12-18 month support

[[No...]]

Sky ... hope you are doing well ... and you are taking your time unpacking ... thinking of you ... 

[[Co...]]

Hi Buddies,

 

I haven't posted for awhile, just not feeling well enough to do so.  I like to check in to let you know I'm still here and suffering right along with you.

 

I'm still having sleep issues. Falling asleep at 4am and sleeping off an on until noon. Sometimes I don't sleep at all.  It seems all of us are suffering from sleep issues.  The burning and pain in my lower legs and feet is still with me. It lets up sometimes but never goes completely away.  I found these ice pack socks on line and they really help my feet. I think I got them at FootSmart.  Still having terrible body pains around my ribs. Feels like a someone has me in a bear hug and won't let go.  One rib on the left side feels like it's broken, so I put ice on that.  Last week it was a rib on the right side.

 

I also have the muscle cramps. I use a very low dose muscle relaxer when I'm so cramped I can't walk.  Like Green my brain is 90% back, but my body is killing me.

 

I tried some edible MJ to see is it would help with pain or sleep. Drew was right it's very difficult to control the dosage.  I've never used much MJ before so I wanted to be careful.  I tried some cookie. I took half of the recommended dose. OMG it knocked me out for 8 hrs. I could barely walk and  I was slurring my words. It was really scary. The next day I tried 1/8 of the dose and it made my walking really more unstable and put me in a cog fog.  It did stop my legs from stinging.  I decided that MJ is not such a good idea.  It's helped the pain, but I completely stoned mentally.

 

I'm like all of you just trying to take it one day at a time. It's really hard sometimes. Especially when friends start to question you. Why don't you find a doctor who can help you? There's got to be something you can do.  They just don't get it.  Thank god I found all of you.

 

.......Korbe....I am so sorry that you are suffering like this. It is so hard to live with daily pain. I know how impossible it becomes to believe that healing is happening when pain and insomnia seem to run our lives. I am glad you came on the thread for an update, although I wish you were feeling better. Things will get better... we are all going to heal... we just have to survive until we do.

      I am thinking of you and wishing you sunbreaks and relied..  ...coop

[[Co...]]

Nova....mercy!...  You made some use of insomnia.. I was not far behind....awake at 4, but I didn't get up and make cookie dough and cook....I am watching the news and playing on my phone until the dog catches on that I am

awake..  then all bets are off and I will have to take him out.  Trying to be stealth awake.. 

.... hope your day unfolds in a sunbreak..  enjoy the cookies. 

  coop

[[No...]]

Hi Coop ... got all my errands done ... and didn't end up on the geriatric ward ...

 

And it is hot, humid and sticky out there again today ... hope Fall gets here soon ...

 

"stealth awake" ... my wife is a master at that ...

 

Have a good day ... hope your test results are to your liking ... 

[[Si...]]

Hello all. I have no reason why I don't feel great today still. Partially mental partially physical. I thought I wouldn't sleep last night. I was pretty agitated when I got in bed. My wife gave me a brief aromatherapy massage which helped. I did end up falling asleep at some point, though it took a little while. I maybe got about 5 or 6 hours.

 

Glad you got your errands done Nova.

[[Gr...]]

Hi.  Mental, still 90%.  physical is like trying to wade through thick mud.  I've got one foot in healing, and the other stuck in a bucket of concrete.  I'm not posting much, I'm trying to use the energy I have to do things around the house, and I'm trying as hard as hell not to think about how I feel, or withdrawal at all.  I had a half hour or so last night where this heavy feeling lifted and I felt almost lighthearted. Feels like gravity is trying to suck me into the ground, or the couch, lol.  still believing in healing.  the mental recovery is proof positive.  I can't ignore  that.  And I asked my therapist, how bad was I when I came to you last Feb.  She said so bad cognitively she didn't think the therapy was going to work out.  I felt validated, and I also felt so, so sad.  That was at 15 months I went to her.  and my poor mind was still missing in action.  I cried, I guess I was grieving this experience, what my poor self had been through.  Mostly I've been so busy trying to survive this ordeal, I just couldn't let myself think about how bad it was, about how scary it is to be so damned sick, to be so close to losing your damned mind.

 

I mean to be positive.  I was so, so bad, and my mental, cognitive, is back 90%.  And what success stories say is true, the healing is happening and you never feel it, but it's def happening.  And I know the rest of me will heal in time.  Patience and acceptance and one foot in front of the other and gently push.  We will all get there.

 

......Green, if it's any consolation , today was the first day in 2 years that I have been up .....straight through from 7am to 7pm...I only did every day things, cleaned up my house, did some errands with my daughter, cooked a very easy pasta dinner....folded some laundry....I am so tired and in so much total body pain I could cry. ....Like you, I usually have to pick and choose one thing to do other than the little household tasks I distract myself with. Up until June I was back on the couch by 1 or 2 ....slowly over the summer I worked it up until 4pm.....I haven't moved past 4pm  until today. I actually get depressed looking at my bed. ....But think about it, we have been depleted and in bed or on the couch for 2 years.  that takes awhile to come back from. ...When my clarity came back on board I just assumed my body would come back with it at the same pace....like you, I am mostly dragging it along the best I can. Maybe year 3 for me is going to be about building my body back and being able to stop hobbling and crawling along like a 100 year old woman....If my body  could follow my mind at the same pace I would be 95%....but I think it's going to be awhile....and take some commitment to work on getting some fitness back....

      It's all going to come back Green....just not fast enough ...I am really tired of waiting ....Hope you gor a bike role in....Here's to new couches without butt impressions.....coop

 

Coop, I am so sorry you're hobbling around, too, but so relieved to hear someone else is.  Yes, you're right, it's going to take the body more time to recover.  That's what it feels like, a body exhausted from what it's been through.  I've been focusing on cleaning, not bike riding, lol.

 

How are anxiety and palps?  I'm getting that, pretty mild, though.  And it was very disappointing, wasn't it?  When the mental cleared up, it was such a miracle, and so disappointing the body didn't follow.  But remember, the mental cleared up relatively quick, it seemed.  The physical could go like that, too.

I wish more people who have healed could have posted symptoms more specifically this far out.  There's such a lack of information at this level.  Well, I guess we're doing it.

It's good that you're accepting of a longer timeline.  I'm hoping not so long, though.  Feel better.

[[...]]

Today has been so hard. So busy at work that my brain feels literally fried with the most painful neck. All my muscles are burning, internally too and can't breathe properly. 17 months off today. Just want to curl up and cry. Surely, enough suffering  :'(

 

Sorry for the woe is me.

[[Gr...]]

Hi Buddies,

 

I haven't posted for awhile, just not feeling well enough to do so.  I like to check in to let you know I'm still here and suffering right along with you.

 

I'm still having sleep issues. Falling asleep at 4am and sleeping off an on until noon. Sometimes I don't sleep at all.  It seems all of us are suffering from sleep issues.  The burning and pain in my lower legs and feet is still with me. It lets up sometimes but never goes completely away.  I found these ice pack socks on line and they really help my feet. I think I got them at FootSmart.  Still having terrible body pains around my ribs. Feels like a someone has me in a bear hug and won't let go.  One rib on the left side feels like it's broken, so I put ice on that.  Last week it was a rib on the right side.

 

I also have the muscle cramps. I use a very low dose muscle relaxer when I'm so cramped I can't walk.  Like Green my brain is 90% back, but my body is killing me.

 

I tried some edible MJ to see is it would help with pain or sleep. Drew was right it's very difficult to control the dosage.  I've never used much MJ before so I wanted to be careful.  I tried some cookie. I took half of the recommended dose. OMG it knocked me out for 8 hrs. I could barely walk and  I was slurring my words. It was really scary. The next day I tried 1/8 of the dose and it made my walking really more unstable and put me in a cog fog.  It did stop my legs from stinging.  I decided that MJ is not such a good idea.  It's helped the pain, but I completely stoned mentally.

 

I'm like all of you just trying to take it one day at a time. It's really hard sometimes. Especially when friends start to question you. Why don't you find a doctor who can help you? There's got to be something you can do.  They just don't get it.  Thank god I found all of you.

 

Korbe, I'm so glad you've decided against the MJ.  When you mentioned it in your last post, I was concerned and wanted to say something, but I held my tongue because you're suffering with pain and there was the possibility it would help.  Baylissa puts it in the same category as alcohol.

 

Yes, this is really hard, the hardest thing any of us has ever done.  And, no, friends don't get it.  even the best and the most well meaning ones.  Unbelievably, we're some of the sickest people, if you measure each of our disabilities, our level of function, and there's not a doctor I can go to who will acknowledge this, and how it happened.  Yes, thank God we found this forum.

 

Hoping with all my heart that you get some relief.

[[Gr...]]

Green ... you are positive ... you show up and tell your truth ... what else is there some days? ...

 

Good to hear from you ... 

 

Yup, I cannot tell a lie!  What are you doing up at 2 a.m.?

[[mr...]]

Green, you said:

 

"I wish more people who have healed could have posted symptoms more specifically this far out.  There's such a lack of information at this level."

 

I have said this so often! I think that's why we hear in our heads "this is as good as its going to get", because we don't hear from many others at this stage of the game.

 

Man, thank God for this thread. I may not post much, but y'all help so much! Love you guys.

 

Mrs.

[[dr...]]

Marj-congrats on 17.  Are you able to find/afford a masseuse who is skilled in cranial release type of massage?  It is the biggest help for my neck tightness and headaches.

 

Korbe-hope you get some relief.  Nothing more to say. 

 

Coop and green-I can totally relate. Except in the worst of a wave my mental is so much better but my body is far behind at the point. I'm going to start gentle yoga this week to loosen my muscles and help relax the stress response.

 

I had a good day so far in benzoland.  Headache and muscle tightness gone. Lots of pains left in chest, back,neck, and skull.  It's like all those muscles lifted weights for the last week.  I went to work and while I felt an undercurrent of anxiety and head stuff it's nothing like I was experiencing.  I was able to communicate effectively, chat because I wanted to, and finally shop at whole foods.  Mild anxiety in line but again...nothing compared to the last few weeks.  When I got home I was just able to do all the chores without being exhausted and a racing heart.  How quickly this turns.

 

On another note, my therapist who I only talk w once in a while now says since I'm avoiding so many stress situations he's afraid I'll develop more agoraphobia.    I explained I'm limiting my situations but I'm not afraid of any of them.  I tried the "exposure" way and it was frying me.  I'm not avoiding things just limiting them.  No one has any clue.  If I had a broken leg they'd expect me to run a marathon.  Luckily, with my improving clarity i have my laser focus. 

 

Check in later.  Onward!

 

 

[[dr...]]

Green-you can find them...on the protracted

[[pe...]]

Hi all,

Who thought we'd be here this far out? Urg. I'm back at work full time and it's hard, though admittedly better than last year. My thinking is fairly sound minus the constant dr and unpredictable dark intrusive thoughts. I'm looking forward to all the brain stuff clearing up. It's just been so long.

 

And this idea of where are the posts from people this far out? Where is the light? I wonder that too and also recognize that we are the light. How many people follow us to see what we're up against this far out? I'm guessing it's more than a few. And then I wonder if we shouldn't make a thread that accurately reflects our timeframe 18-24 months or 18-30 months. Not for us but for the people who will come looking for us, just the way we're looking now.

 

I'm two days away from completing month 20 and there is still so much damage, so much healing.

Best,

Peace2

[[Si...]]

I'm definitely feeling terrible today. I guess I'm in a full on wave. Hopefully when this wave passes my baseline will be even better. I'm so over this crap.

[[Co...]]

 

Green.  Yep, we are in the same place , yet again....sx are the same. It is so much easier to reconcile sx when we don't feel that we are the only ones with a specific sx....or return of sx.

    I am not having any real palps. Anxiety was very manageabke.... until today.  Back to spooky acute like anxiety with spaciNess and d/r.  hung on all day. Health fear at about 12 on a scale of 10. I had my follow up for the swallow test.  Some spasms and moderate suspected inflammation..  .aaannnd..  an enlarged lymph node outside the chezt/stomach wall..  most likely a lypoma ( fatty tissue)...completely non-threatening, but because I have had a cancer dx I have to have it biopsied... not sedation biopsy...it's so close to the surface it just needs needle biopsy. Nothing about that really bothers me. It's 99.9% not cancer and won't require medication for diagnosis.. so I am goid with that.  My anxiety today is all w/d. ....all irrational...all the same old health fears just so intense today. I took 12 mg of atenolol before my appointment so I wouldn't have to hear the bp lecture. My bp jumps up to about 170/90 when I go to the doctor....comes right back down to 115/70 when I leave. It worked very well...my bp hasn't gotten past 100/58 all agternoon. I am drinking water with a little salt, eating, moving around alot and trying to stay busy, but I am so lethargic and dizzy and fogged ....waiting for the cog fog to fade..  I know it's the atenolol, it usually doesn't wipe me out this entirely but I haven't taken it for weeks....It will fade

      The anxiety is discouraging, it hasn't been like this in a long time. I know it will let up... in the mean time I am.spaced out living from my bed.....onward....Remember when we were 30 and could just bully our bodies into following commands

  We are healing and our bodies will catch up.. ...

 

Did you read Peace's post. She had a good followup on how helpful it is to follow along in real time with buddies who are in the 18- 30 month time frame. I agree with you Green.. it is so helpful to SEE on a daily basis how people are getting from month 18 to healed....as opposed to just seeing a summation months later in the Success stories. I love the success stories but I also want to know how they moved onward in the last months of healing. Peace was wondering about an evolution of our thread to 18-30 months. What are your thoughts?.  I think we transitioned pretty easily to 12 -18 months . I like the idea but I am happy either way.. It would be a service to those coming behind us to see what 18-30 months looks like during healing.  I like it better than thinking of moving myself over to the protracted board. I am protracted at this point, but I want to stay with as many friendships here as possible...no matter what we decide

    How was your energy today?  ...Tomorrow is another day closer...today is another day done.. that's all the positive I have...  ..coop

[[dr...]]

Coop-I'm sorry the benzo beast left my cave and took up residence at your dwelling. 

I'm sure the dr apt didn't help and hopefully this will break much quicker than in the past.

 

Sig-sorry you're under the covers still.

 

I don't ant to follow anyone to another thread.  This is it for me until my success story

[[Co...]]

Peace....I am still getting bouts of intrusive thoughts too.  It's like pulling a veil of death across my life..  so hard to connect to them to deal with them because they literally don't feel like they belong to me or come from my head.  Completely disorienting and consuming. Mine usually only last a half day or a day at the most... thank you God. 

      Peace, I am so much better at 22 months than I was at 20 months....still have wavy days but nothing like months 4-20. We are going go the distance and we are very close.

      I like your thoughts about extending our thread to 18-30. It will be interesting to see how others chime in. This is what I know, whatever we call ourselves, I still need this group ... and I still want to support my friends in this group.

    Peace, I am wishing you a break in sx..  So glad to see you here when you have time to update us..  coop

[[Co...]]

Marj-congrats on 17.  Are you able to find/afford a masseuse who is skilled in cranial release type of massage?  It is the biggest help for my neck tightness and headaches.

 

Korbe-hope you get some relief.  Nothing more to say. 

 

Coop and green-I can totally relate. Except in the worst of a wave my mental is so much better but my body is far behind at the point. I'm going to start gentle yoga this week to loosen my muscles and help relax the stress response.

 

I had a good day so far in benzoland.  Headache and muscle tightness gone. Lots of pains left in chest, back,neck, and skull.  It's like all those muscles lifted weights for the last week.  I went to work and while I felt an undercurrent of anxiety and head stuff it's nothing like I was experiencing.  I was able to communicate effectively, chat because I wanted to, and finally shop at whole foods.  Mild anxiety in line but again...nothing compared to the last few weeks.  When I got home I was just able to do all the chores without being exhausted and a racing heart.  How quickly this turns.

 

On another note, my therapist who I only talk w once in a while now says since I'm avoiding so many stress situations he's afraid I'll develop more agoraphobia.    I explained I'm limiting my situations but I'm not afraid of any of them.  I tried the "exposure" way and it was frying me.  I'm not avoiding things just limiting them.  No one has any clue.  If I had a broken leg they'd expect me to run a marathon.  Luckily, with my improving clarity i have my laser focus. 

 

Check in later.  Onward!

 

......Drew, I  so glad to hear that you got some relief from the tight vice grip of upper body muscle pain. ..I totally get that you are reducing some stress in your later months of w/d. That is so hugely not avoiding. You have gone to your performances over and over and to work on days that kill a 'normal' non-w/d person and you come back from it beat up. IMO ...avoidance is when you don't go because you are afraid to go....you go every time WITH and in spite of health fear and massive headaches. Sometime practitioners are so married to whatever theory they are practicing g from that they can't see beyond it...I don't mean that in a criticizing way....You know yourself better than anyone else. W/D is much more layered, I think, than avoidance and agoraphobia...

......Ok...so that's one voice for not extending the thread...duly heard and noted......thank you for your kind words and support, if my new pattern holds up I should start feeling better tomorrow and a lot better by the next day....I feel like I got whacked by the flu....onward .....Wishing you a really good evening Drew, it is so owed to you.....coop

[[dr...]]

I'm fine w the new thread if we just change the name and all jump over and abandon here(maybe ask Colin to stop new replies on here).  That way we lose no one.

[[Co...]]

I'm definitely feeling terrible today. I guess I'm in a full on wave. Hopefully when this wave passes my baseline will be even better. I'm so over this crap.

 

....Siggy.....I am right there with you....so sorry you are getting hit with lousy after some better days a few weeks ago....it stinks....I was thinking I might be close to real healing a week ago....shake up the snow globe....here I am with benzo flu and anxiety like acute.....nothing to do but keep moving onward. I just don't see any other road markers.  Hoping we both feel better tomorrow....Wishing you sleep.....coop

[[Co...]]

I'm fine w the new thread if we just change the name and all jump over and abandon here(maybe ask Colin to stop new replies on here).  That way we lose no one.

.......

 

.......What if we asked Colin if we could go in and "amnend' the thread title to: ...13-18 ( 30 ) ....or something like that....I am good with changing ...or not changing....it's hard for me to think it through right now with my head thick with cog fog....

.  . Glad to host Benzo Beast at my house for a night if it means he's out of your place for awhile....lock your doors.....don't answer your phone.....coop

[[Co...]]

Today has been so hard. So busy at work that my brain feels literally fried with the most painful neck. All my muscles are burning, internally too and can't breathe properly. 17 months off today. Just want to curl up and cry. Surely, enough suffering  :'(

 

Sorry for the woe is me.

 

.....So sorry Marj....17 months is such a very long way...crying.  helps....alot. ...Did it let up at all after you got home? ...I hope you get a walk in ( if you feel up to it) and have chance for a hot soak. .....I am thinking of you.  ....Wishing you a better day tomorrow and a peaceful night......coop

[[Co...]]

I'm fine w the new thread if we just change the name and all jump over and abandon here(maybe ask Colin to stop new replies on here).  That way we lose no one.

 

....Yes, I would be willing to jump to a newly named thread....if  everyone jumps over....I think that's what we did when we transitioned from 6-12 to 12-18....it took a few days to 'move' but here we all are.  ....coop

[[Si...]]

Thanks coop and drew! Yes it's been a tough week for me. I'm sure this wave was started by my getting a cold. Hopefully it will sputter out soon.

 

Thankfully I'm having a good time with our friend staying here. He's an actor and is moving back to Atlanta for better job opportunities. He does a lot of theater productions, but also does TV, movies and commercials. He got some updated head shots which look great. The film industry is really picking up a lot here in Georgia. They're building a studio about 5 minutes from our house. So he's having a great time being back.

 

Sorry you're having some issues coop. I'm sure they'll sort out soon. Yes benzo flu is beating me down. That's a good way to describe it. I'm with Drew though. I'll probably stick with this board (I say that now but that could change). I'm for sure scared of ever joining the protracted forum. Is after 18 months considered protracted? 

[[Si...]]

If everyone else jumps I'd probably be willing to. But I'm still 2 months from 18.

 

Congrats on 17 Marj. It's a long way to come. I barely right behind you.