Welcome to the Long Hauler's Group

[[Ka...]]

On 04/10/2023 at 08:48, [[H...] said:

Hello all I'm so glad to have found this group. This is year 7 for me and I'm finding that knowing this is BIND and not protracted withdrawal has helped me immensely in coping. Looking forward to getting to know ya'll. 

hi how are you doing lately?

[[La...]]

Kay, welcome to this group. How many months are you? 
To answer your question, I noticed the driving / riding in the car issue since the end of my taper and  my acute days because that’s when those vestibular symptoms hit me. So for me, this has been years of having this problem. But, I also couldn’t walk or sit up hardly at all and time restored that. So, this will also be restored…it has already began to do so because I couldn’t even get in a car to even sit in it not so long ago. Now I can sit in it for 30-40 minutes ( no motor running) and about 25 minutes with it running ( but not in motion). Driving it or in motion, only about 3-5 minutes. More time is needed as I’m still in the healing process. 

[[Be...]]

I have BIND now and don't call it w/d anymore.  I still have trouble driving and I used to have a job as a delivery driver.  Getting a haircut, I wanted to bolt out of there a few months ago, but I made myself stay and get my haircut.  Then my OCD, I come home and make sure it's even and sometimes recut it.  I'm a mess still. 

[[La...]]

Nathan Arizona, how are you doing? 

[[Be...]]

It was a miracle today that I was able to drive and go get my required trash bags since we have to pay for our trash here and also to go drive and get gas in the car.  I don't know how I did it since I can barely walk anymore.  My nervous system is a total wreck and I shake all the time still. 

[[Co...]]

4 hours ago, [[B...] said:

It was a miracle today that I was able to drive and go get my required trash bags since we have to pay for our trash here and also to go drive and get gas in the car.  I don't know how I did it since I can barely walk anymore.  My nervous system is a total wreck and I shake all the time still. 

Good to hear, @[Be...]. And on a bad day, remain positive and hang on to this.

[[Na...]]

On 11/12/2023 at 07:47, [[L...] said:

Nathan Arizona, how are you doing? 

Doing ok. Been through a bad spell over the last 3 - 4 weeks but seem to be coming out of it.

How have you been?

[[Co...]]

1 hour ago, [[N...] said:

Doing ok. Been through a bad spell over the last 3 - 4 weeks but seem to be coming out of it.

How have you been?

That's good to hear, @[Na...].

[[ra...]]

Not sure if I’m posting this in the right place. Can’t tell if I’m starting a new subject or just replying to one that was already here.  As I’m posting from my phone. I’ve been away from this forum for several years. It will be 20 years this coming February that I cold-turkeyed off .5 Xanax that I was on for 2 1/2 years. It’s been hell ever since. I always hesitate to come back to the forum because I don’t want others fearing it will take them this long to recover. I don’t know of anyone else that has been off this long and not healed. I try to stay positive, but it sure is hard sometimes. It’s not that I haven’t seen any improvements over the years, but it’s still hell most days. I lost my job of 23 1/2 years in September of 2023. I thought maybe that’s what I needed, and I would get some rest and see more of an improvement. But honestly it hasn’t improved. I’m stressed about finding another job. I worked all those years while going through this and it was pure hell. Thankfully I had a desk job because if it would have been a physical job there would have been no way I would have been able to continue to work. It’s only by the Grace of God I was able to do it at all. I’ve learned to fake it all to well that nothings wrong with me. I had to have insurance at the time I came off so I didn’t have a choice. Some may say if you worked through it it couldn’t have been that bad. That’s definitely not true. I cried many days before work, on my lunch and as soon as I left work. I still can’t believe I did it. I’m having bad anxiety about finding a new job. Right now my husband has insurance on me, but he will retire probably in a few years and I’m 5 1/2 years younger than him so I will need insurance eventually. I’m all over the place on sleep. Some nights I get 6 hours, and am up early and have energy. Other nights I sleep 10 hours and can’t hardly get out of bed and have no energy and have to push myself to do anything. It’s not that I haven’t improved at all, because I have. Like everyone else I have to look back to see how far I’ve come. I still have bad muscle pain and weakness daily. Headaches regularly. Fatigue, anxiety, numbness in my legs. Heavy feeling legs on waking up. I have really bad upper  back weakness. I just feel terrible in the morning with bad air hunger still. But improve in the afternoons most days. And this is just some of what I experience.  Having a hard time believing these days that I’m not permanently damaged. I’ve never had one normal feeling day in 20 years. I’ve also never had a long  window of feeling better. I only have about one day a week that I feel remotely human. And even those days I’m in my massage chair regularly or using my massage gun because I’m hurting so bad. Hoping I can connect with  someone who can help me. Please done let this scare you. I’m not the norm.

[[Be...]]

There's a thread on here called BIND.  That's where I post.  I'm off about 13 years and not doing well at all.  i know I have permanent damage.

[[ro...]]

On 04/01/2024 at 21:39, [[r...] said:

Not sure if I’m posting this in the right place. Can’t tell if I’m starting a new subject or just replying to one that was already here.  As I’m posting from my phone. I’ve been away from this forum for several years. It will be 20 years this coming February that I cold-turkeyed off .5 Xanax that I was on for 2 1/2 years. It’s been hell ever since. I always hesitate to come back to the forum because I don’t want others fearing it will take them this long to recover. I don’t know of anyone else that has been off this long and not healed. I try to stay positive, but it sure is hard sometimes. It’s not that I haven’t seen any improvements over the years, but it’s still hell most days. I lost my job of 23 1/2 years in September of 2023. I thought maybe that’s what I needed, and I would get some rest and see more of an improvement. But honestly it hasn’t improved. I’m stressed about finding another job. I worked all those years while going through this and it was pure hell. Thankfully I had a desk job because if it would have been a physical job there would have been no way I would have been able to continue to work. It’s only by the Grace of God I was able to do it at all. I’ve learned to fake it all to well that nothings wrong with me. I had to have insurance at the time I came off so I didn’t have a choice. Some may say if you worked through it it couldn’t have been that bad. That’s definitely not true. I cried many days before work, on my lunch and as soon as I left work. I still can’t believe I did it. I’m having bad anxiety about finding a new job. Right now my husband has insurance on me, but he will retire probably in a few years and I’m 5 1/2 years younger than him so I will need insurance eventually. I’m all over the place on sleep. Some nights I get 6 hours, and am up early and have energy. Other nights I sleep 10 hours and can’t hardly get out of bed and have no energy and have to push myself to do anything. It’s not that I haven’t improved at all, because I have. Like everyone else I have to look back to see how far I’ve come. I still have bad muscle pain and weakness daily. Headaches regularly. Fatigue, anxiety, numbness in my legs. Heavy feeling legs on waking up. I have really bad upper  back weakness. I just feel terrible in the morning with bad air hunger still. But improve in the afternoons most days. And this is just some of what I experience.  Having a hard time believing these days that I’m not permanently damaged. I’ve never had one normal feeling day in 20 years. I’ve also never had a long  window of feeling better. I only have about one day a week that I feel remotely human. And even those days I’m in my massage chair regularly or using my massage gun because I’m hurting so bad. Hoping I can connect with  someone who can help me. Please done let this scare you. I’m not the norm.

Wow, that's a long time out and still feeling bad. You mentioned in another thread a couple years ago that you wanted to try a Keto diet. Did you venture into that at all? In many cases a big change in diet can be of great benefit. For me personally, diet has affected the way I feel. It hasn't cured me, but it does make a difference. I hope you start feeling better very soon.

[[...]]

Hello all bb! I´m out of  clonazepam that I took for about 25 years. my head is heavy and there is some dizziness, my heart was racing, so I took propanolol a few days. Is better now and I stop that too. Hoping will get better.

[[Na...]]

18 hours ago, [[B...] said:

Hello all bb! I´m out of  clonazepam that I took for about 25 years. my head is heavy and there is some dizziness, my heart was racing, so I took propanolol a few days. Is better now and I stop that too. Hoping will get better.

Hope you feel better soon Bianca.

[[...]]

Hi, Nathan. I went outside today, do some banking, and eat. I´m feeling better, not so angry anymore. I am such an anxious person, that I took the benzo for many years, didn´t know it was so damaging. I have many issues with this anxiety that I feel so overwhelming everyday. It´s worse this feeling but I have to go through this to take the benzo off.

Fisically I have some tremor witch I believe comes from anxiety, and I am a bit tired. but I able to work, go out and I feel ok overall. Thanks for the wellcoming

[[Ne...]]

On 05/01/2024 at 22:05, [[B...] said:

There's a thread on here called BIND.  That's where I post.  I'm off about 13 years and not doing well at all.  i know I have permanent damage.

Hi Becks...how do I find that BIND thread?  Thank you.

[[Be...]]

BIND thread link:

 

[[Ne...]]

12 hours ago, [[B...] said:

BIND thread link:

 

Thank you!  

[[Be...]]

You're welcome.

[[Ju...]]

I thought we lost the protracted group, I just randomly ran across this after months of not using the new benzo Buddies website. Almost 5 years out and still going through hell.

[[Co...]]

2 hours ago, [[J...] said:

I thought we lost the protracted group, I just randomly ran across this after months of not using the new benzo Buddies website. Almost 5 years out and still going through hell.

No, no. There was few a weeks of upheaval when we migrated to this software in late July. But last August @[Na...] agreed to take on the group to replace the old forum and it has been going strong ever since.

I hope support from the group helps you better manage your situation.

[[Ju...]]

7 hours ago, [[C...] said:

No, no. There was few a weeks of upheaval when we migrated to this software in late July. But last August @[Na...] agreed to take on the group to replace the old forum and it has been going strong ever since.

I hope support from the group helps you better manage your situation.

Nice, hopefully I'll find my old BB's on the new software.

[[Co...]]

37 minutes ago, [[J...] said:

Nice, hopefully I'll find my old BB's on the new software.

Hi @[Ju...]

We made a lot structural changes. Frankly, although the old setup might have worked for some of the longer-term members as place to hand out with 'friends', new members - those in most need of support - were served poorly. As a result, new members were slow join in, and were quick to leave. (I'm generalising.) And longer-term members would slowly drift away over time (as is inevitable). So we were being hit at both ends.

I wrote quite a bit about it at the time - I can dig up some posts if you like. Some longer-term members did not like the changes - I think some left. But new members are now far more engaged and better supported. And as newer members become old hands too, I think - going forward - new, new members will be even better served.

And, we are not finished. There is more in the pipeline which should further help and support Buddies.

[[Ju...]]

7 hours ago, [[C...] said:

Hi @[Ju...]

We made a lot structural changes. Frankly, although the old setup might have worked for some of the longer-term members as place to hand out with 'friends', new members - those in most need of support - were served poorly. As a result, new members were slow join in, and were quick to leave. (I'm generalising.) And longer-term members would slowly drift away over time (as is inevitable). So we were being hit at both ends.

I wrote quite a bit about it at the time - I can dig up some posts if you like. Some longer-term members did not like the changes - I think some left. But new members are now far more engaged and better supported. And as newer members become old hands too, I think - going forward - new, new members will be even better served.

And, we are not finished. There is more in the pipeline which should further help and support Buddies.

Makes sense. It's hard to navigate forum websites when you're going through benzo withdrawal, hopefully this new website works a little better for the new members.

I like the new design a lot better, it's more eye-catching. One gripe I have about it though; when you click on a notification, it takes you to the last page and doesn't show what you're commenting on, so you have to go to the first page again to see what it was about. This could be extremely confusing for new members going through acute stage in particular.

Another thing that might be useful; having some form forum option "buttons" aka interactive links with the most common pages when you log in, instead of having to go to drop down menus in the top right. It's great to have all the different options on the top right if you are experienced, but if you're a new member going through acute, that could deter you permanently.

Overall I like it better though.

 

[[Co...]]

14 hours ago, [[J...] said:

Makes sense. It's hard to navigate forum websites when you're going through benzo withdrawal, hopefully this new website works a little better for the new members.

We hope so. It was more about jettisoning Buddie Blogs and a multitude of thread-based groups, which acted as silos. Too many members would go to their favourite thread-based group, their 'Blog' or the blogs of their friends, and barely interact with newer members. And newer members would find groups and blog too cliquey to join in. The community was failing to focus on those most in need - usually, this is newer members.

Now, we have just a few groups. We might create a few more, but it will not be the free-for-all of before.

For what it is worth, the team have been proven correct. Although some long-term members did leave when we closed down those areas, newer members are far more likely to introduce themselves (rather than lurk) and are better engaged and supported. Overall posting numbers are not much improved (yet), but posts to core part of the community (taper planning and withdrawal support) are greatly improved.

14 hours ago, [[J...] said:

I like the new design a lot better, it's more eye-catching. One gripe I have about it though; when you click on a notification, it takes you to the last page and doesn't show what you're commenting on, so you have to go to the first page again to see what it was about. This could be extremely confusing for new members going through acute stage in particular.

Notifications will take you either particular posts (because you have, for example, been quoted) or the first new post on the thread if you have previously read it. If there is only one new post, the last post, it will take you to this. If you have requested notifications for new threads/topics on a particular forum, the notification will take you to the first post.

Notifications can take you later in the thread if you have missed previous notifications of earlier new content. If you instead are reading thread titles on a forum, threads with new content will appear in bold (if you are up to date with the thread, it will not appear in bold). But if you click on a bolded thread, you will be taken to the first new post.

14 hours ago, [[J...] said:

Another thing that might be useful; having some form forum option "buttons" aka interactive links with the most common pages when you log in, instead of having to go to drop down menus in the top right. It's great to have all the different options on the top right if you are experienced, but if you're a new member going through acute, that could deter you permanently.

Overall I like it better though.

We are updating some of the content. Menu changes will naturally follow from this. When we have better static content, we all will make better use of linking to it.