I'm new here!
Hi, my name is Tct9. I’m new to The Mighty and look forward to sharing my story.
I’ve been seeing a neurologist for almost a year, my visit this past Tuesday he told me he didn’t know how to help me anymore. I’m angry, frustrated and I don’t know what to do! There aren’t many options in my area for neurologist, so I’m searching. But when I’m in a flair I’m pretty much stupid. The pain is horrific, especially when both sides are bothering me at the same time.
Almost don't even care about all the sadness, anxiexty, overwhelm, hopelessness and pain as long as I can still get lost in the shinies and sparklies. ✨🎆
I'm currently hiding out in the bathroom at work. I don't know what's wrong, but I feel ill and can't focus. One minute I'm hot, the next I'm freezing, like I can't regulate my body temp. My face is killing me (stupid nerve) and talking, which is a huge part of my job, is difficult. If I'm honest with myself, I'm not capable of being here today. I'm in the middle of a fibro flare that just won't quit and I'd rather be home, under my heated blanket, just trying to ease my suffering a bit. Instead I'm here, selling medical alert alarms to people. Sad when I feel like I actually need one myself.
I seriously want to go sit in my car and just stay there napping until the end of the day, but since we all know that won't happen, I'll just go back to my desk and keep trying
More good news from my hardwork:
The Facial Pain Research Foundation wrote about my experiences during COVID-19.
I am very proud of this and the words I spoke to the world. Please have a read:
#TrigeminalNeuralgia #COVID19 #pandemic #facialpain #BrainSurgery #TicDouloureux #Proudofmyself #MentalHealth #Accomplishments #pleaseshare #braintumors
I made this quote art to remind myself of who I am.
We are Warriors in the most challenging, painful, and eternal battle against chronic pain in all its insidious iterations.
Fight on, I know it's dark. You are scared, alone, and afraid it will never end. Our burden in this world is massive, but our spirits are stronger than anything life, others, or our bodies may throw at us.
It's okay to to tired. It's okay to be livid pissed. And it's okay to feel it all. Scream, fight, and claw your way through this dammed day. You are not alone.
You stand in solidarity alongside your comrads in arms. We are a force to be reckoned with. We are Spoonie Warriors.
#TrigeminalNeuralgiaType2 #TrigeminalNeuralgia #TrigeminalNeuralgiaType1 #CrohnsDisease #Leukemia #MyalgicEncephalomyelitis #Chemotherapy #RheumatoidArthritis #DegenerativeDiscDisease #PTSD #CPTSD #EDSAwareness #TraumaticBrainInjury #TBISurvivor #braintumors
I've been called lazy and made fun of for most of my life because I am not a morning person. I have very valid reasons for not being one. My Rheumatoid Arthritis hurts much worse in the morning hours along with high fevers until noon (autoimmune bullshit).
My Trigeminal Neuralgia and Occipital Neuralgia also hurt more in the mornings. I often wake up dreaming that a jackhammer is inside my head and that there's an electrified bear trap gnawing away inside my face and teeth.
It takes me hours to wake up and even become capable of movement. The methodical steps I have to take in my waking routine are strictly enforced. If I rush, I will vomit or pass out.
And then there's the CPTSD component. I don't have a night without some iteration of night terror, sleep paralysis, or nightmare. This leaves me exhausted, depressed, and anxious.
Essentially - waking up sucks.