Waterfall: introduction

[Rabe]

Oh Waterfall...can you reach out to the mods for some thoughts and help?  Perhaps that would help you some?  Take care!!💜

[Waterfall]

Thanks for replying, @Rabe

I know you are struggling a lot right now too.

 

If I knew what to ask, and who to ask,

I must certainly would ask it.

 

I guess that I figured that the lovely

@Carmie stops by, who I think is a mod,

and several others, like @Rosetta

so that if there was something I really

needed to know, or something useful for me,

then someone would tell me. 

 

So far, I've been told to hold.

So I keep holding.

 

 

I got up feeling awful this morning.

Things improved.

Had a not horrible, not wonderful,

sort of okay-ish day.

Didn't feel too great 

Didn't feel too awful. 

 

Went to the store late this afternoon.

Had a small window!

I thought, for a few minutes,

"I feel almost normal!

Didn't last long,

but I thought it.

 

Then I came home.

Felt a bit lousy, so I sat down

in my trusty chair for a bit.

 

Then my daughter threw up.

Then I started to feel sick.

Still not sure if it was a

psychosomatic reaction to her throwing up.

 

But I burped, and burped.

I almost threw up myself.

And burped, and burped. 

A lot.

 

I started to feel just a tad better.

Then I got up and went to the bathroom.

Then I felt really awful again,

My nausea increased again. 

The burping started up again.

And a pain/pressure appeared

in my lower back.

 

I quickly sat down again.

And burped. And burped.

The pain in my lower back moved.

First to mid-back. Around kidney area.

Then to my lower left chest. Quite sharply.

Then the center of my back.

Then my shoulders, mostly the left one.

Then I've forgotten exactly,

but in the end it settled in the spot

Just at the bottom of my left rib cage.

It waxed and waned in intensity.

Sometimes it went a bit lower, or higher.

Once I felt it on the other side for a bit.

But there or mostly stayed.

Pretty strong and sharp sometimes.

 

At 8:40 someone pointed out the time.

I thought, what!? When did it get that late!?

Perhaps I feel sick because I'm hungry.

And I proceeded to eat the applesauce

my husband had brought me earlier.

 

It didn't feel especially good, or bad, to eat it.

I didn't feel any desire to eat more, so I didn't.

But after a while longer,

when I was considering going to bed,

I was somewhat afraid to eat,

and somewhat afraid not to, 

lest I wake up early again, 

or even in the middle of the night,

because I am hungry.

 

So I sat down just now and ate some ham.

Not exactly the usual 'easy' food.

Seems to have gone down okay.

 

So. 

The way I'm feeling.

Is it withdrawal?

Is it just plain anxiety? Panic? 

Is it just the flu, like my daughter has?

Or is it a combination of them all?

 

Am I doing something wrong?

Is there something I should be doing,

that I'm not doing? 

 

I feel like I have some better bits sometimes.

Punctuated by truly awful experiences.

And spaced with lots of just generally

lousy stuff most of the time. 

 

But that's just what withdrawal is like, isn't it?

I just accepted that so well for so long.

Believed it, thoroughly, and trucked on.

Why am I suddenly so doubtful and scared?

I'm so afraid that it's something else.

Something serious.

Or that it's going to keep getting worse.

 

Which is really just part of withdrawal too,

isn't it? 

Being uncertain.

And scared.

And just kind of general, this sucks.

That's withdrawal.

 

Which.. sucks.

 

And there is nothing much to do 

But wait.

 

Time. 

 

 

Lots.

Of time.

 

 

I keep trying to remind myself of the gains.

I didn't used to be able to listen to music.

Or watch TV.

I had lots of panic in one phase.

Lots of cortisol spikes in another.

Could barely get across the room for days

at a time.

Today was the first meal

I have missed with the family

in a long time! 

That's something.

 

But now I have other new

and sometimes terrifying episodes.

Always something new.

And something familiar.

Always changing.

And staying much the same.

And yet changing.

Until I never know what to expect.

I really dislike that.

The uncertainty.

 

I would say expect the unexpected.

But I never do.

It's always different than what I expect.

Expect a lousy day? 

It will be worse.

Or maybe better.

But not what I thought.

Expect a good day? 

It won't be.

Or maybe it will surprise me,

and be even better than I'd hoped.

Only to come crashing back down again.

And then turn out okay in the end.

Or get worse again.

 

Such a nasty roller coaster.

I don't even want to think of some

of the nasties that I have encountered.

I might not have the courage to forge on.

 

What will tomorrow hold?

 

 

Thinking of you all.

I hope you had a better day.

Best wishes,

Waterfall. 

[Carmie]

Hi Waterfall, 

 

I’m so sorry you’re struggling so much. Your system is very sensitised because of the medication changes you’ve made in the past, including cold turkeying. 

 

Are you still on 0.25mg of Clonazepam, the amount you reinstated in January, 2018? When you say you are measuring it roughly, what does that mean? Are you having trouble getting the exact measurement? 

 

Have you missed any more doses since the last time? I remember you missing a couple of doses a number of months ago. 

 

Take care, sending hugs🤗

[Waterfall]

@Carmie

For some reason I can't seem to see the

signatures, or remember how to edit them.

If my signature still says I am measuring

roughly, that is no longer the case.

In May of 2018 my husband bought

a scale and now measures my pills as

accurately as he can.

I am still taking whatever dose it says.

I haven't changed the dose or how it is

made since we got the scale. Before that,

We were just cutting the pills in pieces,

little realizing the disastrous effect that would have.

 

Right now I've woken up

in the middle of the night.

I feel super weird/strange,

but I'm having trouble putting my

finger on exactly what is bothering me.

 

My first reaction is that my heart

is doing something funny.

But I'm not sure what.

It's not the usual pounding.

My Fitbit is low battery,

so I just got up and plugged it in.

I felt very weak and unsteady when I got up.

The desk is at the end of the bed,

so it's not like I had far to go.

I also feel quite jittery right now.

And I am starting to feel a heat wave.

 

Oh yes, you asked about missing doses.

Several months ago, I missed a three doses

in a row after a mix up on a refill.

I don't remember exactly when that was.

 

In February, it happened again, this time because we thought I had another refill,

when I did not. 

I had to get into see a doctor to get it refilled,

and this time u also happened to miss three

doses in a row.

The first time, it was a hiccup.

I felt no specific effect right when I missed,

and moderate waves in the couple weeks

after the fact. 

The time was absolutely awful.

Before I'd even missed the third dose,

I could barely climb the stairs,

or even get to the doctors office at all.

I almost missed a bedtime dose a short

while later, but woke up in

the middle of the night feeling awful,

and remembered that I had missed it.

Since that time I have missed one pill,

one other time,

perhaps about two weeks ago,

I missed the morning dose.

I didn't realize until bedtime 

that I hadn't taken it.

 

I used to have such a good memory.

Lately I have such a hard time remembering.

Whether it's remembering to take it.

Or remebering if I've taken it.

I have a pill box that really helps.

But obviously I still make mistakes.

No matter how hard I try.  😢

 

I wish I could get off of it, 

so I couldn't make mistakes anymore.

For that matter, I wish I'd never

made the mistake

of taking it in the first place.

Or hey, if we're wishing, 

I also wish I had never cold turkeyed.

Or taken any antidepressants

inthe first place.

I wish I'd recognized withdrawal

the first time around,

and not used more drugs.

 

But one can not change the past.

Not years past, and not one dose past either.

 

Right now, 

I have to make it through this night.

And then the following day.

And then another night.

And then another day.

And another night.

And again, and again..

One bit at a time.

 

It's always hard to be doing lousy.

It's hard to have been doing better,

and to be doing worse again.

 

Other factors that may be in play include:

1. A recent attempt by my husband to

'fix' my electrolytes, by slipping extra salt

into my food and drink. I was struggling

with feeling dry before that already.

This did not help. His last attempt, before

I got through to him to stop, was yesterday

morning when he salted my toast.

2. A recent illness with a bad cough.

3. The antibiotics and inhaler that I took

to survive the cough.

I finished the antibiotics after a week

as prescribed. 

I took the inhaler twice a day at first,

then I only took it once a day for a few days.

Last night I didn't take it,

and felt very anxious going to bed without it.

Which is weird,

because I didn't ever feel that

it made a big difference at all.

 

My arms almost hurt too much to keep holding up my phone.

 

I'm going to go put my Fitbit back on.

And see if I can get back to sleep.

 

Please let me know if there is any other

helpful information I can provide.

And if I can do anything else,

that will help me do better.

 

This was not how I envisioned

the kids school break. 

Or hey, any part of my life, for that matter.

 

Wishing you all the best,

Waterfall.

[Rosetta]

(((Waterfall))). I'm sorry that you are feeling so bad, but that little window is good news.  I'm glad you have accurate measured doses - so important.  Hang in there. All my love, Rosetta

[Waterfall]

Before I feel back asleep,

I thought of a couple other things

that could affect his I'm feeling.

 

I took larger doses of vitamin C

I thought it made me panicky the first time.

After that I actually stored because

I thought it made my esophagus burn.

 

I also slept with wet socks, 

which is supposed to stimulate blood flow.

Not sure if that made any difference.

 

And finally I've just been eating more fat,

and less carbs, but that should not make

too much difference either.

 

I can't think of anything else I've done

or am doing different.

 

I can say that today I am very sore.

Can't stand for long at all.

I'm coughing and burping a lot.

I have a headache.

And my throat hurts again.

 

Makes me wonder if I really should take

the inhaler or not.  I thought the soreness

down my chest was caused by the inhaler,

but it's still there, and I didn't take it. 

Plus I thought that the inhaler helped

with the thick phlegm, but that was bad

yesterday already, before the time I would

normally take it. 

So I just don't know.

 

I mostly think it's just a cough.

My daughter had it too.

And it will probably hang around

and then go away again.

But what if I'm wrong?

I feel pretty awful today.

So I'm afraid to take it.

And afraid not to.

 

My anxiety in general lately has been high.

I think that must be a withdrawal effect.

But, as usual, it's lousy.

 

I also wonder if the cough could be

a withdrawal effect as well. 

I don't have any clue how I could tell.

 

Oh, the joys. 

 

May the sun shine brightly on you all.

Waterfall

[Waterfall]

Oh hey!

@Rosetta

I didn't see your post earlier.

Thank you for stopping by.

Yes, little windows, no matter how small,

give us hope, even when things get tough again.

The hard part is not feeling like

the fact that you don't always have

windows isn't something you are doing wrong.

 

[Rosetta]

3 minutes ago, Waterfall said:

Oh hey!

@Rosetta

I didn't see your post earlier.

Thank you for stopping by.

Yes, little windows, no matter how small,

give us hope, even when things get tough again.

The hard part is not feeling like

the fact that you don't always have

windows isn't something you are doing wrong.

 

I go back and forth about whether anything I do or don't do would change things.  Of course, if I was on drugs, holding would be key, but otherwise, I can't see much correlation really other than stress!  Stress makes everything worse for sure.

[Rabe]

Hi Waterfall...

Just wanted to share that I reacted badly to an inhaler...made me very anxious!  I also find that the chest soreness I get is reflux or receptors in gut from tapering or in your case could be forgotten doses....and I get lots of phlegm with it.  I started a notebook with daily log and when I take the med I write the time so that I know I have.  Keep it near by...it might help.  DO you use a pill box or anything...thats hard with tapered doses.  

Just thinking about you and hope you feel better!!💜

 

[Carmie]

Hi Waterfall, 

 

You said you keep forgetting whether you’ve taken your doses or not. Missing doses, like you’ve done can ramp up withdrawal symptoms. If you keep missing doses, even occasionally, you will have trouble stabilising. 

 

I know your memory is bad ( mine is too, and I’ve double dosed twice), but you really need to put in more strategies so you don’t forget them again. The pill box doesn’t seem to be enough for you.  Maybe set the timer on your phone and get someone else in your family to set a timer too. It’s VERY IMPORTANT not to miss doses. 

 

You’ve run out of scripts a couple of times too, and didn’t have meds for a few days. When you get your meds, put on your calendar when they run out, and get a refill way before then. You really are going to have trouble stabilising if you keep missing doses. 

 

How’s that rocking chair of yours going? I got myself a weighted blanket, and I love it!

 

Take care, sending hugs🤗

[Waterfall]

@Carmie

Sorry. 

I wish I had responded sooner. 

I thank you for your input and advice. 

 

I have been doing pretty rough. 

Haven't been up to doing too much. 

Only the essential stuff, mostly.  

 

Today, I finally felt a tiny bit better. 

Didn't have as bad a cortisol spike this morning. 

Actually did something fun that wasn't in my chair. 

 

And what do I do!?!!? 

I forget my pill this morning. 

I remembered later... 

only to forget again. 

And still not take it. 

Not even late.  

 

I want to kick myself. 

But that's neither easy to do, 

nor particularly constructive. 

 

And I was just getting hopeful again. 

Now I am sore, and cranky, and... 

Trying not to get crazy discouraged.  

 

Thinking of you all, 

Waterfall. 

[Rabe]

Oh Waterfall...I am so sorry!  I used to do that a lot more than I do now.  Is there a system you can establish so you remember?  Put the pill box where you see it?  I keep a journal and in the back write the times of each med RIGHT after taking so I know I did take it and SO take it.  Sticky notes?  IDK.. Something to help as I know how that can throw the system off.  Thinking of you!💜

[Carmie]

Hi Waterfall, 

 

I’m sorry you’re still struggling, but for you to stabilise you will have to try and stop missing doses. Your brain can’t handle all the missed doses. Rabe has some good ideas. Also, you could set the timer on your phone to the time you need to take your meds.

Maybe put a calendar on the wall, and tick it every time you take your dose. 

 

We can’t change the past though, so no use stressing about that. From today start putting in a system that might work for you.

 

Take care, sending hugs 🤗

[Carmie]

Hi Waterfall, 

 

Just checking in to see how you’re doing. Have you managed to not miss any more doses? Have you got some kind of plan in place so you take them regularly?

 

Take care, sending hugs🤗

[Waterfall]

Hi again everyone!

Good news!  I have a new computer!  Yay!

Makes it a little easier to type messages again. 

 

So. 

I'll admit, I'm particularly glad to hear from you Carmie. 

I was actually avoiding posting, 

because... 

I felt unworthy to be here. 

I felt like a stupid screw up.  

Who's problems are my own fault. 

And who doesn't deserve your friendship and support. 

 

I did miss one more dose after that. 

And I was horribly late one other time. 

Both in the next few days after my last post. 

I was so discouraged. 

I was trying so hard, and kept messing up. 

 

Right now, my husband is on board with trying to keep me on track. 

He now not only makes my pills for me, 

but he also makes sure that I take them.  

So since then, between my own efforts, 

and his, 

I have not missed any more. 

 

On a more thankful note, 

despite the frustrating aspect of some symptoms, 

I have been able to keep functioning. 

This sometimes surprises me. 

I might have a rough episode, 

a terrible night, 

or a particularly awful symptom, 

but so far, I've continued to be able to function. 

 

This is very different from last year, 

and even a month or two ago, when I was sometimes so weak and unstable. 

Right now, it is certainly not always easy, 

but I have been able to do all the things I most need to. 

 

Is my house as tidy as I'd like? Not even close. 

Am I still plagued by guilt for all the things I don't do? Yep. You bet. 

But do I get my kids to school. Fed. Clean. And dressed?  Yes, I do. 

I even managed to go to the store a number of times lately. 

And to my children's Easter concert!

I been to church BOTH services for the last two Sundays as well!

 

Which is all good stuff, of course. 

Especially in light of the fact that my husband is having his own health issues. 

So right now, he can't drive.  

Oh, and he just lost his job. Big lay offs at his company. 

Not his fault. 

But lousy all the same. 

 

So, yeah.  

I've gone through some pretty horrible nights. 

Long stretches awake. Nasty cortisol spikes. 

I've had strange pains, pressures, tingling, burning. 

Headaches. Stomachaches. 

I've been jittery. Moody. Irritable. Weepy. 

 

Sometimes my chest is tight. 

Sometimes my throat is tight.  

I've had trouble swallowing a few times. 

Sometimes I feel pressure in my ears. 

Or a sensation like water is running in them. 

 

My mouth, eyes, hands, even feet have been dry. 

I especially wake up in the middle of the night, 

or in the morning, with a terribly dry mouth. 

Not sure if that's actually because I'm dry, 

or if it's just another symptom.  

 

My husband, because of his health issues, 

has been big into researching the keto diet lately. 

I haven't been able to find much on keto and withdrawal,

but I've been eating mostly the same things that he is lately. 

Really not sure if it's helping, or not at this point.  

 

Once in a while, for a few minutes, I feel almost normal. 

Then I move. Or don't. Or just wait, 

and something else bothers me, 

reminds me that I don't usually get to feel normal anymore. 

But it also reminds me that maybe I will get to. 

More often. 

Some day. 

 

So yeah. 

I hope I hear from some of you again. 

And I hope to see more bright days ahead.  

I hope you've all seen some good days too. 

 

Best wishes, 

Waterfall. 

[Rosetta]

I'm really glad to hear that you have been functioning lately.  That is such good news.  Yes, you will get there eventually!!! -Rosetta

[Carmie]

Hi Waterfall, 

 

I’m so glad you’re getting some good days. I’m also really happy that your husband is helping you with the medications so you don’t miss any again. If you continue not missing medications you will probably find you’ll have more days where you’re functional. Yay, for having good strategies in place! 

 

I’m sorry you’ve still got a lot of symptoms. We will get there one day, sending hugs🤗

[Rabe]

Hi Waterfall...Im sorry about your husband and his job and that you are dealing with so much...stress is not a friend in all of this.  

Grateful He can help you keep on track with the meds...I too think consistentcy with those may help how you feel overall.

Take care dear friend!!  💜

[Waterfall]

Wow. 

Having an exceptionally rough day today. 

I've been struggling the most lately with 

tightness in my chest, dry mouth, and shortness of breath. 

 

Well, last night in the evening, my lips began to burn. 

Then the roof of my mouth began to hurt. 

And then my throat began to hurt. 

 

This morning, I woke up early, and felt like I was gagging on my own phlegm. 

My lips are so dry, swollen, and sore. I've put lip balm on them twice. 

My mouth hurt so bad, I almost couldn't eat this morning. 

I've had lots of tooth/nerve pain before. This is different. 

After lots of dry mouth/nose/throat, today my nose is suddenly running. 

My nose hasn't run in like, forever!  

 

At the same time, I have a headache, my neck hurts, my shoulders hurt,

my lower legs hurt, and my heart has been pounding on and off all day. 

First thing this morning, I was super jittery and anxious.  

 

Sometimes I am afraid that something other than withdrawal is happening. 

But so far, there is nothing else that makes much sense. 

I find it hardest to shake the idea that I'm still doing something wrong. 

Or failing to do something really important. 

I've been careful to take my pills regularly lately, so it's not that, at least. 

 

I just want to feel better. 

The glimpses of 'normal' are so wonderful, and so torturous. 

I want more normal! 

 

Anyway. For now, I feel a bit better than I did first thing this morning. 

And I consider that my nose running is better than when it was dry!

So. Here's hoping for improvement!  

 

I hope you're all having a better day!

Best wishes, 

Waterfall. 

 

[Waterfall]

Bad headache.

Sore throat.

Chest hurts. Heavy.

Nose running.

Pressure in ears.

Tongue hurts. Lips hurt.

Should almost be like a bad cold/flu.

But nothing is normal anymore.

Can barely walk across the room again.

Today, I cried. 

[Rosetta]

HI Waterfall.  Oh, this is so tough.  You probably have a cold.  When I have one it is so much worse in WD than it was before.  The immune response seems to make all the WD symptoms much more intense.  It's hormone chaos.  I hope it clears up soon.

 

All my love, R

[Waterfall]

Hey @Rosetta

Thanks. It's nice to hear from you. 

You're right. I definitely have a cold. 

By last night, it was pretty clear. 

I'm so used to all sorts of weird symptoms, 

that it was actually hard to tell at first. 

But not anymore. 

 

I was thinking this morning of posting 

something along the lines, 

that it's just unfair for someone to be

in withdrawal, and sick, at the same time. 

That just shouldn't be allowed to happen.  

 

I know that I'm 'just sick'. 

But wow, I had no idea I could hurt so much in so many places. 

I'm glad that my headache from yesterday is more or less gone. 

Pretty sure the fact that my mouth burns isn't a typical cold symptom. 

 

I'm surprised that I managed to make it out for a meeting I had last night. 

I wasn't sure I was going to be able to. 

Now, it wasn't easy, and by bedtime, I was shaking mess. 

Didn't sleep well either. 

But I continue to surprise myself with what I can survive. 

 

Thankfully, I don't have much to do today. 

Just get the kids to and from the bus, pretty much. 

I don't even feel like eating much. 

Just drinking lots.  

 

And coughing. 

And blowing my nose. 

 

It's a funny thing, actually. 

I keep finding myself pleasantly amused, that I am happy that my nose can run. 

Right???

I actually thought at one point, that it would never run again. 

I've had a couple colds where it just wouldn't run. 

And now it's running like a faucet. 

And I'm actually glad. 

As much as I dislike having to blow it all the time. 

It's actually better than having a crazy sore, dry nose instead.  

 

So... hooray for a runny nose?  

Oh, what a life!  

 

Here's hoping you're all having a bright and better day!

And here's hoping I kick this cold fast!

This is just miserable.  Blech.  

 

Best wishes, 

Waterfall. 

[Rabe]

Gosh Waterfall...so hoping your cold/nose dries up soon!  SO sorry you got socked with that!  Grateful you have some time to recuperate...as much time as there is with kids and all.  Take care of you WF!!  💜

[Waterfall]

Wow.

I'm not sure I can remember such pain.

My back hurts.

My shoulders.

My arms.

My chest.

My neck. 

My head. 

Pressure in my ears.

On top of the runny nose and cough.

It feels alternately like someone is

Twisting a knife in my back, or my chest.

 

This morning I sat on the floor and cried.

I usually don't take anything, for any reason,

But this morning I took a Tylenol. 

 

I don't know what is the fault of this virus.

And what is from withdrawal.

And what might be from ketosis. 

 

But I sure can't wait for this pain to go away.

 

Best wishes,

Waterfall

[Rosetta]

(((((Waterfall)))))

[Rabe]

So hoping you are finally feeling better Waterfall!!! 💜

[Waterfall]

Thanks @Rosetta

 

Glad to hear from you, @Rabe

I'm glad that you posted again,

because I've been meaning to get back and post myself, 

and I haven't been getting around to it. 

You've given me the impetus that I needed. 

 

Not sure how to describe how I feel today. 

Such a roller coaster. 

Sometimes I start to think that maybe I don't feel so bad. 

Other times I think, wow, I didn't know I still felt this bad. 

 

I tried to describe to someone yesterday what withdrawal is. 

I think I left her with the impression that it's all about being in pain. 

That totally doesn't do it justice. 

But unless you experience it, 

it's somewhat hard to understand. 

 

For me the most frustrating this right now, is the limitations. 

I find it hard to anything.

That's truly the hardest part. 

Anything I do seems to make the symptoms worse. 

Even sitting still too long sometimes makes it worse. 

I just want to DO more. 

 

But just this morning I tried to stand and talk to a friend, 

and after a short time, my legs hurt, 

especially my lower legs. 

And my chest slowly grew tighter, and tighter. 

Which made my anxiety rise. 

 

I tried a walk around the garden,

but I could feel the back of my neck begin to hurt. 

So I'm back in my chair. 

And my legs still hurt. 

And my back still hurts. 

 

Worst of the pains has got the be the pain in my chest lately. 

So often it hurts, or feels heavy, or tight. 

Sometimes my stomach also feels tight. 

I'm not sure if I hope the chest discomforts are more because of 

the cold/flu that I have right now, or if I hope it's withdrawal. 

Either one seems kind of scary right now. 

 

Which actually leads me to a question I want to ask. 

I'm hoping that Rabe in particular will give me her opinion, 

but I'd love to hear from anybody on this.  

You see, many of the colds I've gotten in the last few years

have turned into chest infections. 

(I'm hoping my current one isn't one of them!

  Hence my fear about the chest pain!)

So after my last one, one doctor I saw sent in a referral for a

.. I'm not sure what it's called. A lung test of some kind. 

I took an inhaler during that last illness. 

And I had a horrible episode after I started, 

and another after I stopped. 

 

So. Do I go for the test?  Or do I decline? 

I know, I know. You can't offer medical advice. 

But I'm looking for some thoughts. 

My own doctor still doesn't really believe in this withdrawal stuff. 

He'll finally admit that maybe I respond to meds different than most. 

But he doesn't think any of my problems are -caused- by meds. 

Only that they aren't fixed by them. 

 

Anyway, the lung test, I'm not sure, but I think they test your lungs.

And then they get you to take an inhaler and then test it again. 

I'm a little afraid of taking another inhaler. 

I'm doing bad enough right now. 

I don't want to make things any worse. 

 

Last night my lower legs both felt thick. 

Today my chest pain was worse than usual. 

Neck pain. Shoulder pain. Headaches. 

Vision blurriness. Sore eyes. Dry lips/mouth. 

And, oh, so much heart pounding. 

Tingling. Burning. 

Cortisol spikes. 

I'd love some relief from, well.. any of them. 

 

Hey! I think my dry lips are a little better than last week!

Well, that's something at least. 

I've been putting balm on them several times every day. 

And I had a night last week, where my whole body hurt. 

It was so bad that I couldn't sleep. 

I'm glad it's not that bad anymore.  

I'm also glad that I don't have a headache at the moment. 

 

Here's hoping things keep looking up!

And I hope you've all been having a better day!

Best wishes, 

Waterfall. 

[AuntieBea]

Hi Waterfall,

I’m stopping by to say hello. I haven’t been active here on SA for over a year and noticed a few days ago that last May you stopped by to say hello to me. Thanks. It was very kind of you to check in with me. It helps so much to hear from others who “get” the frustration and downright scary experience of withdrawal. It’s generally a very lonely road. Like you said in your last post, unless you experience it it’s somewhat hard to understand. Hard to explain, hard to understand, and very isolating.

 

I understand your hesitance about trying yet another inhaler. Every potential remedy for our various health issues whether it’s a medication of some sort, a supplement, or even exercise, can end up being just another aggravation for our overly sensitive nervous systems. I suspect that I’ve hit this glitch in my own taper/recovery process from one or both of the antibiotics I took in March. I’m usually so cautious about taking anything at all but was exasperated from recurrent UTI’s. The UTI’s did clear up but I am left wondering...I had been feeling really well for several months prior to that on an extremely slow and steady taper.

 

Waterfall, I so relate to the pain you have experienced since childhood...when I was reading through your thread this paragraph jumped out at me...

“I've struggled with anxiety since I was 5, or so I'm told.  It's been there as long as I can remember.  The details blur over the years, but I think the first time I also struggled with depression, that I'm aware of, was in my teens.  I've always struggled.  Always wondered why I felt so broken compared to everyone else.  And why everything seemed extra hard for me.”

 

I also have experienced anxiety/depression since earliest childhood—from I don’t remember when. I don’t remember much at all, just the pain. So much of my recovery now depends on getting to the bottom of this anguish and trauma—not to dwell on it of course, but to allow myself to experience it fully so I can also release it. Antidepressants were just a very temporary “fix” that ended up creating lots more problems in the end. I often read about people here who look forward to getting back to the life they had prior to AD use, or to the person they used to be. It’s been taken away from them by the drugs. In my case, maybe yours, there is not a prior life or self to harken back to, to look forward to resuming in recovery. For me the journey is more about discovering and evolving an experience of life and myself which I’ve never had before. It’s a really huge piece of healing work that I have to believe has meaning for me right down to the debilitating symptoms I’m experiencing today. Mostly, I don’t know what the meaning is, but now and then I get a glimpse of it and for that I am so grateful. Maybe that’s what windows are.

 

Thinking of you, and picturing you healthy, happy, and whole.

Love, AuntieBea

[Rosetta]

Hi Waterfall, I'm thinking of you.  So try that I can't think of anything else to say.  We just have to get through this to the other side.  A big hug (((Waterfall))).  I hope today is kind to you. - Rosetta

[Waterfall]

First of all, 

@AuntieBea and @Rosetta 

thank you for stopping by. 

I know that I haven't been posting often, 

but I always notice when I get a post, 

and I read them right away. 

And always treasure them. 

 

I've spent a lot of time thinking about what you said, AuntieBea. 

About not having a prior life, or self, to harken back to. 

I've wondered if that is me, or not. 

I think in a way, I've looked forward to getting 'me' back again, 

in that there was a 'me' before, that didn't have a lot of these physical symptoms. 

I want the health that I had, back. 

 

Now, not that I had perfect health. 

Or that I didn't have issues. 

But I'd take back the level of misery I had before, 

over the level I have now, 

any day. 

 

Even if I'm not always sure I remember, accurately, 

all the times in the past, and how things actually were. 

 

But I find interesting this idea you mention too, 

of disovering a new life.  

Of 'evolving an experience of life and myself which I’ve never had before."

 

And I wonder if both, or either, is even possible. 

Is it possible to recover the little I had? 

Is it possible to develop something new? 

To experience a new me, I've never even had? 

 

Every time I wonder, is this a window? 

Am I recovering a little?  

Every time, I feel awful again. 

And I think, nope, I'm still broken.  

 

Right now, the goal in front of me, is just two things. 

Keep functioning.  

And somehow get off this drug. 

 

I don't even know if that second goal is realistic.  

Somehow I feel like I won't begin to truly heal, until I get all the way off. 

So I'm just trying to stabilize, whatever that looks like, so that I can 

actually taper off what's left of one of these nasty drugs. 

I have no idea if that makes sense.  

For that matter, I don't know if the first goal is always realistic either. 

 

It's hard not to despair sometimes. 

 

But this new idea still intrigues me. 

The idea of finding, of building, discovering, evolving? A new me. 

One that can move beyond some of this brokenness. 

Who can still live, and grow, and learn. 

Add something new. 

Leave something old behind. 

 

If only I knew how.  

 

I've been trying to 'fix' myself, for as long as I can remember. 

To think the right way. 

To act the right way. 

To do something, to be a little less broken. 

To have a little hope for the future. 

 

I wish there were less questions. 

And more answers.  

 

As always,

Best wishes,

Waterfall. 

[Rosetta]

Hi, Waterfall,

 

Yes, you can move beyond this brokenness.  It's a physical condition that is slowly correcting itself.  I'm realizing that over and over again as I heal. 

 

Rosetta

[Rabe]

Hi Waterfall....you are so insightful and I am grateful to read your posts and hear the hope in them even if you dont consciously feel it sometimes.  

You are mose special and I believe that part of who you were is still there...and there will be some of a new you that will be just as lovely as well.

Take care of you!!  Love and hugs!💜

[Waterfall]

Think often. 

Write seldom.

 

So hopeful. 

Sometimes.. almost normal.

Glimpses.

 

Other days.

Crash.

Grief. 

 

A bit better.

A bit worse.

Which way am I going?

 

Doing well! 

Going out!

Busy.

Hard. 

But fun.

 

But up.

And down.

Worse again.

 

What now?

Oh.

An infection.

 

But medicine! 

I feel better.

I go out.

 

Next day.

Feel awful.

Now what is it?

 

The infection?

The withdrawal?

Just too busy?

 

Feeling awful.

Scared.

Should be sleeping. 

 

Wanted to share.

Wanted to be quick.

Feels poetic.

 

Kinda fun.

Kinda sad.

Mixed feelings.

 

Think of you all.

And you think of me.

We share. 

Joys. And misery.

[Waterfall]

I keep feeling like I should be doing another more 'proper' update. 

And I keep not doing it. 

 

So frustrating. 

All the symptoms.  

 

I know that windows and waves is the normal pattern. 

I used to only be glad, that there were windows. 

At least it was not always bad. 

And the windows gave me hope. 

 

Now I find it so frustrating. 

So disheartening. 

Every time I feel a bit better, 

I feel more hopeful... 

I fall back down. 

The symptoms return again. 

And I become discouraged again. 

Will I ever truly get there? 

Somewhere. 

Anywhere. 

 

Recently I was doing a bit better. 

But they I felt much worse again. 

I had all the symptoms of a kidney infection. 
I went to the Urgent Care clinic. 

There was blood in my urine. 

There were white blood cells in my urine. 

So they gave me antibiotics. 

 

I went back again, when the symptoms did not improve. 

Keep waiting they said. 

So I did. 

They symptoms still did not go away. 

So I went back again. 

 

Then they said, we took a test.

It take some time.  

The results are back now. 

There was never any infection in the first place. 

We do not know why this was this way, 

but you have no infection. 

You never did. 

 

Well, the symptoms have improved some. 

But they are still there. 

They still bother me. 

 

Some time ago, I went out for the day. 

I did so well. 

I walked 2 km!

I was so pleased. 

 

But then this all happens. 

I still struggled with bladder irritation and back pain. 

Is it even withdrawal? 
Or something else? 

Sometimes it feels like no one knows anything. 

 

Then last week, I didn't feel great, but I did really well, 

I went out places, and I had fun. 

Just that, by itself, was pretty great. 

Even though it was hard.  

 

Then Sunday, I woke up, and I could barely walk straight. 

I was dizzy. I felt shaky, and weak. 

Like I hadn't in a long time. 

 

Up. Down. 

Will it ever end?  

Will I ever feel normal one day.. 

And the next... 

And the next... 

 

I am not even off this horrid drug. 

This evil benzodiazepene, 

that has done so much to mess up my system. 

 

I don't know where the withdrawal ends, and I begin. 

I don't always know what is up, and what is down. 

I just try to keep moving. 

I try to figure out what is enough, and not too much. 

I wish I knew what the next step was.  

I wish I knew where the end of the tunnel would be.  

I wish I knew if there would ever even be an end to the tunnel. 

 

And there is always so much else going on in life too. 

A husband. 

Children. 

Parents. 

Siblings. 

Nieces. 

Nephews. 

Cousins. 

Friends. 

And all the things they are doing, dealing with. 

 

School. 

Grad. 

Weddings. 

 

As I think about this, 

I am glad for all the things that I have still been able to do. 

 

At the same time, 

I think of the fact that we are supposed to be camping next week. 

And I am scared. 

How bad will I feel? 

Will I be able to participate? 

How will it go? 

 

And I remember that my kids can't swim yet... 

And I think of all the things that I have wanted to do, 

and haven't been able to. 

The things I want to do around the house. 

The organization. 

The preparations. 

Trips to the store. 

Trips out to the park. 

To swimming lessons. 

To gymnastics. 

Or sports. 

Martial arts. 

Or to the lake. 

Boating. 

Fishing. 

None of those things have happened. 

So much time goes by, 

And there is still so much that I can not do. 

So little that I can handle. 

 

I want to do more. 

I want to feel better. 

I want to live. 

To dance. 

 

Will I ever?  

 

Sometimes, the life I dream of, seems so close. 

Other times, it seems so far away. 

So impossible.  

I'm not sure which feeling is worse. 

To feel it so close, and not yet reached. 

Maybe never reached. 

Or to feel it truly impossible, 

and maybe dream of something else?  

 

I don't like either idea in the end. 

I want to get there. 

I want to be done with windows, 

and emerge into the light again. 

To feel free. 

 

Free to feel the normal ups and downs of life. 

Without this dark tunnel oppressing me. 

 

I know my life has always been hard. 

But not this kind of hard.  

I wish I knew how good it was then. 

I wish I'd been more grateful for what I had. 

I wish I'd been able to find my way to a better me, 

with the tools I had back then. 

With the me I had back then. 

 

I wonder if it's still possible. 

To find a better me. 

Both mentally, and physically. 

 

I've grown. 

I know I have. 

I want to grow more. 

And I want to grow, unshackled by all these horrible symptoms!

 

I want to be free. 

And I want to dance.  

 

 

Thanks for listening. 

I think of you all often. 

And I hope you've had a better day.  

With love, 

Waterfall. 

[Rabe]

On 7/18/2019 at 1:41 AM, Waterfall said:

And I am scared. 

How bad will I feel? 

Will I be able to participate? 

How will it go? 

 

On 7/18/2019 at 1:41 AM, Waterfall said:

I want to do more. 

I want to feel better. 

I want to live. 

To dance. 

 

Will I ever?  

 

On 7/18/2019 at 1:41 AM, Waterfall said:

I want to be done with windows, 

and emerge into the light again. 

To feel free. 

Hi Waterfall...I am glad that they did a culture...I'm sorry they didnt wait and get that back before you had to take a med...but am glad to hear there was not one.  Wanted you to know that I have RBC's in my urine off and on a lot.  Im not sure what it is.  I get urgency and soreness on and off...not sure if is tapering...had it before that but not nearly to this extent.  It comes and goes.  I find certain foods make it worse...acidic things and sit C seem to set it off.  Perhaps a food journal would help you with that?

I also wanted you to know that I feel, and I think many many others here, as you do in so many ways.  I am afraid about how I will do if I go anywhere..I feel I want to live rather than watch others live...and more than anything I want to feel free again.  I had felt like a bird in a cage for years with the severe panic disorder with agoraphobia...and then I was able to get out a bit, and a bit more often, and farther, and then farther, and I finally flew, literally, in a plane which I would have never thought possible and had some lovely trips with my children.  Now I feel back in that cage and it breaks my heart.  I am hoping that in not too long a period of time things will get better and I will have some hope again that it cold be permanent.

Know that I am thinking about you WF!!!  Hope you get to go camping and that it goes well!!! Love and hugs to you!!💜

[Rosetta]

(((Waterfall))). and (((Rabe))). Yes, a bird in a cage.  That's it.  I feel trapped.  I hope that getting outside will help you, Warerfall.  

Love, Rosetta