6-12 month thread....

[[Co...]]

:'(Lisa....thank you so much for your post. I could have written it myself. I am right where you are...a good day....a bad day.... I thought I would be so much better at 10.5 months out. Head pressure and s/x are my most challenging s/x now too...including all the health fears,  intrusive thoughts about head s/x, obsessive worries about head s/x including thoughts of menningitis. I also have neck/back/shoulder pain. Font apologize for posting the truth about your s/x...it is so helpful go those of also having bad waves to know that we are not alone...or left behind while everyone else is healing. ...This last wave has set me back in my confidence about getting out. In June/July...now I am staying at home again and afraid to even take the dog out again. When a window dissolves into another wave it makes me cry every time....

.....I sm so sorry Lisa that you are having tough times....I hope this resolves for you soon. It is so good that you are having some sunbreaks...healing is happening. ..I keep reading Analog ' s,  PianoGirl 's and Pamster 's success stories. ....You are not alone in this....and nobody is going to be left behind... We are going to heal too Lisa.  Wishing you sunbreaks and an end to head s/x....love yo you Lisa......coop

[[Co...]]

Green...God bless you friend....you are such a bright light here. So glad to know that you are picking up again...I am trying to follow....keep the bread crumbs coming along. I am more where Lisa is today....lots of health fears ( beginning to think the boatiness and head s/x are more than p/w s/x...even though I know it is not). ....Sometimes it all lifts in the second part of the day...hoping for that....and my daughter is coming this afternoon so I am trying to tweak my negativity....

.....Yes...lol....those peaky waves in month 4/5...6 ....and oh yes.  6...6 was a whopper...oh, ...and 9...yep..9

....I will say I think my windows are brighter...and they were coming along closet together...until this last wave that is going 3 weeks now ( but with a nice 2 day window at day 10)...but my waves seem longer and darker. I was in a pretty decent pattern in month 8 of short waves.  sometimes lifting completely within a few hours of getting up. I was getting hopeful about returning to volunteering at my grandsons ' classrooms...now I am all wobbly again....well...the day is not over ...hoping for a sunbreak

[[Co...]]

Whoot....you are fling a fabulous job of keeping it going. I worried about you after you dropped off for awhile. You sound like a different person rthsn the one who came on in May (?). ...Yay for you...you are going to make it through ...so glad to see you back....coop

[[je...]]

Jenny.. I'd happily take your sleep schedule as of late.  My wakeup after going to bed at 11 is 2 a.m. and unable to fall back asleep.  I just can't relax and anxiety takes over and it's at the point I just expect it to be this way.  Not good.

 

 

Thanks for the reply Garton, lets hope this passes soon and we both start sleeping better.

[[Gr...]]

:'(Lisa....thank you so much for your post. I could have written it myself. I am right where you are...a good day....a bad day.... I thought I would be so much better at 10.5 months out. Head pressure and s/x are my most challenging s/x now too...including all the health fears,  intrusive thoughts about head s/x, obsessive worries about head s/x including thoughts of menningitis. I also have neck/back/shoulder pain. Font apologize for posting the truth about your s/x...it is so helpful go those of also haviThis last wave has set me back in my confidenng bad waves to know that we are not alone...or left behind while everyone else is healing. ...ce about getting out. In June/July...now I am staying at home again and afraid to even take the dog out again. When a window dissolves into another wave it makes me cry every time....

.....I sm so sorry Lisa that you are having tough times....I hope this resolves for you soon. It is so good that you are having some sunbreaks...healing is happening. ..I keep reading Analog ' s,  PianoGirl 's and Pamster 's success stories. ....You are not alone in this....and nobody is going to be left behind... We are going to heal too Lisa.  Wishing you sunbreaks and an end to head s/x....love yo you Lisa......coop

 

Coop, first, I'm so sorry you are suffering so.  I know that left behind feeling, I get it frequently.  I think when we are in a wave we feel scared and left behind, esp. this far out  And the long waves like the one we're having now are especially discouraging.  I wrote recently in my progress log that I have a lesser level of function now than I did in acute.  It's true, I had more energy then, and I think I was more hopeful that I would be healed "pretty quick, " despite the intense symptoms.

 

As we get further out, we're more afraid we won't get better.  so, for me, when I hear someone on the thread talking about things they're doing in the world, if I'm in a bad wave, I get discouraged and start thinking maybe I'm really so much worse than everyone else, maybe I'm never going to get better.  And some people do have a higher level of function than I earlier in recovery.

 

But that doesn't mean we're not going to get better.  We are.  It's just the way our bodies are healing.  Remember Pianogirl and Pamster.  They had really bad withdrawals, they are closer to our age, and they healed. 

 

:smitten:

[[je...]]

Hi Lisa,

 

So glad to finally hear from you. Please don't stop posting on here just because your not feeling well. You need all our support and it honestly doe not bother me at all. I love hearing how everyone is doing--good or bad. I don't know much about Lyme but I think Green's post about the window/wave thing makes a lot of sense. Do people with Lyme get windows?? The fact that you are having good days should help you to know that you are healing, otherwise you would be sick all the time. I read somewhere on here that said if it truly was an illness you just get sicker and sicker--you would never have ANY windows. This should give us all a lot of hope! Hugs my friend, Jenny

[[do...]]

Dear friends.

 

After a week from hell, this wave is done!  I am just beginning month six off of ativan.

 

I was able to enjoy a visit with some friends and half a day catering prep with a friend.  Must enjoy this window.  The sun shines today as well after a big cold and wet week which coincided with my wave.  Imagine that.

 

Better days ahead.

 

Domestic Advisor

[[Gr...]]

Lisa

 

I thought you were close to Peace, and I just checked and you're right behind her.  She just came out of something awful, it lasted a really long time.  I think Peace just had her 8th month.  Let's try to be hopeful this passes soon

[[Co...]]

Green....thank you so much for the encouraging words...every time I have a nice window I think....ohhhhhhh ....maybe this is it....maybe I am going to heal....I know this will pass....every single word you said was so true...so very glad you are having a good stretch....you deserve it so much....coop

[[li...]]

:'(Lisa....thank you so much for your post. I could have written it myself. I am right where you are...a good day....a bad day.... I thought I would be so much better at 10.5 months out. Head pressure and s/x are my most challenging s/x now too...including all the health fears,  intrusive thoughts about head s/x, obsessive worries about head s/x including thoughts of menningitis. I also have neck/back/shoulder pain. Font apologize for posting the truth about your s/x...it is so helpful go those of also haviThis last wave has set me back in my confidenng bad waves to know that we are not alone...or left behind while everyone else is healing. ...ce about getting out. In June/July...now I am staying at home again and afraid to even take the dog out again. When a window dissolves into another wave it makes me cry every time....

.....I sm so sorry Lisa that you are having tough times....I hope this resolves for you soon. It is so good that you are having some sunbreaks...healing is happening. ..I keep reading Analog ' s,  PianoGirl 's and Pamster 's success stories. ....You are not alone in this....and nobody is going to be left behind... We are going to heal too Lisa.  Wishing you sunbreaks and an end to head s/x....love yo you Lisa......coop

 

Coop, first, I'm so sorry you are suffering so.  I know that left behind feeling, I get it frequently.  I think when we are in a wave we feel scared and left behind, esp. this far out  And the long waves like the one we're having now are especially discouraging.  I wrote recently in my progress log that I have a lesser level of function now than I did in acute.  It's true, I had more energy then, and I think I was more hopeful that I would be healed "pretty quick, " despite the intense symptoms.

 

As we get further out, we're more afraid we won't get better.  so, for me, when I hear someone on the thread talking about things they're doing in the world, if I'm in a bad wave, I get discouraged and start thinking maybe I'm really so much worse than everyone else, maybe I'm never going to get better.  And some people do have a higher level of function than I earlier in recovery.

 

But that doesn't mean we're not going to get better.  We are.  It's just the way our bodies are healing.  Remember Pianogirl and Pamster.  They had really bad withdrawals, they are closer to our age, and they healed. 

 

:smitten:

 

This is an absolutely awesome post. I have been wanted to find these words Green. Sorry to all that I have been posting and going and not really participating. I have been dealing with outside stresses so I am not sure what is a wave and what is life. Coop, I know that you will feel better. Look, this post says it all !!!... we are not new to this process. We all are tired and when you get hit with a huge 6 week wave when you have never ever experienced one this far out... you simply get very scared to say the least. When we are in acute we find the energy because our hopes of getting better are is so prevalent and imminent. We start doubting after such a long time. Have to leave right now but I send my love to all. You are family!

 

Life

[[Sk...]]

As we get further out, we're more afraid we won't get better.  so, for me, when I hear someone on the thread talking about things they're doing in the world, if I'm in a bad wave, I get discouraged and start thinking maybe I'm really so much worse than everyone else, maybe I'm never going to get better.

 

Very beautiful indeed. Where I have been today, exactly.

 

I am feeling better after a crying jag and some family pep talks. I have a harder time writing, how can I reach my buddies if I have to write each  word 7 times before I get it right ?

 

If only my brain could get a little little better. I would trade with what physical symptom ? So many to choose from !

 

I am snarling as I write, every time the words don't come out I snarl ! Poor mr Sky !

 

Some suffering, some joy on the thread.

 

Coop, sorry you are in so much misery.

 

Everybody, good healing.

[[Fr...]]

Thanks Sue for the pep talk.  I have no clue what is happening to me.  When I don't hurt, I have zero depression.  So bizarre.  But I'm glad you are feeling way better.  Stay that way, K?  That's an order.  You're such a sweet person and deserve only the best in your life.

 

Coop - I'm sorry you're feeling this way too.  It's such an arduous journey.  I read the blogs and see others who are still in pain so far out  and get so discouraged.  We must get better soon, we just must and yet I can't grip onto that. I feel so sad too every time a window closes because the joy while in it is so wonderful!  I was able to eat dinner and lunch out with my husband.

 

I have stopped wearing makeup, stopped dying my gray roots and wear only jeans and yoga pants, nothing nice because I feel like crap - but all that is fine, if only I could not be in pain and have nerves on fire.  If this it then I don't know how to handle it.

 

The neck issues make me feel if my brain doesn't get enough oxygen.  My world is surreal as is my body.

 

I feel like I've left my body already. 

[[Co...]]

Life...you are such a dear person...I know you are going to come back up to that ' nearly healed ' baseline again as your life stressor passes...I am so thankful for your presence on this thread and wishing you 100% healing...coop

[[No...]]

Hi Folks ... maybe for some of us we have traded that "roller-coaster on steroids" for the seemingly unending "carousel" ... round and round ... in the sunlight ... in the shadows ... round and round ...

 

And the frustrating thing is we have to stay on it until it stops ... we have promised ourselves we would stay "on" it until the "ride" stops ... so ... which "seat" would you like ... the pony ... the sleigh ... the elephant ... which one is your favourite ...

 

Now ... if they would just vary that music a little this "ride" might be more bearable ...

 

The "ride" does end ... the "music" does stop ... says so right here on my ticket ...

 

[[dr...]]

I'll climb on the big rat with the saddle.

[[No...]]

Hi again ... this on again, off again wave stuff is frustrating for me ... this seemingly lingering stuff is, is ... well I don't know just what it is ... bloody boring ... and as so many have said, "this has gotten very old" ...

 

Hours of good functioning ... then zapoorulah ... then okay again ... then boink again ... going over to the store ... need to stock up on some more patience ...

 

Hang on folks, under all this mush some good healing is going on ...

 

[[No...]]

Okay Drew, I have the Turtle covered with my expansive behind ... 

[[Fr...]]

Hi Jenny!  I hope you're feeling better always.

 

Hi Nova, So glad you're here saying hi and getting better everyday

 

Lisa

[[No...]]

Lisa ... yep ... we are all getting better ... just these last two weeks I can't "see" it ... or "feel" it for that matter ... it wears on me some ...

 

[[wh...]]

You guys sound good. I'm happy for you and feel better knowing that this does go away.

I have those moments where I feel like myself again but the anxiety creeps back in. Benzo lies telling me I won't work again, there's something more wrong with me; why bother you are stuck here.......blah blah blah.  Still really affects me and I am still off work which really doesn't help.  Sitting around with the intrusive thoughts is horrible as you know. 

What were your worst thoughts?  MommyR you sound like things are great.  Did the horrible thoughts just stop?

I have a great life just waiting for me but I feel like I'm walking on egg shells and feel like I could just shatter any moment.

I still go do things but the health anxiety is always nagging at me.  Ugh.  Normal for 5 months out?

You guys are inspirational.  thanks

[[Co...]]

Hi Nova....so good to see you...sorry to hear of the revolving door s/x...drives me nuts nuts nuts...I make plans with my grandsons and cross my fingers hoping it will be just me and my Best Boys without my gang of annoying demanding rude noisy ' companions '...You are so steadfast in this Nova. Every now and then I can ' accept ' whatever the day brings and ' go with it ' envisioning Ghandi and Buddah....and then at a certain point I just lose that frame of intentional mind and want to scream for an arsenal of potent weapons...even though I am truly a pacifist through and through

.....Nova.  we have to keep on moving forward...we are still realatively early. I have kind of stopped counting days,  weeks,  months,  waves,  windows and s/x...some days I am better at it than others. I have moved my expectations to, it happens when it happens but I hope it happens by 18 months...which means I am half way there ( can not imagine I ever thought 6 months was the magic number). I read all the success stories over and over on some days and it seems that most write about healing between 14 and 24 months with good improvement between 14 and 18 months......well...so much for not counting days, months,  weeks and waves/windows....back to acceptance...take care Nova ...coop

[[...]]

Hey guys;

Friday evening attended a weekend mens catholic retreat.  Friday evening was feeling like crap typical racing thoughts anxiety and doubting I'd be able to sleep away from home.

 

I did not sleep at all. Sat. Morn.  Nausea, dizziness, crazy thoughts "Ill never get out of this".

Wanted to get in my car and drive hm but realized I'd feel the same way no matter where plus I'd get down on myself of not sticking it out.

 

Sat night felt better and slept a solid 7 hrs. Sunday morn zero anxiety felt almost whole all day and through evening but was having a cough and felt a cold/flu coming on. Sunday night felt terrible flu symptoms and they continue today. Have not slept much at all last 3 nights. Heavy cough sneezing stuffy feeling of chest and sinus. Dr did throat culture and advised mucinex & Zyrtec.

 

Bb Parker said mucinex was safe as long as only ingredient is the expectorant and advised against the Zyrtec. I started the mucinex today and felt some sx like nervousness. Anyone comment on the effects of cold/flu ramping up WD symptoms as well tips on getting by during process ?

 

I am happy to say that for the first time in many months since Sunday the anxiety depression which I would get every other day has began to ease,for the exception of Monday when I had a bout of depression but the flu may have made the sx worse and it was still lighter than the train wrecks I was experiencing. All that praying!!

 

There was a bb Angel on the remeron thread that told me it took her 3.5 months to notice slight improvements and 4-6 weeks after that to resolve. I'm at 3.5 months off the rem and noticing lots of  clarity that has lasted into the following days with minimal to no anxiety and have not had any heavy depression for over a week.

 

I always thought the bulk of my despair was the darn remeron. Some people can tolerate it and some go through the most horrendous experience imaginable (me). My dr says I got a double whammy & don't get too comfy cause sx most likely will come and go.

 

it's been pretty much constant acute suffering since march for me I know I still have a ways but I see some Hope this will begin to ease.

 

Pls advise on cold/flu/cough ideas,

 

Thk u all , jrod

 

 

 

 

 

[[wh...]]

Hi Coop

How are you?  Still improving.  I can't believe how long this takes but you have been amazing and so helpful for all of us.  Nova too.

I haven't seen you guys here much lately.  I was hoping it was because you were out partying because you feel so good.

I understand the waves and windows so much more now that you always talk about.

I wanted to say hi and I miss you and thank you for all your support.

[[ga...]]

Whoot....sounds like you're experiencing many of the same issues I am of late.  Seems many of us do and we all have to endure the rough times.  We will get through it.  Just a matter of hanging on and keeping distracted the best you can.  As poorly as I felt today I managed to get out to the gym for a short workout.  That certainly helped.  I know getting a workout if at all possible does seem to help ease some of the anxiety and intrusive thoughts.

[[li...]]

Kids.. Good morning,

 

 

I think something has happened.  Last night I had to give a presentation on the website to a board member group.  I spent the day finishing the site and dressing.  It's been super hot here, crazy hot, so I was worried about hot flashes.  After I got to the meeting, I walked in and they had already started.  When it was my turn I presented well, answered questions, made jokes.. not once did I sweat, feel panicked, anxious, there was nothing there.. JUST ME.  I drove home and realized I was 100%.  Nothing was there. 

 

When I got home I took and atarax (r/x antihistamine).  I feel asleep around 10pm and didn't wake up until 6am.  There was a hot flash, but no funk on me.  It was amazing.  I am thanking God this morning for a glorious break in these symptoms.  The clouds have parted for me today.  Yesterday, the hysteria had me ready to scream. 

 

You never know what a day can bring!!!  Please hang in there!!

 

MommyR

 

M, that's amazing!  I am so happy to hear this.  You truly are getting better.  Yay.

 

Thank you Green!!  Huge happy dance!!

 

This is absolutely awesome Mommyr!