12-18 month support

[[Gr...]]

Coop ... "today, my job is to heal" ... well, said ...

 

Don't know about the "master" part ... 

 

To "accept" what I have today is something I could do everyday ... and I mostly do ... and sometimes, as we all know, it is hard to maintain that focus ...

 

For some of us, when we see a dragon, we get all excited and off we go to try and wrestle with it ... and the outcome is pre-ordained ... the dragon gets pissed off and we get nibbled on ...

 

Always "safer" to admire dragons from a distance ... they are cute, but can be ornery ...

 

I have a soft spot for dragons which might explain a thing or two about my Wd !

 

I wanted to add one thing about the reactions of people around us to our problems. From what I read in the FB page of the TBI tribe, their complaints are not only similar to ours, symptom wise, but they also complain about the incapacity of people to "get" what is happening. Doctors as well.

 

Now, it seems to me that if you have had a car accident and have hit your head, people should understand that there is some damage where the brain is and some healing is required.

 

But they don't, they accuse these people of not snapping out of it, of pretending they are sick, the works.

 

It's really an eye opener. It's not just about benzo wd, it's about anything connected to the brain, seems to me.

 

This does not make matters better for us today, but it helps me to have a bigger  picture of a wider incapacity of society at large to understand anything connected to the ever elusive brain.

 

 

Coop, I am having a hard time breathing properly, was it you that spoke about breathing techniques ? Do you have any suggestions ?

 

Sky, the medical ppl accuse them of not snapping out of it?  Holy cow.  If ppl with TBI are getting that treatment, we're totally screwed.

 

I was riding my bike, drained, lol, and thinking about your article.  I had no energy to "go," and I was thinking about the diagram with the battery and how it doesn't charge up overnight -- makes sense because I wake up in various states of tired, never raring to go with that morning energy.  And then the diagram showed how quickly the energy is depleted, after not doing so much.  that sounds like me :'(  It made a lot of sense.  Of course it took me two days to process and remember the information :'(

[[Gr...]]

Hi guys,

Woke up today with no anxiety, but I cant move.. My muscles are so extremely weak all over my body that walking is too hard for me right now... Anyone on here ever get this sx?? I have had it on/off in the past, but today is pretty severe--everything aches, and feels tired and weak. Also, my feet hurt--it hurts to walk on them with barefoot, so I need to find some cushy slippers.. Feels like Im 85 years old today..  Hugs to everyone, Jenny

 

Jenny,

 

The severe anxiety like you've been having, and Coop has, for me that is usually directly followed by exquisitely painful muscles, aches and pains that are shocking.  And yes, the feet are too painful to walk on.  The body aches and stiffness are insane.  At my worst, I was unable to walk down the stairs.  getting in and out of the car was very painful.  as you said, moving slowly, like an 85 yo.  actually my 85 yo neighbor moves just fine.  this is like being crippled with pain and stiffness.  I always thought there was a connection with the extreme anxiety and cortisol rushes, because when they finally stopped, I'd get body pain.  And sometimes I get the awful fatigue with it, in fact, they usually go together for me. 

 

You really can't make this stuff up.  Who else could we tell this to? 

 

It should pass, gradually get better in a couple of days.  Feel better.

[[Co...]]

Green, .. yep...that was my whole job today.. just breathe and get to the next hour. .  I think tomorrow will be better.

    My daughter is stopping in for a little while before she takes off on a little trip to Alaska to see her friend next week.

    One more day in the books..  coop

[[No...]]

Coop ... gonna try the sleep thing again ... talk tomorrow ...

[[Co...]]

Sleep well Nova. 

[[Gr...]]

Hi Friends,

I wanted to share some of my posts from about 18 1/2 months out.  I copied these 3 from my old posts just to remind you of where I was at that time. 

 

"My body hurts, sometimes feeling like I have acid or poison coursing through my veins.  My sleep has slipped somewhat from where it was a few months ago, so I am very tired and have depression hovering over everything. Sometimes I shake like I'm cold, and have the tight band feeling around my head. I get some floaty boatiness also at times, along with mild to moderate DP/DR. My symptoms have changed during the last 6 months to more physical ones, which caused a spike in my anxiety...especially these last 8 weeks or so. My anxiety is calming down again as I get my test results back and things are "normal". I just feel SICK to various degrees."

 

"The one thing I keep coming back to is that I NEVER had anxiety like this before. Ever. That must mean this is all withdrawal, and if it's withdrawal I will heal. It's just a matter of making it through. That's what the experts and those who have healed all say, right?

God, I am so tired of feeling the need to cry all over this thread. I'm sorry....I'm sure you guys are tired of hearing me. This past month has just absolutely pulled the rug out from under me."

 

"Shell-shocked.

I think that's the word to describe how I feel today.  This past week has been one of the worst I have gone through in this recovery process, and the month of December has been the toughest since passing one year. I sure hope the conventional wisdom that waves equals healing is true!"

 

This is where I was back in January.  It was ugly and awful.  I felt like I certainly was regressing.  I felt so very SICK all the time.  I was pretty much convinced that I was dying, while going crazy.  My body hurt and was so very tight all over.   

 

But NOW?  I'm going on many weeks of feeling GOOD!    I have had some slightly wavy times, but it's nothing like it was.  EVERYTHING has calmed down....even my health anxiety that was through the roof.  It really, really DOES get better!  I promise.    You are so very close.....even if it doesn't feel like it.

 

Love to you all!   

 

HH, thank God for your journal-writing capacity.  Through thick and thin, you've tracked those symptoms, and this isn't the first time you've brought them out to help someone (me!)  that was back at around the one year mark.  Thank you, and keep feeling good, all the way to the success story!

[[He...]]

Thanks Jenny, COOP, Beulah, Nova, everyone!! 

 

Thank you HH!!  What a great few paragraphs to repost.  Makes me feel hopeful, very hopeful, the opposite of what I've felt all day today. 

 

Would you mind sharing with us anything that you are doing lately that feels effortless to accomplish?  How about laughing?  Does laughing and engaging in exciting upbeat conversation rev you up at all?  Even on a good day that is one of my biggest annoyances.

 

Hi Mike,

Pretty much everything is effortless now.  Laughing and being with people is something I love.  It doesn't cause many problems, but honestly it didn't really throughout my recovery.  It IS nice to be able to fully engage now, however, without always having benzo-withdrawal in the back of my mind at all times! The new things that I can do that are effortless are being by myself (2 weeks ago I was alone all of Saturday and I was comfortable and productive!), cooking dinner and cleaning after a day of work, going shopping (my husband did most of the shopping the past 2 years), watching TV (it used to cause me lots of anxiety), and working in my classroom after hours.  A biggie for me is feeling good during weekends! Weekends used to be awful for me with horrid anxiety, I think because I didn't have all the distractions of work.  I can now enjoy my weekends and I actually look forward to them.  Such a blessing! 

 

You will be able to have an upbeat conversation that is full of laughter soon, you really will. 

[[He...]]

I'm so glad that my writing has encouraged you guys!  I am going to start seriously thinking about writing a success story to put on the Success Board, but I feel like sharing here is where I want to be.  This thread has been a life saver to me many, many times!  I wouldn't have made it through this without you guys. 

No one left behind! 

[[Gr...]]

Coop,

 

in Baylissa's book, she had a little thing that I found helpful.

 

get to a quiet place.  Say, Unconscious Mind, I authorize you to do anything/everything necessary in order to make me feel better.  say it a couple of times in a row.  something to do with the mind having the power to make us feel better.  I thought it helped.  in my last wave I did it constantly.  it helped.

 

and then hold your ring finger of the opposite hand, just hold it, supposed to help with anxiety.  and holding the thumb is supposed to help with sleep.

 

Korbe,

You are very brave, very tough.  Plane ride, experimental treatment.  Wheelchair ride through the airport.  then edema and the ER.  You ain't no slouch, my friend.  You had to try.  You are going to heal.  We all are.

 

Everybody:  I'm mildly spaced out with DR, reading all the anxiety posts, afraid for the next go-round with anxiety, but knowing that it means healing and I probably can't avoid it.  All I have right now is headaches, the DR on and off, mild nausea and mild vertigo, low energy, low motivation, mood is mildly depressed.  And do ya know what?  I'm grateful.  In withdrawal, this is a walk in the park!  this is candyland!  Every one of you suffering with really bad symptoms tonight, you have my heart, I feel for everybody.  Feel better, let's get through this already!

 

 

[[Sk...]]

I am so sorry about everybody's suffering yesterday. I couldn't even make it to the board.

 

Today, I' m feeling better but I have to say, I am discouraged.

 

Over at the TBI facebook page, I found this table. it's about the stages of healing, it reminded me of what Nova talked about.

 

Hope somebody finds it useful.

 

http://i60.tinypic.com/20f94yx.jpg

 

Where would you say we are now ?

 

Yesterday, I took my two naps and still felt so tired and sleepy. I have this thing, I think Nova talked about it too, that when I am about to fall asleep, I feel like this sense of vertigo, as if I were falling. Quite unsettling, it usually startles me awake.

 

I have beeen taking some walks before breakfast, I walk very fast for about 4.5 miles. It is hard for me, my muscles ache a lot and walking, in itself is hard, let alone at a brisk pace. 

It feels so nice though to be walking in the morning breeze. Makes me feel accomplished,c an't say why. I usually get back with a clearer mind and brighter spirits. 

 

I am going to have lunch, speak later.

 

Coop, NOva, MIke so sorry you went through such a bad day yesterday.

 

HH, thanks so much for taking the time to post and share your past posts, they were so helpful. :smitten:

[[be...]]

Morning all

 

Sky, glad you're feeling a bit better.

Interesting graph...I think we all can relate to all of the emotions.

 

Does anyone on here take or has taken a decongestant without any bad side affects?

 

Hope everyone feels better.

[[Co...]]

Hi Beulah.  Just be careful to take the ones that are safe for b/p even if you don't have b/p problems. I think most of them have antihistamine that can raise b/p.  Some can make you jittery. The guefeson that is prescribed by the doctor can make you drowsy. A lot of studies say they are not greatly helpful.  I would try hot packs to your face and sinus areas and drink a ton of fluids. ..

  .Are you all congested up from your bronchitis? .. Hate that feeling of a congested head.. Hot showers/baths etc.. you know all the tricks we did for our kids when they were little. I hope it lets up for you. Other than the congestion how are you doing?.  In spite of your bronchitis you are sounding so close to being done.  .So happy for you. Have a really good day..  coop

[[No...]]

Beulah ... decongestant ... to chicken to even try one ... have gotten some temporary relief occasionally with a saline nasal spray ...

[[No...]]

Good Morning ... Afternoon ... or Evening ... (that about covers the planet) ...

 

Got 3 or 4 hours of broken sleep ... in about the same place I have been the last couple of days ... went out for about 4 hours and meandered around ... legs did not want to do it but they couldn't go home on their own so they stayed with us ...

 

You know, a lot of this feels almost like the bad days of tolerance ... kind of strange ... not like the revving days of acute ... oh well ...

 

Sitting on my duff now for the rest of the day ...

 

[[Fi...]]

Sky--interesting chart.  I feel like I've been through all the stages and have arrived at the very last....except for one thing...

I'm still not completely well!

 

Beaulah--I've taken Musinex to avoid having a cold go into a sinus infection during this and didn't have bad effects.  But then, I seem to have been spared all the sensitivities to lots of things others seem to suffer, so my experience is no guarantee.  I did wonder a couple of weeks ago if something in urinary pain med I took for a UTI had set my heart off into alarming tachycardia after not having any problems at all along those lines for weeks.  I posted this question elsewhere but got no replies.  As  for nasals sprays, I stick to the stuff that's strictly saline, nothing else in it.  It was actually a doctor who warned me away from the others--shockingly, some can become addictive.

 

I'm really sorry to see so many here still having so much trouble, and I really hope somebody can follow HH in coming back with a healing story.  HH was the reason I joined the board.  I thought I had encouraging evidence to give her and I guess I must have thought I was closer to being healed than she was.  Not so, obviously!

 

HH--you're a sweetheart to come back and report from the land of the living.  I was disappointed to figure out recently that my real life friend who introduced me to the BB board never actually came back and posted a success story.  And she is 100% healed.  I just can't picture withholding that comfort from others if you've got it to give.  I completely get wanting to move on and having better things to do than commiserate on-line all day long, but clearly people cling to those success stories.  I look forward to watching everybody else here heal and post their stories too!

[[Co...]]

Nova, that's it exactly...living tolerance and early acute all over....what a mean trick. Now I am pissed as hell and doing whatever the hell I want to...I am sick sick sick of 'waiting' to get better. It hasn't killed me yet so I am trying to do some things 'no matter what'.  Like you say.  Your legs can't go home without you and my anxiety just has to do what I want to do not what it wants to do.. I hope I can stay mad for awhile I am so tired of being afraid

....Goid for you Nova.  4 hours is alot. .I am going to go to the grocery with my daughter this morning and 2 would make me happy. I got the dog out for a nice walk in the wind.  We had an earthquake of all things about 50 miles north of me ...last night...just a little one 4.1...but very wierd for Wash/Idaho...the times they are a changin' ...carry on Nova...coop

[[No...]]

Coop ... a little earthquake ... hmmm ...

 

Stay feisty ... have a good outing ... 

[[be...]]

Nova, coop and FJ...thank you .

 

Nova, I am also scared to try something..because I'm so sensitive to so many things.

 

I was thinking about the machined ..I don't know.

 

Yes coop, I have congestion and fluid in my ears, I need to get the fluid from the ears..they are hurting.

 

I can't take anything with antihistamines..causes to much excitement in me.

 

I have heard of people putting garlic cloves in the ears to draw out fluid...I just don't know.

[[Mi...]]

Pseudoephedrine I cannnot take.....has always given me anxiety.  I think the only other option for a decongestant is Phenylephrine, but it doesn't work very well compared to the jittery stuff. 

 

The doctor gave me an inhaler, and a liquid script of Codeine/Guaifenesin for my bronchitis last week.  My lungs felt 80% better the next day after only taking 4 doses the day before.  I was taking Mucinex for days and days prior and it didn't help one bit.  Guess the Codeine helps clear things out better?  No clue, but just to mention, I was apprehensive taking a narcotic but the Codeine didn't have any ill effects. 

 

So, today is a new day.  Good Afternoon everyone!  It was so healthy to be on the boards a bit last night.  Today is far from perfect but WAAAAAY better than yesterday thank god.  I actually know what's going on around me and I'm not fatigued finally.  (Funny because two nights ago I slept 8 hours and felt like death; last night slept 4 hours and feel way better, duh!)

 

Taking little Mike to an indoor bouncy house/jungle gym type birthday party place in a couple hours.  20+ screaming kids should keep me nice and calm. 

 

Wishing you all a great day

[[be...]]

Pseudoephedrine I cannnot take.....has always given me anxiety.  I think the only other option for a decongestant is Phenylephrine, but it doesn't work very well compared to the jittery stuff. 

 

The doctor gave me an inhaler, and a liquid script of Codeine/Guaifenesin for my bronchitis last week.  My lungs felt 80% better the next day after only taking 4 doses the day before.  I was taking Mucinex for days and days prior and it didn't help one bit.  Guess the Codeine helps clear things out better?  No clue, but just to mention, I was apprehensive taking a narcotic but the Codeine didn't have any ill effects. 

 

So, today is a new day.  Good Afternoon everyone!  It was so healthy to be on the boards a bit last night.  Today is far from perfect but WAAAAAY better than yesterday thank god.  I actually know what's going on around me and I'm not fatigued finally.  (Funny because two nights ago I slept 8 hours and felt like death; last night slept 4 hours and feel way better, duh!)

 

Taking little Mike to an indoor bouncy house/jungle gym type birthday party place in a couple hours.  20+ screaming kids should keep me nice and calm. 

 

Wishing you all a great day

 

Yeah, that's what they gave me. An albuterol inhaler and wanted to give the codeine syrup but it makes me itch, and he prescribed amoxicillin...it was taking my gut out..had to stop it.

 

My doc thinks I'm a big baby because most of the stuff he wants me to take I have to turn down.

He will just have to get over it...he's ignorant of withdrawal and I have to do what I have to do.

[[Co...]]

Beulah...I sent you a post about 'swimmers ear relief'.. They are inexpensive non-medicine ear drops that swimmers use to dislodge fluid trapped in the ear. It is sterile saline and a drying agent. You put a few drops in one ear...lie down for 15 minutes on the side of the same ear. Repeat on the other ear. I have had goid luck with it. It may not unplug all of the congestion in the ear but it will help drain the fluid as the congestion loosens...hope this helps.  coop

[[Co...]]

Beulah...sorry the first post didn't send...hope you are having a good day....coop

[[Co...]]

I really hesitate to commit this to writing, but I think K I am getting a break from the excruciating anxiety...it just sort of lifted...3 straight weeks of anxiety and panics.. maybe...just maybe this break will hold for a little while. Other than new tinnitus I think other sx are tamped down as well..

....I hope everyone else is having a better day as well. ...coop

[[be...]]

Beulah...I sent you a post about 'swimmers ear relief'.. They are inexpensive non-medicine ear drops that swimmers use to dislodge fluid trapped in the ear. It is sterile saline and a drying agent. You put a few drops in one ear...lie down for 15 minutes on the side of the same ear. Repeat on the other ear. I have had goid luck with it. It may not unplug all of the congestion in the ear but it will help drain the fluid as the congestion loosens...hope this helps.  coop

 

That would be wonderful...sounds just what I need!!

[[be...]]

I really hesitate to commit this to writing, but I think K I am getting a break from the excruciating anxiety...it just sort of lifted...3 straight weeks of anxiety and panics.. maybe...just maybe this break will hold for a little while. Other than new tinnitus I think other sx are tamped down as well..

....I hope everyone else is having a better day as well. ...coop

 

 

 

Wonderful news!! Keeping my fingers and toes crossed.