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

[Rosetta]

Thanks everyone.

 

Very little sleep last night.  Maybe 4 hours.  I woke up as usual, but I couldn't go back to sleep until 7:00 am.  Then I slept about an hour and a 1/2.  I don't know for sure why this is happening, but it must have to do with my period.  On top of so little sleep the night before I'm exhausted now, but I wasn't during the day.  I would find that strange, but considering the last 2 years of oddness, I'm not surprised by anything.

 

I made it through the day without crying or having a meltdown, no problem.  That's odd, too.  I didn't have to go anywhere.  I spent the day with my daughter studying Spanish and building a Lego set.  I wasn't particulary fatigued.  I wasn't anxious.  

 

In the night there was some anxiety, but it wasn't crazy, off the charts, anxiety.  A lot of sadness.  Thought about how my family was.  How I wasn't very important to them.  I'm sure my grandparents wouldn't have realized it seemed that way.  I was probably raised the way they were.  But their presence wasn't great during my teen years when my mother neglected me.  They had no idea what was happening.  I didn't tell them.  I wish I had known what mother was doing was so wrong.  Now, having a child, I'm appalled.  It's such a deep sadness.  It's something I had expected to disappear someday, but instead having a child seems to make it more present.  Of course, it could be all the neuroplasticity dredging up memories.   I practically live in that time period during the night.  It's bizarre.

 

No dystonia today.  My tummy problems cleared up late last night.  My chest isn't tender now.  No headache today.  So, I'm wondering what's up.  Those things should be staying the same or getting worse right now.  Ah, well, bonus!!  I should be so tired I will sleep tonight, but there's no telling what might happen with this syndrome or my cycle.  It's late, 10:00 pm.  I should have been in bed 2 hours ago.

[Rosetta]

Last night I slept!  I did wake at about 5:00 am.  I had the hot feeling that goes with cortisol spikes usually, but I didnt feel too bad.  A little fear at first that dissipated after I got some cold water and turned the AC down a couple of degrees.  Then slept until 9 and woke up feeling ok.  I probably got 9 or 10 hours.  

 

Today, I'm making a cake for Father's Day, but no icing!  I don't need that hassle.  I'm making Grand Marnier cherry pie filling to go inside the cake.  My husband wants chocolate ganache on top.  I think he will make that.  We are, of course, going to his mother's house.  

 

Emotionally, I'm doing ok today more or less.  I made the cake and filling without having any issues.  In terms of being able to get through the day, I think I'm ok.  It's seems so strange.  My daughter has been home for 12 days and it hasn't been nearly as difficult as I expected.  I think I've turned a corner at least a little one.  

 

My period was supposed to have started day before yesterday.

[wantrelief]

5 hours ago, Rosetta said:

I think I've turned a corner at least a little one.  

I think you've turned quite a few corners, Rosetta, and I am so pleased for you.  🙂

[RusTW]

Rosetta so glad to see ya getting  Better.Way to hold it down.You inspire me .Well done.

  Russ   

[Rosetta]

I'm doing ok.  I have been mildly anxious the last three days.  Today I felt a milder version of impending doom for most of the day.  I couldn't shake the feeling that something bad was happening, but I did not feel terrified or panicked.

 

For the last three days I have had painful muscle tension in my head, neck, shoulders, chest.  I'm clenching my jaw and waking up with quite a lot of pain, too, through the night and at 7:00 am.  Monday and Tuesday I took ibuprophen.  Today the pain during the day was milder, and I skipped the ibuprophen.  For the last two days I have had mild aching in my hips and thighs.

 

I walked Monday and today (Wednesday).

[DMV64]

15 hours ago, Rosetta said:

have had mild aching in my hips and thighs.

Me too! I am with you. How are you doing now??

xo

DMV

[Rabe]

I wanted to say as well that you have turned so many corners it could be blocks and blocks long!  Your postings have a very different ring to them...things are there but seem softer/less intense and overwhelming.  I am so happy to hear about the cake! YAY! And the house...feeling more comfortable is such a huge step for you!  Hoping today has been kind to you Rosetta.  Love and hugs to you my friend!💜

[Rosetta]

8 hours ago, DMV64 said:

Me too! I am with you. How are you doing now??

xo

DMV

 

Still no Mother Nature, but joint aches, head, neck tension that extends to the  muscles in my chest.  After ibuprophen and milk that went away and I had a GD headache on the right side.  Another ibuprophen and a heating pad on my arm took care of that.  

 

I took a long walk through a wooded valley today.  The stream is still running swiftly.    I think I got dehydrated.  The last part of the walk I developed the tension pain.

 

All in all a pretty good day.  Amazing to say that.

[Carmie]

So glad to hear you had a pretty good day Rosetta, yay!🎉

[Rosetta]

Thank you, @Rabe.  This morning I had that same feeling that something bad was going to happen.  Really, it was more as if something bad WAS happening.  It's such a strong feeling.  I'm not having the intense anxiety at the same time.  I know it's not a reason to be concerned, but I can't shake it until it goes away on its own.  In the past, I had the feeling of intense fear and impending doom.  I had to act on it. I spent countless hours trying to plan for disaster and protect myself and my family.  Now, I can see that all of that was due to the drugs and withdrawal and dysautonomia.  The dissipation of this milder form of the symptom helps to make that clear as a bell.  It's the strangest relevation.  Then I forget about the relevation, and the next time the symptom dissipates, I am struck by that relevation again.  I'm not sure what is more disconcerting - that the symptom keeps returning or that I forget about the relevation during the occurrence of the symptom.  I don't know if that makes any sense, but I seem to be so overwhelmed by the feeling that something terrible is happening that I can't remember what it is like for that feeling to be absent.  When it's gone, I feel the enormity of what it means to be unable to shake the feeling. At least I'm not running around desperately trying to prepare for disaster.  That drove my poor husband pretty nuts.  

 

Very odd, Rabe.  I hope that impending doom isn't a part of your experience of this horrible syndrome.

[Rosetta]

Thanks, Carmie.  Maybe this is what stablization is like.  @Carmie

[Rosetta]

I felt crummy yesterday -- pain from muscle tension mostly, but also low mood.  I didn't walk.  I did very little.  Watched tv mostly.  I went out twice in the car.  

 

Today was a lot better.  I'm still having ugly cortisol spikes in morning and very sad, disturbed feelings about life after the spikes, but today at least the bad feelings dissipated after I got up.  That feeling something bad would happen was not occurring today!  I had muscle tension only in the night and upon awakening -- maybe from clenching my jaw.  It did not last all day.  What a relief that was for those two quite troubling symptoms to be absent.  I felt more or less NORMAL!  It was so nice.

 

We went to a natural history museum here in town.  It's a very cool, small one, but it's closing at the end of the month.  We also had dinner out.  We studied Spanish for a while.  Getting to bed very late 11:30.  Maybe I'm a tiny bit manic-ish.  I should be tired, but I'm not.

 

Still no mother nature!

[RichT]

46 minutes ago, Rosetta said:

I felt crummy yesterday -- pain from muscle tension mostly, but also low mood.  I didn't walk.  I did very little.  Watched tv mostly.  I went out twice in the car.  

 

Today was a lot better.  I'm still having ugly cortisol spikes in morning and very sad, disturbed feelings about life after the spikes, but today at least the bad feelings dissipated after I got up.  That feeling something bad would happen was not occurring today!  I had muscle tension only in the night and upon awakening -- maybe from clenching my jaw.  It did not last all day.  What a relief that was for those two quite troubling symptoms to be absent.  I felt more or less NORMAL!  It was so nice.

 

We went to a natural history museum here in town.  It's a very cool, small one, but it's closing at the end of the month.  We also had dinner out.  We studied Spanish for a while.  Getting to bed very late 11:30.  Maybe I'm a tiny bit manic-ish.  I should be tired, but I'm not.

 

Still no mother nature!

 

That’s great to hear Rosetta, I hope you have many more days like that.

 

warmest wishes,

 

Rich

[neroli]

On 6/23/2019 at 6:34 PM, Rosetta said:

I felt more or less NORMAL!  It was so nice.

 

How lovely, Rosetta.

 

Wishing you many more of those moments.

 

love and best wishes

 

Neroli 💜

[Rosetta]

Thank you Rich and Neroli.

 

The dystonia came back before I went to bed last night.  Really tough to sleep through.  I clench my jaw and end up waking up in pain.  Today, I went for a long walk in a wooded valley.  So beautiful.  I saw a raptor who was making a fuss.  Not sure why.  After I went home I took some ibuprophen.

 

I'm still very apathetic.  I always hope I'll get some organizing done, but I never do.  At least I cooked for my daughter and washed the dishes and took out the recycling today.  That's more than I do most days.  When I'm at home I feel very "lazy."  I think my ability to organize is usually there, but the thought of even trying makes me feel overwhelmed.  I can't start.  

[Dejavu]

2 hours ago, Rosetta said:

The dystonia came back before I went to bed last night.  Really tough to sleep through.  I clench my jaw and end up waking up in pain.  

Booo!!! So sorry. I'm sure it will pass soon. Sending you good vibes!

 

2 hours ago, Rosetta said:

When I'm at home I feel very "lazy."  I think my ability to organize is usually there, but the thought of even trying makes me feel overwhelmed.  I can't start.  

Yes. This is me. Every. Single. Day. Maybe we should make a Productivity Pact...lol!!

[Rabe]

On 6/20/2019 at 11:46 PM, Rosetta said:

I had the feeling of intense fear and impending doom.

 

On 6/24/2019 at 11:41 PM, Rosetta said:

I'm still very apathetic.

 

Hi Rosetta...Im sorry some of those old feelings and symptoms are returning...but SO much improved its amazing..though Im sure it doesnt feel that way.

I have much fear and feelings that something bad is going to happen and thoughts about what it will be...pretty much everyday.  And the apathy is there...I WANT to do things but most everything just seems to be too much.  Thing is you DO do so much!  Do you keep a journal of all you do?  Cause its a lot!

 

Hope mother nature comes soon cause always seems to help.  Love and hug to you Rosetta!💜

 

[Rosetta]

Thanks Deja vu.  Thanks, Rabe, you are right.  Much has improved. 

 

I'm noting the ups and downs here to keep a record of the healung.  It might help someone someday to see that it's not linear, and doctors are putting people back on drugs for the wrong reasons.  The "conditions" are not coming back.  This oscillating is the process of reorganizing the brain.  I think it might parallel the process after any brain injury whether caused by trauma or a stroke.  I would like doctors to recognize that these drugs cause Adverse conditions in the brain and that 1. Recovery is possible and 2. Adding more drugs is very likely to harm the patient.  That's something never mentioned in news articles about antidepressant withdrawal.  I believe Xanax harmed me due to my body being very sensitive after the increases in does it Zoloft over and over.  Trazodone harmed me further.  It's all so tragic that this is happening to others every day.  It's hard for me to come to SA now.  I just can't see it very often.

 

I'm going to get through this, and so are you.  It takes a long time, but you will be ok.

 

Journal:

 Cortisol Spikes this morning since before dark.  Sick feeling afterward.  Depression.  A bit overwhelmed.  I'm expecting these feelings to dissipate as they usually do.

 

We are going to the fair today.  My daughter is sick.  She missed camp yesterday.  I'm really mad at the camp for taking her swimming in 65 degree weather last week and not giving her a towel.  The rule is no towels, but The camp will provide them when necessary.  They dont.  I'm realizing that they don't own any!!  At all.  The email I received said they would provide them when necessary.  I took one for her on the second day, but the counselor forgot to take it to the pool.  Now she's missed a day of camp and she's coughing.  We are going to have to cut our day at the fair short.  At least she will have 2 days with no swimming.  It was quite cool yesterday, too.  I may not take her on Thursday or I may pick her up before they go to swim.  Very irritating.  

[Carmie]

Hi Rosetta, 

 

Glad to hear much has improved. Yes, it’s good to document on here. One day when you’re much better you’ll look back and see what an amazing survivor and warrior you were. 

 

I’m sorry your daughter is sick, I hope she’s better soon.💚

[Rabe]

Hi Rosetta...UGH on the camp situation.  That would be VERY irritating.  Who does not provide a towel when the kids get out in that cooler weather?  😡

Hope you had fun at the fair!  How is the Spanish coming?  Love and hugs to you my friend!💜

[Rosetta]

Hi @Rabe. I wonder if it's some kind of health regulation issue, quite frankly.  It's curious because the YMCA allows towels owned by the kids.  The Y takes kids to the beach every day.  They don't wash the towels for us.  They are sent back home each day.   Usually, it's so dry and hot here that towels dry fast.  

 

Journal:

 

I have been in a wave for many days now.  It's awful, but not quite as awful as in the past.  I am getting weary.  I have headaches, muscle tension pain or dystonia almost every day.  I have cortisol spikes every morning - 2-3 at least -- that cause me to feel naseous, fearful, and deeply sad.  They wear off.  The rest of the day I am fatigued, apathetic, etc.. I push myself to walk, to take my daughter to camp, to pick her up instead of asking my husband to go alone.  I'm not getting much done.  Every few days I manage to do something besides prepare a Spanish lesson such as wash the dishes or do a load of laundry.  I skipped the trip to grandma's on Sunday.  I feel that I need rest, but no amount of rest helps.  

 

I know now this will come to an end, but it's tough to wait for it.  I'm so tired of feeling afraid every morning for no reason.  It's 7:40 am.  I'm shakey and naseous.  I have to get up and face another day.

[direstraits]

I hear you,Rosetta..💙

it's so hard to keep living like this with no end in sight...it's torturous.

 

sending hugs,ds

🤗🤗🤗

[wantrelief]

I completely empathize with you, Rosetta.  You are right, it will end but the waiting is really tough.  I am thinking about you, 💗WR.

[neroli]

Hello Rosetta

 

I understand very well

6 hours ago, Rosetta said:

I'm so tired of feeling afraid every morning for no reason.  It's 7:40 am.  I'm shakey and naseous.  I have to get up and face another day.

 

You are on the mend but it does take time and patience and a lot of endurance.  Well done for getting to where you are at now, you've done a lot in the past few months despite feeling pretty under par.

 

I'm wishing some overall improvement for you, moving that trajectory up a little bit.

 

Neroli 💜

[Elyssa143]

Hi Rosetta❤

Im so glad to see you are improving! I do know how frustrating it is when the symptoms come back. I too am improving, 16 months out. Definitely very much still in withdrawl and get scared that this will never end. But even in a wave usually its not as intense.  I will try to keep up more with you on here. Hugs❤

[Rabe]

Oh Rosetta Im sorry.  It is so hard to feel better and normal and like you are living life instead of watching it.  

On 7/2/2019 at 9:42 AM, Rosetta said:

 I'm not getting much done.

 

You always get something done even in times like this....you walked and drove your daughter to and from camp.  Thats a lot when feeling so not well!  I am glad you did not go visit your MIL but opted to rest instead and take care of yourself.  The other things you mention can be done again when you feel up to it.  There will always be plenty of opportunity for that.  

I so hope your sleep improves...that would help perhaps.

It is so hard to get up and far another day feeling this way...yet you do.  You are incredible Rosetta!  Continue to take care of yourself!  And please give yourself all the credit you deserve for doing all that you do!  Love and hugs to you my dear friend!  💜

[Rosetta]

I'm a wreck.  It's 5:22 am.  I woke up and couldn't go back to sleep.  I am crying real tears.  It's been a long time since I could cry tears.  Maybe this is a good thing.  I'm feeling a profound sense of loss.  I miss my child as if she's gone, but she's right here next to me.  I miss her -- the her she was at 3 and 4 -- before this illness became much worse.  They were raising the dose of Zoloft, and I know now that it was kindling me.   We had such fun together.  She doesn't remember that.  That is very painful to me.  I built playhouses out of cardboard boxes for her.  I made play dough.  I set up a train set.  I would have times when I was somewhat manic and had so much energy.  Then it became too much, and I would obsess over something.  I lost my ability to play.  I cycled through what must have been windows and waves.  How wish I had known then to stop raising the Zoloft.  I wish my doctor had known.  

 

I had a miscarriage when she was 2 1/2.  December 23rd.  I was at 12 weeks, and my morning sickness had suddenly stopped at about 6 weeks.  I worried about that, but I tried to ignore it.  I know that having a second child would have changed everything for my daughter.  I thought at the time that it would have been very good for her to have a sibling, but now I know what was happening to me, and I think she is better off.  It still makes me very sad that I lost that baby, but how would I have dealt with having a new baby and a toddler in the condition I was unwittingly facing?   Of course, I wish I had never been put in this position. I wish I had both children, and that I never experienced this syndrome.

 

In any event, my daughter and I were very close after that, and the Zoloft seems to have interfered with that closeness.  I worry how that has affected her personality.  I'm not really sure what even happened to me when she was 3 and 4, but I remember how much fun we had.  I started to have some problems with my cognition, but nothing alarming.  I was working some.  I felt in control, but I thought I was just a bad housekeeper.  I didn't understand how other mothers kept house, and I thought I was just not able to do it well with a child, too.  It didn't upset me very much.  I wasn't anxious about that!  We did a lot of crafts together when she was 4 and 5.  I was able to have her 5th birthday party, but not at my house.  That was in May.  A big party with lots of kids.  It was simple, but there were a lot of people.  So, I know I was functioning, but I wasn't normal.  

 

That Summer of 2016 I was still trying to work.  I went to the track a lot to socialize.  My daughter still remembers going with me.  It was fun.  She still wants to go back, but I gave up my passes.  (The next Summer I paid for passes, but I was too sick to go after I quit Zoloft.)  At some point, I lost my creativity.  I couldn't play with her even when I wanted to.  The ideas wouldn't come.  She was growing, too.  She wasn't simply following my lead.  She had her own ideas, and I had trouble keeping track of everything -- objects, my thoughts, where I put things.  The house became a real mess about that time.  I couldn't keep up, but I had no idea that my brain was the problem.  I was very excited about life, however.  I felt that we were on the right track. 

 

In the Fall, Kindergarten was hard at first.  We drove her 45 minutes away to an all day kindergarten because the local kinder was only a half day long.  I wasn't healthy enough to deal with half day kinder.  My daughter needed more socialization.  Our option for all day kinder wasn't better.  The extra hour and a half in the car was a problem, too.  We had to get up too early, of course, for a 5 year old.  I was having the morning cortisol issues, but I didn't know about WD or cortisol spikes.  I thought I was genuinely under attack from all sides.   I thought the world had gone mad.  It had, of course, but so had I.  November of 2016 was Earth shattering for everyone and even for the people who were happy with the election results the next year was full of uncertainty and change.  I thought what was happening to me was real.  I thought I was having a normal reaction to the circumstances.  

 

The school was ridiculous.  The people who sent their kids there were frightened and many were struggling financially.  It was a private school, but not the most expensive.  It was not affordable either.  All the parents were very stressed.  Everyone was living an Instagram life and many beyond their means.  The teachers were stressed, and the admin reacted by shutting the parents out as much as possible.  I was so surprised.  My husband confirms that my perception that intense anxiety was swirling around that school was correct.  I felt so cut off from my daughter.  The teachers wouldn't tell me how she was doing.  They had decided that parents would pressure their kids if they knew the truth about their progress.  That was probably true for many of those parents, but we were the opposite.  The school was very academic, and that was the opposite of what we wanted for kinder.  I was worried about my child's social development.  The lack of information and the outright refusal to let me know anything contributed to my anxiety greatly.  I had the sense that my daughter was being stolen from me.  It was awful.

 

By December, my husband had convinced me that the school was not the right fit, but that nothing really bad was happening to justify my level of anxiety.  I decided that Zoloft was causing my problems with anxiety.  Somehow, and I don't know where, I learned about anti-depressants causing anxiety.  I decide to "taper" off.  I used the information I found on the Mayo Clinic website, I think, to taper.  I had no idea that I was essentially cold turkeying 150 mg of Zoloft.  By mid-February, I was done.  I felt better at first.  I remember that, and I thought I had done the right thing.  Then, the same problems I had had before came back and they got worse and worse and worse.  The house got worse and worse.  My daughter was turning 6 in May.  I managed a birthday party for her -- not at the house.  (By her next birthday, I could not even think about having a party.)

 

That Summer was pretty bad.  That makes me so sad.  My daughter was 6.  She's now 8.  I feel that I've lost 2 years of her life.  I haven't.  I've been there.  I have tried to document here on this thread everything we have done together.  However, I'm in an emotional space right now in which I feel that I have missed the last 2-3 years of her life.  It's intensely painful.  I want to see my 4 year old so badly.  It feels as if she died.  That's how painful it is to me although I'm quite sure I'm not actually feeling the grief that a mother whose child died would feel.  I want to be there for my 5 year old, too, but I can't.  She's gone.  I miss her so much.  I feel that she was taken from me.  Something went wrong, very wrong, when she was 4.  There was a time when the Zoloft stopped working or the dose was raised that caused a cascade of things to happen in my brain.  I want to be there for my 6 year old.  I missed that Summer with her.  I was so very sick that Summer.  I miss my 7 year old.  I can't believe my 7 year old is gone, too.  I feel we continue to grow apart.  We very rarely have fun together.  I feel that I am always barking at her.  When I want her to go with me somewhere she doesn't want to.  Being with me isn't fun.  Maybe it isn't even pleasant.  I have no ability to be fun.

 

Maybe all mothers feel this to some extent?  They worked or they had other children or they had something to interfere in raising their children the way they would have liked?  I'm very fortunate that I have not had to work.  So fortunate.  

 

I feel that my daughter is slipping away.  I feel that my life is slipping away.  It scares me to think of life after she's grown.  I won't know what to do with myself.  

 

One part of this illness that is so challenging is trying to seize the day when I feel terrible.  I don't want to regret another year of not being with my daughter.  Of not having fun with my daughter, but if I'm in pain, and I'm irritable all day that's not how I want her to remember me.   That's not how I want her to be when she's grown up!!  It's a catch 22.  I suppose what I really want is to play with her.  I want to be a child with her, I suppose.  I know she wishes I could be.  She can't understand why I can't play.  Maybe most adults can't.  Maybe it was easy to lead her in play when she was very small and now that she has her own ideas . . . I don't know.  The misplaced toys I see distract me.  It's hard for me to focus on the toys we are using.  Very hard.  Sometimes I simply can't do it.  I'm distracted by adult life I suppose -- all the things I "should" have done like cleaning up and keeping things organized.  I'm distracted by my failings and that distraction causes me to fail again -- at being present with my daughter whom I love more than anything!

 

I am very scared that I have cancer.  I really need to go to the doctor.  I have a spot.  I have had several since I quit Zoloft.  Maybe it's psoriasis.  They come and go.  Skin tags come and go.  My skin peels for no reason.  I have lost several freckles or moles.  I have lost freckles that I had for 20 years.  They literally peeled off.  This spot is kind of hard.  It hurts if I touch it.  It sort of itches, but not really.  I can't tell if it's growing or not.  I can't see it.  I don't want to worry my husband.  I haven't told him.  I don't trust the doctors, of course, but I can't ignore this.  

 

Now its 7:26 am.  At least I can't have a cortisol spike if I'm not asleep!

 

 

[Rosetta]

Thanks @Dejavu @Elyssa143 @direstraits @RichT @Carmie

 

 for your comments.  I really appreciate your support.  You are all so sweet to check in on me.  I'm sorry that I can't get to many threads right now.  I hope you are doing ok. Thank you from the bottom of my heart.

 

Rosetta

[Rosetta]

Last night, thankfully, I was able to go back to sleep after the cortisol awakening around 5 or so.  The cortisol awakenings continued to happen until I was wide awake around 7 or so.  Anxiety stayed with me almost all day.  I refrained from teaching Spanish to my daughter because the anxiety was too high.  Stayed home.  I tired to put up hooks to organize some kitchen utensils, but it was so hard to do because of anxiety that it made me cry.   I drop things; I feel like I've had too much coffee, yet I have had none, except decaf.   I'm not paralyzed completely the way I used to be, but I can't do much at home.  I wanted to go out in the morning, but my husband had things to do.  So, it's 9:00 pm and I'm still buzzy.  

 

Yesterday, I took a walk on the beach.  I felt nervous the whole time.  This is a long wave.  Tired.  Want to live life, but I can't.  Want to fix my house.  Can't.  At least I feel confident that this wave will end.  No SI.  Just strong frustration.  I'm running out of time.  We leave for Spain in less than 2 months.  So frustrated.  I would like to leave the house in some sort of decent shape for the house sitter.

[Rabe]

Dear Rosetta...I want you to know I read your long post earlier but could not write as my mind is so foggy today and I have been quite anxious and not feeling well....wanted you to know have been thinking about you so very very much!.

On 7/4/2019 at 9:44 AM, Rosetta said:

We had such fun together.  She doesn't remember that.  That is very painful to me.  I built playhouses out of cardboard boxes for her.  I made play dough.  I set up a train set.

This sounds so lovely Rosetta...and I believe that although it may seem she does not remember now...she will remember...I know this because of myself and my own children.  It is only later when they are older and 'wiser' that they really reflect and go back to their childhoods with fondness and gratitude.  NEVer did I think I would ever hear 'I miss you" from my oldest son!  I thought he didnt have any good memories at all...but he is always surprising me with the things he remembers ad the details!  It has calmed that part of my heart that has felt so guilty and ad for so many years.  I hope that you can know you have done and given all you have at any given moment and it WILL be remembered and it will be cherished by your daughter.  7 and 8 (give or take) there is a shift...my kids were trying to transition from little kid to a bigger kid and I remember it as a challenging but interesting times they tried to find their own identity etc.  I dont think it is that she doesnt remember those things or think they were fabulous...they juset are not where her mind is I suspect which is hard because yours is so often there which I can understand as I feel the same with my children and grandchildren and friends and life since all this started.  I feel I already have lost so many moments and so much time...it is a hard thing to accept.  But having any moments it a gift....I try to remind myself of that...sometimes I am successful and others the pain is too intense and those few moments seem like a drop in a large body of water....lost. 

 

On 7/4/2019 at 9:44 AM, Rosetta said:

 I can't believe my 7 year old is gone, too.  I feel we continue to grow apart.  We very rarely have fun together.  I feel that I am always barking at her.  When I want her to go with me somewhere she doesn't want to.  Being with me isn't fun.  Maybe it isn't even pleasant.  I have no ability to be fun.

She is not gone...just the age is gone....and she is changing and finding her own identity...breaking away.  It is a hard time but I hope you can know it is not about not wanting to be with you...it is her wanting to find her life with her friends and all.  Painful but wonderful when some years go by.  She will be back and will want your advice and your input and your ear and your support.  That is what I believe in any case from my own experience.  

As far as no ability to be fun I remember not too long ago you posted about you and your daighter having a lovely day together laughing and having such a good time doing something at the table?  I cant remember exactly.  You are fun!  But you are also the one that helps her be responsible.  Thats ok.

On 7/4/2019 at 9:44 AM, Rosetta said:

I'm distracted by my failings and that distraction causes me to fail again -- at being present with my daughter whom I love more than anything!

I know I struggle with this and others here have posted some things similar as well...it is so so hard Rosetta and I am sorry for what you are feeling as my heart that aches so often aches for you.  

On 7/4/2019 at 9:44 AM, Rosetta said:

I am very scared that I have cancer.  I really need to go to the doctor.  I have a spot

This is something that has been scaring you for some time.  I so hope you will get it checked so that you can put your fears to rest...you deserve to do that for yourself and find the peace that follows when you know all is ok.  Perhaps that would help other things as well with even one less thing to be concerned and distracted about.  I so hope this could be true for you Rosetta.  

 

I love you dearly my friend and was so grateful to come back and read that you are feeling some better.  Take care Rosetta and know that you are loved by so many here...and are loved by your daughter and husband as well.  Take care of you!!!  Love nd hugs!!💜

[Dejavu]

2 hours ago, Rosetta said:

2 hours ago, Rosetta said:

At least I feel confident that this wave will end.  No SI.  Just strong frustration.

 

Well, there's that. Not to be glib, but that's very positive. Don't underestimate it.

 

But I do understand how you feel. I really felt for you when you wrote of missing your daughter. But may I offer you some perspective, mom to mom?

 

On 7/4/2019 at 9:44 AM, Rosetta said:

Maybe all mothers feel this to some extent?  They worked or they had other children or they had something to interfere in raising their children the way they would have liked?  

Oh, abso-freakin'-lutely!! Career, ex-husband, and a million other things. You are not alone. Far from it. We all have ideas about how we want to raise our families. But as John Lennon said, "Life is what happens to you while you're busy making other plans." 

 

I was not on psych drugs at all when my daughters were small (for some odd reason, I waited until I was 55 years old to make that particular mistake - smh!). But I'm a Type A, uber-organized "planner" by nature, which has it's limited uses to be sure, but one huge drawback is that I feel I've almost never been in the moment in my entire life. Too busy looking ahead, planning for contingencies, getting things done, etc. And you know what? I feel the exact same way you do. I watched my adult daughter hold her own baby last week and thought to myself: "When in the world did THIS happen?" 

"How did she grow up right under my nose?"

"Wasn't she a baby herself just a minute ago?"

The sad truth of it is while both my girls were growing up, I was there, but I wasn't there. While they were learning to walk, I was already getting ready for preschool in my head. When they were in preschool, I was thinking about middle school. High school graduation? All I could think about was them leaving home and how I would worry. You get the point, I'm sure. 

 

I regret it, deeply. I would gladly relive benzo withdrawal, AD cold turkey and reinstatement a thousand times over if I could just go back in time and fix that one thing. I've agonized over this particular glass of spilled milk in my head a million times. I've wailed about it to therapists. I've begged my children for foregiveness, but they have both told me they never felt neglected or abandoned and that they have nothing to forgive. Quite the contrary, in fact. They call me Helicopter Mom, because they say I've always hovered over them. That's when the penny dropped for me. They never knew. They never knew my thoughts were miles away. All they remember was that I showed up for them. I was there. The only one paying a price was me.

 

On 7/4/2019 at 9:44 AM, Rosetta said:

but if I'm in pain, and I'm irritable all day that's not how I want her to remember me.

Remember you? You're not going anywhere anytime soon.  And this is a temporary blip on the radar. There will be many more moments, many more memories, a lot more water under the bridge before your mother/child story is finished. And they will be epic!

 

Is there anything low key you can do together? You do Spanish lessons together - does she enjoy that? Can you maybe think of ways to make it more fun for her? Spanish music? Costumes, perhaps? Little girls love to dress up. She's 8 - can you just go ahead and tell her that Mommy isn't feeling very well right now (which she's probably already figured out), but she shouldn't worry because you will be okay soon, and for now, you and she need to do some quiet activities? You say she has her own ideas about playing - ask her to write a story and draw pictures about the games she'd like to play with you when you're better. Maybe ask her to act out a play for you. You see what I'm getting at? Activities where she gets to be active and imaginative, and you get to be passive, rest your poor body and still give her undivided attention.

On 7/4/2019 at 9:44 AM, Rosetta said:

The misplaced toys I see distract me

 

On 7/4/2019 at 9:44 AM, Rosetta said:

 I'm distracted by adult life I suppose -- all the things I "should" have done like cleaning up and keeping things organized.

What can I say, but "life's too short?" No one ever laid on their death bed and said, "Gee, I wish I'd done more housework."

 

 She doesn't know your racing fearful thoughts. She doesn't notice your trembling hand or the circles under your eyes. She can't feel your head spinning. She just knows that you're there. You're Mom. All you have to do is be Mom. And I know that in our condition, that's not always an easy thing to do. Love will take it from there.

 

Sending you healing energy tonight!

 

DJV

[Rosetta]

I'm really struggling.  It's 3:17 am.  I just woke up from a cortisol spike, and I'm in tears.  I feel that I'm dying.  I have an overwhelming fear that I am slowly, imperceptibly dying.  No one can see it.  I can't point to anything that would be good evidence to show that this is true, but it's the strongest feeling.  That itching, of course, continues to bother me.  It seems to remind me that I'm dying - of cancer, I suppose.

 

The feeling that I am disconnected from everyone is very strong, too.  I have no community.  I have a few individual friends who don't know each other.  I feel lost.  It's very, very hard for me to pay attention to more than one person at a time.  So, why should it matter that my few friends aren't a community for me, but I feel exposed and in danger because of it.  People would never come together for me.  They don't know each other.  I'm realizing what a huge hole there is in my life because my friends don't know each other.  I have always expected to be able to bring them together -- that they would become friends because of my efforts, but I haven't been well enough to do that.  

 

I have wanted to be the person who had get togethers, but I can't do that.  I'm very afraid of what will happen to me and my daughter if I can't do that.  I have been alone most of my life except for my husband.  He has only two friends.  They have no spouses available to me.   One has a spouse, but she isn't well.  She can't socialize. Neither of his friends have kids.  I'm aware of the impact this will have on my daughter's life.  My life is very poor because of this.  I am so lonely and afraid.  It seems that if my husband gets along with someone that person's wife is not interested in me.  Or vice versa.  It's somewhat surprising to me that this is life.  I guess tv made me expect the opposite.  Instead, my friends are on tv.  My grandmother used to say that.  She said the people on tv were her friends.  I found it so odd, but now I get it.  After my grandfather retired and moved them 1500 miles from all her friends she was alone with me.  

 

I have moved a lot.  From high school to just 9 years ago I was constantly moving.  I stayed in one place no more than 4 years after that until now.  I know this is a big part of the problem.  Since I have been here I have been sick.  I tried very hard the first 5 years of my daughter's life.  I have made two friends since she was born.  Their politics are not mine; they are both very religious, and I find organized religion to be a racket.  What is funny is that they would probably be better friends with each other than with me if they knew one another.  Their husbands would not click well with each other though.  My husband doesn't have anything in common with their husbands.  That makes a big difference.  This is all so difficult to navigate.  I don't know how to fix it.  

 

My husband works alone.  I'm alone in my house with him.  The energy it takes just to get my child out there to meet other kids -- to school, to camp -- it's all I can manage.  That's why I need my house in order.  I need to invite people here.  It's the only solution, and yet I can't.  My brain can't do it.   I can't even cull the stuff.  I can't have the house cleaner here or I start to cry.  She only wants to come in the morning, and the anxiety is too high for me then.  I cry every time she is here.  Every time.  I know she thinks I'm insane.  I think I'm insane.

 

Its absurd that I can't invite anyone to my house for a play date.  This is a crazy way to live.  But I tried yesterday to organize kitchen utensils and that made me cry.  So, what hope is there?

 

Maybe another year of healing?  My daughter will be 9 next Summer.  That's not too late?  

 

Thank you, @Rabe You are so kind to me. I wish you were not so far away.  My daughter wants to watch tv a lot.  She rarely sees friends.  I try, but it's hard to find a time that the other parents are not busy because they work.  We only have Netflix and Amazon Prime.  No network tv.  She only watches kids shows, and I try to turn them to Spanish frequently.  She has no close friends.  I think the characters on tv are her friends.  It breaks my heart.  The kids from school -- it's hard to see them.  Their mothers work, and they are in daycare in the Summer or with their grandparents.  We manage about one play date per kid per Summer.  Really.  Maybe we see someone twice in all three months.  I try to keep her active, but there is no overlap between the kids at school and the camps.  Last Summer, I tried to keep a full week open between each week of camp so that we could see her friends.  It wasn't good.  She was alone too much.  People didn't have time for play dates when she had no camp.  So, this year we scheduled a lot of camp time.  She needs the activity and socialization.  She is lonely.  

 

I was very lonely as a kid.  There were no Summer day camps.  My grandparents had no way to find friends for me.  When I was 8, my mom took me, and I went to school with kids who didn't live near me.  My mom made no effort to let me see my friends in the Summer at all.  It was only half an hour between home and school but not once did I ever have a play date.  My daughter's school is so close we can walk there.  I expected that to make this so easy.  If I were well I would be the mom who took in everyone's kids after school.  The playdate every day in Summer mom.  Maybe I'll get well.  Right now it seems that my daughter will be 10 before that happens. 

 

Thanks for your kind words, Rabe.  She was too little.  They have no memories from 3 and 4.  I barely have any except a sense of safety and love.  I'm so worried that my anxiety when she was 5 erased out that feeling of safety, but she does want to stay home.  She feels safe here I think.  She even notices that the memories from kinder have faded!! She tells me with sadness that she doesn't remember kindergarten.  She never sees those kids.  I didn't click with the moms of any of the girls.  There were two boys whose moms were very friendly.  I have managed to see one of them twice in the last two years.  She's very friendly, but she grew up here and has family here.  She doesn't need me.

 

My husband thinks that my daughter doesn't want to go out because she's been scarred by how traumatic it was when she was 5 and 6 for us to leave home.  My intense anxiety resulted in me melting down like toddler --crying and screaming -- when we tried to leave the house.  The cortisol and Akathisia.  I was afraid to go, but I was afraid to let my husband and daughter go without me, and I was afraid to be alone.  I thought they would die if I wasn't with them.  I knew that was irrational, but it was very real to me.   I thought we would all die or be hurt, but I needed to be with them.  That occurred for one whole Summer when she was 6, and it happened last Summer at times.  Getting her to school in first grade would sometimes be that way, but not too often.  Eventually, I was able to let them go without me and if I felt that happening I stayed home.  That was how I stopped it from escalating.  I was afraid to go out, but I knew they needed to go, and I pushed myself, but we sometimes had to give up.  It was so awful.  That's what she will never forget.  

 

You have no idea how afraid I am that she will have lifelong problems.  I feel so guilty, but it was Akathisia, and I could not control it.  Now that doesn't happen.  I hope she will be ok.  She will go, and she doesn't seem to be too upset about it, but it's hard to get her to go.  She really wants to stay home unless we are going to do something she wants to do.  Maybe she's normal?  I have such a hard time going myself that resistance from her can defeat me.  It's too much to have to drag her out when I can barely get myself together to go.  

 

Thank you, Dejavu.  I needed to see these messages.  I'm in a bad place.  It's now 5:12 am.  This wave is getting stronger.  I have never had my period this month, and it's probably time for another one in about a week.  I'm so weary.  Thank you for chiming in.  I know parenting is hard for everyone.  The neuro emotions make it so intensely painful.  I'm very, very lucky that my circumstances are what they are.  So is my daughter.  This could be much worse.  @Dejavu 

[Rosetta]

Note: Dystonia off and on.  I woke up st 3:00 am with it.  Last night, too. And I had it in the day on Thurs.

[wantrelief]

Dearest Rosetta - I am so sorry you are going through such an awful time.  It is good that you know you are going to get through this wave.  My hope is that once this wave passes you will experience greater healing.  You are such an inspiration to me and so many others here.  💗WR

[Rabe]

Hi Rosetta...I remember things from age 4...so do my kids...not a lot.  I do think kids are mostly in the now and then there is another now the next day.  Its forever changing....similar to what we are expereiencing...things are ever changing.  

I took my youngest son to a therapist when he was 8 because I thought he isolated in front of the TV ate a lot things after his dad left....didnt care about much really except eating junk.  He tells me he was waiting for his dad to call but he never did.  One doctor wanted him on an antidepressant. UGH!  I did not.  He is so lovely, so kind, so thoughtful, so intuitive....he really feels the world and those in it.  Of my three he is the softest, most honest, etc. and I think it is because he has always been a 'feeler'.  And from all he felt when he was young, much of it not what he would have chosen, he blossomed.  

Know that I am thinking about you and loving you dearly!!! 💜

[Rabe]

As I reread your posts....what pops out are seeming connections made between how your daughter feels, might feel, might be or become...and the feelings you had or have.  Do you feel that is happening?  Some projection and fears in that way?  
Im so thinking about you and hoping this wave and all the neuro emotions and thoughts subside soon!  Love you Rosetta!!💜