12-18 month support

[[Aq...]]

Wow, we all seem to be going through the tough stuff together.  I have been slammed the last few days.  Some of the worst dizziness/head symptoms yet.  However, the weird thing is, it feels different than previous waves.  I can't even describe how it feels different.  It is equally as bad, if not worse, but different.  It almost feels like a completely different set of symptoms, but the end result is still dizzy, stiff neck, full head, d/r etc. 

 

[b]My latest thoughts are around blame.  I am tired of the blame game.  If i hit a wave, my mind goes straight to trying to figure out what caused it and how to fix it.  What did I eat? What is the barometric pressure? Did I push it too hard yesterday? Did I get enough sleep?  ENOUGH!!  AHHHHH!  It is hard enough to just deal with things how they are.  Why put more layers on top?

[/b]

 

Aqua, I think our psyches need to blame something in order to feel a sense of control.  therefore, if I did something to cause this, it follows I can stop doing whatever I did, eat sleep, adjust barometric pressure, etc,, you get the drift, and it should follow that we stop whatever we did to cause the wave, punishment, and then we feel better.  the mind is just trying to control what's going on with us.  the sad reality is most of our symptoms are truly unprovoked, and there's not a damn thing we did to cause them, and really not too much we can do until they pass, accept to stay quiet and self soothe.  our psyches don't like to accept there's nothing we can do to stop the suffering. so stop being so hard on yourself, you're suffering enough already.

 

Thanks GreenIce. 

[[Sk...]]

Sue, it is hard. I have been crying a lot, just despair, I feel in a very lonely place now. Mr Sky is a babe, bless his heart, but it's hard to know that there are so few non virtual people out there for us.

 

That we should be made to go through this, amidst total indifference or skepticism is insane.

 

My vibes are wild and my heart is pounding, hope it calms down, I have cut down on everything with sugar,  but as you said, a wave is a wave, no matter what you do.

[[Gr...]]

Well ... it is Monday ... still messing around with this head and sinus and anxiety and health fear stuff ... and the weather sure isn't helping ... who is in charge of that anyway? ... I would like to give them a piece of my mind ... there must be one lying around here somewhere ... 

 

We keep toddling along ... one day at a time ...

 

Have a good day, Folks ... 

 

Nova, yes, the weather is not our friend right now.  Although I don't think even perfect 10 weather would help me right now.  Bad wave, my friend.  I really didn't think this could happen this far out, lol.  stopped in my tracks.  fell asleep at 6 a.m., slept through the alarm, missed an appointment, feeling a little "defective, broken."  but I know i'm not, I know we're not, it's just tough going right now.  So what to do?  Take care of ourselves a little better for a little while until we feel better?  I don't know.  I'm running out of ideas! :'(

 

Thanks for your response on "the looks people give us."  I never "lose" that issue!  Whenever I have a tough wave, I feel this desire to be "acknowledged," I just want to let someone know what's going on, maybe just so I don't feel so lonely with it.  I'm talking about friends, lol.  you're very brave to approach someone in the medical community.  last time I did that, I thought the lady was going to call the psychiatric paddy wagon on me, put me away.  I swear that was one of my fears early on (3 months ago, lol ?

 

Feel better, Nova, have the best Monday you can, and I will try to do the same.

[[Gr...]]

Wow, we all seem to be going through the tough stuff together.  I have been slammed the last few days.  Some of the worst dizziness/head symptoms yet.  However, the weird thing is, it feels different than previous waves.  I can't even describe how it feels different.  It is equally as bad, if not worse, but different.  It almost feels like a completely different set of symptoms, but the end result is still dizzy, stiff neck, full head, d/r etc. 

 

[b]My latest thoughts are around blame.  I am tired of the blame game.  If i hit a wave, my mind goes straight to trying to figure out what caused it and how to fix it.  What did I eat? What is the barometric pressure? Did I push it too hard yesterday? Did I get enough sleep?  ENOUGH!!  AHHHHH!  It is hard enough to just deal with things how they are.  Why put more layers on top?

[/b]

 

Aqua, I think our psyches need to blame something in order to feel a sense of control.  therefore, if I did something to cause this, it follows I can stop doing whatever I did, eat sleep, adjust barometric pressure, etc,, you get the drift, and it should follow that we stop whatever we did to cause the wave, punishment, and then we feel better.  the mind is just trying to control what's going on with us.  the sad reality is most of our symptoms are truly unprovoked, and there's not a damn thing we did to cause them, and really not too much we can do until they pass, accept to stay quiet and self soothe.  our psyches don't like to accept there's nothing we can do to stop the suffering. so stop being so hard on yourself, you're suffering enough already.

 

Thanks GreenIce. 

 

P.S.  symptoms do change dramatically, it does feel totally different.  that's good, it's healing.  put your seatbelt on, the ride starts to change!  feel better

[[Gr...]]

Sue, it is hard. I have been crying a lot, just despair, I feel in a very lonely place now. Mr Sky is a babe, bless his heart, but it's hard to know that there are so few non virtual people out there for us.

 

That we should be made to go through this, amidst total indifference or skepticism is insane.

 

My vibes are wild and my heart is pounding, hope it calms down, I have cut down on everything with sugar,  but as you said, a wave is a wave, no matter what you do.

 

Sky, it's very, very hard.  I'm feeling very broken, very defective right now, so I understand completely, the despair.    and, no, other people cannot seem to get this.  there is just no way to sufficiently describe this level of suffering.  I've even spoken to people who say they went through a tough benzo withdrawal, and it just pales in comparison, they can't relate to what I'm saying, the blank look is there when I talk about certain symptoms, symptoms that anyone on this thread would immediately understand.

 

I had the pounding heart at 5 a.m.  It started so abruptly I was taken aback, and then I was worried because I did have an SVT problem, like Gart had, and I had the procedure to correct it, so I was worried the palps would -- whatever. 

 

You are young, your heart is strong, it's going to pass.  I'm having the vibrations, the palps, not sleeping, the fog.  So it seems we're all on schedule.  although it does suck, this schedule.

Get some sleep.  usually by the time we want to break down and cry, things start to improve, if I remember right.

[[Co...]]

Green...I have been trying to look at the posts this morning.  I was out last night and this morning my daughter is here..

....Lot going on on the thread this morning...

.The Look.  man how many times have we been withered and shamed and angered by it. To me it always says, "  oh come now.  Be reasonable.. You can't possibly believe this is w/d after all these months. "  It's the same look people give to those who believe in alien abduction.. ( hope I haven't offended anyone) .  That look makes me want to slap thier face..  and I am a total pacifist. It is such a lonely hopeless feeling to feel that the people who are supposed to help us don't believe a word that comes out of our mouths. ...I could not have made it past month 3 without the  buddies here.

.  Green, I am so sorry that you are having the d/r .. it's the worst. I lose connection with time.. on the same day. I can't quite remember what happened in the morning.  Or the morning feels like it happened days ago.  I can't explain it exactly.  Literally a feeling of being lost in space like Sandra  ullock in that movie.  Cut off from people, time and environment.  Drifting in some sensationless weightless nothingness. It is so scary and disorienting. ...Green, this is not how it's going to be...I remember a few months ago when you posted, " I got my mind back!"  That's going to come back. Our clarity is going to come back. I hate d/r .  I hate head pressure more. The second year sx are so different than the first year sx.  Horrible, but in a different way.. I don't have words for it. You are so hugely brave for declaring a cease and desist on the highway robbery that w/d wages on us ...taking pieces of our lives ...over and over.

. I am with you Green...you are right....this is going to end. Another 6-9 months. .. We can do it. I so hope your day is better today.  Love to you dear friend..  ...coop

[[Co...]]

Wow.. the thread is busy this morning...my daughter is here today, but I am going to try to get back on this afternoon .. Hoping this crap lifts for everyone as the day goes on

..  sending love and wishes for sunbreaks to everyone....coop

[[Sk...]]

Well ... it is Monday ... still messing around with this head and sinus and anxiety and health fear stuff ... and the weather sure isn't helping ... who is in charge of that anyway? ... I would like to give them a piece of my mind ... there must be one lying around here somewhere ... 

 

We keep toddling along ... one day at a time ...

 

Have a good day, Folks ... 

 

Nova, yes, the weather is not our friend right now.  Although I don't think even perfect 10 weather would help me right now.  Bad wave, my friend.  I really didn't think this could happen this far out, lol.  stopped in my tracks.  fell asleep at 6 a.m., slept through the alarm, missed an appointment, feeling a little "defective, broken."  but I know i'm not, I know we're not, it's just tough going right now.  So what to do?  Take care of ourselves a little better for a little while until we feel better?  I don't know.  I'm running out of ideas! :'(

 

Thanks for your response on "the looks people give us."  I never "lose" that issue!  Whenever I have a tough wave, I feel this desire to be "acknowledged," I just want to let someone know what's going on, maybe just so I don't feel so lonely with it.  I'm talking about friends, lol.  you're very brave to approach someone in the medical community.  last time I did that, I thought the lady was going to call the psychiatric paddy wagon on me, put me away.  I swear that was one of my fears early on (3 months ago, lol ?

 

Feel better, Nova, have the best Monday you can, and I will try to do the same.

 

Me too . Everything, from the need of validation to the fear of being put in a madhouse. Butas Nova, said " don't you are rock my boat" is what is motivating other people out there and keeping them from reaching out.

 

Sue, hang in there, feel awful too.

[[Sk...]]

Coop, so great you mentioning the Sandra Bullock movie, it just hits the nail on the head !

 

But why the heart pounding just as I am about to fall asleep ? I am sleeping, luckily, at least that, but I do have that thing that when i am about to, either I get jolts or my heart  pounds so loud and hard.

 

Sue, thanks, the thought that my heart is ok and healthy is the ony thing that keeps me from really going nuts when I have really bad moments.

 

Going to eat a very light dinnner, see you later.

[[No...]]

Green ... this isn't going to break us ... we are way too tough for that ... we have looked this crap in the eye for so damn long ... another while is all we need ... and some respite now and then ... and then we are done with this stuff ...

 

I went out this morning ... ice everywhere ... should have gone back in ... but I "had" to get to the library to pick up some holds that would expire tomorrow ... had to cross the parking lot at the library ... one cautious step at a time ... and panic running through my veins ... I am going to be lost out here ... I can never get back ... all the while taking one step at a time ... it was not courage or steadfastness or any of that other malarkey ... it was just brute stubbornness ... this ice is not going to beat me ... and having the panic attack from hell ...

 

Stubborn ... and we know what we are doing is right ... well maybe not walking across an ice filled parking lot ... and we don't give up ... we know. in our bones, this is what we need to do ... and we are doing it ...

 

Be Well ... 

[[dr...]]

Yikes...these waves are just hitting us all like the shore here  in Kauai. My morning head pressure and fullness is a pain the ass(or my head). It makes my head feel all unbalanced and my gait is funny because of it.  I haven't had this this long for a while. I'm on my eght day of this   Luckily, the fear factor of this is mostly gone and the head feels better as the day goes on. Just some snorkeling from the hotel and relaxation today.  Hope all of us get a break that continues on forever

[[Lo...]]

Green ... this isn't going to break us ... we are way too tough for that ... we have looked this crap in the eye for so damn long ... another while is all we need ... and some respite now and then ... and then we are done with this stuff ...

 

I went out this morning ... ice everywhere ... should have gone back in ... but I "had" to get to the library to pick up some holds that would expire tomorrow ... had to cross the parking lot at the library ... one cautious step at a time ... and panic running through my veins ... I am going to be lost out here ... I can never get back ... all the while taking one step at a time ... it was not courage or steadfastness or any of that other malarkey ... it was just brute stubbornness ... this ice is not going to beat me ... and having the panic attack from hell ...

 

Stubborn ... and we know what we are doing is right ... well maybe not walking across an ice filled parking lot ... and we don't give up ... we know. in our bones, this is what we need to do ... and we are doing it ...

 

Be Well ... 

 

You said the key word...respite! That's what's missing from my life! Between doctor appts, work, raising my son on my own...I need a huge timeout!

 

I would love love love to be bold and drive to the beach (when it gets warmer). I need to see the ocean, walk the board walk, feel the sand.

 

Ok...going to make plans and I have a friend coming to visit in the next month or two and she drives. We can split the driving!

 

Drew...the awkward gait/head stuff/ear pressure is my WORST symptom. It's daily...all the time! Glad you're pushing through and having fun in Hawaii!

 

Aloha!

[[dr...]]

Oh...I just remembered while I was in the worst of the wave a few days ago my therapist on call was making me doubt the majority is withdrawal based and my thoughts are adding to to my bad times.  He doesn't deny my physical stuff but thinks my pains are psychosomatic.  I started believing this but in addition to all the stuff I, getting how can I " think" head pressure and all these myconic jerks I've been getting in my legs as I doze off.  They startle me awake and I've only had them regularly in waves.  Hmmm

 

Another great mystery in this shit process... Vi did a very difficult hike yesterday and I thought I wouldn't be able to move today but I have the least amount of muscle pain this week  

 

As Aqua says trying to figure this out can be maddening.  Acceptance is key

[[ci...]]

drew, I been following your posts for so long, and have seen your struggles and pain. I find it extremely difficult when we are not believed by the medical profession, I have never been believed by 7 medical doctors ( 2 psychiatrists, 2 neurologists, 2 PCPs, 1 RA doctors) even when I gave them the Ashton Manual they did not bother to read it. I know your pain, and it is very real, I believe you, I believe every word.......so sorry for your pain.

 

 

[[dr...]]

:smitten:

[[Gr...]]

Green...I have been trying to look at the posts this morning.  I was out last night and this morning my daughter is here..

....Lot going on on the thread this morning...

.The Look.  man how many times have we been withered and shamed and angered by it. To me it always says, "  oh come now.  Be reasonable.. You can't possibly believe this is w/d after all these months. "  It's the same look people give to those who believe in alien abduction.. ( hope I haven't offended anyone) .  That look makes me want to slap thier face..  and I am a total pacifist. It is such a lonely hopeless feeling to feel that the people who are supposed to help us don't believe a word that comes out of our mouths. ...I could not have made it past month 3 without the  buddies here.

.  Green, I am so sorry that you are having the d/r .. it's the worst. I lose connection with time.. on the same day. I can't quite remember what happened in the morning.  Or the morning feels like it happened days ago.  I can't explain it exactly.  Literally a feeling of being lost in space like Sandra  ullock in that movie.  Cut off from people, time and environment.  Drifting in some sensationless weightless nothingness. It is so scary and disorienting. ...Green, this is not how it's going to be...I remember a few months ago when you posted, " I got my mind back!"  That's going to come back. Our clarity is going to come back. I hate d/r .  I hate head pressure more. The second year sx are so different than the first year sx.  Horrible, but in a different way.. I don't have words for it. You are so hugely brave for declaring a cease and desist on the highway robbery that w/d wages on us ...taking pieces of our lives ...over and over.

. I am with you Green...you are right....this is going to end. Another 6-9 months. .. We can do it. I so hope your day is better today.  Love to you dear friend..  ...coop

 

Yes, the alien abduction response look.  Is it that they don't believe us?  I did it again tonight, I'm so mad at myself, tried to explain why I was a little off.  The woman just stared at me like I had two heads.  why, oh, why can't I just stop doing that?  I feel so damned defective bad after I do it, yes, you're right, the look is so withering and -- shaming.

 

Coop, you described the DR perfectly.  stranger in a strange land.  no memories, no past, no future.  Boy that sounds so bleak, lol 

 

the whole day isn't that bad.  I do get a lot better in the late afternoon, early evening.  I don't have the awful body pain, the terrible fatigue.

 

anyway, trying to get to bed before the sun comes up.  off I go.

[[Gr...]]

Green ... this isn't going to break us ... we are way too tough for that ... we have looked this crap in the eye for so damn long ... another while is all we need ... and some respite now and then ... and then we are done with this stuff ...

 

I went out this morning ... ice everywhere ... should have gone back in ... but I "had" to get to the library to pick up some holds that would expire tomorrow ... had to cross the parking lot at the library ... one cautious step at a time ... and panic running through my veins ... I am going to be lost out here ... I can never get back ... all the while taking one step at a time ... it was not courage or steadfastness or any of that other malarkey ... it was just brute stubbornness ... this ice is not going to beat me ... and having the panic attack from hell ...

 

Stubborn ... and we know what we are doing is right ... well maybe not walking across an ice filled parking lot ... and we don't give up ... we know. in our bones, this is what we need to do ... and we are doing it ...

 

Be Well ... 

 

yes, another while is all we need.

 

You're lucky you didn't break your damned neck!  The ice is really bad even down here.  But it's that same stubbornness that's carried you through.  spring is almost sprung.

[[No...]]

Green ... 3 AM here ... got a few hours of broken sleep ... my wife had some "direct" words for the old fart when she got home ... some talk about one of those ankle monitors she can turn on and off and zaps me at the front door ... hmmm ...

 

Hope you get some sleep ...

[[No...]]

Well ... -32 Celsius out there this early morning and another storm coming tomorrow ... guess I won't need the ankle thingie for a couple of days ...

 

It was the end of January last year, before I re-connected with BB, that I started my descent down the deep, deep rabbit hole ... took all of February and most of March to get to the bottom ... and then popped out the first week of April ... and the driving energy was DR and health fear ... so easy to see it now ... and so helpful to be able to remember it ... and this winter I am not alone ...

 

Hope we all find what we need for this Tuesday ... the last one in this February ... 

[[Sk...]]

Green ... 3 AM here ... got a few hours of broken sleep ... my wife had some "direct" words for the old fart when she got home ... some talk about one of those ankle monitors she can turn on and off and zaps me at the front door ... hmmm ...

 

Hope you get some sleep ...

 

Nova, your wife has a point !

 

Today, I am not having the palps just this terrible irrational anxiety. I just have it and then, look for a reason, a focus for this anxiety. Never really know what is worse the palps/ vibes combo or this fear.

[[Sk...]]

Oh...I just remembered while I was in the worst of the wave a few days ago my therapist on call was making me doubt the majority is withdrawal based and my thoughts are adding to to my bad times.  He doesn't deny my physical stuff but thinks my pains are psychosomatic.  I started believing this but in addition to all the stuff I, getting how can I " think" head pressure and all these myconic jerks I've been getting in my legs as I doze off.  They startle me awake and I've only had them regularly in waves.  Hmmm

 

Another great mystery in this shit process... Vi did a very difficult hike yesterday and I thought I wouldn't be able to move today but I have the least amount of muscle pain this week  

 

As Aqua says trying to figure this out can be maddening.  Acceptance is key

 

It is not statistically  possible for so many people all around the world to have these same  pains and for them to be all psychosomatic. I am surprise that these people that should have a scientific approach don't seem to believe scientific evidence and end up being more non-empirical, dogmatic than laymen. If he is a good doc despite that, just be patient and keep that side of wd to yourself. THe pains are wd, don't you  doubt that even for a second.

 

The problem is that we start doubting ourselves when therapists say these things. And we can't afford to do that.

 

Everybody, hope you will have a better day.

[[No...]]

Hi Sky ... sorry you are still "in the soup" ... nothing new I can add ... we are getting there ... as best we can, day by day ... hope it is warmer where you are ... it is now -35 Celsius around here today ...

 

Not going out today ... might freeze something essential ... 

 

Have a good day ...

[[Gr...]]

Green ... 3 AM here ... got a few hours of broken sleep ... my wife had some "direct" words for the old fart when she got home ... some talk about one of those ankle monitors she can turn on and off and zaps me at the front door ... hmmm ...

 

Hope you get some sleep ...

 

You're in trouble now!

 

[[dr...]]

 

I had a tough night of terrible nerve/body pain. When it persists my mind goes into anxious state and obsesses.  I am Fine mentally when not bombarded by symptoms. I KNOW my heart is fine but the anxious mind convinces me something is terribly wrong.  Took Tylenol and feel much better but can't keep eating the stuff.  On the plus side, I really enjoyed a three hour horse ride.  Now back at the pool for last day.

 

Aloha

[[pe...]]

Things have been weirdly better and hard at the same time. I'm stressed out as I wake up to my world and I'm fragile. Man, am I fragile. And if I can stay out of the black depression, I will be ok. But today it nipped at my heels and so I literally tried to outrun the thing with a 25 mile jog in 10 degree weather. And now I am home and will try to go to sleep early and pray these things are enough to keep the deepest despair away. It's been awhile and it has not been missed.

 

Yesterday I danced with my son to my favorite song, I talked with my sister about music and I made my husband laugh. It hasn't all been about withdrawal lately, thank you God! But it's still there in the corners. I hope I beat this. I hope I get to walk away more or less unscathed.