It's Me and You

Everyone comes up with their little tricks to cope through the really hard times. It's a fact of life for people like me that there will be horribly challenging moments and we need help getting through them without have a complete mental breakdown.

For me, lately at least, my truly horrible moments seem to be when the pain, for whatever reason, escalates suddenly, out of nowhere. I live in constant pain and I'm on a bazillion medications. So I can deal with the pain. Except for the sudden onset escalations. Those send me into mini-panic attacks (because the pain alone isn't bad enough, stupid body of mine).

The triggers for sudden onset pain are typically sudden cold air/wind, when someone accidentally touches my tender spots too hard (pat on the back, squeezing hug on that side), when I fall, when I almost fall but catch myself with my left hand (stupid body reacting stupidly!), and finally the "just because it happens" trigger. I also have the mini-attacks from bad news/emotional pain.

I can't prevent any of these. But when they happen my slight familial tremor I inherited from my mom goes crazy and one body part shakes as if I'm seizing. Literally, if I'm in bed with the tremor, you'd think you were in one of those tacky old motel rooms with the vibrating bed.

In addition to the tremors, my reaction to the pain is tears. Duh, right? Kevin and my dad have gotten really good at identifying the onset by the look on my face (if they aren't by my side for me to just tell them). I clench my face, my entire body as well, but really squeeze my face, refusing to cry until I'm somewhere safe. A private room. The car. Just not in public, not in the middle of my grandma's 90th birthday party, or Opening Day for the Nats, or Easter at my cousins.

I know I need to be hugged. Held. Loved. Reassured. I used to be a "tough girl" who didn't want people to see me cry, ever. If I had to cry I would run away alone, lock myself somewhere totally private. Now when this happens, Kevin or my dad or whoever is emotionally closest to me at the event damn well better take me away. I can't be alone with these tears. I have to be held, so I can start feeling safe.

It is a slow process. It gets worse before it gets better. Once I'm in the private safe place to cry I let go of the tension and my tears come cascading out. My body shakes with sobs, even if the tremor doesn't kick in. My hair gets soaked by my own tears. Kevin's shirt gets drenched. I feel as if I can't breathe, I feel as if I can't possibly survive the next few minutes or hour. I feel like I'm going to die.

I am in that moment trying to rescue myself from drowning in my own pain. I can't possibly do it. When this happens and I'm alone, I inevitably cry and sob until my body is exhausted and I fall asleep. But the best way I survive this, is with Kevin in charge.

We learned the best technique on Opening Day. We were having a great time and it was my first game at Nationals Park. It was actually really warm, even hot, most of the day. I was loving every minute of the experience, sharing one of K's favorite things with him. Watching Bryce Harper hit TWO home runs on Opening Day. What a day!

The Nat's won and we were in celebration mode. Everyone was. We had to wait to meet some friends so Kevin could give them the shirts he made (very clever, about Pitcher Ross Detwiler, "Like a Ross"). Anyways, we were waiting, waiting, and it started getting really cold. And then windy. Double trouble for me. Kevin saw what was happening, and rushed through the exchange with his friends. I tried to smile and greet them nicely; he has wonderful friends.

We rushed to the car, which was parked reasonably close, but at that point it felt hours away for me. I failed my usual steely face and tears were streaming down my face as we navigated the crowd. I just kept my head down and trust Kev to guide me.

Once we made it back to the car, I was immediately relieved to be out of the wind. We laid my seat back and I let the waterworks start. Kevin held me, petted me, reassured me. He looked into my eyes and showed no fear of his own. He told me it was going to be okay, over and over. He said, "It's me and you baby, it's just me and you. It's going to be okay, because it's me and you. I'm not going anywhere. It's me and you."

Time passed. I calmed some. His parents came to the car to drop some things off for us. His mom reassured me and patted my hand through the window. His dad gave me a Nats hat, my very own! They understand remarkably well for me so new to me and my stuff. After they left, Kevin repeated those lines a few more times. The pain was still too much, but I was calm. I was back.

I told him, those words were the best comfort/reassurance I've ever gotten during any panicky times. Most guys I've dated ask me "what am I supposed to do?!" even when I'm halfway comatose after fainting. And once they see something like this, they run away. Men have always run away from me because of my health problems. Kevin is the first to stay. And being reassured, "me and you baby, just me and you," reminded me I'm not alone. I never will be.

What is your morning routine?

My husband's morning ritual starts out very similar to yours, I imagine. His alarm clock goes off waaaay too early (6am) and he stumbles out of bed. He showers, brushes his teeth, and gets dressed for the work day.

By the time he gets to me, he's just about ready to go. But his hardest tasks are still ahead of him. He has to wake me from a medicine induced sleep, something that is very different than simple, normal sleep. And I've never been a morning person anyway.

5 minutes later (I think) he helps me get dressed. We've laid the clothes out the night before because I'm too groggy to think in the morning. My clothing has to be comfortable and loose or wide fitting on the neck. My scar still hurts too much for the pressure of clothing.

I pee then brush my teeth; simultaneously he takes my purse, meds, and back o' junk/stuff to do downstairs. When I step out of the bathroom he is sitting, waiting on the bed. He leads me downstairs. I fall a lot, so I rarely walk up or down stairs alone anymore. I fall A LOT. Even on solid ground, not just stairs. It's awful.

I take my first set of pills at 6:30 (and every 2 hours after for the rest of the day). Kevin makes us both coffee (some days before I come down, some days after) and brings me an ice pack. He tucks me into "bed" on the couch. I get goodbye kisses and almost always a forehead kiss. Those are my absolute favorite. His forehead kisses make me feel safer than most anything. I thank him for all that he does and he leaves for work. I know within an hour, after he gets settled in at work, I will get a text from him, telling me he loves me.

On the coffee table are two Nutri-Grain bars (already opened to save my dead arm the trouble) my pills, my water, my coffee mug, my reading material, and my to-do list. I am in and out of sleep for the next few hours. I have alarms on my phone going off every two hours, and I have phone calls or texts, from Kevin, alerting me so I don't miss my medication. For some reason I don't have alarms set in the afternoon. By then I'm usually reliably awake. But if he doesn't tell me it's time to take my pill, I often forget.

He rarely shows frustration with my health problems/our life struggles. I often do. I cry almost every morning once he walks out the door. Between the meds and the tears I fall asleep quickly. I try to be strong for him, because he is so strong for me. I am exhausted from the physical battles, the emotional battles, the spiritual battles.

I am ashamed of my current way of life; though I know it's not my fault I've fallen ill I'm still ashamed of it. I feel I am grieving the loss of the person I know of as myself. She no longer exists, in the physical world. Only in our hearts and mind. I miss her. I'm still figuring out who I am now, and it isn't easy to do. I suffer from a loss of dignity in the things I can't do or need help with, but that list is a whole other post--literally, already saved in drafts!

Speaking of, I actually have several blog posts saved in drafts, almost ready to go. This was one of them. Some of the posts to come:

• things I'm unable to do at all, things I'm unable to do without assistance, and things I've lost
• my official diagnoses (health terminology and good old normal human speak)
• and other personal "us" things that keep Kevin & I going

As I mentioned, most of this entry was already saved in a draft, but I decided it was time to post this one because of a blog post I just read What Says Love In Your Marriage? and THIS is it. This morning routine that is so good for me, and so giving of Kevin SCREAMS love to me. 

I've felt guilty for the added burden in the morning. I mentioned that to him last night and his reply shocked me. He told me he likes this new routine. Even though it's a little more work, he gets to start his day talking to me, rather than just kissing an unconscious blob goodbye (our previous morning routine). I'm in awe of his positive outlook and deep love for me. I often feel I don't deserve it, but I sure am grateful for it.

Some People Don't Believe in Heroes but They Have Never Met My Husband

I named this blog "This Life Would Kill Me If I Didn't Have You" after the country song "If I Didn't Have You" by Thompson Square. It quite literally describes my feelings toward my husband, Kevin.

The quote as the title of this post also accurately describes my feelings. I thought heroes were limited to men and women in uniforms: army, navy, marines, coast guard, air force, police officer, fire fighters, etc.... And I REALLY didn't believe in someone who could be my personal hero, my knight in shining armor, my prince charming.

I stopped believing in fairytales when I was..... actually, I don't really remember EVER believing in fairytales. Now I do. Because my life fits the very basic requirements of a fairytale: my life sucked, I couldn't do anything to make it better on my own, and then with the help of my prince charming and marrying him obscenely quickly, my life got better. We're living our version of happily ever after. It's a little different than the normal fairytale "happily ever after," but it ours.

So, be warned. This blog is sure to not be all about rainbows and butterflies. He's my fairytale, my king, my hero. This is a love story. But like all true love stories, like all real life, sometimes it'll be more like, this is how things suck... But he's my shining light through it all. He always has been, and he always will be.

As life fit that fairytale model, the hero fits the profile as well. He has been fearless, brave, and unfaltering. He set out on a quest. Ever since I met him 8 years ago, he has been on a journey to me. His quest took some interesting turns, like any hero's quest does. In metaphorical ways, he has gone to battle for me, time and time again. Over the years he nursed me back to health, time and time again. (All these steps were his story though, not so much mine...)

And then this year, he rescued me from certain death. That is not an exaggeration. Literally. It is 2013 and this man LITERALLY saved the life of this modern independent feminist. So my faith in fairytales has started, after 26 years of being a non-believer.

The posts that follow will be mixes, I am sure. Stories of his awesomeness. Stories of my sadness. But all throughout I am certain he will amaze me more and more every day.