knowing you are not the only one helps a lot. Most people are never going to understand because they aren't living it.
You've gone through a lot. It changes you.

Julie H said...

It sounds so horrible :( I know what you mean about talking to someone younger. I feel that way all the time.