12-18 month support

[[dr...]]

Good morning all...

 

Still feeling wonky.  Today I have severe cogfog.  I Have been dealing with something all the time for a few weeks now.  During my windows and when they first close I forget how long and bad waves are.  Once they return I try and fight all the symptoms to no avail.  It's my instinct.  I was sitting here questioning why my brain is so retardo this am and it hit me. I need to accept this for what it is and try to do the best I can. I need to stop fighting the symptoms and just accept them. At ten months I shouldn't expect anything and if I feel good it's a bonus.  Once again, the beast has reset my expectations until I have to go through this whole process again. 

[[Gr...]]

Today, is my day off after a really bad wave day. And today I woke up, and felt better, but I was exhausted, so tired and I did not know what to think. I admit, I was discouraged.

 

Anyway, today is a better day and that is all that matters, and I am taking advantage of it to do things I can't normally do. There is this sense of urgency.

 

Nobody  mentions it here, so I guess it's just me, but I have got an incredible amount of white hair. I have had grey hairs since I was 28, it's something that runs in the family, we get white hair young, but now, I have to colour my hair every week, which is nuts! What will I be doing at 60 ? Now, my mother has less white hair than I do !

 

So checked if wd had anything to do with it and there are some people who complain of their hair going white because of the suffering. Do you think it's possible ?

 

Well, this is my complaint of the day !

 

Sky,

 

I went completely gray in withdrawal.  Also, my hair "frizzled" and fell out.  I used to scoop handfuls of it off of my pillow in the morning.  Funny you mention hair.  When I was drying mine, I realized there was some hair in the brush, but nothing like the giant handfuls I used to get.  I could have stuffed a pillow!

The gray, I went from a cellophane, to hardcore chemical dye.  no, I don't think the gray goes away.

 

You do it every week?  Just the roots, I hope.

 

I don't lose my hair as much as I did before, but I do dye the roots every week and it's maddening.

 

Today is my bad day, it's really bad. I know it's hard to quantify  our suffering, but now the bad days are even worse and the good days are better. Does that make sense ? Do you know what I mean ? Is that the same with you guys ?

 

HAve a nice® day. 

 

Sky, yes, "but now the bad days are even worse and the good days are better."  Yup. I'm so upside down with bad days/good days, I don't even know how I feel.  Today is good I guess, no DR, cog fog.  I have no desire to lose myself in ancestry.com.  So whatever makes me want to do that is not present today.  However, I shoveled some snow, and I absolutely hate how my chest feels.  I got so concerned I stopped.  A little head pressure, and feeling like, okay, what should I do now?  I'm not sure what to do.  Don't feel terrible, but not ready to climb the summits, not there yet. 

[[Gr...]]

 

 

I see many of you are in the waves and weathering. I'm sorry for your suffering. I'm thankful for your companionship. This little thread is a wonder.

 

I'm just visiting as work and family are ramping up and it's all i can do to renember where I'm supposed to be at any given time and hold on. But I have been feeling this thing simmering beneath my symptoms and it's so foreign that I couldn't put my finger on it until yesterday. Under all this crap I feel HAPPY. Wo. It certainly feels a little weird to have some (quieter) intrusive thoughts, anxiety dr and blahs but a sense of joy all the same. I'll gladly take this turn away from depression. For sure. I wish I could just sit home, kick my feet up and enjoy it. But alas, I must return to work for the fourth day of proctoring a standardized test for second grade children who are threatening mutiny with each turn of the test book pages.

 

I'm thinking of you.

 

Hi ho, hi ho it's off to work I go....

Peace2

 

[[Gr...]]

Nova, yep..nothing like a panic to wake you up....so sorry. I hope it calmed down through the morning...and I hope you are less the snow and ice.....

........I am in the soup with you, but the soup is not as hot. I got some good sleep, but the woozy dizziness, nausea, cortisol spikes and anxiety is hanging on. No d/r yet...I was flat on my back yesterday to keep the dizziness at bay.. but I can't just stay in bed all day. I will probably go see the doctor ( no no I don't want to go) to have a thyroid check and have my ears evaluated. I have a suspicion my ears are having a party as I had a fever on the weekend so makes me think it's a virus...but I don't want to take the drammamine because it works on the GABAs too ( I think...but not in the same way as benzos)... well, blah blah ...

.... Nova , I hope your day opens up to some more of those dunbreaks...and wishing you some melting of the snow and ice..  take care Nova....coop....

 

Coop, before you hit the doctor, FYI.  I have head fullness, like nasal and sinuses, congestion, and my ears are so clogged I have to keep swallowing to hear.  I was wondering if I had early allergies, but my suspicion is it's still withdrawal.  Don't know if that's the same as your ears. 

[[Gr...]]

Coop ... lots of flu stuff going around ... I had a funky eye for a couple of days ... settled down on its own ... went out for a bit of a walk and had rubber legs most of the time ... feeling pretty "cast about" today ... lots of congestion showed up again today ...

 

And the running dog and pony show going on in the background ... this floating anxiety stuff ...

We need some freakin' sunshine and fair weather ... something to go out and bask in ... and it is coming ...

 

I agree, Nova, the weather is starting to get me down.  More snow today.  I've had it.  I know the way I know the sky is blue that you're going to feel a lot better once the weather breaks and you can get out more, we all are

 

I seem to be in a bit of a "mood" today ... got a bit of an edge on ... sure did knead the dickens out of that loaf of bread ... 

[[Fr...]]

Still really sick here overall and sick of being sick.

 

Worst days don't seem so bad overall but my good days are way fewer and that's scary, however the few good days I experience are amazing.  This week only Monday was good, but oh so good; I felt normal.

 

Other days are spent in bed or inside the house, in pain and suffering.  Sometimes I feel I'm in a creepy movie.

 

Peace2 so happy for you that you are having breaks from the depression.  This is great news.  Yes indeed.

 

Love to everyone else and good days of healing.

 

I'm so bored of my life indoors not doing much.

 

Lisa

 

[[Co...]]

Green...thank you for once again being the voice of reason. I agree.. I think this is w/d...and if it is a virus it will most likely run its course. If it's Menniers ...lying flat until it's over is about the best anyone can do outside of meclazine which also impacts the receptors so best to get by without. Yesterday I was full of anxiety and pretty convinced I was going to die at some point ( seriously) ...the 4 day wave in my mind had gone on endlessly...all of my health fears were having the celebration to top all celebrations. ....cut to today....mild sx when I got up....within a hour...at least a 90% wide open window...happy...all sx below the surface sort of there but no cog fog...no d/r...anxiety is just that residual mental fear of the fear...Still a little tired and I notice a little anxiety on  the inhale if talking fast and animated...had a busy morning puttering and walking outside in the sun with my dog and my daughter...still no hunger but when I started a sandwich with my daughter ...more tha

n half with no nausea......so blah blah blah...my point is I am not going to the doctor......like Nova....unless I can't get off the floor I am not going...

......Green...I am glad you gave up on the shoveling. if your chest hurt and triggered some anxiety..triggering more chest pain....more anxiety....well that sounds like a panic waiting to happen ....you did the right thing. My gawd...you guys have had the winter from blue hell. . Time for some sun Mother Earth...Sounds like you and me and Nova and Sky and Drew had the same day yesterday...in the boat comparing scars. How are you today? .. A few more weeks until Spring....a few more months to month 18.  We will get there...I hope you are getting some sun breaks.....thanks Green for your reply...it means so much to me.....coop

[[Co...]]

Drew, you are not retardo....'going with' the sx really takes a Zen Master.. sometimes we can do it but sometimes it is beyond us. I can go with the sx and accept them up to a point, but there is a tipping point for me....once that is breeched I am beyond anything rational and benzo w/d just mops up the floor with me. The last 4 days I was on the floor . I can't do half of what you do in a wave...I think that is the other part of surviving....endurance. One half acceptance....One half endurance. We will all be Abbey of the Healing monks by the time we are done here. ...Is your day letting up at all? ...Green and I both caught a great window in month 10 and waded in the waters of life only to also get caught in the undertow ....but those longer days and weeks of great baselines and fading sx are coming our way. I am hoping for you that your wave rolls out . .today... coop

[[Sk...]]

Still really sick here overall and sick of being sick.

 

Worst days don't seem so bad overall but my good days are way fewer and that's scary, however the few good days I experience are amazing.  This week only Monday was good, but oh so good; I felt normal.

 

Other days are spent in bed or inside the house, in pain and suffering.  Sometimes I feel I'm in a creepy movie.

 

Peace2 so happy for you that you are having breaks from the depression.  This is great news.  Yes indeed.

 

Love to everyone else and good days of healing.

I'm so bored of my life indoors not doing much.

 

Lisa

 

Amen to that. Lisa it's so nice to see you again, I was just thinking of you a few days ago. It's hard for me to keep up with people, so much fog still in my head.

 

I will be going to bed shortly, I have become an early to bed girl, who dares risk the anger of wd ? Who would have thought that me the queen of insomnia would  change so much ?

I know so many buddies can't sleep, still have sleep problems, wd is 1000 times as harder without sleep. 

 

Now, I am going to bathe and read my book in bed. Hope you guys have a nice evening.

[[fi...]]

Hello friends, I am new to this thread. A friend of mine turned me onto this group when I was speaking with him the other day so I thought I would reach out.

 

I just reached 13 months a few weeks ago and I am still struggling very much. I just wanted to post here and explain a bit how I have been feeling lately and hope that I can get a bit of insight back from you all.

 

My biggest thing with withdrawal past 13 months has been the anxiety. It has been absolutely relentless. The depression has gotten a bit better, I had it quite a bit the first 9 months. A lot of my physical symptoms have gone away. After month 10 I was able to do a lot of the physical things that I always do, but the headaches have not gotten better. I get at least 3-4 of them a week. I never had tinnitus, which I know a lot of people suffer from. At month 13. I find the biggest thing to be the MENTAL pain of this all.

 

It's even hard to write at times because I just feel like I go off on a tangent. haha I've been writing for an hour and I have only got this far.

 

But with the anxiety, I find myself asking a lot of questions. Is this me? At 13 months I have come so far! There have been amazing moments in my healing where I can actually handle the stress of things better that I could even before the meds, but most of the time, I just feel like a walking trigger. Everything starts my anxiety, panic and desperation. it's frustrating and scary. Though, I know, we are all scared.

 

One of my biggest fears is that I HAVE healed (because I have started to feel a bit better) and that this anxiety is going to be this relentless forever where I am just jumping from place to place to find relief and comfort that doesn't work...

I have just read a lot on this forum of people who actually feel more self confident in the place they are now than they have ever been. I would like to be there someday. Just feeling desperate and trapped. :'(

 

It's a completely blurred line for me. Am I better and this is who I am? Or do I have a long way to go?

 

God bless all of you.

 

[[Fr...]]

Thanks Sky.  I hope you sleep well and feel great tomorrow.

 

Lisa

[[Co...]]

Hi Lisa, so happy to hear that your good days are better. That's where I saw my improvements...on my baseline and better and better windows. I had the same pattern .. the time between my windows got stretched out but my windows got so happy. At 16 months I am also still just puttering around my house, taking the dog for a walk, doing better with having friends or family over . Last year I could not get through a movie.  one of my 'big' improvements this year is to get through a movie.....yep boring life still....but better than last year.  and next year will be better yet. ...Easy to say today because I am having a nice sunny window today....yesterday , I honestly wanted to give up...one of the worst waves since month 6....after 10-12 days of consistent 85%-90% baseline. My wave lasted 4 days ...of constant sx.  the longest solid wave I have had in weeks, but my baseline is better today. .

......Lisa, I think the fact that your windows are brighter is a really good sign of healing..  and I honestly believe that our lives are going to return to us ...however you couldn't have convinced me of that yesterday...honestly , after yesterday, I am delighted to putter in peace with all the sx dialed down to hardly there.  It sounds like you are healing Lisa.  We really are getting there....coop

[[Co...]]

My thought for the day....

.....I think year 2 is all about recovering from year one....lol..

                      coop

[[dr...]]

Coop...i'm struggling a bit and watching the clock at work.  No real cycling today although I feel on the precipice of a panic.  Oh well...been through this before.  Just lots of constant boatiness when I walk.  Floors feel uneven and my head/eyes are wierd.  In an hour i can meditate and relax for a few hours then I perform.   

[[Fr...]]

Thanks Coop - it sounds like you are doing much better.  So happy to hear that for you.

 

I am so confused about myself though.  Things have changed, that's for sure. I don't seem to get that full body rigor mortis feeling of pain every other day where I just hung on till it lifted into a window in about 24 hours.  No. Lately it's still really nasty where I have to be in bed, wiped out, nasty head stuff going on that makes me feel in a scary movie and major pain especially in my legs (nerve pain) then it eases into a lesser bad day, then less bad, then who knows.  So few windows though.  The waves are still really awful.  I hope they lessen in less than 12 months like last time.  I am so worn out.  Beyond.

 

I scream, cry, moan.  My poor husband.  I adore  him.  His shoulder hurts him so bad.  I'm sure it's from stress from me.  He is sticking this out with me and is a trooper and keeps me going on the worst days when I'm ready to give up.  He is amazing.

 

Joel Osteen has a good sermon about sticking it out that is good, #505 for those interested.

 

Green - good to see you here - I was hoping you were feeling better.

 

Love to you all.

 

L.

 

[[Fr...]]

LOL Coop

 

yes that's for sure

 

I hope we all can meet one day soon, in awesome health

[[Co...]]

Drew, that is exactly where I have been for the past 4 days ( lifting today).  Right back to early acute.. what the heck!...You and I and Green either have the same virus ....or..  w/d.

. .. I know just what you are experiencing . I am really glad to hear that it's almost going home time for you. I really don't know how you and HH and Peace manage jobs..  My wave like the one you are in lasted 4/5 days...longer than any wave I have had with constant sx since month 6. ..It seems like this should start unraveling for you pretty soon. .. Yes, the anxiety.  I haven't had that ' I am going to die' anxiety every 30 minutes for days,on end for months.  Yep, some meditation .. can you get a massage ...lay around with some tv or movie this evening ?.  This will get better Drew.  Thinking of you....coop

[[dr...]]

No relaxation tonight.  I have a performance.

[[Co...]]

Drew, my eyes were wierd too.  It was hard to read and reading on my smart phone screen made me nauseous. I also had heavy mind stifling head pressure and cog fog so thick that it was hard to follow a conversation. It is 90% better today....but so afraid it will come back.....so sorry Drew...coop

[[Co...]]

Drew....a performance ...really? ...whoa...you are about 1000x stronger than me...knowing you Drew, you will get through it. I hope you can catch a little break between work and performance .I will be saying a Hail Mary for you...maybe a few. ...let us know how you are later ..sending love to you.....coop

[[No...]]

filmcritic88 ... welcome ... please feel free to join in ... this is a very caring, understanding, and quite eclectic groups of souls ...

 

Many of us have asked, over and over, is this as good as it gets? ... and for me the answer is a resounding no ... I expect a full and complete recovery ... and I will stay with this process until it arrives ...

 

All the success stories I have read say we heal completely ... we just do not know how long it will take ...

 

Time, patience, acceptance ... with a measure of gripe and hoot and holler ... we will all get there ... nobody gets left behind ...

 

Be Well ... 

[[Co...]]

Hi Filmcritic....you are so welcome here. This is a wonderful group of BBS who have suffered thier way into the second year. Everyone here is caring and compassionate and many of us have been traveling together since month 6...I could not have made it past month 6 without the support and understanding of my friends here. It seems like we kind of unofficially take turns being on the thread as it is needed sometimes to take breaks , but this is a constant group who show up for each other . I have had BB friends post back and forth to me throughout the night during really bad waves.

.....I read your signature line... you have been through it. CT is brutal. ...It seems like all of us have a dominance of either physical or mental sx in each year. I still struggle with anxiety at 16 months ( I did a 6 month taper off of ativan) ...My mental sx were by far much worse in year one...more physical ( head pressure/headaches, body aches and insomnia) in year two, having said that all my health fear anxieties are triggered by my physical sx . Health fear has been constant over both years and at this point is still my most troublesome sx.

.....This is not how you are going to be forever. Most of us here claim undeniable improvement a few months into the second year ....and also the advent of new or returning sx...still hard but with a feeling of healing underneath the sx that was not present in the most part of year one.

  ....Most of us write of settling on at least moments of acceptance ( going with the sx as much as possible ) and enduring sx ( waiting them out as best we can with distractions, comforts, support and self care). Time really is the best healer...After reading success stories, sharing professional articles and conversations, and sharing the ups and downs with each other we seem as a group to align with the suggestion that the majority of people need at least 18-24 months for reliable healing.

      Everything that you write of seems completely consistent to w/d.  It is so hard, but I honestly believe that everyone heals...and as GreenIce says... ".nobody gets left behind" ...

. .  Come here as often as you need to for support.  It is abundant here....Wishing you healing.....cooperten

[[No...]]

I am getting more and more convinced that a background flu-like demon has gotten tangled up in some of our recoveries ... too coincidental that many of us are feeling the same way ... don't know what it means ... probably just have to wait it out like everything else ...

 

Going for deep cold again tonight ... -25 C or so ... and all day tomorrow AGAIN ...

 

Had a medium lousy day ... hoping to sleep it off tonight ...

 

[[Co...]]

Filmcritic, ...lol...I was typing while Nova sent reply. He said it all in one tenth of the verbiage.  Nova is our resident Sage.  A wonderful friend to all of us.  A Zen Master of " it is what it is until it isnt"..  I follow his posts for encouragement every day.. ...coop

[[No...]]

Hi Lisa ... good to hear from you ... many of us are really getting worn out ... Spring will be a welcome change to this (around here anyway) totally lousy winter ...

 

And things are quietly improving ... day by day ...