For those that are completely disabled

Are you making arrangements for the future in terms of health care and financial power of attorney, and other practical steps to protect yourself? I am 30 so have never thought about this at a young age, and nobody else in my family is disabled to the extent I am. So there's no source of information. I know people on here tend to respond with "you will heal, etc" which is a nice encouragement but it's not realistic thinking considering how long and severe the damage is in some cases. Some people may never heal to a functional level. If my insomnia, stress tolerance, derealization, phobias, paranoias, back pain, executive function, anger, rage, etc etc dont give way, I will never be able to hold down a job or even a relationship. I live second to second dealing with symptoms and coping. People that go through withdrawal and can hold down a job and even have a family won't think the way I'm thinking and cannot relate because they ARE able to function despite symptoms. I see people on here posting about their children, spouse, job, etc. so they at least are capable of creating a safety net. I'm single and the only child, no trustworthy friends because the nature Of my previous job required me to travel around a lot. I have cousins but not close with them. My parents are my source of everything right now but one day they will leave me.

 

I guess my question is, knowing my specific situation, does anyone have practical advice on how the American system can help me in the future, and what I should be doing to protect myself in the long run? Do people on here have advice or experience on setting up power of attorney? If no trustworthy family members in the future, does a social worker typically take on this responsibility?

Hi

 

Just curious.. why do you think you might not fully heal and be left with multiple debilitating symptoms?

 

Why is your brain different to everyone else’s?

 

You’ve only been off all brain altering chemicals for 2 months... this is very early days...

 

I've been off of benzos  for 8+ months. Nothing has changed for the better. Mirtazapine didn't touch my symptoms for better or worse so I had no problem coming off of it.

Also, if you do really thorough research on this forum, there are many people who don't fully heal, and on the contrary even get worse over time. There are folks in the protracted group who only post once a year because there's no point anymore coming to this forum. We don't know why this is the case but it is the harsh reality. I don't know which group I fall into, but based on the past 8 months, the trajectory tells me I would be thinking rather wishfully and naively to expect a full recovery. I am still DOING things right - eating healthy, walking, distracting. But what can I do when my body and brain is not responding?

PTSD, your so young. Try not to think about the future right now. Live in the moment. Believe me, I know it's hard and I've only been off 4 months and symptoms are hitting me big time right now but just try to have some hope. Just keep busy.

PTSD, your so young. Try not to think about the future right now. Live in the moment. Believe me, I know it's hard and I've only been off 4 months and symptoms are hitting me big time right now but just try to have some hope. Just keep busy.

 

Thanks 76, but my parents are not young and I rely on them 100%. Would love if anyone has advice ôn my original question

PTSD, your so young. Try not to think about the future right now. Live in the moment. Believe me, I know it's hard and I've only been off 4 months and symptoms are hitting me big time right now but just try to have some hope. Just keep busy.

 

Thanks 76, but my parents are not young and I rely on them 100%. Would love if anyone has advice ôn my original question

So sorry. I hope you find some answers.

I do tend to agree with you Miracle. At 2 years off plus 2 strokes caused by bwd i think i would have to be in la la land to expect full recovery. Some improvement yes, full recovery no.

Nothing wrong with making plans ahead of time (at any age) in the event you are no longer able to manage your own affairs. (one car accident can change your life at ANY age).  Probably the best way to do this is in the form of a "Living Trust". Estate planning attorneys can do this.  A living trust obligates whoever you designate as your trustee(s) to carry out your wishes (which you set forth ahead of time)  when you are no longer capable of doing so.

 

This is different than a will.  The whole idea is to keep any governmental agency from making those decisions for you (you DO NOT want some bureaucrat making critical decisions about your health, welfare & finances) Yes,  it cost money to set up a Living Trust  but it is money well worth spent.  A Living Trust puts checks and balances on what decisions any one person can make on your behalf when you are no longer capable of managing your own affairs.

 

If it wasn't for my living trust, my daughter probably would have asked that I be kept in the Psyc ward for my

own protection. THIS IS NOT WHAT YOU WANT TO HAPPEN.  A living trust bypasses probate if you have any assets and puts YOU in charge of your life instead of some bureaucrat.

 

By the way... you mentioned setting up health care & financial powers of attorney.  A "Living Trust" covers all of those aspects.... and MUCH more!

 

Finances:

 

I am young and a part of my income comes from the authorities like a pension because I am officially disabled and so sick I cannot work full time.

Its not much money but I need it.

I had to do that during my taper because I could not work any more. I did a lot of research, hired a lawyer and did what I had to do. I would say, get as much information about the options given in your country, get support to fill the formulas for the authorities, inform yourself how to behave if doctors have to find out "how" sick you are (how to present yourself, how to answer to questions, and so on). The process in my country is exhausting and I had to fight for it a long time, so its a good idea to inform yourself and prepare. In my country you also need lots of documents and prescreptions and hell ... it was a nightmare, really. They first rejected and I had to try again. Had to study the laws a lot, too.

 

If you do not need the option later, it is very easy to tell them, you do not need the support anymore.

But be aware that you might have to see doctors you do not know and they would ask you 1001 questions you would NOT like in order to find out if you are faking it or not. This part of the process I found really really embarrassing. But if your country offers this solution, I would start collecting information or just see an expert for the process to get an overview. These experts normally can tell you if you have a chance at all, by the way.

 

In case you are unable to manage your own things:

You are very very early in Withdrawal. But if you want to think about that, why not.

In each country you can make a patient decree, which says clearly "in case I collapse I want these helpers - or not" or in case you die, how much do you want them to try in order to save your life or do you refuse to be treated with some meds and so on.

Of course you could also fill out the paper which claims if you want to be an organ donor or not, how you want to die and what should happen after your death.

In case you are still alive but not able to manage your personal stuff, you can apply to get a personal assistant, a care taker - there is a solution for anything, so I would find an organization to give me advice for all these options.

 

 

 

Regarding benzo wd I would not focus on this solution on high priority, you know. As I said, early withdrawal! And you just stopped mirtazepine, right? And you still have parents who support you. I think when it comes to the money, okey, get information - but the last point... just wait it out.

I do tend to agree with you Miracle. At 2 years off plus 2 strokes caused by bwd i think i would have to be in la la land to expect full recovery. Some improvement yes, full recovery no.

Hi Southern. Just out of curiosity , do you think you won't recover because of the strokes you've had or because of the withdrawal. I know you said that your strokes were caused by Bwd. Just curious.

I think i will get some improvement but because i have brain damage from the strokes (2nd one more than the first) obviously the area of the brain that has died means that my cns will be more fragile and more prone to setbacks. Since the last stroke 3 months ago my wd sxs are worse than acute. I lost my vision in this last stroke so yes i am permanently disabled from bwd. Dr's agree with this.

Also, if you do really thorough research on this forum, there are many people who don't fully heal, and on the contrary even get worse over time. There are folks in the protracted group who only post once a year because there's no point anymore coming to this forum. We don't know why this is the case but it is the harsh reality. I don't know which group I fall into, but based on the past 8 months, the trajectory tells me I would be thinking rather wishfully and naively to expect a full recovery. I am still DOING things right - eating healthy, walking, distracting. But what can I do when my body and brain is not responding?

 

I don’t know of anyone who is permanently damaged by Benzos.

 

Why are you hanging out in the protracted group when you are only 8 months off benzos and 2 months off Remeron? I don’t understand. Surely you want to believe you will heal?

 

I’m not going to comment any further now as your posts are not something I want to feed my Benzo brain with, it already has enough material.

 

Wishing you all the best ❤️

 

How many people do you personally know, tweed? I don't know anyone who died from the flu, but the flu kills people every year. I have been emailing someone who has improved after 20 years off benzos, but not healed, and can still only function minimally at home. Just like every other illness known to mankind, people recovering from benzo damage ranges to those who are permanently affected, affected for various duration, improved significantly, minimally improved, healed, or worsen over time. This is due to various unknown reasons: genetics, duration of benzo taken, which benzo was taken, sporadic or daily use, taper, and luck. I don't need to hang in the protracted section to know this, just read through the success stories will give you an idea. Several "SUCCESS" stories stated they still cannot work, have insomnia, cognitive impairment, but posted it as a success because they are not suffering that extremely anymore. This is success to them, but not full recovery. Sorry if my posts are disturbing to you, but I am being honest and realistic.

Thank you topofthebotton and marigold!! I will respond more thoroughly tomorrow as I am new to many of these terms both of you mentioned. This is very helpful. I feel like I can be in control of some matters if things are to go further south in my family. My uncle and grandma is sick too (dads brother and mom) so my parents really have a huge load. Something bad may happen anyday and I want to be able do what I can to protect myself. I think even getting a personal assistant or someone to help with groceries or cleaning even now will be helpful.

I do tend to agree with you Miracle. At 2 years off plus 2 strokes caused by bwd i think i would have to be in la la land to expect full recovery. Some improvement yes, full recovery no.

 

You're a true warrior star. We still have to have hope that things will improve to the point we can tolerate. Maybe I will write my success story at point. I am truly not even expecting a miracle full recovery at this point. I know how severely shocked my cns and entire body was.

 

Are you making arrangements for the future in terms of health care and financial power of attorney, and other practical steps to protect yourself? I am 30 so have never thought about this at a young age, and nobody else in my family is disabled to the extent I am. So there's no source of information. I know people on here tend to respond with "you will heal, etc" which is a nice encouragement but it's not realistic thinking considering how long and severe the damage is in some cases. Some people may never heal to a functional level. If my insomnia, stress tolerance, derealization, phobias, paranoias, back pain, executive function, anger, rage, etc etc dont give way, I will never be able to hold down a job or even a relationship. I live second to second dealing with symptoms and coping. People that go through withdrawal and can hold down a job and even have a family won't think the way I'm thinking and cannot relate because they ARE able to function despite symptoms. I see people on here posting about their children, spouse, job, etc. so they at least are capable of creating a safety net. I'm single and the only child, no trustworthy friends because the nature Of my previous job required me to travel around a lot. I have cousins but not close with them. My parents are my source of everything right now but one day they will leave me.

 

I guess my question is, knowing my specific situation, does anyone have practical advice on how the American system can help me in the future, and what I should be doing to protect myself in the long run? Do people on here have advice or experience on setting up power of attorney? If no trustworthy family members in the future, does a social worker typically take on this responsibility?

 

I have exactly the same symptoms you mentioned, and I’m working since two months ago, with only 3 or 4 hours of sleep every day, with terrible dp/dr and back pain 2... but work is a great distraction

Also, if you do really thorough research on this forum, there are many people who don't fully heal, and on the contrary even get worse over time. There are folks in the protracted group who only post once a year because there's no point anymore coming to this forum. We don't know why this is the case but it is the harsh reality. I don't know which group I fall into, but based on the past 8 months, the trajectory tells me I would be thinking rather wishfully and naively to expect a full recovery. I am still DOING things right - eating healthy, walking, distracting. But what can I do when my body and brain is not responding?

 

I don’t know of anyone who is permanently damaged by Benzos.

 

Why are you hanging out in the protracted group when you are only 8 months off benzos and 2 months off Remeron? I don’t understand. Surely you want to believe you will heal?

 

I’m not going to comment any further now as your posts are not something I want to feed my Benzo brain with, it already has enough material.

 

Wishing you all the best ❤️

 

How many people do you personally know, tweed? I don't know anyone who died from the flu, but the flu kills people every year. I have been emailing someone who has improved after 20 years off benzos, but not healed, and can still only function minimally at home. Just like every other illness known to mankind, people recovering from benzo damage ranges to those who are permanently affected, affected for various duration, improved significantly, minimally improved, healed, or worsen over time. This is due to various unknown reasons: genetics, duration of benzo taken, which benzo was taken, sporadic or daily use, taper, and luck. I don't need to hang in the protracted section to know this, just read through the success stories will give you an idea. Several "SUCCESS" stories stated they still cannot work, have insomnia, cognitive impairment, but posted it as a success because they are not suffering that extremely anymore. This is success to them, but not full recovery. Sorry if my posts are disturbing to you, but I am being honest and realistic.

 

Why aren’t people who are over 10 years off and minimally functioning who are permanently damaged not banding together to bring awareness to this situation? They must have searched to all find each other for support.

 

I know there are others who have went thru severe BWS and understand this who have been asking those who are 10 years off to please come forward.

 

Because it's more complicated than that. Why aren't WE not banding together to bring awareness? We have more convincing power than the ones who are 10 years out because we have been more recently injured. But it's not that simple when even the medical community doesn't recognize this as an illness. We risk being labeled as having just mental illness, other illnesses, drug seeker, drug addict, etc. I mean even my extended FAMILY does not believe this is due to drugs and writes me off as just anxiety and insomnia and making a big deal out of things. Especially someone who is 10 years out, who is going to believe their case when even doctors don't?  How do you get the general public to believe when even the closest people don't believe? And why would one risk putting their face out there when the risk is greater than the benefit, for themselves and others? If 10 years from now im not recovered, I'll probably still hang out here from time to time, but I surely won't have the energy or support to go out there and make myself known to the world what's happened to me.

My neurologist is aware of it. He has said it can take 6 years or more for the brain to find a way to reregulate neurotransmitters.

 

He says I am so sensitised everything is in complete chaos.

PTSD Miracle.

 

Can I ask where you found this woman who has been off 10 years?

 

Also as you have only been off a short time why are you spending time frightening yourself that you won’t get better. The vast majority of people do.

PTSD Miracle.

 

Can I ask where you found this woman who has been off 10 years?

 

Also as you have only been off a short time why are you spending time frightening yourself that you won’t get better. The vast majority of people do.

 

He's a person in real life in my local community.

 

I don't keep track of the other protracted members who I came across on this site who come back to post once a year. But I can go back and try to find those threads if you'd like. But I didn't start this thread to convince others what I already know by spending time understanding this iatrogenic injury. Anyways even on the protracted group there are people 6+ years out posting that they aren't getting better and suffering. I'm not FRIGHTENING myself, im being realistic that I may not make a full recovery like MANY others, considering the extreme damage I sustained.

Well I have been severely disabled since 1996 from before any drugs and I should never have tried to get off because my body is literally crushing itself without them.

 

There is disability and there is disability.

 

If I could get back to a place where there was a bearable position to lie in, could enjoy food and feel full and not have constant akathesia that makes me eat, could feel body normally and was not terrified of the whole of material reality and all sensory input even if I was still housebound and unable to do much I would take that.

Pleasebehere, because it's a catch 22 scenario. That's why there's a protracted group on here, the members who are suffering for so long, years, come back and post on this forum and what does that do to people who are only a couple weeks or months out? If they think they will be suffering for that long extremely, they might make unthinkable decisions. They can't handle the truth. People early on dont for WANT to believe there is even a possibility that they won't heal. But the possibility exists, just like any other forms of brain injury.

But I recently read a post on the protracted where a member said they waited and waited for years only to make little progress. He/she wished he would've made arrangements for his family and life earlier and not wasted all those years waiting for something that never happened (a full recovery).

It's likely I'm not going to heal tomorrow. It's likely I'm not going to heal in a month. Especially when symptoms have been constant. Days turn into months turn into years. So I'd rather be proactive in the things I can control, because I don't have control over if and when my brain will recover.

 

Well I have been severely disabled since 1996 from before any drugs and I should never have tried to get off because my body is literally crushing itself without them.

 

There is disability and there is disability.

 

If I could get back to a place where there was a bearable position to lie in, could enjoy food and feel full and not have constant akathesia that makes me eat, could feel body normally and was not terrified of the whole of material reality and all sensory input even if I was still housebound and unable to do much I would take that.

 

I'm so sorry adjusta. You've been thru a lot. I hope you start making progress soon.

PTSD - your symptoms are very classic and normal for a WD,It seems to me it is ppl with a lot of physical stuff that are often more protracted,

 

My neurologist is aware of it. He has said it can take 6 years or more for the brain to find a way to reregulate neurotransmitters.

 

He says I am so sensitised everything is in complete chaos.

 

My doctor said this to me also

And brain being very neuroplastic

 

Your doctor also said 6+ years?

Pleasebehere, because it's a catch 22 scenario. That's why there's a protracted group on here, the members who are suffering for so long, years, come back and post on this forum and what does that do to people who are only a couple weeks or months out? If they think they will be suffering for that long extremely, they might make unthinkable decisions. They can't handle the truth. People early on dont for WANT to believe there is even a possibility that they won't heal. But the possibility exists, just like any other forms of brain injury.

But I recently read a post on the protracted where a member said they waited and waited for years only to make little progress. He/she wished he would've made arrangements for his family and life earlier and not wasted all those years waiting for something that never happened (a full recovery).

It's likely I'm not going to heal tomorrow. It's likely I'm not going to heal in a month. Especially when symptoms have been constant. Days turn into months turn into years. So I'd rather be proactive in the things I can control, because I don't have control over if and when my brain will recover.

 

Ptsdmiracle I see your point and you're a smart woman. I also think it's better not to sugar coat things. When I see blogs with people being homebound after 30 months, I realize it's OK for me to hold at this dose. I'm not risking that outcome. Which is unlikely but not impossible. I still think you will more likely heal. You're young and your brain is definitely working well.