12-18 month support

[[Co...]]

I have lost track of yesterday's posts so I am just jumping on here. ...

.....Nova.. very glad Mrs Nova keeping you off the ice.. we need you in posting shape here..  Are you getting any sun yet? ...We had 'spring' here for awhile...now sunny still but cold...back to 15 minute walks with the dog with all the mittens scarves and cold gear. ...I am holding on to a decent baseline ( 85%..give or take) Insomnia moderate to persistent, body pain comes and goes and oddly d/r has a standing appointment every day for the most part at 1pm...My anxiety is 90% better.  My head pressure is less but now I get little sinus like pains in various parts of my head..randomly.  Do you get those?....My math skills are still elusive but I can count the months on the calender if the calender has clear graphics and large numbers.  Lol

....Nova, I hope you are out of your wave to a good baseline.  Please don't walk on the ice anymore.. coop

[[Co...]]

Drew,....A lot of us seem to be getting the spirit breaking body pain in the last couple of months.  Has to be w/d. I got hit so bad with it about 5 weeks ago. I was also chewing tylenol and ibuprofen. The Ibuprofen helped a lot, but it elevates my b/p by the third dose ..it is one of the side effects of ibuprofen, but not everyone experiences it. My body pain has continued to come and go in wave fashion. A nice dip in the hot tub might help...I am so glad for you that you were able to go on vacation...You are brave ...and you are healing...enjoy your last day in all that sunshine and warmth...coop

[[ga...]]

Peace.. I am impressed, a 25 mile jog ...wow!! Or was that 25 minutes.  Either way, good for you.  Keep it up.  I can so relate to that deep dark place you have visited at various times.  As you know I deal with pretty much the same and it has been more than difficult the last two nights with me not being able to fall asleep.  I lay in bed letting these horrible thoughts consume me.  I am so frustrated that I cannot do a better job at warding them off.  My wife says just change your thinking in a more positive direction.  Think happy thoughts, good times and places and such.  What's with me that I can't do better at this?  I've slacked a bit on the exercise and know I must get back in the groove.  Critically important for many of us to get through the tough times.  Wishing you more good days ahead.....Garton

[[Co...]]

Drew...p.s. ....I have to agree with Sky...all this stuff can not be psychsomatic...unless we all suffer from the same specific somas. My sx are often triggered by stress but that is different than psychosomatic. After reading the success stories and late progress journal notes of buddies in the last 6 months of year 2 I believe all of us really are going to heal.

....coop

[[ga...]]

Drew...I congratulate you for being able to take the vacation to Hawaii.  Just fantastic and sounds like you are enjoying yourself for the most part.  I still find I put stumbling blocks in front of me when it comes to taking vacations....such as I will be tired and miserable, my wife will have a bad time, I won't want to do anything exciting and fun and on and on it goes.  Lots of these fears stem from a trip I took with the family for my sons high school graduation back in 2008.  I had just gone on disability.  Was on high doses of benzos, ambien and celexa.  Drugged to the max and you can only imagine how I felt.  Was such a downer and disappointing trip for me as I tried to put on a good face for the family.  My wife new how low I was feeling and I probably hid much from the kids however, I suspect the knew something was not right with dad.  Three years later I took a cruise with my wife and it was more of the same.  I remember being so down that I had thought...thoughts only...of jumping overboard.  I  got through the 7 days but again ruined what should have been a nice cruise for my wife on her 50th birthday.  I KNOW it is these memories that are holding me back from trying another vacation.  I can only hope someday I will just DO IT.

[[Co...]]

Peace, " dancing with my son" and " laughing with my husband" definitely sounds like great moments of sunbreaks...and the fact that the depression has been missing for awhile is so so good to hear. That is exactly how my anxiety started to drop off.  gradually. I have just noticed in the last 10 days or so that it is showing up much less. I haven't kept Nova up with frantic posts for well over a week now. I still have moments ,especially if I get any scary physical sx but it has been unmistakably better lately.

...Peace .. a jog?...wow.  you and Drew definitely not taking this sitting down. ..I am still getting bouts of fatigue and the leg weakness that a lot of us post about. I was so much stronger physically last year. I have wiped out on my yoga so much this winter. Time to push a little.

...Peace I am so glad you caught a sunbreak. I think you will be seeing more of those in the next few months...Yes you are going to get through this too.  When I read over the posts I see a lot of healing interwoven in the sx and waves.  We are not there yet, but we are getting there .....Sleep good ....coop

[[pe...]]

Coop-

Thanks. I've been following the back and forth and all around between you and nova, Sky, HH and Green. You are all wise and steady, honest and brave and I take great comfort from the exchange even if I'm not participating. I just keep telling myself 'it's not real' and 'it's getting better'. That's my hope. Short and simple.

 

Hope you sleep well too, Coop.

Peace2

[[pe...]]

Thanks, Garton. I know you know this darkness. I hope we sleep well and wake bathed in light and joy.

 

 

Peace2

[[ga...]]

Wishing us a good night.  I am already letting some of the pre sleep anxiety spike.  It's just such a hard thing to control...or just let happen without worrying about what will happen tonight.

 

 

[[pe...]]

Garton,

I listen to the same guided meditation every night. It drowns out the thoughts in my head. It took some time big works really well now. I always fall asleep within the first twenty minutes. Could you try something like that? The one I listen to is by Louise Hay. I bought it on iTunes and listen to it on my phone. It's the one about self-healing.

 

Peace2

[[ga...]]

You know Peace, over the years I have tried these guided meditation tapes and just haven't had much luck.  My mind just seems to go into a different gears and I am distracted in a not so positive way.  Maybe I haven't picked up the right tape.  It just seems the past few days have been extra tough. 

[[No...]]

Peace ... that's us ... some good news, some not so good news ... so glad the meditation helps you to get to sleep ... that is a gift ...

[[No...]]

Garton ... as you know, memories are just memories ... and sometimes they carry extra energy, sometimes they don't ... and we create new ones every day ... that's why we are here ...

[[No...]]

Coop ... good to hear you are getting a "break" ...

 

I tried to shut down real early last night ... didn't work ... started getting hit pretty hard again late in the afternoon ... spent the night in the recliner, fitfully dozing ...

 

Head pressure, and ear and sinus pressure ... some dr ... and this damn congestion ... comes and goes ... totally clear for a while and they kaboom ... and the aches and zaps that travel around ...

 

Feels like I am carrying some ogre on my shoulders ...

 

So, its Thursday ... another medium storm passing by today ... and okay, no more icy adventures ... so today is another housebound day ...

 

This symptom stuff has to go away sometime ... sooner rather than later I hope ... last year it lasted for over two months, let's see what this year has in store ...

 

Be Well, Folks ...

[[pe...]]

Nova,

I think it's Wednesday. Though I dreamed it was Friday. What does it matter, just tells me how many more days I have to sit in this classroom in a fog. Oh, brain, how I miss you.

 

I've been trying to sort through my new state. At one time I was saturated with symptoms and now they sit on me like a coating, penetrating less, but still making it hard to move, breathe, think.

 

Time.

 

[[Co...]]

Peace, that is a spit on description of how the depth and intensity of our sx change in the second year. For me the " coating' keeps me constantly separate from my experience of being in contact with my world. Some days only slightly...other days moderately. ...l want this to lift for you...and me and Green and all of us trying to connect through d/r and cog fog. ..Peace, those " dancing with my son" moments are going to come back and start showing up more. You have my heart Mighty Girl...hoping for you that spring break is coming up soon....sending love....coop

[[No...]]

I called the Weekday Information Centre ... today is indeed Wednesday ... 

 

And who says I am not living in the fog ...

 

Peace ... an apt description ... this "coating" ... the penetration is not nearly as deep as it used to be ... and ... the stuff is still hanging on ...

 

I am going to check google ... there must be a "Benzo Wash" out there somewhere ... maybe it will wash the coating off ...

 

For me ... a lousy night, a crappy morning, morphing into a yukky afternoon ... and it is snowing and blowing again ... 

 

[[ga...]]

I apologize for having to post some of what's going on with me.  I have no place other to vent at the moment.  My wife is just so frustrated with me.  I am letting the depression and hopelessness spiral out of control the last few days.  Early mornings have been the worst times and now it is starting to spill into the daytime hours.  She really believes I am doing this to myself and I just want to be miserable and alone in the future...self fulfilling prophecy she says.  I have heard this over the years at various times when I get down like I am at the moment.  Maybe there is some truth to it.  All I know is that sleep has been minimal to nonexistent the last three nights and I feel the hopeless feelings about what will be in the future...nothing good that I can come up with except more of this same pattern that I have become accustom too.  I feel like I'd be better off dead than having to go on like this.  That really scares me when I start feeling this way.  It just tells me I am in a low place and can't envision living the way I am feeling.  One positive is that I have always managed to come out of these periods.  It does get better but when I am mired in the middle of it...well that's a different story.  Thanks so much for letting me vent.....luv all the support from the kind people on this board.

[[La...]]

I apologize for having to post some of what's going on with me.  I have no place other to vent at the moment.  My wife is just so frustrated with me.  I am letting the depression and hopelessness spiral out of control the last few days.  Early mornings have been the worst times and now it is starting to spill into the daytime hours.  She really believes I am doing this to myself and I just want to be miserable and alone in the future...self fulfilling prophecy she says.  I have heard this over the years at various times when I get down like I am at the moment.  Maybe there is some truth to it.  All I know is that sleep has been minimal to nonexistent the last three nights and I feel the hopeless feelings about what will be in the future...nothing good that I can come up with except more of this same pattern that I have become accustom too.  I feel like I'd be better off dead than having to go on like this.  That really scares me when I start feeling this way.  It just tells me I am in a low place and can't envision living the way I am feeling.  One positive is that I have always managed to come out of these periods.  It does get better but when I am mired in the middle of it...well that's a different story.  Thanks so much for letting me vent.....luv all the support from the kind people on this board.

 

Garton, at 14 months out, my sleep has yet to fully recover. I, too, go through periods of little to no sleep marked by feelings of hopelessness and despair. Fortunately, I pull out and my sleep improves for a few days bringing back normalcy and good feelings, hope, etc. Only to oscillate back and forth between these states. In my case, I really dont thin "I am doing it to myself."

 

If I havent already recommended this to you, I strongly encourage you to read the book "Sound Sleep, Sound Mind by Dr. Krakow. He seems to have the most comprehensive and progressive understanding of sleep disorders than anyone else I have come into contact with. The book provides real how-to solutions for insomnia that dont involve any medicines or supplements.

 

It is profoundly insightful.

 

Have you broken through the "fear" of not getting enough sleep? Do you practice how to relax your mind during the day? To bring it down to that low-energy state required for sleep induction?

 

laser

[[ma...]]

Garton I don't know what to say other than know that you are not alone. I could not more accurately describe the way I feel than you did.  I unfortunately have not experienced this before and can only pray that I do come out of this.  I know I want to live. I know I want to be happy.  I know I want to get back to my old self and feel free to come and go without the fear.  I just can't make myself better.  It is like I can only sit in it and wait for it to pass.

[[Co...]]

Garton..I am a few days away from beginning month 16 and my sleep and depression sx mirror Laserjet's exactly....and I am seeing sustained improvement in the depression. I still wake up with the morning depression and it lifts completely within 20-30 minutes of getting up and outside with my dog. In no way do I think we ' do this to ourselves'...I have never.  ever had depression.  And certainly nothing that even looks vaguely like the bleakness of w/d depression. ...I also have learned not to fear insomnia...if I can't sleep I do domething...get up make some hot milk/honey...read if I can concentrate ( almost always now)...write on BBs.  listen to music.  I am tired the next day but never as terrible as I think it is going to be. I will however say that I am retired and have the luxury of being home on tired days. ...things are bound to improve Garton.  And venting on BB is such a good way to say what you are feeling when others can't understand..  because we know exactly what you are going through and support flows here like honey...I could not have done this without my friends here..  hold on Garton...we are here for you....coop

[[Sk...]]

I apologize for having to post some of what's going on with me.  I have no place other to vent at the moment.  My wife is just so frustrated with me.  I am letting the depression and hopelessness spiral out of control the last few days.  Early mornings have been the worst times and now it is starting to spill into the daytime hours.  She really believes I am doing this to myself and I just want to be miserable and alone in the future...self fulfilling prophecy she says.  I have heard this over the years at various times when I get down like I am at the moment.  Maybe there is some truth to it.  All I know is that sleep has been minimal to nonexistent the last three nights and I feel the hopeless feelings about what will be in the future...nothing good that I can come up with except more of this same pattern that I have become accustom too.  I feel like I'd be better off dead than having to go on like this.  That really scares me when I start feeling this way.  It just tells me I am in a low place and can't envision living the way I am feeling.  One positive is that I have always managed to come out of these periods.  It does get better but when I am mired in the middle of it...well that's a different story.  Thanks so much for letting me vent.....luv all the support from the kind people on this board.

 

Garton, why on earth should you apologise for coming here to vent ? We're not on FB where we have to flaunt our perfect lives. We are here because of our health, because of a terrible " medication " changing our brains and bodies. And it's so ok to list your symptoms or vent.

 

It's hard on our loved ones. But it's not you. At almost 16 months out, I have horrid moments in which all I can see is death and destruction. I cannot handle money and it takes me hours to write this post.  So  don't worry it's ok to complain here, every normal action in life has become ten times as hard, very hard, you would be nuts not to need to vent or not to feel depressed !

About your wife, try to show her some material. Show her Dr jennifer's blog, it's so informative,s how her the parts in which she talks about what the medication does to the brain.

 

Today, I was so tired from rinsing some clothes out,t hat was all I did. And after, I could barely walk at the supermarket, my legs would barely move and mr S ky would turn around and say " Come one, how  long does it take you ?"

 

And then, as we were queuing, my heart got out of control and I had never had it so bad in public. This is really a bad day, hope it gets better. it will, it has to, how could it get any worse ?

[[Lo...]]

Nova,

I think it's Wednesday. Though I dreamed it was Friday. What does it matter, just tells me how many more days I have to sit in this classroom in a fog. Oh, brain, how I miss you.

 

I've been trying to sort through my new state. At one time I was saturated with symptoms and now they sit on me like a coating, penetrating less, but still making it hard to move, breathe, think.

 

Time.

 

I never heard of sxs described like that! You're so right. I feel like I'm wearing a super heavy coat, it's just hanging on me...weighing me down!

 

I've had a rough few days with my legs (weak), balance, spasms and shortness of breath. I honestly prayed this morning as I stood and my legs shook. I asked God to please get me through this nightmare. Please...not my legs. It was hard but I made it to my son's daycare, then to thedoctor and now at work.

 

All of this is nuts! Praying for each of us!

[[ga...]]

Boy..... all I can say is you guys are GREAT!  So very understanding, which makes complete sense since we are all having to endure this.  So much good advice from so many.  So very helpful.  I am doing my best to get by today.  Had a massage and a good lunch out.  Of course, very tired but I will get some exercise of some sort this afternoon.  I hope my wife will show some compassion today.  She gets so very frustrated at times which I completely understand.  She wants to enjoy her life and not be with someone who has been on, and for that matter is still on this crazy ride.  I can see where she believes that I am not handling the lack of sleep along with the negative thoughts in a productive way.  As many have stated here....I have to take the emphasis off of  sleep being crucial. This is something I can do at times but not the past few days.  Sometimes I can downplay it at get along reasonably well.  I know the depression gets a whole lot worse when sleep deprived and that makes sense when you're not thinking clearly.  I have been told by my wife and therapist that I do HAVE control over my thoughts and that I can, using tools I've learned the last few years, keep the depression and anxiety at bay.  You can see where I start questioning myself when I feel completely out of control and unable to grasp the reality that things are not as bad as I make them out to be.  One day at a time and staying in the moment is critical.

 

 

[[Co...]]

Garton, my experience with w/d depression is that I really don't have much control over the depression. I can tell myself cognitively that I know it will end when the wave lifts. That does nothing for my feeling of suffocating under the weight of the depression. The only thing that helps me endure it is any distraction that I am able to sustain. Going outside and lavender Epsome salts hot bath soaks have been my best helps.. they don't change the depression but they help take my focus off of it momentarily. For me, it is awful until it lifts and it's not...It is what is is until it isnt. ...Now at the start ( almost) of month 16 I am having less and less mind crushing depression. I know it is not now a part of my permanent self because in a window it is completely gone.

.....It is hard for our family members and it becomes depressing to them too. Maybe you could try for awhile not expecting understanding alot from your wife .  just for a little while.. give her a complete break for a bit if you can and come here to BBS as much as you need to. There is almost always someone on the thread....

......Garton, don't be so hard on yourself for not reining in your thoughts.  Instead find some mindless distractions. I think Nova said it, and it has been true for me too.....the more you fight it the more you focus on it. I found that the only way I could get away from it was to watch hours and hours of short sitcoms. I haven't had to do that for awhile now...maybe just an afternoon here and there during a wave.I also spent hours and hours writing on BBs...somehow I couldn't focus on intrusive thoughts and write at the same time.. it helped me so much on my worse days.

.......I hope this wave lifts for you Garton.. it's a huge bravery that you have endured these long months of recovery.  .coop