12-18 month support

[[Co...]]

Beulah.  such great news.. you Enjoy every minute...you are sounding very good...this is about the time that HH started feeling so much better.  I think you were right...there was a lot of w/d healing going on right underneath that bronchitis.  I am thinking of you. Your post gives me hope ....we all do get better....coop

[[Fi...]]

Beaulah--"comfortble in your own skin" is a good way to describe it.  Also, I used to use that expression when I WASN'T.  I went off Xanax just about a month after you, so I'm following your story closely.

 

For me, healing at 20 months seems to involve a lot of being jerked around from good to bad....and back.  Yesterday I was acting like my old self, deep into a paint and wallpapering project.  Then spent the afternoon completely smacked down by rapid heart rate.  Better by evening--took a walk on the beach--and now I'm getting ready to push forward on this project again.

 

I wrote to a non-BB friend that I was going to try to start acting like a well person who is occasionally sick rather than a sick person who is only occasionally well.  She was quite encouraging of that, although I  wondered if she imagined that healing was all a matter of taking this attitude.  Clearly, it isn't!  Witness yesterday, for me. I am not in control of my CNS.  You can't really try to operate this way until the balance tips in favor of more good times than bad, and even when it does, I have to limit myself to plans that can be shelved in an instant.  Still not putting things on the calendar if they involve other people.

 

Thank God my husband has gotten so good at "managing" me!  I got to thinking after my post about not going to the ER that I shouldn't sound like I'm taking too much personal credit for that.  My husband has talked me down repeatedly and the one time I DEMANDED he take me to the ER (fever and high BP and freaking out I had the flu when somebody I knew had just DIED of it) he managed to at least back it off and make it a trip to Immediate Care.

 

So, for what it's worth to you all, I'm showing signs of healing.  Will love to hear about the healing signs of others!

[[Co...]]

FJ.. " we can not control our cns"...so we'll said...we can hone strategies and mind sets to help us endure but, for me, that seems the best I can do. And yes, the circular go no where spin of better and worse.. it wears us all down.

...The er thing...I think we all struggle with health fear to varying intensities and work out our individual stance on going to see the doctor. This year I also hit that in between resolution. If I feel like I really need to check something out I go to my physician's office. He knows my story and has a walk in policy for urgent care for his own patients.

.  That is what I live about this thread so much...it's all about support and hardly at all about general strategies...what helps one of us might be poison to another one of us. ...

....I hope your speeding heart is slowing down , that is such an uncomfortable feeling. Very glad for you that you have side by side support with your husband...It going to get better for all of us.. Beulah's post was a sunbreak in itself.. 

..  Wishing you a good day....coop

[[Co...]]

My question of the day...

....For those of us caught in this crappy wave...is anyone else shaking like a leaf for some portion of the day?.  This is still so acute like for me.. The mornings are a misery of nausea. dizzines and shake and shudder.. oh...and throw in a good portion of anxiety. It will break for a few minutes and then rev right back up again Yesterday it lifted in the afternoon but this morning it was right back. I am not drinking any coffee at all.  Totally that feeling of, . " please, somebody let me out of my body"..

....thanks buddies.. Wishing all of you  a day of sunbreaks.  .coop

[[Sk...]]

My question of the day...

....For those of us caught in this crappy wave...is anyone else shaking like a leaf for some portion of the day?.  This is still so acute like for me.. The mornings are a misery of nausea. dizzines and shake and shudder.. oh...and throw in a good portion of anxiety. It will break for a few minutes and then rev right back up again Yesterday it lifted in the afternoon but this morning it was right back. I am not drinking any coffee at all.  Totally that feeling of, . " please, somebody let me out of my body"..

....thanks buddies.. Wishing all of you  a day of sunbreaks.  .coop

 

Coop, not fear in itself, but when I have that very very brutal anxiety, and that is every other day, I am scared of it. But that is not what you are asking.

 

Sorry you still have so much fear.

 

In the evening, I get some fears, it's hard to keep under check with rational thought because by then my brain is out of sorts.

 

We are all having symptoms we used to have in acute, that seems to be our new drill.

 

Thankfully nobody thought to tell us any of this right at the beginning !

 

Coop, sending you  a big hug. 

[[Co...]]

Thanks Sky...man, I am sorry you routinely get this on an every other day basis.  Yes, nobody told us we would get a re-visit from acute.  Miserable.. Yes, I think better days will come. ..I hope you can get out on your bike today.  I really don't know how you endure full on sx every other day.  I want this to be done now for all of us....thinking of you Sky....coop

[[ON...]]

Please give me some hope, 15 months out and in hell, incredibly sick. It gets better? I'll survive this?

[[Fi...]]

Oneday---YES, you are going to get well.  I promise.  I believe it.  Can't say when just like I can't say it for myself, but I can see myself getting better and I don't see why it should be any different for you.  Yes, it's a total bitch.  But you're strong.  Hang in there.  One thought to hang onto that has proven true for me over and over is that YOU MAY BE FEELING BETTER ANY MINUTE!  It can turn on a dime, so don't plague yourself with thoughts of not being able to stick this out for another six months or whatever.  Nobody says you have to.  Your only assignment is to live through the next few minutes.  And then the next few minutes after that.  You're going to come out of this Super Woman!!!

[[ON...]]

Thanks finally! Why am I getting worse? Won't my body shut down eventually if I keep losing all this weight and the pain and anxiety etc? I'm 130 5'9" male. You said I'll be super woman and I wouldn't be surprised if I turned into a woman!! LOL, nothing would surprise me in this withdrawal. Haha.

[[sa...]]

Coop -- sorry you are feeling so bad. I was a little better today -- maybe 60% and was able to get out for a walk and get a few things done around the house. I did get a break from the awful nausea today, but the anxiety is still pretty bad -- toxic feeling. I hope I don't swing back to the nausea from tomorrow. I'd like to catch a break as I have a busy week at work coming up. One day at a time. We will get better.

[[Co...]]

Sas, it is huge to know that our sx are similar. My nausea was a little better too. Gator Aide is helping me some, but the anxiety has been non-stop...and just as you say.. very chemically toxic feeling .  with shakes and freezing cold. I have never had the shakes and trembles like this. I just want to stay in bed. The whole time I was out with my grandson all I could think about was getting back home to bed. It helps so much to know that others along my timeline are feeling similar...unfortunately....For me, all I can do is stay as comfortable as I possibly can and wait it out. Sometimes I can concentrate on tv and sometimes not. Morning is the worst.. and sometimes the afternoon it lifts...and then comes back for a second round. The shakes and chemical anxiety are lasting a couple hours at least.  Who would have thought...This can't go on forever. I am also somewhere between 50%-60%..  pretty dismal after months 14/15  at 8%-85%....I am seeing it on the boards as well...not just in our group.. I was just getting hit with a sx or 2.  now I feel mowed down..  Hold on Sas.  it's bound to end at some point...at least we are not alone in this....thinking of you....coop

[[No...]]

Coop ... "very chemically toxic feeling" ... that's what I have been feeling for several days ... don't know where it is from ... waxes and wains ... a very lousy feeling ...

[[He...]]

Coop and Nova,

The "very chemically toxic feeling" was something I felt often in months 17-19.  I felt almost like I had poison burning through my veins.  I would also have the shakes and freezing cold that came in waves.  It has since went away.

Love to you both! You are SO close to being done with all of this!

[[Mi...]]

Hi all...I had a good night. I went over a friends house to watch the boxing match.  I haven't seen most of them for two years. They all said I looked and sounded really good.  It was nice to go to a party w screaming kids and other chaos and not have many symptoms.  No head stuff just minor anxiety.  I remember the last time I was there my brain was frying.  It just felt good to be almost normal. 

I also did cbt to help alleviate my fear of that crazy head pain.  It really helped and allowed me to put the ER visit a little further behind me.

 

One of my friends is a nurse in a facility for elders w dementia.  She is nauseated by how they just give benzos and AD's out to all of them basically upon admittance.  She is looking to get out of that and be more of a holistic nurse to fight the machine.

 

That is so awesome to hear!!!  High five!!! 

 

I love reading posts about social adventures.  The more of them that get posted the better.  I try to get out there and do normal things as much as I can, it's good for us to hear about others pushing themselves into those situations.  Really happy for you Drew!  What is your age if you don't mind me asking?  37 here.  (and so eager to get back to hanging with the guys)

[[Co...]]

Nova,..yep its torture.  I feel like I am dying half the time. Debilitating actually. I am finding some success by constantly reminding myself that it is indeed w/d, I have had it all before ( except for the wild shaking and trembling)  yada yada yada....It has been 8 weeks since my last really decent window....onward we go. ...I will say that my sleep has improved and I am very very glad that I did not reinstate.. Although today I did take 12 mg of drammamine for nasea so I could eat. 

......I got a break this afternoon ...shaking stopped, ate some decent food, enjoyed the last half of my birthday shopping afternoon with my grandson.I felt miserable and then we went to eat and it just kind of let go a little bit...

....How did the rest of your day go?.  .Even a small break gave me a little second wind.  Wishing you a better evening Nova.  coop. 

[[Co...]]

HH...♡....what a treat to hear from you. Thank you Thank you...your words of encouragement are like words from heaven to the hopeless. ..It is a huge reassurance to read that you had this anxiety from hell and incessant shaking and trembling...

.....How are you doing?...Send us notes from the other side...we want to remember life without sx..

......thank you so much HH and love to you .....coop

[[Co...]]

Drew, glad you are feeling better and shaking off some of trauma from the er visit.. Like your CBT, I am finding some small success with belly breathing,  Beulah gave me some really good tips on how to engage it. It impacts the vagus nerve and helps disable a panic .  I think it really does help .I have practiced it a lot now and it feels natural for stress.

    It's working for you Drew.  You are sounding good.  coop

[[He...]]

Hi everyone!

Just checking in at 22 months, 3 days.  I conquered a big fear this weekend by drinking some beer!  It was the first alcohol I have had since I was about 3 months off.  My husband and I stayed at a mountain resort on Friday night and I decided to just go ahead and order a beer with my dinner.  I had a wonderful Nut Brown ale and it was SO good.  In fact, it was so good that I ordered a second.  I probably could have done without the second, but it felt so normal to order a beer with my dinner.  I am a huge fan of microbrews and, while I don't drink much else, I do love beer.  I ended up having another beer last night with my dinner, so I had a total of 3 this weekend.  I feel a bit inflamed today, which I haven't felt for a while, so I think it may be an effect from the alcohol.  It was worth it though! Just that wonderful sense of normalcy of ordering a good beer when out to a nice meal!  I'm not afraid anymore.  

I also conquered another w/d fear by going for a 2-hour long hike by myself along a mountain bike path.  Earlier this would have been impossible due to my out of control health fears (imagining that I would die of a heart attack away from any help), but I enjoyed every minute of it!  

 

Here is an update of some of my worst symptoms:

*Anxiety - I really don't have this anymore.  I can feel nervous without it flaring into panic. My weekends are relaxed and peaceful, rather than the anxiety-filled messes they used to be. Even my mornings are fine!  Weekends and mornings used to be my absolute worst times for anxiety.

*Health Anxiety - This has significantly went away, also.  I can feel weird sensations in my body without immediately thinking it's a heart attack or something equally sinister.

*Insomnia - I don't have this at all.  I sleep fine and can take naps. 

*Waking up with cortisol rushes - completely gone

*Depression - Gone

*Nerve pain/Toxic feelings - Almost completely gone.  I do feel somewhat inflamed today, as previously noted, but it's not bad and it's not causing other symptoms.

*Increase in symptoms due to menstrual cycle - This seems to have stopped also.  My last 3 periods have been normal.

 

I haven't done anything different that has led to this healing, it just happened.  It happened right after that brutal wave I was clobbered with between 17 - 19 months off. 

 

Love to you all!  Keep moving forward.  I think that it all is normal and it all GOES AWAY: the health anxiety, the panic, the depression, the body aches, the sleep problems...all of it.  Your body IS healing. 

 

HH 

 

 

 

 

[[Co...]]

Thank you HH...you have no idea the hope you have sprinkled over us.. I am so happy for your healing. ...Enjoy that beer girlie...I am just waiting for the day I feel goid enough to have a glass of Chianti and calm spaghetti..

.... It is especially heartening to me to see that your anxiety and health fears are gone. I still don't know how you and Peace taught all the way through . I remember you posting that you went to school every day hoping that you would not have a stroke or heart attack in front of a classroom of 4th graders....yet you went every day.  And I remember your fear when your husband had to be away.  Look at you now.  Healed. .. I am bookmarking the posts you sent today .. What a help you are.  Thank you...coop

[[He...]]

HH...♡....what a treat to hear from you. Thank you Thank you...your words of encouragement are like words from heaven to the hopeless. ..It is a huge reassurance to read that you had this anxiety from hell and incessant shaking and trembling...

.....How are you doing?...Send us notes from the other side...we want to remember life without sx..

......thank you so much HH and love to you .....coop

 

Oh my goodness, Coop, did I EVER have the shaking and trembling.  It was the strangest thing and I would shake like I was cold.  Often time I WAS cold.  I had it intermittently earlier in w/d, but I definitely got hit with it again in the late stages, long after I thought it was gone. 

 

I am doing really good.  I still have little twinges that make me think "oh, that is w/d" but they are really nothing of substance.  I feel happy, content, peaceful, and NORMAL.  I can even feel sad and nervous in normal ways.  Having a few beers this weekend was a BIG deal to me because I was afraid of it before!  It didn't cause a panic attack or a crushing wave, like I was so afraid that it would.  Good stuff! 

 

I know you are getting slammed lately.  My heart hurts for you and everyone else who is in "the soup", but I know, without a doubt, that you WILL get through this.  You WILL get to this Normal Place.  It's very comfortable here and I'm holding a spot for you all!   

[[He...]]

Coop,

My anxiety used to be so bad that I would literally gag when I brushed my teeth in the morning.    I was miserable with it.  I would shake.  It would overtake my thoughts.  Any thought of plans, especially something unexpected, would make me panic.  This weekend was a surprise get away with my husband and I didn't feel ANY anxiety!

 

 

[[Mi...]]

HHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!

 

That's' what I'm talkin' about!!!!  Yeah baby!! 

 

Cannot get enough of your updates.  That's 3 positive updates from people on the board today.  Love it!!! 

 

Man o' man the last 3 days have been so rough but I keep pushing.  These intense bouts of dizziness have been so unfamiliar and uncomfortable.  A powerful new side effect 19 months out is scary and hard to handle for me.  I try to be tough as nails but this dizzy shit is for the birds.  Feeling like you're falling for a second, then a head rush feeling for a second, then a puke type feeling for a second??  F-THAT!!!  Seriously!!!!  F-THAT!!!!  DIE WITHDRAWAL!!!!

 

Suddenly having a good hour right now so decided to hop on and look for more positive vibes.  I found them, thank you! 

 

Wishing us a great day tomorrow, especially you COOP. 

[[Mi...]]

Holy crap, the lurker finally reached 100 posts after 19 months, hahahaha.

[[Co...]]

Mike, it has to be all w/d.. my dizziness is the same except for a sense of falling I get an immediate sinking sensation and the head rush with a wave of nausea. I got a break this afternoon .  It is a hideous feeling. It was actually your post about taking your son for that bike ride that made me dig down deep and deeper for the determination to show up today for my date with my little grandson for his birthday shopping trip. It wasn't easy...I am sure that if it had been for anything except my grandson's birthday date I would have backed out. I am so glad that I didnt.  Your post helped me so much. 

.  .The posts today from those on the healing side have breathed hope back into me too.  We are on our way dear friend.  coop

[[He...]]

Holy crap, the lurker finally reached 100 posts after 19 months, hahahaha.

 

:laugh: I always felt surprised when people say they had been following this thread!  I think I used to think of this thread as more private than it is....like no one other than those of us who posted regularly would be much interested in it.