For years my goal in life was to avoid pain - the pain of ATN. I got in the habit of saying NO to everything in life. I was in fear of the potential of experiencing pain from an outing or exercise. I'm starting to venture out and say YES; to do more and leave that fear behind.
But I want to hear from you. What do you do, what lessons have you learned. How have you been an overcomer and to embrace life?
Before successful surgery, I wore lidocaine patches on my face, even in public, even if I looked not so pretty.
I have pushed my limits when there was wind, but my 3 doggies wanted a walk sooooo bad..... I did it for them (with a scarf on my face of course) - sometimes with face patches.
It took me 1 year of meds - ICK - took my IQ, took my career to HOLD Button......
Had PTSD, had depression meds, before, during and after my surgery.
I became a newlywed on Trileptal -- that was not ME! That was hard!
TN took away my first two years of this brand new marriage and pushed us to the brink...... that has passed.
Mostly pain free, but i'll never be 100% pain free - --- there is no cure --- but have come a long way!!!
Even if NO pain for 4 months, still pack my lidocaine on any trip we go on. Will do it forever.
If I feel a jolt, it pisses me off, then it goes away, then I get back to life!
Its all I can do.
Besides come here and give hope to others. : )
bah, i deal with this health issue, and indeed any others I have by the one day at a time principle. Seems our grandparents knew something we often forget. years of pain seems unbearable. Switching to day to day coping seems doable to me. Also, boring as it sounds, I do try to stay positive. I read a book about leprosy, which many had thought incurable. Then along came an easy viable treatment. I fervently hope that will happen for us :)
In my twenties I read a book called “Feel the Fear and do it Anyways” back then “fear” for me was more like stepping out of my comfort zone, or doing something, deciding on something and not letting the “fear” of failure deter me.
NOW fear has a whole new meaning… ; )
I have to agree with Jackie that living moment to moment has really helped me with fear issues in regards to the pain.
I’m currently doing something odd ( at least my doctors and family think I’m crazy) but I’m desperate to still “try” to find a balance between pain & meds and an ability to function. So I’m reducing one med in order to add more of a newer med.
FEAR is very real, I’m experiencing a high level of “drugged up-ness” and high levels of breakthrough pain. BUT I have to try and change things up knowing the consequences, it’s not easy and I’m struggling but I’m hoping for a good outcome as a result.
If I don’t try I’ll never know, there’s a little faith mixed into facing the fear…my options otherwise are slim to none.
I feel a little empowered as a result too. Which means a lot when much of my life has changed so much as a result of my TN in recent years.
I think it’s a conscious choice and sometimes I do say “no” and I’ve learned that’s ok, I’m no hero, nor do I enjoy the horrid pain of TN.
Great discussion topic, thanks for starting it!
(( hugs)) Mimi
When I read your question it really made me stop and think. I agree with what others have said about taking one day at a time. My atypical TN started 2 years ago so I'm new to this compared to some here. I'm trying to maintain a somewhat "normal" life while being more protective of myself, if that makes sense. Some days are better than others but I stay hopeful.
Yesterday I slipped on ice and fell while I was outside with my dog. I guess the combination of frigid cold air and the jolt I got from the fall really set off the TN. This morning the thought went through my mind ... how can I live like this for the rest of my life ... but I pushed it away immediately. If I allow myself to go down that road, then the fear kicks in. So I'm hoping tomorrow will be better. I read what people post here and it gives me strength knowing I'm not alone with this.
I am learning that I can have pain while alone at home or I can have pain while in the company of friends. I choose life! That being said these days for me it is the balance issues that keep me from doing things I really enjoy. Going for walks alone, dancing, or even just vacuuming the stairs. It is all about silver linings for me.
Thank you so much for sharing your journeys. I am encouraged by reading them and proud of YOU. When we have suffered unimaginable pain, often misunderstood and even disbelieved, it is hard to keep going with a positive attitude. For the most part I am well managed but sometimes I slip back into "when will the shoe drop" mode. I'm motivated to live life more fully when I read what you have shared. Here's to a good day for all of us!!