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30+ month and still in the fight


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Hello Buddies,

 

Someone mentioned that it might be helpful to open a 30+ month thread for people still in the fight.

 

Hopefully, this thread will be filled with posts of unconditional support.  I am getting better at the same snail’s pace I always have.  Subtle improvements, barely perceptible, but nonetheless they are improvements.

 

Some of us may not be able to detect any improvements whatsoever.  That’s okay.  It could just be that improvements, when they happen, will be big ones.  We just don’t know, but we need to have faith in this process.  Everything leads to 100% healing eventually, no matter how long it takes.  If you don’t believe this, then this thread is not for you.

 

Welcome to everybody who wants to ride the rest of this roller coaster with me.

 

Sofa

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Thanks  Sofa....but I'm still thinking since I'm so much farther out that maybe I should be in a 40 + group I feel that is where many of the conflicts started is the temeline difference...again I'm sorry if I scared anyone for things I said....but I guess the timeframe does make a difference...

 

Hugs

TM

 

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TM,

 

This isn’t about timelines, hon.  There are no set timelines.  I can understand that you are wary that some of us are not as far out as you are, and that you can’t identify with us anymore.  You didn’t scare anyone with your posts.  If you think about it, you are a year ahead of me and I’m 6 months ahead of NCT.  This thread is about giving each other unconditional support.  No judgements.  No arguments.  Just hope.

 

Find the support on this forum wherever you can.  If it’s not on this thread, it will be elsewhere.

 

Sofa

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Hello all,

 

I think it is a very good idea to start this new thread as most people on the 18-30 months thread were actually out for longer and I dont think it is good for people who are 'only' off for 18 months to be in the same support thread as 30+. Maybe it would even be better if the old one got archived and a new 18-30 months thread was started. But that is not on me.

 

So here I am, almost 41 months off. I do have small improvements but still not functional and in bed most of the time.

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Hey NCT,

 

My dear dear friend. 

 

I know you are still having awful nerve and muscle pain, but it’s just the BIG BUGGER symptom you got stuck with.

 

I’ve read a lot about EVERYTHING since this started.  I’ve read how the density of our receptors are mapped out differently in each of us, which accounts for the 322 different symptoms people report and the severity and duration of a few.  I’ve read how all the receptors, not just gaba, talk to each other and need to upregulate too.  Like dopamine and seratonin.  Dopamine is the big pain receptor.  When those receptors upregulate, your pain will diminish and then leave.  You are just mapped out differently than I am—you with the pain, me with the heart racing, cortisol rushes and head pulsing. 

 

This will all leave, NCT, just like Una, Ian and Baylissa have always reassured you.  These counselors wouldn’t be spending their lives supporting people, giving them hope, telling them we all heal, if they thought for one minute this was permanent for some people.  I’m sure these counselors have better things to do with their time than give people false hope.

 

Love you, Sofa

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Welcome “home,” Vanille,

 

Let’s have this be the last depot stop for us.  We are almost there.  Some of us have seen huge improvements since this started, others have seen small gradual ones.  I’m mostly bedbound too.  I get up and do laundry and dishes.  I go grocery shopping.  I cook.  I go on walks.  I take Opie out for two walks a day, too.  I wouldn’t call his walks exercise, but at least I’m moving.  I go to my grandkids’ soccer, basketball and baseball games every weekend.  My daughter and grandkids have sleepovers here a couple times a month.  But for the majority of each “regular” day, I rest and distract in bed.  I keep my CNS calm as best I can.  I rinse and repeat the same routine most days.  So don’t feel bad.  We have one job to do and one only.  GET WELL.  We do whatever we have to do for one ultimate purpose:  TO HEAL FROM THIS SHIT AND MOVE ON.

 

We are nearing the end of the journey.

 

Sofa

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Hi Sofa,

 

Thanks for your words. Hope we all wont be on this thread for long and move on. But still come back every once in a while to BB to report to the unfortunate behind us. I like to think I will do that.

 

Your days sound like mine, except for the weekend games you go to.

 

I wonder how many people will move to this thread. We"ll see.

 

Vanille

 

 

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Vanille,

 

I have no idea if this thread will have a “shelf life.”  For me, it’s better than reading the protracted board.  Fewer people, fewer scary stories.  Hopefully, we will share a common bond of acceptance until it’s over. 

 

We are close to the end, I believe, and maybe none of us will need to be here, or on this forum, at all.

 

Sofa

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Hi Flicka, my old friend,

 

Welcome to this thread of friendship.  That’s what this is.  Giving each other support and strength during the last part of this journey.  You know, this last part is just as hard, but in a different way, as the earlier stages.  We are tired warriors.  We have battle scars.  But you know what?  Scars are stronger than regular tissue.  Our nerves will never be rattled again!

 

I know, Flicka, just how awful the anxiety is at every stage.  It’s the “thing” that makes us feel the most miserable, even if some of the other horrible shit has left.  We’ve all still got the anxiety.

 

The thing about our anxiety, however, is it is completely physiological.  Too much glutamate, not enough calming gaba.  This WILL rectify.  I can already see it with calmer days generally.  It’s not perfectly balanced by any means, but it’s a start.

 

Hang on, hon.  Grab onto little glimpses of feeling better until they become more and more frequent and last longer.  It happens.

 

Love, Sofa

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Hi mocksnell!

 

Pull up a recliner in here and relax.  Have a cup of tea and put up your feet in the big bad Lazy-Boy.  We are in this TOGETHER.  We will get through this TOGETHER.  We are stronger as a group than any one of us is individually.  I know these people coming on board this thread.  These are the best of the best and the kindest people I’ve ever known, unwavering in their compassion and support.

 

You are in great company.  I wouldn’t want to cross the finish line with anyone else.

 

Love you all,

 

Sofa

 

 

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Well, Buddies, today is a “meh” day, just feeling generally yucky and unwell.  Nothing dramatic to report.  Just one of those days designed to be flushed down the toilet.

 

My daughter and grandkids are coming over for dinner and a sleepover.  We will play all day tomorrow—watch movies, play pogo sticks (just the grandkids!), play army men (I’ve got leftover cardboard boxes to make barracks), play balloon ball, play Charades and Pictionary.  Damn if I’m going to let these friggin pills take my moments from me and my family anymore.  Screw it!

 

Sofa

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Sorry you had a `meh` day Sofa, this crap takes some beating but we will conquer it!

 

I`m glad you started this thread for us, already I can see that I`m not unusual in my recovery by spending time either in bed or on the couch. And that`s reassuring!

I manage the laundry, two short walks a day and once a week manage to see family!  Not my ideal life for sure but better than I was 2 years ago.

 

Keep holding on buddies, i still talk to Una most weeks and she`s adamant that we all heal.

 

Have fun with your family Sofa, don`t let this bugger spoil your day.

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Good morning ... it has been a while since I have posted on BB ...

 

First, it is my wish that this thread be useful and helpful to everyone who visits here ...

 

A little update ... I am some 51 months out as of next Sunday ... the best description I have for my journey so far is that I am pretty much functional most days, except when I am not ... "functional" for me means getting on with the tasks of the day, living a life I deem fruitful and blessed ... "not functional" are the times when I withdraw from the tasks of the day and "go quiet" and "slow" until whatever is engaging me from the depths of this healing process has run its course ... whether that is a few minutes or a day or a week, however long it takes ...

 

Be Well ...

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Nova Scotia,

 

So happy to hear from you, old friend.  You have always been so encouraging, so philosophical, so accepting of a “natural” healing process that “is what it is until it isn’t.” 

 

I enjoy the company of people like you and others on this thread who are not given to panic or try to fight this process.  We just do what we can with the time we’ve been given. 

 

Thank you for stopping by and giving us an update.  I have thought of you often and now I can lean back in my recliner and smile.  You are still walking beside us in spirit.  I get a sense of peace knowing you are around.

 

Love, Sofa

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Hi Buddies,

 

Well my daughter and kids are gone and it’s just me and Opie again.  I already miss them after just an hour.  The house is silent, not filled with noise and giggles and movies and LIFE.

 

It’s okay.  I tell Opie that we’ve got more healing to do.  I don’t ruminate with the “how much longer” thoughts anymore.  I don’t look further out than the present moment.  I do my best to just deal with what comes along.  If I’m tired, I lay down, pretty much accepting that I may have to get back up and pace because of the electric legs.  If I’m nauseous or have stomach cramps or diarrhea (like yesterday), I lay down or walk around and hope it goes away soon.  The crying days are over now.  This is a really good sign.  I just deal with the crap as it arises.  I’ve stopped trying to figure this out.  There are no answers.  Our bodies need to heal from drugs that disrupted their flow of information and smooth operation.  That’s all.  Recovery will happen eventually. 

 

In the meantime, the motherboard will keep misfiring and shorting out.  Weird shit will keep happening inside us.  We’ll just keep riding out the storm till it’s over.

 

Sofa

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Sofa, I'm glad you were able to enjoy having your family there.  An hour of that would be all I could handle so Im happy you didn't get overwhelmed with the noise and fun.  That's wonderful.  May you only continue to enjoy your life more and more.
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How`s everyone today?

 

I just woke at 4 am (again) and checked  my symptoms almost as soon as I was conscious (again)........do you all do this too?

 

So far my shoulder and lower back are beginning to spasm with a dollop of anxiety kicking in, but I think the anxiety may leave once I`ve told myself to shut the hell up and accept my muscles aren`t healed yet ......but they will!

 

I think my tinnitus may be settling but this bugger of a symptom tends to do this. I`ll have a quiet day then away it starts all over again .....feck it!  But it`s quiet right now and that`s progress!!

 

Hello to everyone I`ve not said hello to and hoping this thread sees us all getting better and better.

 

Onward dear buddies......

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NCT,

 

You and I have been friends for a long time now and you know how brutal my 4am cortisol alarm hits me every morning.  It’s been this way since I jumped CT 38 months ago.  Just this morning I paced at 4am in my backyard in the dark (like I do EVERY morning) and felt hopeless this will never end, but I asked myself, if this started 24 hours after I jumped, why wouldn’t it end someday?  The answer that came to me is IT WILL END.

 

These stubborn relentless symptoms are deeply-ingrained.  Maybe due to our genetic predispositions, we took a huge hit in a weaker area.  I have 24/7 tinnitus too, like you—mine is pulsatile tinnitus—and, like you, mine gets quieter then louder too.  The overall trend of my tinnitus, since about 2 years off, has been a huge improvement from the original “washing machine with sneakers in the drum” sensation.  It’s a quiet pulse now, even in the worst of times.

 

Let’s grab onto each tiny improvement and run with it, NCT. 

 

Love you, Sofa

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Hi Flicka dear friend,

 

Your jump date was March 2015—four months behind me.  Four months ago I was much less functional than I am today.  My fear and my mood swings were still in high gear.  I was dealing with the DREAD each day.  It’s the fight/flight area of the brain, the amygdala, that’s being set in motion by too much cortisol and not enough calming gaba.  It’s physiological.  When the cortisol keeps lowering, and it IS lowering each day right now, it gets to a point where it doesn’t bombard the amygdala so hard and the cycle of fight/flight response doesn’t get set in motion.  You just feel calmer overall.  Less anxious.  Less fearful.  This will happen to you very soon.

 

Sofa

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