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

[Mimi79]

Dear, dear Rosetta!
Be gentle to yourself. I know this dark place where you are, It’s so hard, but remember, during this time, your CNS is healing. 

I don’t know if you’re able to read books in this wave, but I’ve just read the Baylissa Frederick’s book, « Hope in my hart ». She did a diary of her Benzo WD. Her WD last numerous years. This book gave me a lot of hope. In hard times, she kept saying to herself « The usual outcome for WD is recovery ». This is my new mantra.
 

I can relate with the fears you have about your daughter. I’m having the same issue with my two girls (10 and 14). When I’m in a wave, I see in their eyes that they don’t understand why mummy is so changed. So I explain to them that I’m starting a tough journey to free myself from ADs and the reason I’m doing this. They can understand. And don’t forget, whatever you do, your daughter will always love you unconditionally because you are her mother.

 

When I’m feeling bad, I’m happy to let my daughters go outside play with their friends in the neighborhood. I know we are in a pandemic, but I had to choose between my mental health and the mental health of my daughters, and the risk of having Covid19. And I found mental health was more important. I told to my daughters to be careful and keep distance with friends, and until now, no problems and no Covid. It’s good for my daughters to socialize with friends and it gives me some relief. It removes some pressure on my shoulders.
Of course, everyone should go at its own speed. 

 

I wish that you will feel better soon. Nurture yourself, make things that help you relax. Don’t expect the future, you’ll cross the bridge when you’ll arrive to the river.  Don’t put too much pressure on yourself. 

Take care 🤗

[Rosetta]

Thank you, @Mimi79  Today was better.  I did very little, but I did take a shower.

[Mimi79]

Good to hear! Small steps, it’s ok!

I’m starting a wave me too. How discouraging it is after 5 very good weeks. I will try to ride it as best as I can...

have a nice week-end...

Mimi

[ShiningLight]

Rosetta,

 

This sounds extremely painful. Do you go to couples, family, or even parent/child therapy? Maybe that could help the family cohesiveness.

 

It also seems likely that your daughter is aware of hubby's and your interaction problems which is causing her to align with him, and in a child's uncomplicated way see you as the bad guy. In other words it's not all coming from your daughter. She's picking up on and mirroring your husband's feelings about what's going on.

 

I'm single and alone and this way is painful too. Somehow in this life there's always pain.

 

I hope your day is a little brighter today

[Rosetta]

I’m still having dystonia if I use my right hand to type or if I read.  I’m still having cortisol spikes in the morning.  They are less intense.  

I’m still anxious, but there have been no meltdowns.  I feel depressed and unmotivated.  I did manage to buy a Father’s Day gift last week.

 

@ShiningLight  No, we don’t go to therapy.  Thanks for the suggestion, but I don’t think that a therapist would understand what’s happening to me.  It would be money down the drain - a lot of money down the drain.  I don’t think it’s the therapists’ fault, but they can’t help people if they don’t know what is wrong, and they can’t believe that the problem is PAWS. 
 

I tried therapy over and over, but it didn’t help, and now I know why: WD prevents me from making any progress.  My brain isn’t rational.  It’s jumping around from one thing to another.  Anxiety comes, anxiety goes.  For years, I could not remember enough to make anything I learned work.  With every change of medication I got worse.  I’m not even the same person from day to day when I’m in a long, hard wave.  I couldn’t see spending that money when we could spend it on sending my daughter to camp in the Summer so that she could have time away from me.  Now we don’t have that option, of course.
 

If I found a therapist who had been through WD maybe therapy would be useful.  My poor husband needs a therapist who understands this syndrome, I know that.  I’m not hopeful we would ever find one.  Maybe I could find a book for him.
 

My daughter doesn’t know what to think.  My husband is affectionate and kind to me even the very afternoon after I have had a bad morning, and we have argued.  She sees that.  She usually gives me a hug soon after everything has calmed down.  It kills me that she sees our dysfunction, but it’s good that she sees we still love each other on the same day.  I think anyone who believes they are hiding it from their children by not even talking to each other is fooling themselves. Not to mention, there’s no way to keep anything from her when it’s just the three of us with no school and zero time alone.  We have tried, and that makes her very upset.  I just have to keep trying to arrange my life in a way that the impact on her is lessened, but this coronavirus has scuttled our options.  She has no camp.
 

My emotions are all over the board.  I go from interested in something to anhedonic in one day, from curious or excited about doing something to incapable of even cooking in one day, from etc., etc., .etc.   Throughout the month my personality changes.  I’m trying to track it, but it isn’t very consistent at least not in a way that allows me to plan for it. The stress is building.  
 

I’m back to having no appetite, feeling anxious about doing laundry, feeling overwhelmed by the clutter, but having moments when I want to create an original LEGO set for my daughter.  I know I won’t be able to follow through.  I bought a bunch of pieces to make something a couple of months ago, but I haven’t been able to get the final few pieces to make it work.  I haven’t been able to focus, and my creativity had been dead.  I think I could find work arounds for the missing pieces if  I could come out of this wave.

 

My house is getting even more out of control.  I keep trying to get up the courage to tackle even one small part.  Fifteen or twenty minutes of sorting exhausts me and makes a meltdown more likely.   That’s the real danger.  So, I don’t even start.  
 

My plan to put everything in bins and then sort through the bins is still there in my head.  I think it could work if I could quell the anxiety long enough to get it all in bins.  When I’m putting it in the bins, I start to panic that certain things will be lost forever if I just dump all sorts of things into one bin. I start to try to sort them between more important and less important, and then the plan goes off the rails.  Often, I simply create a bigger mess.
 

This is my life.  I have to make the best of it.  I used to do that by going somewhere away from all the clutter where my mind felt more clear.  I can still go to the park.  Anywhere that other people have organized (or not) feels better to me.  Even if there is a mess, it’s their mess, not mine.  
 

Even my own yard feels uncomfortable.  There is always something that needs to be taken care of.  I have projects all over the place half done.  When I was on high doses of Zoloft, I had a lot of creativity.  I still remember the projects, and I have some of the materials.  There are many things I could do this Summer if I could get through this wave and another would not come along, but I know another will come.  
 

[ShiningLight]

I understand your disinterest in seeing a therapist. I found that therapy was not very helpful to me when I tried it when my symptoms were acute and severe. For the same reasons that you state--the therapist didn't understand and kept trying to "help" me process things deeply, when what I needed was here and now support. It was NOT helpful! In fact it was approaching harmful, since I had to keep educating her on what was going on with me and what I needed. I ended up firing her and I don't regret it.   

 

I was thinking that what a therapist may be able to help with in your situation is addressing communication, adjustment, and compensation for the impact of your symptoms on the family system. I don't think the therapist has to understand or agree with the cause of the symptoms in order to do that. However, it would take an exceptionally skilled family or couples therapist, probably someone with expertise in helping families adjust to the changing impact of medical conditions/brain injuries.  I totally understand if that doesn't feel worthwhile to pursue.  

 

I have found support, fellowship, and understanding in a local support group for people recovering from brain injury, because of course that's what this is. They have separate programs for people with mild and moderate injuries. I'm the only person there with iatrogenic brain injury, but they accept me. Maybe looking for some local supports for people with brain injury would be helpful. 

 

I hope it isn't bothering you that I am offering some ideas. You describe the pain so articulately. I wish that I could offer something that would help lessen it. I keep feeling that support of some kind might help, and I believe that you deserve more of it. I see it as an injustice that you don't have it.

[Sheera]

@Rosetta We have had the same exact situations within our family dynamic as well, Rosetta and it is terrible. The up and down mood swings from hour to hour and the intense emotions and lack of them is so difficult. I don’t know if this is helpful but I just recently started to feel motivated again. I got about halfway through a project and then entered a wave. I pushed through to completion but it made me angry to not be able to enjoy the whole thing. It was a creative project that felt like such a chore at the end. This is hard work. I know you will make it to the next window. Your brain is healing and the next one will be the best yet. Also, Covid is just making all of this worse and even though it feels like it will last forever, it won’t. You will be healed and free. ❤️ Hugs to you, friend.  

[Rosetta]

@ShiningLight It’s very kind of you to offer suggestions.  I really appreciate it.  Yes, if there were a couples’ therapist who could help with communication that would be nice.  I never thought about a support group for brain injuries.  Good idea.  Thanks for trying to help.  It is always good to see that someone else cares.  That alone is sometimes enough to push through.
 

@Sheera  I’m sorry you are dealing with the same issue.  It’s so demoralizing.  Good for you getting the project done.  I’m glad you could.  Thanks for your support.  It makes me feel less lonely and sad.  It really does.  

 

[FarmGirlWorks]

On 6/21/2020 at 9:49 AM, Rosetta said:

My house is getting even more out of control.  I keep trying to get up the courage to tackle even one small part.  Fifteen or twenty minutes of sorting exhausts me and makes a meltdown more likely.   That’s the real danger.  So, I don’t even start.

So hear you on this, @Rosetta. My place was much, much cleaner and organized when I was on Zoloft (and smoking pot). Ironic. I did a lot of cleaning last Wednesday and wore myself out to the point that I could barely move for two days. Then I went into a wave. It's less intense though and I pray that it ends soon.

 

And I hear you on therapy. I have one now for a specific situation unrelated to WD but the two therapists I tried last year were useless. It's chemical and one needs a bit of stability to be able to make use of it. And yeah: it is a pricey venture so we want it to "work." I think you're making all the right choices here. Maybe there is a brain injury support group online?

 

👊❤️👊

[Rosetta]

Thanks for stopping by @wantrelief  That’s kind of you.  Yes, perhaps there is one.

 

I’m feeling better.  I really need to be off this roller coaster.  I feel that I have no control.  Even when I feel better I know it won’t last.  I’m trying to enjoy this time anyway.

[Erell]

Dear Rosetta, 

 

don't know how but I missed your post on  my thread !
So funny that you dream in French ! I thought I would dream in English after spending months on SA, but didn't happen

Wow, you did travel in many French region !
 

I'm glad to read you're feeling better ❤️ 

And understand being tired of this rollercoaster ! It really feels like it will never end.

 

Something I love about Success stories : people who went through WD and healed often say that they didn't think they would heal either. While going through intense windows and waves, they were convinced they would never heal. And guess what ? Years later, they are writing a success story ! ❤️

It seems that everydoby does heal.

 

Hang on, our reward is coming !

 

 

[Elyssa143]

@Rosetta

just a quick pop in I was thinking of u as I was researching my deficiencies. Come to find out I’m pretty deficient in COq10 plus many others. Come to find out it’s one of the things that are severely depleted due to meds and our poopy lifestyle not something drs test. I paid a lot of money for the spectracell test. But I’m telling you because you struggle with dystonia and that’s listed as one of the number one deficiency symptoms. Who knows maybe it could help? I’m just throwing it out there. I hope your doing better. I was doing better before this last wave and as always scared about the suicidal intrusive thoughts, feelings and Akathisia. I’m 28 months into this and 2 years completely off all meds even over the counter. Really hoping that stuff lets up here soon. Slowly working on some of my deficiencies hoping that helps too. Hugs to you

[Rosetta]

I’m all right.  Not great, but all right.  I’m still having cortisol awakenings around 2:30 am.  I was up until 5:30 this morning. I’ve been awake since 7:50 because my phone rang.  
 

I feel pretty down.  We spent a week at my MILs, and I felt better there.  Now we are home again.  I’m surrounded by clutter.  It’s difficult.  Maybe I can take some baby steps to fix it, but I’m very busy with my daughter when I have any energy to do anything.

[Rosetta]

@Elyssa143 @Erell @FarmGirlWorks

 

Thank you for stopping by.  It’s so nice to get a little comment.  It’s like getting mail.

 

Two nights ago I had very bad dystonia that was painful in my right temple and jaw.  I used a heating pad to fall asleep.  That hasn’t happened in a while. Two nights prior to that I had slept until 5:00 am for two nights in a row!  (Instead of waking around 2:30 or 3 and being up until 5 or 5:30.) That was nice.  Then I had a night of waking around 3 and being up until 5.  The next night I woke around 3:00, and I didn’t sleep again until the next night.  Tonight is another night of waking at 3:30.  It’s now 4:15 am.  
 

I have had clumsiness and flashes of anger recently, too.  Otherwise, I’m not doing too poorly most of the time.  I have moments of deep sadness that pass and moments of anxiety that pass.

 

I’m trying to walk and exercise to improve my sleep.  I’m trying to eat better.  During the last wave I wasn’t walking much or eating well.  I was just holding on.  I had a lot of anxiety during that wave, poor sleep, hot flashes and sweating at night, flashes of anger, meltdowns, and lethargy.  

Right now, I’m doing better.  I just wish it could last.  I wish this could be over.  My life is sad due to the knowledge that another wave will come, and I’ll have anxiety again that affects my daughter and husband.  It’s hard to enjoy this calm time when I know my brain will hijack my life again.  I’m trying though, and I’m very grateful for this time.

 

 

[Elyssa143]

@Rosetta

good to hear from you. I’m glad you are better. Have certain things improved for you? I understand the fear of when the other shoe will drop I understand feeling like it’ll never end and it’s awful  I have easier times and times where I’m definitely more positive and I function better. But I still suffer with the suicidal stuff. Intrusive thoughts, depression and the aka inner and the dread feeling of life not being worth it and feeling of wanting to die. I get scared this is permanent and none of it will leave. I am trying to work on my deficiencies and hope that helps even a little. I’m 28 months out now. I just really wish the really bad stuff would go. Does your baseline Atleast improve? I sure hope so. How’s it going as far as school for your daughter? Are you sending her back? Is your suicidal and akasthia better? Hugs to you!

[Rosetta]

Thanks, Elyssa.  I wrote something similar to this on your thread:

 

I’m at 41 months - 3 years, 5 months.  

 

Please don’t lose hope.  The timeline is completely different for everyone.  It’s very possible you will recover faster than I have.  

Life without aka is so different.  I have it during a wave, but it isn’t constant.  It manifests as a mental anxiety issue in the morning and as restless legs at the end of the day, and it’s generally pretty mild compared to before.  
 

I had a bad wave recently, and everything intensified, but I had only one or two days with brief periods of SI.  It wasn’t there all day, and it was mild except for about 1-2 hours on one day.  When it was gone, the wave started to improve.  Mental aka was the worst part of that wave.  Intrusive thoughts less so.
 

Now, I feel I’m living pretty well.  I would say that I’m having the same problems as people without WD have except that there is a fair amount of emotional scarring from the ordeal.  I’m aware that another wave will come, too.  I have a lot of things I have not maintained - friendships, my house, my physical health.  I think much of my unhappiness stems from those issues rather than active, mental WD symptoms themselves.

 

You will find some peace when you get to the point that you have longer periods between waves.  You will start to believe in recovery in a way you didn’t think possible.  Hang in there.  It is so worth it to keep going!

 

Each wave will get less intense over time.  You will have a few here and there that are more intense.  That is very demoralizing, but you have to remember that the next should be much less intense.  Some people call these the 1 year, 18 month, 2 year, or 3 year wave.  I think I just had a 3 1/2 year wave although it came early.  

[Erell]

Rosetta,

 

I'm so glad to read that you have some relief...

And I thank you for this post full of hope ❤

[wantrelief]

Hi Rosetta - Thank you so much for your message on my thread and for thinking of me...it means a lot to me.  I've been thinking of you too so we must have been thinking of each other around the same time.....I like when that happens.  I am heartened to read that you've had improvements....you so deserve some peace.  💖

[Gridley]

@Rosetta

 

I'm very happy you're doing so much better.

[Dejavu]

Great post, Rosetta. It's nice to know you're seeing such improvement. Hugs!!

[Rosetta]

I wrote this to someone, and I’m placing it here, too:

 

SI is very infrequent for me now.  Do not lose hope that it will stop.  It will.  Someone asked me to describe SI.  That is hard when I’m not experiencing it.  It’s a feeling of deep despair, and the thought that nothing will ever be ok again is a big part.  Constant terror was a large part of SI for me.  I no longer feel terror.  That is gone.  I sometimes feel afraid, but it’s not terror, and it passes quickly.  I’m not afraid to be alone; I’m not afraid to go out either.  I still have anticipatory anxiety if I have something to do.  Not all the time, but, to some degree or another, most of the times I have a commitments.
 

SI was so perplexing — maddeningly so.  I knew I didn’t want to die.  I was afraid I would die in various ways, but I was also afraid of being the cause of my own death.  This was so hard to understand, because I didn’t want to die. The fear that I would do that to myself was something I had never, ever thought possible.  Anytime I had depression before there was never outright fear of doing something I did not want to do!  I did not want to die, but the thought that I wanted to die was a very frequent intrusive thought.  
 

There were a few times I wanted to die when I had a particularly difficult day that my husband could not handle well, but most of the time what I wanted was for the emotional pain to end, and I saw no other way for that to happen.   If you think about it, you will realize that is also true for you. There is another way!  You must believe me.    You cannot go around.  Going through is the only way, and it’s hard and awful and miserable, but you must see it as a viable way.  

You must believe me when I say I am glad that I went through instead of around, because going around means there will never be any future.  I am living in that future, and it is not yet a full life, but I do feel pleasure now; I do feel joy; I do live. I just have periodic timeouts the timing of which I have no control.  I promise you, I am grateful for this life however disappointing it may be at times.  This morning I made muffins.  I can cook sometimes; I can enjoy a walk; I can enjoy my child.  

 

I think SI is caused by a combination of the brain being in an unnatural state AND the fact that one is “just surviving” while not experiencing any pleasure or enjoyment (anhedonia or worse).  This is happening because the brain is not operating properly in the wake of the drug.  The same is true of aka.  In fact, my belief is that aka causes suicidal thoughts independently of it causing restlessness or pacing or a vibrating feeling in the limbs.  This is based on having experienced it over and over and over for many years now.

 

You must never cut yourself off from your future, because your future is bright.  Do not let your brain tell you otherwise!  Our brains are constantly talking to us even when we don’t realize it.  I used to think this was something odd about me, but it’s a normal human occurrence.  What the brain says to us is what can help or hurt.  When we are in WD the brain says a lot of negative things.  The key is to distract yourself from your negative thoughts.  If you can turn your negative thoughts into less drastically negative thoughts that, too, will help.  Banish “always” and “never.“  All or nothing thinking is a huge part of depression and a huge part of WD.  Nothing is always or never true.  You know that.  Don’t let your malfunctioning brain tell you otherwise.  Talk back to it!
 

It’s maddening that this syndrome can’t be fixed by simply providing the drug again, but it’s true.  The “chemical” feeling comes from the fact that you can’t make sense of your thoughts and emotions, I would say, but there may be something more to it such as depersonalization.  It’s so bizarre.

 

What you are feeling and experiencing is “normal.”  It IS normal for this state of PAWS (or dysautonomia) which we call withdrawal or prolonged withdrawal syndrome.  You aren’t an outlier, but it is never going to FEEL normal to you.  
 

It is absolutely logical to deduce that because you are not seeing improvement this must be permanent for you.  Because our experiences with every other illness or injury have shown us that healing happens within 20 months, we can’t wrap our minds around this syndrome.  I had all the same doubts as you do.  Those doubts sneak in during a bad wave, too.  Will I go back and forth between feeling normal and periodically declining into madness for the rest of my life?  I know the answer is “No,” but it’s still hard to remember that in a bad wave.  In a milder wave, I can remember it.
 

I have seen people write the opposite of “mental issues go away first” many times.  Instead, a lot of people say that they go last.  I think the truth is in between.  People focus most acutely on things that disturb them most, of course.  Some people have aka and some don’t or at least it’s a very mild aka. When aka goes, the most terrible emotional states will go.

I have seen no evidence that the longer the symptom lasts the more likely it is to be permanent.  All of us will heal.  ****I think that what causes very long periods of WD is re-injury.  This is my focus: avoiding re-injury.****

I decided long ago that being “re-injured” is the main way that people suffer WD that lasts a long time.  I combed through thread after thread on SA of all the people stating that they were having years of WD.  Almost every single one had either tried to reinstate the drug, tried a new drug or had made some unfortunate mistake by taking a drug or drinking alcohol.  Re-injury can happen with the use of over the counter drugs, alcohol, and of course, prescription drugs.  Steroids, adrenaline based numbing agents at the dentist, and alcohol seem to be the most common substances to prolong WD, in my opinion.  
 

Dysautonomia can be slight and easily correctable by our bodies or very deep.  It can take a long time to correct, but almost always the key is letting the body heal itself.  Once someone is in WD and outside the safe time period for reinstatement, I feel that avoiding re-injury is the best plan, and I believe it works 99% of the time.  This is what SA means by a harm reduction approach — for those who are tapering small reductions are advised and for everyone — on or off the AD — being very careful with what we put in our bodies is imperative.  (Reinstatement has a place for some people soon after quitting or reducing a drug.  That’s not a subject I’m addressing here.)
 

I made a lot of mistakes before I found SA.  I missed doses, I increased the AD too much, of course, and I took Zanax here and there, also on the advice of the doctor.    I thought that by being careful to avoid addiction to Xanax I would avoid it’s harm.  Wrong!  My state of dysautonomia meant that Xanax injured me every time I used it.  The same is true for when I drank wine.  
 

Eventually, I quit 150 mg of Zoloft over a very short period of time — about six weeks perhaps.  I did this because I was experiencing dysautonomia.  I felt so bad that I thought that the drug was causing me to feel bad. I didn’t know about SA.  So,  my nervous system was all ready severely compromised before I was prescribed Trazodone afterward.  Taking a new prescription caused further destabilization of my nervous system, and every time I too Xanax, my system became further destabilized.  Finally, I quit all prescriptions at once.  I had no idea it could get worse - so much worse!

 

Since I found SA, I have improved my health a lot by avoiding new prescriptions and alcohol, making sure the dentist gives me a non-Adrenalin numbing agent, and walking.  Walking is very important for everyone, and it seems to help unless I’m in a deep wave.  Maybe it helps then, but it seems as if it doesn’t.

 

You will heal.  I am living proof.

[wantrelief]

Thank you for sharing this, Rosetta....much of it resonates with me as I experience some similar things, especially around SI, negative thoughts and doubt/fear.  I also feel like I am just surviving everyday which does not help any of the aforementioned.  You have a way of describing things that I can't find the words for and I appreciate your putting words to my own experience.  Most important is your message that you are healing, that we will all heal.  It is so very hard to feel this when this is one's constant state as it is mine.  I want to survive this as you have so bravely.  Thank you for being here, Rosetta. You are such an important voice on this forum.  💖

[Rosetta]

Today wasn’t so good.  I felt very down around 7:00 pm - overwhelmed, frustrated, lonely.  I had gone for a walk around 5:00.  I had been up in the night for several hours and then slept from about 6:00 to 9:00 am.  Being without any social life is hard. Living in all this clutter is hard.  
 

Realizing I may be teaching my daughter indefinitely is very demoralizing.  It’s very hard.  I am unhappy with our progress many days, and it brings my mood down so low.  

[Erell]

16 minutes ago, Rosetta said:

Today wasn’t so good.  I felt very down around 7:00 pm - overwhelmed, frustrated, lonely.  I had gone for a walk around 5:00.  I had been up in the night for several hours and then slept from about 6:00 to 9:00 am.  Being without any social life is hard. Living in all this clutter is hard.  
 

Realizing I may be teaching my daughter indefinitely is very demoralizing.  It’s very hard.  I am unhappy with our progress many days, and it brings my mood down so low.  

 

One thing I learned with WD is that everything is temporary ☺

Hang on dear ☀️

[Rosetta]

I’m feeling manic or something.  My heart is pounding; I feel a bit of stomach upset.  It’s a different feeling from a cortisol spike feeling.  My mind is racing, and I feel that I want to do something that’s important or special.  I’m having memories and f time when I was especially astute.  This happens every so often.  It happened Sunday evening for a short while.  It doesn’t upset me the way it used to because it doesn’t last.  I don’t have time to do anything silly, but it is very unnerving.  
 

This feeling is making me worry that I’m going into a wave.  I am sure I am, but I still have hope it’s not a deep one.  I’ve been up since about 4:45 am, and it’s almost 6:00 now.  That’s better than being up from 3:00 to 5:00 or midnight to 6:00.

 

Thanks for stopping by, @Erelland @Gridley

[Rosetta]

Night before last, sleep was very difficult with multiple cortisol spikes before 4:00 am.  I finally gave up trying to sleep.  I fell asleep again and slept until 9:30 am. The day after was not very good.  I felt off, irritable, and quite unhappy.  My husband was in a terrible mood most of the day.  My daughter was very emotional, too.  I got no exercise.  I didn’t even walk,
 

This past night, sleep was better.  I got to bed very late: 11:00 pm.  It is now 5:30 am, and I have slept about 6 hours straight with no cortisol spike.  I’m awake quite early, but it’s nice to have no spike.

[Elyssa143]

@Rosetta I’m sorry your slee is still tough. But the fact that you slept 6 hours and no cortisol spoke is quite an improvement. How are you feeling overall? And when your in a terrible mood is more so life moods up and down or still chemical?  At  about 28 months off we’re you still in pretty rough shape? And what you wrote about SI is me exactly 100% it was so nice to see someone else understand and put it in words as I feel all alone in that symptom. When did that really start to go for u and not be an everyday thing? For me it’s still pretty much everyday my symptoms are to one point or another I’m never symptom free. Did you still have dread in your stomach then or do u now? I still have pretty negative brain chatter daily but again to one point or another. It’s just tiring and of course I’m still scared I’m looking to get to a point where I’m confident in recovery and things aren’t so bad. Are you homeschooling your daughter? Or sending her to school? I’m going to homeschool so that’s a whole other stress. I do hope today is a decent day for u. I am trailing right behind you. You’ve been a guiding light for me and I cannot wait to read your success story! Hugs to you Rosetta

[Rosetta]

Elyssa, I just wrote a long, long, long answer to you, and it disappeared.   I can’t get it back.  Undo doesn’t work.  I’m sorry you are feeling so bad.  My timeline won’t be yours, but I was at 28 months around June/July of 2019.  I started feeling much better in September, then got worse, then better, then worse.  Now I’m better.  I know you are so tired.  It will get better.  That I know.  @Elyssa143

[Rosetta]

Today is Monday.  My last post was on Saturday.  I just spent four hours over two days combing dread locks out of my daughter’s hair.  When I gave up on it last night, I felt pretty distraught. I had only cleared about 1/3 of the tangles.  It’s very tedious work.  I don’t see well.  Normally, I keep her hair braided.  I’m trying to be grateful I was able to get the tangles out.
 

Trying to teach a child to be independent while fluctuating between windows and waves and cortisol spikes and trips on the emotional rollercoaster is not for the faint of heart.  I can’t stay on top of things.  I can’t nag her to comb her hair.  I can’t keep the laundry done either.  I can’t set a good example.  I do make her brush her teeth.  That failure can’t be fixed so easily.  I have to choose the lesser evils.
 

I’m feel that I’m wading through a mire, endlessly, while beating back the crocodiles as they surface, and never making much progress toward firm ground.  Much of the time I’m sitting on the couch resting after exhausting myself mentally by trying to do just about anything.  It’s not the same physical exhaustion I used to feel.   That was worse indeed.  It’s much more a mental exhaustion.  I feel physically exhausted after about 8/9 pm.
 

When I look at what I can’t do I realize how much more I can do than I could do before.  I am so much better than I was two summers ago.  I’m not sure I’m a lot better than last Summer in terms of what I can do physically, but I am much better cognitively.  I don’t think I could have taught my daughter last Summer.
 

Most days all I can do is:   
 

schoolwork,

cook, 

clean up after a meal, 

walk
 

Some days I can’t even do that.  The schoolwork is very taxing.  I am mentally and emotionally exhausted by that.  Some days that’s just about all I do besides make lunch.  

 

I wash my hair about once a week.  I can’t strip the bed every week.  I can’t do any other housework.  I might do laundry once every 2-3 weeks, and if so, it’s one to two loads.  My husband has to do most of the housework, poor guy.  A lot just doesn’t get done.  This is not how I want to live, but for now it’s the best I can do.
 

Getting to the clutter is nearly impossible.  I make little dents here and there, but they don’t last.
 

I thought I was doing pretty well the last week, but when I discover that I have let something go — like keeping my daughter’s hair combed and braided — I realize that I was not doing so well.  My husband has been saying that he sees me slipping into a wave again.  He says that when I get clumsy he knows I’m slipping into a wave.  He says the anger comes after that.

 

I’ve been rather clumsy lately.  I burned my arm on the oven quite badly about 5 days ago.  There’s a spot about the size of a pea that is a second degree burn.  The rest of it that is the size of two nickels is first degree.  I haven’t gone to the doctor because it seems to be healing.  I accidentally ripped the scab off the middle,  which is the second degree part, last night.  I haven’t fallen.  I’ve come close.  I keep knocking things over and dropping things.
 

My daughter and I have been getting along well, and I was able to play with her yesterday.  That is so rare.  I wish I could play with her every day.  She is 9 now.  She was 5 Years 9 Months when I quit Zoloft, Xanax and Trazodone.  It will have been 3 1/2 years next months.

 

We have been trying to get through her English Language Arts school work.  I have her caught up with what she missed last Fall, and now we are trying to complete what she should have learned after the March closure due to Covid.   We did almost everything the school sent us to do, but there was a lot her teacher did not send us.  There was no grammar, no phonics/spelling, no guidance at all regarding the point of each reading passage or writing assignment.  Now that I have taught her with an understanding of the curriculum and with a teacher’s guide, the reading and writing assignments make more sense.  We have about three weeks of work left to do.  
 

I’m glad that we worked on the ELA this Summer because I feel much less stressed about the Fall schoolwork.  I think she’s going to be more comfortable with it, too.  It’s still boring sometimes and tedious, but we have developed a relationship as teacher-student that will help us get through the Fall.  It was miserable to get to this point, believe me, but being past it, I think the teaching and learning experience will be better and easier.

I may not try to complete the 3rd grade math.  I’m afraid the school will start that on subject where her class left off in March.
 

I want to do crafts and science with her.  I keep hoping I can find the energy.  I want to build a slip n slide for her.  I want to build a treehouse.  I want to take her camping, to see the Sequoias, to see the stars and to see the comet.  I want to teach her to build a fire.  There’s so much I want to do with her before it’s too late.

 

I suppose I should be grateful that I have all these desires.  I could be anhedonic instead.

 

Night before last I was awake for a long while in the night, and then last night, I slept well until 5:30 am with only a couple of wake ups.  I had a strong cortisol spike at 5:30 that caused me to wake in a panic. I was able to go back to sleep after that.  

[Elyssa143]

@Rosetta

hello my sweet friend. I know your not feeling the best and I know you can’t keep up with everything you want to keep up with but you are noting that you are much better. I can relate and I can relate to the stuff with your daughter as I have two kids and feel like an awful mother. My house is not as clean as I would like either. Physically it’s a lot to keep up with. I also have my dogs and raising puppies so I’m literally always busy and it’s saving my life. Right now I can’t keep up with everything in the house I try to be gentle on myself with that, easier said than done. Honestly I find myself saying, Atleast I’m alive. The other stuff is just stuff as annoying and irritating it is to not be super clean an organized I do my best everyday. The mental stuff for me is still a daily struggle so I note that as well. You are healing and I think maybe I’m wrong but I think your in a place where your doing more normal life and normal things are becoming more frustrating and that’s a huge stage of healing! Like now your upset you can’t finish your daughters hair or make a dent in organizing you know? Before it was just getting through the day. It’s hard to see I understand 100% but your healing. And this time next year you’ll be able to do so much more. I’m so glad to hear you got to play with your daughter. My fiancé wrote me this morning and said it was so nice to see me laugh last night. I think part of this journey is learning how to take the teeny tiny accomplishments and be “proud” of even the little things! I’m no where near where you are. Mentally it’s still very hard, I’m looking forward to the day that I’m confident in my healing & the suicidal and akasthia stuff is gone completely. Hugs to you

[Rabe]

Hi Rosetta!  I have SO missed you!  I am working on a new computer.  In the mean time someone nearby in this building has allowed me to use hers now and then which is so kind!!  Im so grateful!!

On 7/20/2020 at 7:35 PM, Rosetta said:

 I’m trying to be grateful I was able to get the tangles out.

I was wondering if you have ever used a detangler on your daughters hair?  I didnt even know there was one.  My daughter uses it on Evie's hair and it is unbelievable how well it works!  I was amazed!!  I dont know the name of it but I can sure get it for you if you'd like.  😀

On 7/20/2020 at 7:35 PM, Rosetta said:

I make little dents here and there, but they don’t last.  

On 7/20/2020 at 7:35 PM, Rosetta said:

I can’t keep the laundry done either.

 

I can remember when just the thought of trying to declutter or do the laundry was too over whelming, much less making a dent.  Do you remember?  Im so excited about your dents and your laundry!!

 

On 7/20/2020 at 7:35 PM, Rosetta said:

 I burned my arm on the oven quite badly about 5 days ago.  

Im so sorry Rosetta!!  I burn myself in this oven nearly every week! I know they hurt! I did finally get one of those mitts.  

You dont want it to get infected though.  I use Emu Oil on my burns and just about everything that is sore.  It is a miracle oil truly and has been used on burn patients.  I get it from Olivu online.  I healed a cellulitis in my big toe after bumping it badly with the oil.  The doctor couldn't believe it.  She had wanted me to take antibiotics.  Do you  think the clumsiness could be a later part of the healing?  Because I dont remember you mentioning it in r/t waves before? 

 

On 7/20/2020 at 7:35 PM, Rosetta said:

My daughter and I have been getting along well, and I was able to play with her yesterday.  That is so rare.  I wish I could play with her every day.

This makes my heart sing!!!   💞

On 7/20/2020 at 7:35 PM, Rosetta said:

There was no grammar, no phonics/spelling, no guidance at all regarding the point of each reading passage or writing assignment.  Now that I have taught her with an understanding of the curriculum and with a teacher’s guide, the reading and writing assignments make more sense.  We have about three weeks of work left to do.  

Most parents wouldn't recognize this much less figure out what to do to correct it!  I think that is so so wonderful Rosetta....you are truly amazing!!  That whole thought was so clear and strong and positive.  Seems when you are teaching/working in that part of your mind you sound so confidant and strong.

 

On 7/20/2020 at 7:35 PM, Rosetta said:

I suppose I should be grateful that I have all these desires.

Yes!!  I was thinking the same thing...how wonderful it was that you were WANTing to do so many things!!  I hope I get to that point!!

 

On 7/20/2020 at 7:35 PM, Rosetta said:

This is not how I want to live, but for now it’s the best I can do.

From what I have read along the way you have ALWAYS done your best and far far more, Rosetta.  And I have always thought you to be such a loving mom, wife, friend ....and a most special person!  Blessings and love to you!!  Hope you sleep well!💜

[Rosetta]

They multiple, nightly cortisol jolts continue over and over.  During the day, I am ok, usually.  I had a day with high anxiety recently, but the last few have been better.  
 

Life isn’t bad except in the night and right after wake up in the morning.  It’s hard to get going in the morning.  I often think that if I got up instead of falling asleep again, and having another cortisol spike, I would feel better over all.  I don’t do that.  I try to get more sleep and my sleep is so broken. After a spike, I have a hot flash, and then I get very cold, it’s hard to fall asleep again, and the cycle repeats.  At least my days are ok.  I’m not anxious this morning, for instance.

 

I have not been having much dystonia lately.  I’m not depressed.  I’m not anhedonic.  
 

I am, however, lonely, but it’s circumstantial.  I don’t feel lonely-depressed.  No one ever calls me.  I have no friends.  That is probably the worse part of the pandemic for me.  The friends I did have are gone.  They are living their lives, ignoring the pandemic, and never make any effort to say hello.  I try to message them every so often, but because it’s always me making the effort, I get discouraged.  They respond, but then the silence begins again.    That’s the way it is when I live in a place I don’t belong where the people don’t share my values, I suppose.  They weren’t really friends.  That realization makes me sad.

 

I have a couple of people who could become friends.  I’m working on those relationships, and I know that if I keep trying there’s a chance there will be a friendship there.  They are both so afraid of catching Covid that it’s hard to get together, but we do sometimes.  Their kids are friends with my daughter.  That’s what’s important - that she has friends.

[Rosetta]

So, here’s the positive part:  I flew a kite yesterday.  I got it aloft, and then I gave it to my daughter.  That was the first time she flew a kite.  She loved it.  We were at the beach.  She had been swimming with her father.  I wish I had pictures.  

[Rosetta]

@Rabe I’m so happy to hear from you!!!!!!!!!!!!!!  You sound as if you are better.  That is wonderful.  Everything about your writing indicates you are healing.  I’m so happy to see that. I can’t wait to see more of your posts.  I hope you can get the computer soon.  I use a smart phone for most of my posts.  Maybe you could check that out.  
 

@Elyssa143  Aww, thanks for your encouraging words.  I really need those sometimes.  I DO have friends!  They are here.
 

 

[Rosetta]

Having fairly intense cortisol awakenings.  Last night, I was up for quite a while Until about 5:30 am after several nights of sleeping until 5:30 am with only short periods of wakefulness.  A cortisol  awakening happened again at around 8:00 am.  Then I was quite anxious for hours.  it was around 1:00 pm before it stopped.

[Elyssa143]

@Rosetta

im very sorry your having such a hard time with the cortisol mornings :(. Sounds like your adrenals are really trying to adjust? Do you take any vitamins or supplements? I’m having a really hard time with the akasthia  29 months this week, really praying that lessens for me and the suicidal goes soon. Hugs to you-