ghost

I would like to start by saying this is my first blog I’ve actually had to “organize,” per say. If you don’t know by now, I tend to just blurt out whatever is on my mind onto paper. No planning, no sense of order, just my mind spilling out. Which is why I often find it bizarre that everyone says I’m a great writer and have a good way with words because, truly, I just write, no deep thinking attached. However, I had to put some thought into this blog. Not because it was hard to write, but just because these thoughts have been building up in my head for the past month, and I had to be positive that I wasn’t going to forget a single thing. So, here we go.

I am writing this at midnight. I can’t sleep, I’m exhausted, but can never sleep. Every night I have to do something until the second I fall asleep. I get told to put my phone away, to wind-down, but every second I have to sit and think I fall apart. I have to constantly be distracted by something to keep any last bit of sanity I have.

I haven’t been avoiding writing this, I actually have been wanting to for the longest time, but my mind has not enabled me to. I almost always write these when I am in school, and have taken my ADHD pill. It’s like I can’t get myself to do this without that structure. My pill especially helps in ways I can’t even explain. It’s like gears in my head finally turn and I am able to get up and get writing. With that being said, I hate my pill. It has so many cons, which I often have to think to myself, is it worth it? I haven’t taken it in over a month, and I feel like a ghost. My brain is so far gone, it’s like every second I’m living is just some fever dream. I feel like nothing is real.

Here I am, explaining yet again, my health. It has taken over everything. It feels like the only thing about me now. I’m no longer a high school student enjoying her life. All that’s left of me is a sick kid that has just been getting worse, getting left behind by everyone. There’s nothing to me anymore. Just sickness.

It’s hard to get people to understand really how bad I am, and have gotten. The thing with chronic sickness is, you often don’t look sick. I’m not confined to a hospital bed, getting surgery, or being pumped with drugs, although sometimes I wish I was. I wish that was the case because then I would be finally taken seriously. I wouldn’t be the kid that just bailed on school because she didn’t want to try, or the kid that quit the sport she loved because it got too hard. I am sick, but to everyone I just look like an average kid that has no excuse to be “skipping” everything. So yeah, I wish I looked the part. Maybe if I was sitting in a hospital bed people wouldn’t think I’m such a sorry excuse for a person.

One of the hardest things about this is people's opinions. I know there’s no way for anyone to understand what I’m going through, which makes me feel much worse. At first, when I would explain things to people, they would say things like, “Oh it’s just anxiety,” or “Maybe you just need an antidepressant,” and let’s not forget, “Yeah, this year has been hard for everyone.” I struggle from both anxiety and depression, but that’s not why I am sick. Honestly, they are both CAUSED by my illness. So yeah, I get worked up when anyone tries to sugarcoat my sickness.

It happens too often. Too often am I told that it’s “all in my head.” I KNOW that I’m sick. I know that I’m sure not “making it up.” Why would I ever want to miss out on my life. But, I’m just a fifteen year old girl, so when am I ever taken seriously? When I research and find links to what could possibly be wrong with me, I get ignored and shrugged off because what on earth could I know. I have matured so much faster than typical kids my age, just because I got handed this awful sickness, that may never fully disappear. You’re about to find out there’s a lot more to me than anyone gives me credit for.

Bottom line is, if you aren’t sick, chronically, you have no idea what it’s like to be. Living with chronic sickness is a whole different kind of living, barely living that is. So yes, it upsets me when people who have only been healthy try to tell me what I need to do to get better. I often am told I need to eat as clean as possible, put all my effort into getting the best sleep possible, and meditate and do breathing practices to “feel better.” None of that cures a chronic illness. Those will all benefit the average healthy person sure, but when you are chronically ill, it’s hard enough to get through a day, no energy is left to try to “better yourself.”

Personally, I am tired of going the extra mile to “improve my health” when it doesn’t help anything. What I’ve been needing is a diagnosis, and treatment. I’ve tried doing the absolute most to make myself feel better, but it does nothing. You can’t kill a shark with a pebble.

I mentioned how I’ve been feeling like nothing really is real. My mind is really messed up, what else is expected? My head is in fact very damaged. I know I won’t be able to do a very good job at explaining this, but I hope you can try to picture it. I sleep awful. I stay awake most of the night, not falling asleep until I am completely worn out. Being awake at surreal hours, I’ve learned, messes a lot with your mind. I’m awake, feeling so sick, but just finding more and more distractions. Once I finally fall asleep, I wake up so many times. Every time I fall back asleep I feel like I’m walking into a new reality. Once I finally wake up, I have no sense of what’s real and not, and am often confused for the next hour while I lay in bed. To give an idea of my schedule these days, I fall asleep probably between 12 am and 4 am (I try my best to avoid looking at the time, it often just upsets me). I then sleep the entire day and wake up around 2 or 3. It’s not the ideal schedule, and I honestly hate it, but I’ve learned there’s really no way around it. I have given up trying to understand my mind.

I also mentioned how I have been skipping taking my ADHD pill, and how I honestly hate it. But, at the same time, it makes me feel like I am actually functioning like a normal human, so it’s a tough gamble. I definitely think that's why I’ve felt so at loss with my mind, but I really don’t know what to do at this point. I’m just going through the motions.

For as long as I can remember, I’ve struggled with memory. It has gotten so bad that I lose multiple things on the daily. I often joke that there is a ghost messing with me. Still, I can’t help but get so frustrated with myself. Day. After. Day. Why can’t I just remember? I often criticize myself, tell myself how dumb I am, and how stupid I am. Not the best thing, probably. Sometimes I will just sit down and bawl, because I simply don’t understand why this can possibly be so hard for me. Not only that, I also forget everything. I forget tasks, things I need to schedule, or need to order, even things I plan to do, things I enjoy, which hurts the most. I can write things down on my hand and still forget all about them. I beat myself up about this too often.

It’s been killing me that I haven’t been able to get these words out on paper. The thing is, no matter how hard I try, I can’t get these thoughts to flow out of my mouth. I can plan a whole conversation out in my head 20 times, but I will never be able to speak my feelings when it’s actually time. The worst part is trying to explain things to doctors. I NEVER am able to tell them how I’m actually feeling, or explain things I’ve researched, or learned, and it kills me. I don’t know why I can’t just SPEAK. But, at least I have writing. This is why I enjoy it so much.

I can confidently say I have never been in a worse physical and mental state in my entire life. I’m exhausted, run down, sad. This illness has found its way to affect every part of me. It’s prevented me from doing everything I love. I haven’t been able to read, to learn. I don’t even remember the last time I ran. Running is what makes me the happiest. It hurts seeing my friends running track this year, while I spend my entire day in bed.

Not only has it affected everything I enjoy, but it’s killing me from the inside out. On top of feeling so sick, I hate myself. That sounds really blunt, I know, but the version of me I’ve become is someone I have never wanted to be. I lay in bed all day, sometimes getting up and moving to the couch, then eat a bit and go back into bed and try to fall asleep. Repeat. I don’t get ready, change, shower, I just walk through life like a ghost. I look back through pictures of me out with friends, or photo shoots, dressed in my favorite outfit, with the biggest smile. Now I get up and look in the mirror, at my face that no longer seems to look quite right, my eyebrows that have been thinning by the day, my hair and eyelashes that are falling out, my skin scarred and scabbed from me constantly picking it. I can’t escape it. I know it seems like a dumb thing to even care about, but it sucks waking up and hating what you see. My body is no longer in the same condition as it was when I was able to run twice a day, plus workout. Dare I even step on the scale anymore. It’s all cliche, I know, but it’s just adding to the sorry excuse of a life I’m living.

I don’t talk to my friends. When asked about plans, my response is always, “Once I feel better.” I feel completely detached. All I do during the day is watch YouTube and streams. If it weren’t for the streamers I watch, I would honestly be so far gone. Yeah, that sounds stupid, but when bedridden, what else can I rely on? Quite honestly, it’s the only stable thing in my life right now. My friends tease about it but really it’s the only thing that gives me a sense of happiness.

Wow. I probably won’t even reread this blog. I hate being vulnerable like this, but it is very needed. Now, to finally tell you all what is actually wrong with me. Finally, an actual diagnosis, kinda (I can never really win, huh). If you’ve ever had a conversation with me about my health, you’ve probably picked up on the fact that I have gained a distrust for doctors. What can you expect? I leave every office being told “I can’t help you.” Until now.

I met the most amazing doctor. Never have I talked to a doctor and felt like we were actually on the same page with things. It took me a bit to believe him, but finally I have some hope. He gave me the tests I needed, and the results that I’ve been begging for. It sucks, but I know what it is. I have TBI (traumatic brain injuries). My brain is struggling. On top of that, I have mold. And just when I thought there couldn’t be anything else, I just got tested AGAIN for Lyme. I have a compromised immune system. My liver, kidneys, and gallbladder are all overworked. With that information, my doctor believes that Lyme is most likely also a factor. My body has been living with these toxins for as long as I can remember. This isn’t going to be an easy recovery.

Now that I have results, I have treatment. Sounds like a good step right? Yeah, so they make me feel even more sick. Great. I know in a year or two it will all be worth it. But this is insane. More supplements, cranial therapy, laser therapy, and hyperbaric oxygen chamber therapy. My body is in shock. It’s like getting better is going to require a daily battle.

So, I guess this is it for the overdue, and much needed, blog. I’m surviving, to say the least. I have a good support system and faith that God has a reason for all of this. I hope after you read this you have a different understanding of chronic illness. It is real, and it is a daily struggle. It’s not all in people’s heads, and they aren’t lazy. I can’t wait to get through this all, and educate anyone and everyone on overcoming chronic illness. If you read this far, thank you for caring, I hope to be able to make this all worth it someday. Hopefully, I can make a difference for someone else.