The upside of no longer working is that I can sleep until 10 or 11. I am not falling asleep until about 3 or 4am and my devoted husband is getting up with my kids. Again, I realize the terror and sleepless nights are yet to come when I full come off the last 1mg of valium. I restart my taper January 1st because I needed a breather from the terror and pain I felt 6 weeks ago. I got neurontin on board and it's helped me function. Don't judge me. I needed desperately to support my system to get off this final bit and I was in a fetal position in horrific pain. Believe me, I want to be med free more than anyone on this planet earth. But when there is a medical emergency like Akathesia and severe unrelenting pain I felt I had to do something. I didn't think being stoic or following the advice of BB was the way to go. I know what my body and mind can handle and I could not handle that for an extended period of time knowing I still had potentionally 3-6 mos to taper and deal with acute. I know I might have to endure a shit ton of pain in order to break free but my doctor scared me when he said " I don't know if you are going to make it" and that actually staying in pain could cause a larger immune issue like RSD. With that, I was sold me on the neurontin. I fibbed and took 3x less the dose than he wanted me to take. And it worked. I trusted MY NERVOUS system not someone who is randomly telling me a number to take out of a book. No way I could have stayed like that for 4-6 mos and more when I hit acute. I know so many that end up with no physical sx whatsoever. They have looping thoughts etc etc, but they don't hit acute. I think those that have kindled and been on/off and those with sensitive nervous systems may not be so lucky. I don't understand why what is happening is happening to be honest. I keep saying that I wish I could be put to sleep for six month and wake up so that this horror is over. It's not like I am asking the universe for a coma or anything, I hope you get my drift. Just make it end.
Today was a better day. I read pieces of Matt Samet's book Death Grip in the wee hours of the night. I talked to Geraldine Burns last night and what a woman! I love her! She was so warm, so lovely, so reassuring. She assured me that many of the people on her website healed. A french woman named Madelon who ended up in a asylum. Healed. The tragic looking guy Scott on the As Prescribed trailer. Healed. A woman Cindy who had tried multiple times to get off. Healed. A farm woman named Tammy. Healed. Everyone healed. And even if it's not full healing., I will accept some version of healing. What I felt 5-6 weeks ago and what I feel in my CNS on a daily basis--I really wonder. Can this really heal? I feel so damaged. Fragile. Burning. On Fire. Prickling. Beyond sensitive to stress. My guts are a wreck. But they all healed. What's the secret? Time. Everyone says Time. And genes. I say genes. But I have no proof.
Fears (here we go again)
1. That I am different and I will never heal because of my underlying health issues and my constitution in general. And that this will trigger some bad genes to flip on-this level of stress.
2. I will miss out on years of my kid's lives ( I have already missed close to two)
3.The akathesia will never end and drive me insane
4. We are going to have to move god knows where bc I can no longer work
5. That I will never be healthy, strong and happy again
6. That under all of this I really have lyme disease (the lyme docs are saying that- I am in denial)
Ohhhh so many many more.
What scares me also is the lack of confidence that others have in my ability to do this. My one doctor felt like I might not be able to and that it wasn't a good idea, Another friend said maybe this is the new "normal". Hell. Fucking. No. If you knew what I felt inside you would know I cannot live with this as the new normal. We all have to adapt.
My last "Dark night of the Soul" lasted 8 years. I had pain for 8 straight years that took up the latter part of my twenties and early thirties. I was dying inside. My soul was dying. And in 30 days, almost like magic, it lifted. I was like a kid in a candy shop. When you have been sick for that long it's hard to believe you will ever be 'normal' or 'well'. I adapted, yes. But I could function. I worked. I did yoga. I dated. I built a business. I did it in severe pain. Yes, it's true. It started the minute I woke up until the minute I went to sleep and often kept me awake. And I would take that in a HEARTBEAT compared to benzo terror and akathesia. My body MUST heal. It must learn what NORMAL is. And normal doesn't include this kind of pain or suffering. I refuse to believe that.
Geraldine said something interesting. She said you know what all people going through this need? They don't need to be told that they have trauma or their inner child is wounded. They don't need to be told that this doesn't exist and they've never seen this before. They don't need to be told to snap out of it and do mind over matter. They don't need to be told they are wallowing. Or they must have some other medical condition (sometimes this does make it harder as in my case). They don't need to be told they should get back on for life. They don't need to be told they will never get well and what their experiencing is an anomaly. If it's such an anomaly then why are people putting up You Tube videos? Why is Geraldine and Bliss and Jennifer's work as important as it is? Why would thousands and thousands be complaining about PAWS only to be told that after 18 mos it's something else. Listen. Listen to your patients.
You know what people need to hear??
You will heal
This gets better and this is normal
That's fucking it.
I am going to say it over and over again because we need to hear this over and over again.
Support your loved ones. Be gentle. Bring them food, rub their feet, call their friends to come over, reassure them. Day and night and day and night. Over and over and over again.
One day it might be you that needs to be heard, that needs to be listened to. Doctors especially. Learn to listen and learn to LEARN from your patients not your textbooks. Believe them. They are telling you THEIR truth. Hear us.,
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.