Sunday, January 18, 2009

Really Struggling

I am really struggling right now. I don’t know exactly how long things have been kind of brewing under the surface, how long I’ve been about ready to burst and feel overwhelmed by everything, how long I have been ignoring my real feelings and just trying to convince everyone else and myself that I’m okay. But I guess that doesn’t really matter now. Looking back, I think I’ve been almost constantly close to a breakdown since before I was in the hospital - when I was so worn down by the fevers and everything else with the infection. After I got out of the hospital in mid-November, I kind of hid my head in the sand and tried to ignore the medical world. I recovered from the staph infection which was a big relief but that didn’t mean that everything was suddenly fine. Things are not fine. They are far from fine. And I just don’t want to deal with it anymore. I don’t want to live around IV schedules. I don’t want to be so exhausted everyday that the thought of having to get up in the morning is painful. I don’t want to have this line in my arm, to be awaiting a call from the surgeon to have a new port placed in my chest, to feel like I can never truly be free from medical contraptions because there is always some foreign tube inside of me.

And I’m beginning to look towards the future with doubts. I don’t know how to really explain it other than saying it seems dim, foggy, unclear, and I am unsure if I will ever feel like I’m really living my life rather than surviving it. And even more difficult, I don’t honestly know how long my road will be. There are times – days, hours, even just moments – when I feel like I will not be here to grow old and grey. There are times when I don’t want to be here. And I don’t know which is worse. Not wanting to be here just brings thoughts that it really wouldn’t be so bad to just give up fighting and let go. I am in so much pain. Beyond anything I reveal to anyone, probably beyond what I allow myself to think about. I have been through so much and I just don’t know if I can muster up the strength to continue on like this for years and years to come. It’s too much sometimes. And on days when hope seems far away and I feel so alone, I wonder if it’s worth it.

Today a seemingly stupid, insignificant thing set me off. After a long morning and afternoon of church, a Parish Committee meeting, and errands of all sorts I came home really looking forward to getting to eat some of the leftover pizza I had made last night – a pizza I had made for myself after making one for my sister (I gave her certificates for homemade pizza for her birthday). But when I got changed into my comfy pjs, ready to settle in for the rest of the day, and went to heat up my pizza I discovered it wasn’t there. I asked around and my sister admitted to eating it for breakfast. This was a pizza she very well knew I had made for myself and without even asking – no text message, no phone call to ask if it was okay – she and her boyfriend ate it. It seems rude, disrespectful, and even if it was not meant to hurt me, it is hurtful that someone would disregard my feelings and do something that they probably realized might be upsetting. It is all made worse by the fact that when I made the pizza last night, I was feeling sick and really not up to making pizza at all. But my sister had asked to turn in one of her certificates and get a pizza last night so I went out to the store for her requested toppings, made the dough from scratch, and made her the pizza she asked for and then, with some of the leftover dough, made one for myself. The precious energy I invested in this endeavor was for her with only a little expended on myself. Of course she didn’t know that until I told her (in a text message) but regardless of that, I was very upset and immediately got back in my regular clothes, borrowed my mom’s snow boots, and went out for a walk because I didn’t want to be here anymore, which I mumbled to my brother as I left the house. And as I walked, I was thinking, “What do I mean that I don’t want to be here anymore? Do I not want to be in the house? Or do I truly not want to be HERE – on the earth, alive, fighting, dealing with all this crap?”

I walked. I texted with my sister to let her know that I was very upset about it but she mostly just jumped down my throat for being upset about it and there wasn’t anything she could say that would make me feel better about it. In my life lately, I’m finding few things that I really look forward to. And as seemingly insignificant as it may seem, I was really looking forward to eating that pizza. It was a little thing, but it kept me going as I ran my errands. I was already exhausted and somewhat upset when I got home (not upset about anything specific, just everything very close to the surface, about ready to bubble over) and then to realize that the little thing I was looking forward to was not there waiting for me…it was too much and I broke down.

As I walked in the bogs, I let my thoughts and tears flow. I cried in anger – towards my sister for eating my pizza (it sounds stupid now), towards this disease for taking so much from me, towards myself for letting things upset me in the first place, towards my body for betraying me and allowing all of this to be so bad. I cried in grief for all that I have lost. I cried because I don’t want to be here anymore. And I cried because I want to be here so badly. I took some pictures with my phone and when I looked back at them I got to some pictures I’d taken of the kids at the preschool and I cried at those pictures, thinking how I care about those kids but don’t want to go back to work. Thinking about how much those kids care about me and how much I don’t want to hurt them in any way. I cried because I don’t feel like I belong anywhere, I don’t want to be anywhere; I just want to be able to go off by myself to some quiet place and leave everything else behind.

I tried to think of someone I could call to talk about all of this, and came up empty handed. I have some friends who kind of understand – friends from the “medical world” – but no one I felt I could call up and cry over the phone about pizza without them thinking I was stupid. And now I’m crying again as I write this and I can’t figure out what I’m crying for, there are just so many things all jumbled together and I’m so tired of all of it. I don’t want any more treatments, no more pills, no more infusions, no more tubes. But I know that if I were to truly stop all my treatment, my quality of life would be gone, I would be totally disabled, and I don’t know that it wouldn’t go on for years and years like that – pain, exhaustion, confusion, nausea, palpitations, sweats and chills, everything I have been dealing with for years and years but on a greater level.

I feel like I am rambling at this point. I don’t know that I’ve written what I wanted to write. I don’t even know what I wanted to write. I just needed to write something. I don’t feel better. I feel like there are still so many tears to cry tonight, so much to cry over, so much to think about, and in some ways, so many decisions to make. I am trying to decide how much I want to fight; even though I know it really isn’t a decision that will end with anything but my going on to do what I have to do. Part of me wants to just rip the PICC line from my arm and give up. And part of me wants to pump myself full of all the medications I can in an attempt to regain any little bit of my life that I can. I don’t want to feel like this, but I can’t help it. I want to be the happy, hopeful person that so many people see me as but I wonder how much of that is really me and how much is a guise I put on for the sake of others and to trick myself into thinking that I’m okay. But I’m not okay. I’m far from okay. And I don’t know when I’ll be okay again.