Writing has always been my outlet. It’s how I learn, it’s my favourite way to communicate, and since becoming sick, it’s become a way for me to process the toughest of feelings. I never really planned on sharing my writing with anyone, though; that would’ve required being vulnerable and it hasn’t always been easy for me to be vulnerable. As a young kid, I wore my heart on my sleeve and the smallest of inconveniences would devastate me. I’ve always poured my heart and soul into everything that I do, which means that criticism can feel like a direct attack on my person. I grew up feeling fragile. I didn’t want people to know how soft I was on the inside, so I started putting up a tough exterior and asserting control over every aspect of my life. I thrived on people telling me that I seemed put-together and like I had everything figured out. I even started to believe it. My confidence grew, I became outgoing, and fragility seemed to be a thing of the past. Confidence and control don’t stop life from happening, though. My first run-in with life happened in the form of Trigeminal Neuralgia (hell of a form to run into on your first go). Over the last 7 years, it’s picked away at my confidence and control bit by bit. The life that I had so meticulously planned was no longer attainable. It’s also super hard to look tough when it feels like your face is being ripped off. I was back at square one.
Fragile. Frail. Weak. Vulnerable.
Although I’d love to have some childhood naivety and invincibility back, I figured out pretty quickly that my forced control and toughness approach was not going to work anymore. I definitely didn’t let go of it easily, though. I continued to compartmentalize my feelings and push my body past its new limits. However, my body fought back this time. Obviously, TN is a naturally degenerative disease in most cases, but I always wonder if I made myself progress faster because of my incessant drive to literally go against every recommendation my body sent out. It took years and a lot of counselling, displeased doctor stares, and full-on begging from my family, but I finally decided to give a little bit. I let myself be vulnerable and I accepted that life was never going to be the same again. It was the scariest, yet most empowering experience of my entire life. So, back to the writing piece – who wouldn’t want to share that moment? Being vulnerable with myself and my loved ones made me feel the strongest I’ve ever felt. Being vulnerable gave me a sense of purpose.
So, what was the point of that two paragraph intro? Well, I’ve fallen back into some old habits and I need to work through them. I need to be vulnerable with myself, my loved ones, and all the random Internet people that I’ve also come to love.
I’m not doing okay – physically or mentally. My face has hurt more in the last two months than it has in the entire 11 other months since surgery. I’m scared to tell my family how much I’ve been hurting, but I know they already know. My body feels like it’s trying to kill me everyday. My GP probably thinks I’m insane because I walk into his office every 1-3 months and say something like “it feels like my hearts going to explode, so that’s cool”. Neither I, nor my GP, trust my body to actually function properly, though. It’s a constant battle between “should we get testing for this” or “should we chalk it up to 7 years worth of meds and bodily degeneration.” The fear is that messing with my medication or doing a bunch of tests could send my whole system into a spiral. Basically, trying to get better could ultimately make other things worse. That’s where my most recent neurology visit comes in.
In my last blog post, I talked about possibly lowering my medications at the end of the month. I guess I should’ve focused on the word “possibly” a little bit more because it didn’t end up happening. It’s hard because that was really my only 1-year goal after surgery. Undoubtedly, TN is the greatest beast I face. However, the high dosage of medications I take to combat that beast come with their own impairments. I view my medications as walls that separate me from having full access to the brain I’ve always been so proud of. My memory, concentration, and critical thinking ability have defined limits now. When I met with my neurologist, she said that I had to work on accepting that I’ll likely be on meds for the rest of my life. Although that’s something I’ve tried to work through a number of times, it never gets easier to hear out loud. It brings back the fight in me, but not just in the healthy way that it should. It makes me want to fall into those bad habits of asserting control and pushing my body past its breaking point. I’ve been recognizing those behaviours a lot in the last couple of months. I don’t ask for help when I need it, I don’t pace myself when I do things, I don’t allow myself adequate time to rest, and I won’t always take pain meds when I need them. Unless you follow my mom on Facebook, you wouldn’t know that I ended up in the hospital last month. It was the worst flare I’ve had since surgery. I let it build for weeks and only took pain meds when I knew my family would take me to the hospital if I didn’t take them. I would sit there sobbing and still try to convince myself that it would go away eventually. However, it didn’t go away, it just got worse. I finally allowed myself to go and get the relief I deserved, but the Dilantin infusion didn’t give me the quality of relief it’s given me the past couple of times I’ve gone since surgery. Perhaps if I had gone in weeks before that, I would’ve bounced back and felt a lot better than I do now. There’s no sense in “perhaps”, though. My hospital trip was 3 days before my neurology appointment. I don’t entirely know why I thought I would still be able to lower meds after all of that, but I was surprisingly taken aback. Which leads me to my mental health.
I’m not ashamed that my physical illness has affected my mental health, but I have a really hard time talking about it. I fear that opening up about my mental health will cause people to take my physical health less seriously. How does one walk away with their mental health unscathed after all of this, though? Being told that you’re going to be in increasingly more pain for the rest of your life with no available cure isn’t just something you cope with gracefully right out of the gates. Each year, it gets harder and harder for me to accept that this is my life. That I will never get the last 3 years of my childhood back. That I may never go back to school or work. That I will watch the world around me continue on, even if I’m stuck living as the fragile 15 year old girl that just had her world turned upside down. I’m constantly telling myself that I need to be grateful for the progress that I’ve made. And don’t get me wrong – I am grateful. However, sometimes when I’m overwhelmed with pain and there doesn’t seem to be an end, that progress doesn’t feel good enough. I get caught up between accepting that this is my life and wanting and deserving so, so much more for myself. All grace and elegance leaves me in those moments and instead, I just want to punch, kick, and scream the pain away. To be honest, that’s how I’ve felt for the past couple of months.
I feel unsteady. I feel like I’ve lost my sense of purpose and use; like no matter how much I do, it’s never enough for me. I feel like the black sheep amongst strangers, friends, and family; like I don’t fit in anywhere. I feel so far behind compared to my peers; like I’ve lost the last 7 years of my life and like I’ll never be able to catch up now. I feel scared of the future; like I’ll live in fear of my own body for the rest of my life. I feel like I shouldn’t even try to enjoy things because it could all be taken away from me at any moment. It’s hard to keep trying when you’re not getting any positive reinforcement from your own body. You start to associate the things you love doing with the pain you feel after doing them. There is no “give” when it comes to Trigeminal Neuralgia – only take. I’ve always tried to make the best out of a negative situation, but it’s so easy to become discouraged. However, even though Trigeminal Neuralgia takes, I believe I still have something to give.
When I made the decision to be vulnerable, I also made the decision to start growing, even if I was planted in a dark place. I guess I feel like I’ve stopped growing recently. I was making these huge progressive strides after surgery and now I feel like I’m barely inching along. My brain is telling me that I need to be doing more, but my body is telling me to slow down. My family is telling me to slow down. My doctors are telling me to slow down. My neurologist straight up told me that if we move too fast, she doesn’t know if she’ll ever be able to get me back to a stable place. So, maybe I need to change my definition of growth. *Cue Cheesy Analogy* Maybe I need to focus on the roots instead of the flowers. All in all, I think allowing myself to be vulnerable and being able to actually admit that I’m not doing okay is a good first step. So, thank you for always letting me be vulnerable.
I love the heck out of you guys,
Thanks for writing this, I needed to read this. Although I don’t have TN, I do have nerve damage after a dental procedure that took me on a rollercoaster this year. A lot of the thoughts you are speaking about are ones that I’ve had this year, which has been really rough. You inspire me.
Wow! This made me tear, as it also made me feel that I am not alone. I recently got diagnosed w/ GPN (Glossopharyngeal Neuralgia) 3 weeks ago. living in pain since December Seeing multiple doctors and specialist, taking anti convulsants, opioids nsaid, and mri after mri. I am 30 yrs old and I feel like my life has been taken away from me. I feel just as you do, Some days I’m ok most days I put a front for my family and my lil girl. I am scheduled for a MVD and I pray it works and cures my pain permanently. You are so strong, I admire your strength and your truth, vulnerability as well as your feelings. I will put you in a prayer tonight. You are love and light! Don’t let this define you! You are still so young. Don’t give up! I won’t! God bless you , don’t lose hope and may God lead the way. May he give you , me and everyone else dealing with neuralgia(s) and any sickness the strength To pull through. You are not alone. Please Stay positive And thank you for this ❤️