Chronic Illness: You only feel like you're dying

Tonight, I feel like shit. I ache and burn like the flu is in my joints. I’m shaking cold and burning up at the same time. Tomorrow, I will most likely ache in every joint and muscle in my body. My shoulders will have little invisible red-hot knives poking into them whether I move or not. My ribs will have much larger pains wracking them whether I breathe or not. Today, I helped run a program at the library. I told my coworker, “If I pass out, don’t freak out, just call Jess. It won’t be the first time he’s had to carry me out of a job.” Today, I threw a bachelorette party (with massive last-minute help due to the insane generosity of a friend who knows how my brain scrambles when I get sick). On both occasions, I mostly sat and tried to look the least sick as I could, which is not an easy feat. On the drive home, my bones felt like they began to burn. My eyes and breath were hot. But I’m not sick. I cooked and had an allergy attack. Maybe now an infection from it. So maybe I’m technically sick. Just like I will technically get better. Most likely. But odds are I will never get better.

Last time I felt like shit, I had a cold for three days. That was almost two months ago to the day and I still haven’t recovered. I skipped classes, strategically skipped assignments, skipped an untold number of social functions and skipped communicating because typing a message was too exhausting. I couldn’t hold a book for over a week. Reading a single page was the most exhausting thing I’ve ever done. My chiropractic appointment left me feeling like I had experienced a mugging in a dark alley from all the inflammation that was still there. I cried in bed, I cried in my husband’s arms, I cried in the car, I cried on friends couches, I cried in a friend’s arms. I’m sure the list goes on. Each new step down in health is a mourning process. A version of me has to die and I have to figure out who I am all over again. How will I live, how will I circumvent the pain when everything brings it, should I quit school for a term until I know my limits or do I forge on and hope for the best? When bad days are so, so bad, it’s hard to tell what will last and what will remit.

Right now, I’m on a weird emotional high. Things got so bad that instead of wanting to cry, I feel giddy. Giddy is not a generally acceptable emotion when you can’t hardly move from the pain. Giddy makes people think you’re faking. Giddy means people dismiss you and “can’t take you seriously” until you display a more “appropriate” emotion. I’m not sure when others decided they knew what emotion I should be displaying but somewhere along the line they did.

Tonight, my husband wants me to sleep. Sleep is supposed to heal. Unless you can’t wear your CPAP, then sleep doesn’t do much. I want to sleep but I know this stage. I’m going to stay awake far too late and maybe even watch the sun get light outside before I can finally sleep. I may not sleep at all and instead will go through all of tomorrow cackling with hyper laughter until I crash late in the afternoon. Not sleeping feels better than waking up choking from congestion.

The pain is slowing and my mind along with it. The rest is blissful even if temporary.

Big News!

We attempted to make a cute, probably rather annoying vlog, but YouTube decided we had to restart every time we finished recording, so a normal blog it is!

Jess and I are  moving! Where? Oregon. Why? Health problems. Whose? Clearly mine (Jamie). When? September 30th. That's right, less than a month. How? Road trip! We will be visiting Mt. Rushmore, Crazy Horse Memorial, Yellowstone, basically all those cool places you see on the back of quarters. If you have any ideas of anywhere else we should stop, big or little places, let us know! Because we are seriously out of other ideas... We will be going through Indiana, Iowa, Illinois, bottom of Minnesota, South Dakota, Wyoming and Idaho. If you live in any of those, we'd love to see you! Especially if you have free coffee.

Why Oregon specifically? Because of my vasovagal syncope, I need a milder climate than Cincinnati. (AKA I'm really sick of passing out simply because it got over 90 today and humidity was terrible as usual.) We tossed around several places, but ultimately decided that if we have to move away from one family, we might as well move to where the other family is instead of starting 100% over in a brand new state. We're excited for the awesome coffee Portland seems to have in spades, and one day would really like to have a house on a mountain.

What will we do once we're there? I will be a stay at home wife/writer and Jess will be in the IT field, similar but different to what he's doing here. We're hoping to find a nice two bedroom apartment so we can have as many visitors as want to come experience the craziness of Portland!

What happens if it doesn't help my dizziness? It's basically impossible for it to not be an improvement from Cincinnati, but if it's not good enough we'll pack up and move again in a few years. (We really, really would like for this not to happen.)

Am I excited to be moving? I'm super excited for the road trip, but I can't imagine what it's going to be like once we're actually *in* Oregon, so it's hard for me to say! I have a lot of optimistic expectations, but it's hard to say I'm excited, when I don't know what exactly will be happening. I am looking forward to finding out though.

Am I sad to be leaving? I'm sure I will be once I've left. Now and then it feels bittersweet to know that it's the last time we'll live in this apartment, last time I'll live in Cincinnati, etc. But it's hard to be sad when I'm so incredibly excited for this cross-country road trip my husband and I are *finally* getting to take!

For those of you who are DYING to know about our trip, we hope to be able to vlog about it while we're on the road. If that doesn't work, we'll at least have a decent amount of Facebook posts and hopefully some blogging!

In Love With Love

As humans, we seem to have fallen in love with love. I get it, I think love is great. I happen to love love myself. The problem is, people think that falling in love will complete them or fix their life. Visions of roses and candies and the perfect wedding day dance through our heads. Many women begin planning their wedding day as little girls, and see it as the highlight of their life. (I suppose that would explain why some ladies turn into bridezillas. If I had grown up believing my wedding day would be the pinnacle of my life, I would be a bit angry too if it didn't meet all of my exacting expectations.) Things can get messy if you think one romantic day will guarantee a successful life together. The first question everyone asked us after we got married was, "Is it everything you dreamed it would be and more?" Well, actually, no. It definitely has been "more", though.

New Beginnings

There's nothing quite as satisfying as finding and doing what you really love. Escaping the typical dread of Mondays and coming home excited to share what you did instead of counting down the ticks as the clock creeps closer to quitting time....
I love seeing people's faces light up when they talk about their passion. Most people daydream about making it their life's work and maybe even make plans to do something about it. Then there's the trepidation that inevitably follows. Is this really able to work? So many people stall here.

We Came, We Saw, We Drank Chocolate

 Over Jess' Christmas break from college, we visited family in Oregon for a belated Christmas. On our second day, we went to Portland with his sister and brother-in-law and finally did some proper tourist nonsense that we hadn't managed to do on previous trips. We may not have quite conquered Portland, but gosh darn it, we certainly drank chocolate.

Giving Yourself Grace

Over the past year I've had to come to terms with what my "new normal" is. By that, I don't mean that I've had some dramatic shift in my life that's taken me by complete surprise. I've had to accept that my myriad of health problems aren't going away. I don't have a "someday" that I've been planning on for so long. "Someday" my feet will be as good as there were when I was a kid. "Someday" I'll discover a magical medication that doesn't currently exist that cures my dizziness. "Someday" I'll finally outgrow my insomnia and feel well rested. "Someday" I'll have the energy to come home from work and do the dishes immediately. I'm not going to get my someday. And you know what? That's okay.

Obligatory Winter Post

Let it snow, let it snow, let it snow... Because I'm on bed rest! I'm fine with these fluffy flakes floating gently from the sky and coating everything in a deadly ice, but it had better be done by the time I'm walking. For those who don't know, my toe was moved 9mm to correct a genetic bunion and a plate inserted to hold it in place. I am not in pain, my mom bought me dark chocolate and my younger siblings now function as minions for my bidding, so all in all it's not a bad gig.