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Waterfall: introduction

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Carmie

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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Waterfall

@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.  💜🧡💛💙

Waterfall.  

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mirage

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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Rosetta

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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Waterfall

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. 

 

Anyway. 

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, 

Waterfall.  

 

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mirage

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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Carmie

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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Rabe

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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Carmie

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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Waterfall

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, 

Waterfall.  

 

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

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Carmie

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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Rabe

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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Rosetta

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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Waterfall

Hey everybody, 

I know I haven't been around much, but it doesn't mean I haven't thought of you all. 

I think I've written more posts to you in my head than I could count. 

 

Not that I'd trust myself to count very accurately... my brain has NOT been working the best lately. 

I say my order out of words... er, words out of order.  I call my kids the wrong names. 

A couple days it was getting really unnerving, because I was playing a dinky little game on my phone, 

and I kept doing the wrong things. Tapping when I was supposed to be waiting. Waiting, when I supposed

to tap on it. Staring into space, because I'd forgotten I was on a timer to look for something, which would

upset me, because I'd lose, because I'd forgotten that I was competing at anything. Dumb stuff. 

 

I thought I was doing a bit better. I'd gotten out to the store a few times. 

Was doing a bit better maintaining things around the house. 

But I really should record things better, because I really can't be sure how far up or down I've really gone. 

And how much is just twisted perspectives.  

 

Anyway, I thought I was doing better a while back, but I did struggle going up to Christmas. 

And Christmas time I did both better and worse than I expected. 

Sometimes I'd feel just terrible, and be surprised how bad it was, 

and then surprise myself by making it out to a function that I didn't think I could manage. 

 

Sometime during Christmas, when my sister was out this way to visit with her family, 

I had a piece of cake. 

I think that must have been what started it, but either way, around then, my hands flared up. 

Terrible itchy bumps that would ooze.  I can remember waking up in the night scratching. 

It was just awful. 

Then it was my lips as well. I felt just parched. 

I've been drinking lots to try to help, and putting lots of cream and lip balm on. 

 

And then the cold hit. A nasty, dragging, coughing, cold. 

It feels like it's been hanging on forever. 

And somewhere along the way, I think after the cold started, 

I accidentally ran out of meds. 

My husband and I thought we had a refill.  

But we didn't. 

I got an appointment right away at my doctor's office, with another doctor. 

In the end I missed three doses. 

 

Now, I'd done it once before, when I missed three doses, and I think it shook me a little, 

but overall, it was a bump in the road, a rock of the boat, and the effects seemed to have rippled away. 

Well, not this time. 

I missed a morning dose, and the evening. That evening I was already feeling a bit rough, 

but I thought I'd be alright. 

 

Well, the next day I was an absolute wreck.  Just feeling awful, and sick, and jittery. 

Barely made it through the visit to get the prescription. 

Though interestingly, I was quite calm in front of the different doctor. 

In spite of the fact that she (kindly, and gently) grilled me about why I was taking it. 

Was I aware there were other and better solutions. Had I tried...?  

Yes, yes I have.  Thank you.  I don't need another antidepressant. 

And no, I don't want to be on this one either, and I'll get off it when I can. 

Oh, and did I realize that being on this particular med long term damages memory. 

No, no, I didn't. Not specifically. I knew it was bad. But I didn't tell her that. 

I calmly said yes.  And then went home and have been worrying about it every since. 

Because that's what I do. 

I worry.  

 

Anyway, it's hard to say just how much up or down I've been since then, 

and how much I can blame on that event or not. 

I only know that in the last little while, somewhere between the rotten hands, 

and the nasty cold that just refuses to leave, 

that I've had some really rough days and nights. 

I've been up in the night, nauseated and shaking. 

I've had some rough episodes of heart palpitations or weakness. 

I've had a half day, or an afternoon, or an evening here or there, where 

I feel jittery and sick and just not myself.  

Sometimes I can't sleep. Other times I feel the intense need to sleep in the middle of the day. 

Some days I manage to push through and keep my house from falling apart. 

Other days I let it go, and try again the next day. 

 

But overall, it really feels pretty rough lately. I guess I've decided that somewhere along the way, 

I entered another wave.  A deep one. And long.  

Two days ago I had a terrible headache. Yesterday I dozed in my chair. 

Today I just feel rough, and dry, and tired, and headachy. 

My computer says that headachy isn't a word, but if it isn't, it totally should be.  

I'm struggling with symptoms and things that I thought were long gone.  

I even had trouble sitting at the supper table a number of times lately, 

which hasn't been a problem in quite a while.  

I've seen the return of cortisol spikes, tears that stream out of my eyes when I wake up in the morning. 

Tingly hands and feet.  Phantom pressure on top of my head. 

Sore fingertips. 

 

So I'm thankful that I haven't struggled with some of these things for a while. 

But I'm not so happy to see them back again.  

I felt I was doing better.  So it's hard to go back.  

And I can't wait to see some progress again.  

 

I was thinking about progress, ups and downs, and where I've been.  

Roughly nine years ago, I tried my first antidepressant, wellbutrin.

8 1/2 years ago, I first felt 'off'.  Started to react to soaps and creams.  

5 years ago I started struggling really bad while pregnant with my last son. 

4 1/2 years ago, I crashed hard.  Tried several antidepressants. 

Included a stint on clonazepam, and settled on citalopram.  

It's been about 21/22 months, since I CT'd off of citalopram. 

It's been about 18 since I came off the St.John's wort that I tried, 

and the attempt to go back on citalopram, which also happens to

be the time that I started taking clonazepam again. 

It's been about 13 months since I tried to stop taking clonazepam 

and ended up by halving it. 

It's been about 9 months since I began a pretty rough downturn. 

Which is what got me to start being more accurate about my dosing, 

 

It's been quite a journey. 

I'm glad that I no longer find it a days worth of accomplishment just

to go to the bathroom.  Or to sit in another chair.  Or to sit with my family

for a meal.  Or to make it up the stairs.  

The road is still rough. Much rougher than I'd like it to be. 

And sometimes, it's hard to keep positive. 

I continue to amaze myself with how strong I can actually be. 

And I will probably continue to surprise myself with how good it can 

feel, to feel good,. And how absolutely awful I can feel sometimes, 

and still be alive.  

 

But I think I'm beginning to repeat myself. And blather on needlessly. 

I plan to go and look up some of your threads, and see how you all are doing. 

Hopefully I'll be back again a little sooner after this.  

And hopefully the days will brighten with the spring. 

And this frustrating, *hack, cough* , cold...will leave for good!

 

Hugs, 

Waterfall. 

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Waterfall

Found a message I meant to post a while back, 

and still thought maybe was worth sharing anyway.

 

 

Hey guys.

My computer died 

Makes posting difficult.

Thought I made a post recently.

Seems to be gone.

So glad to hear from you. @Carmie @Rosetta

 

Thought I was doing a bit better.

And then not so much.

Up. Down. Confusing. Discouraging.

Probably waves, and windows.

Just so hard to see.

Makes no sense.

Always trying to figure it out.

Need to let go, and just ride it out.

 

Had a really lousy day so far today.

Crazy emotional.

Crying. Irritable.

Barking at people.

Discouraged.

 

Finally settled down and got something some.

But now I'm tired, and sore.

Been more dizzy again lately. 

 

Blah.

 

How are you guys doing?

 

 

 

According to the editor, I wrote this a while ago, and clearly meant to post it. 

I thought I had posted it. 

Glad to say that for the most part,

I'm not as dizzy as I was then,

or as emotional.

 

Still having those ups and downs.

It's hard to recognize them as such, sometimes,

but I'm slowly trying to accept,

that this is actually what waves and windows feel like. 

So that part of the message is as true as ever.

Still trying to figure out what causes what.

Probably still need to let go,

and just let things happen.

Can't seem to control it anyway.

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Waterfall

Well.

Feeling pretty lousy tonight.

Went to bed late to start with.

Couldn't fall asleep.

 

Dozed off, and kept waking up coughing.

Finally woke up coughing, heart pounding.

Couldn't seem to get back to sleep.

Just noticed that I forgot my pill at bedtime. 

Got up to take it.

Feeling sick. Shaky. Jittery.

Not sure if is because I forgot my pill.

Or something else. 

 

I hope I can fall back asleep eventually.

Hope my cough improves.

Hope my other symptoms improve soon too.

It's been a rough stretch.

Getting a bit discouraged. 

Thought I was doing okay for a bit.

Then worst it's been in a long time. 

Frustrating.

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Carmie

Hi Waterfall, 

 

Nice to have you back. I’m sorry you’re up and down, I think that pretty much describes the healing process. I’m so sorry you’ve been so sad. 

 

How long ago did you miss your three doses? It certainly sounds like that, plus having a cold has made you feel the way you do now. I’m really sorry you didn’t realise that you didn’t have a refill. Please make sure that you write in a diary or on your calendar when your refill runs out and get it a week or so before you need it. 

 

We can’t change the past though, you will eventually stabilise a bit again though, we just don’t know when.

 

I hope that rocking chair of yours continues to give you comfort. I actually bought myself a weighted blanket, and I find it very comforting.

 

Take care, sending hugs🤗

 

 

Edited by Carmie
Removed white space

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Carmie

P.s. I just wrote to you while you wrote your last post. Snap!😄 

 

How long after you realised you forgot to take your meds did you take them?

 

Have you been in a bit of a panic lately? It’s so important to keep to regular dosing. I’ve doubled dosed accidentally twice and payed for it. We need to be more careful, I know it’s not always easy when our brains are all over the place. Maybe you could set a timer so you don’t forget to take your meds. Are you using a Monday to Sunday pill box? 

 

I hope you get some sleep💚

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Rosetta

(((Waterfall))) I'm so happy to see you here again! -R

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Waterfall

Nice to BE back, @Carmie

And it feels so good to hear from you. 

Were you always a moderator, or is that new? 

I can't recall if I noticed that before.

 

Anyway, I know I certainly haven't be answering any post very quickly, 

including this time, 

but I always read anything I get, right away. 

Whatever posts I get always mean a lot to me. 

 

Since this last post, I first had an incident where I woke up coughing, heart pounding, retching, and shaking. 

Not fun. 

I haven't barely been able sleep since, I've been coughing so badly each night. 

If I doze off, I often wake up coughing again, my heart pounding. 

 

So yeah, you asked if I've been in a bit of panic.. 

I'm not sure I'd say 'in a panic', but certainly more jittery lately. 

And struggling a lot more. 

A lot more symptoms in general.  

 

Today I finally gave in and went to the doctor, 

and it turns out that yes, I have another chest infection. 

This will be my third in the last half dozen years. 

I can't help but wonder if this too, is withdrawal related somehow. 

 

So. He (the clinic doctor) wants me to take an antibiotic, 

and an inhaler.  

I'll admit it,

I'm terrified. 

 

I know I'm not entirely stable at the moment, 

even though I was doing better for a bit. 

And I'm just terrified that taking these medicines is going to make things worse. 

But I'm just as terrified NOT to take them, since I feel so sick.  

 

Oh, if only I could find a doctor that actually -gets- it.  

Someone who truly understands all the pieces of this picture. 

And would know what I should do. 

 

I already tried so hard to get over this 'cold' by myself. 

I drank honey lemon tea. 

I tried to stay hydrated. 

I tried to get enough sleep. 

I even tried the wet sock thing (if you've ever heard of that)

I had chicken soup, with bone broth, and garlic. 

I took throat lozenges with menthol, and eucalyptus. 

Then promptly wondered if -that- was going to make my system complain. 

Or perhaps is already what's making my system complain.  

 

If anybody knows anything about inhalers, antibiotics, and withdrawal, I'd love to hear it.  

I tried looking stuff up myself, but my brain isn't working at it's best right now.  

 

I hope that you are all doing well. 

@Rosetta I hope your leg is healing well. 

@Rabe I just hope you feel better soon. 

Oh, and Carmie, I hope that you get over whatever virus you are fighting too.  

 

Okay, I feel like today needs a positive thought. 

Let's see... positive.... positive.  There must be something positive I can think of. 

Hmmm.

 

I do have friends to talk to. 

That make struggling less lonely. 

I have a loving husband. 

Four beautiful children. 

I have a house.  

And many possessions to fill it with. 

Running water. 

And heat. 

I have... a chair!  

I like my chair.  

And I have silly little games to play. 

To pass the time, when things are tough. 

 

That has to be all for now. 

Time to pick the kids up from school.  

I feel a tiny bit better now. 

For trying to be positive. 

 

Now if only I could stop coughing... 

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Rosetta

(((Waterfall))). I'm having a hard day, but there's a virtual hug for you.  Thanks for reminding me that there are many things to for which to be grateful.  Love, Rosetta

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Waterfall

@Rosetta I'm sorry to hear that you are having a hard day today. 

I hope tomorrow will be better! 

Thanks for the virtual hug. 

I needed it today.  

So hey, here's a virtual hug for you too!  (((Rosetta)))

 

Oh, before I forget, you asked @Carmie when I missed the doses. 

It would seem, looking at the calendar, 

that it's been roughly 3 weeks now.  I think.  

 

But back to the present. 

Today was sure rough.  

First of all, I feel pretty lousy.  

Chest pain. Bad cough. Sore throat. 

Headache. Brain fog. 

 

On top of that, I have to take these medicines, 

and I'm afraid what they will do. 

But, for better or for worse, I've taken the first dose of each. 

I took the antibiotic with supper. 

I thought maybe I notice a slight improvement in the cough

in the time after that. 

But my stomach is a little bit upset now too. 

I just took the inhaler now.  Not something I've ever liked doing. 

And I've never liked the idea of steroids either.  

But neither do I like being so sick. 

So I just hope I don't get any bad side effects from them. 

 

I ate some yogurt now, to settle my stomach, 

and maybe add back a little probiotics to the system. 

I'm planning to take some probiotics to counteract 

the effect of the antiobiotics on ME, as opposed to my infection. 

I hope I will be able to handle that too. 

Oh, but it's hard not to be scared.  

Nevermind that my cough still scares me for now. 

I'm so tired of coughing so hard.  

 

And on top of all -that- there is the strange pain in my lower left side of my chest. 

I've had it before, but it's pretty bad again.  

And I've started to wonder again what it is. 

I wonder if I could be my spleen.  

Not that I have any idea what that would mean,

and what, if anything, I could, or should do about it. 

I've always presumed it was 'just another withdrawal symptom'. 

 

I really hope I get to be one of the ones who gets to feel relatively normal again someday. 

Oh, to feel the way I used to. 

But pining for the past isn't helpful. 

I can never return there, only move forward.  

So, at the very least, my prayer is that I will receive enough energy and strength

that I am able to do my daily tasks, and enjoy life.  

That I'll be able to raise my children, 

teach them, 

play with them, 

go camping again someday, 

before they are already all grown up.  

Go on adventures together, 

before it's too late.  

 

Oy. But that starts with not dying from this stupid cough. 

Or the medications that I have to take to survive the cough. 

So I'm going to try and get some rest. 

Rest is good for me in either case. 

Hopefully tonight I can sleep. 

 

So, on that note, 

Good Night. 

I hope that everyone gets a good sleep tonight. 

And even if not, 

I hope you enjoy your comfy bed. 

Your soft pillow. 

Perhaps a good book.

Or some peaceful music. 

Perhaps some other pleasant background noise.  

And may tomorrow be a better day.  

Best wishes, 

Waterfall. 

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Waterfall

Oh dear. 

Now I don't know what to do.

I am definitely referring to something.

Or.   Hmmm.  

I've woken up. It's 5:30 am in the morning.

I think I actually first realized I forgot my

clonazepam last night. So I quickly took it. 

It's 5-6 hours too late. 

I hope that is better than missing it entirely.

Anyway.

I feel totally buzzed 

Wired. Jittery. 

My face feels hot 

Walking to the bathroom. 

About ten steps away 

I could barely walk straight.

I came here to post.

And I almost couldn't think what to do

To get my email open.

And how to get here at all. 

My phone is making each fragment I'm saying

Into a different sentence.

And for once, I don't care.

It's too hard to think to worry about changes.

My body is totally freaking out.

I feel warm in a strange way.

Sort of tingly all over.

And like I'm shaking all over,

But if I hold up my hand, I'm not shaking at all.

 

In my memory, this is very much like

how I felt when I tried to reinstate.

Only I felt a little like this after one day,

And then each day I tried to take it, felt worse.

If I stopped taking it, these feelings would subside over a few days.

And return if I took it again.

It only got this bad, the one time I really tried to push it.

And that was when the naturopath that I was seeing at the time,

said that I had serotonin syndrome.

 

I wish, that like I planned,

that I had only taken just the antibiotic,

And bit the inhaler until this morning,

So I could have possibly figured out it

was one or the other.

 

Knitting, I seem to be a bit calmer now,

and I can think a little bit better.

A bit less shaky,

But I still feel like I'm glowing with warmth.

Right now my feet feel like they are burning.

Funny thing? 

I noticed the slight improvement,

Because I started caring a little more

about my sentences.

 

But what am I going to do.

I'm sick.

This chest infection is awful.

I slept a little better last night

Because my cough was a fraction better,

But I'm still pretty sick.

What am I going to do?

Try tough out the meds?

Try find a doctor who understands

(Like that is going to happen)

And try get a different antibiotic,

And see if that helps?

What is the antibiotic even doing to me?

It feels absolutely awful.

But is it dangerous?

How in the world am I going to get better?

And how in the world am I going to get through this?

 

I feel luge I should tag someone important.

Because I feel like this is urgent.

And, well, important.

But last time I tagged Altostrata,

Who I respect immensely,

She (and please tell me I'm even right

that she's a she, and not a he, because I feel

good enough to care right now, but not good

enough to go and check.)

Anyway, she didn't seem too impressed.

I don't remember what she said I -should- do.

 

I just don't know what to do.

I hope someone who can help answers me today.

Please, oh please.

I've toughed a lot of things out,

But I just don't know what to do with this dilemma.

Help.

What do I do?

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Rosetta

What is the name of the antibiotic?  Even if it is one of the no-no antibiotics you will get over this, of course.  

 

These are are the no-no antibiotics: fluoroquinolones

Ciprofloxicin (Cipro)

Gemifloxacin

Levofloxacin (Levaquin)

Moxifloxacin

Norfloxacin

Olfloxacin

 

 

 

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Waterfall

Okay, I feel a little foolish now.

I felt really, really awful this morning.

And I still feel pretty rough.

But I think I've decided that I'll live. 🤪 

 

I decided this morning,

after whatever weird episode that was,

that the infection was probably worse for me

in the long the term, than whatever reaction

I am having, or will have, to the antibiotics.

I am especially grateful to know that the

one that I am taking is not one of the ones

that you listed @Rosetta

 

So either missing my pill at bedtime

or the antibiotic and inhaler,

probably caused something like a bad

cortisol spike this morning. 

I've also had some upset stomach

and other bowel to issues.

(TMI, but I spent a lot of time in the

bathroom this morning)

But other than that, 

and some weakness/dizziness

I'm currently doing okay...

for someone with a chest infection.

I'm still definitely sick,

though my cough has improved slightly.

My chest is still sore and heavy.

I'm still achy, tired, and have a headache.

And a bad cough, of course.

But I now believe I can make it through this.

Even if I have some more nasty cortisol spikes.

 

Side note,

I feel like such a wuss sometimes 

There are some people who deal with

so much worse than I do.

I just don't usually think of that when I'm

struggling a lot, and feeling so lousy. 

I'm constantly amazed how awful we can feel,

and still turn out to be okay.

 

Thanks, as always, for your encouragement Rosetta.

I hope that you are having a better day today.

And thanks so much for stopping by.

Sincerely,

Waterfall.

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Rosetta

There are many other "floxacin" antibiotics, and they have brand names without "floxacin" in the brand name.  

 

I'm glad you are feeling better though.

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Carmie

Hi Waterfall, 

 

Glad to hear you’re feeling a little better, sending hugs your way while you’re rocking in your rocking chair 🤗

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Waterfall

Sadly, not feeling better anymore.

Was feeling hopefully,

because I decided I could handle the meds.

Was initially afraid I would react badly.

Antibiotic seens to have given me an

upset stomach sometimes and some runs.

Otherwise I seem to be okay on that front 

 

I'm mildly assigned that I seem to have

become so sensitive to the benzo.

I don't like missing a dose,

but doing so, or just being late,

has never sent me for such a tailspin before.

 

But most concerning is that in spite

of the antibiotics, and the inhaler,

I don't seem to be getting any better.

I feel just awful this morning.

Tempted to go back to the doctor today.

 

Shaky. Weak.

Chest hurts. 

Shoulders hurt.

I feel absolutely pathetic.

 

Thankfully the flare in tooth pain

that I had for a few days had subsided.

Not a bad headache, at the moment at least.

Throat and ears don't hurt as much right now.

 

But I sure would like to get better.

Oh, thinking ain't working so hot either.

I was going to say something else,

and I already forgot what it was. 

Have had more issues too.

 

Oh, to feel better.

I've found myself kind of weepy

the last day or two.

 

Sometimes I worry, 

is this going to kill me?

It would almost be nice

not to have to struggle anymore.

But I don't want to die.

Just not feel so sick. 

 

Wishing you all a wonderful Sunday.

Sincerely,

Waterfall.

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direstraits
18 minutes ago, Waterfall said:

Sometimes I worry

is this going to kill me?

It would almost be nice

not to have to struggle anymore.

But I don't want to die.

Just not feel so sick. 

this is exactly how I feel,it's an awful way to live....hope it gets better soon .xx

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Carmie

Hi Watefall, 

 

I’m so sorry you are feeling so terrible, this really is a hard journey.

 

Please make sure you don’t miss a dose again.  Maybe you can set the timer on your phone to go off when you need to take your dose. Missing the dose, and then taking it much later as you did could have caused your symptoms to ramp up. It’s easy to miss a dose because out brains are all over the place in withdrawals. 

 

The chest infection you have can certainly be ramping up your symptoms as well. I hope you get over it soon. Any kind of stress, whether physical, emotional or mental can make our symptoms worse. Even happy stress, like having something exciting to look forward to, can ramp up symptoms. Our CNS is so sensitive when going through withdrawals. We have to do our best to find things that distract us from the symptoms and help us to stay calm. 

 

I hope you feel a bit better soon💚

 

 

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Rabe

Gosh Waterfall....I hope you feel better VERY soon!!!!  Love and hugs!!💜

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Rosetta

(((Waterfall))). This is the hardest thing I have ever done.  Hands down.  Pre-meds was nothing like this.

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Waterfall

So.  

I feel like a yo-yo these days. 

Hopeful. Despairing. Hopeful! Nope. Despair. 

Stop coughing. Start coughing again. 

Pain. Less pain. More pain!

Pain moves. It's in in my chest. 

No, it's my teeth. 

Nope, my shoulder. 

Actually, no, it -was- my chest. 

Okay, maybe it's my lower abdomen. 

Or, maybe it was mid back. 

Nah, it was my neck. 

No, my jaw. 

Now it's the backs of my shoulders. 

I'm dizzy, weak. No wait, I'm stable again. 

Okay, not anymore. 

Up. Down. Up. Down. 

Yo. Yo. 

 

All through it, I'm kinda drained. 

Feeling kinda weak in general. 

Heart pounds easily. 

Prone to panic. 

I'm sore. 

I've noticed I'm rather tense. 

I think that's making me more sore too. 

Oh, and then heartburn out of the blue. 

Totally didn't expect that one.  

 

Not sure at all anymore what's 'sick'. 

What's withdrawal. 

What to think of anything. 

 

I took my full course of antibiotics.  Clarizythromycin. 

Saw a doctor on Wednesday. 

He said he doesn't hear anything in my chest anymore. 

Told me to keep taking the inhaler. 

Wants me to go for a lung function test. 

Not sure what that all means, but it's related to asthma, I think. 

Which is interesting, because I was told I don't have asthma. 

Hmm.  

 

Anyway.  

One tough day after another. 

I can't wait to feel better. 

Whether this is a virus, or something. 

Or just 'plain' withdrawal. 

It's so discouraging to feel this rough. 

 

I had a bad episode last night. 

Suddenly felt weird and dozy. 

So I dozed off in my chair. 

Makes sense, right? 

Well, I woke up feeling just terrible.

About a half hour later. 

 

I can't even find a way to describe how I felt. 

It was kinda jittery and panicky. 

But also shaky, and weak, and just... 

Weird. 

It's quite a bit like I was last week, 

when I woke up after my first dose of antibiotics and my inhaler, 

at 5:00 or so in the morning.  

I was really freaking out this time too. 

But last night, my son showed up. 

So... I tried my best to act normal. 

Settled back in my chair. 

And waited it out. 

 

When I finally crawled into bed an hour later, 

I was still feeling off, but not quite so awful anymore. 

Still, the whole experience... again... 

just makes it that much harder to stay hopeful. 

 

You feel a bit better, you feel awful, 

and then you gain some hope, 

and then it's dashed.  

Up. DOWN.  Get up again. Crash!  

What a nasty, awful, roller coaster. 

 

Whenever I think I've endured the worst I can.

It seems like I get to experience something a little new.  

And then when I think that's terrible enough, 

I read or someone else experiencing something even worse. 

Or, I find a new experience of my own to terrify and torture me. 

 

I want to stop being scared. 

I want to stop feeling awful. 

I want to run again. 

And jump. 

And sleeeeep.  

Oh, to sleep.  

I was sleeping so well just a month or two ago. 

Okay, not as well, as I would like but a lot better than I am now!

 

But to go to the park, without worrying how long I can stay standing. 

I keep dragging myself out, to the bus stop, to the store, 

because I have to. 

I want to do these things, without wondering if I'll survive the ordeal. 

Just a short while ago, I was celebrating the fact that I'd made it back to a store. 

And the trip out by myself didn't even feel like a big deal!

It was so wonderful. 

And now I've lost it again. 

 

I dragged myself into the store with my husband and two little boys today. 

It was awful. It was torture. 

But I was trying to be the Mom that I want to be.  

That I used to be. 

That I dream to be again.  

 

I cry when I don't want to. 

I can't cry when I want to. 

This to, is a strange kind of torture. 

 

Oh, what a strange life.  

Who knew?  

 

Sigh. 

I need to try relax and sleep. 

I feel so tense right now. 

I ache with being tense. 

Tired of coughing. 

Tired of hurting. 

 

Starting to wonder if I should be tired of talking. 

I think this is a really long post.  

 

Oh, almost forgot. 

Was going to say that with this cough persisting, 

I've been trying to do things to help. 

Trying to drink lots. 

I think something is wrong with my fluid balance right now. 

But I have no idea how to figure out what it is. 

Just everything feels dry. 

Even though I don't really feel thirsty.  

I wonder if this 'dryness' is causing the cough problem. 

 

Anyway, also taking Vitamin C.  

And wearing wet socks to bed. 

Both of which are supposed to help. 

I mean to do more.  

Things I've been told. 

But I don't even have the energy to do what I'm already doing. 

Everything is a weight.  

So hard.  

 

Why does everything have to be so hard?  

 

Will I ever get off these stupid drugs?  

It feels like my healing is really going to 'begin' 

until I'm off all the drugs that started all this. 

But I know that's not true.  

People taper for years. 

Their healing journey has definitely begun. 

I know where my misery started. 

I wonder where the worst part is/was/will be, 

and when my healing did/has/will start.  

 

Still not in bed yet.  

Hmm. 

Need to fix that.  

Wow, what a long post. 

Sorry.  

Thanks for sticking around to read it!  😋

 

Oh, hmm... interesting. 

Heartburn is going away. 

Now my stomach isn't happy. 

Which reminded me that it hasn't always been happy lately either. 

I've had a lot of burping. 

And strange toilet habits. 

Low appetite. 

But I struggle before/at meal times, if I don't eat. 

I get all shaky.  

 

But really, 

I'm going now. 

Good night.  

 

I hope you all have a better day!

Hugs, 

Waterfall.  

 

(I hope -I- get a better day tomorrow too...

    Kids have a day off from school, which is nice!)

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Rabe

Hi Waterfall...hope you feel even better REALLY soon!!!  SO sorry you have been so set back.  It is hard to have made progress and then feel snapped back to the past.  Thinking about you lots!💜

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Carmie

Hi Waterfall, 

 

I’m sorry you’ve been struggling so much. Just wanted to send you some hugs🤗

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Waterfall

Well, I -was- doing a bit better.

Not great, but a bit better.

Yesterday I took my daughter to the doctor.

I wasn't sure I could make it out.

I did make it. Daughter is okay. Bad virus.

 

I had a few symptoms while out.

Slight panic while in waiting room.

Fingers on one hand hurt, and felt sort of

numb while waiting.

Hands hurt on the steering wheel

to drive home.

 

After I came back, I had the worst day

that I have had in a while.

After I got back, it was almost too big

of a chore to go to the bathroom.

 

Delayed lunch because it felt too hard to get.

Got really hungry, then, suddenly, not hungry.

Finally got up to eat, because my husband

made something, and I was SO shaky.

 

Sudden sharp pain in the palm of my one hands during the afternoon. 

It would fade and then flare up,

Whenever I tried to use it, 

Or move it to certain positions.

I'm going to guess pinched nerve?

I had something similar for a while years ago

and it did go away after a while.

 

Anyway, got to be not too late last night.

Kids are off school, so I could sleep in!

Only.. I woke up at 6:00,

with a bad cortisol spike.

Hands burning. Feet burning.

My eyes crying emotionless tears.

 

Usually I try relax and go back to sleep.

Wasn't working today.

I feel hungry, but I don't want to eat.

Like I should get up, and go to the bathroom,

but I don't want to move.

And yet, I'm having trouble staying still.

 

I feel thirsty a lot lately,

but I have trouble drinking very much.

Especially yesterday, I just couldn't seem

to get the water down in any great amounts.

I wonder about my electrolytes,

but I have no idea what I would do about them.

 

I've been hot, and cold. And hot again.

I've been struggling with chest pain.

And shoulder pain.

And pain and tingling in both my hands

and my feet.

Dry eyes, dry mouth, dry nose.

Cough is better, not gone.

Phlegm bothers me a lot.

Sometimes it feels hard to swallow.

Apatite is low most of the time.

Sometimes I am crazy hungry.

But don't seem to want to eat lots at once.

Just frequently.

Hand rash was better/gone,

but just returned, just a little bit.

Cortisol spikes have been getting worse.

Bathroom has been weird since antibiotics.

I think, at least. It's just.. weird.

Nothing for a bit.

Then suddenly urgent.

You probably don't want more details.

Had mild dizziness and nausea.

Not too bad.

 

I'm kinda bummed.

Had high hopes for my kids school break.

But I'm feeling lousy.

Not up to much.

Wanted to get out, go to parks.

Don't even want to get out of my chair.

(Not that I'm there yet.. still in bed)

 

I'm afraid that I just keep getting

more and more sensitive to this drug.

I'm afraid that I will never get off of it.

I just don't know how it's ever

going to happen.

I feel like I'm permanently broken.

 

I just want some energy back.

Some strength.

Some stability.

 

I wonder if I'll ever feel healthy again.

 

Thinking of you all.

Thank you to the ones who've stopped by 

 

Best wishes,

Waterfall 

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