What It’s Like When Your Condition Progresses

One of the most anxiety producing things when you live with a progressive condition (like Trigeminal Neuralgia) is the fact that it will inevitably progress. You’re always wondering how and when. Well for me, that time has come. Since about may of this year, my pain has become more intense and harder to control. For the last few weeks, it’s gotten exponentially worse. I’ve even had one ER trip because I just couldn’t handle it and couldn’t control it. It’s been years since I needed to go to the ER for pain control. At this point, my daily base pain level is about a 6/10 and I regularly get spikes in the 9/10 range. Sleeping is hard, eating can be hard, functioning can be hard. I’m about maxed out on medications. I’m planning to go back to my neurosurgeon and see what surgical options I have (I would like to do an outpatient procedure called a Percutaneous Stereotactic Rhizotomy. Being outpatient, it would fit in easier with my schedule). Unfortunately, due to covid, I have to wait to see him (as he works at a major covid hospital).

Dealing with the progression of pain is really hard! Not just physically, but also mentally. I have not had pain levels like this since before my operations in 2015. For that reason, I have started seeing a pain therapist again to help learn some new coping strategies and deal with the feelings that arise. She’s great! I think it’ll be very helpful! I’m also looking forward to working with her to overcome some of the fears I have about my pain scaring non chronic pain friends away. That’s something I have been struggling a lot with lately.

I’ve found keeping myself busy tends to help also. Being in school and training to be a crisis counselor for the Crisis Text Line are good ways to keep my mind occupied and distracted from the pain. Obviously there are some points where that is just impossible and those are the hardest, but in general, if i’m a 6-7.5/10, it usually works. Distraction can be a wonderful thing.

It’s inevitable when you live with a progressive condition that it will eventually progress, but it still doesn’t make it any easier. The best thing to do is just work through the feelings and make sure your medical team is willing to work with you to try and help you as best they can.

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