Yeah, maybe things have changed a bit. Maybe i’m facing a chronic illness, maybe i’m facing one that is even threatening to take my life. Either way, please try to remember that i’m still me. I know things are different than they used to be and that my world, and maybe yours, has been turned upside down and spun 180 degrees. I might be too sick to get out of bed some days, or have to cancel plans last minute because I just don’t feel up to going out. Trust me, I don’t want it to be this way and though things may have changed, I don’t want you to treat me differently. I want to be that fun loving, excitable, and happy go lucky person that you used to know and somewhere beneath all of my symptoms, I still am that person.
I’m still that person that you shared many laughs with. I’m still that person that you hung out with and talked for hours on end about irrelevant drama with. I’m still that person that you ran around while we were screaming at the tops of our lungs, having not a care in the world. I’m still that person that you stayed up with until 3am binge movies and eating all the junk food we could get our hands on. I’m still that person that you came to when life just wasn’t going your way, and you needed someone who understood. I’m still that person you knew way before all of this happened. As much as things have changed, please help me keep some kind of normalcy in my life. I don’t want to forget the person that I used to be, and I don’t want you to forget it either. I don’t want our amazing memories to fade into the background of my new reality, wether this reality be just for now or for forever. I’m trying to keep those memories alive because right now i’m fighting to get that person back.
No matter what, don’t forget about that effervescent person that you used to know. It might be challenging for the eye to see, but please look just a little bit harder. Beneath the shell of my exhausted body and behind the tears that I occasionally shed, I am still in here. Please don’t forget about the real me.
I am currently feeling sad, frustrated, and unmotivated. I got up this morning in a fairly fowl mood which wasn’t surprising considering that recently I haven’t been much of a morning person. No big deal and I went on with my morning to get ready for physical therapy, as I do twice a week. Normally PT will put me in a better mood, but even today it couldn’t kick the mood I was in. It was a good session considering I rolled my ankle again the other day and had a not so hot lesson yesterday, but I still left feeling agitated, which is far from how I typically feel afterwards. This mood has continued throughout today so it has been a bit of a rough one for me. It’s okay and I know tomorrow will be better, but damn, today was hard. I’ve lashed out at my mom a few times (sorry mom) as well as my dad which he frankly, deserved. Not even “Hamilton” is pulling me out of this rut tonight, AKA those of you around me better run and hide, like now.
I’ve been known to set a little “too high” standards for myself and the last few days i’ve been shoved back into reality so maybe that’s the source of this mood. Between riding and PT, I have high expectations for myself and when I don’t reach those it frustrates the hell out of me. Instead of admitting that something is hard for me, i’ll find any way to swerve around admitting it. Now this has been going on a while and my PT has said a few times “There is no denial in the Nile”. You have to admit defeat to move forward at times, and I guess that’s where I stand at the moment, and it frustrates and confuses me. Hopefully tomorrow will be better and if I find the motivation to get myself out to the barn, that i’ll have a good ride.
Monday is a big (and scary) day. You see, i’ve had this little bugger sitting in the right side of my chest for nearly a year now, and it is time for us to part ways. For the past year, Mr. Portacath has been making his home in the right side of my chest and has greatly over stayed his not so welcoming, welcome. He (it) not so comfortably made his (its) home there and hasn’t budged since. Truthfully, i’ve liked it much more than the 2 PICC lines I had in the past except for one reason. You see, the first (and only… yeah) time I used my port I almost died, so that was a fun experience! *Please note the sarcasm!* While trying to start back on my IV meds, I had an anaphylactic reaction and if my mom hadn’t been right there, I would’ve been in big trouble. Alas, it is time for me to serve Mr.Portacath his eviction notice. He will be moving on out (FINALLY) early Monday afternoon. I’ll be out of commission for a few days and then it’s right back to working hard in PT – with a little more freedom in my chest! Lets hope no Port will ever be moving back in!
I’m fighting against my own body, i’m fighting against all the wrongs that it seems to think are right. I’m fighting constantly, even while i’m sleeping my body is waging a war, never getting a second off. When i’m sleeping i’m reminded of this endless battle I am fighting, the nightmares are unbearable and at times extremely violent and horrific. Often on my “Nightmare Nights” I wake up drenched in sweat, crying, and scared out of my mind. So at that point I have two options, one being that I could stay awake and feel the physical pain throughout my body, or I could go back to sleep and face all my real life fears there. Not only that, but when i’m in those nightmares I cannot wake myself up. I’ve tried multiple times but the only thing that will wake me up in my dream is pretty much something catastrophic happening either to myself or to my family. Nothing is “off limits” to my brain and trust me, it gets pretty darn creative. If you took a look inside of my head on one of those nights you would see plane crashes, boats sinking, bridges collapsing, criminals coming after me… you name it my brain has already come up with it. I’ve even had a nightmare about hot sauce, yes you read that right, hot sauce.
If you are not a “Spoonie” as they call people who are sick with various illnesses, which I absolutely despise being labeled as, you probably wouldn’t understand. It is one thing to be on the outside watching your loved one turn into a shell of who they once used to be, but it’s a whole other ball game being the one stuck inside of the torture chamber. I am constantly fighting against the physical pain, but the emotional pain is starting to take a toll on me. I just feel worn down, exhausted both mentally and physically, Every new symptom that pops up just drives me even more insane than the previous one, my pain tolerance seems to have gotten lower. My patience is dwindling and my happiness comes and goes. Motivation? Sheesh, that left a few weeks ago. I’ve lost my drive, and I know it’ll come back, but right now things are hard.
I got to watch many people I knew leave my life when I first got sick, then the other day watch them graduate. I’m jealous that their worlds are still spinning while mine seems to be at a standstill. They have genuine smiles on their faces as they will be headed off to college in the Fall while i’m at home on my couch hooked up to an IV. Am I mad at them for it? No, absolutely not. Am I jealous? Extremely. I’m still fighting and I still have a fight ahead of me, every day is a fight. Am I going to give up? No. Am I going to keep fighting? Yes. I am getting kicked down right now but as I slowly find my balance on my feet I will kick it right back down. I will not stop fighting until the fight is fought. I’m going to win…. I will win.
“Just because it burns it doesn’t mean you’re gonna die, you gotta get up and try try try…” – P!nk