This is just a reply I wrote to a friend on here tonight. It seemed so near to my situation I wrote back as it seems most of her fears and doubts mirror mine. So this is my general thought as of 4:22 AM(yay insomnia).
I could've typed this exact message almost to a T except replace father with mother except she is just dismissive and less helpful than ever. They complain when I'm on meds, I'm too relaxed(oh my god, not that). They complain when I'm not on them because I'm in agony and On a scale of 10 my body runs about 100. My mind races, anxiety is out of control. They bitch about the way I talk because if I'm in pain my mouth doesn't like to work as well and actually criticize me for not talking right. Or if my mouth is somewhat ok my mind is racing and I try to get all of the thoughts in my head out before they get lost and they of course complain about that too. It's draining. And I just feel like a burden, which I know I am, they just won't say it.
I don't even feel like I'm living life for myself anymore. I'm doing it for everyone but me. I want to be here for my daughter, but not like this. It wasn't so bad when she was younger but she knows what's up now. I try to trick myself in to staying positive but it's all really an act. It's been 14 years. I'm tired, retired from work at 32 so that was the only non negative thing I can say but it's not enough to live in any sort of comfort on. You get by, that's it. Is this really any way to live? I hope not. I know I sound negative a lot and am guilty of such at times but I've made the most of a lot too. Unfortunately those things are in the past but sometimes a nice memory can put a little smile on your face and give you just a little real hope you will find it again in the future. I still have things I look forward too today, they are just very different than they used to be. Like most people take for granted walking outside. hell, if I can walk outside comfortably it's a near miracle, especially this time of year.
But even if things seem bleak, keep trying. As for the medicine thing. QUALITY OF LIFE. Who cares if it takes 10 years off of my life if it can make the next 30 better. I'm sorry. That's just a horrible argument for me to hear. I'd gladly make the trade. But that's me. But then again if they would euthanize humans I'd probably go for it as there is no relief in site. My only hope is to get out of the VA care system and hopefully back to real practitioners who might actually care. But there are no guarantees there. The only guarantee is I'll go to my appt tomorrow and sure as the sun will rise nothing will happen. Then it'll be back to having to wait months in agony til my next appt where nothing happens. Wash, rinse, repeat.
I was at my best and most productive when I was on opiate therapy. I was in school and doing well, doing theater. I voluntarily went into the hospital substance abuse program not because I was abusing substances. But I was on like 12 different meds which was too much and I wanted to cut those down. Mainly because most were jut maintainers over the opiates and caused weight gain and general discomfort and feeling like a zombie. The opiate therapy was fine. It's not like I get anything off of it as I suppose someone just off the street would. It doesn't waste me out, probably puts me at most peoples equivalency of normal. It allows me to live my life. It's not to say it takes the pain away, it doesn't, but it makes living with it just a little easier. Maybe it justy makes me not notice it as much. Whatever, it works. And for some reason this option has been taken off of the table. I guess because it actually helped, who knows.
All I know is I go in for an appt in a few hours. I'm not going to be the passive, minimalist person. I usually am. I'm not going to tear the place apart either but something is going to change, TODAY.
I wish I could offer some helpful advice. Everyone reacts differently though. My first MVD knocked out the typical pain for a few years, but never really took away the a-typical. I don't know the general feeling on gamma knife but it was the biggest mistake I ever made and the one thing in life I'd take back if I could. It made things twice as bad. Hell, to even go back before that as bad as it was then would be better. Just keep trying and don't let these doctors give you a hard time. I've done it too long. They've got a new patient coming tomorrow. One who isn't willing to wait anymore. 14 years is enough. Do something. I don't care what. Please just try not to get where I am at, that is if you're not already there.
Wishing you the best, Matt
Ok, that was that. Now my questions. For anyone here. What helps you? And if it actually does how much does it improve your quality of life? If you are pain free I am so happy for you, I need the secret. Do most of you have any support system or just have to go it alone? I don't know anyone in real life, well that I could talk face to face to about things. I have so many questions for others who have this. I couldn't possibly write them all down or even recall them all now. I just wonder how others deal. Because I'm managing, but just barely.