Protracted still very disabled - could use support

Hi

 

I have lost a lot of support I once had

Which is understandable the longer this goes on

Isolated still with mental and physical symptoms (housebound, cannot tolerate sitting in a car or even walking)

 

Trying to reach out to people more

but it always ends up somehow being triggering and not helping

The professionals (social workers etc) that promise to call or try to help never do

Reaching out to coaches but it doesn’t have the same effect as it used to have

 

I cannot feel hope in my body or mind

Cannot feel connection or love to anything

Have totally lost sense of self

Feeling of running on borrowed time or somehow time is running out

Extremely traumatized by the duration and intensity of this experience

 

This was supposed to turn into a success story, a story of perseverance, healing and strength

But somehow it feels like it has done the opposite for me

I do so much to try to help myself but somehow nothing seems to stick

 

My caretakers are burnt out

Feel like a burden

So much grief and guilt coming up

 

My life feels like a huge big puzzle I am not qualified to resolve and I just think I’m tired and could use support or kind words

I am glad that you are posting for support.

 

I think this reading your post:

 

**Sometimes things get worse right before they get better**

 

I have heard so many stories of healing that are years in the making. People think this is it, they are a worst-case scenario, and then BOOM, they heal. Or they are considering some drastic desperate measure at their wit's end, and then BOOM, suddenly they heal.

 

This is why we have to hang on and believe. Despite the chemical mental and physical gymnastics these drugs make our brains go through.

 

A happy ending is on its way to you.

Thank you so much for taking the time to answer my writings. I really appreciate it. It helps a little to not feel so alone to have some interaction and encouragement. I’m finding that the loss of support has really taken it’s toll on me. I hope everything you say is true. I seem to be at a stand still where nothing has really moved for the longest time. Thank you again.

It's totally horrible, Wilding.  I know how you feel.  Four plus years of this for me and all I can say is that it's improving.  But so slowly, I'll probably be dead by the time my big day comes.    When I don't feel the way you do, or hhave felt the way you do.  I can relate entirely. 

 

It's going to improve Wilding, though hard to believe I know.  Much literature on the subject now talks of it taking years for some of us to emerge.  Something I found difficult to believe in the early days.  But not any longer.  4 stinking years! but always with improvement.  Steps forward steps back, but always a little bit forward. 

 

Hang in Wilding.  It's not going to remain this way for you.  Accept, and know, that this is the benzos and that you are going to get well again.  Tweaked a little, but well again. 

 

D x

 

 

 

 

Wilding!

 

I'm always thinking of you and sending love.  It pains me to know the depth of your suffering but you have come to the right place where people understand and can relate.  Deadwoodgone has a good response to you which I am going to digest and use for myself too.  "always a little bit forward".  It may not feel like it but I bet you are doing some deep healing in these dark days.  I won't try to cover you in positive talk but I will say that I still believe there will be light for you as you come through this. 

 

Sending hugs, peace, love and hope,

Helen

 

Wilding:

 

I read your post with tears in my eyes!  I understand your pain and anguish.  This is such a cruel experience, but one you will get through.  There is light and love for you as you move toward healing.  I know it does not feel like that now, but I hope you can hold onto the fact that you will eventually heal.  I am in a tough spot right now myself at 36 months.  The suffering is truly unfathomable.   

 

Please keep reaching out and we will walk with you until you are healed.

 

 

Wilding,

 

I am so sorry to hear of your suffering and struggling. I completely understand I'm right there with you. This is just so brutal. We're gonna get through this everyone heals it could be just around the corner for us. Any day now. We have to hold on to that thought. I know it isn't easy. Sending you big hugs!  LiveLife

Rebecca, when you say BOOM! Healed!! What does that mean?? Do they wake up and completely return to their true selves??? I mean…how do you know? I’m in 6.5 months and really think: This is it as I don’t remember self before all of this brutality…

 

Wishing for everyone their own BOOM moment! SOON!!!

Deadwoodgone, HelenHMB, Decatur, LiveLife: thank you thank you all so much for replying and letting me know I’m not alone, it really touched my heart  :'( I wish I had the energy to respond to you all separately but I’ll just say that I read all of your messages. I appreciate you all for taking the time in the midst of your own suffering and replying such heartfelt encouragement.

 

Sending each one of you a big healing hug. I am saddened that this level of suffering usually befalls on the most gentle people.

 

I haven’t been writing much on this forum lately but please if you’d like, we could use this thread as a check in from time to time if anyone is up for it. I completely understand if not (as I also struggle with communicating at times) and there are other threads and groups in here as well. Just a through that came to mind.

Wilding, I would love to continue to communicate through this thread.  Thinking of you today!

 

 

Wilding,  I’m with you in spirit too.  I’m behind you in time off but with you in suffering.  You’re not alone.  It’s almost too much to accept but we just keep doing it because we know it’s the only way out.

Hang on and know you’re not alone.  Hope you can post some improvement very soon.

Hugs, Fire

Wilding and to all my fellow BB’s-  The suffering is so real, and I am so sorry for your prolonged pain.  Big ((((hugs)))).  We think that this should end when we are done, and then for it to continue I can only imagine how frustrating this must be. 

 

I am still in the process, and often feel so disconnected and isolated and long for the person I once was.  I look so forward to being off of this poison and to continue to heal. It is scary to think, that it could continue for “x” amount of time.

 

However it does seem that with time there is healing and we just have to keep holding on to that hope.  We can keep encouraging each other in this space too.  I like the idea of checking in here with each other.  I’m not always good with staying connected with BB’s, I try, but sometimes I just disconnect  I am working on this 

 

Looking forward to making new bb friends here too 

 

Marie

It's not THAT uncommon to still be having limitations at 31 months.

 

I just went through the fall & winter with issues getting into the car as a passenger. I could even do better with driving prior to that. Driving was always an issue and at different extremes for this entire journey for me. It had never felt too good to drive. Some days i'd do pretty well, most days not so much. Then last fall/winter not only did driving get so challenging that i couldn't,  just riding in the car as a passenger became a problem as well.

 

This started around my 3 to 3 1/2 year point.  I was doing ok with it prior to that. But, then for whatever reason, my body/nervous system kept getting a lot of serious motion sickness in the car. It went on like that for 7 months. I had to really dig deep to trust the process that this is what my body needs to do to heal. During symptom flares just walking outside would be too much too. I spent a lot of those 7 months either housebound, yardbound, or neighborhood bound. I understand what you are going through.

 

Finding other people that also had these similair troubles helped me. I joined Baylissa's support group (it is not free) because many of the people on the benzo buddies board have to work & push themselves, or they are just fortunate enough to be able to drive, and reading all of that was doing nothing but triggering me. And, I'm not on the BB forum all that much, but I was watching people push & eventually get flare ups, or they were fortunate enough to physically handle more, & I wanted to be in a space that's more gentle. This forum can be harsh sometimes.  Baylissa's group has more folks who have more limitations that aligned more with what I have going on. When I come to BB I immediately weed through all things triggering & only communicate with those who I've developed peaceful relationships with.

 

I HAVE TO stay away from all things triggering. I gave up on "regular" therapist in year one of this journey. I had a therapist who I had to educate on benzo injury & she admitted to taking benzos herself, so of course she didn't believe me. Not only was talking to her a waste of time & money, she traumatized me. So, that was a lesson learned. 

 

I set strict boundaries. I don't talk to anyone who does not believe or support me in this. I can't or I'll get so stressed that it will bring on symptoms. I've cut many people out of my life & I haven't looked back. They are either on this crap & still "drinking the kool aid" or they don't understand & have an opinion that I don't need to hear. Doing this has made my life so much more peaceful & peace is what our systems need. I've created a beautiful life for myself surrounded by only supportive & positive people & this is a gift I will carry into the rest of my life even after I heal.

 

Also, a deep love for ourselves is essential in all of this. I love myself & i know I will someday heal. Even though it is taking me a long time, I still know deep down that this is not permanent. I still have a long road ahead of me, but I keep track of what improvements I've made and I repeat them to myself all day long. I know I am TEMPORARILY disabled. I can't make plans or accept invitations yet. I have no consistency in my good days, therefore wedding showers or family reunions etc are a "no" for me right now because I have no idea how I will feel on the day of.

 

The people in my life know not to put expectations on me. If I'm invited to something (which is rare because they are respecting the fact that I'm injured) - It's like an open "come if you can" kind of invite. They hope I can make it, but they also understand if I can't.

 

In order to do this, and to have this kind of support system means that my social circle is small. It's just my husband, my sister, my brother in law, my dad, a few neighbors, some people on the boards, benzo coach Angela Peacock, & me. With all the daily challenges I have, that is plenty. & I still feel a little isolated once in a while, even with these people in my life because they don't know what this feels like - with the exception of Angela & other benzo injured. I'm talking about my family & my husband. They could never fully understand unless they have been through it themselves & that is where the self love comes in.

 

I love who I have become in all of this. I love that I seek peace in my life & I don't partake in the "rat race". I love my mindful/meditating/peace seeking/nature loving self.

Miss F,

 

What a great post you just made!  I read every word and will read again.  I'm like you....I'm only around the ones who can respect my situation and be supportive. it's helped so much!  I find that most people I talk to try really hard to underhand and are interested and mostly compassionate. 

 

I want to say more but need to step back from my laptop for a while. 

 

Thanks for this great post. it has given me a lot to think over.

 

Take good care,

Helen

Miss F, I have just come back from staying at a good friends house where I had a few days of deep fatigue…..in bed mostly.

I just felt that my friend couldn’t or wouldn’t understand. She didn’t say anything outright but just little hints here and there.

This has done me no good at all.  I’ve come home upset. I read your post and it has helped me a lot.

I know and God knows that I’m doing my best. That’s all that matters!

Like you, I have a few family members a a couple of friends who understand.

Maybe, I need to distance myself from that particular friend until I am more recovered.

Previous to visiting her, I had 10 wonderful days of feeling pretty good so I was hoping it would continue for the visit. I should know by know that it doesn’t work like that!

Actually, I hope she never does understand what going through this hell is like but we do need a level of empathy……..well I do anyway.

Thank you.

Hardy xx

Decatur, happy to hear that  we don’t need to take any pressure from it but please post on this thread when ever you feel like it.

 

Feelingfire, howmanytimes, Miss F, Helen and Hardy, thank you so much for chiming in on this thread! It is much appreciated. Don’t have it in me to reply to all individually but I have read your posts.

 

So many good gems there and what you said about safeguarding your energy and choosing carefully the energy you are around is so so important. I really do get what you said about even not attending to your meetings with “regular” therapist.

 

I have found that it can at this point be quite life saving (not to be too dramatic) to avoid anyone who invalidates this experience. I cannot physically or mentally subject myself to it anymore because I have been so severely gaslit by the medical professionals for so many years (10+ years). It is absolutely a major major trauma on top of this extremely challenging process. When we are in our absolute most fragile and vulnerable state, we do need validation, love, being heard and not rushed. Unfortunately most of us don’t ever get that other than from the groups and from each other. You really learn a lot about the state of humanity by going through this.

 

Anyways, sending lots of healing thoughts to you all!

 

I am still in the process, and often feel so disconnected and isolated and long for the person I once was.  I look so forward to being off of this poison and to continue to heal. It is scary to think, that it could continue for “x” amount of time.

 

Marie, Just wanted to say that please try not to make our stories your story, if I have learn anything from being in this community is that you never know how quickly you heal and at what point of your journey. But you seem to have a great attitude, just keep going!

 

I am still in the process, and often feel so disconnected and isolated and long for the person I once was.  I look so forward to being off of this poison and to continue to heal. It is scary to think, that it could continue for “x” amount of time.

 

Marie, Just wanted to say that please try not to make our stories your story, if I have learn anything from being in this community is that you never know how quickly you heal and at what point of your journey. But you seem to have a great attitude, just keep going!

 

Thank you for those kind words.  I do know that we are all different and our healing journey’s our so individual.  I do honestly hope that doing a slow taper, is allowing me to “heal” and that by gently walking off, I will be able to return to normal somewhat quicker….”hoping” is the key word.

 

My heart does go out to you and all those who continue to suffer after this hideous process    All we can do is I guess is hope that each day there is healing taking place, and that “one day” the SUN will SHINE so BRIGHT, and the BIRDS will SING so SWEET, and the AIR will SMELL so SWEET, again……..

 

Marie

Just checking in how are you fellow protracted people holding on.

 

My impatience is growing as the spring is turning into summer and I face yet another summer of just existing. I look outside the window and where I live is just absolutely the most beautiful place in nature ever, but cannot feel it/sense it at all. Maybe I should think this frustrations and impatience as a good sign. Maybe there is a small glimmer of life in me after all.

Hi Wildling,

 

I'm glad you checked in.  Hey, maybe that impatience IS a good sign.  You have some spark! I'm sorry you are still suffering.  Maybe that beautiful nature around you is a positive healer.  I'm sending you healing hope and hugs, Wild.

 

I'm slowly coming out of a multiple week wave that was pretty nasty.  I think I'm coming around now but plan to go very slowly and not jump back into things too fast.  Come with me!!!  It's spring here and all the birds are singing. They're calling you....

 

:smitten:Helen

Hi Wilding and people!

Wilding, I'm so sorry about the way things are for you. I think I can understand a little bit. With the exception of walking, I have, or experienced, everything you have. Yes, this is a  very isolating experience. I've lost much, too, due to these drugs and the wd process. I don't have much to offer you( I  can't even help myself) but you need to know your other alone in this. They say it's darkest before the dawn which is true. Please take life day-by-day and do what it takes to be happy. I'm sorry I don't have  better suggestions.

Rebecca, when you say BOOM! Healed!! What does that mean?? Do they wake up and completely return to their true selves??? I mean…how do you know? I’m in 6.5 months and really think: This is it as I don’t remember self before all of this brutality…

 

Wishing for everyone their own BOOM moment! SOON!!!

 

Yep. I have heard of this so many times now. Usually, though, the person is not on any other meds.

Hi Wildling,

 

I'm glad you checked in.  Hey, maybe that impatience IS a good sign.  You have some spark! I'm sorry you are still suffering.  Maybe that beautiful nature around you is a positive healer.  I'm sending you healing hope and hugs, Wild.

 

I'm slowly coming out of a multiple week wave that was pretty nasty.  I think I'm coming around now but plan to go very slowly and not jump back into things too fast.  Come with me!!!  It's spring here and all the birds are singing. They're calling you....

 

:smitten:Helen

 

Hi Helen, thank you for your well wishes and I am happy to hear you are coming out of your wave! Hopefully you will be able to spend a lot of time outside enjoying spring. I appreciate you checking in 

Hi Wilding and people!

Wilding, I'm so sorry about the way things are for you. I think I can understand a little bit. With the exception of walking, I have, or experienced, everything you have. Yes, this is a  very isolating experience. I've lost much, too, due to these drugs and the wd process. I don't have much to offer you( I  can't even help myself) but you need to know your other alone in this. They say it's darkest before the dawn which is true. Please take life day-by-day and do what it takes to be happy. I'm sorry I don't have  better suggestions.

 

Thank you, I wish you all the best. You seem to have good spirits about your journey 

Day to day - that’s all we can really do in this.

Wilding - I think you are healing as you are “upset” about spring turning into summer, those are some strong “feelings”. All good 

 

I find for myself, that when I force myself to get out in the morning sun, it truly makes a HUGE difference.  There are many times I have to force myself and other times ( i guess in my windows) I just automatically go outside and enjoy the rays on my face.  When I do get outside and sit in the sun, with no sunscreen and the early ray’s, it does something….it is like a reset of some kind.  I still may not pick up the phone and call someone that I should and be engaged, or I will cancel a lunch because I just don’t want to be social….but at least I got outside and it did help a little.  This is my only advice, that does “help” me somewhat to feel a little better.

 

Just wanted to know that I am thinking about you and have had you on my mind.  Sending positive thoughts and healing Prayer’s to you 

 

Marie