KaiLee: Immediate adverse reaction, withdrawal, confusing and terrible symptoms

[KaiLee]

I am extremely sick.

That good feeling has only lasted for about a minute. Maybe just for a few seconds. In fact, it wasn't even a real good feeling.

Is it okay that my symptoms are much worse than ever, even then the first few months when I didn't have any cognitive ability left in me? I was 'disabled' in so many ways, but compared to this, that period somehow seems better. Maybe I am only being silly but, is this relatively common that my symptoms to go through this?

I feel I have made so many bad decisions rather than taking a good care of myself, which I had to.

I should've done so much better. I had some good hopes.

I ruined it myself.

[KaiLee]

I guess I was trying too hard to know what's going on inside me.

I must learn how to let it go.

[Kaylaq]

I understand that feeling of making bad decisions, but we can only do with what we know at the time.  Be kinder to yourself! One day at a time, or one minute at a time! 
 

I send you strength, courage, & love.. to live another day! 😊👍🏻💗🙏🏻🙏🏻

[KaiLee]

@Kaylaq 

Thank you...

Thanks a lot.

[Boges11]

Hugs give yourself is much grace bc it’s so hard to know what’s what and figure out during it all what is happening. If medical community around us was more informed and could help and say yes stop this don’t take that this is adverse , no more piling meds in, etc etc that would help us. But instead we are left to become our own dang experts in a very challenging situation where we don’t know what end is up. 
im so sorry and please hang in there. This stuff is brutal, aka is inhumane and im sorry you have it. It does fade and more time off meds and everything is good for it to stop so hang in there cope best as you can, reach out on here and other support groups. Angie peacock is great to connect with as she has lots of aka clients and so it’s nice to talk to someone zoom or phone that gets it. 
other coaches are great too. 
https://calendly.com/apeacockconsulting
Jenn Swanktowski has YouTube videos that are great and break this stuff down and coping tools, etc.

https://m.youtube.com/@jenniferswanphd/videos

[KaiLee]

I have seen some of my old posts, and now I can see why nobody was replying to my post. It's way too hard to understand.

But that was just how terrible I was at that time. I wasn't able to hold thoughts for more than 3 seconds, I could not figure out how to solve 3+4, and I couldn't remember what I have just ate.

Thank you again @KenA, for stepping in my terrible mess and giving me a lot of kind advice. I must say I am at least better than I was before. And I will get better. I have been getting better very slowly lately.

Thank you for everyone else. You all have been so kind to me.

I have decided to let myself be quite foolish for a while.

And then when I get better, I will have to clean up!

 

[Kaylaq]

So glad you are having some good days and feeling better, build up your strength and energy. 👍🏼😊😊😊

[KenA]

Hang in there! It gets better!

[KaiLee]

Thank you.

I suppose these are not actually the 'better days' yet, but I am hoping to finally get through this terrible period of waves.

 

Only if my sleep gets better.  

[Kaylaq]

I haven’t seen you post in a few days, so was wondering how are you doing? 😍😍

[KaiLee]

@Kaylaq, Thank you for stopping by and asking. 

I am not doing good, sadly. The anxiety was reduced, but now I got a terrible depression.

I couldn't do anything, so I just kept watching the same movies over and over again.

I was feeling too bad to write here anymore. I had no energy or meanings to express my feelings to anyone, including to myself.

So thank you so much for asking me.  

[Kaylaq]

The depression part is hard for me too! I have no motivation to move from the couch, 😣 I do force myself to go for a walk almost everyday. The weather here is so dreary, there has been no sunshine for days…. I have had some really negative thoughts also, that try to tear me down.   My usual distractions haven’t been working so well either. 
I live on 4 hrs of sleep …. 

all we can do is keep reminding ourselves it will get better…. And focus on the tools that can help us heal constantly….exercise, for me it’s walks, Movies, reading, journaling writing, eating good food as much as we can…. When I can, I try to hang out with family, even though I’m mostly quiet 🤐 

 

are you taking any supplements like Magnesium and Omega 3s like they recommend here. The Magnesium helps me to get to sleep at least. 

[KaiLee]

Same with the weather... It's very dark and dreary here, too.  

I also get no meaningful results from distractions anymore.

I do take those supplements, lately I haven't felt much difference. But I had some good results from time to time, so I just keep taking them.

I am just very afraid that everytime my 'symptoms' change, I again lose everything.

I turn into a different person, what I feel and see is completely different every time.

This time I feel so much worthless. I don't know what waits for me in this end.

I want to write about this so much, but I guess I am just too tired right now...

[Kaylaq]

🙏🏻🙏🏻😍😍  I feel you!  When it gets really bad for me, I write down affirmations, for example…Everyday I’m healing and getting stronger, everyday I’m healing and getter stronger, I do this everyday, Write it over and over, a whole page, everyday!!!    Create other affirmations, I also, repeat, … God carry me through this day!! 🙏🏻🙏🏻

[KaiLee]

Soon as I started to think that everyday I am getting better, it became my new reality.

Thank you.

[KaiLee]

I have something to say about the blackout curtains.

I've read about it a while ago, and I did install the curtain.

I was surprised by how much it makes the room darker, but still, I would never stop from getting up every morning around from 3am to 5am.

I also bought a sleep mask, but it seems I cannot keep it on while I am sleeping, so when I wake up, it is always somewhere else like under the bed, but never on my eyes.

I am wondering how to stop this from happening.

How much light could be allowed? Must it be absolutely zero? I've been trying several blackout curtains, and I don't think I've ever succeeded in getting the lights out completely.

The sleep is the great enemy... And I am not winning against it.

By the way, the epsom salt in the inflatable bathtub turned out to be a great way to ease my body. To be honest, I don't think I've felt this kind of comfort for almost 20 years!

But soon as I felt the comfort, my anxious mind decided to go back to the uncomfortable again, so it did. It's my long habit, when something unexpectedly good happens, I deny it because I can't believe it will last.

But lately I've been off from many habits, somehow thanks to my symptoms. It does give me a lot of new aspects of life. Then again it takes it. I don't know where I will land.

I'm not sure if my writing is improving or getting worse, but I sense some different in a way I want to express my feelings.

I've also bought a projector, and watching movies is all I do every day.

I never get up from my massage chair, which I also bought lately.

I feel like I'm becoming one of those people on Wall-E, who spends their whole life on chairs.

Ironically I am watching a lot of tennis videos.

Good luck to everyone who endures a great pain everyday.

Good luck to myself and everyone.

 

[KaiLee]

I don't even know what I was writing. 

I forget where I put my cellphone 30 seconds ago.

 

[KaiLee]

But most of all, I can't feel my heart anymore.

[Kaylaq]

Yes, I get that feeling…lost my soul and heart through this process. I’ve just found and started reading “success stories “ it really does help,  go and read them !!!

 

🥰🥰🥰😂🙏🙏

[KaiLee]

Thank you, @Kaylaq.

I've been through hell, my life have been in hell since around ten mostly due to my parent's decision.

They treated me in every wrong way, although they didn't mean it.

My life was stopped ever since. I was living in a never ending pain, and I believed it was where I would end.

I constantly seeked for a hint of an afterlife.

During this crisis, oddly, I was able to see my real pain, which was buried deep inside my heart.

All these 'symptoms', didn't really matter to me. In fact, I must have been glad to see and end of all the pain I was enduring.

I am seeing the clock within me finally moving its hands. By understanding my pain, I am finally feeling I am moving on.

I am very fragile, and I fear a lot that I will go back to where I was.

I get great cramps inside my head, and now I believe this happens because I have too much emotions inside me that I was never able to express out.

[KaiLee]

Therefore, although I say I've lost my heart, now I understand my heart was just a defense mechanism of mine that was there to protect me from directly touching the pain inside me, which was hot as a lava.

So I guess I am actually finding my real heart, instead of losing it.

My mind is again starting to get cloudy.

Wish me a good luck... because I really need some help to finally find myself a bright sunlight.

Words cannot express how I really feel.

[KaiLee]

The part of me that was willing to take a bunch of supplements wasn't my symptoms, but was my heart wanting it.

I had no place in my heart to rely onto, and I had no one in my life who I can tell how much pain I am feeling.

[ThatOneGirlStitch]

I just wanted to give you a hug. 🫂  It's difficult but keep hanging in there

[KaiLee]

Thank you so much... The hug emoticon is lovely.

I am feeling so distant from my feelings.

When I close my eyes, I can't even feel that I exist.

It's like I'm in a space where there's no time, no emotion, no mass, nothing.

I only feel a certain discomfort, and time just flies away while I am closing my eyes.

But this doesn't happen when I'm trying to sleep at night.

When it's night and I am trying to sleep in bed, my mind suddenly wakens up as if it wants to test me whether I can sleep or not.

Then of course I can't sleep, so I stay awake painfully.

Today I tried epsom salt bath again, but I felt absolutely nothing.

I watched the same movies again, too, which I loved, but I felt nothing at all.

It was a tough day. I also expressed great anger towards my family.

But I think it came out from my past traumas, rather than the artificial feelings that the symptoms gave me.

I hope everyone is doing okay.

Goodbye.

🫂

 

[KaiLee]

Until early afternoon yesterday, I was feeling so close to myself, for the first time in my life I felt all the choices I make was completely mine. I was present in the moment to go whichever direction I wanted to go. I felt wise and strong.

It was a feeling I never had in my life.

But then I had a crack in me, and it got bigger and bigger.

In the evening I had an outburst of nevative emotions to my family, and it resulted in me losing every feeling since then.

And I am having terrible thoughts and fears again.

Until yesterday, my mind was able to find a certain peace.

A peace I have lost so long ago.

Although I would wake up terribly and spend a long time trying to find myself, I was eventually doing really well.

Now I'm being thrown into hell again.

It scares me so much that I will never be back to such peace anymore.

It was a feeling I never knew in my life.

 

 

[KaiLee]

I woke up feeling cold, and I felt nothing in my heart again.

I fear this so much, because most of my life, I lived without knowing how I feel at all.

I was finding my real self for the first time in my life.

I fear now I've lost it again.

I've lost myself again.

I feel so empty, I feel like dust more than a person.

I can't see anything inside myself anymore.

Will I ever get that feeling again?

That beautiful feeling that I am living my only life, in my world, within my peace.

The feeling that I am making my own life.

When I hummed, I felt it coming out from my true heart.

I was never able to do that before...

[KaiLee]

I was really in love with the world I was living.

For the first time in my life I wanted to live on and see the future, without feeling so anxious and worried.

I was connected to the things I really needed to be connected, instead of being connected with every things I never wanted to be.

Now I feel all the unwanted connections coming back to me again.

It holds me so strong that I cannot think of escaping from it.

To me, it's much more than the symptoms...
It's about who I am, and I am afraid I have lost something so great again.

Maybe this is just the pattern.

But the way it happened scares me so much.

How could I change so much just within a day.

I am feeling so terrible.

 

⛈️🌪️🌥️😶‍🌫️

[Boges11]

Sending hugs your way….. hold on to the windows of peace and feeling better. And know the waves of yucky crappy and out of it/not normal feelings are the affect of the meds and not truly you.

the windows you’ve had of feeling better are the real you so hold on to those bc that’s what will shine again and be truly you as you heal from the meds completely.

sending hugs and keep coping best you can and you’ll get more frequent windows. 

[KaiLee]

Thank you so much...

[Kaylaq]

What a rollercoaster we have to ride through this… crashing waves, small windows!!! 
I’m working very hard on not thinking/looking at the big picture, … all we have is the present moment!   I keep reminding myself this is temporary, temporary, temporary, I will get better, it will get better…. 
I drown myself in listening to releasing negativity thought videos on YouTube, …. So I have something to hang onto….

 

sending you strength and courage to survive another day 🙏🏻🥰🥰

[KaiLee]

Feeling so awful again.

Nothing comforts me anymore...

[KaiLee]

It's so cruel this time because I was having more hope than I ever had in my life.

I was much wiser than I ever was.

[Kaylaq]

I’m so sorry you are in a wave again, ….this morning I made a list of things to be grateful for, like…warm clothes, my bed, food to eat, being grateful for the most basic things helped me to not dwell on my mental pain, … I know it’s so difficult to do, but try to refocus your energy somewhere else, it’s all we can do! 
Sending you strength and courage to get through this! 🙏🙏😊😊

[KaiLee]

Thank you...

 

[KaiLee]

After Tuesday evening everything is gone away.

I am really afraid because I had some real good things inside my mind that I never had before, but I lost it.

I was a miserable person from very early age. I never got to grow out of it.

Most of the memories I have in my life is filled with gray, dark, emotionless, painful, muddy, heavy raining... Kind of emotions.

I was always walking in the darkness. Wondering to reach for a light but never being able to reach it.

It took me many years for me to even begin to search for my own happiness...

But I never got to find one.

And I know I am not feeling this just because the symptoms are bringing the most terrible things that are in my mind. It's truly horrible when it happens that way, which often does, but still asides from that, I don't have any good memories at all.

The best memories are those times when my pain was relieved a little.

I am told I was a happy child until I went into the elementary school... But I don't remember any of that.

Maybe there were few little times I felt nice. Maybe I was still somehow okay until I was about 11.

But recently I was, for the first time in my life, so content with myself.

I was feeling calm, peaceful, joyous, and loving.

I was just curious to know what's inside myself.

I knew how to take care of myself.

I was still so ill in many ways, but yet, I was the best I have ever become in my life.

And now that part of me is gone again... Now I am left with all the bitterness and hurt, irritation, ugly thoughts and terrifying emotions, the restlessness, emptyness, so on... Just so terrible.

But I also know these things so, so very well. Now I can tell. These things all come from my past memories. They are exaggerated, strangely mixed together, but still I am so aware of these feelings, and they terrify me so much because I fear I will never truly be able to escape from them.

I cannot truly believe I will ever get back to that good part of me anymore.

I was, for the first time in my life, a real existing person. I was much wiser. I liked myself. Not because for any silly reasons, just because I was here.

I had no more desire left for silly things anymore.

Perhaps this is the best I can describe that feeling... I was just really happy to be myself.

I was happy to 'be'.

For the first time in my life I wasn't being away from myself.

All I want now is to be wiser... Not to live as a fool.

That's all I really want.

[KaiLee]

When I confronted my parents, although I was speaking a lot more than before, and feeling a lot more close about myself, I still felt as if I was talking to a brick wall, especially when I was talking to my mother.

I just have this terrible habit of hiding my  feelings and thoughts from myself. My honest feelings don't even last longer than 30 seconds, and this is much, much longer than it used to be before.

I always try to protect people who are hurting me.

Perhaps I must get a therapy session instead of writing here... But  my past experience with meeting a therapist was so bad. I just became more miserable and confused about myself. At first I thought he was nicer than most people who can just hurt me by saying a simple few words, but as now I can see, he was just using soft words that was good to hear. 

I've visited him many times, but I've never lost a doubt about him, and everytime when the session was over, I was just so exhausted.

Now I understand I really didn't understand about people. When someone wants to throw some kind words at me, I believed this person can be a good person.

During the session, he allowed me to text him whenever I wanted to, so that I can speak freely about my feelings. But he rarely replied back, and when I wasn't able to visit him frequently anymore, he just stopped texting me back. 

And his texts were so meaningless to me, because it always had the same stuffs in it, no matter what I was sending him at the moment. Also he couldn't even spell my name right.

I just feel so angry that I had to trust this kind of person for such a long time. I feel so hurt to know that I used to be so helpless. And when the bad waves happen, I just become that insecure, childish person who can't take care of himself. 

When I was in good moods, I felt so different. I wish I can go back to be like that again...

Meanwhile, another therapist, who is also a Jungian analyst, gives me a lot of hope and comfort. Meeting him and another doctor whom I visit frequently are the only things that keep me together these days.

Thanks for letting me share these thoughts on here. I feel so helpless, stuck, and sad now. But it comforts me to write about how I feel, although now I know how terrible I am at doing it. I really have a long way to go.