6-12 month thread....

[[ja...]]

Hi MommyR and everyone else.

 

I can imagine how much everyone here is hurting. 6 months to 12 can be very hard. I had such a serious time with so many sxs that were off the charts from my C/T and I couldnt see much healing . I can feel for all of you. I am and have been 100% healed for about 3 years now and My god pls know you will be to. All of my horrific debilitating  sxs left all of them. I live everyday happy and work a full time job . I work out 6 days a week weight training. And my muscles took such a beating in w/d I never thought I could be so strong physically again. I am so happy to let all of you know that you will be so healthy again and Happy. Joy comes back and smiling comes back. Youll start to laugh so often again. The love for your self and your loved ones comes flowing again. That one was tuff for me. I couldnt feel the emotions for my loved ones it hurt me so much to I needed to be the woman I once was. I am!

 

Guys if you have any questions for me ask away. Ive been there and I cryed for month begging for help and relief. God knows I was fighting so hard to get Me back.

 

You are all so strong

 

~Jenny

[[Sk...]]

How true! You get used to the horror\ discomfort of one  symptom and then it disappears to be replaced by something new  !

 

Never a dull moment.

 

What wonders await us ?

 

How can we not become better people after having our endurance tested constantly this way ? You  become brave no matter what.

 

Now I am having an intense vibrations session. Bad vibrations, of course.

 

Good wishes to all the brave buddies out there.

[[Sk...]]

Jenny, thanks so much for taking the time to talk to us ! And what nice things you come to tell us ! I can't imagine ever being fit again but I do hope so much  this will improve.

[[ja...]]

Jenny, thanks so much for taking the time to talk to us ! And what nice things you come to tell us ! I can't imagine ever being fit again but I do hope so much  this will improve.

Sky your very welcome

 

MommyR contacted me on another thread and said you all needed allitle Hope.. I was rt were all of you are rt now. I remember and will never forget. Although Im so happy to say Im Noway Traumatized by this. I thought for sure I would be for life.

 

I was bed ridden for over 3 months lost all muscle tone and mass . Doctors saw this and became very worried . I knew it was this w/d and no matter how many sxs I had if I would beable to walk again I would be able to heal from every sxs over time. And thats what happened. It was gradual but we do heal. You will Heal I promise.. All of these terrible sxs and scary feelings will go away. You will become strong again and wake to Peace, Calmness and Joy

 

~Jenny

 

[[je...]]

Thank you Jenny!! So nice to hear the encouragement! Prayers for you mommy!!

[[Mo...]]

Thank you Jenny.  I feel hobbled today.  It's hard to believe this goes away for good.  Thank you for coming on.  I admit it was for me but I know others could use to hear it too.  I'm laying on my couch crying which is rare for me.

 

So tired .. I start to work out or get something consistent going but the mental stuff puts a chasm in front of me.  I have to wait for a bridge to come and the cloud disapate.  My brain hurts..

 

Thank you again for the reassurance.

[[ja...]]

Thank you Jenny.  I feel hobbled today.  It's hard to believe this goes away for good.  Thank you for coming on.  I admit it was for me but I know others could use to hear it too.  I'm laying on my couch crying which is rare for me.

 

So tired .. I start to work out or get something consistent going but the mental stuff puts a chasm in front of me.  I have to wait for a bridge to come and the cloud disapate.  My brain hurts..

 

Thank you again for the reassurance.

Mommy 

 

Pls dont cry. I know how hard this is . There were time I just cryed so hard for so long on the floor . I couldnt get any relief. I didnt have any windows but three that lasted 3 hours each and 3 months apart. I couldnt see the end in sight. Its crazy tho because it can all just subside out of nowhere and relief can happen. Windows and waves is ho this goes. But then the windows last longer and the waves less. Pls know your so strong and you will get through this . I know the pain so much my heart hurts knowing your feeling that to. But try and take a deep breath and know you will be ok ...

 

~Jenny

[[Mo...]]

I will stop crying.  My kids will wake up and I don't want them to see that.  I am going to be ok, just needed a boost.  I promised the my boys and the neighbor I would take them to a bounce house, so I'm hoping that blows this out.  I don't know, but I trust and believe what you say...regardless of how I feel. 

 

Thank you again Jenny.

[[Sk...]]

Jenny, thanks.

 

I have not had any real windows at almost 10 months out. I measure them by lack of suffering. When I did have a window of sorts it lasted an  hour or two.

Everybody has windows so I worry this might mean it will last longer for me, it might take longer to heal.

 

Do you know of anybody with a similar experience  ?

 

HAve you got your memory back ?

[[ja...]]

MommyR

 

Your doing so good. I to had 3 little ones to care for in w/d. It was the hardest ever but also my driving force. Little blessing and angles for us.

 

Ill check in later to see how you

 

~Jenny

[[Mo...]]

MommyR

 

Your doing so good. I to had 3 little ones to care for in w/d. It was the hardest ever but also my driving force. Little blessing and angles for us.

 

Ill check in later to see how you

 

~Jenny

 

Thank you.. my mind is full of the lies.  She made it but you won't be that lucky.  I know they are lies... right now, I want to be you when I grow up

[[ja...]]

Jenny, thanks.

 

I have not had any real windows at almost 10 months out. I measure them by lack of suffering. When I did have a window of sorts it lasted an  hour or two.

Everybody has windows so I worry this might mean it will last longer for me, it might take longer to heal.

 

Do you know of anybody with a similar experience  ?

 

HAve you got your memory back ?

Hi Sky

 

That was me .I didnt have windows maybe 3 that were like the sxs lessened. But Never without sxs. I healed after a horrifing wave at month 10 .It lasted me until month 12 13 then Huge healing showed up. I pray you see that healing thats been happening for you so soon.

 

My memory was so bad and so scary I also had so many motor functions that were terrible. I couldnt put one foot infront of the other and couldnt speak well. Lost my ability to articulate my words that was upsetting. But all of them are perfect again and my memory is great !

 

 

[[ja...]]

MommyR

 

Your doing so good. I to had 3 little ones to care for in w/d. It was the hardest ever but also my driving force. Little blessing and angles for us.

 

Ill check in later to see how you

 

~Jenny

 

Thank you.. my mind is full of the lies.  She made it but you won't be that lucky.  I know they are lies... right now, I want to be you when I grow up

Noway Mommy your better then me ! If you knew me here when I was in the thick of my w/d the thing I always said was Dont listen to the Lies this w/d tells us. W/D is a Lier. Im gonna find a post I made a long time ago I hope it will help all of you here .It may take me some time to find it here its been years lol

 

Ill be praying your day is a good one and you can atleast smile a few times..

[[je...]]

I just had a horrible wave in month 10 too, and Life had a bad one also. So hard to believe you can get then this far out.

[[li...]]

Good morning kids,

 

Not feeling great.  I can feel some weight on my brain, abdominal discomfort, lower back is in a vice, chest discomfort is pretty strong, etc.  Can't pull the raft today.  It's amazing how this stuff works.  Mentally it feels like panic or fear, paranoid.  Hasn't shaken down yet.  If you pray, say one for me.  I'm looking for my bridge right now.  God is always faithful to me. 

 

Funny how fast this stuff makes you want to to cry uncle.  My creative thought process is completely shut down.  A box is trying to form around my brain.  I am ready to crawl into a lap.  Need one of my moms stories.  Trying to recall on my own.  I am thinking of Life saying one day we wake up and this over.  It's what my mom said too.  One day this will all be behind us. 

 

 

Hi Jacd- you are welcome any time

 

Sky- Yup, this frustrating. 

 

Jenny- I need to hang with you today.  Tell us all the normal fun stuff you. Soooo happy you feel good.

 

Nova- was hoping you would be up.

 

Coop & Life- what's the word?  Did you sleep well?  I admire you both

 

Green-  Give me some slap in the face reality comment

 

Mrs- I need your PMA (positive mental attitude)

 

Free-  check in good or bad

 

GMIT- hope you got to sleep

 

Peace- chop wood, carry water.. Can't wait for a report.

 

Going to go pray for now.  Look for some relief.  Will be back for sure.  Hubby is getting ready to leave.  Thanks for being here.

 

Mommy at

 

Mommr, I know how you feel -- just remember it is only temporary. There are sop many people that have told me that we get these one last big waves. I am still anxious today not depressed. I am concerned though as anxiety turns into depression for me. I am getting this feeling that I will be able to think my way out of this mess I got when I returned back to Florida. This wave for me is going on 2 weeks and that is really long for me. I am "catastrophising" -- that is to say I am "what ifing"  with a real negative slant lately. This stuff is truly evil -- I think the trick in dealing with waves so late in the game for us is just acceptance -- as hard as that is to do. My latest lie is "what if I just developed General Anxiety Disorder and I am just going to have to accept that?" Mommr, think about what you think about in a window. Waves are not permanent. They are truly temporary!

 

Life

[[li...]]

I was just wondering... is what many here feel a sought of fear that hits your gut and mind and just simple makes you freeze in fear -- afraid to move on or do anything productive? Kind of a negative feedback loop that keeps you frozen in a wave?

 

Life

[[ga...]]

Wow Life...you sound like me with the what if's.  I wish we could just turn our minds off when we get stuck in this pattern.  With me I can dig myself into a hole where I feel totally consumed with depression.  Always thinking negative thoughts and how my life will be if these thoughts come to fruition.  Logic tells me that things are good now and why waste time thinking about those what if's that pull me down.  I have been in this cycle for quite some time now and hoping it lifts soon.  Let's try and stay positive.

[[Sk...]]

The worst part is when you think that the negative is actually on to something and that you were  actually deluded before !

[[Co...]]

Jason.....One million thanks to you!....Your post was EXACTLY what I needed to hear...at exactly the right time. Yesterday at month 9.5 I was considering reinstating at a low dose and tapering again.  I did not because I got a momentary sunbreak ands I couldn't throw away 6 months of taper and 9.5 months of p/w. I cycled in and out of acute s/x and sunbreaks throughout the day with one 'out of body ' dissociative dizzy panic while awaiting a PT appointment...but I slept better than I have in months with ling dreaming last night. This morning looks good. At month 9.5 head pressure has been my most disturbing s/x that causes me huge anxiety.

......I was totally taken off gaurd by a 10 day wave in month 9 after 6 weeks of brief ( not more than 24 hours) waves, windows that would last half days and a consisteant baseline of 70-75% and was beginning to get my life back cautiously. The 9.5 month wave that felt exactly like taper and acute Co.pletely undid me. ...

...My question to you is: . .Did you have stunning waves late in year one? ...When were you free of your most troubling s/x.

....Your post made me so glad that I did not reinstate... ...thank you .....and thank you for taking the time to come on with your post after you feel 100%....there are several of us in the group between month 9-12 feeling discouraged and worn out after months of taper and p/w...your post is a cup of cold water on a long hot parched walk....thanks for the boost...

........happy happy living to you.....coop

[[Mo...]]

Honestly, what truly scared me was I woke up around 3am..(as usual) and actually felt my brain go 'clunk'..and then the weight was there..my thought process shifted while I watched it all from my minds eye.  To actually have a sensation of this coming on.. much like the switch that turns a wave off was scary.  Hubby was up at 4am to leave for his trip.  My chest was still tight from yesterday..which was obviously leading up to today.  My heart was fluttery. 

 

I will put this uptick on a hormone surge as I track my cycles very closely in anticipation of spiking.  It didn't really matter though.  The thought process was there and dropped in my lap.  Instant prison.  Pure evil.  I got on the boards because sometimes I need flesh and blood to get thru.  There was this guy named Mr. Scared.  He wanted to give back and said to lay out our thought process for him so he could help.  Someone had quoted that when he was tapering he took over the boards from his panic which was so funny to me.  Then I saw Jaso19 and remembered her story and how I wanted to be working out and healed and fully functional.  I had this vision of a 'getting it done' mommy.  It was great to have her jump over her for us (me).  So hard to believe it's true this all goes away.. but in a window I know it is.  It's another world. 

 

This has shades of my low blood sugar fears back at month 6.  It was 5 weeks of thinking I was going to pass out.  That's what this was doing and my chest was in a vice.  It's lifted right now.  There is sense of tight breathing.  My mind is in chop wood, carry water mode.. but I have that anchor sensation down the back of my throat. 

 

Life - Yes, it must be temporary.  It is, it's just so wretched.  A broken leg is temporary..but the pain!  No.. I know what you are saying.  I know it's true.  It was truly frightening to feel my brain clunk like that and then switch me over.  I feel like 'slapping' it and yelling, 'HOW DARE YOU!!".. Like it stole from me.. 

 

Kids.. thank you for being here.  GMIT..glad you were awake and on the boards...  Jaso19.. thank you again..

 

Need to get ready for the bounce house.  The little neighbor boy was knocking at the door before my oldest was awake.  I have all three of them (yup even  the 3 year old) playing mine craft and I'm going to hit the shower.  You will be my pocket for the ride!  Weeeeeeeeee

 

MommyR

[[Gr...]]

Jenny, thanks.

 

I have not had any real windows at almost 10 months out. I measure them by lack of suffering. When I did have a window of sorts it lasted an  hour or two.

Everybody has windows so I worry this might mean it will last longer for me, it might take longer to heal.

 

Do you know of anybody with a similar experience  ?

 

HAve you got your memory back ?

Hi Sky

 

That was me .I didnt have windows maybe 3 that were like the sxs lessened. But Never without sxs. I healed after a horrifing wave at month 10 .It lasted me until month 12 13 then Huge healing showed up. I pray you see that healing thats been happening for you so soon.

 

My memory was so bad and so scary I also had so many motor functions that were terrible. I couldnt put one foot infront of the other and couldnt speak well. Lost my ability to articulate my words that was upsetting. But all of them are perfect again and my memory is great !

 

Jenny, thank you so much for taking the time to come here and give us all hope.  I try to be positive and supportive of others and accept all of my s/x, but I'm scared to death and so tired.  I want to cry when I can't feel love for my children.  I also many days have great difficult articulating, putting words together.  It takes me so long I never finish my sentences, people just start talking over and around me.  It happens a lot, so I know it's me.  Thank you so much for coming back and giving hope.  It means a lot

[[Gr...]]

I just had a horrible wave in month 10 too, and Life had a bad one also. So hard to believe you can get then this far out.

 

Jenny, I'm so sorry about your wave.  I didn't know.  You never complain.  I'm so sorry. But happy your 7 hour drive went well.

[[Gr...]]

I was just wondering... is what many here feel a sought of fear that hits your gut and mind and just simple makes you freeze in fear -- afraid to move on or do anything productive? Kind of a negative feedback loop that keeps you frozen in a wave?

 

Life

 

Life, that's my primary s/x, since right after acute.  I'm frozen in place.  That's what I talk about when I say I can't take a shower -- (now I can)  But, yes, I guess it's fear, I never knew what to call it.  Frozen in fear, unable to do things, go places, make decisions.  You put words to it.  I never could figure out how to explain what it was

 

It passes.  You can work with it.  Start with single small goals, compartmentalize stuff.  Don't worry, you're pretty far out, this is not here to stay.  Also, you had a trigger, remember?  The lawsuit and the tragedy.  It will pass.

[[Gr...]]

Hi, Everyone

 

I'm sorry, I don't feel too well.  I wish everyone a good day.  I'm so glad Jaso visited, I really needed to hear her.

[[li...]]

the thread is quite today -- is it a full moon tonight? 

 

LIfe