12-18 month support

[[No...]]

Sky ... yep ... there is certainly anger and a large dose of frustration ... and we keep going ... us "hamsters" need to stick together ... 

 

[[He...]]

HH, today too I feel so angry and tired and childish and, and, and more !!

 

I have had some really bad last days, and I am exhausted. ANd I need to vent, but i have been venting forever, 15 months of venting, arrgh.

 

My palps are wild, my mood bounces around and my vibration are back and my handwriting is crazy again.

 

SO I am just so angry. It's because of my period, but you know ? there always seems to be a reason . ANd then there is the 15 month wave, and then the big 16 month wave. I don't know if there are really these waves, I am just saying I feel like a hamster running on  a wheel.

 

When do We get to catch some breath ? I have been running on a wheel for 15 months, not even the happiest of hamsters would want that. SOrry, but my day was pretty horrid.

 

Sky, it just really sucks.  I am SO done with this process, but there is NOTHING I can do about it!! I'm trying to tell myself that someday I will be through it, but I'm having a hard time believing it right now. I, too, am on my period, which ALWAYS brings a wave....but you're right, it's always something.

 

My ability to cope seems to be slipping, and that is worrisome.  :'(

[[Co...]]

HH, Sky and Nova....well we have quite a little Breakfast Club here this morning. I was awake all night too..I slept from 4-6 and now have a headache from hell....Sky I am also 15 months and Nova, I think you are closing in on month 16?....HH I am with you with the torture of having good days crashed up onto the rocks when the waves roll in . I was really feeling the healing ...now a 13 day wave...the worst since month 6/7...I spent a few hours last night reading success stories and progress logs.  Nit very many people healed in the first 12 months..  ...a mojority of people were done , with thier total lives back ...work, relationships, love of life...everything by month 24....I am trying to concentrate on that.

......Sky, HH and Nova...I am sending you huge hopes for relief from the waves today...love, coop

[[He...]]

I sure wish our Breakfast Club could meet for coffee and laughter, rather than tears and commiseration....but I'm sure thankful you're here. We have to prop each other up because we are just bone weary.

 

Love to you! 

[[je...]]

HH-- I completely agree with you, this second year is proving harder for me too despite feeling better. I think its because we are so exhausted, and I'm feeling discouraged.... I keep thinking about lostdogs success story-- he said months 12-18 were the hardest because you are so tired, after 18 months he said he was on auto pilot just getting through each day but not seeing any real healing, then by 24 months he was healed... We are all close.. Jenny

[[No...]]

Laughter ... did I hear someone say laughter? ....

 

What's dangerous and lives in trees? ... a psychiatrist with a prescription pad ... 

 

Well, I tried ... not feeling sharp at all today ...

 

Okay ... another one ...

 

I am feeling so low today I need an parachute to step off the curb ... 

 

As my wife says ... I am trying ... very trying ...

 

Maybe I should give Whoopi a call and get some new material ...

 

Hang on, Folks ... tomorrow is the first of February ... and if the groundhog doesn't give us an early spring he is dinner ...

 

 

 

[[Te...]]

Hello buddies wondering if I could join in. I'm a year out except for 4 days in July when took benzo for 4 days was told it was a muscle relaxer...not in benzo family ...but it was generic brand of Xanax....thank you......doctor...

 

Anyway Im struggling.....super bad......need to know I'm not alone....love to join ....

 

 

[[No...]]

Texas Mama ... please join in ... we are an eclectic bunch .. some of us have been together for a while ... and of course everyone is welcome to this haven ...

 

You will find some pretty remarkable folks here ... and lots of encouragement and compassion ...

 

[[He...]]

HH-- I completely agree with you, this second year is proving harder for me too despite feeling better. I think its because we are so exhausted, and I'm feeling discouraged.... I keep thinking about lostdogs success story-- he said months 12-18 were the hardest because you are so tired, after 18 months he said he was on auto pilot just getting through each day but not seeing any real healing, then by 24 months he was healed... We are all close.. Jenny

 

Jenny,

I keep thinking of his story, too. Some days it seems so hard to believe that this will ever be done, but then other days I feel completely healed. I try to dig deep and rely on all the things I've learned through this process (this will pass, it's just a feeling, you're not dying, ect), but I'm finding my reservoir very, very shallow at this point. I've just came off 3 weeks of feeling good 80% of the time, and instead of feeling more able to handle this wave I almost feel LESS able.

 

I no longer feel mentally sick, I feel physically sick. It seems like, for me, the physical symptoms will be the last to leave.

 

We are close. I'm hanging on to that...

HH

[[Co...]]

Dear Texas....jump on board...this is a merry band of survivalists...helping each other through year 2. Doesn't matter what your medication of torture was...Welcome...as you can see, it's a tough day for some of us but in the next few days we will be hearing of improvements. This is a wonderful group of friends here. I never would have made it past 6 months without these buddies. Welcome, and it will get better. We all seem to have month 24 in our sights . If you read the success stories and progress logs you will see that a majority of people in recovery are living thier lives again at month 24 or somewhere around that time frame...give or take.

.......We will walk all the way with you....coop

 

[[He...]]

Hi Texas Mama,

Welcome!

Nova's bringing the laughter and I'm brewing some coffee (decaf  ).

[[Co...]]

HH...,yep...bone tired....thank goodness we can find some respite and support with each other.

....Jenny....thank you for the reminder of Lostdog's story...there are so many days in which I live from one success story to the next.

....Nova.. what would we ever do without you...humor and wisdom even when you are suffering...thank you so much for being here....

.....Wishing all of us improvements today...coop

[[No...]]

Folks ... yes some of us are exhausted and physically sick ...

 

And ... our reserves are deep ... inexhaustible ... there is no bottom to that well ... it never needs replenishment ... we have all that we need ... and when we are feeling alone and discouraged and frightened, we have each other ... and when I may not have the energy to drink from this well in the moment there is someone always there to dip another cup for me ...

 

Nobody gets left behind ... all you need to do in the moment is say "I am thirsty" and someone will dip a cup for you ...

 

 

 

[[Co...]]

Nova, that is so beautiful.....thank you. ...Really hoping for some sunbreaks for you today....love to you...coop

[[Te...]]

Thanks for the warm welcome..

 

You all sound like a wonderful supportive group...

 

....this will help me ..........I'm sure.....

 

Texan.....

 

 

[[Co...]]

Just an fyi, ....there is a very encouraging success story by Mathewonline.  page 9 of the success stories. ..He posted at 2 years, 2 weeks 2 days off.  Describes his waves as sequentially worse from one to the next, slow pattern of improvement, chronic discourage mentioned . .and totally better at 2 years

....I think we we can heal at any point. As someone said earlier...you never know what tomorrow will bring.. and it could be the day you heal.. but for some of us this week has been fraught with feelings of " when when when will this end.  Will it ever really end. 24 months for me, seems like the next goal post to focus on .  If I cross the finish line sooner I will be shouting from the rooftops. 24 months seems like kinda of a sure shot , taking from the success stories and the Canadian addiction specialist's summary.  An end in sight kind of flagstone..Hoping....and pretty much believing as I sit here swirling in anxiety and health fear.  ...coop

[[Sk...]]

I sure wish our Breakfast Club could meet for coffee and laughter, rather than tears and commiseration....but I'm sure thankful you're here. We have to prop each other up because we are just bone weary.

 

Love to you! 

 

COffee and laghter sounds good, HH !!! I wish that too, obviously !

 

Thanks everybody for bearing with me earlier.

 

Talking about mood swings. After my post, I went out for a bike ride, a nice long ride in the countryside. It must have been the cold, quite cold here, but something in that nippy air, froze my thoughts and there was a  little calm, or whatever passes off as calm these days.

ANd then, we went to have a cup of latte with a splash of coffee ( latte macchiato ) and a chocolate croissant. The chocolate was warm, and sort of spurted all over me and it was really  delicious, I hadn't had chocolate in over 15 months.

And my brain reacted wonderfully to it, and from then on the afternoon was really nice. Mr Sky and I even went to the shops, I tried a coat on, just like in normal life. I have not thought of clothes in 15 months, I have not cared, I have not thought about goofing around and trying things on, just for the fun of it, in ages.

 

Guys, economically this thing has been a blow for me, so just to be able to entertain the idea of buying something,  was amazing. I was mentally punishing myself," I have done this bad thing, I don't deserve anything nice"" .

 

Anyway, it was nice but I don't like  seeing my mood going from one excess to the other. But I had to share with you guys.

 

Have a nice day you all, I am logging off, my writing is still very bad.

 

Thanks again.

[[Co...]]

Sky.., your post has tears rolling off my face because I am so happy for you...you deserve it so so much...and because it so sweetly illustrates how much benzo w/d robserved us of ...every day moments like shopping g for a coat, having a lathe and a sweet moment with your husband ..or wife..or child..or friend...and how much we treasure these every day moments because we wait so long...over and over for the taste of coffee.  a glass of wine...a bike hike, a good night's sleep ..in some twisted way w/d enriches our lives ...Sky.. that is just such great news ...healing ...enjoy....coop

[[pe...]]

I'm here and reading everything. I'm sad for all the symptoms I'm reading, but I'm surprisingly not discouraged. You are all amazing, the most amazing humans I've ever had the pleasure to know. Who can do this silent torture day after day? We can, we do. It's nothing short of amazing. And I hold tight to all the lines that you've given me, maybe 'no one gets left behind' resonates the most. We have seen each other through so many waves and cheered through so many windows. I find myself at a loss for anything new to say. Keep going. I love and admire each of you. That's the basics of it.

 

I hold you each while I read your posts. I want to hug Jenny in person and Coop and Sky (with her chocolate croissant!) and Green and Nova and HH. Oh, my goodness it feels like forever and so many exchanges and patience and love. And all of the people who've joined us and left us. All equally amazing. These are good threads that Coop and Green started. If we have to go through this 'bad' thing, this is a good place to be.

 

My youngest son is three and a half and laid out on the couch with the flu. He's been vomiting all day and we encourage him not to be afraid, to listen to his body, trust that it's working toward wellness. And he's amazingly calm and just observes what his body is doing and what it feels like. What a little teacher I have in front of me.

 

I hope the next posts are the turn around posts. I hope to hear about your sun breaks. But it's ok if we take more time. Because we've done this for so long. And that length feels like it could break us, but it won't. Despite our whining (I win first prize) we are made of beautifully strong stuff.

 

Bless you all and the better days ahead.

Peace2

[[Co...]]

I must be more of a mess today than I thought. Peace ( lovely Mighty Girl), your post made me cry again...such beautiful words. You have such a command of words. You are sounding good. I was wondering where you were. I surmised that you were busy living your life..

....So sorry to hear that your little guy is sick. Hope he is on the mend very soon...thanks Peace , for posting to us.. coop

[[No...]]

Peace ... thank you for your post tonight ... and you too, Sky ... good to hear from the other side of the sea-saw ...

 

I am mostly wrung out tonight ... just old fashioned tired from all this to and froing ...

 

This is the last Saturday in January ... hope the ones in February are more to my liking ... for me, it has been a long, long month ... they say February is shorter ...

 

Last year at this time I was crashing through acute ... and I am fascinated by how I got through it ... now I feel a little wimpy just enduring this stuff ... how easily I forget ...

 

Have a good evening, Folks ... hope we all get some restful sleep ...

 

[[Fr...]]

Hi Everyone,

 

I'm sorry to read of everyone's waves and difficulties.  I am not doing well at all and losing hope.

 

Here is what I posted on another thread (below after the asterisk).  I seem to be an extreme case in terms of symptoms. If I could be on a medication that would help I would try it because this is so brutal.  I see no change from day one.

 

My husband and sons keep me going.  I am ready to be done.  My husband said it all the other day; he looks for the "tender mercies" in our days, a meal together on a good day out, when we laugh a bit or watch a tv show or movie together, days I can get out with him and attend church together.  I miss my sons.  I miss my mom and sister.  I miss my friends.  I'm so lonely and don't feel like myself anymore.  I miss my artwork and teaching my poetry class of friends.  I miss reading  poetry.  I miss so much and don't know if I'll ever get my life back even to a moderate degree.

 

*

 

I am a mess and so worried that I'll never heal.  Every other day I'm in a wave for 18 to 29 hours, and they are brutal.  Then I'll feel good for 24to 32 hours.

 

In waves, I have burning nerve pain in my knees down to my ankles, like my cns is overactivated (it's extreme).  My neck gets so tight I can barely bend it and lately my swallowing feels weird like something is stuck in my throat.  The neck is so painful too and it goes up into my brain which is the worst pain of all.  All I can do is lay in bed and wait to die.

 

I don't mean to be morbid and not being histrionic when I say that I beg God to take me and on wave days look up articles on self dehydration because that seems natural.  I discuss my feelings with my therapist weekly and she says it's all normal and everyone heals---which of course I don't believe because this has gone on steadily for 11 months with no signs of it letting up.  I tell my husband every other day of my plans and what stops me is that the wave ends and I feel much better and feel like eating.  He force feeds me and tells me he wants us to be together in heaven one day and he worries I may go to hell.  In my stubbornness, I tell him that starving is natural, not violent and that I want him to have a better life.  This has taken a toll on his health as well.

 

That gives you a picture of what it's like in my household and what my wd is like.

 

That's why I love hearing when people are feeling better even though they are still struggling somewhat.  One the infrequent days when I have severe pain but no brain symptoms, or overactive cns up there and all over, I consider that a good day. 

 

I will feel healed when I feel my life is worth living because I'm not in agony anymore.

 

Yesterday was a good day; we ate out, even saw a movie and enjoyed our "tender mercies" together.  I was happy to be alive.  Today is beyond rough again.  Same pattern.  Over and over.

 

How does this break up typically?  All I see is an endless nightmarish pattern.  I was a beautiful artist and poet once.  Now I'm a sick person.  I can't relate to who I am right now.  On wave days I just lay in bed with a neck massager, heating pad, grit my teeth and count down the hours and watch mindless tv shows.  I used to sit and do some artwork but lately even that's gotten tough to do.   

 

Can anyone else relate to this?

[[Co...]]

Lisa, ...my heart is with you. ...I totally get it. I am in a 14 day wave at month 15 ( Feb3). ...Up until Jan ( month 14) I never had a window that lasted more than 12-36 hours. In Jan I had a real turn around with a 15/16 day improved baseline ( 85-90%) with a few effortless mind days, some windows and sunbreaks. ....Now.  slogging through a long wave. Like you most of my sx return a day or so after feeling better....followed by those good ' tender mercies'  days that you describe. . .My head zaps ( scare me to death) and headaches have come back after letting up for a couple of months. ...I understand the hopelessness ..

....I have been reading success stories and progress logs all day. Lisa, the majority of success stories record thier healing as happening most realiably  between months 18-24. with alot of erratic ups and downs preceeding those months. This week on our board there are several of us beyond the 12 month mark experiencing waves and sx.

    I am so glad that you are getting 3/4 decent days each week or so. Nova, Green and I are all getting beat up with the neck , shoulder and head pain. ...So many BBS refer to sx and waves right up to the day they knew they were better

.....I am so sorry you are still in tough times. I honestly think we are all going to see our lives come back in the next coming months....Wishing you a string of tender mercies days. Our 100% healing  is coming too Lisa...coop

[[Fr...]]

Thanks for your kind words of support Coop.  I'm sorry you're in the midst of a bad wave.  I read your posts and enjoy news of you spending time with your grandchild and seeing kid movies.  I don't have any grandchildren yet but used to love those events with my own sons, years ago, when they were little.  Dumbo always brought me to tears.

 

I read the success stories too.  Sigh.  I'm having the opposite problem to yours---I don't fear death at all, I fear constant suffering.  It's all so difficult.

 

My therapist keeps reassuring me that she has never seen anyone not heal.  Why do I have such a hard time believing her?

 

L.

[[Co...]]

Lisa, it's not you not believing your therapist.  It is the Benzo lie. It's all benzo or you wouldn't feel better on the ' tender mercies days' .

.....Yes, it is often my times with my grandsons that keep me going from one good day to the next. Believe me, if ever there was a reason to slog through this it is grandchildren. I have braved my worst sx ..sx that would keep me not only in my house but in my bed, to see my grandsons or go do something with them.  You will love love love  being a grandmother ....hold on to the good days Lisa.  I have to say that I pretty much can not 'remember' the good days when I am in a wavy day. I have to be reminded over and over that I really am not dying ( health fear is still a torture) ...and that given a little more time it will end. ...

.....I think we will see a big difference by month 18 or so...coop