12-18 month support

[[Sk...]]

I'm sorry to post something negative, being so new to the group, but I'm scared. I have fallen back into acute symptoms after 9.5 months out and I don't know how to cope with the panting, nausea, heart palps, stomach issues.

 

I just don't know how I fell back like this. I've been sicker today than I've ever been.  I'm already bedridden.  I just don't know how to relax and let this just pass.  You are all so strong.  This is grabbing me at my core.  Sorry for the sucky post.  Looking for some encouragement.

 

Hope you all are having a healing day.

 

Sofa, you are not falling back, you are in wd. THere is nothing linear, it's totally counterintuitive.

 

Try to find a very good distracting routine to cope when things get bad and try to live one moment at a time.

 

WHen things get bad, or scary, come here and vent, that's what this thread is for. 

 

 

[[...]]

Sofa,

 

Sky is so right (I’m glad you posted this Sky). The non linear process makes this even more incredibly hard and I think that’s one of the reasons we need constant reassurance. It makes it really difficult to see our own progress. Our progress is getting through each day. Even though this is the case, I say this with much trepidation. Last night I felt ok, very tired after hardly any sleep for a few nights. Felt certain I would sleep, alas not, or not much. This morning felt like I can’t do this anymore; all the negative thoughts flood our minds when we feel so bad AGAIN! The fatigue, pain UGH!! When it’s ok, we are scared to admit we feel ok and when it’s bad it’s hell (this is how I am anyway). The good news though is, when it’s gone it’s gone. This does happen, I have been told 100’s of times by people who support people like us and have been for many years. I write this for myself too as the backwards and forwards nature of this is torture. I’m having another one of those tantrum days and would gladly throw and smash things, however I’m so darn exhausted so the tears flow instead

 

Do what Sky says and come on here to vent. You will get loads of supporrt here 

[[No...]]

Sofa and Sky and Marj ... yes, yes, and yes ...

 

Some days I just don't know what to with myself ... and "doing" can often be my "undoing" ... so when I am in this state I remember and try to "do nothing" ... that may sound a bit crazy ...

 

This stuff seems to drive us nuts from time to time ... for me often most of the time ... my balance and sanity seem to be maintained by just living through it day to day ... look after myself ... and look after as much around me as I can ...

 

For my ... suspend all judgement ... about anything to do with my healing ... just live through it ... and be as connected with others who understand what I am living through as much as I can ...

 

There is a tremendous sadness within this process ... an emptiness that can seem engulfing ... and yes they are real I believe ... and they are temporary and often exaggerated when we feel utterly bereft ...

 

Often I can only slow down, engage my quietness, and let more time pass ...

 

And ... we will heal as long as we stay with the process ... no matter what ... 

 

 

[[Aq...]]

Nova.  Great words of wisdom.  Keep it up!  It's all you can do. 

[[so...]]

I cannot express my gratitude enough to all of you because my words fall so short of how appreciative I am of your kindness.  I am bawling my eyes out right now, mostly because I'm frightened at how rapidly my symptoms keep changing and worsening hour by hour, and also because of the generosity of this group.  Nova, Sky, Marj, Siggy, BJames, FJ, God bless you all!  Your advice and comfort is what I'm clinging to right now.  This is all so different than my first 9.5 months.  This frantic cycling of symptoms just started three days ago. I feel like a lone turd in a swirling sh*tstorm.  I'm holding on for dear life.

 

Love to all of you.  I know we will heal 100%. I pray it is true that nobody in this group gets left behind.  I will be here till the end, for sure. I'm a year or more behind many of you.  If you could just hold my hand a little while longer I would be so very grateful.

[[so...]]

Thank you, Aquaval.

[[No...]]

Sofa ... this rapid cycling of stuff ... it is dreadful ... yes ... and ... many of us went through a period of this type of cycling ...

 

And sometimes we find ourselves in a cycle of one day okay, one terrible ... back and forth ...

 

There is nothing to "figure out" ... and for some of us "over-thinking" this stuff just gets us more messed up for a while ...

 

Hang on, my friend ... we are here ... post what you need, when you need ... we are all on the same mad rollercoaster, just in different seats ... 

[[Si...]]

Yep the rapid cycling stuff really is pretty weird. I have no way of knowing this, but I really think it's a sign of healing. I just think underneath it all the brain is trying to figure ways to fix the problem, so it's just trying every puzzle piece until it finds ones that fit and then so on to the next piece. It seems pretty common in late first year into second year to have this. That's my guess anyway.

 

I got about 7-1/2 hours of sleep last night after not sleeping the night before. So feel relatively decent today. Some facial burning, but not to bad. Luckily (knock on wood) my head pressure is a minimum today. We'll see how it goes later!

[[so...]]

Siggy, I'm so happy for your sleep!  Wow!  7.5 hours is GREAT!  I haven't been able to string together more than 4 hours since the beginning of this WD odyssey. And I'm grateful for the 4.  You must be close to the end of the line.  High fives to you! (Or high 7.5s!)

[[so...]]

How is everyone else doing?  What symptoms are you left with his far out?  Have any symptoms gone away permanently?  How close do you feel you are to the finish line? 

 

Sorry for all the questions.  Like Nova says, I drive myself crazy trying to figure this all out.  (As if WD isn't driving me crazy enough.) 

[[Te...]]

Hi everyone.....always staying in close touch reading your post ...but honestly I feel so much worse off due to having so many symptoms...I feel I'm much worse to embarrassed to post much on here due to this....

I can honestly say you all have a great support system....you all seem like great friends...so I hope you guys don't mind when I jump in at times...

I'm concerned my symptoms are not getting any better...have more symptoms that are compounding the long term symptoms....it's really hard to manage the pain....

Are you all going to start another thread ...after 18 month?

Like a 18 to 24 month thread?

Hugs! TM

[[sa...]]

Hi Everyone. I haven't been here much as I have trouble seeing all the suffering. But I thought I'd stop by to share this. Here is a collection of success stories to go through when you feel like this is going to last forever and never get better. These have been helping me through some dark days lately. I thought I'd share.

 

https://benzowithdrawalhelp.com/wp-content/uploads/Benzo-success-stories-rev-2.pdf

[[No...]]

TM ... this group decided not to start another thread ... we are hanging out here ...

 

We never mind when folks drop in to let the thread know how they are doing ... that is why we are here ... we all need the support and reassurance of each other ...

 

Many of us have felt as you do now ... seems our only ally in this is Time ...

 

As long as we stick with the process we will all get better ... 

[[Gr...]]

Hi Everyone. I haven't been here much as I have trouble seeing all the suffering. But I thought I'd stop by to share this. Here is a collection of success stories to go through when you feel like this is going to last forever and never get better. These have been helping me through some dark days lately. I thought I'd share.

 

https://benzowithdrawalhelp.com/wp-content/uploads/Benzo-success-stories-rev-2.pdf

 

Sasq, thank you so much for this.  Really good.  esp. like No. 9.  just didn't recognize who it was.

[[Gr...]]

Hi Everyone.  I decided to straighten out my days and nights.  So I didn't sleep this morning, just stayed up.  Tough day.  Hope it works, hope I can get to a normal sleep schedule.

 

Feel better, everyone.

 

TM, On starting another thread, I think the consensus is to stay put. It was traumatic enough making this move from the 6-12, lol.

 

Also, looks like we both jumped in Nov 2013?  It's been a rough ride, you're not alone.

----

just checked, you jumped later!  don't worry, things can get very intense in the second year before the healing starts.  you will feel better.

 

have a better day, everyone.

[[Te...]]

Thanks for the  replies GreenIce and Nova....

I'm just sad that I'm  not really seeing much progress.....which upsets me.....gives me the negative thoughts that I'm the one that will never heal....but to be honest ....if I get many more symptoms I don't know how I'll be able to cope....some threads I've read just add to the negative thoughts....wow

Thankyou Sasquach for the success stories....it's nice to hear positive things..

So I'll just be knocking on your doors....glad to hear I can stay put on this thread .....and even though I don't post a lot I'm always comforted by you all.......and saying that....thanks....to everyone.....

Hugs! TM

[[No...]]

Good Morning ... this thread is getting quieter and quieter ... hmmm ...

 

I take that as a good sign ... hope folks are doing well ...

 

I seem to be locked into a doldrum cycle these last few weeks ... not feeling terrible usually ... mostly just lousy ... it is hard to keep with it each day ... I am getting better, it is just taking a while ...

 

Hope we all have a quiet Thursday ... 

[[Si...]]

I feel like total crap. I barely slept at all last night. That makes two sleepless nights this week. I was having an ok month sleep wise until now. I just don't get it. When does this crap ever end? My whole spine is on fire right now. Have to get up and go to work. I HATE this stupid drug.

[[No...]]

Hey Siggy ... poor or no sleep really plays on our perceptions ... this is tough stuff we do day in and day out ...

 

Hope this settles down for you and you can enjoy some of your day ... 

[[...]]

I feel like total crap. I barely slept at all last night. That makes two sleepless nights this week. I was having an ok month sleep wise until now. I just don't get it. When does this crap ever end? My whole spine is on fire right now. Have to get up and go to work. I HATE this stupid drug.

 

Sorry you are having this too Siggy. I can relate to where you are and it’s hard. I’ve not hardly slept this week although last night was a bit better. At work now, It’s lunch time here and usually things have slightly improved, however the fatigue right now is so bad I seriously feel like I am dying, can’t seem to get a full breath . I haven’t got head pressure but my brain feels like it’s being squeezed. I know this all sounds dramatic. I am going for my usual walk soon and cannot rule out a face plant. I need to try to breathe in some fresh air.  Try not to get wound up about not sleeping,  you just use up energy that you simply don’t have.  I know how hard it is to accept this, there is not much we can do, only look forward to lovely sleep again. I was a great sleeper before too……… it will come back. This sucks!!!

[[No...]]

Hi Marj ... yes, the fatigue we often feel during this process can drag us down ... hope you get the fresh air you need and that the brain squeeze goes away for you ...

 

The "can't get a full breath" thingie shows up from time to time and can be a scary phenomenon ... it passes just like all the rest of this stuff ... 

[[Si...]]

Thanks everyone. I'm here at work now. Pressing forward as usual.

 

Sorry you're having rough time of it Marj. Hopefully your walk will help some.

[[Sk...]]

Good Morning ... this thread is getting quieter and quieter ... hmmm ...

 

I take that as a good sign ... hope folks are doing well ...

 

I seem to be locked into a doldrum cycle these last few weeks ... not feeling terrible usually ... mostly just lousy ... it is hard to keep with it each day ... I am getting better, it is just taking a while ...

 

Hope we all have a quiet Thursday ... 

 

Nova, you are right, the thread is getting quieter and quieter. Must be a good thing.

 

How you are today ?

 

I have been having some very good days, I really do see some improvement.

 

I have been going to the beach, I was even able to swim again, but I am so weak. I have eaten some " forbidden foods " without feeling sick.

 

Tuesday, I went to a family reunion dinner and I managed to follow the conversation and have a good time.

 

There are many things that are still off, but I could not have done any of this 5 months ago, when I was last  here, so I am quite content. 

[[Co...]]

Good morning buddies..  just an update ( I have again lost my place in following all the posts of the last 2 days).  My first gi scan has indeed revealed a non-w/d issue...I have 2 umbelical hernias, one quite large and a suspected esophogeal hernia. A swallow study next week will r/o or confirm upper hernias and possible issues. Hernias are not serious and do not absolutely require surgery. ....and it is possible that benzo use and w/d had a role to play in weakening the structure walls that led to hernias. Pt. can be helpful, diet is helpful and exercise and posture are helpful. I am very relieved to know at this point that I have a common moderately bothersome pro lem and not any of the things that I imagined. It has been a 3 month wild goose chase full of health fears , doctors' appointments and tests.....I am happy with my decision to have it checked out as now I can let go of the specific health fears I had around this discomfort.

......I am happy to say that  my last wave seems to be not looping back. For the past week I have been fluctuating between 80% and 90% ....some effortless mind days and moments, better energy, a great decrease in mental sx, a better outlook on eventual 100%  healing. .....I am still having some moderate sleep issues, early wake-ups....some morning anxiety and intrusive thoughts that are brief and let up after I get up. I am cautiously anticipating returning to my grandsons' classrooms to volunteer ....that has been my goal for healing from the beginning. I very much feel that  my life is returning to normal in a ' stuttering' fashion, a few good day, a return of a variety of sx.  Then a good day, then a so so day, a random effortless mind day.. a random day back in acute. ....I feel that I still have a long way to go to re-enter life 'on the outside', I am not feeling the lasting trauma that I thought I would at this point. Some of the trauma memory of this has actually fallen away unless of course I am having a really difficult bout of anxiety and health fear. Just a few months ago I could not sit through a movie in a theater without horrible anxiety, d/r and wanting to get up and run. I now sit through movies with little or no anxiety, go out with my daughter, meet friends for coffee etc, run around on errands, attend family events , walk my dog, get my house puttering done ... and have days which feel happy and 100% clear and present. I am much more able to navigate the circular nature of healing. The tough days are still tough, but I am much more confident of good days following bad days . The doctors' visits, for me, have worked in my favor to reassure me that my health fears were w/d and any normal concern about the reflux etc. is greatly magnified by w/d.  ...I am....Finally ....absolutely knowing that complete healing is happening. I am finding myself thinking of and being limited for days by sx much ...much less. I am not there yet by a long shot, but I am so much more functional and engaged. I am about at month 22.5... A mere 6 weeks ago I was still feeling chin deep every day in sx.  I know that I could still get swept away with waves, but the thing that is so different is that my confidence in healing is so improved.

......For everyone still in the every day thick of it and suffering , just keep it going ( so easy to say. so hard to do), in the midst of sx you can not force your mind to believe anything that it doesnt, just survive each day as it comes. Just when you think it will never end, that this is your life, that your life is trashed... it begins to shift.  It becomes gradually real that healing will happen.... for all of us. ..

.....Wishing every single one of you sunbreaks and relief....we have come so far.  We are almost done..  ...coop

 

[[Sk...]]

Good morning buddies..  just an update ( I have again lost my place in following all the posts of the last 2 days).  My first gi scan has indeed revealed a non-w/d issue...I have 2 umbelical hernias, one quite large and a suspected esophogeal hernia. A swallow study next week will r/o or confirm upper hernias and possible issues. Hernias are not serious and do not absolutely require surgery. ....and it is possible that benzo use and w/d had a role to play in weakening the structure walls that led to hernias. Pt. can be helpful, diet is helpful and exercise and posture are helpful. I am very relieved to know at this point that I have a common moderately bothersome pro lem and not any of the things that I imagined. It has been a 3 month wild goose chase full of health fears , doctors' appointments and tests.....I am happy with my decision to have it checked out as now I can let go of the specific health fears I had around this discomfort.

......I am happy to say that  my last wave seems to be not looping back. For the past week I have been fluctuating between 80% and 90% ....some effortless mind days and moments, better energy, a great decrease in mental sx, a better outlook on eventual 100%  healing. .....I am still having some moderate sleep issues, early wake-ups....some morning anxiety and intrusive thoughts that are brief and let up after I get up. I am cautiously anticipating returning to my grandsons' classrooms to volunteer ....that has been my goal for healing from the beginning. I very much feel that  my life is returning to normal in a ' stuttering' fashion, a few good day, a return of a variety of sx.  Then a good day, then a so so day, a random effortless mind day.. a random day back in acute. ....I feel that I still have a long way to go to re-enter life 'on the outside', I am not feeling the lasting trauma that I thought I would at this point. Some of the trauma memory of this has actually fallen away unless of course I am having a really difficult bout of anxiety and health fear. Just a few months ago I could not sit through a movie in a theater without horrible anxiety, d/r and wanting to get up and run. I now sit through movies with little or no anxiety, go out with my daughter, meet friends for coffee etc, run around on errands, attend family events , walk my dog, get my house puttering done ... and have days which feel happy and 100% clear and present. I am much more able to navigate the circular nature of healing. The tough days are still tough, but I am much more confident of good days following bad days . The doctors' visits, for me, have worked in my favor to reassure me that my health fears were w/d and any normal concern about the reflux etc. is greatly magnified by w/d.  ...I am....Finally ....absolutely knowing that complete healing is happening. I am finding myself thinking of and being limited for days by sx much ...much less. I am not there yet by a long shot, but I am so much more functional and engaged. I am about at month 22.5... A mere 6 weeks ago I was still feeling chin deep every day in sx.  I know that I could still get swept away with waves, but the thing that is so different is that my confidence in healing is so improved.

......For everyone still in the every day thick of it and suffering , just keep it going ( so easy to say. so hard to do), in the midst of sx you can not force your mind to believe anything that it doesnt, just survive each day as it comes. Just when you think it will never end, that this is your life, that your life is trashed... it begins to shift.  It becomes gradually real that healing will happen.... for all of us. ..

.....Wishing every single one of you sunbreaks and relief....we have come so far.  We are almost done..  ...coop

 

Coop, how funny that we are glad to have hernias ! well, not glad, relieved ! 

 

So glad to hear you feel the shift, you so really deserve it. 

 

A big big hug. 

 

Enjoy.