12-18 month support

[[So...]]

SkyHD, thanks for validating me and letting me see I'm not the only person having these memories.  We all so much need to be validated. 

[[Gr...]]

Happy holidays to all.  I'm making a Passover ham today

 

Nova-usual thoughts of healing towards you.

 

Happy me-you are doing great

 

I just updated my blog and I'm posting here. A nugget might help someone or not

 

  I'm absolutely convinced we will get better.  Several people on a thread I hang around on are anywhere from 6-12 months ahead of me and several have written a success story this month. They were just as fucked up as I was  I'm actually looking forward to life again when I envision being healed.  Remember...this will suck on and off for two years.  Drop all expectations and just surrender to the process. Pass the time. I have been continuing to practice that along with not fighting my symptoms.  This is the first time I feel I'm truly surrendering to the process and amazingly it has taken a huge amount of pressure I have put on myself.  Now, I don't feel bad or guilty if I just lay in bed one day or JUST work one day and do nothing more.  When I get that crushing fatigue I just rest.  No pushing through unless I have to.  I highly recommend baylissa's book. It has helped me more than anything at this point(except BB).

 

My wave officially ended a few days ago after six weeks.  The morning chemical rushes with all the fun side effects are gone.  Now that I survuved that I know EVERYTHING is withdrawal.  I mean I knew it but that was the longest wave isince my acute so doubts came back. No crazy ass thoughts, perpetual anxiety, and much less headaches. My last migraine was ten days ago which is good for me. Not in a window more of a wandow but  thats fine. Hopefully I'll be able to get to one year with no wave but I have no control except for how I choose to react to my symptoms. That is all.

 

Drew, your blog post, you sound really, really good.  that's the acceptance we need to get through this.  as you said, it's two years, we have to make the best of it.

[[Gr...]]

Hi everyone!I have a question,where does all this fatigue come from?Its just awful some days,I feel like I could drop in my tracks.Im usually very woozy along with it.I thought that at almost a year that would be mostly gone,but no such luck.Sounds like you guys are battling the same.I wish I understood why... :'(

 

2200, my question precisely.  I wish I knew the answer.  I suspect it has something to do with the extreme cortisol revving we get?  My fatigue seems to follow wave cycles of revving.  But I really don't know.  I do know when I had extreme fatigue last year, it resolved, went away, and I had more energy.  Now in year two, I have the fatigue again, and hopefully it will resolve quickly.  The success stories all say it goes away, along with the cog fog and DR.  feel better.

[[Gr...]]

Coop-We all need reminders.  I have to remind myself several times a day. 

 

I'm going to start cooking it soon.  I did make a kick ass Chix salad from scratch earlier and tonight it will be maple bourbon glazed ham w jalepano/cilantro mashed sweet potatoes.

My day as meh...heavy dr.  Took it easy. My cooking/meditating/ walk/bath etc...really practicing that what I'm feeling is normal so just go w it and it will change soon enough.  The cbt also seems to be helping as I'm not responding to a new random arm pain and rapid hr.  Just symptoms on my road to recovery.

 

That sounds absolutely delicious

[[Gr...]]

Drew, I also notice better improvement and ability to tolerate sx when I practice generous self care. Like your's and Nova's cooking, my constant puttering and housework ( I really like housework...it's repetitive and kind of mind soothing) helps me separate and/or tolerate sx

....my goodness your ham and sweet potatoes sound delicious....btw.  I am still getting d/r too...it comes and goes throughout the day

....enjoy.....coop

 

Coop and Drew, two good posts.  Acceptance.  And, Coop, self care.  when symptoms are bad, do whatever we need to do to feel better, or just take good care of ourselves until we do.  a couple of hours on the couch, no guilt.

 

Coop, funny thing, I like housework, too, but this house is too overwhelming for me.  maybe it's too big?  I don't know.  I'll stick with cooking, light housekeeping, daily walks, and theater, lol.  I do major housework in segments.  Toilet and basin one day.  shower and floor the next.  etc.

[[Gr...]]

Hi Folks ... got a few hours sleep finally ... that sure helps ... getting into one of my deep physical cycles is still hard on me ... and for me the only way is to endure and let some time pass ...

 

Thanks for your encouragement ...

 

Nova, what's a physical cycle for you?

[[Gr...]]

Nova, if you didn't cook ..it was definitely not a good day for you....this has bend a long wave for some of us.

.....My grandsons came this morning after church and we had croissants and ham and fruit salad and baskets with lots of chocolate. ...My d/r was not deep so I felt connected ..anxiety tried to mess things up for me, but I enjoyed my family ...even if it was through some fog. ....I was tired and anxious when they left ....but I am so glad they were here.

.....have a good night Nova....coop

 

Coop, that sounds absolutely lovely.  No, we can't let withdrawal steal time when the grandkids are kids.  That's time we can't get back.  They will never be this young again. 

[[dr...]]

Hi green...my ham came out absolutely delicious! 

 

 

I had a bit of morning rev and terrible nightmares last night which led to jaw clenching which led to tension headache... Well you get the picture     With my physical symptoms I had no anxiety though.  As we all know we can all deal without the anxiety. I so hate that morning crap but at least it lifts for me pretty quick.

 

Off to eat leftovers and watch sports.  Take care all

[[Co...]]

Hi Greenie...it is always such a comfort to see you here...how is the fatigue? . 

. .You are overwhelmed with housework.  I am overwhelmed with cooking. I was never any good at it...dismal as a matter of fact. My ex did all the cooking..I did all the laundry and housework. 

    I am sending you love and a million wishes for total healing g by tomorrow..  coop

[[Co...]]

Drew, you are sounding so good...thanks for posting to us...it gives us so much hope...enjoy the leftovers.  Love left overs.. coop..

[[Co...]]

Sky...so glad that your Little Easter was good in spite of rain . Sky, there is such a change in the tone and quantity of your posts. You are sounding better .. you are getting there Sky.

.  Wishing you a restful night and an effortless mind day tomorrow....coop

[[Co...]]

MommyR.  Boy, you have come a long long way...an in spite of your house stress you are sounding good. Prayer sent.

  Take care,of yourself first....an entire week on your own with kids over spring break would stress anyone regardless of w/d. Put the kids in the garage...jk...

...Are you stocked with chocolate and Netflix for after the kids go to bed?  ..Keep us posted....coop

[[Gr...]]

Hi Greenie...it is always such a comfort to see you here...how is the fatigue? . 

. .You are overwhelmed with housework.  I am overwhelmed with cooking. I was never any good at it...dismal as a matter of fact. My ex did all the cooking..I did all the laundry and housework. 

    I am sending you love and a million wishes for total healing g by tomorrow..  coop

 

I was never much of a cook.  My work schedule was too crazy.  and my kids were bad eaters.  so we all lived on chicken nuggets and mac n cheese for years.  Now it's my hidden talent, lol.  I loved housework before.  maybe b/c I have my sons to clean up after, it doesn't stay clean, so I don't like doing it?  who knows.

 

day at a time.  the weather is warming up here.  I have high hopes for spring.

Hope tomorrow is a good day for you, for all of us.

[[No...]]

Green ... "deep physical cycles" ... for years the same pattern of physical phenomena occurs, with variations on a theme from time to time ...

 

The cycle initiates below my belly ... some folks would say in the dantien ... whenever or not that is accurate I do not know ... haven't connected with anyone that could verify that for me ...

 

Sometimes it feels like a slow blooming upwards ... sometimes it is the sensation of a "rush" ... and sometimes in between the two ...

 

My digestive system is engaged ... gas, bloating, rumbling guts ... lots of belly orchestral noise ... then it blooms outwards across my chest and arms ...

 

Simultaneously it moves up my back, somewhat along the spine ...

 

Then the two "streams" meet around my neck and move to engage my head, ears, and sinus ...

 

Then the vibrations start ... and somewhere during this blooming the panic/anxiety turns on ... at which time my breathing gets engaged ...

 

Sometimes the boatiness shows up ... and sometimes the dp/dr ...

 

Yes, this is a "classic" panic protocol ... and for years I could set my watch by its duration ... 52 minutes ...

 

For about a year before I started the taper ... this "duration" morphed into hours, days, and sometimes weeks ... and that has stayed the same ever since ...

 

The last two "events" did not contain the sensation of panic ... and there has been no "fear" present" ... perhaps a shift or change ... I do not know ...

[[No...]]

Good Morning ... slept off and on for maybe 10 hours ... woke up "feeling" refreshed ... took a while to get the knots out and get the edema in my legs moving ...

 

All in all mostly okay ...

 

Except for the freaking snow ... another 3 or 4 inches of wet stuff ... and it is still snowing ... the temperature is mild ... looks like a Christmas postcard ...

 

Oh well ... it is what it is ...

 

Hope we all have a good day ... 

[[Co...]]

Well Nova, that panic without the panic does not sound like a way to start the day.. .thank goodness it doesn't have the panic component . ...I am sorry you have been living with all that since prior to taper.

....I hope you are free of it today... We had great big fluffy snowflakes yesterday too...it didn't even stay on the ground . I can't believe you got 3 more inches. ...it can't last mu h longer.....What are you cooking today?...I am roasting a chicken with potatoes and onions...one of 3 things I know how to cook...Nova, I am wishing you a happy day.  coop

[[No...]]

Coop ... made loaf of bread ... pork roast and potatoes and carrots for dinner ...

 

And it is still freakin' snowing ...  :tickedoff:

 

Hope you got some rest ...

 

I do not know where the panic stuff has gone ... the fear/panic has not been around since that Monday a couple of weeks ago ... maybe it finally got burnt out ... who knows ...

[[Co...]]

Nova,...yum...wish I could get the hang of homemade yeast bread.  Mine is always a big misshapen mess. ..So happy to hear that your panic burned away.  Mine had been gone for a few months too until this wave . ...but this morning.. not even mild cortisol spikes.  So far no anxiety d/r or dizziness.  I am pretty sure it will get me later in the morning. The dog wanted out very early this morning so I am just having my decaf in bed and watching some of the early news.  A moment of peace and almost normalcy...I will take it

.  coop

[[No...]]

Coop ... a moment of peace and almost normalcy ... that's all we really need ...

 

My cooking repertoire is small ... and that is probably good ... mostly old fashioned, traditional things ... simple things ...

 

Except for the outhouse in winter, I often get lost in thoughts of living with a small piece of land ... slowing everything down to the speed of a pea plant growing ... maybe next time around ...

[[Sk...]]

Nova, Coop, glad to hear at least somebody is getting a  break here today.

 

I am in a bad wave, my heart is pounding so badly.  My mom has a heart condition, she cannot know that when in a wave my heart acts up so badly, it would make her worry for nothing, so I have to pretend that things are better than they are. Sometimes that is a good thing, but today it's a little beyond me.

 

I have some lessons now, speak to you guys later, although I am not much company  today.

 

Take care.

[[No...]]

Sky ... you are always good company ... wavey or not ... see you later ... be well ... 

[[Gr...]]

Green ... "deep physical cycles" ... for years the same pattern of physical phenomena occurs, with variations on a theme from time to time ...

 

The cycle initiates below my belly ... some folks would say in the dantien ... whenever or not that is accurate I do not know ... haven't connected with anyone that could verify that for me ...

 

Sometimes it feels like a slow blooming upwards ... sometimes it is the sensation of a "rush" ... and sometimes in between the two ...

 

My digestive system is engaged ... gas, bloating, rumbling guts ... lots of belly orchestral noise ... then it blooms outwards across my chest and arms ...

 

Simultaneously it moves up my back, somewhat along the spine ...

 

Then the two "streams" meet around my neck and move to engage my head, ears, and sinus ...

 

Then the vibrations start ... and somewhere during this blooming the panic/anxiety turns on ... at which time my breathing gets engaged ...

 

Sometimes the boatiness shows up ... and sometimes the dp/dr ...

 

Yes, this is a "classic" panic protocol ... and for years I could set my watch by its duration ... 52 minutes ...

 

For about a year before I started the taper ... this "duration" morphed into hours, days, and sometimes weeks ... and that has stayed the same ever since ...

 

The last two "events" did not contain the sensation of panic ... and there has been no "fear" present" ... perhaps a shift or change ... I do not know ...

 

M, that's classic withdrawal, yes?  I don't get that exactly, and all together, like you, but I've gotten each symptom there in varying intensity.

 

I just finished Baylissa's book last night.  It was so hopeful.  Her waves were fairly intense at the end, such as we're all experiencing (you, me, Coop, Sky, Drew!)  She wrote that those last waves before healing were shockingly intense, and she had about given up on healing anytime soon, and then she said her last horrible wave was actually her last.  And she knew she was getting better, in spite of that, by her returning mental clarity.  I totally relate.  Does it make it any easier, the terrible waves as so much time goes on?  Yes, it alleviates the fear factor, which returns with every wave.

 

She also said after this is over we'd feel invincible, that not too much in life would faze us, and we would be grateful to be alive.

 

Hopefully today is a better day for you, for all of us.

[[Gr...]]

Coop ... made loaf of bread ... pork roast and potatoes and carrots for dinner ...

 

And it is still freakin' snowing ...  :tickedoff:

 

Hope you got some rest ...

 

I do not know where the panic stuff has gone ... the fear/panic has not been around since that Monday a couple of weeks ago ... maybe it finally got burnt out ... who knows ...

 

Nova, do you get the fatigue after the panic leaves?

[[Gr...]]

Nova, Coop, glad to hear at least somebody is getting a  break here today.

 

I am in a bad wave, my heart is pounding so badly.  My mom has a heart condition, she cannot know that when in a wave my heart acts up so badly, it would make her worry for nothing, so I have to pretend that things are better than they are. Sometimes that is a good thing, but today it's a little beyond me.

 

I have some lessons now, speak to you guys later, although I am not much company  today.

 

Take care.

 

Feel better, Sky.  Hoping this passes soon.

[[Gr...]]

Well, buddies, that long awful wave, it feels like I'm just coming out of the aftermath.  the waves are so shocking to the whole system, mind and body, it takes time to adjust.  I think I'm coming out of it because I don't have the soul crushing exhaustion and lack of interest in living.  so that's good

 

As I said to Nova, I finished Baylissa's book, and the end was so, so hopeful.  however, however, she did get bad waves right until the end, her last one.  her last terrible, terrible wave was in Nov. 2007, and by the end of December she was ready to write a success story.  It's that fast.  She still had residual symptoms, but she knew it was over in Dec. '07.  And all of the residuals faded over time.

 

This kind of makes sense, HH, all of us. crazy bad waves so far out, and we all lose hope, become fearful, or just resigned to the fact we may be like this forever.  that's the feeling, that's the fear.  but it really does end.

 

It's cold here again. but not snowing.  I'm so sorry you're still getting snow Nova!  April 7.  It will be warm soon.  And hopefully we'll all get some breaks, that we so desperately need to get through this.  I'm so grateful to have all of you in my life.