Waterfall: introduction

[Waterfall]

Oh, @mirage 

I'm sorry to hear that you are having

such a tough day today.

I hope it gets better.

 

Myself, I'm doing a bit better mentally.

For now.

Hopefully I do better physically soon.

[mirage]

One client finished. Waiting for my 3:00. All wonderful ladies on my schedule today. I am blessed!

[DMV64]

Hi Waterfall.

How are you doing. Was just thinking of you...

[Waterfall]

@mirage  Glad to hear that!!

 

@DMV64  Hey! Glad you stopped by! 

I hope you are doing better.  
Better than what, you ask? 

Better than before!  Better than yesterday. 

Or better than an hour ago.  Or better than... anything!

I think that's better (and more realistic) than wishing you were well.  

Though, to be fair, I wish you were well too.  

And myself, for that matter. 

 

Right now, I am plagued by the limbs of ice. 

And the breastbone vice.  

I'm also kinda jittery and tense. 

So having a hard time sitting still, 

and talking lots (or rather, typing...)

in spite of the fact, that I don't want to move, 

and my fingers are really achy and sore at the moment. 

(Truth be told, to get the right effect, you should be 

reading this fast.  Not quite auctioneer-type fast, but

faster than normal, kind of fast, like you are jittery, and

are talking faster than normal, kind of fast...)

 

Craziness.  

 

Oh, and to top it all off. 

My brain keeps singing 

DISney, JUNior, 
DisNEY, JunIOR!
Over, and over, and over.  

Rather forcefully too. 

And.. sorta fast.  

And my kids aren't even home!

 

From what I hear so far (they are still on the road)

they had a really great day!

 

Trying right now to get some lunch, no wait... supper, into me right now. 

Duh.  

 

Yeesh.  

Hope I feel a bit better soon.  

But hey!  At least my back isn't hurting right now! (Though maybe I just jinxed it...)

Just my chest. 

And my fingers. 

And my, well... limbs of ice!

 

I already put socks on (which I have done in AGES)

And I'm about to wrap up in my blanket.  Brrrrrrr.... 

I've been chillier the last couple days, but this is just ridiculous!

In the same room as my parents today, they kept complaining it was hot. 

Pshaw!  

It probably is, but my body don't know it!  

[Rabe]

Hi WR...glad to hear you are feeling a tad better...headed in the right direction.  Think about you daily!!! 💜

[Rosetta]

Waterfall

 

Oh, I am in tears!!  I'm sorry you cannot go on the outing.  That is so difficult.  I used to sit and cry while my husband went to the beach with my daughter.  

 

I think you have to look at it as having time with your little one.  The little ones don't care what you do.  They just want to be with you.  They feel safest at home.  It's so important to carve out that time when they are little.  

 

Maybe that can be the silver lining?  You are being forced to do what many parents wish they could?  To just be with your baby?  I often feel that I have the emotional wearwithal of a child during this horrible experience.  Maybe that helps us be better parents?  I see so many parents who are running around like chickens with their heads cut off.  You are always there at home for your kids.  That's how they will remember this time -- that you were there for them.  Everything else is extra, but ultimately not all that important.  I have tried to provide my child as much of a sense of security and groundedness as I could because this experience has taught me just how important that is.  It takes amazingly little to do that -- you simply have to be there to snuggle with them and read a book.

 

As I get well, I keep realizing that a lot of what is wrong with me is that my brain thinks something is terribly wrong with the world.  Everything is "off."  Nothing looks or feels right.  There is a slant to everything as if I'm living in a different world than those around me.  I am, in fact, living in a different world -- I have intense anxiety, my hormones are all wrong, my muscles are tense and hard which makes my joints hurt, and I can't keep anything organized.  I'm tired most of the time.  I'm not living in the same "world" as others, but my child has no idea that my consciousness is sometimes in an alternate universe of pain and fear (except when I cry.)  Overall, she cannot conceive of that happening in my mind.  So, I'm just her mom, and I look just fine on the outside.  Whatever I'm doing, as far as she is concerned, I'm being a mom.  But most importantly, I'm HER mom.  So, I think that if my husband and I didn't have to tell her I was sick to explain why I couldn't do certain things, then she might not even be aware that I was different.  

 

I told you all of that to try to say that I think you can "fake it" with your little one without even trying.  Just be who you are right now, and that will be exactly who he needs you to be.  Try, if you can, to take this day as a gift and plan more of them.  Perhaps it's an example of something you can salvage from this debacle.

 

Love, Rosetta

[Waterfall]

Thank you @Rosetta

I feel right now like I want to give that a longer and 

more in depth response than I feel like I'm capable 

of right now.  

 

But you're right about one thing for sure:

My kids likely don't miss all the things that I feel

that they are missing. It's ME who wants their

childhood to look like mine did. It's me who sees

the other families, and what they are doing, and 

wishing we were  it doing too. It's me, who thinks

they should be learning this, or that, or doing X

chores, or doing swimming lessons, or... whatever. 

They aren't complaining.  

Well.  At least not most of the time.  

Not really any more than most kids do, I'm sure. 

 

The one that stings me sometimes, is when my 

eldest will be talking with me, and he'll just off-hand

say something like, 'Oh? You're coming? I thought 

you never leave your chair." Or he'll tell his siblings, 

'No, Mom can't come play this game, she never 

leaves her chair."  

 

I was also thinking about another thing. 

I know I wouldn't be half as organized, or even, like

a tenth as organized... a hundredth? if I weren't for

my Mom, and my Dad. On the other hand, I probably

wouldn't be as stressed either, because they are always

trying (with the best of intentions) to push me. 

Some of that is good encouragement, and some of that

is my own pressure on myself, to meet the standards

that I want to, because I think it would please them, 

or because I think that's what they want.  Whether that's

the standards of my house, or my schedule, or what we

do as a family, or what my kids are doing. 

 

I guess it's not that different whether I don't meet their

standards, or my perception of their standards, or just

my own standards period. It's all emotional stuff to work

through. Even the most 'amazing' parents, think that they

are failing in some way or another. It's something we all

have to come to terms with at some point. Some of us

more than others. And everyone, at some point, has to 

figure out how to be happy with what they have. Even the

most wealthy person in the world, can't have everything. 

And everyone, big and small, has only 24 hours in a day. 

 

In other news... 

Wait, should I go with the good, or the bad symptoms first this time? 

I think I like to get the bad out of the way first in most cases. 

 

So. Woke up unusually early with a significant cortisol spike. 

My stomach was rumbling, and I had to get up to use the bathroom. 

It seems like I'm on an earlier, and more intense every day, trend right now. 

Not fun. 

This morning I was freezing again.  Then a little while later I was melting. 

Now a nasty headache has set in.  And I'm having trouble with my eyes/vision again. 

I've had some strange joint pains, that come and go, as well as chest pains. 

And my stomach can't seem to decide if it's hungry, or nauseated, or both at once!

I've also been dizzier the last few days than I was recently. 

 

But on the good side, the pain in my chest, side, and back hasn't been as bad. 

Neither has the stomach churning and gas.  

After days, and days, of dry mouth and lips, it seems to be a bit better today. 

I felt a bit stronger this morning, than I have for a few days, though the feelings didn't last. 

Though I was freezing and hot, I didn't have much burning today, on my back, or feet, or hands, or head. 

 

The things bothering me the most at the moment, are the vision, and the headache. 

Yesterday, it was dizziness that was worst. 

Before that, it was the freezing. 

Before that, the chest pain, before that, the back pain.  

 

Always changing around.  

Up, and down, and round, and round. 

I remember now... I was thinking this morning, that whenever

it goes up, or down, or changes, we're always prone to wonder what

we've done right, or wrong, to cause these changes. I was feeling 

worse the last bit again, so I was wondering what I did to cause it. 

Well, this morning, I decided that I'm meant to remember that this

whole things is already -known- to come with waves and windows,

so... who says I'm causing anything?  It's very likely going to go all

over the place, all on it's own. Not because I did anything right, or 

wrong, but because, well... because that's what it is. I really need to

remember that right now.  

 

Ah!  The eye twitch is back!  Nooooo!!!  It was gone for a while.  I'd 

almost forgot.  Nononono no!  Sigh.  I guess it could be something 

worse.  But I was glad to be free of that one for a while.  

 

Here's hoping your day is better today!

[mirage]

Hi @Waterfall You are really handling things beautifully. From one mother to another, you are a great mommy. To be so ill and having to take care of kids is truly remarkable. My arms are reaching out to hug you! 

 

I'm not sure if there is anything we do or don't do to make symptoms worse or to bring on waves. I have had times that I think I have don't too much and I do okay and then other times that I don't do much and get hit with a big wave. I wonder if our body is just going to do what it needs to do to heal? I just live each day in the moment, doing what I can and appreciating that. I count my blessings and I pray for healing. I have learned to accept each day as it comes. 

 

This is the hardest thing I have ever been through. I have always been a person who can plug through anything. This, has knocked me down. These symptoms are not any that you can overlook or ignore. They are with us all day, every day. I have yet to have a window that is symptom free. 

 

Stay strong friend. Hugs and prayers to you!

[Rabe]

💜Hi waterfall..I have been thinking about you lots and wanted you to know! 

[Waterfall]

💜 Hey, @Rabe

Thanks for thinking of me. 

I am -totally- overdue for an update. 

I have been so bad lately at writing posts in my head that never make it here. 

As much as I am sad that these 'posts' are lost, I think overall it's positive. 

I means that I haven't been in my chair and at my computer as much.  

And I haven't been as desperate, as despondent, and discouraged. 

I've been busier with ordinary every day things.  

 

Not last week, but the week before, I went to church.  

And it was a lot harder than I thought it would be. 

It was really particularly hard for me to go that day. 

I rushed home afterwards, discouraged, thinking it would

definitely be a while before I'd make it back again.  

 

So I stayed home the following week.  

This past Sunday, I didn't think I was going to go. 

But I did.  And it went better than I thought.  

As a matter of fact, I actually came home from church, 

writing a post in my head that said 'I think I had a window!!!'

It didn't last long, if window it was, but for a while, I felt just 

a little bit more normal.  More solid, I remember thinking. 

I stayed home that afternoon. 

 

Monday, I don't remember much of.  Good or bad. 

But Tuesday first my son had a friend over, and then

I had a meeting with my kids teachers at the school. 

Well.  I had pretty much told my husband I needed him to go instead of me. 

But when the time came, I thought, you know... maybe... just maybe, 

I can go with him!  

So I went. 

 

And it all went better than I expected as well. 

I felt pretty solid. Pretty stable. I walked around the school, 

and up and down the stairs there.  Sat for a meeting.  And did okay. 

Not without any symptoms, of course.  But bearable. 

 

And THEN... 

I went out with my family on a day trip yesterday!!!

Now, let me be clear, it was crazy hard.  

There were ups and downs throughout the day. 

But we drove 1 - 1 1/2 hours away, and spent the day

at Science World.  

We were gone for almost 12 hours.  

During the day I had a few panic attacks, 

and much of the time I felt pretty rough. 

A few times I felt REALLY rough. 

But I made it through, 

and I was SO glad to be able to be there for my kids. 

 

Last week, most of them went without me, 

and I felt really rough that day too.  

This day, we all went.  Together.  

And it was pleasure and torture, mixed together. 

 

By the end of the day I was so exhausted.  So toast. 

On the drive home I just lay there, eyes closed, in the van. 

I could barely get myself to bed when we got home, 

and I felt like I slept the sleep of the dead, I slept so sound. 

I actually slept for 8 hours last night.  

And my fitbit records that I had just over 2 hours of deep sleep last night!

A record, as far as I can tell.  My previous being 1 hour 40 minutes. 

Some nights, in the past I had none, or pretty close to it.  

 

Today, as if I my week wasn't busy enough, one of my kids had a friend over. 

My Mom was making applesauce, and I wanted to help her again. 

And to top it all off, I was expecting a friend for coffee in the afternoon. 

 

So, no surprise, I woke up this morning feeling like I was made of lead. 

And I struggled a lot throughout the day.  

Just barely managed to sit through supper today. 

Had to sit with my eyes closed for a few minutes.  

 

But I'm pretty excited that I was able to do all the things that I did!

Even if I'm kinda bummed that it's still so hard, 

and that I have to feel so lousy afterwards too.  

I'm discouraged by the slowness of progress, 

while being excited that I saw any progress at all!  

 

Today was crazy hard.  

But I did some things I probably couldn't have a little while ago.  

And yesterday was crazy hard too.  

But I did it.  

 

Tuesday.  

Tuesday was special. 

I felt a little closer to normal on Tuesday. 

For a little while.  

 

Here's to more Tuesdays!  

[Waterfall]

Did I mention anywhere in there, 

that I think I was feeling a bit better... 

But I think I did too much, 

and now I feel just awful again. 

 

Yoicks, do I feel rough. 

So sore.  So weak again.  

So... awful. 

I wish it wasn't so hard to describe. 

 

Lately I've had it a lot where my eyes tear up, 

but they are silent, emotionless tears. 

I get it most mornings, first thing, before I get out of bed. 

 

And lately, I am sure sad a lot. 

Sad for what's happening. 

Sad for what isn't.  

Sometimes I can't cry, even if I'm sad. 

Other times, I cry, and cry.  

 

Right now, I'm sad again. 

Perhaps, I wonder, I shouldn't have gone. 

And I wouldn't feel so awful. 

 

But I'm glad I did go.  

I just wish I could do things like that, 

and not suffer so much afterwards. 

Not have to trade off that, 

for being able to do other things. 

[Carmie]

Hi there Waterfall, 

 

Hang in there. It’s funny with sadness, isn’t it? Some days we do cry n other days we want to cry but we feel so numb that we can’t. 

 

This journey is one moment a time. I hope your sadness has lifted a bit since Friday. 

 

Wishing u a happy day☀️☀️☀️

[Waterfall]

Hmm.. 

For some reason right now, 

I'm having trouble making regular posts. 

It's not that I don't want to make them.  

I just find them hard to do right now. 

No idea why. 

 

So, after my trip last Wednesday, 

I felt pretty awful for a few days. 

If anything, when I thought I should feel

the worst on Thursday, and then a bit

better on Friday, and better yet on Saturday, 

instead I felt lousy on Thursday, and even

lousier by Saturday. 

 

Well, Saturday morning, I wanted to cry, I felt so awful. 

But somehow as the day went on, I -did- feel a bit better. 

And I managed to get my house tidied up for the Sunday. 

I was actually rather proud of what I got done on Saturday. 

 

Sunday, I wasn't sure I was going to make it to church. 

But I went, and I did okay.  Not great, but okay. 

I had a lot of cardiac weirdness in the morning.  

Stayed home in the afternoon (one of these days I'll go twice!)

 

And then someone invited me, and my family to the park. 

So I stressed for a while about whether to go or not.  

And then we went. Later than everyone else. But we went. 

And it went better than I thought.  

 

Except.  Except for the part where my big dude fell. 

And broke his arm. 

Of course, we didn't know at the time it was broken. 

But I was concerned right away. And by the time we got

home, I sent him and his dad to the hospital, 

where the x-rays confirmed my fears.  

 

In the meantime, I had to put all the others to bed by myself. 

After two trips out during the day, and the stress of being 

concerned for myself.  And then the lonely vigil, waiting here

for news, and for them to come home.  

 

Well, let's just say, we didn't all get to bed until 1, and I woke

up feeling sick at 6:30.  I did get back to sleep, which helped a

bit, but after walking around a bit, I feel pretty miserable. 

I ache all over.  Especially my shoulders.  

 

It's easy to think now, that I shouldn't have gone to the park. 

Especially since, if we hadn't gone, my son wouldn't have broken his arm. 

But I thought at the time, that it would be so good for the kids. 

To get out, and run around.  

 

And it's all happened now, so there's no going back and changing it. 

But boy, I wish I could change how awful I feel right now.  

And the fact that my back hurt yesterday afternoon, and I was a bit

nauseated, probably should have warned me that I should take it easy. 

 

But it's so hard to hold back, to be left out of things, to have the kids left out of everything. 

I'll probably miss out on the opening assembly of school tomorrow morning too. 

And it's hard to feel so lousy. Again. It feels so good to be able to do things.

 

Oh, I dream of one day having more energy and stamina back. 

I have to remind myself to be grateful for what I do get to do,

And let go of what I can not do, and what I don't get to do.

 

It's hard. 

[Waterfall]

On a total side note,

I went to read some of your other threads,

only to realize how far behind I am.

Apparently it's been much too long 

since I 'visited' some of you.

I have a lot of catch up reading to do!

 

I really hope you've all seen some better days.

[Rabe]

Hi waterfall..I have been thinking about you lots and wanted you to know!  I think its wonderful you went to the park!  Im sure the kids will certainly remember it all too....but the fun too.  My son broke his arm falling off a swing when 2...felt very bad, but he did really well and has had no ill effects from it.  Trust me...there will be more falls and sprains and all sorts of things.  My theory now, as they are all frown, is I am grateful they all survived, mainly the adolescent years! 😳🙏😉💜

[Waterfall]

Thanks @Rabe.  

I wish sometimes I could 'like' other people's posts.   

 

Life is still rough.  

Since last night, my mouth is burning. 

Feels like I actually, well... burnt it. 

By drinking something over hot, or something. 

Only I didn't. 

My tongue burns, my gums, even my throat. 

My eyes and lips feel like I've been walking through a windstorm. 

So dry, and sore.  

No amount of drinking seems to make me feel less parched. 

It just makes me go pee more.  

I've used more lip balm in the last few days, it feels like, than the rest of my life!

My fingertips hurt. More than I've had before even. 

And the soles of my feet burn and tingle right now too. 

 

On the bright side, I've been able to be a bit busier than previously. 

I did some canning and freezing with my Mom recently. 

Did some baking with my husband.  

Now, doing these things, has made me tired, cranky, and sore.  

But somehow I feel just a wee bit stronger, more solid, firm, than I have. 

Some of the time, anyway.  It comes and goes, like the wind. 

Other times I'm surprised by how weak and lousy I still feel.  

Some days, it feels like I'm starting all over again.  

[Waterfall]

Oh phooey. 

Wednesday morning I completely forgot my pill altogether. 

Now I've just forgotten to take my morning pill until now!!

This is NOT going to help my fragile little gains, 

and it can only encourage my losses.  

Oh, to eat food without it hurting. 

And I really wish my fingertips would stop hurting too. 

It would be really nice not to have so many things that hurt.  Really.  

[Rabe]

Im sorry Waterfall...I can tell you that I often have burning in my mouth and throat and chest and skin...think it is all the screaming GABA receptors. 

And the better and then awful...and yes the feeling that you are right at the start of it all...these little buggers are persistent.  BUT you did some fun things today ..the canning and freezing and baking...was time that would not have happened.  I see and hear healing and courage!  Thinking of you!💜

[Rabe]

How are you doing?  Thinking about you lots!💜

[Rosetta]

How are you?  It's been a while since you posted.

[Waterfall]

Hey @Rabe and @Rosetta

 

You are very right. 

I have not posted in a while. 

I'm not sure exactly why. 

I keep writing posts in my head, 

but they never make it to the screen. 

I always want to call it 'poster's block' or something. 

But I have no particularly good 'excuse'. 

 

I have been feeling, on the whole, a bit better that I was at one point. 

But it goes up, and down, and all around.  

Some days, or hours, or minutes, I am surprised that things are going as well as they are. 

I'll be surprised that I manage to do something, or that I make it through something. 

Or even just the absence of feeling particularly awful.  

Other times, I surprised, yet again, at how awful I still do end up feeling. 

 

At the moment it feels a bit like I was on an up for a bit, and now I've been sliding back down. 

After a while where I've been doing a little bit more, and even got out of the house a few times!...

To be back wondering how hard it will be to walk across the room, and whether or not I can

make it up and down the stairs right now, is hard. 

 

Thursday, I had a few hours where I could barely walk, I was so shaky and sick feeling. 

I've had a few episodes of intense nausea.  Dizziness comes and goes with no discernable pattern. 

Thursday, I got up and thought, I feel pretty good, but by afternoon I was barely able to function at all. 

THIS morning, I got up feeling pretty awful, but I got going and did some cleaning and tidying, and

was feeling a bit better.  And now all the sudden, I'm feeling like I can't stay on my feet again.  That 

sudden intense need to sit down, that I haven't had for some time.  

 

I found myself playing the guessing game: Symptoms come and go, and I wonder, was it something I did?  

Or didn't do?  I forgot my morning pill a couple times, and took it late a few other times.  I've been eating 

some more baking and sugary treats, that I haven't in some time.  I've been busier than I was.  I even went

to Bible Study the last two weeks!  And I even shared something about my struggles at the meeting!!  😳

 

So what it one of those things that has thrown me off again?  I was so pleased to be able to walk around, 

and not be focused on the walking, but on the task or tasks that I wanted to do. To be able to do some 

chores, and not feel like the doing of them was going to be the death of me.  To sit in my chair and enjoy

the relaxing, not feel like I was sentenced to my chair, unable to leave, surviving until the next great trial. 

 

I noticed even that at my worst, I didn't sit at the table with the family for supper.  I just couldn't. And I didn't

even consider it an option.  Then there was a phase where I argued with myself about whether I should go. 

Sometimes I made it, sometimes I didn't. Then the phase where I went, but it was really hard, and when I 

knew the time was coming, I dreaded it, and tried to think if, maybe, I felt miserable enough to opt out this 

time or not.  And then, the phase where I just always went, even if I was hard, and didn't really think about

not going.  And then I noticed one day, that I just always went, and didn't really think much about it. What

a wonderful feeling to realize that!

 

But the last little bit, I've had a few really rough meals again.  

A few times that I have almost not made it to the table again.  

A few meals where I couldn't wait for it to be over.  

And I wish there was a reason for it.  A way to know why. 

And something I could do about it. 

 

But I have a feeling that it's just a matter of waves and windows.  

Part of me hopes that is all that it is.  

 

At the end of summer, I made it out for a day with the family, 

and while at the end of the day I was completely toast, 

I went out last Saturday, and it felt like it nearly killed me to be out for just over an hour!  

Last week, I was driving the kids to and from the bus. 

The end of this week, I couldn't even manage that.  

 

Ups and downs, and so little that makes sense. 

And I am NOT liking being down again.  

I like UP, much, MUCH better.  

 

In totally other news, I think one of the reasons I haven't posted, is a seperate weakness. 

I had stopped by, a little while ago, on one and another of other's threads, 

and I found that I was further behind and out of touch than I liked.  I saw some interesting

posts going by, and tried to get back to the beginning of the thoughts behind them.  

Well, then I set myself up a goal of some back reading that I wanted to do on a few threads, 

and suddenly had myself a big monster I was to overcome to actually tackle. 

A dream I wanted, but found to mountainous to actually attempt.  

So I didn't.  I pined for it, and did nothing. 

 

It's just like another problem I find on my plate on the moment.  

Someone lent me their video program, that I really would like to go through.  

Well. I pined away for it when I didn't have it.  I wanted it so bad. 

Now that she's lent it to me, I haven't gone through it.  

The task of doing so just looms so big and intimidating.  

And now she wants it back to lend on to someone else. 

And I feel so guilty, knowing that someone else is waiting for it, 

just as eagerly and anxiously, perhaps, as I waited before. 

And now it's my fault that they aren't getting it.  

And all while I sit and do nothing with it. 

Even though I want to.

Bad me.  

 

And on I trudge. 

Kids, and school, and homework, and paperwork, 

and the house gets messy, and chaotic, 

and you try to keep it from looking like a tornado hit a street

with a toy store, a stationary story, a clothing store, a soup kitchen, and second hand shop!

 

So there.

That's my brain dump for today.  

 

I would love to hear a quick blurb from each of you on how you are doing too.  

 

[Rosetta]

Waterfall, 

 

You are describing -- so well I might add -- what I've been through myself.  I'm very happy you have had a nice, big window.  Being able to simply do what you need to do without worrying about how it will affect you or whether you will get halfway through and have to stop is so wonderful!  There will be more of these moments, hours, and days in your future.  

 

Dont worry about reading all the threads and what you have missed.  Don't set yourself any big tasks.  Give back the videos, and get them from her another time.  Just wipe away all the things you feel you "should" do.  All you "should do" is take care of yourself and be with your family.  My house looks just the same -- like a tornado hit, but I have to get well.  I can't fix the tornado look.  All I can do is take each day and do what I can to keep just enough order to get through each day -- for ONE kid.  You have 4.  Please have self compassion and forgive yourself.  When you are in a wave you are in a wave.  It's ok because you are getting better!!!

 

i know you feel crummy right now, but it is so exciting that you had a great window!!!

 

Rosetta

 

 

[Rabe]

Hi Waterfall...I do that daily...look at what I should do and dont do it..was NEVer like me.  I was always doing.  Doesnt feel good but just i all part of the wd I think.  I am SO SO happy that you are back.  Have missed you!

I sounds like you have had some very good times along the way and how wonderful for that!!!  You are right, it is so hard to have a window close...so hard. But there will be others, waterfall.  You are truly so strong and so caring and accept and dont give up.  That is your core...you will make it through all this!  Again, have missed you and am so happy you are back.

Please dont beat on yourself about the videos and the house and ll...God knows you are dealing with enough as it is!!!  💜

[mirage]

@Waterfall. Hi friend. It is looking like you are seeing improvements/healing. That is wonderful news!

 

You are doing so much more. It is so good to hear this. 

 

Isn't it amazing how symptoms sort of fade? They don't really go away, they just fade and then they come back. One day, those symptoms will fade completely and never come back. I know we are all looking forward to that day. 

 

Continued healing friend. Sending hugs. 

 

 

[Waterfall]

Thanks for stopping by @mirage

I am reminded of something you've said a few times, 

where you said that you've never had a window without symptoms. 

Well, I didn't really think of what I was having, as a window, 

because I still had plenty of symptoms.  

And, also like you've said, I didn't hardly realize it was better, 

until it got worse again.  

 

I also remember someone else... was it @Rosetta ?  
Whoever it was, she said that sometimes when it gets worse again, 

how quickly you forget the positives you just had. 

I had a terrible headache on Monday.  

And I've been struggling a lot more this week again, 

with being dizzy and weak again. 

So frustrating.

 

Yesterday, late morning, I started having a pain on my lower right side. 

It was painful mostly only to the touch.  

It worsened over the day, and I decided it was around my kidney area. 

Thankfully when I woke up this morning it was a bit better, 

and while it hasn't gone completely, it hasn't gotten worse again today either. 

 

Today I was feeling kinda weak and dizzy in the morning.  

Then I started to develop a headache. 

Not as crazy bad as Monday, but still somewhat nasty. 

Then, when I thought it was getting better, 

it got worse again, and then I had really, really bad brain fog for a while. 

My vision was kinda off, and my eyes felt dry and irritated.  

And I was crazy hot and sweating for a while then too. 

It's starting to get better again, I think. 

At least a bit.  

 

Thanks again, all of you, including @Rabe

for your support and encouragement.  

I didn't go to Bible Study this week, and it made me sad. 

But I also let go of the videos that I felt such guilt over, 

and I'm glad to be free of worrying over it right now.  

 

Due to the kidney type pain, and the headaches, I've been trying

to drink more, to see if that will help.  

I always try to do something each day, and also get plenty of rest.  

My body just can't handle being too busy right now. 

 

Today, I am grateful for the sunshine.  

It's beautiful weather, right now, for this time of year.  

 

Like I've been telling my kids for years:
 

   There are lots of reasons to be happy, 
      There are lots of reasons to be sad. 
   I'll see what I can do today, 
      To choose to be glad.  

Oh, that can be easy some days. 

And oh so hard some other days.  

Here's wishing you all, including @Carmie

a happy and sunny day.

[Waterfall]

Crud.

 

I think my current downturn,

is for being inconsistent with taking my meds.

And what do I do?

I forget to take my meds.

 

After a pretty lousy day,

I was having trouble settling to sleep last night.

Normally, right now, I try to take them

at eleven in the morning,

and eleven at night when I go to bed.

I was already pretty jittery at supper

but it wasn't until nearly one in the morning

when I'm shaking, emotional, and panicky

that I realize that I haven't taken either of them.

 

This morning, my side hurts so bad I can hardly lay on it.

And I woke up early (despite of falling asleep so late)

with the worst cortisol spike I've had in a long time.

My feet and hands are burning,

I'm weepy, and panicky.

And I keep swallowing over and over.

Which is apparently something I do when I get cortisol spikes.

 

I'd already felt like I was slipping.

If started to get small cortisol spikes

The last few days.

Well. I feel like I just caused an avalanche.

 

Because the first, 

and the worst

cortisol spikes I ever had,

we're from trying to reinstate

my citalopram last fall

and after that from anything I tried to take

I still always feel like cortisol spikes come from taking something.

 

The whole thing makes me want to stop taking this stuff so bad.

But last night definitely made me feel like not taking it

was a really bad idea.

I feel like I'm messed if I do, and messed if I don't.

 

Yesterday, and today, 

I feel like I'm back at square one.

 

I don't want to be back here again.

I want to be back on solid ground.

 

GIRL: Bummer.

(Tears)

Exit stage left.

 

 

(Okay, there weren't really tears.

I feel like crying, I want to cry, 

but the tears won't come right now.)

 

I hope I hear from someone today.

Normally, I'm hoping that you are all having a better day today, than yesterday.

Today, I really hope you're all having a better day than I am.

[Carmie]

Hi Waterfall, 

 

Im so sorry you have so many symptoms. Yes, I’m sure many of us on here have shed many tears and many of us feel like crying some days but are too numb to do so. 

 

Take care n here’s to taking a moment at a time💚

[Rabe]

Hi waterfall...I cried a lot last night...juts would not stop.  Its ok...sometimes the heart and soul just overflow.

 

I, too, have forgotten meds along the way and it made me panic for fear of not taking them as well as unsettling the already upset apple cart.  So I keep a journal, keep it in a place I see, and I write the time I took each in a slot.  I also keep a count so if I wonder if I really did or didnt take it I can count and be sure so I dont double up or miss the dose.  Dont know if that helps...it has helped me a lot.  I sometimes forget to write the time and then wonder if I took it, but can go back and the count verifies it which is settling.

 

Have missed you.  Im sorry the dosing mix ups have upended your system...but hope it will continue to settle.  Take care!💜

[Waterfall]

On 9/29/2018 at 7:41 PM, Rabe said:

Hi waterfall...I cried a lot last night...juts would not stop.

 

Oh Rabe.  I'm both glad and sorry to hear that.  

Sometimes it's so good to have a good cry. 

But it's so sad that these things exist that make us cry so.  

I wish I could changes things.  I wish they would change. 

For me.  For you.  For all of us.    

 

On 9/22/2018 at 7:19 PM, mirage said:

Isn't it amazing how symptoms sort of fade? They don't really go away, they just fade and then they come back.

 

It is.  I just wish I could skip the 'come back' part.  

Today I'm feeling a way I was hoping I'd never feel again.  

I can barely get up and walk across the room.  

I just feel so weak again.  

It's awful. 

 

And at the same time, I seem to need to drink a lot. 

And then also, to have to go to the bathroom a lot. 

So then I -have- to get up and go across the room.  

 

And as if that wasn't enough, 

I'm just in the middle of trying to toilet train my youngest. 

Oh, what a day to feel like this.  

 

As rough as things have still been, they were better than today. 

I hope today is just one rough day, and that it will not stay this way long. 

It is such a huge thing, just to stand, to walk.  

One of many things, really, that we usually take for granted.  

 

I think, today, that almost anything would be better than this weak, tingly, foggy feeling. 

But I know this is not true.  At least, for the moment, I am not panicking.  Or really dizzy. 

Things could be worse.  

Not that I haven't panicked lately.  Or been dizzy.  

But right this minute, I am not. 

 

... 

 

Yeah.  Kid had accident.  

Had to run.  😜

 

Was just talking with my husband. 

He thinks that we are all down because there's a cold style virus going around.  

He thinks we've got a mild something that's messing us all up a bit. 

 

My Mom was pretty sick with a cold a week or so ago.  

I haven't had a runny nose or cough. 

But I have had headaches, an achy chest, and dry irritated eyes.  

My chest usually feels better if I manage to clear a bunch of phlegm from my throat. 

Here's hoping that he's right.  

I was even struggling with poor appetite and even a touch of nausea this morning. 

Maybe that's related too. 

 

I was so hoping to make it back to Bible Study tomorrow... 

Probably not this week.  

 

Well.  I'm just glad that at the moment walking is a -little- easier than it was an hour, or even half an hour ago.  

Clearing my throat a lot, so maybe my chest will feel better again soon too.  

Small things. 

Oh so grateful for any improvement, no matter how small. 

[Rabe]

Thinking of you waterfall.  Yes, having 'better' days is a blessing...normal would be quite nice.  Was able to take a short walk today, toe and WD and all, and feel blessed that heart behaved.  Grateful for little things.  Good luck with potty training!💜

[Carmie]

Hi Waterfall, 

 

Just wanted to let you know I’m thinking of you and hope you’re coping as best you can. 

 

Sending hugs🤗

[Carmie]

Hi Waterfall, 

 

How have you been doing? We haven’t heard from you in a while.

 

How is that rocking chair of yours going? I’d still love to get one one of these days. There certainly is something soothing about rocking in a chair when going through withdrawals.

 

Hope you’re coping okay, sending hugs🤗

[Rosetta]

Hi, Waterfall.  I'm wondering how you are.  Hope everything is ok. -Rosetta

[Waterfall]

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?

[Rosetta]

HI Waterfall.  Up and down -- I know.  So rough.  I hope today has been better for you.  

 

I'm having a "no period" month.  So, I feel better than usual but still up and down.  Sleep has been bad for weeks with hot flashes over and over, but I seem to get enough of it anyway.  It's just no fun in the middle of the night.  Woke up anxious this morning, but I was able to get out.  Then, I had caffeinated coffee this morning by accident, and that's been unpleasant.  Otherwise, I'm more or less ok.  I'm trying to enjoy the good moments.

 

I'm thinking of you.  We all miss you.  I hope your computer issue can be fixed.

 

All my love, Rosetta

[Rabe]

Well hi waterfall!  Gosh have missed you and so wondered how you were doing!!  Im so glad you stopped back...hope you stay for awhile.  Sorry you are having a rough day...but you sound better somehow?  Maybe just your usual humor. Love you and have missed you!  Take care!💜