12-24 months and up support group

[[Li...]]

GG,

I'm so sorry you're in a setback. I'm hoping it won't last long. I do agree with everything Deanna said it makes a lot of sense. Wishing you a speedy recovery from this setback.

 

JBen,

I'm so sorry to hear after you were starting to do better then you're flaring up again. Well at least you know what not to do now. We learn the hard way don't we. It seems to be the only way to learn with this whole process. We're all going to get through this and be stronger for it in the end. Hopefully sooner rather than later.

 

Fly,

It's definitely not unusual to have a wave this far out to last any length of time. I've read right before final healings or a better baseline that people can get a long wave. I've been in at least a 2-month wave and the last two weeks have been absolutely horrific. I'm 25 months out. So nothing is surprising in this whole process. Sure hope you get through this wave soon and are doing much better.

 

Hugs to all!

 

LiveLife

[[La...]]

Yes think maybe it’s a virus, and as you say bit of Covid fatigue as well, my stomach been a bit off. Was reading what Deanna said, I can’t really eat fruit as it caused frequent water infections in past was permanently on antibiotics. But go for walk and go on treadmill everyday, and Pilates once week. How you doing, I’m not too bad , but just seem be stuck on repeat play, can’t move forward with mental symptoms no matter what I try. Listening to a hypnotherapy CD, and doing the 6 minute diary every day, hoping it will flick a switch in my brain😱

Well I’m doing fine some days and some not so much. The past 3 have been rougher than usual. But seeing I just hit my 2 year mark I did expect this. Every time I hit another month I get a week of tougher days. What a hell of a way to celebrate every month, right? But, the good thing is that I’m not completely bedridden anymore. Now it is by choice when my waves get rough. When they settle I get up to walk, do chores, bathe, cook, something fun or watch tv. I try to stay out of bed as much as possible now that I can. After being in a bed prison for 2 years can anyone blame me? But I also am mindful that I still need to rest during the day. We must find our balance between rest and being active or we will get slammed. So I’m careful. The farther out we get then the more this is true. This is a crazy occurrence for us. We feel like crap for days or months even…then we get a window. In that window we are so elated for relief with renewed hope and start enjoying ourself. Because we feel almost normal again, we live it up! But if we are not careful, those waves reward us simply because we were being normal. And as you said, sometimes people get in the stuck phase to where they don’t seem to be improving. It can weigh your mind down to think that this is the best it will get. Pushes the stress up for sure. Stress makes it worse….vicious cycle. So, Leann don’t buy what your brain is selling    Keep staying busy doing your Pilates, going for walks, etc. Sometimes you might even have to take a step back to do a deep look at what you’re doing to ask yourself am I doing too much of this or that? Am I trying anything new around the time I got in this rut? Perhaps it might be written in your journal. But, often, there isn’t a reason or it can’t be pinpointed. I really hope you get out of your Groundhog Day soon so you can get a new better one. Keep pressing on, my dear. Hang on to your warrior strength.

❤️🌹

[[La...]]

OK so just now had the  chance to read through the last few day's worth of posts, so I may be almost caught up!

 

First of all:  LadyDen CONGRATULAYIONS on your new grandaughter!!!!    Having new life in our midst is such a glorius blessing and a reminder of all that is good and right in the world.  I hope you thoroughly enjoyed the visit, and KUDOS for being able to handle having a newborn in the house with you! You are certainly improving as well AND CONGRATS ALSO for hitting that 2 year mark!!  Was thinking about you and all our buddies lying in bed and realized you must have hit your milestone as you are 5 weeks ahead of me.  I remember signing on for the first time 2 years ago around this time and meeting you    I count you as a dear friend and wish you complete healing ASAP!!!!

 

GG:  Glad you don't have shingles but sorry about the uterine lining thickening.  That could be from the infection and you might have no issues going forward, I will be thinking about you as you go through biopsy.  You have been through SO MUCH and I wish for you to have all issues to settle down and find that blissful window again :-)  The garden misses you 

 

Leann - I see improvement in your posts! Do not be discouraged, the fatigue could just be one of those cycling odd symptoms that come and go during the latter stages of healing.  Fatigue is a very common symptom of BWD! Just rest when your body wants to, and you will bounce back soon!!!

 

JBen - so happy to hear you are doing better!  News like that keeps us alll going strong so thanks for sharing :-)

 

LL: I wish you some relief in your waves - they will indeed come and stay for longer and longer.  Have faith and keep up your brave journey.  We all know how hard it is sometimes.  But it will end.  And it will all be in the rear-view mirror for good.

 

Decatur - Same for you! I know the benzo bully is beating you up but you are in the right place here for support while you battle the beast!  Keep us updated and I hope you are feeling better 

 

If I missed anyone I am truly sorry.  My heart and thoughts are always with you all.  I have been having a strange emotion last week or so.  My daughter came to visit (bless her as we had the COVID) and I sometimes feel she loves my husband more than she loves me.  I sense/perceive that she laughs with him and shares a special bond, but with me she is all business and serious talk.  I think/feel that she thinks I am "odd" or something.  Presumably because I know I am a different person than I used to be.  I'm all c razy about my healthy diet, etc, and that conflicts with "fun" ....I suppose I am indeed not fun anymore, but I just am coming through this BWD nightmare....I don't feel like being jovial.  I may have PTSD of a sort...IDK.  Can anyone relate to this?

 

Smooches to ALL....

Smooches to you too dear friend. Yes I often think of you too every time I turn another month. I think wow Deanna is right behind me. I recall when we first met. You were the sweetest lady and we connected immediately. You still are such a sweetheart! The fact that the same medication did us in was another reason we bonded so quickly. I’m still in disbelief that a sleeping pill did this to us! Thank you for the congrats. You’re so right that new life is a very happy event to be a type and shadow of the new lives we will have.

Congrats to you as well with your upcoming milestone!!! I’m so excited for you! 🥇💃🏻

I’m so sorry that your feeling one sided love from your daughter. Unfortunately I’ve experienced the same. It’s not that they don’t love us. I believe that it’s because we’ve been sick for so long that they’ve accepted that we won’t ever be “ fun” again. We become the fun police in their eyes because we’re so sensitive to so many things that are normal. Unfortunately after so long a time, it causes our family and friends to withdraw from us. Not intentionally. My daughter and sons have done the same to me. Others come around they are laughing, tang,spending time, enjoying their company, etc. when they’re around me it’s like a damn funeral. Dry responses, barely hold a conversation, not informing me of things, barely crack a smile, give me less than 5 minutes of just talking to me, no calls or text on a regular basis ( unless they get in a bind needing something), don’t act like they’re happy to see me, no tokens love etc etc etc. As soon as they’re around their dad or others, it’s total opposite response. Every time I hear the excitement in their voice when talking to someone else, it immediately hurts my feelings. Especially after they just came in the door not 5 minutes ago and gave me a dry barely audible hello with no hug kiss on the cheek ….nothing! The ONLY person that doesn’t treat me like that is my brother. Thank God for him! So yeah, Deanna, I can relate. I’m not sure how receptive your daughter is but you can have a non- confrontational talk with her about it. At least she will know how you feel. Holding it in will only cause it to get worse. As for me, I tried that with my kids and it didn’t make any difference. I waited a few months to see if they improved as they said they would and nope they didn’t. So I had to let it go! It’s not about me….it’s them! I had to realize that I’m not the blame for their lack of showing me love. They were not taught by me to treat anyone that way especially a close loved one who’s sick. It’s a choice they made. This recovery takes so much from us. Unfortunately our families are not spared. You know, I came to realize that not everyone can handle watching us become a shell of who they know us to be. It’s not an excuse for them but it is a reason they might not know how to express. If we think about it, we barely can handle it ourselves let alone trying to make sense of it. All we can do is have a conversation with them and hope they care enough about maintaining the special bond. Again, I’m so sorry. I know exactly how you feel. Many times I wanted to drag myself out of bed and yell at them all ignoring me….” Damn it! You’re my family too! I’m not dead!”

🌹❤️❤️🌹❤️

[[Ga...]]

LadyDen and Deanna, you are both the strongest, sweetest and supercalifragilisticexpialidocious ladies I have never met!  When I read your posts I feel lifted and inspired and supported.  Thank you for just being two wonderful You’s!

 

I woke up feeling a little better this morning with less GI issues , and am actually looking forward to getting outside in the garden.  Not going to work in the garden, but just enjoy its sights and sounds!

 

I hope my fellow buddy friends will find a joy pleasing way to spend their day!!!

 

Sending hugs to all🥰🥰🥰🥰🥰

 

GG

[[La...]]

Morning hugs Yearlings! Firstly, welcome Fly to our thread.  Glad to have you! To answer your question….yes in this recovery it’s an unpredictable world of waves, pains and symptoms popping in and out. Sometimes for a brief time sometimes for months. Fun, right? 😂 It’s a real crap show with a roller coaster ride. But, it’s common. Part of the process so all we can do is go with the flow until we completely heal. For pains you can probably handle Tylenol. I wouldn’t dare suggest anything stronger because it could backfire on you…..I think JBen just posted he tried something with a not so good result. Our CNS is just way too sensitive to go around trying this or that. So, I strongly advise you to be careful. Do research before you take anything. And it will eventually pass on its own in its time. Sorry you’re having a rough time. But, we are all here to support each other. Hope you wake up pain free soon.

 

Live, thank you. I’m sad to hear you’re in distress still. You definitely are a soldier in this. I’m sure it feels like forever but it will end soon. All waves end! Keep hanging in there. Have your coping plan by the hour. It will help you get through the day smoother. Don’t forget to pamper yourself. Give yourself a treat. You deserve a little bit of TLC to help smooth over some of these hills. Know you are a strong lady! Keep your sword ⚔️ out fighting off the negative thoughts. Benzo Bully is kicking everyone’ s butt right now. Mine too! Let’s say we gang up on him  

 

GG I’m sorry you even have to have a biopsy in the first place. I do think something other than BW is causing your uterine thickening. BUT I’m not going to get too hasty to say it’s the worse case scenario. It could be a number of things or even a combo of things. Something as simple as aging. The nausea could be BW has circled back around. You know how these symptoms will do that so quick! Or it could be after effects of antibiotics. Sometimes when taking antibiotics they can take up to 2 weeks to show side effects. The pharmacy leaflets that comes with antibiotics says it. I’ve also experienced delayed effects from antibiotics 2 weeks later. One of them was nausea ( almost like morning sickness).  Except I knew I wasn’t pregnant because I had a hysterectomy.  Hope it passes soon. Sending you love and prayers.

 

JBen I’m sad to hear this news about you. What in the hell is going on? Seems like all of us getting hit at the same time! Wow, wow wow! Well, the good news is that it will be temporary. I know it sucks! But if you’ve felt better before then you will again….we all will. So, let’s all just hang in there holding each other up. You know, my friend, they say the blind can’t lead the blind? Well, in this we definitely can support each other even in despair ourselves. Feel better soon strong warrior! ⚔️❤️⚔️⚔️❤️⚔️ Keep fighting.

 

As for me, I’m getting my fair share of this crap show too. The past 3 days……Good lord in heaven!  :tickedoff: :tickedoff: :tickedoff: :tickedoff:

Nice way to celebrate my 2 year anniversary right???

Oh well onward I go….this too shall pass. I believe it so I will see it!

Love to you all ❤️❤️

Cuss scream cry throw something or whatever! Just get through today. That’s all we have to do. One day at a time.

[[...]]

In trying to cope I have decided there is a grand universal purpose to all of this suffering.  I think maybe it is a purpose of learning.  I dont really know but I am going with it.  I am learning a lot from this experience.  I am learning what it truly means to be depressed, to have anxiety, to have CNS damage, to have all sorts of things going on with you that doctors cant fix.  It is helping me to understand all of those folks that I have met that are suffering a lifetime of illness, mental or otherwise.  I am learning resilience.  I am learning to love, to empathize, to support my fellow humans.  I am learning that I am strong and powerful and can get through anything if I can get through this.  I am learning what is really important in life.  Is all of this worth it in the end.  I sure hope so.  To have purpose in this suffering makes it somehow better for me.

 

Last night I slept a little better but them moment I was awake my CNS went into shock again.  Crying, hugs from my sig other, cleaning the house and distraction have helped me pass the last few hours.  I sure hope this setback is a short one. 

 

GG, LadyD, Deanna, Live, Fly, Leann I am sending you big, big hugs.  I wish you speedy healing.

 

 

[[Ga...]]

JBen, you write so poetically and deeply from the heart!  I admire you and your strength through the worst of times, and pray everyday that your healing will come!

 

Hugs,

 

GG

[[La...]]

GG you’re very welcome, my dear friend. You will get through this. We love you!

 

JBen I feel the same way. This has tested every fiber of my being. It is the most humbling thing I’ve ever experienced in my life! I’m learning so much about myself, others and the real definition of things I thought I understood. You are so right! There’s no way we can go through this without it giving us something back that will last us the rest of our lives. It makes us see how easily we take for granted normal everyday things as well as overlooking the suffering of others. If I hadn’t gone through this myself, I wouldn’t have any way of knowing this can happen. A very valuable lesson is the fact that there is no help….it’s my brain ( CNS) that is in a battle to return back to home base. I’ve learned that my job is to “ help” it by staying out of the way with what I think can fix it. It’s a hard thing to do because in any other injury of the body, we can put on a cream, ointment, bandage, surgery, cast etc. But in this….nothing! We sit. We wait. We hope. We pray. We believe that it will heal. We watch it happen ever so slowly wishing it hurry up. It has robbed us of so much in the end but I’m comforted knowing that it will end. I’ll rise from the ashes of this raging fire. Shiny. New. Whole. THAT belief is what keeps me going. I’m on my way. I have to be!

Thanks for posting this reminder. Love and hugs.

[[Ga...]]

Beautifully expressed, LD🥰🙏😍

[[Th...]]

Lady Den, I agree with Gardenguru.

If I get through this I will be able to use it in better understanding my world. I have learned what it means to be humbled. That we don't have the control, and a better idea of what others are going through. Even little things, like why my partner is hungry all the time makes sense. Before it looked like they lacked control. When in reality it was their appetite level has always been in overdrive and it is hard to fight. It's like a blinders has been taken off my eyes and I see details I couldn't before. How did I not take a closer look?

[[La...]]

Hello Stitch 

Yes you said a mouthful! It’s because we didn’t have anything to cause us to look beyond our thoughts. Now, we can approach everything in a different way because we can appreciate our own experience giving us a real understanding of it all. There’s no way I could have ever even started to think of how or why things are the way they are prior to going through this. We unknowingly unfairly judged people…even ourselves without taking a deeper look. As you said. You are so right! Nothing is ever the same in our worlds after this. The blinders are off. Wow it is amazing how ignorant I’ve realized I was about such simple things I was sure I understood. Ha! Not to mention things I’ve never gave even a thought to….liklooking down to put on my sock! Wowweeeeeeeeee! After getting that taken fo me and now having it back. It’s not small anymore.

[[fl...]]

Thanks to the people who replied.  Seems like major waves and setbacks can still be an issue many months and even years after quitting benzos.  What a horrible experience. 

 

Hope we all get relief from this pain.

[[La...]]

Good morning everyone! I surely hope all had good sleep last night. If not then perhaps tonight will be better. May you all have a great day. Remember to self love. Be your own advocate. When you achieve things you haven’t been able to do in awhile please take a little time to congratulate yourself. Those little things are not little at all. They are much needed reminders that we are healing. That we will get our new lives.

 

Fly, I dare say horrible is not a good enough word to describe this. And yes most take 2 years or somewhere between 2-4. It was said back in the day that it’s about 18 months on average. I’m not so sure about that! It needs an update. Most buddies on here are just now feeling some normalcy by then. But boy do I wish it was 18 months! Wouldn’t that be lovely! So, since it’s not the case I just keep my focus on one day at a time until I completely heal. Setting a personal timeframe will only bring us major disappointment and false notions that we won’t ever heal. So, I make it a point to not do that. It’s best to be at peace with the personal way we heal than be at war with rushing it. Funny thing is, we can’t rush it or make it better anyway. Only time….it’s damn slow and annoying and frustrating but it is what it is. I hope today you have a nice window to enjoy something that puts a smile on your face. Sending you big hug.

🤗

 

“ We are in a marathon, how you get to the finish line doesn’t matter. Just get there!”

❤️❤️❤️❤️ 

[[Ga...]]

Thanks LadyDen for a positive and inspiring message to start the middle of the week off!  The weather here is beautiful, but temperatures will slowly creep up to the low 90’s, so windows will close and AC will be put ON?

 

I felt quite well yesterday and expected to feel the same this a.m., but it is not to be.  I am still having the GI issues, with a measure of “ick” thrown in!  I wonder if the ginger anti-nausea “candies” I sucked on last night before bed upset the gut.  There is 10 grams of sugar per four pieces, which is what I had?  Probably really reaching here, as everything ups my anxiety meter as I wait to see the OBGYN next Tuesday.  Anyway, I have already been outside to water the perennial bed, but really did not feel the joy that I normally feel when doing anything to nurture nature.

 

I sure hope and pray that everyone has a better start….for me a bad morning sometimes turns into a good afternoon and evening.  Oh, how strange all this is and what strong people we are to go through this nightmare!

 

Love and hugs,

 

GG

[[de...]]

Thanks for your encouragement this morning, Lady Den.  You always say just the right thing.  I really appreciate your thoughts!

 

Struggling today and thinking about everyone......Lady Den, JBen, LiveLife, Sjs, GardenGuru, Deanna, Stitch, Leeann, Fly, Bess....  I know I am leaving someone out, so just know I am praying for everyone that is struggling with BWD today. 

 

Some days we think we are almost there and then others we begin to think we will never be there.  Of course, we will all heal, but it just takes so doggone long.  I agree with you, Lady Den, that for a lot of people the healing is between 2-4 years.    I know that is proving to be true in my case.  The therapist I talk to occasionally, that has experience BWD himself, said three years is what it usually takes to be completely symptom free.  I am not sure where that 18 months number came from originally; maybe Heather Ashton.  It does look like anecdotal evidence points to a somewhat different timeline than 18 months.

 

Lots of love to everyone!!! 

[[Li...]]

Hello to all my buddies,

 

I am past the 25-month mark and still struggling so very much. Haven't had too many windows. Last night I had a little porthole where I had a break from the intense fear and it was glorious. But in the middle of the night it all came back. I've read many success stories where people are healed before the 3-year mark. I don't put a time frame on anything but I sure like to hope that most of these symptoms are gone before 3 years is up. It's just so hard to hang on if I think I have to go almost a whole another year like this. I can't even watch TV to distract, it's too stimulating for my nervous system. But I know you have improved so much Lisa as well as LadyDen, JBen, Deanna and Garden Guru. I'm just hoping for some breaks in all these horrific symptoms that have slammed me worse than ever in the last two weeks. Thank you for the positive posts and encouragement. Trying very hard to stay as positive as I can. Hoping for another break today. Hugs to all my fellow buddies.

 

LiveLife

[[le...]]

Thanks for your encouragement this morning, Lady Den.  You always say just the right thing.  I really appreciate your thoughts!

 

Struggling today and thinking about everyone......Lady Den, JBen, LiveLife, Sjs, GardenGuru, Deanna, Stitch, Leeann, Fly, Bess....  I know I am leaving someone out, so just know I am praying for everyone that is struggling with BWD today. 

 

Some days we think we are almost there and then others we begin to think we will never be there.  Of course, we will all heal, but it just takes so doggone long.  I agree with you, Lady Den, that for a lot of people the healing is between 2-4 years.    I know that is proving to be true in my case.  The therapist I talk to occasionally, that has experience BWD himself, said three years is what it usually takes to be completely symptom free.  I am not sure where that 18 months number came from originally; maybe Heather Ashton.  It does look like anecdotal evidence points to a somewhat different timeline than 18 months.

 

Lots of love to everyone!!!

 

 

 

 

 

 

 

 

 

 

 

I’ve been feeling the same. Had a couple of days when felt a bit more hopeful actually thought about booking a holiday next year. But today feel really crap again. I think 2-4 years is pretty average. I’m 41 months off zopiclone, but only 2 years off AD’s. The first 9 months weren’t too bad , so just over 2 and half years felt really crap.  Think it’s best not to put a timeline on things, as everyone different, it takes as long as it takes. I was convinced at 3 year mark would start improving, after comparing others experiences. Think any outside stresses can affect things, certainly did with my awful family last year, plus like me if you took other meds in withdrawal. Some people do suddenly wake up and feel lot better overnight, some notice some improvement then rapidly get better, others more slow burn.

Live you will get through this, best just not to focus too much how long other people take, as everyone different🙂

[[Ga...]]

Good for you, Leann!  You may not notice it, but your posts of late sound much more positive and hopeful.  Plus, your support of other bb’s lately is something to be proud of as you are reaching out in a good way.  One for all and all for one!

 

Hugs,

 

GG

[[Li...]]

Leann,

It definitely sounds like you're improving. And thank you so much for the encouragement. I greatly appreciate it! Hugs

 

LiveLife

[[le...]]

You’ll get there. Been crappy today so still got way to go. Even if it takes you 3 years sure you won’t feel like this for 3 years, it will get better. Think I’m only taking while because what my crappy family did last year. I ‘ve just done a free mini on line course to help anxiety, done by therapist in my town , has helped bit. Tomorrow maybe the day you turn a corner🥰

[[Li...]]

Leann,

 

Thank you so much for your kind words. Have you always been able to watch tv? Did your anxiety or intrusive thoughts ever keep you up at night and make it difficult to sleep? And if so when did that improve if it did? Sending you warm love and healing hugs. Hoping the rest of your days are much much better soon.

 

LiveLife

[[Ga...]]

Hi Deanna.  Just wanted to touch base with you today…how are you feeling?  I pray better than I am.  I am feeling really awful today with bad GI issues, chills, mild headache.  Also have been having some strange tingling throughout my body, especially in the private area. 

 

Do you think the antibiotics have upset my entire CNS?  Even if I have uterine cancer it wouldn’t manifest this way, do you think?

 

Feeling pretty down when I look back and read my post on May 5th that I was almost ready to write a success story.  Any thoughts would be appreciated!

 

Hugs,

 

GG

[[de...]]

Leeann:

 

It makes me happy to read your posts these days because you seem better.  I know you are not where you want to be, but I feel like things are a bit better.  We all need to remind each other that things do get better - it is just an incredibly slow process!

 

LifeLive:  Thinking about you a lot!!!!    I love how you continue to stay positive even in the midst of this horrific suffering!  We will all get there!  Yes, three years does sound like a long time.    One day at a time!!!

[[Li...]]

GG,

 

I do think antibiotics can upset your CNS. And I also think that tingling in any area can be from BWD. Right now I have very severe tingling in the whole left side of my body from my shoulder all the way down to my toes. I used to get that last year but it was gone for about a year and came back a couple months ago. I don't think that would have anything to do with cancer. I know it's not easy to just wait to have your test done and not stress. But do the best you can. I do believe those antibiotics put you in a setback. But you're going to pull out of this like you always have and will be better in the end. I'm sure of that!

 

Lisa,

Thank you so much for the words of encouragement. And you're right we can only take one day at a time and at times 1 hour or 1 minute at a time to get through this experience.

 

Hugs!

 

LiveLife

[[le...]]

Leann,

 

Thank you so much for your kind words. Did your anxiety or intrusive thoughts ever keep you up at night and make it difficult to sleep? And if so when did that improve if it did? Sending you warm love and healing hugs. Hoping the rest of your days are much much better soon.

 

LiveLife

 

 

 

 

 

 

 

 

No OK at night, mine just focus on thinking may have hurt people when I’m out. Sounds crazy doesn’t it. Basically need to protect people. They have varied in intensity, was getting bit better, but been worse again recently for some reason. If you can distract that has helped, anything that occupies your brain. I’ve tried various hobbies. When had trouble sleeping used listen to calming CD to help sleep, I always read for half an hour in bed. Try deep breathing exercises before you go to bed?