12-18 month support

[[Co...]]

Hi Green, ...I think you should never go back to work.  jk...With everything we have been through the entire rest of our lives should be all about doing things that are fun and comforting .

....How are you doing? I am still holding on to a decent baseline and today had some very nice sunbreaks...my d/r is lighter and my anxiety is still mostly quiet.. ..waiting for the other shoe to drop.  We are 16 months out.  2 months away from month 18.  I never in a million years thought I would still be doing this ...still with sx at 18 months.  but here I am ...coop

[[Co...]]

Goodnight Nova my friend.  Wishing you some peace.

[[No...]]

Goodnight Coop ... thanks for chatting ... it means a lot ... 

[[No...]]

Forgot to post this yesterday ...

 

WORD FOR THE DAY

 

Wednesday, Feb. 25

 

We do not believe in ourselves until someone reveals that something deep inside us is valuable, worth listening to, worthy of our trust, sacred to our touch. Once we believe in ourselves we can risk curiosity, wonder, spontaneous delight or any experience that reveals the human spirit.

 

e.e. cummings

 

[[No...]]

Having a really hard time here ...tried to sleep again ... and things escalated .... been in this place for about six hours now ... trying to stay out of the rabbit hole ...

[[...]]

Hello Nova, Coop and everyone..  It's been a while.

 

Almost 16 months here. I'm still having long horrible waves with good little ones in between. I have been stuck in bed or on the couch for the last couple weeks, my brain is in rough shape.

 

How is everyone here holding up?

 

I'm having major issues with eating sugar and fighting off any form of virus/bug. The fog and DR/DP is dibilitating at times.  What are others main issues?

 

 

Cheers,

 

 

Fonz

 

 

 

[[No...]]

Hi Fonz ... just hanging out ... pulling an all-nighter ... sounds like you are still riding the wave ... some of us here are as well ... this has to get better sometime ...

 

[[...]]

I'm pulling an all nighter too, the storm here is shacking my house. I guess some places in NS and NB have been hard this winter? Or so I have heard. About average here on the Rock so far..  I have been too sick to get out and enjoy my winter activities, all I can do is lay here and look at all my gear and dream of doing it all again.

 

Hope all is well,

 

 

 

Fonz

[[No...]]

Got a couple of hours of sleep early last evening and got blown awake with panic and stuff ... just been riding it out all night ... tried to sleep again and just escalates again ... oh well ... been here before ...

 

February has been rough weather wise around Halifax ... lots of ice and snow and wind ... should melt by June 

[[Sk...]]

Things have been weirdly better and hard at the same time. I'm stressed out as I wake up to my world and I'm fragile. Man, am I fragile. And if I can stay out of the black depression, I will be ok. But today it nipped at my heels and so I literally tried to outrun the thing with a 25 mile jog in 10 degree weather. And now I am home and will try to go to sleep early and pray these things are enough to keep the deepest despair away. It's been awhile and it has not been missed.

 

Yesterday I danced with my son to my favorite song, I talked with my sister about music and I made my husband laugh. It hasn't all been about withdrawal lately, thank you God! But it's still there in the corners. I hope I beat this. I hope I get to walk away more or less unscathed.

 

If you can run 25 miles in 10 degrees, that's a very good start.

 

Actually what I thought was, if you can run at all, that is a very good start !

[[Co...]]

Oh...Nova...I am so sorry you are getting hit like this....enough is enough.  You have my heart, I hate it that it's trying to mess with you. You so do not deserve this Nova after months of enduring this crap. .  Can't believe it did a cascade. Didn't we suffer enough in the first year? .

.....Nova...I know...and you know this will lift ...just not soon enough....I am so wishing you a better day.....coop

.

 

 

 

 

 

 

 

[[No...]]

Coop ... you not sleeping either? ... was going back to sleep again an hour ago and things ramped up again ... will try again in a while ... hope you are doing well ...

[[ga...]]

Nova and Coop...so sorry you both are having a difficult night.  Who knows why we go through these horrible cycles. They are what they are and we KNOW they dissipate over time....just don't know when that will be.  All we can do is muddle through it the best we can.  You are in my thoughts.

 

I wonder if the cold weather you folks are enduring plays any role in this.  We've had a mild winter here in the southwest.  I won't bore you with the details except we have lots of sun and a cold day is 65 degrees!  Sorry...  I know in my case that the weather doesn't play much of a role in how I am feeling...doesn't matter if it is cool, raining or over 100 degrees....I can get hit.  Was just wondering if maybe it does play a part.

 

It is 5:30 a.m. here and I actually got 5 plus hours of descent sleep last night.  I was in a better frame of mind at bedtime and I think that helped me sleep.  Still had those nasty unrealistic fears overtake me when I woke up.  I just haven't a clue why I start my day, regardless of how I slept with these irrational fears.  THe good news it is almost 6 and I have been able to put them on the back burner.  It helps that I am distracting by writing to you all.  I really hope better days are just around the corner.  All of us have had it rough the past few days.  It will get better...hold on a bit longer.

[[pe...]]

Garton,

Congrats on 5 hours of sleep. That sounds like a great start to good sleep.

 

[[ga...]]

Thanks Peace.  I feel much better this morning knowing I have enough energy to get through today at work.  Wishing you the same!!

 

[[Co...]]

Garton. 5 hours...good for you...at 16 months out, 5 straight hours of sleep is the best that I can do. I usually sleep 2-3 hours in a row , wake up and if I am lucky go back to sleep for a few more hours. Yes, I still wake up with sx , the improvement is that now they usually lift after I have been up for half an hour or so. If I stay in bed after I wake up I just lay in bed and ruminate....Garton I hope your day has some sunbreaks ....coop

[[ga...]]

Thanks so much Coop.  We all need those breaks as of late.

 

Still battling some of the negative thoughts this morning....I will win in the end though!

 

Hopefully, a better day for you lies in store.

[[Co...]]

Nova buddy..  yes I was awake on and off through the night...the good news...I was able to go back to sleep pretty easily and all in all slept almost 6 hours. This morning the morning sx with waking up were minimal

.....I hope you got at least a little sleep. I am thinking of you Nova and am sending all my thoughts for sunbreaks to you..it just has to be a better day for you. Love to you dear friend....coop

[[Sk...]]

Nova, sorry today is so bad again. I am getting a break but I will join you again tomorrow !   If this 24 hour wave pattern is anything to go by !

 

It is hard not to feel powerless and out of control in times like these in wd. What is in our control at this point ? A year ago, I would never have believed that now, at almost 16 months out ( 3 days to go ! Yay !), I would have never believed I could still feel  so bad.

 

Even now, it's a "good" day, but I wait with bated breath, expecting the odd irregular heartbeat to begin something worse. And I am so anxious, incredibly anxious. Oh well, we have seen worse.

 

I can't control a single thing in all this. It's out of my hands, which for me, was very hard to accept all along.

 

Now I am going to try to do some of the many things I can't do when I am really sick.

 

Everybody take care, 

 

Sky

[[No...]]

Thanks for the support Folks ... and your kind words ... went back to sleep a 630 AM woke up after an hour with a head as big as my room ... after things settled out for a bit, I went out ... still icy but they have put a lot of grit out so its not dangerous ... went to library and grocery store ... a struggle ... and came home ...

 

Things are still messing about ... not much else to say ... we carry on ... and when we getting really tired we carry on some more ... 

 

 

[[No...]]

Hi again ... got an hour's sleep this afternoon without getting blasted awake ... I suppose this is just one of those late in the game nasty waves many talk about ... and my stress threshold is completely shot ... sneezing sets me off ... 

 

Hope you all have a good evening...

[[Co...]]

Hi Nova, ...your wave sounds alot like that last awful wave I had some weeks back...the night you stayed on the thread with me for hours ( thank you so much). I have had some waves since then, but none as bad as that last one. My baseline improved from there and my sunbreaks became more freqent. I am so glad to hear that this wave is lifting now. Glad you got out to the market...hope you found some special treats for yourself.

....I went out to do some errands with my daughter this morning...no ice though...I need to try to push my comfort zone a little. I can get so safe and cozy inside my apartment that I forget to challenge the residual agoraphobia that still talks to me. I did get some mild motion and auditory sensation and a slight headache...all stress driven anxiety. It all went away after I had been home for 30 minutes...I did have a good time but not effortless mind by any measure.

.....how is the head pressure now?....coop

[[Co...]]

Sky,...so glad to hear that you are having a 'good ' day today. I can relate completely to doing things on a good day that are impossible on a wavy day. Doing a happy dance for you that your palps are quit today.  The heart and brain sx just make me crazed with anxiety and health fears. My windows and good days are just now starting to stretch out now. Last week and the past few days have had some wavy times but I really think more good than bad. ...that has only been within the last 10 or so days. Crossing my fingers and holding my breath. I am still mostly hanging around my apartment...I go outside alot with my dog but I stay close on the environment of my complex....Trying g to stretch myself to go away from my apartment but I am afraid of disturbing my nice baseline improvement...gonna have to get out there sometime.

  ..I hear you about feeling powerless against w/d. For me, that 'acceptance' of it is what it is...until it isnt has actually helped me not not obsess on time lines so much. I just know that this is my life for now and I try to do the best I can with it. I know things will get better...but finally get it....there isn't anything I can do to influence it much outside of good nutrition and trying to maintain a routine.

  ..Enjoy your day Sky.  .You and I and Green are at 16 months together.. Nova is a little ahead of us and HH and Garton are leading us over the 18 month mile marker.. we are in good company and we are going to make it.  Be still your beating heart..  coop

[[dr...]]

Just dropping in. Doesn't seem to be much change around here .  We survive through it though. 

 

Coop and sky glad you both seem to be on the "better" side of this.

 

This is turning out to be a nasty wave for me. 11 days of head and sinus stuff along with ocular migraines.  I haven't had head pressure this strong for so long that I forgot how bad it can be. It makes my balance feel off too.  I did get out for an early morning walk and even though I was tempted to go at a faster pace I didnt.  .  Good to be home as vacations are nice but in our conditions it is a long time away from our safety zones. My head stuff was so bad last night I took NyQuil.  I slept from 11:30 until 8am!!!  I would love to be able to do that without drugs though. 

 

Not much else to say as I. Hoping this head stuff will lift soon.  I have a performance tonight regardless.  Take care all.

[[Co...]]

Drew, I got a second long wave of bad head pressure right around month 12/13....after months of being free from it..it lasted about 2 weeks...I think head pressure is one of the worst. ...Funny, I just wrote about wanting to stay close to my comfort zone too....I went to Fred Meyer.  You went to Hawaii.  Lol...I think you are going to see new improvement after you round month 12-14.  You are doing really great Drew..  coop