12-18 month support

[[No...]]

Coop ... how are you doing? ... hoping you get out to your movie today ...

 

For me ... the peak revving has passed, again ... got the room unplugged ... things are stabilizing, again ... another puttering day ... not gonna try for the library ... or anything outside ... it will take an over abundance of concentration which I don't have right now ... still very slippery and cold out there ...

 

Take Care ...

 

[[Co...]]

Nova, glad the room came to its destination and stopped. Also glad that you are not scared...pissed has more empowerment....I am up and about .  a little ' potsy'...which I haven't had in months...think it's leveling off. Wish the movie was tomorrow...but I am hanging on to the motivation to go...if I can't my ex will take him alone...he won't miss out.  But I will miss out. I have some of that internal dizziness but I think the headache is better....maybe I won't die...lol....

....stay cozy inside ...and hopefully the sun comes out tomorrow ( isn't that a movie line?...Annie ?..lol)

....take care Nova.  ...coop

[[dr...]]

Coop-please remember you have had these headaches sooo many times before and you haven't died yet   health anxiety is the side effect of benzo lies

[[Co...]]

Thanks Drew, my headache is not as bad today.. and yes the health fear is a biatch. I am completely tired , woosy, and sort of weak....I know it can pass in an eyeblink...2 days ago I felt more than 95% normal.  Like Nova ,I am going to do what I can and be ok with what I can't do today.. So glad you are feeling strong and making progress. ...have a really good day Drew. ..coop

[[Sk...]]

Green, bless your heart for the encouragement. I think I have combed through every success story and I think 90% of them are 18-24 month healers...most 24 months. Some say they started feeling sx drop away and the scraps of life returning around 18 months. PianoGirl had a great success story  too...and Tink's is really encouraging

.......I don't think anyone should feel bad about not working. I have tried to let go of any and all feelings of guilt about what I can not do through w/d....It is really hard not to be able to plan anything with confidence...living one day at a time sometimes adds to the feeling that I am 95 and truly dying. Just thinking about doing an event sometimes causes me anxiety. I have learned ( sadly) to get up in the morning and let the day lead me. I only do simple open ended fun things...things that I can back out of at the last minute if I have to. I have lost friends who don't understand and missed out on events that killed me to miss...but it is what it is...

.....Green you sound like you are holding on to your baseline. I really think that is where we see our real healing...on the baseline between windows and waves. Hoping sick and scared is not my new baseline.

....thank you so much for coming back on and supporting us. ..love love to you Green...thank you for telling us about the nurses...24 months...I am not even thinking about protracted until at least 26 months....off...coop

 

Coop, this kills me, the total unpredictability of our lives. I was losing my life in tolerance, I was getting disconnected, so to speak, so my operation and cold turkey were the shock that brought me back to life and I don't get to live this life I have come back to ?

 

Exactly a year ago, I was so happy to be back to my life,  I signed up for volunteering in a couple of groups and I have cut down to nothing my participation now. It just decreased, instead of increasing and that breaks my heart or at least, leaves me confused, it's counterintuitive. SO now I can do less than  a year ago ? How is that  possible ?

 

Friends, I have lost most of them  but I will work on that when I get better. 

 

Oh, well, have to go now. enough moaning for now !

[[No...]]

I am up way past my usual shut down time ... doing okay ... still a little spacey and jittery ... lots of energy moving about ... waiting to see if this settles down a bit more ...

 

Hope you all are doing okay this evening ...

 

[[pe...]]

Hi Nova,

Spacey and jittery is the no for me. Glad you're doing ok. I'm ok except for my vision problems/dr and some slight disconnection. I am also really missing my dad. It will be two months next week. I just can't believe it. Boof

 

Today was a full day, an easy day for distraction. Lots of errands and putting packages together to mail to friends and family, just for fun. Nice to think about other people again.

 

Hoping tomorrow is a good one.

 

Peace2

 

[[Co...]]

Nova, I hope things settled for you. This has been a zinger wave.. gotta open up to better days. I ended up staying home and puttered comfortably for awhile and then gave it up and went back to bed. Feeling better. Crossing my fingers. My ex took my grandson to the movie . Max is still little and wanted to see Paddington ..my ex said they both enjoyed it...so not all was lost. I will catch the next movie date. I am disappointed to miss that time with them but it was the right thing to do for me...this wave has drug me around the dance floor to way too much music.. Staying in bed really was the rest I needed. ...Nova, I hope you feel better tomorrow and your weather...real and benzo...brightens enough to let you out to play...rest well Nova.....coop

[[Co...]]

Peace, I am sorry that you are missing your dad.. sending love and hugs to you. ....The spacey d/r disconnect just seems to be the way we see the world through this mess. I will be singing ,I Can See Clearly Now for all the world to hear when this is over. ...Sending packages ..Such a fun thing to do. Caring about others and spreading around some happiness gets so lost in in the waves. ...All in all you are sounding like you are hanging on to your baseline...that is so good...great to see you you here today...Are you feeling any more rested?....Wishing you big windows Peace....coop

[[No...]]

Peace ... good to hear you had a mostly comfortable day ... doing for others is always a blessing ...

 

As for your dad ... memories will life on ... that seems to be up to us ...

 

I know your schedule is chock-a-block full ... and ... if you do not know his work ... poetry and stories and wonderful novels, Wendell Berry writes eloquently about "memory" and community and family ... I listen to the audiobooks when I can ... soothing stuff for me ... a marvelous story teller ...

 

Hope you have an easy day tomorrow ...

 

[[No...]]

Coop ... "zinger" is one word for it ... I seem to be pretty "wired" tonight ... and not revving ...

 

Glad you got some of the rest you feel you needed ... I know I have to recognize and go with what is in front of me each day ... and sometimes it is not the same as the commitments I would like to fulfil ...

 

Better days are coming ... and today, after starting off as a mad roller coaster is turning out to be just another blip ... we are getting there ...

 

I hope to get out some tomorrow ... and they are telling us we can expect another storm sometime later on Monday and Tuesday ...

 

Have a good evening ...

 

[[Co...]]

Sky...I think most of us have lost friends along the way. But we have made great new friends here with people who totally get this alternate world of w/d.  I have been lucky to hang on to my little family. My kids , who are adults have been great, but even at that there have been times of , " mom, are you syre this is still w/d. ?" ...they don't understand why I won't go to the doctor.

....Yes, I think there were times last year in which I too felt better than I do this year. We are going to get there Sky...we will have our lives with friends and volunteering and activities back...We can tick off the remaining months together ...and all go to Nova's for chicken stew.  .Hope tomorrow is a window day for you Sky....coop

 

 

[[Co...]]

Nova....I love WB......when we are healed we can have an online book group..  lol....goodnight dear Nova...

[[No...]]

Coop ... you are on ... can't wait to hear everyone's favourites ...

 

Goodnight Coop, be well ...

 

[[Gr...]]

Green ... thank you for your words ... I don't feel scared today ... just pissed ... and perhaps that is just another side of scared ... who knows ...

 

We just keep moving on ...

 

 

Nova, getting out and taking a walk would probably be very helpful.  I only do the two miles, usually I'm pretty slow, but consistent, every day.  I skipped 2-3 days, weather, whatever, and I regressed, mood, physical sx, anxiety.  So maybe when the ice clears you can get back out there.  I don't know how cold it is up there.  We've had some pretty frigid weather.  I wear a scarf over my mouth, for my fake asthma!

 

We're 15-16 months now, I think we're going to start seeing some major improvements soon. 

[[Gr...]]

Green, bless your heart for the encouragement. I think I have combed through every success story and I think 90% of them are 18-24 month healers...most 24 months. Some say they started feeling sx drop away and the scraps of life returning around 18 months. PianoGirl had a great success story  too...and Tink's is really encouraging

.......I don't think anyone should feel bad about not working. I have tried to let go of any and all feelings of guilt about what I can not do through w/d....It is really hard not to be able to plan anything with confidence...living one day at a time sometimes adds to the feeling that I am 95 and truly dying. Just thinking about doing an event sometimes causes me anxiety. I have learned ( sadly) to get up in the morning and let the day lead me. I only do simple open ended fun things...things that I can back out of at the last minute if I have to. I have lost friends who don't understand and missed out on events that killed me to miss...but it is what it is...

.....Green you sound like you are holding on to your baseline. I really think that is where we see our real healing...on the baseline between windows and waves. Hoping sick and scared is not my new baseline.

....thank you so much for coming back on and supporting us. ..love love to you Green...thank you for telling us about the nurses...24 months...I am not even thinking about protracted until at least 26 months....off...coop

 

Coop, thanks so much for that.  You're so right.  The things I was worried about doing, and wasn't getting to any time soon, work and organizing the house, I recently made a decision to just forget about it, and I'm so much happier.  There are boxes and totes and Christmas stuff all over the living room, waiting to get sorted through, waiting to go to the attic.  Finally I just said I'm not doing this, I have no plans to do this.  And I feel better, have more energy.

 

Coop, we're going to see major improvements very soon, don't worry, those symptoms and fears are going to drop away. 

 

 

I don't know why I'm so ridiculously optimistic, because I'm close to finishing 15 months and I'm still no where close to healed.  Still can't do anything other than walk, no gym, no yoga, very, very simple, basic life.  But there's some kind of healing going on, I can sense it, I know it's happening, for all of us, I can hear it in your posts, because I always read, even when I'm not here.  And I'm aware that certain things are dropping away.

 

Try to remember where you were at this time last year.  I was in really, really bad shape.  I was out of my mind crazy, bug eyed, couldn't sleep, couldn't eat, heard crashing sounds in my head, and lots of other weird shit, very bad intrusive thoughts.  I had off the charts anxiety, heart rate and BP scary high.  I couldn't drive much, couldn't leave the house except to run for basics.  I couldn't cook.  We ate take-out Chinese and pizza from Oct 2013 until late spring/summer 2014 when I started using the BBQ.  It still took a while to be able to make a list, buy food, and cook it.  I didn't shower for a week at a time.  I was afraid to go in.  Do not ask me why, lol.  I still have to wash my hair in the sink, it's too overwhelming to do everything in the shower.    I sat frozen on the couch for hours on end.  I did jigsaw puzzles for hours and hours, distraction.

 

So, guys, come on, we're healing!!  You were all very, very bad, too, I remember!  We're healing.  Look how much better we are.

[[Gr...]]

Green, bless your heart for the encouragement. I think I have combed through every success story and I think 90% of them are 18-24 month healers...most 24 months. Some say they started feeling sx drop away and the scraps of life returning around 18 months. PianoGirl had a great success story  too...and Tink's is really encouraging

.......I don't think anyone should feel bad about not working. I have tried to let go of any and all feelings of guilt about what I can not do through w/d....It is really hard not to be able to plan anything with confidence...living one day at a time sometimes adds to the feeling that I am 95 and truly dying. Just thinking about doing an event sometimes causes me anxiety. I have learned ( sadly) to get up in the morning and let the day lead me. I only do simple open ended fun things...things that I can back out of at the last minute if I have to. I have lost friends who don't understand and missed out on events that killed me to miss...but it is what it is...

.....Green you sound like you are holding on to your baseline. I really think that is where we see our real healing...on the baseline between windows and waves. Hoping sick and scared is not my new baseline.

....thank you so much for coming back on and supporting us. ..love love to you Green...thank you for telling us about the nurses...24 months...I am not even thinking about protracted until at least 26 months....off...coop

 

Coop, this kills me, the total unpredictability of our lives. I was losing my life in tolerance, I was getting disconnected, so to speak, so my operation and cold turkey were the shock that brought me back to life and I don't get to live this life I have come back to ?

 

Exactly a year ago, I was so happy to be back to my life,  I signed up for volunteering in a couple of groups and I have cut down to nothing my participation now. It just decreased, instead of increasing and that breaks my heart or at least, leaves me confused, it's counterintuitive. SO now I can do less than  a year ago ? How is that  possible ?

 

Friends, I have lost most of them  but I will work on that when I get better. 

 

Oh, well, have to go now. enough moaning for now !

 

Sky, you're just having a  bad day.  You are absolutely going to live a wonderful life.  This will pass, they all do.

[[Gr...]]

I just wanted to share this with you all.  My friend, one of the nurses I talked about who came off Ativan 15 months ago, I thought she was hanging in there, I told her about our forum, and out of the blue I get a call that she's on Effexor, Effexor of all freaking things.  I felt so bad.  I hope it works out for her.  I thought that was one of the worst ADs. I just got really sad that after all this, all she went through, she gave up and took one of the most dangerous ADs.  What's wrong with these doctors? 

 

so when I heard that I was having a sort of tough day.  And I just shook it off, I was so grateful at that moment to have this forum and all of you,  because without this support, that would have been me, psych drugs, reinstatement, or God only knows what.  So even though we've suffered terribly, are currently suffering, we know there's an end in sight.

[[Co...]]

Green, you are so right. Even though we are gar from healed...so much better in general than last year. Like you, I was bedbound...I was terrified to take the dog out, terrified to take a bath ( what is with the bath/shower phobia.. I have read it over and over), I could not go shopping, going to the doctor was out, having a conversation caused me to panic and get lightheaded, 2 trips to er, health fears 24/7 , dizzy every day ... bizarre intrusive existential thoughts....This last wave has been really really hard...and long lasting. It is lifting ...slowly. ...Looking back on last year I realize that the ability to putter all day and get little ( very little) things done. I have not had a bed day for months previous to this wave. Conversations come easy, but I still can't talk too long or the spacey lightheaded thing starts circling. ...Really what I can't do yet , basically, is get back out there as in re-entry, but I think that will come...just like you said Green ....we are all going to get better...and go to Nova's house ..on the sea and eat chicken stew...lol....thanks so much Green...Wishing you effortless mind days.....love to you....coop

[[Co...]]

Me too Green, I would have reinstated too if I hadn't been on this forum ....and everyone here...

[[No...]]

Green ... yes ... I know getting out would be helpful ... and the footing has been very poor this past week and the wind has made things very cold ... I miss being out ...

 

And things will be improving soon ... I stayed up late last night, late for me anyway ... and got a few hours sleep ... woke up very "congested" ... that is easing, and I feel like the beast is waiting in the background ... waiting to pounce again ... we'll see ...

 

It is -22 C with the wind here this morning ... the converter says -7 F ... and will not warm up much today ...

 

Hoping everyone has a pleasant day ...

 

[[Sk...]]

Green, you are so right. Even though we are gar from healed...so much better in general than last year. Like you, I was bedbound...I was terrified to take the dog out, terrified to take a bath ( what is with the bath/shower phobia.. I have read it over and over), I could not go shopping, going to the doctor was out, having a conversation caused me to panic and get lightheaded, 2 trips to er, health fears 24/7 , dizzy every day ... bizarre intrusive existential thoughts....This last wave has been really really hard...and long lasting. It is lifting ...slowly. ...Looking back on last year I realize that the ability to putter all day and get little ( very little) things done. I have not had a bed day for months previous to this wave. Conversations come easy, but I still can't talk too long or the spacey lightheaded thing starts circling. ...Really what I can't do yet , basically, is get back out there as in re-entry, but I think that will come...just like you said Green ....we are all going to get better...and go to Nova's house ..on the sea and eat chicken stew...lol....thanks so much Green...Wishing you effortless mind days.....love to you....coop

 

True. Some things are so much better, but what is the bath thing ? Last year I was terrified, just terrified and now, it takes planning, careful planning.

 

Peace was talking about DR and I have to say, I  have gotten more used to it, but it's still really going on in  a heavy way. Just freaks me out less, I guess.

 

Green, so sorry about your nurse friend, that is awful. It's good to remind us that what we are doing is not easy, nobody thought is was, but you know what i mean, we have to take the time to appreciate how hard it actually is.

 

Today's daily special, is anxiety without vibrations. But the day is really beautiful, nice and sunny.

 

Have a  nicer day, everybody.

[[No...]]

Good Morning Sky ... glad you are having pleasant weather ... I seem a little obsessed with it lately ...

 

Hope your "daily special" gets sold out real quick ...

 

Wishing you an enjoyable day ...

 

[[No...]]

This is odd ... feeling lousy ... got bundled up and went out for a walk with my walking sticks ... Nordic poles ... great for winter stuff ... out for 25 minutes and could have gone on further but started getting cold ... its now -22 C with wind chill ... enjoyed myself ... did not have heart attack or stroke ... always a bonus ...

 

Came back in ... and everything is still revving ... go figure ... will go out again this afternoon ...

 

Things are not as harsh as yesterday ... but still the dr ... congestion ... benzo guts ... and the always around head pressure ...

 

Maybe I should take up winter camping ... 

 

Have a good Sunday Folks ...

 

[[Sk...]]

Nova, about those sticks for walking, what are they actually supposed to do ? What are they for ?

 

Glad to hear you enjoyed your walk, sounds nippy ! Have a lesson in 5 minutes, have to go.  Take care.