Is she really writing a blog post about her cat?
WARNING: This blog is meant to be about me—through the highs and the lows—and well, here are some lows. This is a sad and sappy blog post, but I just need to get my thoughts out. And what better way than for a bunch of strangers on the Internet?
“It’s okay not to be okay.”
2018 was the best year I’ve had in quite awhile. My health wasn’t the best, but it didn’t completely fall apart like it has the past few years. I managed to stick to some of the goals I set for myself at the beginning of the year, which is pretty incredible, especially when it comes to my usual track record. I used to make resolutions every year but I rarely ever stuck with them. This was the first year that I feel like I actually showed some growth. By calling them goals, I feel like there isn’t as much pressure and I think that’s why I was much more successful. Here are some of my accomplishments and then some of my goals for this next year.
Knowing the exact date you got sick is a blessing and a curse. Going to doctors I’m able to give them a very concise history of when everything started. However, I’m constantly reminded of that day, every year. I’ve talked a lot about my chronic pain journey—especially when it comes to my brain tumor—but I thought today, on this morbid anniversary, I would give you some insight into how this all started.
I really do have a lot to be thankful for this year:
Painsomnia—it’s not an actual medical term, but anyone in the chronic pain community knows exactly what you’re talking about.
Saturday was my headiversary. Three years ago, on October 13th, 2015, I had brain surgery to remove a tumor.
I’ve officially been in Florida for almost three weeks and things are finally starting to calm down.
“How much pain for how long is OK before it’s acceptable to just give up?”
Ever since finding the website the Mighty, I’ve had so many more instances of acceptance when it comes to my chronic pain. When you’re diagnosed so young—20-years old is pretty young for a life-long condition in my book—it’s easy to feel so alone. Unknowingly, you start to isolate yourself from friends and family and start to feel like no one else could ever understand how you feel.
The other day I came across an article on the Mighty titled: “18 Taboo Topics About Chronic Illness You’re Not the Only One Having.” It felt as if the dark and gloomy sky had opened up and the sun starting shining down on me. I was finally being heard. Here are some of my favorite topics that come directly from the Mighty community:
“I actually look forward to procedures that require anesthesia because I get to go right to sleep. That’s so sad to me.”
“[I worry] nobody will love me because I’m sick.”
“I think about how much I dread going to the doctor. I hope I have enough symptoms to have them believe me and take me seriously. But I don’t want enough symptoms and hurt going on to warrant a crash. It’s complicated.”
“I think pretty regularly that I’m a burden to everyone around me, and that if only I wasn’t sick. I have been known to think I would be better not being here, not that I want to die, just that my life isn’t exactly worth it because I don’t really do anything. I’m ‘failing.’”
“My taboo thoughts have always been that I hope my tests come back showing something. More clues as to what is going on or why it is happening. Most of my test results come back normal or just ever so slightly off. Nothing is ever off the charts or crazy enough to get the attention I feel I need.
“Any drug that makes me sleepy or slightly ‘stoned’ I love.”
“I feel frustrated every single day. Because the person I am now can’t even do 10 percent of the things I could do before I was sick. I’m constantly irritated and grouchy due to frustration.”
I no longer felt so alone. I’ve had some version of these thoughts ever since I’ve been sick. These aren’t things I can talk about with other people, especially people who have no idea what you’re going through. And to the outside world, I have a wonderful middle-class life filled with a supportive family, successful friends, and financial stability. But if you take the time to look closer, you would see that those successful friends don’t have time for you and that financial stability comes from your parents because you’re unable to work and provide for yourself. We try to put up a front, but on the inside our thoughts are dark and lonely. Knowing there are people out there that share your thoughts—share your pain—the world doesn’t feel so alone anymore.