An incredible true story of strength, honesty, and heartbreak that will hopefully bring awareness to an underfunded and ignored disease, Myalgic Encephalomyelitis (M.E.)
It’s been a while! I can’t remember the last time I talked about my health on the blog so I thought I would give an update on all things chronic pain, brain tumors, and disability.
September is National Pain Awareness Month, something that I didn’t know existed, but I’m here for it. This is just a little stream of consciousness about my own struggles with pain.
June is National Migraine and Headache Awareness Month. Wear purple to show your support for advocacy, education, and research.
How do you know when to seek help?
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.
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.
“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.
I didn’t get much out of my trip to the Mayo Clinic in December of 2017. I was there to be evaluated for everything. Having been sick for so long, we were at a point where we would do just about anything to narrow down a diagnosis. I had one of the most elaborate and detailed neuro and general exams, tons of tests, and they took nine vials of my blood! Eight days in Rochester, Minnesota (in the snow!) and all I really learned was that my brain tumor hadn’t grown any bigger and that I was lactose intolerant.