Soooo.......Seems like I've been feeling quite miserable for some time now....Yes, I'm still taking LDN. Every day it's becoming harder to find a reason to join the human race. (If anyone has any helpful suggestions about any of these complaints, feel free to fire away. I'd like some kind of resolution to them if possible.)

First of all....bladder issues. I'm taking the extended release form of oxybutynin and it doesn't seem to be working. By the time I realize I have to "go", it's too late. When sleeping, forget it. Getting out of my recliner, my bed these days, into my powerchair, getting out of the powerchair, sliding my feet backwards to the 'throne', (my legs won't move forward at all), takes forever so why bother?? This problem has taken over my life, afraid to go anywhere. Does anyone know anything about the supra-pubic catheters that are implanted directly into the bladder? It sounds awful, but I'm at that desperate point.

Then there's the debilitating nerve pain 24/7. I've had pain in the 'buttocks' for over 13 years due to the sciatic nerve. Every doctor has simply brushed it off as nothing. The spasms in various parts of my body are excruciating. It feels like every nerve ending is on fire and so far, I haven't found any pain meds that touch it. Medical mj isn't legal here in Pennsylvania, but I'd sure try it if it was.

Then the leg spasms and overall stiffness. OWIE!!! It takes forever just getting my feet up on the footrest of my powerchair since the legs won't bend like normal legs do until the spasms subside. Every time I move the slightest muscle anywhere, the total body spasms begin. Tizanidine (Zanaflex) isn't doing much to help.

Fatigue has been bad also, but if I try to go to sleep at a "normal" time, I can't sleep. A couple times I've had a glass of milk before going to sleep in the recliner, and I wake up with the glass and milk in my lap. Same with trying to read, watch TV, etc.....I fall asleep without realizing. Good thing I no longer drive!

As most of you know, I live alone with my little dog, Tasha -- a Bichon Frise, so the usual daily chores are my responsibility. I eat one meal a day plus snacks, have to stand up/sit down many times working in the kitchen, hanging on for dear life with one hand, trying to reach with the other. With more pain, it's getting harder to stand plus my balance is completely shot. My balance center was destroyed early on. My friends are here one day a week to clean, grocery shop, pick of prescriptions, take Tasha to the groomer, etc. It's getting really difficult and frustrating trying to do all these things.

I thought I had a handle on this lousy disease, but as time has gone by, I find myself becoming angry at it, crying hysterically from frustration and questioning my existence. What in the world could the purpose of this be? It doesn't seem to me the Lord wants me to waste these 'so-called' golden years. Guess I've hit one of the walls that appear every so often. I don't mean this as a 'poor me' whine, even though it sounds like one, just venting to those who understand. Nobody around here understands (family) and at the moment, don't even have a neuro since mine retired. There's an extreme shortage in this area. I just can't stand living like this........I HATE THIS DISEASE!!!!