Waterfall: introduction

[Waterfall]

49 minutes ago, Rabe said:

But you have certainly been successful thus far, Waterfall

 

I always find it interesting when people tell me things like this. 

I don't feel successful either, Rabe. 

I feel awful.

I don't know how I keep making it through another day. 

But somehow I do. 

 

Right now, I wish I could do something about how bad my

shoulders and neck hurt. I think the pain/tension might be

what has made my balance worse right now. Just a guess. 

Either way, it hurts bad, and I wish I could do something 

about it. 

 

I did get up and walk around twice. 

I've noticed that, possibly because of my neck, that right

now I walk around looking down. If I look up, it tends to 

make me dizzy and off balance. 

 

Can't wait for something to improve. 

Trying to keep my spirits up is hard. 

[Waterfall]

For a moment. For but a moment, 

I think I felt almost normal. 

Between the headaches, 

the shoulder pain, the neck pain, 

the dizziness, the aches, the fog... 

I think, for a moment, I felt hope. 

 

And then my teeth started to hurt. 

Oh, boy, do they hurt.  

But hey, at least my shoulders don't hurt

as bad anymore.  

 

It's hard to believe that something this

crazy can actually happen.  

Craziness, I tell you.  

 

And I have to try sleep with this pain tonight!

Sheesh.

 

What will my body come up with next!? 

[Carmie]

19 minutes ago, Waterfall said:

For a moment. For but a moment, 

I think I felt almost normal. 

Between the headaches, 

the shoulder pain, the neck pain, 

the dizziness, the aches, the fog... 

I think, for a moment, I felt hope. 

 

And then my teeth started to hurt. 

Oh, boy, do they hurt.  

But hey, at least my shoulders don't hurt

as bad anymore.  

 

It's hard to believe that something this

crazy can actually happen.  

Craziness, I tell you.  

 

And I have to try sleep with this pain tonight!

Sheesh.

 

What will my body come up with next!? 

 

Hi Waterfall, 

 

I’m sorry about all your symptoms. It’s amazing how vast and different they are. I remember having tooth pain too. I did need a filling but the dentist ended up saying my nerve wasn’t exposed and my symptom was probably psychosomatic. From then on I realised that nearly all the symptoms I get are from withdrawals, they’re not psychosomatic, they are real! Withdrawals give us the weirdest symptoms.

 

They won’t hurt us in the long run as they aren’t permanent. All we have to remember is to continue to sail through them. They will come to end. 

 

Sending hugs your way Waterfall🤗

 

p.s. I saw two waterfalls on Monday😄

[mirage]

@Waterfall You are right about the symptoms. They jump around, go away and then come back. I have been holding strong for about 6 weeks. With occasional waves, not too bad, here and there. I also, tend to get better in the evenings. However, last night I met a friend for dinner and then went to her house afterwards. As the night went on, I got sicker and sicker. By the time I drove home, 10:30pm, I was really feeling bad. The dizziness was back strong and the anxiety, through the roof and the feeling in my head, so odd. It was like I was having an out of body experience. I knew where I was and what I was doing and I was able to do everything it just felt so weird. Like I wasn't even there. So hard to explain. I'm also having some issues with my eye sight being sensitive to things. I had that about a year ago and it was one of the first of my symptoms to go away. Now it is back. 

 

I fell asleep okay but woke around 5am with a huge cortisol spike with a lot of anxiety. I haven't had that bad of one in a really long time. Normally I can doze back to sleep for a couple more hours but this morning it was hard to do that because the anxiety was so strong and I still had that odd feeling. 

 

It is like many of the symptoms I had in the beginning of this journey and that have gone away, have come back. An entire year later. Does the healing of the cns cycle through and then comes all the way back around and cycles through again? And, does it continue to do that until the brain and the body are back into homeostasis? Perhaps that is why this journey takes such a long time? 

 

I did get up a smidge before 8 and walked my 4 dogs, got a few things done around the house and now the groomer is here to clean up my sweet pooches and make them smell pretty and not like dogs. lol. I have to get through a dental appt at 12:00 and grocery shopping and then the rest of the day I can rest. Have to tell myself to get through one thing at a time. When I woke up, I made it a mission to get the dogs walked and fed. I patted myself on the back and told myself to get through the morning cleaning. Got through that. Now I have to get through a shower, dentist, groceries. I can do it. One task at a time. 

 

Hang in there!

[Waterfall]

Last night tooth pain was horrible. 

I actually watched a show! A grown up show! 

A comedy... but a grown up one!

 

Had a intense and strange dream last night. 

Woke up... to an orgasm? 

Sorry, but that was really weird. 

We get to share the real stuff here, right? 

I'll tell you, that was just.. weird. 

Can this get any stranger? 

 

I've decided that the tooth pain... 

Feels in some ways, a lot like when I had braces. 

When they put in a new wire. 

 

This morning, I actually felt a bit better. 

This afternoon has been tougher again. 

The tooth pain was a bit better this morning. 

This afternoon it's getting worse. 

And my headache is returning. 

Balance was better for a while this morning, 

and this afternoon it's worse again.  

 

Trying not to think too much about my 

doctor's appointment tomorrow. 

It'll be the first time I've gone out, 

for about a month.  

The last time I went out, 

was to the doctor. 

And afterwards, I was just about 

comatose for the whole afternoon afterwards. 

[Rabe]

Hi Waterfall.  Think about you every day.  Sorry have not been around...not feeling real well, but has been worse.  Glad to hear you got out even if tired after.  Hope you sleep well!!! HUGS!!💜

[Waterfall]

11 hours ago, Rabe said:

Glad to hear you got out

 

Well, I didn't get out -yet-, Rabe. I'm supposed to go out, -today-. 

And I'm not exactly looking forward to it. 

It will probably go better than I fear. 

But not as good as I hope it will.  

Time for a doctor's appointment!

I wonder if he will have read any of the stuff I gave him last time... 

 

Intense dream/thoughts again last night. 

Teeth pain is getting better, I think. 

[mirage]

@Waterfall Hoping your dr appt goes well today!

[Waterfall]

Well. 

The appointment went well enough. 

He is still patient and tolerant. 

He still thinks there is nothing physically wrong with me. 

Or at least, other than with my brain... 

And he still encourages me strongly, to take more drugs. 

He won't force it, or push it too much, but he'd prefer if I took something. 

Sigh. 

 

I actually did almost better than I could have hoped. 

Other than having fairly strong vision disturbances on the trip, I did very well. 

I felt pretty stable, and calm, and everything.  

I even came home, and carried some groceries down from the car. 

Stood and talked to my Dad for a while.  

Sat and ate lunch.  

 

And then 2/3 of the way through lunch, my teeth started to hurt again. 

They'd been feeling so much better too.  

And then I got up to bring my dishes away, and I wasn't feeling so great anymore. 

My sister-in-law was watching all my kids for the appt, 

and she said I could leave them at her house to get some housework done, 

so I really felt I had to get something done!

So I loaded and ran the dishwasher, 

which was way tougher than it should be. 

I wanted nothing more than to sit down.

And then, I still went and wiped down the bathroom. 

Shortly before I was done, I got a nasty wave of nausea and dizziness. 

But despite how I felt, I refused to quit so close to being done!

So I finished. 

And I've been sitting in my chair since. 

Waves of anxiety rise and fall. 

My fingers feel tight and thick. Sore, and tingly. 

My chest/ribs hurt. 

My abdomen is tight/tense. 

I have a headache. 

Kinda jittery.  

 

The frustrating thing about feeling better, sometimes, 

is that you want to get up and running!

Taking is slow, is hard.  

 

Well. I'm slowed down now.  

Sigh. 

 

Trying to take it easy until the kids come home. 

My sister-in-law is walking them over from down the hill.  

Very nice of her.  

 

Hopefully I feel better again after sitting a bit. 

This happens every time I exert myself. 

I wonder... am I supposed to do less? 

Or should I push more?  

Should I push through more often when I feel bad? 

Or should I listen to my body, and slow down more? 

So frustrating.  

 

Lots of weird habits right now.

Picking the skin on my arms. 

Rubbing my nose. 

Touching my face.  

Also rubbing my eyes. 

 

Ooh, I hope my teeth stop hurting again soon. 

I was SO glad that had faded some... 

[Rosetta]

I'm glad your doctor is respecting your wishes.  That is huge.  I think you had better take it easy tomorrow.

[Rabe]

Im sorry Waterfall...mind not working well. Grateful the appt went well and that you had some good moments today.  Do you have a ball to squeeze or something.  When anxious I pick as well and run skin...dont really realize doing it.  But got a spongy thing that sometimes helps if squeeze it...keeps hands busy.  Take care! 💜

[Waterfall]

4 hours ago, Rosetta said:

I think you had better take it easy tomorrow.

 

I think you are right, Rosetta. 

 

I even pushed through after I got home, 

and perhaps I shouldn't have so much. 

After supper (which I ate in my chair)

I almost fell off the toilet, I was so dizzy. 

It's kinda funny... and kinda not.  

 

This afternoon my headache and tooth

pain were so bad, I just sat in my chair, 

closed my eyes, and let the kids watch tv. 

 

I was so thrilled that the visit this morning 

went so well.  And even that I got some 

things done after that.  I am so bummed

to be feeling so rough afterwards.  

I hope I don't feel too horrible tomorrow. 

And I hope I don't stay feeling this low for

too long. 

 

Right now anxiety is high. Tooth pain is a 

bit better again. At the moment,  Who knows

how long it will last. Still have a headache. 

Haven't tried to stand, so no idea on the 

dizziness yet, but I'm dreading getting up

to go to bed.  

So glad that I managed to wash my bed 

today! Not so glad that I still have to make

it to sleep in it... 

And lately I've had it in bed that it feels

like my legs are moving, when they aren't. 

It's a very annoying feeling to try fall asleep 

to.  And knowing I might wake up to another

nightmare or other strange and intense 

dream is not something I look forward to 

either. I'd almost prefer an ordinary cortisol

spike.  Though, really... can't I just... wake up?

Just, plain... wake up? 

 

Sigh. 

[Waterfall]

2 hours ago, Rabe said:

Take care! 💜

 

Thanks, Rabe.  

I'm sorry to hear that you're still struggling.  

I only wish I could help.  

 

Interesting idea... a stress ball. 

I had one around just before we moved. 

Not sure where I put it.   

I realized as I was re-reading your post, 

that I was rubbing my fingers together, 

without realizing it.  

I've always been someone who fidgets. 

Never has my own fidgeting bothered

me so much.  

The strangest things bother me right now.

The other day, I put on my favourite sweater,

that I wear all the time (but hadn't for a few 

days), and I almost couldn't stand it. I almost

took it right back off. 

 

I hope tomorrow is a better day for all of us. 

Yay for the ones who are in a window!!  

Strength to the ones who aren't.  

[mirage]

@Waterfall happy to hear your appointment went well and that you were able to get a few things done. That is great! 

 

I'm not sure what the right balance of, too much, is. I always get a wave when I do too much but at the same time, it keeps me busy and becomes easier each time I do it. I also think doing things gives the brain a sense of accomplishment and that is healing. 

 

You are doing great. 

[Rosetta]

A big hug, Waterfall.  -Rosetta

[Rabe]

Hi Waterfall...I often get that feeling in my legs as well...and then I DO move them about when the feeling comes and sometimes it helps...

Hope today is better!!! 💜

[Waterfall]

Oy.  

I knew today would be rough, 

after yesterday. 

But it's one thing to know it, 

quite another thing to live it. 

I hope tomorrow will be better.  

 

Right now I am hoping, as my 

sole accomplishment for the day

to be able to sit at the table for 

supper, and make my husband 

happy. 

I'm getting sweaty just thinking

about it.  So frustrating.  

 

Vision comes and goes. 

My legs feel like rocks. Or like noodles. 

Very heavy noodles.  

Dizzy. Weak. Heart pounds. 

Teeth hurt. 

Can't wait for some relief. 

 

Aaaand it's time to pee again. 

It seems like my day is measured by

when it's time to get up and pee again. 

And I feel like it sounds dumb to say that. 

But that's how life feels right now. 

Waste time.  Until it's time to eat. Or pee.  

Wheee.  

What fun.  

 

Sigh.  

 

[Rabe]

Hi Waterfall...you said you have had lab work and it was all normal?

[Waterfall]

@Rabe Yes.  Why do you ask? 

[Waterfall]

Having a major bummer moment. 

Just.  So tired of this nonsense.

My finger tips hurt. 

My feet feel thick. 

My head hurts. 

My tears flow. 

I can't think well. 

I can't see super clearly. 

I feel anxious. Scared.  

Frustrated. 

Tired. 

My mouth feels like it has a headache. 

My neck hurts. 

My back hurts. 

I'm tingly all over. 

Hot. 

 

Oh, last night my intense dream was about walking, talking lego men. 

Like the ones in one of the shows my kids watched months ago.  

I kinda hope I don't remember any dreams tonight. 

But if I do, I hope they are on the plesant side. 

Instead of about scary or horrible things. 

 

I hope I sleep well tonight. 

And feel better tomorrow. 

Seems like way to many people around me, 

are sick, or dying, or miserable in some way. 

 

It also seems like lots of people around me are 

living perfectly normal lives, and I'm jealous. 

I want to be normal again.  

Today was awful. 

I didn't do anything. 

Well... except sit with the family at supper. 

And watch our current nightly kids show. 

Otherwise I sat here all day. 

Ate. Drank. And went to the bathroom. 

That's pretty much it. 

And I felt awful. 

 

I feel awful right now.  

I'm tired of feeling awful. 

When will things get better? 

Will they ever?  

 

Sometimes I really wonder. 

Sometimes, I'm downright terrified. 

Sometimes, I'm more hopeful. 

Now, isn't one of the more hopeful times. 

I have to keep reminding myself, 

that the symptoms just don't match anything else. 

And the stories show, other people just like me, 

and they get better. 

 

I just wish I felt tougher. 

I wish I could do more. 

I wish this wasn't so crazy hard. 

[Waterfall]

I just wish I could shake this pattern of despair and discouragement, 

and be more positive and hopeful, like mirage. 

 

I want to shake this feeling that things just keep getting worse. 

I want to see some encouraging signs of improvement. 

 

Oh please. 

Let it, let up, soon.  

 

A little bit ago, my eyes were burning. 

My anxiety was high. 

 

Eyes started leaking.  

Talked with my husband. 

And I cried.  

 

Eyes are burning again all of the sudden. 

Neck is burning... haven't had that in a bit. 

Feel very hot at the moment. 

Trying to get to bed.  

 

To sleep. Perchance to dream... (oh, I hope not!)

[Carmie]

Hi Waterfall, 

 

I see you’ve been struggling a lot lately. I’m so very sorry, this is a hard ride, isn’t it? I’m sorry you’re in so much pain. I wish I could take the pain away but all we can really do is ride it out moment by moment. 

 

We can do this Waterfall, one step at a time, one moment at a time. We just have to keep distracting ourselves when going through waves, no matter how hard it is. We don’t really have a choice, but we will get there eventually.

 

Thinking of you.

 

Keep on fighting my fellow warrior💚💚💚

[Rosetta]

I'm so sorry, Waterfall.  All I can offer are virtual hugs.  So ... (((((Waterfall)))))

[Waterfall]

@Rosetta Thanks for the hugs.  ❤️❤️❤️

@Carmie Thanks for stopping by and being encouraging, fellow warrior.  💚💚💚

 

@Rabe They tested my urine. They tested my electrolytes, my hemoglobin, my kidney function, my liver function, 

and another thing or two that I can't remember.  

My family reminded me again yesterday, that I look perfectly fine. Even when I feel like I can't stand, or think, or 

stop panicking, or whatever is the case, they think that I look perfectly healthy, composed, and even energetic!

 

I'm feeling a -bit- better now. But my, I get tired of being so discouraged. After thinking I did so well on Friday 

morning, I was completely out of commission for the rest of Friday, and all of Saturday. I was so proud of myself

yesterday morning, because I got up and actually had my weekly shower!  I even stayed awake through the whole

morning worship service (which I watch online), and I managed to sit with the family for lunch! But I did fall asleep

during the afternoon service, and I was not able to sit with the family for supper. I was just too dizzy. 

 

Then my parents asked us up to play cards. I was worried about it, because I couldn't even sit at the table for 

supper, because I was too dizzy. But I said yes anyway, because I so badly wanted to. Well, I'll tell you, it was a

nightmare. I did it. I played. And I even enjoyed some aspects of it. But I was panicky, I was tense. Several times

I couldn't help but to shake out my arms. I was sweating. By the end my arm was cramping just from holding my

cards. Never mind the constant dizzy feeling. The tingling. The heaviness, I seriously can hardly believe that I

managed to stay. I felt so awful.

 

And part of what I hate the most, is that describing all the individual symptoms, doesn't come close to describing

how awful it felt. By the time I made it back downstairs to my chair, I had a terribly time settling to go to sleep. And

I felt then, and this morning, like ever muscle in my body is tense and sore. 

 

Actually... describing it, and it being over, both seem to help make it feel like maybe, just maybe, it's not quite so bad. 

I still feel too sore and weak to do anything this morning. But... maybe, just maybe, can I feel hopeful?  I was so afraid

that pushing through that yesterday, was just going to make today turn out even worse. But maybe, I can survive this.

I like that thought. Fleeting though it is.  

 

We'll see what the rest of today holds.  I hope I feel better.  

[mirage]

@Waterfall It sounds like you are making progress. I'm sure it doesn't feel like it but I see it. This healing is so very slow that we can't see it ourselves. I, for one, have always been able to toughing out any illness but that was easy because with normal sickness, you know it won't last for long and you can feel yourself getting better and better each and every day. With this journey, the improvements are so microscopic that we can't see them until months later and the improvement we see is the slightest and usually with one symptom. We have so many things that have to heal. 

 

It is good that you went and played cards. No matter how bad it feels and how bad the symptoms are, we have to still live and by doing that you are telling your brain and your body, that you are okay, despite the feelings. I think in the long run, that is part of what helps us heal. It also helps keep your mind off of things and makes your brain think about something else even though the symptoms are still there. Also, it gives you a feeling of accomplishment that you made it through. Another good thing for the brain. 

 

Keep going. Sending hugs!

[Waterfall]

3 minutes ago, mirage said:

It sounds like you are making progress. I'm sure it doesn't feel like it but I see it. This healing is so very slow that we can't see it ourselves

 

Well, I'm glad that you see it, Mirage. I can't see it, but I choose to believe you. 

 

I just got up and walked around, and it really feels to me, like I just keep feeling worse and worse. Last night 

feels like one of the hardest things I've ever endured. And it feels like pushing myself just keeps making things

worse. I was thinking just this morning, that I must be doing something wrong, to keep feeling worse like this. 

That I must be missing something, that would help make me feel better.  And that if I don't find it, if I don't 

change something, I'm just going to keep going downhill.  

 

So it means a lot to me to hear you say that you see something improving. Even if I don't see it. I believe it. 

 

I need to believe that it will get better.  It's just so hard to be patient.  

[Waterfall]

Great.  Suddenly super nauseated. 

Sitting with a bucket and burping up a storm.

Hope this passes soon. 

Sigh. 

[mirage]

@Waterfall I am finding that this journey is ULTRA slow! I say baby steps but is it actually, micro, micro baby steps. I also think there are so many parts that have to heal that we don't actually notice any improvements for a very, very long time. I have noticed several of my smallest, least troublesome symptoms, were the first to go. I had pretty bad muscle twitches and my arms and hands would shake. I couldn't even smile because the muscles of my face could not hold my cheeks. My entire body would just tremble non stop. I was so nauseas. Could barely sip water and my weight dropped to 104lbs. I could not look out of my peripheral vision. Lights and sounds were very intense and I was so scared of everything I couldn't watch any tv or movies. Even the ones I loved before this all began. All of those symptoms are gone. 

 

What is left, the most difficult symptoms. Anxiety, dizziness, can't sleep well and there are many times I feel like i'm having an out of body experience. I know what i'm doing and what is happening but I feel like i'm standing by and watching it. All of my symptoms now are head issues. I no longer have any body or pain complications. 

 

So I guess, all in all, a lot has improved in a year and i'm looking forward to these big symptoms to get easier. I learned pretty early on, that this is not a quick fix and you have to learn to accept it all and just focus on getting through each day and know that every day is another day of healing. 

[Waterfall]

Whew.  Bit better now.  Still nauseated, but not rocking with a bucket and my eyes closed. 

Still fuzzy headed, shaky/shaking, sore, cranky, crampy, etc, etc... 

I keep going through my symptoms, thinking that if I find the one I've missed mentioning, 

or if I could find a way to describe the indescribable feelings, 

then they would clearly point to whatever it is that I'm missing. 

And I could fix it, or change it, and finally feel better.  

 

Like my Mom said yesterday, I need to stop thinking about it all the time. 

But it's hard to do.  The symptoms demand your attention.  Constantly.  

Look at me!  Look at me!  They insist. 

I don't want to. 

I want to get on with life. 

But it's hard to do. 

When you can't walk more than a few feet.

Dizzy, weak, and shaking. 

Nauseated. Headachy. 

Teary. Miserable.  

 

Stop the world, I want to get off!!  

[Waterfall]

@mirage

 

Thanks.  I needed that reminder.  

I was telling myself this morning, when I felt so nauseated, 

that at least I didn't have as bad as you did!  

I think sometimes I should feel luckier!  

It's just so hard.  

And I'm learning just how impatient I am. 

I think it would be easier, if life wasn't pushing so hard. 

Every day, my kids still need me. 

My husband is still there. 

My parents are pushing. 

They think this is 'ordinary' depression and anxiety. 

So I just need to push through, and it'll go away.  Soon. 

Oh, I wish that were true.  

 

I'm sorry. 

I feel so needy.  

I wish it wasn't like this.  

I wish that -I- wasn't like this.  

Thanks for your patient encouragement, Mirage. 

[mirage]

@Waterfall You are so right about these symptoms needing attention. It is very hard to put them aside and keep going. These aren't like a sore throat or a cough or a clogged or runny nose or a pulled muscle. These are many symptoms and all at once and they are big. Do what you can do and keep moving forward. 

[Waterfall]

@mirage

 

Thank you for taking time to listen.

And to respond.

[mirage]

@Waterfall Happy to listen and want you to find hope. Sending hugs.

[Waterfall]

Right now, it feels like it would be easy to feel hopeful, 

if only I could see some tangible improvement. 

I'm sure, that if I had what I wanted,

I'd find some other reason to be discouraged.  

But right now, it feels like it would sure be easier, 

if I just had some proof that it would get better, 

and not only get worse.  

 

There are success stories.  Like Pug's.  

There are also others.  Like one I found today. 

They are more discouraging.  

 

I feel like staying positive is one of the most important things. 

And it seems like one of the most impossible.  

 

If I'm sure and hopeful one minute, I could be in complete despair the next. 

Coming back up again, seems harder than slipping down again.  

 

Things just seem to keep getting harder and harder. 

I wish there was a more tangible way to measure, that just my feelings. 

I'm sure that while they seem solid to me, that they are more fickle than I think. 

 

I was going to write a list of things I'm still thankful for. 

Maybe after supper... 

Going to try sit with the family.  

We'll see how it goes!

[mirage]

@Waterfall Write that list of positives. Keep a journal and at the end of the day, list positives, no matter how small you think they are. 

[Rabe]

Thinking of you Waterfall.  Asked re labs just to be sure all was stable.  Sleep well!!  💜