12-18 month support

[[No...]]

Lately .... everything seems to happening for the first time ... I can't seem to remember that I have done this so many times before and got through it ... seems like I am starting over every day ...

 

Weird ...

[[Co...]]

Nova,yep...sounds like we have the same thing going on...zaps and contractions. Mine are not constant constant way, but as you say intermittent , surprising and kind of jokting. I just get settled and begin to put some reins on my thoughts when another zinger jolts me out of whatever distraction I am trying. Like you, this has been going on all day.

....Me too, . The teas, the hot packs, the Epsome salts hot doaks, the mindless tv.  None of it is helping much. I guess if it goes on long enough and we find ourselves still alive and not completely traumatized we will be able to learn how to ignore them. ...Carry on Nova.  Keep me posted as you want.. coop

[[je...]]

Hi guys,

Sorry your all having a tough night. The health anxiety stuff is all w/d.. I never really get it, but this last wave I was in a panic thinking I had a serious illness.. Once the wave slightly lifted all those thoughts went away and I new it was all w/d. Have you guys noticed most of the stuff we are dealing with now is weird physical sensations?  Today was off for me too. I'm not in a full blown wave, yet I'm still very uncomfortable. My head feels funny with weird sensations and my nerve pain is still present. Let's hope we all get a break tomorrow.. Hugs to all of you, jenny

[[Co...]]

Nova.. yes.  Me too exactly...new sx and feeling like I am starting over again. I was so used to my regular sx that I could coexist with them if they didn't annoy me too much. ..this head thing and raw anxiety is exactly like you said...like starting over.  Not interested in a do over dance ..the first one drug me around the dance floor my hair.

[[No...]]

Hi Jenny ... almost all of my stuff has been physical from the get go ... and perhaps I never felt anything was mental ... perhaps some denial there ...

 

And I attribute even the dp/dr as physical ...

[[No...]]

Coop ... that is perhaps what gets me down most ... this not wanting to do this all over again ... I had a good response/pattern for a very long time ... and its efficacy seems to be diminishing ... perhaps that is scary for me ...

 

A feeling of being "out there" all alone and not knowing what to do or how to respond anymore ... lost ...

[[Co...]]

Jenny, so glad you have not suffered health fear...it is the devil himself taunting us. ...Yes, usually when my sx are manageable ...and definitely in a sunbreak they go away. They are just so very convincing when I am in a wave...and new sx send me straight to health fear prison.

..Thank you for mentioning your head sensations and nerve wierdness, definitely a theme tonight. As much as we don't want our buddies to suffer in any way, knowing that others are experiencing similar sx helps so much to tame the panicky fear.

.  .You sound really grounded Jenny...so glad for you that your wave is lifting.  Hope it goes right to complete healing.  coop

[[Co...]]

Nova, you are most definitely not out there all alone. We all adore you so much here.  I won't leave this thread until all of our beginning band of survivors claims healing. I get scared thinking that every one is going to heal .  except me.  and I will be the only 'original' 6-12, 12-18  month buddie left behind.

  .I share your despair about hard won strategies , well honed over months and months are not working any more. I have no idea what to do with head squeezes. 

  ..We are tired, scared and a little hopeless. Thank god for friends on the thread. My family would not be able to begin to understand this. How could anyone possibly understand this if they have not gone through it.

    It's ok to be a little hopeless. .positivity can be a heavy thing to hold upright constantly.. Nova, you are not alone in this.. coop

[[No...]]

Thanks Coop ... more and more lately I feel I am back at the beginning ... and I know that is not true ... and I know I am not alone ... and that is just how I feel sometimes ... probably another version of the benzo lie ... very siren-esque ...

 

As some others have mentioned they are feeling mostly physical stuff now where in the past their effects were mostly mental ... perhaps I am getting my share of the mental stuff now ... this sense of constantly having to keep my head in the game ... exhausting work for me ...

 

Where my stubbornness, determination and experience got me through so much ... maybe these months of endgame just requires acceptance and patience ...

[[No...]]

Sitting here ... remembering all of our conversations about weathering and the doldrums and the revving for those many long months ... we have been through so much ...

 

Now I just feel sometimes that I am floundering ... feeling I am at the mercy of the "whatevers" ... and that is certainly not true ...

 

This is mostly exhaustion talking ...

[[Co...]]

Nova, yep.  In the first 6 months after jumping my sx were all mental. All the existential intrusive thoughts, anxiety, depression etc etc...now since month 6 it's all weird torturing physical.

    It does seem so unfair that after so many months we have to lean how to manage new sx.  I am too old for so much nonsense. I am back to thinking, " if I can just get to the next hour".. haven't seen that since acute. Lately I have been able to see 'next month' and healing at 18-24 months.  We will get through this Nova.  There is no other option.

[[No...]]

So right, Coop ... there is no other option ...

 

And I haven't had such a good wimpy whine in a long time ... in an odd sort of way it feels comforting to feel sorry for myself once in a while ... very exhausting work being a rock all the time ... letting all those waves just crash against me and not really mind too much ...

 

Maybe losing some of my rock-ness is part of this process ... who knows ...

[[Co...]]

Nova,.  I know the exhaustion. I feel that too sometimes...that, " ..whatever happens happens.  I have done everything I know how to do"...I have had times in which I thought, " fine, if I am going to die ( from whatever health fear was circling that day), just let it be and be done with it"  That is exhaustion and momentary throwing in the towel or raising the flag of surrender.. we just need to catch our breath again in a sunbreak to get a little "bounce" back. ...I am just beginning to think I might not hold up for the next sunbreak.

[[Co...]]

Me too, ...a wimpy whine.  It is good to feel sorry for ourselves when we have hit a wall.  It is a sorry sorry thing to feel not well on some level every day. Even the best warriors have to lay down the sword once in awhile ..and get a new horse.

.....yes, sometimes putting it all down and just saying, " what the hell, whatever this new sx does to me...so be it"..  that's pretty morbid and give uppy . and of course I only feel that way in moments of sheer desperation and fatigue, but sometimes after hours of anxiety it provides the distance on the relentless ' marching on'...gives us a little mental break by default...long enough to start over the next day.

....Yep, tired and beaten up holding on to used up crumpled up shredded hope.  I will tell you this, I personally know cancer patients who have not fought any harder than all of us have.  coop

[[No...]]

Coop ... I hear your exhaustion and doubt ... and frustration ...

 

And ... you will hold up until the next sunbreak ... remember, nobody gets left behind ...

 

We only need to remember "go slow" ... we don't let the beast stampede us ... that is mostly what I have been doing the past two hours ... listening to repeating music, Satie's The Gymnopedies ... I have the fireplace going on the tv ... and I have made a couple of cups of tea ... not as remedy ... just so I can feel the warmth of the cup ... smell the fragrance ... and be soothed in this moment ...

 

No matter how loudly things are swirling within physically ... no matter how exhausted we feel ... we can still "go slow" until this cycle passes ...

[[No...]]

Yep ... that's what we need ... a new horse ... 

 

Or, at least better breaks on my tricycle ... 

[[mr...]]

Fears. Panics. Health lies. Anxiety. Yup, yup, & yup. Count me in with y'all the past couple days.

 

Don't get me wrong, count me in on lots of healing going on and good times the past couple days (and weeks) too. But, yeah, the other junk has been occurring too. (Grr)

 

Mr & I are having a "plow" date currently. He works for a local bicycling & fitness store in our hometown, so he's the sales manager / maintenance crew / assistant buyer / etc etc LOL. So, here it is at 10:46pm on a Sunday night, plowing the lot of the 12+ inches we got over the past 24 hours! It was my 33rd birthday yesterday, and I had a "ladies night" over at my place in order to celebrate. Ended up with four friends that came over (during the manic snow!) and we all had a good time. The original plan was to head out and roller skate at the local skating rink and then head to grab a burger & fries together, but due to weather we decided yo just stay in at my place & chat and play games. Everyone brought a bottle of wine to pass (I brought just some plain 'ole sparking catawba, which is NA grape juice) and we made some yummy appetizers -- pineapple upsidedown cakeballs and snickerdoodle cakeballs, chips 'n salsa, spinach dip 'n crackers, and a cheesey pull-apart Buffalo bread! Yum We also played Cards Against Humanities... um wow! If you've ever played before...you'll understand Some CRAZY "adult" humor associated with that game, dang! 

 

While riding along with Mr while plowing, a song came on the radio by Laura Story. Its called "Blessings". (Here on YouTube:

) Anyways, it had me in tears. Early on in withdrawal, I angrily disliked this song, thinking like there was no way God would bring blessings through tribulations & such - He is good, therefore He wouldn't, you know? But man, tonight...hearing it again after all this time, and after all we've been through...well, wow. My heart & attitude towards it has changed almost completely. I realized, and said to Mr, through tears: "Dang, I think I dislike(d) this song so much...because its probably  so true..."

 

It does have a Christian undertone, so if you're not of that faith, I mean no disrespect by posting it. Its message about finding blessings through adversity is still a meaningful one It really touched me tonight through some of this "muck", so I thought I'd share it

 

Well, anyways gang. Back to hanging & chatting w/ Mr whilst plowing Have a restful evening, I'm thinking of you all tonight Love to you,

 

Mrs.

[[No...]]

Happy Birthday, Mrs ... I will get to watch some more parking lot plowing tomorrow evening from my window ... we are getting another stormy day on Monday ...

 

Cheers ...

[[He...]]

It's the feeling of being stuck, of not making headway, of being on that dang merry-go-round we spoke of months ago, that gets to me. It's beating me down. What worries me the most (when my health/imminent death fears aren't raging) is that I have been saying the same things for so long! I looked back at my posts from this time last year and I could have written them today. How is that possible?

If I'm being honest with myself, there are some differences, my anxiety was very bad all the time then. Also I tended to downplay how I felt when I wrote because it was too scary to express the full truth. my good days weren't as good and my bad days were much worse. But I feel like there is just too much that is still the same.

I'm not sure what that means. Its discouraging, for sure.

[[Co...]]

Nov, ...you sound like you are settling a little even if your sx are not. Are the zaps letting up at all? .. I agree.  Sometimes we just have to say, " whatever, while you are torturing me with panic and zaps , I am going to sit here with a cup of hot tea...because I am too tired to play my part of the game...do carry on. ."    Me too...the TV is on some trivia light hearted sitcom...couldn't tell you which one.. hoping tomorrow is at least a 'smile at the dog' day.  Take care Nova .  Rest if you can.  We are going to be okay...eventually. We both have months to go before we hit month 24 ...and I truly believe that we are all going to be 100% by then....all of us. 

[[No...]]

Coop and HH ... I am running out of steam ... almost 2 AM here ... I am going to try to get some sleep ... unless ... someone would like me to stick around for a while longer...

 

[[Co...]]

HH, I think we say the same things over and over because we have discovered and borrowed from our friends the mantras that over time get us through...like ritual prayers and saying the Rosary.  They give us comfort and bolster our belief and courage. We get tired of them and resist them when they fail to be comforting. . And then return to them because they are the best we've got. .. I am tired of all of mine too right now. I not only feel stuck.  I feel outrageously set back ...through no fault of my own.  after playing by all the rules....I don't want to keep my feet going on this path...I want to sit down . in the sun. I don't want to be brave and I don't want to be positive. I want to wrap up in my selfish sadness and be angry when I am done being not brave and sad...lol

  ..It just pisses me off to no end that I would get a new...scary sx at month 15.. I know that I will eventually deal with it...it hasn't killed me yet...guess that's the first clue that I will have to deal with it.  First I am going to be sad...and mad

  Well, we certainly all are owed a decent day tomorrow. We are with you HH.  We will all compose some new mantras and touchstones for the last few months of this...maybe some sad and mad ones...coop

[[Co...]]

Mrs, I don't know how you do it.. how do you do it.  work. plowing, girls night with whipping up snacks.. in the midst of fear and sx... my hat is off to you sista!.. Sorry the snow dumped on you. We haven't had more than a few inches all winter...unusual for us.. well enjoy it!

...thank you for the link...and your post...you are definitely holding up to this...love to you Mrs.....coop

[[No...]]

Coop ... how are you doing now? ... I think I need to try to get some rest ... almost 2 AM here ...

[[Co...]]

Nova, I am good .  I am not dead yet..that's helping my anxiety...lol ..I thought I sent you a ' goodnight ' post...I am getting foggy.  .thank you so much for keeping me company.  Helped immensly...Wishing you peaceful rest and a better tomorrow.  Love to you Nova.    coop