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Waterfall: Introduction

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Hi Waterfall, 


It’s nice to have you back. I’m so sorry you’ve been so distressed. Sometimes everything does feel really overwhelming n we end up in tears. I think pretty much everyone on this site has been in tears at some stage. 


Take care💚

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@Rosetta @Rabe @Carmie


Hey all, 

Thanks so much for all coming by to check on me.  

My computer is still having serious issues, 

but I've got it running for a few minutes at least. 

We'll see how long it lasts.  


Still lots of ups and downs. 

Not always sure if I'm coming or going. 

I'm terrible at recording stuff, and it stresses me out, 

so that makes it harder to have any idea how much better or worse I'm doing. 


My last period was, out of the blue, a whole week early. 

And it was kinda weird.  Less intense than usual, I think. But longer. 

Having more trouble with vision and dizziness again. 

And struggling with my legs being tingly and sore. 


Not sleeping the best lately either. And now for the last week, I've been napping during the day. 

A little while ago I had a few scary episodes after waking up or getting up after a long time sitting. 

I couldn't get up at first. Felt too weak and shaky. But the feeling passed after I sat or laid back down for a bit. 


I seem to be coming down with a cold. 

Which is worrying me a bit. 

Because the last several years, if I come down with a cold, 

it turns into a chest infection, and just won't go away. 

Unless I go on antibiotics. 

Which usually has a bad affect on my overall and mental health. 


And to top it all off, 

I missed my dose again yesterday morning. 

My husband made me new pills last night. 

But it turns out, we'd run out of pills. 

So he actually gave me a 'placebo' last night. 

And I still haven't had a dose this morning. 

And he can't get out to get a refill until this afternoon. 

So that's three doses I'm missing now.  


I've been starting to think that I should try tapering down what I'm left on. 

Since I don't quite feel like I've really started the healing process, until I'm totally off everything. 

But I don't really want to just cold turkey it again.  Even if it is a small dose.  

Especially when I'm still having it such a rough time already.  


It's been almost eleven months, since the last time I made a big change. 

Six months, since I worked hard to make my dose really accurate.  


Maybe I should do so more reading,

But I'm just not sure what to think right now. 


I know I've seen from some people that they feel better when they are out, than a home. 

I wish it wasn't so hard to go out for me. Or to do anything. 

If I could, I'd probably sit in my chair all day. 

With much of the time, spent on my computer. 


Well, with four kids, I can't sit around all day. 

And well, so much for the computer... it's pretty much dead.  

Yay for getting it a bit working for now.  However briefly. 


I know life was hard before all this nonsense started. 

But boy do I wish I could go back. 

I've had a few moments, where I felt kinda normal. Briefly.  

I can't wait to see more.  
It's so long. And slow.  


Thanks, Rabe, for saying I sound good.  

I do try to maintain a good humour.  

Especially right now, since my Mom just had surgery, and I'm trying to help her out.  

Sometimes I feel like I'm doing a bit better.  Other times not.  

So it's nice to hear that someone thinks I sound better.  

Even if wasn't, it would still cheer me to hear it.  


And yes, Carmie, I'm still rocking away. 

Even as I type this message.  

Good ol' chair.  


It's an inspiration just to know you Rosetta, 

with all the symptoms you've endured, 

and you just keep on, keeping on.  

I hope your husband and daughter are are well.  


I wish I could feel half as tough as you all seem to be.  

But who knows, maybe we all look tougher than we feel.  


And maybe someday I'll be able to get out more.  Do more. 

Be a bigger part of my community.  Volunteer somewhere.  

Be busier.  Get my house more organized (without my Mom 

having to do it all).  Play more with my kids.  Get more done. 

And not feel half dead much of the time.  


I'm sure this cold isn't helping my mood right now. 

Or the missed doses.  


Anyway, thinking of you all.  

Hugs.  💜🧡💛💙


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Hi @Waterfall. Sorry about your computer and what you are going through. I am still struggling with the dizziness but it is much better. 


I include you in my daily prayers and hope for you to see some good improvement. Stay strong and have faith friend. 


Sending hugs!

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Hugs, Waterfall.  


I think you should hold where you are for a long time.  Tapering now is a terrible idea.  Please don't.  You will be more stable after holding.  Even if it takes months your quality of life will be better during those months.  I know your dose seems tiny, but it's not.  I think it's keeping you functioning at this level.  Changing it in the midst of such symptoms couldn't have a good result.


I'm thinking of you, R

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Hey @mirage and @Rosetta

Thanks for stopping by again!


Mirage, I'm glad to hear your dizziness has been better.  

And I'm SO excited that my computer is working today!! 


Rosetta, thank you for the advice. 

I feel messed up enough for just the couple doses I missed, 

so I'm trying really hard to stay steady again for now.  


I think on the whole I -have- been doing a bit better.  

I went out twice this week,

though I did end up napping each time after I got home. 

And I'm thankful I'm not super dizzy all the time,

but I do seem to get sudden bouts of dizziness, that come, and go. 

I'll be doing somewhat okay, and then, bam, I feel awful. 

And then after a bit it passes again.  No idea why.  


As well, this morning, I suddenly had a strong pain in my jaw. 

I know I should really go and see the dentist one of these days. 

I just can't imagine how I'll get through it. 

I haven't even managed to get out for a haircut, for the past six months or more. 

Not sure how I'd go to the dentist for several appointments.  

Appointment that will involve pain, stress, and meds of some kind or another. 



On the positive side. 

I'm just glad that things aren't as bad as they were six months ago.  

And even when they aren't so great, that I think, on the whole, that I deal with them better. 


I keep working on not getting discouraged, 

when things aren't getting better, faster.  

I want to be 'normal'. 

And I want it -now-. 

I know that's not going to happen. 

But being patient isn't easy.  


It's sure crazy windy today.  

You never know when the winds are going to change.  


Warm hugs to those of us in the frigid north. 

And cool breezes to anyone down under, who's maybe feeling warm enough already.  

Best wishes, 



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Hi @Waterfall it is so good to hear you are feeling a bit better. This recovery is painfully slow! 


I understand what you say about feeling okay and then, BAM, you suddenly feel terrible. I have that with the dizziness. I can feel pretty good and then I get hit with a whim of crazy dizzy. Sometimes it comes and goes pretty quickly, other times it comes and stays a while. The month of October through mid November, I was doing really well and then the week before Thanksgiving I got his with a pretty good wave. Through Thanksgiving weekend, again, I was doing okay and then last Tuesday came a wave that is still with me and it is STRONG! I am for sure way better than I was at this time a year ago, but still not out of the woods. We will all get there. One day at a time, with patience and faith.


Sending hugs  

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Hi Waterfall, 


I’m so happy to hear that things are better today than they were six months ago. It certainly is a hard journey. We can only take what each moment brings. When we see some improvement though, it does help us to realise that we will eventually heal. Focusing on that is always a good thing. 


Sending sunshine your way☀️☀️☀️

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Im glad to hear your computer is working as well waterfall...and to hear you are doing better...yay!!!  Hugs to you!!!💜

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Hi waterfall, 


How are you doing? How is that rocking chair of yours going? Hope you’re coping okay. 


Sending hugs🤗

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Hey @Carmie


I meant to answer you so much faster.  

I've continued to write posts to you all in my head. 

But for some reason I've had a really hard setting any words down. 


But here I am today!

Finally getting something out. 


I had a period where I was beginning to feel like I was doing pretty well. 

I even went out!  On my own!  

I went to the store, and I even finally got a haircut!

My first haircut in about 7 months.  

Going and doing that made me think of @mirage

That day, I kinda felt... normal.  

I guess it was likely a pretty sweet window. 


Since then, sadly, I've been struggling a lot more. 

Getting through the holiday period was really tough. 

I went out the other day, and took a two and a half hour nap afterwards. 

I've been having crazy vivid dreams. 

Cortisol spikes. 

Feeling cold, and shivery. 

Struggling with my vision.  

Feeling very foggy headed, and half asleep sometimes. 

I've had the runs for about a week or so now.  


So then I guess I'm in a worse wave again.  

Hopefully I see some more window again soon.  

I hope you're all doing well.  


Any time you send me a message, I get it right away. 

I'm sorry that I'm so slow to answer these days. 

I hope I get better at it again.  


Love you all, 



(I'd likely type a little more, but my poor, sad computer is about to run out of power...)

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Hi waterfall, 


Nice to hear from you again. Yes, this journey is certainly full of windows and waves, but the fact that you were well enough to get out and even have a haircut shows that your brain is trying its hardest to heal, it will heal one day.


I hope this latest wave lifts again soon💚

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Well Hi Waterfall!!  How nice to hear your 'voice!'  Have missed your posts!  SO happy to hear you had a nice long window!  I know how hard it is when the shade goes down again....it will go back up....up and down and up and down.  We should all build an amusement park we know the rides so well!!  Have thought about you so so often.  Hope your wee ones are doing well.  How is your chair?? Take care!!!💜

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Great to see you here, Waterfall.  I hope you can get the computer issue fixed.  Hang in there.  It's great that you have been seeing some better days!!  That's a wonderful sign! - Rosetta

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