18 - 30 Month Plus Group

[[Lo...]]

Its ok Marj im right here in the trenches with you. Its ok to post when you arnt well, there is no pressure to be better. If we were all well nobody would be here and we are all here to support each other 

 

I have read your post a few times and everything you are saying IS typical WD symptoms. I know its hard not to freak out with the intensity and the shifting of symptoms but its typical WD even this far out . I have read many many posts over the years of people 2 - 3 years out freaking because they hit an acute wave or shift in intense symptoms. I didnt believe it then but oh lordy i believe them now.

 

Do yourself a favor and try not to freak out, you have made it through 3 years of this shit and if anything bad was gonna happen it wiuld have happened a long time ago.

 

Go get yourself checked out and it will put your mind at ease. I found my anxiety level dropped tremendously when i had all my tests done and was given the green light. Keep strong Marj i am so sorry you are getting beat down too.

[[Lo...]]

Thankyou Sofa. You really are one of my anchors 

[[bc...]]

So sorry that so many here are suffering and trying to claw their way back from being hit with unbearable sxs.    I, too, am in the trenches.....trying to survive thru each day of sxs is really wearing on my mind and body.  The 24/7 anxiety, dp (feeling totally not ''me''), tremors, unable to sleep much because of the adrenaline/cortisol surging thru mind and body, horrible looping negative thoughts....and seeing no let up in any of this has really scared me.  Some of the sxs I thought were gone have come back again for a visit....and I know how disheartening it is to deal with them again.  Have never had a 100% clarity ''me'' window so have no idea if I am actually in here somewhere or not.

 

Sorry to be such a downer....but this seems to be my day ....everyday.

 

Hoping and praying for healing for us all real soon........hugs

[[sl...]]

Hi buddies.  I've been reading how you are all doing.  It looks like at least a few of us are miserable.  Sofa, how are your mornings lately?

 

I swear, I do everything I can to cope with living like this.  I treat myself like a  fragile being that I currently am; yet, I still suffer so horribly.  Last 2 nights have been straight out of a horror book... Just like the early days.  I had a long stretch of no dry heaving, but the intensity of the shocks and everything else is so damn strong that I'm very sick and having diarrhea too.  Pacing and rocking like a maniac is back.  Unable to even sit at the dining table like this.  I'm struggling with this new revelation that, yes, everyone in protracted who said they felt very sick 2-3+ years out were not exaggerating!  I could barely believe it until recently.  Certainly they must have had something else wrong with them... Or they were drinking or taking pills.  But, here I am... One of them now!

 

How often (if ever) do any of you get very intense, acute symptoms back?  If so, do they last very long?  My last intense wave in april (without the dry heaving and pacing) lasted 2 weeks.  I can't keep at this!  My waves are not getting shorter with time.  I'll have a wave and then usually a moderate break for a few days (2 weeks is my longest stretch). 

 

 

 

 

[[...]]

Its ok Marj im right here in the trenches with you. Its ok to post when you arnt well, there is no pressure to be better. If we were all well nobody would be here and we are all here to support each other 

 

I have read your post a few times and everything you are saying IS typical WD symptoms. I know its hard not to freak out with the intensity and the shifting of symptoms but its typical WD even this far out . I have read many many posts over the years of people 2 - 3 years out freaking because they hit an acute wave or shift in intense symptoms. I didnt believe it then but oh lordy i believe them now.

 

Do yourself a favor and try not to freak out, you have made it through 3 years of this shit and if anything bad was gonna happen it wiuld have happened a long time ago.

 

Go get yourself checked out and it will put your mind at ease. I found my anxiety level dropped tremendously when i had all my tests done and was given the green light. Keep strong Marj i am so sorry you are getting beat down too.

 

Lockie your kindness and support made me cry, how we survive this day after day beggars belief. Thank you and the same to you too 

 

Sofa is my anchor too amongst her own suffering 

[[Fi...]]

Lockie--I fell into the pit you describe over and over, often coming out as you describe, feeling I was well and that was it, only to fall back into the pit.  Nothing to do but endure, live through it, and you will come out the other end.  Thank God it's been a long time since I've been in that pit (like a year?) but it was shocking how it could keep happening even as I healed.

 

Sometimes it disturbs me to see people using the word "fight" so much.  I think fighting and struggling  against this just makes it worse.  Somebody else used the word radical acceptance and I think that says it.

 

Everybody--be kind to yourselves by doing and thinking the things that make you feel a little better and give you comfort.  Stay away from situations that only stress you without delivering anything positive.  Please avoid beating yourselves up because what you are doing is extremely difficult and you are having to be very brave.  Try to take baby steps to engaging with the world beyond BB.

 

I know wellness is almost impossible to picture, but you will get there, and I can't tell you how good it feels to get up in the morning with a whole list of things to tackle and the energy to do it.  Must get to it!

[[sl...]]

Bcalm,

 

This is so difficult.  I think running a marathon, barefoot in 100 degree weather and no water would be far more enjoyable than this.  We should all be able to pass our hell onto a deserving criminal... Like the subway guy.  He probably sleeps well at night and sits around talking about pedophilia with the rest of the creeps.  Ugh!! Oh, and to think there are far worse criminals who never suffer a single day in their lives!  This 2 year sentence I've had is worth 30 years in Guantanamo bay!! Nobody can ever imagine even in the slightest the hell I've walked through!

 

You reacted to these damn pills immediately like I did.  It's crazy that there are people who took them for 20+ years and recover much quicker than us!

 

Sorry for exploding my frustrations.  I'm feeling like a loose cannon today!  Life is NOT FAIR!!

[[Lo...]]

Lockie--I fell into the pit you describe over and over, often coming out as you describe, feeling I was well and that was it, only to fall back into the pit.  Nothing to do but endure, live through it, and you will come out the other end.  Thank God it's been a long time since I've been in that pit (like a year?) but it was shocking how it could keep happening even as I healed.

 

Sometimes it disturbs me to see people using the word "fight" so much.  I think fighting and struggling  against this just makes it worse.  Somebody else used the word radical acceptance and I think that says it.

 

Everybody--be kind to yourselves by doing and thinking the things that make you feel a little better and give you comfort.  Stay away from situations that only stress you without delivering anything positive.  Please avoid beating yourselves up because what you are doing is extremely difficult and you are having to be very brave.  Try to take baby steps to engaging with the world beyond BB.

 

I know wellness is almost impossible to picture, but you will get there, and I can't tell you how good it feels to get up in the morning with a whole list of things to tackle and the energy to do it.  Must get to it!

 

Thankyou FJ its great to hear from a buddie that has been there then healed and moved on. Congratulations and i wish you all the best in the future 

 

Marj we are all in this together and you are welcome.

 

Sleepless and becalm. Hang in there buddies, windows (or days of less suffering) are coming. You guys are badass and hard as nails.

 

Sofa thanks for being my leaning post.

 

 

[[bc...]]

sleepless......don`t be sorry for airing your frustrations.....I am right there with you.  A prison term might be better as we wouldn't have to deal with all of these sxs.....at least we would have our peaceful minds and bodies and not have this torture that we are going thru.

 

Lockie.....thanks for the encouragement.....waiting IMPATIENTLY for those windows....hope your days start to get better

 

Marj....hope things get better for you thru the day.....I know how hard it is to keep your head above water.....I feel like I am always drowning.

 

sofa....thank you for your comforting and reassuring message....you always have such a good explanation of what is happening....just wish my mind could grab onto that rather than all of the negative thoughts that keep spiraling thru.

 

FinallyJoining63.....thanks for your kind message of hope and reassurance.....we all hang on to those words.....

 

 

[[...]]

Bcalm,

 

This is so difficult.  I think running a marathon, barefoot in 100 degree weather and no water would be far more enjoyable than this.  We should all be able to pass our hell onto a deserving criminal... Like the subway guy.  He probably sleeps well at night and sits around talking about pedophilia with the rest of the creeps.  Ugh!! Oh, and to think there are far worse criminals who never suffer a single day in their lives!  This 2 year sentence I've had is worth 30 years in Guantanamo bay!! Nobody can ever imagine even in the slightest the hell I've walked through!

 

You reacted to these damn pills immediately like I did.  It's crazy that there are people who took them for 20+ years and recover much quicker than us!

 

Sorry for exploding my frustrations.  I'm feeling like a loose cannon today!  Life is NOT FAIR!!

 

 

Hey, don't apologise for exploding your frustrations, it's better out than in. There is no doubt about it, this is hell, it's real, we live it day after day. I know we feel impatient, weak, like we are failing somehow, but we are not, far from it. Some get hit really hard and you have little kids, that takes some strength. Your feelings are validated, natural and universal in this state. One day it won't be like this and I know that's not easy to for see.

 

 

[[so...]]

Sleepless,

 

Thanks for asking about me.  My mornings are still exactly the same.  3am wake up alarm full of raging cortisol, heart racing and head pulsing.  No change.  I do appreciate your kindness for asking.  I wish I had better news to report.

 

Sofa

[[sl...]]

Lockie and marj,

 

Thanks.  Don't know if I'm badass, but I know that I will have graduated with many degrees from the university of hard knocks.  One for patience, one for being smarter than the doctors, one for human suffering, an ADVANCED degree in human suffering... 

 

Sofa,

 

Sorry you are still dealing with it.  When was your last improvement?  Are you still getting about 6-7 hours sleep? 

 

To all,

 

Do any of you make videos?  I've made about 7 so far... And just did another today.  Finally addressed the  damn doctor in this one.  Plan to drop it off to her someday so she can see how sick and terrified I really was/am.  So glad she got me sick first before getting her slimy dart frog hands on my daughters!

[[Si...]]

Lockie and marj,

 

Thanks.  Don't know if I'm badass, but I know that I will have graduated with many degrees from the university of hard knocks.  One for patience, one for being smarter than the doctors, one for human suffering, an ADVANCED degree in human suffering... 

 

Sofa,

 

Sorry you are still dealing with it.  When was your last improvement?  Are you still getting about 6-7 hours sleep? 

 

To all,

 

Do any of you make videos?  I've made about 7 so far... And just did another today.  Finally addressed the  damn doctor in this one.  Plan to drop it off to her someday so she can see how sick and terrified I really was/am.  So glad she got me sick first before getting her slimy dart frog hands on my daughters!

 

I've never made a video, but I've thought about it. Are you meaning on YouTube, or just for a personal video diary?

[[sl...]]

Siggy,

 

Just personal videos... I'm not brave enough to share this publicly, yet.  If I ever heal, I intend to though.  I wish I had documented the first few months off!  I looked like I had an invisible person torturing me. 

[[Si...]]

Siggy,

 

Just personal videos... I'm not brave enough to share this publicly, yet.  If I ever heal, I intend to though.  I wish I had documented the first few months off!  I looked like I had an invisible person torturing me.

 

Ha yeah, that makes sense. It would be interesting to see I think too. Although I'm not sure how freaked out I would be by it. Strangely as far as I can tell nobody at work really noticed a difference. Which doesn't make sense because a lot of those days I hadn't slept most nights.

[[Lo...]]

Lockie and marj,

 

Thanks.  Don't know if I'm badass, but I know that I will have graduated with many degrees from the university of hard knocks.  One for patience, one for being smarter than the doctors, one for human suffering, an ADVANCED degree in human suffering... 

 

Sofa,

 

Sorry you are still dealing with it.  When was your last improvement?  Are you still getting about 6-7 hours sleep? 

 

To all,

 

Do any of you make videos?  I've made about 7 so far... And just did another today.  Finally addressed the  damn doctor in this one.  Plan to drop it off to her someday so she can see how sick and terrified I really was/am.  So glad she got me sick first before getting her slimy dart frog hands on my daughters!

 

Here is my videos Sleepless. i watch the first one and cant believe how sick i am and totally in denial. The other two im in "windows" and feeling quite positive before promptly crashing afterwards lol.

 

 

https://youtu.be/NrhEDdQOTjY

 

https://youtu.be/wQBZaXEsrfE

 

[[so...]]

Sleepless,

 

Yes my sleep came back after a sketchy 3 week period.  7 hours of sleep again, and I am grateful.  I know how hard waking up every hour or so through the night is.  I have always known how tough you are, how you have dealt so bravely with all this crap.  It will get better for you soon.  It's around the next corner.

 

Love, Sofa

[[HO...]]

Sleepless how long did you taper for?

[[sl...]]

Lockie,

 

I remember seeing those videos.  I'll have to watch them all the way through again now that I know it's you.  Thanks for sharing. 

 

Sofa,

 

Glad you are sleeping well again.  I'm praying so hard for at least 5 hours consistently.  My monthly average has remained close to 4 hours sleep since month 6.  No improvements at all.  So discouraging when I keep getting nights of less than 2. 

 

Hope,

 

My taper was over a 2.5 month span, from .5mg to .15ish. 

[[so...]]

Sleepless,

 

Although 4 hours average doesn't seem like enough sleep, it is enough to survive and stay healthy.  Your sleep will eventually return.  Mine was bumpy for a long time.

 

Hang in there,

 

Love, Sofa

[[...]]

I just dont understand as Im sleeping better but feel so bad. Im convinced there must be something else,  I know Im a broken record but this is literally killing me,  I scared of another day of it. Sorry,  I cant lie,  Im stunned. Does anyone else have massive head pressure still? Its constant recently apart from a little break on Thursday. If anyone else says the word gratitude,  I swear I will flip. I have had gratitude all my life and I will have it again,  just not at the moment.

[[Lo...]]

Get yourself booked in for a full check up Marj. Get all the tests done and kill that anxiety. Hang tough buddie so sorry you are still in the trenches.

 

Ive improved a bit and thankyou for all the support when needed it everyone. That psychotic episode nearly sent me off the deep end and nearly completely lost my shit. Today still feeling a bit low but nothing like previously. I have cottonbrains / DR and headaches today but the DP is gone and feeling like me again.

 

Amazing the fatigue is minimal and my muscles feel strong just dealing with the head symptoms at the moment. Hopefully keep clawing my way out of this hole

[[...]]

Thanks Lockie, I'm stupidly terrified of doctors, never used to be.

 

I've heard that we don't absorb nutrients properly and tests are not accurate, yet some deficiencies if left untreated can be so damaging. Does anyone know if this is correct? I'm driving myself nuts, not knowing why I'm struggling so much. I swear I'd give a limb. work is so difficult feeling like this, feel I could face plant! Need a break, even a small one.

[[Mi...]]

Marj,

I agree! I know its rough but you need to make a Doctors apt... 

I have horrendous health anxieties throughout this also. And the only thing that helps me is to get checked out. Write down everything you are afraid of and get it all ruled out.

Dear it was the only thing that helped me. The only test I haven't done is the endoscopy because I refused and still refuse to be sedated right now. But that's my only test I still have to get done. Although the doc and I compromised last year on a throat scope and a barium swallow...

Now it's been a year and they want me to do the endoscopy... Not doing it yet!

But still hun write it all down find someone you truly trust to go with you and get everything you want done or need done, done...  You will feel so much better I promise!

And you can refuse anything you don't want done.

❤️️

[[...]]

Thanks Jen, I have a telephone appt on thursday. Hope fully I can deal with it that way. I get so anxious that they blame everything on anxiety and having to keep myself from being nuts. Once you have that anxiety label that's it as far as doctors go I find.

 

 

Has anyone heard from Texas Mama? I'm worried about her.