HNPP: My story by Ms J, Eu.
I was diagnosed with hnpp back in 2005, after many years of going back and forth to the doctors (so many ive lost count), been accused of lying, and almost giving up, finally a doctor, recognized the symptoms and sent me for the test, my broken back, had always been a bit of a red herring when it came to my nerve pain, and doctors, failed to understand why, I was still in pain, even after 2 surgeries.
In 2014, I was diagnosed with painful peripheral neuropathy, finally an explanation to why, I was suffering so much with burning sensations, and nerve pain, from the top of my head down to my toes, something that I live with on a daily basis.
Over the years, I have had many hospital visits, through loss of power and feeling in my legs, to a migraine that blinded me, and closed my throat, I have days where im so exhausted from being in pain, or just that general feeling my body is fighting against me, and stopping me from doing what I love.
This disease is crippling, exhausting and frustrating, however! It doesn’t rule my life. Yes, I need to make sure, I have comfy seats, and not sit on my ass for too long, I have to take care when using a computer and traveling, the upside is, I always get a seat in a bar. But I control it, I wont let it control me, I actually surf 6 times a year, not just little waves on the beach, but have gone out to pipeline in Hawaii, steamers in Santa Cruz. I climb, yes rock climb! Ok, I am not allowed to lead climb, but I do go up, I fight with the numb fingers, and take the consequences of 6 hours surfing, or paddle boarding, mountain biking, all of which I do on a daily, weekly basis. I live my life, I don’t let it stop me, yes at the end of the day, my body is tired, and my nerves are screaming, but I am alive, and I feel alive, I don’t stop living, just because I have a progressive disease, in-fact it makes me more determined to live to the fullest, as one day I might not be-able to, and too be honest, if I complained or felt sorry for myself, every time I suffered as a result, then I would wind up very lonely, very bitter, and I’ve let hnpp win, and that for me, will never happen.
Life does go on, yes it sucks, it really does, but mind over matter, has more positive effects than the, I feel sorry for my self scenario, I’m 37, and I wont change the way I live, because im supposed to, anyway, no better way to forgive your body, after an epic day surfing.