18 - 30 Month Plus Group

[[...]]

Hi Buddies,

 

Drew, I’m pleased you had your appointment, and it sounds so helpful for you. I’ve never been a headache sufferer but I’ve really suffered with them recently.

 

Well I’m continuing with this bitch of a wave. I felt better yesterday at this time and had an effortless mind evening. Watched Downton Abbey (oh my) and felt normal and happy. Went to bed, slept rubbish and got up with nerve pain and internal vibes. Got through the day and all the what ifs have now started……. You know, what if this could possibly be something else ie hormones. HRT has been in the news here and I glimpsed at it and read the symptoms of peri and meno (sorry boys).  Of course my mind is all over now, so all my symptoms have peaked again. 

 

[[be...]]

Hi all,

 

I've been reading your posts but really haven't felt like posting myself. Nothing new here..same ole..same ole. Still struggling with the waves and good days bad days. Sometimes it feels like my healing has come to a standstill. I get discouraged because I have so much I want and need to do.

I'm not counting the months off anymore but I did think I would be further along at almost 27 months.

On a good note..I was reading my journal last night and this time last year I was still drinking smoothies with a lot of panic and anxiety. So things have changed in that department for the better.

I know all of you are as tired and worn out as I am...but as Nova says..It is what it is...till it ain't.

 

The temps are getting cool here..into the 30's at night...good sleeping weather..and I have been sleeping better...of course it comes and goes just like everything else.

 

My sugar cravings are full speed ahead...sometimes I cave in but mostly it's just jam on toast.

I am indulging in some pumpkin goodies here and there.

The nerve and muscle pain are still with me and I know it will be the last symptom to leave because it has been the worst all along.

Still get some GI upset from time to time...not to bad...except when the nausea lasts all day.

Most of my health fear is gone..except when in an acute wave it rears its ugly head.

 

I had a good belly laugh the other day and pulled a muscle around one one of my ribs..it hurts. They say laughter is good for the soul...I agree..to an extent...but with broken down muscles..one has to be careful.

 

I have gained six more pounds and that tells me my nervous system has calmed enough to hold weight. I never thought I would want to put on weight...but I also went thru this in my first..the weight came on faster though.

 

So, all in all..I am getting there...just running low on patience.

You all are always in my thoughts and I am still reading your posts and rooting for you every step of the way.

Nova, I'm giving you a shout out...you are doing such a good job at mentoring and holding us all together.

Coop, so glad you are feeling better. I agree, the waves may keep on for a while longer but we know they will some day be gone.

All of you here have touched my heart with encouragement for one another.

 

May you all have the best day you can. I'm off to make a meatloaf and mashed potatoes.

 

 

[[dr...]]

it seems we are in the ho hum doldrums of groundhog days again for many of us.  My stress response went haywire at the Dr.s office yesterday and it hasn't recovered.  I got home and had a run of the mill argument with my fiance but as we all know everything has consequences in benzoland.  It got my brain going and I slept even worse than usual (which I didn't think possible).  Then today I had an off site meeting with a client that lasted over an hour.  My brain was wonky and my anxiety was high.  I had no head pain or panics through all of this which is the positive I will pull from this shit today.  Just very weird in the head, tired, boaty, and yucky.  Off to try and nap...

[[mr...]]

I am experiencing some of the same stuff also, a bit of a "wave" or whatever you want to call it...some anxiety, panic, fear, hopelessness, and generally not feeling like "me" and like it won't end...but we all know what this is, and we all know the outcome   I am SO happy to see complete healing this year!  This time next year, I predict we will all have written our success stories...

 

Mrs.

[[Te...]]

Was a long day today.....my head feels full or heavy...idk for sure how to describe the head pain...tightness in the back of neck....my left foot feels Luke I put a phone inside it on vibrate...

Oh does anyone have like circulation problems....this my sound weird .....but I use to be ate my sleeper but tucking my arms under me makes my arms and hands feel tingly or pins and needle feeling...them a few twitches ....got my little brain...fricking out....was stuck on terrible neuro des eases all night...so little sleep....burning mouth and throat all day.....so hate all of this....

 

Drew.....sounds like you had a great dr visit.....hope you have a better evening.....

 

Nova....healing hugs...hope your cold is better...

 

Hi....Coop......and everyone else..

 

Marg....do your vibes....feel like a cell phone on vibrate?

 

Hugs! TM

[[dr...]]

Right after I posted the above I had an unexpected conference call before I could retreat to recharge my brain. My brain weirdness continued to ramp.  I leftf the conference call a bit early and meditated.  it got scary for me as it wasn't panic just a feeling of pressure/can't process on the brain.  I am now going to jump in the bath and hope a long soak makes it better.  I forgot how bad this stimulative anxiety can be.  ugh

[[...]]

Oh what a set of loopy troupers we are.

 

Drew, sorry you had an argument with your better half, it's bound to happen at the best of times. I know how hard it is when we have a little conflict, it's so exaggerated in our frazzled brains. I too had a little heated conflab with my daughter and I managed to hold it together without having a total meltdown. Still sizzled my brain for a bit, but I'm not crying on my bed like a 3 year old...... improvement.

 

Nice to read your update Beulah and I really understand your words. You've done so brilliantly putting up with this and you can do that last bit. We are getting better even when we feel stuck. It feels good when we can laugh so good for you. I can't wait to laugh like I used to.  Sugar cravings are evil  I have a massive sweet tooth, however I just cannot have it, it gives me benzo flu and the rest.

 

Oh Mrs, I don't like to hear you suffer and suffering you must be for you to say so. You are such a kind brave soul. Your bright and positive outlook will take you through this. I think we wonder if it will ever end because of the horrible backwards and forwards nature of this 'thing'. I have felt crappy for so long, with very short occasional breaks and every time I do, it tricks me 

 

TM, yep, you have described everything and yes I often feel like I have bad circulation in my arms and all the blood is just wooshing round my head. I felt like I had swallowed a phone this morning before I got up......... crazy we will get there

 

Welcome littleman, you will be comforted here 

 

 

 

[[...]]

Nova, feel better soon. I'm sure you would take the chesty cold over the other rubbish every time   

[[dr...]]

I guess my feeling good is ending.  I even got health anxiety in bath that my brain isn't right.  Well the symptoms only got worse as my stressful situations did. I was feeling so well and feeling like that part of it passed.  Well..,I've been kicked to the curb like we all have been time and time again.

[[Se...]]

Looks like many of us are passing through the wringer again.

 

I had a health-care professional recently ask me about the Ashton manual, so I provided the link, as well as some other reputable links.  I happened to flip through the Manual myself, out of casual curiosity.  Is it just me, or does it seem Ashton kinda downplays the symptoms, or at least the duration of them?  It seemed pretty "lite" to me, compared to what I am going through and what I am seeing here, just in this thread.

 

I've lost all motivation.  My lips are numb and muscles around eyes feel weird.  Eyelids "sticky".  Gee... I remember this stuff happening during acute, then it left for many months.  Thought it was over for good.  I'm really curious as to why the "replay" of symptoms that have gone, only to return... fine-tuning happening?  Who knows.   

[[dr...]]

I was thinking the same thing regarding Ashton.  I think some of he information and videos at cepuk.org are much more realistic of what we go through time and symptom wise.  She makes the panic and cortisol rushes seem so ho hum.

[[pe...]]

Today I'm really aware that I can survive this, which is different from knowing I'll heal completely. I'm still not sure of the later but I'm sure that I can do this, whatever it is. Endure. The things that have helped so far: my children pulling me back into their world whenever I try to retreat, my husband cooking whole nourishing food, setting up a bedroom of my own so sleep is protected from snoring husband and noisy dog (I do miss cuddling though) and words. These words have helped:

 

"You have enough grace for today."  -mrs

 

"No one gets left behind." - Green

 

"You must bear this." - best friend in a letter

 

"We get sick, we get better. It's what people like us do." - friend

 

Also- all the things Nova writes and it doesn't hurt to be called a Mighty Girl by Coop.

 

I wonder what words have helped you through. Because we/you've all come a long way.

 

Peace2

 

 

 

 

 

 

[[dr...]]

Hi all...I cut and pasted this post I just read from Northofhere.  I find comfort in it right now

 

 

It might not seem like it now, and when I was where you are, I was mostly full of doubt, I'd ask for evidence that we would heal, but really did not believe it would happen to me. At 22 months I was still having many of the symptoms you all have described. Things would start to improve and I would think "yes, ok, this is finally coming to a close, and then wham!" Right back to what felt like square one. I would start to do things like work out again and then the next day wake up feeling like I'd be lucky to get down the stairs. at two years off I remember walking around the block and having the whole vertigo-boaty-drunken sailor thing come back out of nowhere when I thought I had made it through that particular hell.So- I get where you are coming from.

I am at 3 yrs now. maybe all along it was getting better and I just didn't realize it- but I can tell you that even tho I didn't believe it would happen- healing found me. I am okay again. You say people have these left over symptoms still and don't fully heal. Well- I know my CNS is still a bit sensitive- but things are pretty damn near 100% and I just wanted to let you know it happens. Read my million posts and you will see the hell of my journey through this.

Then know that I made it through. And you most likely will too. Even if, like me, you doubt it every step of the way. Healing is not prejudiced against the non-believers. Thankfully

north

[[Si...]]

Wow dangit drew, sorry you are getting smacked around so hard. I'm still feeling pretty terrible since this wave hit two weeks ago. My head pressure and burning spine just keep churning away. Having to work on a 16 page brochure at work for a new product. There's that and a large job for an Air Force base. Fun trying to concentrate when my head feels like it's going to explode. Hope you can reach a calm place soon. Thanks for posting the clip from NoH.

 

HH glad your feeling a little better.

 

Serenity the same thing happened to me. I felt fine for 5 months.

 

Hang in there Marj. Tomorrow will be midweek.

 

Anyway I've been trying to take a little break from the forum. Sometimes it gets me worked up when I read too much.

[[dr...]]

Sig...it's not that I am in the wave of all waves...it's just that damn stress response or lack there of which is so hard for me to deal with.  Many other things have not come back.  It seems to just be the stress that sends me over the edge now.  No chemical anxiety that just keeps on coming.  Trying to stay positive.  Making grass fed aged rib eye, rosemary sweet potato fries, and I am going to have a 1/2 glass of wine to try and re frame my thought process.  Good luck on your stuff for work!

[[Si...]]

Sig...it's not that I am in the wave of all waves...it's just that damn stress response or lack there of which is so hard for me to deal with.  Many other things have not come back.  It seems to just be the stress that sends me over the edge now.  No chemical anxiety that just keeps on coming.  Trying to stay positive.  Making grass fed aged rib eye, rosemary sweet potato fries, and I am going to have a 1/2 glass of wine to try and re frame my thought process.  Good luck on your stuff for work!

 

Enjoy your dinner. Glad you aren't in a full blown wave. Enjoy the wine. I've only had two beers in 7 months. No fun.

[[Ko...]]

Looks like many of us are passing through the wringer again.

 

I had a health-care professional recently ask me about the Ashton manual, so I provided the link, as well as some other reputable links.  I happened to flip through the Manual myself, out of casual curiosity.  Is it just me, or does it seem Ashton kinda downplays the symptoms, or at least the duration of them?  It seemed pretty "lite" to me, compared to what I am going through and what I am seeing here, just in this thread.

 

I've lost all motivation.  My lips are numb and muscles around eyes feel weird.  Eyelids "sticky".  Gee... I remember this stuff happening during acute, then it left for many months.  Thought it was over for good.  I'm really curious as to why the "replay" of symptoms that have gone, only to return... fine-tuning happening?  Who knows. 

 

I totally agree with your assessment of the Ashton Manual. I read the manual and followed from the beginning. I thought I might be sick for 6 months Max.  When I finished my taper my doctor said it might take a year, which Ashton agrees. But, no where does she say this can last for two or three years or how disabling the side effects can be.  I'm thinking that if we were told the worst that maybe we wouldn't even attempt to quit. Anyway, I'm glad I wasn't the only only one who thought it.

 

Hope we both get better soon.

 

Korbe

[[Ko...]]

Hi all...I cut and pasted this post I just read from Northofhere.  I find comfort in it right now

 

 

It might not seem like it now, and when I was where you are, I was mostly full of doubt, I'd ask for evidence that we would heal, but really did not believe it would happen to me. At 22 months I was still having many of the symptoms you all have described. Things would start to improve and I would think "yes, ok, this is finally coming to a close, and then wham!" Right back to what felt like square one. I would start to do things like work out again and then the next day wake up feeling like I'd be lucky to get down the stairs. at two years off I remember walking around the block and having the whole vertigo-boaty-drunken sailor thing come back out of nowhere when I thought I had made it through that particular hell.So- I get where you are coming from.

I am at 3 yrs now. maybe all along it was getting better and I just didn't realize it- but I can tell you that even tho I didn't believe it would happen- healing found me. I am okay again. You say people have these left over symptoms still and don't fully heal. Well- I know my CNS is still a bit sensitive- but things are pretty damn near 100% and I just wanted to let you know it happens. Read my million posts and you will see the hell of my journey through this.

Then know that I made it through. And you most likely will too. Even if, like me, you doubt it every step of the way. Healing is not prejudiced against the non-believers. Thankfully

north

 

 

[[Ko...]]

Hi all...I cut and pasted this post I just read from Northofhere.  I find comfort in it right now

 

 

It might not seem like it now, and when I was where you are, I was mostly full of doubt, I'd ask for evidence that we would heal, but really did not believe it would happen to me. At 22 months I was still having many of the symptoms you all have described. Things would start to improve and I would think "yes, ok, this is finally coming to a close, and then wham!" Right back to what felt like square one. I would start to do things like work out again and then the next day wake up feeling like I'd be lucky to get down the stairs. at two years off I remember walking around the block and having the whole vertigo-boaty-drunken sailor thing come back out of nowhere when I thought I had made it through that particular hell.So- I get where you are coming from.

I am at 3 yrs now. maybe all along it was getting better and I just didn't realize it- but I can tell you that even tho I didn't believe it would happen- healing found me. I am okay again. You say people have these left over symptoms still and don't fully heal. Well- I know my CNS is still a bit sensitive- but things are pretty damn near 100% and I just wanted to let you know it happens. Read my million posts and you will see the hell of my journey through this.

Then know that I made it through. And you most likely will too. Even if, like me, you doubt it every step of the way. Healing is not prejudiced against the non-believers. Thankfully

north

 

Drew,

Thanks for posting this. Reading stories like this gives me hope, of which I'm in short supply.

Korbe

[[No...]]

Good Morning Folks ... tough day yesterday and tough morning ...but hey, what's a little toughness among Buddies? ...

 

Doing day six of ten with this antibiotic ... I don't feel the antibiotic is causing any "problems" ... however the process is a struggle ... and it feels like it is going in stages, surprise, surprise ...

 

Breathing is good, lymph nodes are good ... the congestion and cough quite intense ... something is going on, hopefully it is positive ...

 

I chose to engage this stuff last week, hoping for at least a neutral result with the congestion and cough ...

 

Onward ...

[[No...]]

WORD FOR THE DAY

 

Hope is the deep orientation of the human soul that can be held at the darkest times.

 

VACLAV HAVEL

 

[[Aq...]]

Thanks for the quote Nova.  I am joining you in the soup lately.  I hope it passes for you soon!

[[...]]

Hi all...I cut and pasted this post I just read from Northofhere.  I find comfort in it right now

 

 

It might not seem like it now, and when I was where you are, I was mostly full of doubt, I'd ask for evidence that we would heal, but really did not believe it would happen to me. At 22 months I was still having many of the symptoms you all have described. Things would start to improve and I would think "yes, ok, this is finally coming to a close, and then wham!" Right back to what felt like square one. I would start to do things like work out again and then the next day wake up feeling like I'd be lucky to get down the stairs. at two years off I remember walking around the block and having the whole vertigo-boaty-drunken sailor thing come back out of nowhere when I thought I had made it through that particular hell.So- I get where you are coming from.

I am at 3 yrs now. maybe all along it was getting better and I just didn't realize it- but I can tell you that even tho I didn't believe it would happen- healing found me. I am okay again. You say people have these left over symptoms still and don't fully heal. Well- I know my CNS is still a bit sensitive- but things are pretty damn near 100% and I just wanted to let you know it happens. Read my million posts and you will see the hell of my journey through this.

Then know that I made it through. And you most likely will too. Even if, like me, you doubt it every step of the way. Healing is not prejudiced against the non-believers. Thankfully

north

 

 

 

 

Thanks for this Drew, I've read it about 6 times already today. I think I might read through Northofhere's posts.

 

 

Another bad night of no sleep and burning muscles/nerves... whatever.  It's neaarly 3pm here and an hour ago i had this sudden wave of fatigue, really heavy fatigue just come over me and I felt lead. So scary, has anyone else had this? Went for a walk and helped a bit. So sick of feeling like my spirit has been removed.

 

[[No...]]

Marj ... that fatigue stuff can be scary when it shows up like that ... and you were able to go for a walk ... it has hit me from time to time ... and sometimes I can carry on and sometimes I just need to close down for a while ...

 

It always passes ... and when it is present it can be dreadful ... 

[[No...]]

Hi Aquaval  ... speaking of soup ... made some roasted squash soup this morning that is to die for ... took me out of my misery for a while ...

 

Hang on my friend ... this does get better ... or so I keep hearing ...