Rosetta: cold switch May 2011 & too fast taper Feb 2017

[brassmonkey]

Hi Rosetta-- I can't remember if I told you about the "Silver Suit" meditation.  If I have please reread it, If I haven't let me know and I'll tell you about it. I think it could be very useful for you.

[Rosetta]

Hi Brass,. I did a search for silver suit and I didn't find anything.  I would like to hear about it.  @brassmonkey

 

I am better today.  I'm surprised that did not last more than a day.  

[wantrelief]

So glad you are feeling better today, Rosetta!  🙂

[Carmie]

Glad you’re feeling better Rosetta.💚

[MikeysMum]

Hey Rosetta I just wanted to say hi and thank you for your posts. You write with such clarity. I'm only 4 months into WD from a much too fast Paxil tapering. I can really relate to so much of what you've described. I have the most awful cortisol spikes very early mornings and then the days are so long without adequate rest. My other main problem is nausea, lack of appetite and bowel issues. Drs keep looking for answers (gastroenterologist now wants me to have Cat Scan) which then adds more fear. I have a 21 yr old daughter with a disability who really depends on me to 'be there' for her and she has suffered because of all this. So I can relate a little bit to the issues you have with parenting. Big hugs to you. Your writing has helped me clarify some of my own issues. The anxiety and fear which I'm experiencing and never ever had before WD are terrifying. Hang in there. We will heal one day at a time. You have come so far and experienced so much. Xxxx

[thecowisback]

hope you're still doing better rosetta xxxx i wish i'd have known before i stopped the meds just how much fear i would experience. no-one in the medical profession has any idea of how terrifying our thoughts become when we withdraw. i have never experienced fear like it in all my life and probably wouldn't have believed anyone if they'd tried to explain it to me. it's fear of the most random things too. fear of the present, fear of the future, fear of the past. keep up the fight xxx

[Rosetta]

I'm back to feeling that I can't go on another minute.  Going to bed was hard.  There was a lot of Akathisia and aching that made it hard to sleep.  My daughter couldn't fall asleep.  I woke up a lot in the night.  

 

I woke up this morning more or less ok, but the dystonia intensified after  I woke up,  The fact is that getting my child to school is something that is simply impossible with Akathisia and fear .  It's ridiculous.  One of her library books is missing.  I am so sick of the school putting all this responsibility on a 7 year old.  I was never allowed to take library books home in second grade.  There was a reason for that.  Over a break?!  Of course it's missing!  

 

The final straw was that the cat peed on my laundry.  Why do I have to discover that before my daughter left for school???!!!!!  I completely melted down.  I cannot stand it that my daughter sees me cry and scream out of fear and pain.  Now my whole face is so tense it feels as if it's on fire.  My neck feels as it is might break if it gets any more tense.  What is this doing to my child???!!!!  I try to control it.  I try so hard.  I tell myself to calm down, to stop, to just hold off until she's at school, but the stress of getting her there is the catalyst.  Having library today as we are starting on a Tuesday instead of Monday and the cat peeing on our clothes.  It was too much.  Maybe the book missing alone would have been ok.  Maybe I could have held it in.

 

Yesterday, we spent the day at a theme park with another little girl and her mother.  We had a lovely time.  I was so happy that despite the way I felt Sunday I was able to make it out of the house for that yesterday.  It was hard to get going .  I didn't want to as I felt bad.

 

I keep hoping every time we have a day like that this is is over for the most part.  It's all in vain.  I just wish I had never been born.

[wantrelief]

Oh Rosetta, I am really sorry this morning has been so horrible.  Someday this really will all be over....it is just so beyond difficult in the meantime.  Hold on to all of the positives you've been experiencing lately....they really are signs that healing is happening even on these days where it doesn't feel like it at all.  Lots of love and hugs, WR.

[marconyc]

Very sorry to hear you're going through a rough time @Rosetta This is so hard. I'm going through withdrawal and I'm on a HIGHER dose of sertraline than I was before I tried to taper. I keep trying to have faith that we will all one day write our success story. Hang in there.

[thecowisback]

i feel for you so much rosetta! this is exactly how i am - i'll push out when i need to do something with the kids and end up having a lovely time despite everything that's going on, then i have a 'hangover' the next day as i'm tired mentally and physically. you need to be kind to yourself and tell yourself how well you did going out. the book will turn up when you're looking for something else. the laundry is a pain but it's just laundry and it can be done again. just give the cat the stink eye for a couple of days. one of our cats peed in our bed after i'd been at the hospital all day with a family member. i was exhausted and looking forward to lying down for 10 minutes then found the bed was awash with pee. i lost the plot and would have strangled the cat if i could have got hold of him (not really, but that's how i felt at the time). 

be prepared to be out of sorts more than usual for a couple of days and don't let it put you off doing something nice again. all these outings are part of our healing and we have to learn to take it easy after we've done them. one day we'll be able to do these things without even thinking and we will look back and see how far we've come. 

explain to your daughter why you're tired and cranky. she will understand. i give my anxiety a name and tell the kids that my 'friend' is kicking round with me when i'm feeling rough. that makes them laugh and diffuses the fear for me a little too. my youngest has named her anxiety too and keeps a picture of her on the wall to remind her that her anxiety is trying to keep her safe and isn't there to hurt her. xxx 

[brassmonkey]

Hi Rosetta--  here it is.  I also posted it on my thread "Tao of the Brassmonkey" for other people to find.  Give it a try and see if it helps.

 

Silver Suit Meditation

 

I've noticed lately that a large number of members have been getting very stressed by the things that are going on around them that then can't control.  The crowds when out shopping, family gatherings, school meeting and the like all present times where a person needs to interact, but can be over whelmed by the energy level of the situation. This is the second meditation I teach people when they are serious about doing psychic work.  It is for shielding oneself from overpowering energy and is very effective with  just a little practice. It's called the "Silver Suit".  It is like a space suit that protects you from the overload of emotions that are going on around you, but still allows you to operate at full capacity.

 

You are standing in the middle of a desert of negativity, you are naked and the hot winds of emotion are hitting you from all directions.  Beside you on the ground lies a shiny silver space suit.   It is a one piece jumpsuit.  Say to your self  "I'm going to put on my Silver Suit".  Slowly you slide your foot into one of the boots, the fabric feels cool and you foot slides in easily.  Now you slide in your other foot.  The ground starts to feel very solid below you.  Bending down you start to pull one leg of the suit up and then the other.  It feels cool and reassuring as it slides over your skin.  It fits perfectly as you pull it up around your waist.  You can feel a cool strength coming from it as the heat of the emotions starts to drop away.  

 

Reaching back you slip one arm into the arm of the suit, then the other.  Pulling the suit around you, you can feel the negative emotions dropping away.  Pulling the front zipper closed you enter a cocoon of protection.  There is a helmet sitting beside you.  Picking it up you place it over your head.  It slides on comfortably and and snaps in place around the collar.  Taking a last look at the desert outside you reach up and snap the visor closed.  All the negative emotion around you is now being reflected by the suit and can  not affect you.  The suit will stay in place until it is no longer needed and then disappear. When you feel the need for it again just slide it on for full protection.  With practice just saying the words "I am putting on my Silver Suit" will cause it to appear around you.

 

This is the bare bones of the meditation.  It is very easy to fill in details of putting the suit on, the feelings and sensations.  It is best to keep the whole thing fairly simple so that each time you preform it you can do it the same way.  Always start with the phrase "I'm going to put on my Silver Suit" this is the key phrase.  It should work from the first time you try it and will grow in effectiveness the more it is repeated.  After a while just saying the key phrase will start a subconscious reaction of putting on the suit and you won't even have to do the entire meditation.

[Carmie]

I’m so sorry you’re struggling so much Rosetta, 

 

Sending lots of hugs 🤗🤗🤗

[neroli]

Hello Rosetta

 

Sorry to hear you are feeling so awful: 

16 hours ago, Rosetta said:

I just wish I had never been born.

 

You always have a way of saying and writing so beautifully responses to other people to give them a pick me up, so I'm quoting back to you something you wrote on my thread not long ago and it was such a comfort to me:

 

"While I am in a wave I can't see any reality outside of the one I am experiencing at that moment.  I can't remember or believe that I will get better.  Once the wave lets up I can.  Otherwise, I'm just distracting myself from my reality in order to get through.  I need someone to say to me: You will get better.  You will get better.  You have before; you will again."

 

You will get better.  You will get better.  You have before; you will again.

 

Things do change and tomorrow could be a whole lot different.

 

Warm wishes - we're hanging in with you

 

Neroli 💜

 

[Rosetta]

Thank you @wantrelief.  (This feature isn't working.)  Thank you @Carmie @neroli @neroli @wantrelief.   @thecowisback @ marconnyc. ( I can't tag.). 

 

Brassmonkey!!!  Thank you for caring, and for the silver suit meditation, too.  So kind of you, Brass. 

 

 I did get better last night.  I went to gymnastics although I felt very irritable and achy.  Today, I had to go on a field trip in the morning and to talent show try outs in the afternoon, and then an impromptu play date.  I'm exhausted, but given how horrible I felt yesterday morning . . . That I go through this day is remarkable.  I enjoyed the museum, and I wasn't miserable the rest of the time.  I'm yo-yo-ing.  It's hell.  The depths are so deep.

[neroli]

Hello Rosetta

 

It sounds very difficult to be yo-yoing to such depths - I feel for you but also know that you are strong.

 

I'm glad you had a better day and were able to go to all the events - and even enjoyed some of it - truly remarkable.

 

Wishing you more stabilisation and ability to do all that you do (which is a lot).

 

much love

 

Neroli 💜

 

Thank you for your nice comment on my thread.

[Rosetta]

I'm in an absolute rage right now.  I have spent the last 7 months teaching art to my daughter's class.  Twenty-four kids who don't listen, talk all the time, and can't focus for 5 seconds.  It's exhausting.  I buy the materials.  I try to figure out how to teach them techniques or at least expose them to concepts such as perspective and color wheels and drawing.  The art show is tonight, and I don't think I have ever been so mortified.  

 

There is another woman who trades off teaching art with me because she wanted to teach in her niece's class.  She does crafts -- like gluing things to paper plates or cotton balls to paper to make a bunny face, etc.  That's fine, and anything that gets the kids occupied so the teacher can have a break is good.  My daughter's school has no art teacher -- at all for any class despite the fact that my property taxes are $6,000.00 a year!!

 

The art show to which all the parents from all 6 grades -- parents to 600 students -- are invited is tonight, and what did someone choose to put in the show?  A yellow paper plate glued to a piece of construction paper with sunflower seeds glued to the plate and foam leaves glued to the stem.  All the other parents are going to think that is what I have been "teaching" second graders to consider art.  I can't even show my face over there. All the other second grade classes are going to see that juxtaposed with the art those classes did.  All the teachers will see it.  The parents who teach art are going to see that.  I am mortified for anyone to know I teach art to her class.  That's the BEST project they did all year?!!!

 

No one even consulted me on my opinion of what was the best.  My husband went over there to take pictures to try to show me that the other classes did nothing any better, but I went to the art show last year.. What my daughter did last year when there was no art teacher at all was real art that several of the parents helped them create one day.  I wasn't even told when the art show would be or given chance to have any input at all.. I found out about it because a sign put out on Monday morning announced it was this Friday.

 

Even if the piece was one that showed the kids' creativity and skills through the display of the pieces, I would not feel embarrassed, but looking back I can't think of anything the other woman provided that had any of those attributes.  

 

None of my projects was ever displayed in the classroom until just last month.  The teacher asked me to lead a class on self portraits to be put up for the open house night.  That's the first time I ever saw anything I taught them on a wall.  It finally dawned on me that the other art teacher was being allowed to decide what was "backed" (glued to a piece of cardstock) and put on the walls.  I presume she's the person who decided what would go in the art show, and no one questioned her.  

 

I feel so angry.  If she wanted her project in the art show then why didn't she lead a class that involved the kids actually drawing something themselves or painting or SOMETHING so that their creativity and imagination and skills could be shown??  My husband suggested that she doesn't even understand that those things would be important in an art show.  I can't understand why this was allowed to happen this way except that the teacher for my daughter's class was given short notice and delegated to this aunt of the other student the responsibility of choosing pieces for the show.  She volunteers in the class on Thursdays, and she probably chose the paper plate project yesterday.  

 

It's been irritating enough that my daughter has been having art lessons wherein she is gluing stuff to paper plates and construction paper every other week as "art."   I have been there every single time as the assistant when I'm not teaching.  I have had to watch this and help to facilitate this every darn week despite feeling like death warmed over sometimes, but this fiasco of a Kindergarten level craft project being in the art show really takes the cake.  I'm angry, I'm humiliated, and I feel so disrespected and unappreciated.  I'm sure no one thought about how I might feel about this, but that's just it, isn't it?

[Rabe]

Hi Rosetta....I have so been thinking about you.  I have tried to catch up on your thread as best I can right now.

I was SO happy to read about the family time on the couch and all the detailed things and events you have been doing that require so much energy both mentally and physically....the breakthroughs you have are SO exciting, offer SO much hope, and show SO much healing.  

It is so easy to forget how well you have been doing when the waves return....I just wanted to remind you that you have been actually dealing with things you could not even think about months ago.  That is incredible!!!

As far as the art show....I am SO SO sorry that happened...that they chose something not indicative of what you had been doing...that would be VERY frustrating given all the time and effort you put in to it much less just the getting there and dealing with the kids in the midst of WD!  Not being recognized for such a huge huge amount of time and effort would be upsetting.  

What I feel is that the kids know what you did and you know what you did and I believe the kids share the experiences you shared with them with their parents.  Kids just do that.  It surely doesnt make what they did in the art show right...that was unkind and not thoughtful.  Who knows what was going on...who made the decisions and why...there always seem to be streams flowing that we are not aware of.  FACT is you gave those kids all your time and effort and great projects that they wont forget and your daughter wont forget.  I hope that you will be able to hold onto that.  If you still feel upset perhaps you could go in and talk to someone at the school about it...just tell them how it felt to have none of your projects displayed.  

I just believe that you have been recognized is ways unseen by the children...they wont forget what you did for them!! Love and hugs my dear friend!!💜

[neroli]

Hello Rosetta

 

That's so upsetting about the art show.  I think it's horrible that you weren't involved in the planning and curating - I can imagine how angry you feel about it.  So sorry.  It sucks.  Especially after the great work and effort you have put into it even in WD.  Small comfort, maybe, but you can give yourself credit for the talent, commitment, time and mega-effort you have contributed to art education for those children despite not being well.

 

Neroli 💜

[Rosetta]

Journal:

 

I'm depressed and angry and anxious. The anxiety is moderate, and the depression is moderate.  The anger is pretty strong, and it alternates with a feeling of resignation.

 

I can't read or write today without intense muscle tension.  My neck, face, scalp, jaw and shoulders are tense -- on both sides not just the right.  It's better when it's balanced on both sides.  There is only a slight twisting feeling in my neck.

 

I have been feeling a lot of anger the last few days.  When I woke up in the night I felt anger instead of fear or anxiety.  I believe anger is caused by fear and anxiety, but the emotion I felt was anger -- really intense anger.

 

Yesterday was very, very bad.  We had planned a little birthday party for my daughter with two of her preschool friends.  I had a very strong melt-down in the morning while trying to get ready.  I cried for an hour because my husband wanted a particular room vacuumed.  He backed off when I said no, but that didn't help me.  My guilt and shame and frustration boiled over.  He was so disappointed and annoyed that I didn't want it vacuumed.  He can't hide that.  I started to cry and ask why he couldn't understand.  That made him more upset, and I became more upset.  

 

Sometimes my husband surprises me by being so unaware of my limitations.  He had someone come to clean the house.  It had been months since the last time.  We needed that, but I couldn't prepare for it.  I felt terrible all this week.  Emotionally and physically -- angry, in pain from muscle tension, joints aching, anxious, tired, poor sleep, etc. The art show was on Friday night, and the anger over that was very intense.  It used up all my emotional energy that day much like Akathisia uses up all my physical energy.

 

Having someone clean is extremely stressful for me in any event because this person moves my things around.  I need to have everything picked up and put away before she arrives.  (And I can't do that.)  Otherwise, she puts things "away," but her idea of away could not be more different than mine.  I really don't have a place for most things because we moved into this house about 7 months before my baby was born, and my Celexa was switched to Zoloft.  My brain hasn't been able to organize well since.  In addition to brain fog, the change in meds caused some sort of acquisition disorder.  (It would be fascinating if I wasn't the suffer of this lovely chain of events.)  Recently, I read about a dopamine agonist used for Parkinson's disease that causes a gambling disorder.  The gambling disorder threatens the financial condition of the patient, and the doctors discontinue or reduce the dopamine agonist.  Then, the patient develops DAWS - dopamine agonist withdrawal syndrome which is nearly identical to what SA calls ADWD for short.  So, I had suspected that this acquisition disorder - hoarding, collecting, whatever intensity it may be -- could have been caused by the Zoloft which somehow affects dopamine in certain people and at the higher doses is more likely to do so.  My dose was increased from 10 mg to 150 mg over several years, about 4 years, after my baby was born.  So, my house is full of stuff and that makes organizing and purging much, much harder.

 

To get back to the catalyst for my meltdown: After the person leaves things are missing for days or weeks or who knows.  It's very difficult for me that she doesn't clean under something and put it back although I'm sure that would be difficult with all the clutter.  I have very limited short term memory.  I had a very good memory before I started on Celexa.  Afterward, I became very scattered and confused.  My short term memory is starting to return, but it's quite unreliable.  I may not even know something is missing until I need it.  Often I find it in a cupboard weeks later.  "It" happened to be sitting near the cupboard.  So, she put it behind the closed door of the cupboard.  For me, it's gone.  I have to buy another.  It's really like being a blind person and someone moves my things.  I have no memory of where I left anything.  It has to be out in the open or it doesn't exist.  I have boxes and bins all over the house in hopes of organizing all this stuff and getting it put away or given away.  I get a little done, then I get overwhelmed and have to quit.  The boxes and bins sit there for weeks while I'm struggling through a wave.  She will put anything on the floor into the nearest box or bin.  This went on for a few months until every box was full of a mix of stuff that had nothing to do with any other.  All my attempts to organize were lost over and over again.  The anxiety and frustration this provoked every time she came was too much.  I quit having her come here.

 

To top it off, she can't see any better than I can so I can't let her vacuum certain rooms.  My daughter has her Legos (tiny, tiny pieces in the girls' Lego sets) all over one room, and the thought of vacuuming that room fills me the most extreme anxiety.  These darn sets are so expensive, and there is almost no way to replace anything except to buy a new set.  I wish I could vacuum the room myself, but I can't stand the vibration and noise.  All I can do is go over the room on my hands and knees and find these little pieces before the vacuum comes.  Well, I can't do that either.  It causes too much anxiety.  Once in a while my brain lets me do that, but not the week before a birthday party.

 

My husband doesn't understand this.  He doesn't care if a $50.00 Lego set is ruined.  He doesn't care if a $100 Lego set is ruined.  He doesn't care about much of anything.  He even jokes that he wishes the house would burn down.  That makes me so angry.  

 

My life has been nothing but loss.  I lose everything that is important to me over and over again.  Now, I've lost my mind.  So, he expected that room to be vacuumed yesterday morning.  I feel so guilty that I can't give him a nice house.  I feel so guilty that I can't clean the carpeted room myself.  I feel like a massive failure every single day.  The only way I can let someone else clean that room is if I had been able to rescue everything from the floor beforehand.   So on Sunday morning as I'm trying to get things put away before the cleaner showed up he indicates that he wants that room vacuumed.  It's too much for me to rescue everything -- the stuff on the counters, the stuff on the table, the stuff on the wood floor AND that carpeted room?  I can't do it.  No one does it for me.  All I can do is close the doors to that room and say no vacuuming.  It's the only way I can cope with having this person in my house.  There will be enough that has gone missing as it is, and I won't even know what is missing.  This time, I came home and all the clothes that were draped over a chair had been put into a laundry basket with dirty clothes and taken to the laundry room.  I walked into the room, and they were gone.  I guess this person doesn't drape clothes over chairs or doesn't know what that means or I don't know.  I wish I didn't drape clothes over chairs myself, but I just have to get by and survive everyday however that looks.

 

So, instead of packing carefully for the trip to my MIL's and remembering everything important I was crying for about 45 minutes and upsetting my daughter the morning of her birthday party.  We got down there eventually, but the Airbnb tenants who had been there last week - for some reason I cannot fathom to save my life -- had turned off the refrigerator!!!!  The ice cream cake that my MIL had put in the freezer that morning melted all over and the candle/cake ritual was a mess, and no one liked the cake.  I put it down the garbage disposal.  As we were getting ready to go to the amusement park I realized that I had left our passes at home.  They expired that day, and it was going to be our last time at the park.  

 

I just cried and cried and cried.  It was awful.  I simply cannot function.  I can't live a normal life.  I can't plan and execute anything.  Some days I can, but when it's important and it matters I have no security that I will be able to come through for anyone or anything on a particular day.  A huge part of my anxiety is not knowing how my brain is going to function from one minute to the next.  Will my emotions overwhelm me?  Will I yell or scream at someone? Will I cry?  Will I forget something important? (Will I stop at a green light?  Will I wait for a stop sign to turn green?  I do both every so often.  I have no idea when.)  I never, ever know.  Even if I wake up feeling ok will I suddenly panic because some says something to remind me that my brain doesn't work and it hasn't worked in 8-10 years if not longer?

 

The positives:

 

I do have to admit that there is less dystonia and less aka.  I have whole days when there is no aka.  I probably have several days at a time with no aka.  I'm feeling so pessimistic right now that I can't say for sure.  

 

I am able to do more, to do things more often, and ocassionally I can do something without having a meltdown before during or after.  Having no idea when it will be safe to try to do something is very, very demoralizing.  Being required to do something because of a holiday or some school event is often the catalyst for a meltdown.  Whereas it used to be a near guarantee that I would melt-down now I actually get through some days without a lot of trouble.  So, that's proof of progress.

 

The word "frustrating" is not adequate for describing this experience.  I have realized that a window can be when my symptoms change even if one symptom replaces another.  I call that a dirty window.  The fact that one symptom lessened or subsided is proof that the brain has repaired something.  That repair may cause another symptom.  

 

Maybe I'll get out of this alive, but I often wonder if that's possible.  Even if I do what damage will my daughter have suffered? My husband?  The strain is really intense on both of them.

 

I planned a birthday party for next week for my daughter's school friends.  I'm not looking forward to it at all.  I wish I had not planned it.  It's just too much for me.

[RichT]

Dear Rosetta,

 

i’m so sorry you had such a terrible day. It must have been awful.

 

I’m glad there are positives in your life - and it’s great that you can see that. I hope the good things continue and grow.

 

with warmest wishes,

 

R

[Rabe]

 

You are way more capable and anchored than you feel today. To be so acutely aware of all that happens and all the feelings before, during and after, and to be able to share it all so succinctly, and write so much so clearly...its always amazing to me.  

I hope you are able to know you always do more than the best you can in the moment though it may not feel that way right now.

Mostly I wanted you to know that you are accepted, you are respected, you are valued, you are a gift, and you are dearly loved.  Love and hugs my dear friend!  

Hoping this wave subsides soon!!💜🦋

[Rosetta]

Thanks for being there everyone.  Today was a lot better.  I guess I'm at the top of the yo-yo cycle.

[Rosetta]

Today, my daughter got me up at 6:15.  I usually get another 1/2 of sleep.  I was awake for several hours in the night, and I fell asleep after first light.  The notable occurrence is that I was able to go back to sleep after getting her to school.  I woke up at 11:00.  This is quite unusual.  Normally, I would have no hope at all of sleeping again.

 

I have had many daytime sleepy periods lately.  "Many" as in perhaps 5-8 over the last 3 months.  They usually happen around 12:30 or 1:30 p.m. -- right about the time that I have to stay awake to pick up my daughter.  It's very rare that I can sleep after that, but one day I did sleep in the late afternoon/early evening.  On Monday, April 22nd, I was at my MILs, and I fell asleep sitting up in a chair with everyone there.  It was bizarre.  I had no control.  My chin was on my chest like a very old person.  I woke up eventually, and then I tried to go to sleep again on a couch upstairs, but it was broken, unpleasant sleep.  It felt as if there was something quite wrong with my brain that day.  

 

I think that bouts of Akathisia exhaust me in the normal sense of the word, but they also do something else.  Perhaps it's a coincidence, but when I have a meltdown (get very upset, cry, feel overwhelmed and afraid, experience SI, anticipatory anxiety, impending doom, and agitation) I often, but not always, have a feeling of extreme fatigue and deep depression afterward.  Sometimes, I sleep later that day or the next at a time that has not been "allowed" by my brain since the CT/rapid taper.  I don't know whether this is a good thing if it happens suddenly and in socially unacceptable circumstances.  

 

I do think being able to sleep this morning is a good sign that the cortisol issue is starting to resolve.  There have been a few random mornings when I was able to "sleep-in" meaning sleep until about 7:30 or 8:00.  Maybe these would be more frequent if I didn't have a young child.  It's very hard to tell.  

 

It is more frequent now that being awakened by someone or something else feels more natural and very unpleasant in the way it has throughout much of my life -- I feel groggy, gut-punched, chest pressure and head pressure.  I want to go back to sleep and I COULD if not for whatever obligation or pleading from my daughter that might be occurring.  Throughout much of the time since I CT'd if something woke me I would be wide awake with a pounding heart, racing brain, terrified and with no hope whatsoever of going to sleep again for 16 hours or more.  Of course, that was also how I woke up naturally, too -- with a huge adrenaline rush.  What Im saying is that the adrenaline rush has been a problem every time when I was awakened by an outside effect even as I had some days --more and more days -- that the rush didn't appear upon a natural awakening.  Now, Im capable of falling asleep again --sometimes -- after someone wakes me up if that person will let me go back to sleep.

 

This matter of coming home and falling back asleep has been possible only a few times.  Two or three maybe.

 

I'm still feeling depressed, anxious and angry especially after I wake up in the night.  I stew for hours it seems.  I feel that if I could make someone pay for what he/she has done to me it would stop this entire experience, but I know that isn't true.  Who?  There is no one person.  I see a different doctor every time I walk into Kaiser.  None of them take responsibility for any patients.  It's like having the whole town as volunteer fire fighters with no dedicated squad -- "someone else will do it" -- "someone else caused this so I have no responsibility to fix it."  Mostly, it's apathy, ignorance and blind reliance on the pharmaceutical industry's "research" findings, I suppose, but every time I find an article that cautions that ADs or SSRIs may cause this or that problem and it's dated over 10 years ago, I wish there were ONE person I could strangle.

[Rabe]

11 hours ago, Rosetta said:

 I feel that if I could make someone pay for what he/she has done to me it would stop this entire experience,

Found this interesting in that I was thinking sort of the same thing today...that it just is not right that doctors/people get away with what they do and NOTHING is done about it....what stops it?  Who breaks the chain?  I thought lots about a lawyer...imagining he would actually care and somehow challenge these doctors who are clearly guilty of abuse and neglect.  

 

11 hours ago, Rosetta said:

I wish there were ONE person I could strangle.

Then I thought maybe THIS would be cheaper! 🤔🤑  Such craziness Rosetta and so many suffering as a result.  I just find it hard to read so much here and feel nothing changes.  I dont know how the mods do what they do as when I read threads here I just feel so deeply the hurt and pain.  But you did bring a smile with your thoughts today...Im with you in them!!

So happy you are feeling better!!  Love and hugs dear friend!💜

[Rosetta]

Thanks @Rabe.  The doctors do not truly understand what they are doing, but that does not excuse them whatsoever.  Not even close.  They should be interested in finding out what the downsides to these medications can be and how horrifying they can be.  They are literally killing people.  Destroying families.  Marriages. And, of course, the lives of people who do not take the drugs and who have no one close to them who take the drugs.  

 

Strangling someone would have absolutely no effect on the problem whatsoever.  None.  Zip.  Zilch.  Completely useless.  A waste of time and effort.  Sometimes that fact is the most demoralizing of all.

 

I'm glad I could make you laugh.  A lawyer would be utterly useless.  The legal system in this country is a joke for almost every case.  One never knows when that might change.  It will never, ever change on a large scale, but there might be one person who gets some paltry amount of money for their suffering.  I do mean paltry.  A drop in the bucket that would have no effect on pharmaceutical companies.  Our only hope is that one of these b*****ds gets Akathisia himself, and even then we would never know about it.

[neroli]

Hello Rosetta

 

I agree with so many of your sentiments - the utter denial and incompetency of the "professionals" is astounding - they surely cannot be ignorant of the support groups abounding for people having difficulties with these drugs?  It baffles me.

 

On 5/2/2019 at 6:53 AM, Rosetta said:

I do think being able to sleep this morning is a good sign that the cortisol issue is starting to resolve.

 

I really hope so - must be horrible to get the morning spike, so am wishing for you that this is on its way out.

 

Best of wishes

 

Neroli 💜

 

[Rosetta]

Thanks Neroli.  I hope you are ok.

 

Journal: 

 

I have been coping pretty well since Friday afternoon except for extreme frustration and anger today from about 12-2:00.   I went shopping on Friday night for my daughter's birthday party.  Usually, that is impossibly frustrating as I can't think straight through anxiety.   I was able to get packed up and ready to head out to my mother in law's by the time I went to bed.  Also, I had very strong tension in my muscles Friday.  Falling asleep was difficult.  I had no idea how I would feel the next morning.  

 

Saturday morning went fine.  Low anxiety.  What luck. The party on Saturday was exhausting, but my brain worked, and I handled the stress well.  There were no disasters the way there were when we hosted the two preschool friends last weekend.  There were 10 kids this time instead of 4.  I had 8 parents to host, but the moms helped me.  Yet, it was easier than last weekend. That's the difference between a good day and a bad day with this syndrome.  I never know what kind of day it will be.

 

On Sunday, I was wiped out, but I went to the store and bought materials to decorate my daughter's teacher's classroom door and another mom helped me make the banner.  I found it out this this was a "thing" on Saturday at the party.  Sure enough, almost all the doors were decorated today.  Those that were not stood out.  This new "Pinterest" culture gets crazy, but I didn't want the teacher's feelings hurt.  There is another mom who is helping me this week at least.

 

My appetite has been poor.  Even so, I ate a full breakfast this morning.  Today, I was trying to send out emails to the classroom's parents for teacher appreciation week.  Sometimes the software helps me by populating the email address after a few letters and sometimes it doesn't.  I ended up typing them all in over and over, 24 email addresses, and getting the emails wrong so they were rejected.  I kept getting very confused and frustrated.  The software changes so fast that I can't keep up.  My iPad will not even allow me to use email now.  I can't see my desktop screen.  My bifocals don't allow me to see it.  So, I'm doing all of this on my phone.  I had a near--meltdown.  Im glad that my daughter was at school.

 

I have had the Akathisia feeling in my legs -- kind of a RLS feeling --- since last night at bedtime.  My ability to ignore frustration is so compromised when I have that nervous vibration in my muscles.  Today, my face is tight and painful.  I'm clumsy.  

 

It's very clear that there is a strong connection between intense symptoms and the hormonal cycle.

 

Right now I have the overwhelming feeling that I need to fall asleep.  I hate to leave my daughter watching tv.  I don't know whether I should stay up with her or try to nap.  I'd like to go for a walk in the sun, but I don't have the energy.  

 

[wantrelief]

4 hours ago, Rosetta said:

The party on Saturday was exhausting, but my brain worked, and I handled the stress well.

I am so happy for you that your brain was working well and you handled all of that stress so well...what a relief!   It sounds like there are still challenges but overall it really sounds like things are moving in the right direction. 

 

 

[DMV64]

12 hours ago, Rosetta said:

as I can't think straight through anxiety.

Hello...

Oh boy can I relate to this. I cannot put two thoughts together in anxiety. I hate it.

Been thinking of you as I am healing slowly. Hope today is a good day.

[Rabe]

Hi Rosetta,  I am so happy to hear the birthday went well...that is a blessing and a testament to your perseverance.  Also glad you decorated the doors...good grief!  Seems so ridiculous given what you deal with daily...but in the everyday world that is important, mostly to your daughter so Im so happy that went ok as well.  

16 hours ago, Rosetta said:

t's very clear that there is a strong connection between intense symptoms and the hormonal cycle.

I think this is so true...but also think there is a strong connection between symptoms and stress...and you have had a lot of that lately!!!  Hope you have time to take care of you for a bit!  Love and hugs Rosetta!!!💜

[Rosetta]

@wantrelief @DMV64 @Rabe  Thanks, you three.  Yes, it was a relief that all went well.  The yo-yo string is sometimes threatening to break and send me flying off into the upper atmosphere, but it hasn't yet!!

 

Yesterday, I did fall asleep sitting up again.  I wondered if that might happen.  It's so odd.  It's was as if I took cold medicine, but I hadn't. My brain is not regulating anything properly.  How we live through this I'm not sure.  

 

Today, I went for a walk, but I didn't feel like it.  It was a short walk.  I feel so tired.  I feel that I need a vacation, and yet I know that a vacation would do nothing to relax me.  I have been trying to use Brassmonkey's silver suit meditation.  I skipped gymnastics today.  I wanted to stay home and just watch TV.  That was all I felt I could do.  Tonight I'm wiped out.  It's 7:45, and I can't wait to go to bed.

 

This week is busy.  There is a field trip tomorrow, talent show rehearsal after school, art on Friday morning and talent show on Friday night.  I hope I get some energy.

[Rosetta]

I skipped gymnastics on Tuesday afternoon.

 

I went on the field trip on Wednesday morning.

 

My husband went to the talent show rehearsal Wednesday afternoon, but my daughter woke up sick this morning.  I haven't been able to put enough effort into helping my daughter with her act, and the rehearsal went very poorly.  Her throat is sore now after a cough that has been going on since Sunday.  So, she missed school today which means she missed the school hours performance.  She doesn't want to perform tomorrow night.  I'm sad, but this is how it goes sometimes.  I would rather she miss it than be embarrassed due to the lack of time I had these past couples of weeks to help her practice.

 

I suppose I'll teach art tomorrow.  I'm not looking forward to it, but it will probably be ok.  

 

Today, I had a hard time waking up, and I felt so desperately lethargic and sleepy that I wanted to go back to bed after trying to get my daughter ready for school.  But my daughter couldn't go back to sleep, and my friend, whom I haven't seen for many weeks, came over.  

 

My friend usually visits me on Thursdays.  Lately, I have been so anxious on Thursday mornings that I forget she's coming, and I go with my husband because I don't want to be alone.  Today, I barely remembered.   I took her to have tea, and we had a good talk.  She was telling me about her comically frustrating last few weeks during which all sorts of unfortunate, but minor in the grand scheme of things, accidents have happened to her and her family.  She's very good at weathering stressful situations and laughing at her own misfortune.  I always feel better after I see her.

 

The fatigue I had earlier today lifted.  I have to admit that getting a reprieve from the stress of seeing my daughter try to deal with the talent show has made me feel . . . Well ... Extremely Relieved.  This is a very familiar feeling from the time when I was on Celexa and Zoloft.  If anything was cancelled or rescheduled, no matter whether it was a good thing or a bad thing, I felt great relief -- almost joy.  Anticipatory anxiety/stress has been a part of my life for nearly 18 years.  I recall being in a group therapy where all the people talked about having anxiety, and I didn't.  I felt so bad for them.  We were all on some sort of AD, but I hadn't been on mine very long.  I look back and realize that this constant anticipatory anxiety was never a part of my life prior to ADs.  I used to feel excitement and stress if I had a test or a paper due, but I never considered it to be an overwhelming anxiety that would make me want to avoid the situation at all cost -- including foregoing the potential reward from facing the situation and succeeding.  

 

Today, I feel that same near joy -- situation avoided -- without the extreme fear that avoiding the situation will result in a permanent disadvantage to the rest of my life.  That extreme fear has accompanied almost every missed opportunity brought about by my anticipatory anxiety for a couple of years now.  I'm sad, of course.  I'm worried that my daughter will try to avoid performing after this "bad experience," but I feel that is something both she and I are capable of working out later.  It's rare that I feel ok about missing out on an opportunity for my daughter to achieve something that enhances her self confidence.   This time I felt that the harm from pushing her to perform when she's sick and unprepared would outweigh any benefit.  

 

Maybe this is proof of an increased ability to weigh pros and cons and make decisions without crippling anxiety short circuiting my executive function.  I know it's simply lucky that I have this functionality on a day that I need it and that the non-linear nature of neuroplastic healing means I'll be a quivering stress case again someday under similar circumstances, but I'm glad I'm coping right now.  Hopefully, all the inconsistencies in my moods and behavior will not permanently damage my daughter's development if I can keep experiencing improvements.  I'm worried that it has all ready done so.  I'm wondering if we can reverse that damage instead of feeling certain that she's irretrievably broken.  That's a good sign of neuro-emotion symptom improvement.

 

[Rabe]

Im so glad you are coping well right now Rosetta....but I feel you always cope well given what you are dealing with at any given time.  Always incredible to me.  

I dont believe your daughter and irretrievably broken...I just dont.  There is too much goodness and love and concern from you as a mother for her not to feel that...you always give her 100+ percent....she wont forget that.  Love and hugs! 💜

 

Its interesting because I worry that my kids who are grown will forget all the good times we had together as they are up with me and the dogs.  It is hard at any age I think...

[Rosetta]

Thanks, Rabe. Your kids won't forget the good times.  I'm sure of that.

 

Journal:

 

Yesterday went ok.  Art went well, and my neuro-anger has been fading over the last week.  I was able to deal with the situation as if nothing had happened.  On Thursday morning, I went to give the teacher muffins for teacher appreciation week and the other art volunteer teacher was there for her classroom volunteer time.  She was preparing to hang up one of my art projects.  That was an olive branch.

 

Edit: I forgot to mention that after I picked up my daughter from school yesterday and had an early dinner I fell asleep on the couch!  We were watching TV cartoons, and I dozed.  Last night, the time I spent lying awake in the early hours was quite short comparatively.

 

In the night when I wake up I feel less anger.  The aches in my joints and the contraction of my muscles has been bothering me over the last few days.  Today, it's less intense than it has been in the past.  I suppose this is what people mean when they say they have flu-like symptoms.  In the past, I didn't understand the analogy as my muscle contractions were much more intense.  Maybe it's a matter of degree.  Just as not everyone developers WD syndrome not everyone feels it to the same degree across all symptoms.  As usual, reading and writing exacerbates the contraction of the muscles in my neck, face and temple, all on the right side, and in my leg and foot on the right side, too.  So strange that reading and writing should affect my leg and foot.

 

Otherwise, I'm grateful to be free of Akathisia and cog fog and anxiety today.  I was reading another person's thread, a person who joined this site in 2011.  The person described being unable to get jokes, inability to find the word he wanted to use, and taking others' statements literally when they used common euphemisms.  I recognize all of those as symptoms I don't have presently.  Such a relief, but I continue to feel awe at what that drug and the discontinuation of it did to my brain and my body.  It's terrifying.  It's hard for me to feel safe out in public knowing that almost anyone could be walking around or driving around with a severely compromised brain while their doctor is in denial.

 

I'm feeling a bit of welcome resignation and disinterest today.  I know it's not normal, but I'm just glad to have a feeling of "meh" to everything although, intellectually, I know that the world is going to hell in a handbasket.  I'm just glad my brain is giving me a break even though my body hurts right now.

[Gridley]

1 hour ago, Rosetta said:

Otherwise, I'm grateful to be free of Akathisia and cog fog and anxiety today.  

 

Glad you're having a well-deserved break, Rosetta!

[Rabe]

I am feeling SO happy for you as read your post Rosetta!  Always grateful to see and hear the waves recede!  Hope you have a lovely Mothers Day!!!  Love and hugs to you my dear friend!!💜