Living with TN is hoping that an increase in pain is a temporary blip – a change in weather, a medication adjustment, a prolonged source of stress – and not the predictable outcome of progression that my body seems to favour. The logical side of my brain considers all of these possibilities. I know that fall brings barometric pressure changes, cooler weather, and more wind, all of which are known to trigger and intensify my pain. I know that I’m going through a medication change. My body has been trying to cope with various titrations and the introduction of new medication for 6 months now. Finally, I know that I have been under immense pressure lately. If the normal stressors of being chronically ill in a global pandemic weren’t enough, I took on multiple huge projects for awareness month. Despite all of that logical reasoning for why my pain could be so bad lately, my anxious tendencies have turned up the volume and the fear of progression has crept in and consumed my mind.
TN is such a uniquely difficult thing to cope with. I think the hardest thing for me is finding the balance between understanding the realistic situation ahead of me and having hope. Every time I go to the doctor, I’m reminded that I will likely have this disease for the rest of my life. That I will constantly be fighting to find the right medication balance. That I will likely need more procedures and surgeries in the future. Even after 8 years of those outcomes being hammered into my brain every 3 months, it’s never gotten easier to hear or accept. I’m not convinced that it ever gets easier to hear or accept that this monster of a disease that has robbed me of so much will continue to do so for the rest of my days. I desperately want to be the optimist and I think having hope is imperative to successfully living with this disease, but even hope requires balance. In the beginning, I think a lot of us tell ourselves, “my case will be different, things are going to work out for me, and this is going to get better”. While that intense level of hope can help us absorb the initial shock of a scary prognosis, it’s rarely sustainable, and those unrealistic expectations can set us up for failure.
I went into my first surgery with pure, unadulterated hope. I didn’t prepare myself for the possibilities of complications or failure. So, when those things happened, the only thing holding me together – the blind faith that everything would just be okay – was gone and I had no coping mechanisms to fall back on. It would take years of therapy, medication, and work to get back to a stable place, but in that meantime, I had to go into survival mode. For 4 years, I just went through the motions of life. Of course, there were times where I was happy, I made connections, and occasionally left the house, but I spent every moment in fear. Paralyzing fear. I watched my body get sicker and sicker every month. I watched the amount of medication and the hospital visits continually increase. I watched my loved ones have to divert their energy from the things they loved to a person they loved who was falling apart. It killed me inside to feel like this disease was taking from them, too.
So, when it came time for my second surgery, I knew I couldn’t make the same mistakes. I viewed it as my opportunity to start again – a recovery, a rediscovery of self, a rebirth. I’ve spent the last 2 years of my life loving harder than I ever have, genuinely laughing at every silly thing the world has to offer, and finding purpose in the darkest of moments. I’m happier than I’ve ever been, more in love than I’ve ever been, and more supported than I’ve ever been, and yet, that fucking fear is coming back. The balance of realism and hope that I thought I was mastering – the head in the clouds, feet on the ground approach – has been thrown off by the one thing I can always count on in my life:
Instead of slowing down, having a rest, or showing my body an inkling of respect, I’ve pushed harder than I ever have because I’m afraid that this disease is going to replace my progress with progression. That it will slowly, but surely, pick me apart and take away the love, the laughs, and the purpose piece by piece. I’m terrified because I don’t know how to stop that from happening and I feel like I’m just hoping that my spite for this disease will scare it away. I feel like I’m never doing enough. So, I throw my energy into awareness activities because it feels like the only way to physically show that I’m not sitting idle against this invisible, internal foe. However, after fighting so hard for months on end and unsustainably overextending myself, I don’t know how to slow down. I don’t know how to let myself relax without feeling like I’m giving up or I’m lazy or I’m letting someone down. I’ve pushed my body through unbelievable pain, nausea, syncopal episodes, and fatigue. My body and my loved ones are yelling at me to stop, but my brain tells me that if I rested every time I felt bad, I’d never get anything done. Even if I did rest, there’s no guarantee that I’d feel up to doing something later. This cycle of disconnect between my body and brain repeats over and over again until I break. I don’t want to do that anymore.
It’s natural to want to hide my physical and emotional reality from the people I love because I don’t want anyone else to feel this overwhelmed. The fear of burdening people does not always present itself in the obvious sense. Rather, it’s in the “I’ll be okay’s”, dissociative interactions, angry snaps, and late night breakdowns. It takes so much extra energy – energy I don’t have – to pretend that the weight of this disease is not crushing me. The irony of it all is, my people see right through the bullshit. I’m simply wasting energy I could be spending more wisely. So, that is how I’m proposing to rebalance myself. Instead of spending energy on tough girl acts and burdensome worries, I’m going to try and direct that energy towards taking care of myself and communicating my needs more effectively. Because I know it’s much more of a burden to take care of a reticent, miserable person than it is to take care of someone being honest about their struggles.
The truth is, this disease is heavy and it often feels like it gets heavier as time goes on. Just when you think you’ve mastered a coping mechanism and found a balance, you’ll be forced to adapt, relearn, and readjust. That’s fucking frustrating and it’s okay to feel that frustration. It’s okay to feel sad and grieve the losses. It’s okay to feel the fear that this may not be a temporary blip. However, we don’t have to feel those feelings and carry all of that weight alone. We don’t have to let frustration, sadness, and fear be the only things we feel. Despite their deafening volume at times, there is also so much community, beauty, resilience, strength, and hope in this world. This awareness month has made that infinitely clear and I’m choosing to put more thought and energy into those feelings, in order to tip the scales. Balance takes constant maintenance and practice and I know that it will take time to find stability again. In the meantime, I’m going to try and treat my body with a bit more respect, ask for help, and focus on all the wonderful things that were accomplished this month. I know it will be worth it in the end.