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18-30 MONTHS AND UPWARDS


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Wildflower very sorry hope you see some improvement soon.  I guess I'm a little lucky for the windows I had.  I'm probably the cause of my wave thought I was recovered.  Thought I could have a some beers and I think it restarted my symptoms.
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Happy Healthy New Year everyone .

 

Yes it does get better . I'm just over three years out in recovery from a whole mess of poly drugs including the dreaded klonopin . remeron and cipro and I'm 90% healed . It's not been easy, and when they happen the remaining  bugger symptoms of night time  leg and lower arm cramps and nerve pains can drive me crazy , but at this point my world is mostly a pretty happy one.

 

So push on buddies . It's a long hard road but so worth it.  :smitten:

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Just, nothing causes sx, windows or waves.  It is your brain healing.  Stay with it.  I m looking at it like the windows are when your brain is firing all cylinders, then the waves are healing!  Just remember you are healing and will be back to good soon.

 

B

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Happy Healthy New Year everyone .

 

Yes it does get better . I'm just over three years out in recovery from a whole mess of poly drugs including the dreaded klonopin . remeron and cipro and I'm 90% healed . It's not been easy, and when they happen the remaining  bugger symptoms of night time  leg and lower arm cramps and nerve pains can drive me crazy , but at this point my world is mostly a pretty happy one.

 

So push on buddies . It's a long hard road but so worth it.  :smitten:

 

Happy New Year (late I apologize) everyone also

 

Just wanted to reiterate what Brave Rabbit said. I'm at roughly 2.5 years and life has definitely reached a point of 'normalcy' (that doesnt sound like much but compared to where i was, i mean i get worked up thinking about it still). I sleep, I eat, I walk, I work, I enjoy my days! I have good times, I get tired normally, i wake with a normal amount of energy every morning and it runs out at a similiar rate each day, its like my body is beginning to remember itself. Life is like normal most of the time. I am not yet fully healed because i cant push my limits like i used (I had an intense career and exercised a lot when not working) - if i overdo it, my system goes a little haywire for a day or so. But i think back to where I was in hell for 2 years and I feel like im in heaven. Cant wait for you all to experience the breathe of fresh air on the other side too, which is just a little bit further. Hang in there all!.

 

I will continue to come back and post as things keep improving. Never lose hope. Focus on the gains and keep moving upwards!

 

Wishing you all well in the new year. Stay strong!  :) :) :)

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Pinky, again, all my heartfelt thanks. I can't write more, as I'm so bad right now. All the blessings in the world to you in 2020.
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My very best healing wishes for 2020 to all Warriors  :smitten: :smitten: :smitten:

 

Thank you BR and Pinky for shedding light and hope... those of us who are still well and truly in the trenches need all the light and hope we can get, that is how we keep putting one foot in front of the other day after day.

 

Buddies, another year is upon us, and with it, another 365 days of healing. Just imagine where that can take us, just another year from now... healing works in mysterious ways, but what matters is that it WORKS albeit in mysterious ways. Have faith in the process. Let's come to terms with whatever cards have been dealt to us. Yeah we are protracted and can't do much about that. But we can survive! We already have done so for a serious amount of time, and the worst is behind us now. We are now stronger than this, we have grown stronger because of what it's taken to face this battle since day 1. We are going to be ok. We are on the road to recovery. Yeah it is taking us longer than others, but what matters is that we are moving forward with every day that passes.

 

Here's to 2020 and its 365 days of healing!

Warm hugs  :smitten:

Julz

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  • 3 weeks later...
How are people doing in this group? Today I'm dealing with an inability to think clearly. I get physical sensations in the side of my head that make it hard to think clearly and not panic about simple tasks or interacting with people. For instance, I think about having time off this weekend and panic because I won't know what to do with the time off. Yet, I still feel similarly horrible at work all day. Just feel like I need to be out pacing at all times. I seriously wonder when I'm going to ever feel normal again. 22 months off now.
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I’ve had some lightening of mood and flashes of general optimism in the last month, but I’m currently in the thick of it with constant fatigue, dumb brain, and nightmare laden sleep.
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Boom box you are doing fine . At this stage in your recovery you are exactly where you need to be . It's not easy ever to accept that the recovery journey can be long and incredibly hard but it is what is is . Unfair as it is we are stuck with it and as Lily Tomlin used to say ' That's the truth ' . Keep the good thoughts going . One day you will be done . All the symptoms will be gone and you will be enjoying the wonderful life that you deserve. Until then accept , distract and keep moving forward .

 

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I’ve had some lightening of mood and flashes of general optimism in the last month, but I’m currently in the thick of it with constant fatigue, dumb brain, and nightmare laden sleep.

 

That's good you are getting flashes of goodness. Today I can relate to the dumb brain feeling. It feels like I'm hungover after a night of heavy drinking today. I took one of those .3 milligram herbatonin tabs last night.

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Boom box you are doing fine . At this stage in your recovery you are exactly where you need to be . It's not easy ever to accept that the recovery journey can be long and incredibly hard but it is what is is . Unfair as it is we are stuck with it and as Lily Tomlin used to say ' That's the truth ' . Keep the good thoughts going . One day you will be done . All the symptoms will be gone and you will be enjoying the wonderful life that you deserve. Until then accept , distract and keep moving forward .

 

Thank you for the support Brave Rabbit. Like I said in the previous comment, I feel almost like I'm hungover today. Of course I did not drink or anything, just feel dumb and can't think clearly. Took a small herbatonin dose last night. I hope my cognitive functioning returns.

 

How are you doing?

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Thanks for asking boom . I am living proof that life can go on and actually get better .

In the last six months I have supported my husband through a serious illness and become his caregiver , sold a home and moved 400 miles out of state , just closed on another home in our new wonderful Portland . This home is a total fixer upper and we will be building a brand new cottage in the back garden for visiting family . I have pretty much maintained my 90 % cured throughout all of this . I look back to the acute days when lying in bed and changing the remote on the telly was a challenge and honestly have to laugh out loud in pure joy  :clap: . So listen up all you non - believers things can and will get better.  :thumbsup:

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  • 4 weeks later...

 

Hi A1965,

 

So sorry to hear you're still struggling.  You may want to read some of my posts so I don't repeat myself here.  I was on Klonopin for 30 years and it's now been almost 5 years since I cold turkeyed.  Keep in mind I was gravely ill and bedridden from Klonopin BEFORE I quit.  I didn't see much improvement until my 3rd year.  My first 2 1/2 years were horror shows.  I came back specifically to let Buddies know that all my horrific symptoms just very slowly faded away.  It did take more TIME than I ever expected, but if my very sick body could recover, then I know the rest of the Buddies here will too.  Don't think that this is forever, because it's not.  It all goes away, but it just takes time.  It's very frustrating because society is so use to taking a pill for this and a pill for that, but honestly there are no pills to help what we have.  We are at the mercy of TIME.  I stopped all medications and am nearly completely recovered.  Just needs time.  Hang in there.

 

Thank you so much, At over 25 months off now, I was losing  hope and often find myself coming to BB to find whatever answer to this. I can totally relate to the term ‘Horror show’. I’m still in it, but I will fight through dreaming of the day that I don’t even have to think about the symtoms..

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  • 2 weeks later...

Hi All

 

Just wanted to come back and post an update. It would be really great if others could too as I often wonder whats going on with you all as we get further and further out. Im just about to reach 3 years and cant believe it. Dont be alarmed friends, I bring good news.

 

Ill get the small bad news out of way first, need to be honest:

 

Bad News - Still not 100%. Remaining symptoms: still dealing with sleep awakenings at night if stressed at all or working - i go right back to sleep though, reminds me of normal sleep issues pre all this. Still bad days sprinkled in but they are very rare - maybe once every few weeks now and can last 1-3 days. On bad days - symptoms are feeling dumbed down, tired in morning or afternoon or some electric type stomach pains which lasts only a few seconds a day. (i think we get intermittent gastroparesis - a thing where our stomach nerves sort of stop or slow down as nerves in stomach heal), burp alot and might fart a lot. My breathing feels off rhythm some days, i think this is just normal anxiety from tight diaphragm - if i meditate or sing (two amazing things that actually work, please try it! even if cant do either like i couldn't) to loosen the diaphragm, it sometimes resets and im fine!. Oh and some persistent nightmares for a week or so.

 

So that leaves the Good News! Everything else is gone or at least gone 99.99% of the time which means i cant even remember the last time it happened. Hallelujah. That means the terror and panic feelings are very rare now and usually only happen during those 1-2 secs on electric stomach pain that happened once in the last 3 weeks.

 

To sum this up, I forget i have a "condition/thing/whatever you want to call this ordeal" most of the time now.

 

Its amazing being this close to normal again. I sleep as much as i want now, my sleep is deep and restful so i can function the next day. and its actually perfect if im not working. Like ive slept 8-9 hours straight for the first time and done it consistently all week in the last month. I can walk and exercise again, i haven't had palpitations in months, even though ive increased the exercise. bowels and kidney function normal 95% of time again now.

 

That buzzed feeling, where i can feel my spine and nerves like they are powered up, is very rare now and even when its there it hardly ever comes with symptoms. Just feel a little on edge.

 

My anxiety is normal. I feel like my mind is my own 99% of the time now. (still get some occasional looping thoughts/weird thoughts that dont feel like me) and im not jumpy, if someone surprises me my heart rate doesnt spike and i dont spiral.

 

so all in all - cognitive 90% or up, physical 85% back to normal, psychological, 90% back. I consider this last stuff just the echos of the crazy place where i was.

 

To all of you, please feel hopeful, at 2 years i was sure i was stuck in this semi disability state, and a year before that i was sure i was stuck in hell. Now i live a normal lifestyle, loud music and movies, games, some sports, work, air travel, trying to lose some weight, trying to push some boundaries and self improve, all without tanking my system and throwing myself into some weird time warp back to hell of acute.

 

Hang in there all!. Thinking of you and praying your healing comes in a flash!. Stay strong, your all doing so well. We are in this together dont forget, never alone!

 

Pinky

 

p.s. for those who need something to try and are desperate. after 3 years of this ive found only two things that improved some tryuly haunting symptoms. One is singing loudly and with all your force. I was dragged to a karaoke for a friends bday against my will in dreadful fear, hours in a small box with insane loud music, i tried every excuse i had but they persisted and pulled the bday card. my sxs were all over the place in there, i was panicing like crazy worried id pass out. Until i was forced to really sing and it was truly revealing. That vice like grip on the muscles that tightens everything up, that higher anxiety.....it melted away. the total immersion and diaphragm loosening seemed to turn it off. I still use this as my 'in case of emergency' leaver if i cant relax my diaphragm some days and am worried about sprialling. IT WORKS!

 

Next is meditation, this one is harder, because if my cognitive symptoms are flared up, there like this crazy block in my psych/ spiritual mind. DOnt just pay attention to breathing like in 'guided meditation'. Do this particular meditation, picture the most peaceful and relaxing childhood memory and visualize being in it again. I learned this from a good psychiatrist (a friend, not my dr) who was very big on meditation. Pay attention to the scenery, like really see the colors and hear the sounds, and sit peacefully in the memory and watch your thought pass in front of you. This type of meditation is deeper and harder but it works 100% if i can can access and visualize and place myself in the memory. Its weird cause you need your imagination to put yourself back there and if im too strung out i cant imagine anything, my mind is just blank. I cant explain how the feeling of all my symptoms just lift and leave my body if im in this memory now. Its like a spell its crazy effective. Some days i can turn everything off, my breathing, my anxiety, my sleep block, everything. and the next day im 100% back to normal breifly. Its heavan and its a gift this thing.

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Who in this group is still having problems with mental symptoms after 22 months and if you are what did you do to help yourself?
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  • 1 month later...

Hi all!

 

I haven't posted in a really long time. I do love this thread though and keep up with it. I'm wondering how everyone is doing?

 

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Hey Dash,

 

I’m not good. Severe insomnia and fatigue at 25 months off. Crushing my soul. Hope you are ok.

 

Thanks for replying! Sorry you're having such a rough time! I'm as OK as I can be - but not yet OK. Still waves/windows. Overall better but still not back to fully functional. One day at a time.......

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  • 3 months later...

Hi everyone 👋

I am 20 months off and having awful boaty feeling and vertigo. It's non stop. Anyone else deal with this?

 

Keep going!!

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  • 3 months later...

I’m commenting to bring this post back. I liked reading through it. Thanks all.

 

I’m having trouble finding hope at 35 months.

 

How many of you have healed since commenting on here?

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  • 1 month later...

I am not off long but have been following this group s sone of you have symptoms I have.

 

Just wondering how you are all doing?

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I’m commenting to bring this post back. I liked reading through it. Thanks all.

 

I’m having trouble finding hope at 35 months.

 

How many of you have healed since commenting on here?

 

Quite right, Meganz!  :thumbsup:

 

Lots of friendly 'faces' around here  :smitten: I hope most are doing MUCH better now, and that the others are well into healing and lift of symptoms is just around the corner now. I am thinking of you, BB Warrior Friends. Stay strong, keep fighting as long as you need to. After all that time, all that healing-time... the light at the end of the tunnel can't be far!

 

And we are in this together  :thumbsup:

 

I am not off long but have been following this group s sone of you have symptoms I have.

 

Just wondering how you are all doing?

 

Hi Ajusta!  :smitten:

 

It's good to see you here. Congratulations on being off, my Friend!! Waw, I am so happy for you. Big big big congratulations  :thumbsup: How are you doing yourself?

 

Still in a wave here, with crushing exhaustion as a new symptom starting month 40  :idiot: Now month 44  :sick: Lately, I have been taking two naps a day. Not a fun way to live for sure, but that kind of enables me to have 'more energy' (relatively speaking!!!). Still plenty of mental crap to deal with on a daily basis, and the general trend of growing agitation/akathisia as the day progresses, with a peak around 5 to 8pm. Then I'm exhausted and half past out again  :sick:

 

BUT I am still reading and able to watch and follow some programs on Netflix (the best way is when I am busy eating or prepping meals) - which are two things I wasn't able to do in the first three years! And I couldn't rest either... so I guess my CNS has calmed down some  :thumbsup:

 

...still hoping I get a second window sometime, or better still, turn my first big corner and really feel the healing... As one of my dear BBs Friend puts it, I know it is not a matter of 'if' that will happen, but a matter of 'when'  :thumbsup:

 

Warm Healing Hugs!  :smitten:

Julz

 

PS: 2021 has to be our year  :thumbsup: Best Healing wishes to all!  :smitten:

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