I’m honestly not sure how much more of this self-indulging melancholy I can take and if I’m sick of it, boy can I imagine you guys are too yes?
It seems though, for all my want to be happy, and the apparent gift I have for faking it so very, very well it has not infiltrated my emotions enough to make it so on a real level. (eeesh, that’s dark. Bring it on sadness, bring it on.)
So you guys know I’m super pissed about this glass of water I am forever attached to, and as I continue to let providers poke at me and test me I feel the glass becoming heavier.
Man, do I hate that glass right now.
Since I’m trying out this new “tell people what’s going on” thing with this last round of tests and surgery I have been telling some friends about my results first hand, while sharing other things on my Facebook page. Of course, I am also trying to let The Hubs in a little bit more on what is going through my mind.
We have always had this sort of ying and yang about our relationship when it comes to things happening. He is very much so Mr. EasyGoing where as I am Mrs. WEAREGOINGTODIE! Which is a good balance because I worry enough for both of us, and he brings me back down to earth when I get out of control.
There are times though, when his easy going nature comes across as indifference or worse, as if he doesn’t care. Sometimes that’s okay, I mean everyone has their boundaries when it comes to what should get their energies and what falls to the side. But when it comes to myself and all of the medical baggage I carry it is exhausting to be the only one who actively cares.
Today while getting ready for life I opened up to him about my anxieties regarding these tests, the newest diagnoses, my follow up tomorrow morning etc. As I was expressing these thoughts to him he said “Man, I would go nuts with all of that in my head all of the time.” Yes! I thought, He gets it a little bit! He is empathizing with my situation. Out loud I said “welcome to my brain 24/7.”
A few moments later as I was sitting down to do some makeup he said “I wish I could give you some of my nonchalant-ness so you could be less stressed about these things.”
A few things happened here at that moment:
- My heart literally broke in half because I realized he will never get it. Never. The fact that he finds being nonchalant about all of this on his side of the table appropriate is hurtful enough.
- The fact that he thought I should be nonchalant about all of these things going wrong inside my own body was devastating. If he had any clue how hard this actually is, what living in 24/7 pain was actually like he would not think being so laid back about it was appropriate.
- I have got to stop hiding it so well from him. He has no fucking clue how hard this is, and I am enabling his interpretation that this is a breeze.
For a few moments I tried to explain to him that I actually find it really upsetting that he doesn’t get more worried about this. I mean, if it was him that was walking this nightmare of a road I would be right there next to him. Glued to his side. I would know all of his meds, what they’re for and how often he takes them. I would know the name of every single condition he’s been diagnosed with and each and every procedure he’s had.
Now, I know that to some extent it really has to be me that takes care of these things because it’s my body and I am the one being poked and what not but still, he could show up right? I mean, he could at least stand next to me while I go through the repeat process of someone pushing and poking on my insides.
Instead, 98% of the time it’s just me doing these things. I’m the one doing the research, filling out forms, making appointments and getting poked at. I understand he can’t be my body double and sit in while they do pelvic exam number 10.342 (man, wouldn’t that just be dandy though?!?) but it would be so, so nice, to have him sitting in that room next to me. And maybe if he came along to all of these things he would understand more the toll it takes on me.
I used to ask him to come along, but the first words out of his mouth are often “I need to look at my schedule.” or “I don’t think I can make that work.” I understand his job is a big one, and he needs to be there, but it would be nice to feel like my medical treatment is as important to him as it is to me.
I understand I play a part in this. I rarely complain about going alone, or flat out say “I need you to come.” Because if I think about it logically, I really don’t need anyone to come with me. I’m a big girl and this is my problem so I should just do it. On the surface, it looks as though I’m good on my own. Yes, I can do it alone. Yes, I do feel confident in my abilities to advocate for myself in this process. Does his response “I have to look at my schedule.” make me less inclined to ask? Of course. I am reluctant to feel like a burden on his life any more than I already am.
Besides, constantly planning my medical treatment around his work schedule is exhausting. It’s enough with the kids’ schedules and trying to maintain a social life while keeping my household in order. I can’t have his work schedule restricting my treatment.
So in case all of this doesn’t say it clearly enough:
I need someone you guys. I need someone who will sit with me for hours and read studies and reports and talk about the details over and over again. I need someone who understands that this is the only body I will ever get so it behooves me to make the best decisions.
I need someone who will say “I’ll be there no matter what.” When I tell them I have an appointment for a consult or imaging. I need that person to listen intently to what the provider is saying and I need them to ask questions and participate in the consultation. I need someone who understands how strong I am, how much I fight to have a life that is fulfilled despite my constant pain. I need that person you guys.
I need that person because it is starting to get to be too hard to be that person for myself. I preach advocacy for yourself when you are in the trenches of medical issues, but is it too much to ask that my spouse also be that advocate? Is it too much to ask someone else to be even half as invested as I am?
I understand that I put off a vibe that says “I’ve got this, no need to jump in.” but I really, really need someone to jump in.
And bring a floaty.