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12-24 months and up support group


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Like an old radio 📻 it’s trying to find the station so we can dance to the music 🎼

 

LOVE that analogy LadyD!  I too think of it as fine-tuning.  It's all so familiar (the symptoms) but somehow it is different too.  Can't put my finger on it.  Maybe the hope of healing just around the corner is making it feel different.  Unfortunately my mind is always searching for associations to what I ate or did.  But we know that is a wasted use of mental power.

Yep isn’t it strange? I can’t put my finger on it either. It’s different in a good way but so weird! I’m like in between feeling like my old self and feeling symptoms.  :-\::)

Yes my radio is tuning for real. I hear he station but it’s scratchy. Come on brain……get it right and stay that way!  :thumbsup:

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Hello to All You Beautiful People! LadyDen thank you so much for checking on me. It looks as though we're all in the same situation. Sounds like you're in waves. I am in the worst wave I've ever been in. With old symptoms coming back and today things have been cycling. I had a brief window very early in the morning actually before I'm ready to get up for the day, so it's there while I'm sleeping and then it goes away with very intense symptoms returning. It's even difficult to distract. Actually some of the symptoms have been pretty scary! That's why I haven't really posted I was waiting to see if things would lighten up and I could say something positive. But, on a positive note I think you're right we're all just trying to fine tune like a radio. My husband used the same analogy. Things are going in and out and old things have come back with a vengeance. Sure hoping we all see some relief soon.

 

Hugs to all! LiveLife

📻 radio is trying hard to get a clear station that’s for sure. Sorry you’re having the same. But it’s not surprising to me seeing we all are in this group. Older postings from years ago was the same as us. They went on to heal big time afterwards  :thumbsup: :thumbsup: :thumbsup: :thumbsup: :thumbsup:

Ohhhh I’m so ready for that! I know you are too. That’s ok if you don’t feel like posting on the rough days. I don’t either. We must do what we need to do at the moment. Just know I’m thinking of you and waiting to hear from you. Bigggg hugs and hang in there! These upticks are doing great things….your baseline will be better is the end result of others that went through this. All part of the process. But man it sucks!

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Hope you are all doing OK. Still about same here any progress glacially slow. Starting think the window was a one off. If anything I feel worse than I did before the window, hard to tell if it’s a wave or just back to default position feeling crap. Sorry I’m being misery again, but only getting about 4 hours sleep, which makes such difference to anxiety,  when you wake at 4.30 every morning too many hours to wallow in self pity😢
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Morning everyone!

That’s ok Leann we all are going back and forth too. But atleast we are not continually bad.  :thumbsup:

So we just press on. On the feel bad days we rest more. On the decent days we do things we enjoy but careful not to overdo it. With each day, complete healing is in the making regardless of how we’re feeling. For that I’m so glad. I hope you have a better day today. Sending you hugs 🤗

 

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Our weather is lovely here too. It is hot already here! Wow this summer will be burning up everybody. Lol

It will be so hot that we can cook breakfast on the sidewalks. Good to hear from you Leann.

 

Hope everyone is doing fine. Miss you all . Love prayers and hugs

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Sandy, how is your rosacea?  I seem to have just now developed some on my face, one side, and looking at threads about it saw you had it too. 
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Good morning everyone.  I'm not doing too bad symptom wise today, but I'm just feeling down.  This is feeling like it's just going to last forever.  I also read some triggering posts I shouldn't have. I need to start being more careful. 

 

It's a hot day where I'm at- we definitely skipped past spring and went right to summer.  Well, we did have spring but it was about 2 weeks long. 

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Hey Accidental glad you’re not feeling too bad. Yes it does seem spring was short. To me time is flying by! I guess that’s a good thing for us to get some months behind us fairly quickly.

I also second your feeling of this lasting so long that it feels like forever. We will be beyond happy to put this behind us for good. And when you’re this far out…one year two year etc it’s easy to think that way. BUT there’s far too many before us that healed to disprove the forever thoughts. We will heal in our own time. Believe it! Claim it! And don’t let those benzo lies take root. Those feelings are normal especially after feeling pretty decent then get slammed again.

Since I’ve been tapering and up until my now 23 months off I’ve been very careful not to read upsetting posts. I made a rule that I stick with positive threads. Because as you know….they can really do a number on you. What helps me is to keep in mind that someone else’s experience is NOT going to be mine. Even if there’s similarities. Every now and then I stumble upon an upsetting post…it is nearly impossible to avoid all of them. So as soon as I recognize that it could be too stimulating I abandon it. Because once you read it, you can’t undo it. I’m so sorry that happened to you. Please do the best you can to put it out of your mind. It is after all, someone else’s journey.  :thumbsup:

Hope you remain doing decently and have a lovely day.

This morning I’m in my dread and a wave…you know what I did? I went on YouTube and did a virtual tour of the Nagoya 4K walk through garden. Absolutely gorgeous and the best part was the person filming it didn’t talk at all. So I got to enjoy the sounds of the garden as well. Every step looked like the scenery was a wallpaper photograph. Stunning! This is what I do to distract myself when my waves are rough. I love visiting places on YouTube that I know I’d never see otherwise. I also watch different countries cooking their traditional foods. So….I engage in positive so my body will follow. If you like beautiful nature, gardens, zoos, museums, etc please go on YouTube. It sure does pass the time instead of focusing on my symptoms.

Sending you hugs and happy healing! 🤗❤️🌹

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LadyDen,

 

First I want to say congratulations on 23 months. Woohoo, you'll never have to relive those months again. I also want to say how much I love your positivity it's so encouraging. And I know you said you have dread and are in a wave and you're still being positive. So beautiful! I am in one of the worst waves ever. I'm barely making it through a day right now. But I am trying to think positive that this is nearing its end or a better Baseline that I've never had. Trying so hard to hang on. So many symptoms but one of the worst are the mentals, this intense chemical Terror that keeps me awake at night and stays with me during the day. I've had it throughout the last year but it has really intensified, recently.  And a couple of old symptoms  returned. But I have to say something positive and that is my smell and taste have been back for two months and the terrible wheezing cough I had that made it difficult to breathe and I had to use an inhaler has improved tremendously and my sinuses have as well. I keep repeating all that to myself to try and stay positive. I sure hope there's an end to all this Terror insight. Hugs!

 

LiveLife

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Live, hey there sweetie! I know it’s not easy getting your butt spanked. But rest assured that this is common this far out, I’m in the same boat as you! Wowwww it suckssssddd! But just like that radio analogy. We are fine tuning. So please hang in there. I’m with you!  :hug::mybuddy:

 

Distract to the max! That’s what I’m doing all day. Tell those symptoms to go to hell  :tickedoff:

 

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Sorry you are still struggling live. I’m still about same not much progress, but wave does seem be easing bit. Just read triggering post about people who CT’d , silly me. Just really thought things were changing when I got window. My sleep got really bad recently, you aren’t only one getting different symptoms. Glad some things at least have eased for  you😊
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Whelp seems I am starting a bit of a wave, I should have known, or realized that.

 

Ladyden, thanks for the positivity!

 

Leann, I think that was the same post I read. That person was really irresponsible to make those comments, but either way I'll be "cleaning up the mess" for a while bc of reading it.  I went to that thread to get comfort and got the opposite. 

 

Might just have to limit my BB time to this thread and pm.

 

 

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Yes I know I can be a bit of a misery  at times, and I’m sorry if I dragged people down ever. But I try not to make posts that can be triggering to other people. This support group is definitely one for positivity.
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Yes I know I can be a bit of a misery  at times, and I’m sorry if I dragged people down ever. But I try not to make posts that can be triggering to other people. This support group is definitely one for positivity.

 

Leann, no, I wasn't bothered by what you wrote, I had the same thought/concern.  I was bothered by the buddy that used the word "permanent" which in my opinion should never, ever be used here unless it's to voice that we are concerned we ourselves are damaged such and seek reassurance.  So no need to apologize but I appreciate your concern and sensitivity. 

 

This support group is great, so thanks again for everyone who makes this a refuge against some the scary stuff out there.

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LadyDen,

 

Thank you so much. And yes I agree we are fine tuning and have to hang on until the station comes in clearly.

 

Leann,

Thank you so much too. I'm sorry you stumbled onto a bad post, I know the feeling. And you definitely have to be careful what you read  I know I've been freaked out a few times myself and it's hard to unread something once you've done it. But we can't compare ourselves to anyone and I keep telling myself that all the time. It isn't easy.

 

Accidental,

 

That really is terrible when you're reading something and then discover it's going to make you feel much worse after. We just have to be so careful, our poor fragile brains are so sensitive and telling us benzo lies to begin with and when we read something scary it just sticks. We have to put a big stop sign up and block it out and cancel and dismiss it and that takes a lot of work.

 

Hugs to all!

 

LiveLife

 

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Hi Live, sorry you are still struggling. It was same post that accident mentioned that I read, when people bandy words like permanent around, is very irresponsible. I know we are all struggling but certain phrases can be very triggering. My sleep is awful at moment only getting couple hours, but enough of being Debby downer. After torrential rain yesterday sun is shining today😎
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LL, LD,

 

I read in old threads you had your gallbladders looked at.  I've been having upper right abdomen pain and odd stool so the GI doc recommended a Hida scan.  It's Wednesday.  Have either of you had one of those?

 

-AD

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Accidentaldependent,

 

I have not. I had an ultrasound done and my gallbladder looked fine. But before I had the ultrasound done I ended up doing a gallbladder cleanse. My naturopath did some testing and felt that my gallbladder was congested and that's the third time that's happened since I've been in recovery. It was causing me a lot of severe nausea and pain in that area. It sounds like a scan so it should be fine and hopefully they don't find anything. Wishing you the best. Hugs!

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Accidentaldependent,

 

I have not. I had an ultrasound done and my gallbladder looked fine. But before I had the ultrasound done I ended up doing a gallbladder cleanse. My naturopath did some testing and felt that my gallbladder was congested and that's the third time that's happened since I've been in recovery. It was causing me a lot of severe nausea and pain in that area. It sounds like a scan so it should be fine and hopefully they don't find anything. Wishing you the best. Hugs!

 

How do you do a cleanse? I did have a ultrasound, and that looked fine but I guess doesn't help with the function.

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Accidentaldependent,

 

I did the Hulda Clark gallbladder cleanse you can look it up online. My naturopath referred me to it. It only takes two days to do. And if you have any gallstones or anything it will flush it out. It just helps to clean it. It definitely helped afterwards things settle down for me. It didn't happen immediately but it did and then when my naturopath rechecked everything looked better. But I have had a problem with it being congested from time to time another thing that I took was beta plus by biotics. That can actually help decongest it without doing the cleanse. But then you're doing a supplement and I know a lot of people can be sensitive. I had no problem with it. So a couple of times when I had the congestion I just used the supplement. It's hard to know what to recommend because we're all so different and sensitive in different ways. Hugs!

 

LiveLife

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Yes I know I can be a bit of a misery  at times, and I’m sorry if I dragged people down ever. But I try not to make posts that can be triggering to other people. This support group is definitely one for positivity.

 

Leann, no, I wasn't bothered by what you wrote, I had the same thought/concern.  I was bothered by the buddy that used the word "permanent" which in my opinion should never, ever be used here unless it's to voice that we are concerned we ourselves are damaged such and seek reassurance.  So no need to apologize but I appreciate your concern and sensitivity. 

 

This support group is great, so thanks again for everyone who makes this a refuge against some the scary stuff out there.

You are very welcome and we’re happy to have you my dear. Yes please continue to be careful what you read on here. This is not to talk bad about anyone….but, we have to keep in mind that everyone on here is dealing with a brain injury of varying degrees. Because of that some people are operating, thinking and speaking with altered thought processes. Unfortunately those thoughts are in most cases not positive. Saying this is permanent without ANY evidence is not a good thing to do. However, there’s plenty of evidence/success stories that contradicts “ permanent “ talk. Regardless of whether someone believes it’s permanent or not, if they don’t reinstate or don’t start trying this or that to “ help”, they heal anyway. Then they have to come back to say “ I thought it was permanent. I was wrong!” That is a common admittance in success stories. So I’m glad that you are choosing to put that out of your mind. Something that’s permanently damaged doesn’t get better AT ALL. This is important to keep in mind. Belief in your healing can keep you grounded and combat extra stress. The extra stress can make symptoms worse and therefore can make you think it is permanent because it feels like it. I make it my business to not read anything triggering ( negative, extreme suffering, stimulating, etc). Nothing more than what we do here which is pretty much….” I’m having a bad day or my symptoms have upticked, etc. That’s normal reaching out for support. Which is why we all are here.  :thumbsup:

You WILL heal, Accidental . We all will heal….we are in the process as we speak. Believe that! Sending you love and hugs 🤗

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LL, LD,

 

I read in old threads you had your gallbladders looked at.  I've been having upper right abdomen pain and odd stool so the GI doc recommended a Hida scan.  It's Wednesday.  Have either of you had one of those?

 

-AD

Yes I had a Hida scan. Mine showed my gallbladder was barely functioning. I had surgery to remove it. Immediately felt better  :thumbsup: 

It did take some time for my digestive system to handle fats without a gallbladder but it’s not that hard to endure. Slowly over time, I increased my fat intake. It’s not a coincidence to me that many have gallbladder issues while on benzo and drugs. Before Ambien, I NEVER had stomach issues or balance issues. I had an ultrasound which showed nothing but my doctor knew something wasn’t right so she sent me for the Hida scan. She was right! It looked normal but wasn’t functioning very well.

The gallbladder removal was definitely needed in my case. Please keep me posted.

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Hi All!  Just popping in to say hello and keep in touch! Doing OK lately - not healed yet but feeling a tiny bit stronger as I ease into more activity and movement.  Have been gardening last 3 days.  Sore and achy but definitely a different kind of pain.  Feels "normal" as opposed to that "withdrawal" pain if you could understand what I mean....

 

My plan for the Summer is to double down on a good diet - even more vegetables and less processed chips, etc.  Staying gluten free as it helps me for sure.  Had my thyroid tested and I am a bit high on T4 - and I've been on this dose for 35 years!  So reducing my levothyroxine a tad.  I personally think being GF has resolved some inflammation and auto-antibodies and maybe my thyroid is functioning just a tiny bit better....we'll see.

 

Reading a wonderful memoir written by a medical doctor who fell chronically ill and took 10 years to heal herself.  No benzos involved but the healing journey incredibly similar to ours.  It brought tears to my eyes while reading for no apparent reason.  My subconscious must be sympathizing with her story and there is much grief deep down within me.  I think it's worth sharing here:

 

https://www.amazon.com/Brave-New-Medicine-Unconventional-Autoimmune/dp/1684032059/ref=sr_1_1?crid=1P7DIWMJZ5W94&keywords=cynthia+li+brave+new+medicine&qid=1653308111&sprefix=cynthia+li%2Caps%2C104&sr=8-1

 

The takeaway I think is that our kind of multi-year healing journey is individual and multi-layered.  So many avenues to address to achieve full healing, e.g, the gut, stress reduction, diet, exercise, experienced or inherited trauma, unresolved grief, etc.  There is a book to be written by each one of us.

 

My thoughts are with each of us as we continue on our journey!

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