12-18 month support

[[Gr...]]

Sue ...

 

Can't say they are "disappearing" ... they are mostly certainly lessening ... and overall easier to be with ... and I mostly feel like things that have been dormant or messed up are slowly waking up ... into what I guess passes as normal ...

 

Sort of having to learn again what's normal ... and be with it ...

 

So ... yes, that is progress ... better than last year ... better than last month ...

 

 

M, yes, not disappearing, lessening.  And on the days when things are "heavy," I get discouraged.  And it's very confusing, what is normal, is that what you mean, our baseline?  I have no idea.  Sometimes I think some of the aches and pains are age related.  Then I know, no way, this is really bad, there are people in their nineties more spry than this, lol.  same thing with the thinking, the weird instrusives.  I wonder if they're real, relevant.  Then they fade away, until next time.

 

I was trying to stay in the moment, but here I am waiting for a window!

[[Gr...]]

Hi Buddies,

 

I just looked at my calendar and realized Ive been in this wave for about 3 weeks now.. It has been cycling all over the place--started with nerve pain, hands and feet completely numb, body weakness, joint and muscle pain, then I got apathetic, sad/lonely feeling, health anxiety, head pressure and the back of my brain is burning and tingling--oh yeah and the physical exhaustion. Last night I got a moment of clarity and realized this is all w/d because for a while there I thought I MUST have a serious illness. This morning I woke to heart palps! I don't get heart palps EVER, so it just confirmed to me that yes, this crazy ride Im on is all w/d. I will say that Iam able to function through this wave, and that I haven't been bed ridden--couch bound yes, but not bed ridden. Also, I wasn't thrown into full on depression but more of a sad/apathetic blah mood. So, I guess those are improvements--not much but I'll take it. I broke down yesterday and had myself a good cry, Im just sad that we are all still dealing with this... Im so thankful for this forum, otherwise Im sure I would be on some sort of drug or worse. Im in need of a hug..  Jenny

 

 

Oh, Jenny, I'm sending you mega hugs from the east coast!  I'm so sorry you've been suffering.  I am glad it's almost over -- isn't it?  and I know for sure you're going to see a real boost in baseline.  These bad waves this far out, any one of them could be your last.  I'm not just saying that, we both know that's really how it happens. :smitten:

[[Gr...]]

Hi Buddies,

 

I just looked at my calendar and realized Ive been in this wave for about 3 weeks now.. It has been cycling all over the place--started with nerve pain, hands and feet completely numb, body weakness, joint and muscle pain, then I got apathetic, sad/lonely feeling, health anxiety, head pressure and the back of my brain is burning and tingling--oh yeah and the physical exhaustion. Last night I got a moment of clarity and realized this is all w/d because for a while there I thought I MUST have a serious illness. This morning I woke to heart palps! I don't get heart palps EVER, so it just confirmed to me that yes, this crazy ride Im on is all w/d. I will say that Iam able to function through this wave, and that I haven't been bed ridden--couch bound yes, but not bed ridden. Also, I wasn't thrown into full on depression but more of a sad/apathetic blah mood. So, I guess those are improvements--not much but I'll take it. I broke down yesterday and had myself a good cry, Im just sad that we are all still dealing with this... Im so thankful for this forum, otherwise Im sure I would be on some sort of drug or worse. Im in need of a hug..  Jenny

 

And you're in that 16-18 place, where Dezlaz says her symptoms just started to fall away, one after the other.  Let's keep our fingers crossed.

[[He...]]

Hi Buddies,

 

I just looked at my calendar and realized Ive been in this wave for about 3 weeks now.. It has been cycling all over the place--started with nerve pain, hands and feet completely numb, body weakness, joint and muscle pain, then I got apathetic, sad/lonely feeling, health anxiety, head pressure and the back of my brain is burning and tingling--oh yeah and the physical exhaustion. Last night I got a moment of clarity and realized this is all w/d because for a while there I thought I MUST have a serious illness. This morning I woke to heart palps! I don't get heart palps EVER, so it just confirmed to me that yes, this crazy ride Im on is all w/d. I will say that Iam able to function through this wave, and that I haven't been bed ridden--couch bound yes, but not bed ridden. Also, I wasn't thrown into full on depression but more of a sad/apathetic blah mood. So, I guess those are improvements--not much but I'll take it. I broke down yesterday and had myself a good cry, Im just sad that we are all still dealing with this... Im so thankful for this forum, otherwise Im sure I would be on some sort of drug or worse. Im in need of a hug..  Jenny

 

BIG hugs for you, my friend.  These waves really, really suck.  :'(  I had my huge cycling wave in December, that was 3 weeks long, and I came out feeling better.  I'm back in a bit of a wave again, but it hasn't been as bad as my mega wave.  Hang in there.  We WILL come out of this, sometime.

 

[[Co...]]

Wow. A lot of pain and battle fatigue here today. The good thing....we are all experiencing the same sx at roughly the same stage of recovery....14-18 months. It most certainly has to be w/d. ...

.....JENNY.  My heart is with you, and I could have written your post myself today. I have also been in the longest wave since month 8. I had great progress in the first 2/3 weeks of Jan.  Now in day 12 of a bad wave that at best has teased me with momentary sunbreaks. I thought it was lifting last night but I have had brain zaps ( hard ones) and anxiety with d/r d/p and cog fog all day. I thought I had left heart palps long ago ( pretty good since month 8 I think)...last 3 days  they are back with pounding... Like everyone who has posted this week I have body pain (  back, shoulders, neck and ribs).

As usual, the head zaps and burning  make me crazed with fear, but I am holding my own just because I have had them before and I am still here...

....NOVA.. Glad to hear that you got checked out and it's all good. Still ,I know the body pain is awful. I think you and I have been living with it for almost a couple of months. Mine set in at month 13.  I still have it...terrible at some times but lessening at other times. A massage is a good idea. I don't like full body massage but chair massage can really help...I just can't aford them and I think I need 3 or 4 each day. Lol. I thought the link that was posted in the responses to your thread on the w/d board was very helpful. I opened it up and the diagram and it explained a lot about head and shoulder pain ...if I knew how to cut and paste it I would paste it to our group...it was very reassuring . ...Nova Michael...we with you..following you and walking along with you...

.....GREEN... yes, that's it exactly...sx not disappearing, but lessening.. ( not lessening enough ...dammit!) ...Baseline to me means...a steady hum of 'good' days.. maybe not a wide open day.. definitely not an effortless mind day but sx only in the background , able to be present, ( even with moderate sx), good clarity , maybe a notch above functional.  Reliable for at least 2/3 days and returns to the same level after a wave. My baseline was reliably improved in month 13 and the first half of month 14...even though I had some hard waves in that time frame, when they lifted my baseline was still at least 85-90%. ...The last 12 days not so much. ...I can tell you.  Your body pain is not age. I am 65 with daily RA pain.. the body pain I have had on and off for the last 6/7 weeks is 100x worse.  makes RA pain look like a walk in the park. I have never had shoulder/back pain and tightness like this. ...Since we all have this ...and our complaints all sound alike I know it's w/d...This will end and we are tougher and better than we were a year ago. As Nova says, " just not better enough".  Can't agree more. Last year I was in bed most of the day...Beulah is at 17 months and doing consistently better and she had one of the toughest acute that I have followed. GMIT is doing very well with a momentary slump due to stresz. This long wave at the end of month 14 and the brain zaps of this morning tried to rattle me ...and actually they did scare me, but once again receiving and offering support here on this board has helped me endure sx and discouragement. I do believe that we are all going to heal. I have my eye on month 18. I won't give up at least until month 18..I won't give up at all, but 3/4 more months is all I can get my mind around today. ....So glad to see you here today Green, I always borroww courage from you. 

.....HH.... It is so encouraging to hear that you are feeling good again.  You are just ahead of us . Sprinkle the bread crumbs thickly.  .we all want to follow your path. Wishing you nothing but effortless mind days all the way to 100% healing

.....This is a long wave for us...after months of pain and the disappointment of on again off again windows and improved baselines. I won't lie.. .this one has been hard to take and it scared me.. but I'm in with all of you....just keep it going one day at a time. It is still early in year one surely better healing is around the corner....think I will put up a dome house and eliminate corners altogether... thank you dear friends for all the care , support and honesty that comes through this group. Wishing big ...really BIG windows to all of us.  coop

[[je...]]

Green,HH, Coop and everyone thank you so much.. Your support means so much to me 

 

Nova, your in my thoughts tonight.. Hope you are getting some relief 

[[No...]]

Jenny ... 

 

Couch bound is certainly better than bed-ridden ... good to hear ... we are all hanging together during this end of January wave stuff ... and we all getting there ...

 

Open my mail today ... there was my certificate to MA ... Muddler's Anonymous ... 

 

We are all muddling through ... soon this will be in our memory ...

 

[[No...]]

HH ... thank you ... as soon as I find their location I am posting it on BB so everyone can wipe them out ... 

 

Hope you have a good weekend ...

 

[[No...]]

Here is the link to the neck and shoulder thread I posted on the big board ...

 

http://www.benzobuddies.org/forum/index.php?topic=126200.msg1671005#new

[[Co...]]

Nova, ..thanks for posting that link..I thought it was helpful in explaining some of the neck/back pain...I was relieved to see that there was a rational reason and probably not a fatal condition....coop

[[No...]]

Green ... sorry for the "normal" confusion ... was  "foggy" here yesterday ...

 

We just keep going ... what more can I say ... I would love to ignore this stuff and get on with a life ... and I can't ... for now it is part of my life ...

 

There are times when I just want to hunker down in my foxhole and wave my middle finger at the world high over my head ...

 

Doesn't have much effect other then giving me a little shoulder exercise ... 

 

Hope you have a quiet weekend ...

 

[[No...]]

Coop ... I was thoroughly disappointed that it was not a fatal condition ... 

 

Once again the health fear demon got slain ...

 

Seems that demon has more lives that a herd of cats ...

 

[[No...]]

Coop ... these long waves this far out ... yuk ...

 

After a pretty good on Friday I was tired and tried to get some sleep ... broken and lousy so got up and here I am ... up and down ... plodding through Escher-land ...

 

Saturday will be okay ... right? ...

 

Take care, my friend ...

 

 

 

[[Co...]]

Yep, ..health fear...this is one of the worst waves since month 6/7.  But your foxhole visual made me laugh. Thanks Nova...hope you are out of the foxhole tomorrow...hope we all are ...coop

[[Co...]]

Nova, yes.. Saturday is another day...and hopefully a better one... rest well .  coop

[[No...]]

Gonna take my batteries out and see if I can get some more sleep ... this old guy needs some rest to keep up with those 90 year olds ...

 

Have a good weekend, Folks ...

 

[[Gr...]]

Nova, ..thanks for posting that link..I thought it was helpful in explaining some of the neck/back pain...I was relieved to see that there was a rational reason and probably not a fatal condition....coop

 

Coop, thanks for your last post, it was very positive and hopeful.  I'm slogging through some tough symptoms, we all are, but this year is different, I have my mind, and I know with certainty we're going to recover from this, all of us.  The second year is tough because we're exhausted.  I've been feeling so bad for so long I forgot there was a point to all of this.  We're going to feel better and be benzo free!  I've been trudging along on this death march for so long I forgot there was a destination.  But there is.  And we're all going to get there.

[[Gr...]]

Green ... sorry for the "normal" confusion ... was  "foggy" here yesterday ...

 

We just keep going ... what more can I say ... I would love to ignore this stuff and get on with a life ... and I can't ... for now it is part of my life ...

 

There are times when I just want to hunker down in my foxhole and wave my middle finger at the world high over my head ...

 

Doesn't have much effect other then giving me a little shoulder exercise ... 

 

Hope you have a quiet weekend ...

 

 

Yeah, this has been very, very hard, too long.  and, yes, for now this is our lives.  Every day I try to accept that and make the best of it. 

 

BTW, has anyone had a very, very painful scalp, too tender to touch, forget brush?  I swear you can't make this stuff up.

 

I'm going to check out the pain link now.

[[dr...]]

Green ... sorry for the "normal" confusion ... was  "foggy" here yesterday ...

 

We just keep going ... what more can I say ... I would love to ignore this stuff and get on with a life ... and I can't ... for now it is part of my life ...

 

There are times when I just want to hunker down in my foxhole and wave my middle finger at the world high over my head ...

 

Doesn't have much effect other then giving me a little shoulder exercise ... 

 

Hope you have a quiet weekend ...

 

 

Yeah, this has been very, very hard, too long.  and, yes, for now this is our lives.  Every day I try to accept that and make the best of it. 

 

BTW, has anyone had a very, very painful scalp, too tender to touch, forget brush?  I swear you can't make this stuff up.

 

I'm going to check out the pain link now.

 

 

I had the painful itchy scalp.  It was crazy. Had this while on klonopin several years ago.  They prescribed me a $400 prescription shampoo. Can't make this up.

[[Co...]]

Green , thanks so much for your reply...you totally get this...and I am so sorry you ( and all of us) are going through a tough wave. I am discouraged by this one but I do know it will get better. So wierd that you would mention the tender scalp. .my entire head is sensitive too...and it was brain zaps ( that I haven't had for awhile) that triggered my health fear and anxiety today. The diagram that Nova posted helped me get rational but I am just in no mood for this ...but tomorrow is another day and one day closer to being done.

....thanks again Green.. the support on this thread is incredible. ....better than 400$ shampoo...lol ...Drew, you are right...can't make this stuff up...

....Sleep well buddies. Wishing windows for all of us for tomorrow....coop

[[Sk...]]

Green ... sorry for the "normal" confusion ... was  "foggy" here yesterday ...

 

We just keep going ... what more can I say ... I would love to ignore this stuff and get on with a life ... and I can't ... for now it is part of my life ...

 

There are times when I just want to hunker down in my foxhole and wave my middle finger at the world high over my head ...

 

Doesn't have much effect other then giving me a little shoulder exercise ... 

 

Hope you have a quiet weekend ...

 

 

Yeah, this has been very, very hard, too long.  and, yes, for now this is our lives.  Every day I try to accept that and make the best of it. 

 

BTW, has anyone had a very, very painful scalp, too tender to touch, forget brush?  I swear you can't make this stuff up.

 

I'm going to check out the pain link now.

 

Sue,

 

OMG I had this a couple of nights ago. I was sort of itching, and then it got soo worse. I started to scratch it, absent mindedly, you k now ? THen when I realized what was going on, I forced myself to ignore it !! HUrt a lot, but then it got better. I didn't read other posts on it, and did not give it much thought !

 

Oh why  did I ever take this medecine to start with ?

[[He...]]

Hi Coop,

 

I wish I could leave crumbs to lead you out, but I'm back to being lost. Here it is, 4:08am, and I'm awake for the 4th or 5th time this night. Lots of physical stuff going on overlaid with a layer of fear and depression.

 

How can one feel so off, so wrong, like your body is literally failing, yet be "perfectly healthy"

 

I have such fear that this is my life now. That THIS is "healed".  That I'll always have intermittent days or weeks that I'm miserable. Sigh....everything looks worse in the wee hours of the morning. It's hard to be optimistic in a wave.

 

I'm sorrry you are struggling, too. Stupid benzos!

[[No...]]

HH ... 'How can one feel so off, so wrong, like your body is literally failing, yet be "perfectly healthy"' ... the multi-million dollar question ... and I sure don't have an answer ...

 

After a night of two doses of broken, unrestful sleep, I am in the physical pits ... not awful, just annoying as hell ...

 

So, today is a go slow day ... and today's bit of freezing rain stuff means no outdoors ...

 

And ... our bodies are not failing ... they are going about remedying what got messed up ... and I am thankful they are able to do this ... I sure would not be able to figure it out ...

 

Be well ...

 

[[He...]]

Thanks, Nova, for your encouragement this morning and always.

 

It's just so hard to understand how I can feel 100% and then be thrown back into The Pit, over and over again. It certainly doesn't FEEL like that is healing! I just feel mentally and emotionally beaten up.  This second year has been the most challenging, even though I was considerably more miserable last year.

 

Tomorrow I hit 19 months. That gives me 5 months of healing before I hit two years. I'm trying to remind myself that a lot can happen in 5 months.....

 

Sorry. I don't sound grateful for all the healing that has taken place, nor the fact that my life has continued on without significant change throughout this process. I am profoundly appreciative of those facts! Waves just have the ability to make me feel like a scared, small child.

 

I hope your shoulders, back, and neck release for you today!

[[Sk...]]

HH, today too I feel so angry and tired and childish and, and, and more !!

 

I have had some really bad last days, and I am exhausted. ANd I need to vent, but i have been venting forever, 15 months of venting, arrgh.

 

My palps are wild, my mood bounces around and my vibration are back and my handwriting is crazy again.

 

SO I am just so angry. It's because of my period, but you know ? there always seems to be a reason . ANd then there is the 15 month wave, and then the big 16 month wave. I don't know if there are really these waves, I am just saying I feel like a hamster running on  a wheel.

 

When do We get to catch some breath ? I have been running on a wheel for 15 months, not even the happiest of hamsters would want that. SOrry, but my day was pretty horrid.