Waterfall: introduction

[Waterfall]

Rabe.  You're the best.  Thanks for cheering me up so much.  

Yes, you are right, I have a tendency to try hard to be perfect.  

I want to chat more, but I have a little girl and her friend to entertain for a little bit.  

It's hard to manage that from a chair.  😜 (Totally think that is my favourite smiley...)

But I'm glad that, even if it's from my chair, that I'm doing not so bad at it.  

[Rabe]

Wanted to share that the 4/7/8 breathing has really worked well for me...onec in AM and once PM..consistent.  I have noticed some improvement seems...thot u could try it cause can do in chair in bed...however. ♥️

[Altostrata]

On 5/28/2018 at 6:51 PM, Altostrata said:

Have you gotten anywhere with fish oil and magnesium? If your digestion is off, mag glycinate or topical magnesium would be the way to go.

 

[Waterfall]

3 hours ago, Altostrata said:

Have you gotten anywhere with fish oil and magnesium? If your digestion is off, mag glycinate or topical magnesium would be the way to go.

 

At one point I tried taking a small dose of magnesium. 

I felt very nauseated at that time.  

I suppose I should try again at some point, and 

see if the nausea was caused by the magnesium, 

or if the correlation was a mere coincidence.  

 

I have not tried fish oil, or topical magnesium.  

Do you know the best way to get them?  

Are there different kinds of fish oil?  

Are some more beneficial?  Easier to tolerate? 

Is fish oil a lot different than just eating fish? 

And stupid question here... does it always have to give you fish burps hours after? 

I had some fish oil years ago.  I hated that my burps always tasted of fish. 

And since I burp a lot right now, that could be really unpleasant.  

Not that it would stop me from taking it... it just would be nice to avoid if I could!

[Waterfall]

Monday, May 28

7:00

Woke up

Fitbit says I got 7 hours and 21 minutes of sleep. 

I also got a lot of REM and deep sleep 

Okay, to be specific, 1 hour 38 minutes REM. 

1 hour 18 minute of deep sleep.  

7:30

Got up

Took pill

Ate a slice of toast with egg for breakfast (around... 8:30?)

Unloaded and loaded the dishwasher and made three beds.

Took a shower.

Finished that at 10:30.

11:00

Ate a few beans

and left for doctor.

12:15

Went for blood test

12:45

Sat in my chair for the rest of the day.

Spent the next couple hours working through

a couple small pieces of yellow pepper,

a bowl of kale salad with poppyseed dressing

and a second slice of toast with egg.

Finished around 2:00-2:30.

Dozed off and on through that time and the rest of the afternoon.

Had a hard time thinking or seeing straight.

Not typical. If I doze, I usually only do it once in a day.

3:00

Shoulder heat/pain hit

6:00

Terrible headache/neck pain hit.

Was really bad for about an hour.

Continued at a lesser level

7:00

Ate a few small pieces of yellow pepper

And a small bowl of yogurt.

9:00-11:00

Finally ate my hamburger for supper

11:00

Went to the bathroom, took my pill.

Stumbled off to bed.

Muscle in right side of my bum was cramping/seizing as I walked.

And my knee hurt/shook too.

 

Slept from 11:00

My fitbit says I slept for 7 hours and 7 minutes.  

My fitbit says I got lots of REM, but very little deep sleep.

Specifically 1 hour 50 minutes of REM and only 18 minutes deep sleep.  

[Waterfall]

K.  Sorry if this is too long.  Just trying to do my best.  

 

Tuesday, May 29

6:00

Woke up

Cortisol spike – rating 5.5 prickly burning

Heart pounding (Fitbit says heartrate is 54)

Nausea

7:00

Tense warmth in forearms,

then shoulders.

Pain in lower back/tailbone area – rating 7

Heartburn – rating 7

Did some belly breathing

7:30

Got up out of bed

Dressed

Went to bathroom

Took Clonazepam 0.25mg of 0.80mg pill containing 0.25mg Clonazepam.

Shaky

Mild headache – rating 1.75

Shoulder burning – rating 2

Chest pain plus warmth

Sat in my chair

7:50

Ate a few bites of yogurt

Having gas

Chest pain

Burping

8:15

Still nauseated.

Heartburn slightly improved

Brief warmth of left ear

Tingling in nose and lips

Shoulders tense – rating 3

Shoulders warmth – rating 1.5

Chest pain

Burping

8:25

Ate a few more bites of yogurt

Having more gas

Brief warmth of right ear

Warmth on crown and back of head

Chest pain

Belly breathing

Burping

8:45

Waves of tingles in my left legStill shaky and weak

Pain in shoulders

8:50

Ate half a banana

Picked my nose.

Okay, so you probably didn’t want to know that.

But hey, would it hurt you to smile?

Probably not.

9:15

Mid back pain.

Pain in my ears.

Vision bothering me more than usual

Chest pain flaring up again after a brief lull for a while

A bunch more burping

9:30

Brain zap? Blip?

Don’t usually get those.

Caused some anxiety.

Waves of tingles.

Shooting pains in fingers

9:45

Burping

Lower legs heavy.

Went to bathroom

Actually went... well, #2!

Sorry if that is TMI, but I’ve been a bit constipated recently.

Came in small chunks.

Burping lots more.

Sudden increase in nausea while in the bathroom.

Short of breath.

Vision bothering me.

Shoulder pain

Anxiety higher right now

Trying to remain calm.

And actually eat my breakfast of an egg on toast.

Usually I eat much earlier.

Usually start something by 8:00.

I also usually eat a lot of protein,

but last night and this morning, I’ve noticed

an increase in anxiety when trying to eat substatial foods

like eggs and hamburgers.

Fruit, veggies, and yogurt go in more easily... but only somewhat.

9:55

Eating my toast and egg.

10:00

Ate half so far.

Wave of nausea,

increase in chest pain.

10:10

Got up to change the kids show.

It’s 10 steps each way, but it’s hard.

I find it easier to stand bent nearly 90 degrees at the waist.

Thought I felt better getting up this time,

but now my anxiety is high.

Burping a lot.

Scalp all tingly.

Heart pounding. (Fitbit says heartrate is 90)

Shoulder pain

10:20

Anxiety was subsiding,

high anxiety and shoulder pain right now.

Bad vision.

Could be triggered by media.

Was trying to do some web surfing to distract.

10:30

Anxiety – pains shooting through hands/fingers

Neck burning

Nausea

10:40

Ate other half of my toast

11:00

Ate 5 baby carrots

Jumping at every little thing.

11:20

Legs hurt

Chest hurts less.

Less anxiety right now. For now.

Nose is tingling.

11:40

Started eating an orange pepper

12:00

Did better for a bit.

Helped my son with a lego project he’s building.

Was experiencing pain, but anxiety was manageable.

Not done the pepper yet.

12:45

Got up from my chair.

Changed a diaper.

Collected and sorted my laundry.

And went to the bathroom.

Was very shaky and shoulders and legs hurt.

Brain foggy.

Frustrated that just a short walk around my house is this hard.

1:05

Sitting down again,

and anxiety is very high.

Almost done the pepper.

Noticing right now that chest pain isn’t as bad. For the moment.

Not even that nauseated, but still having trouble getting any food down.

Burping

1:15

Sat and read a book with my son.

Feeling a quite a bit more calm.

Low anxiety.

1:50

Suddenly noticed an increase in heat and pain in my shoulders.

And a sudden increase in trouble with my vision.

Was otherwise feeling a bit better for a little while.

Oh! And I finally finished my pepper a little while ago.

Not sure when. After the book. Before now.

Funny that this should happen now.

I was reading online, and I read a few things in the last half hour

or so, that were definitely anxiety inducing, but I weathered them

pretty good. Why a sudden rise in symptoms now?

Strangely, I suddenly feel kinda hungry, for the first time all day.

It’s now almost 2:00. Pain and anxiety have already improved somewhat again.

Woah, nevermind. Wave of heat again.

Eating a second egg with toast now.

2:25

Finished egg and toast.

Anxiety definitely still quite high.

Over seemingly nothing.

Vision a bit better.

Shoulders are bad.

Currently eating some raw veggies:

carrots, sugar snap peas, broccoli, and celery.

3:05

Anxiety still high.

For no apparent reason.

Muscle tension.

Sore chest and shoulder blade on left.

Significantly sore neck and slight headache.

Not as bad as yesterday, so far.

If this is a becoming a pattern, I think it’s a new one.

Like, starting in the last few days.

This whole day isn’t like my days have usually gone.

3:15

Anxiety is a bit better.

Neck is worse.

3:45

Anxiety relatively low.

Neck still getting worse.

Nose/face tingilng twitching.

4:15

Medium headache.

Lower legs hurt and feel cold.

Lower back hurts.

Anxiety rising again.

Vision bothering me more again.

Been munching veggies all afternoon.

Slowly.

5:15

Anxiety very high right now.

Muscle tension.

Mild headache.

Legs and.. butt muscles? Very sore.

Arm muscles as well.

Jittery and a bit shaky.

Apparently I have been rocking a lot.

I’ve barely left my chair all day, and yet my fitbit says I have over 10,000 steps!

I really need to leave my chair to switch the laundry I started before lunch, but

I’m afraid to try stand. The last excursion from my chair was miserable.

Oh, and I should probably go to the bathroom again.

5:20

Ate some more peppers

5:40

Ate some Tostitos chips with hummus

6:00

Got up to go to the bathroom

Anxiety was very high.

Dissipated fairly quickly after sitting down.

But muscles in the backs of my legs felt like little fireworks were popping in them

Or like they were gurlging, like your stomach does. Little fluttery feelings.

My feet felt heavy and tingly.

And my lips tingled again.

For a little while my neck hurt very badly.

6:50

Ate a hamburger.

My anxiety spiked in the last hour over silly things,

like buttering my bun, or the buns for the kids.

(We had supper around my chair tonight. )

Feeling a little bit better otherwise.

Was much easier to eat tonight than yesterday.

7:15

My husband really wanted me to sit at the table with the family for a few minutes.

I did. But I was quite dizzy, and my headache got significantly worse.

I felt like my torso was moving in a very weird way.

Never felt anything like it before.

Started feeling naseated.

Walking back to and sitting in my chair, my feet are numb/tingling very badly.

Now it’s 7:55 and those symptoms are all significantly improved.

Wondering if some of my dizziness is because I spend so much time rocking...

8:00

Oh, the other thing that started happening at the table was that blip feeling that

reminds me of brain zaps. I can’t say that I’ve ever had many of them before.

But in the last hour I’ve had several. Including a couple just now.

9:00

My parents came down,

and I tried for an hour to explain to them about antidepressant withdrawal.

It involved a lot of crying.

Legs hurt really badly.

Brief stabbing pain in my left shoulder blade. 

10:20

Trying to settle down and go to bed now.

10:30

Ate a sausage.  

[Carmie]

Wow Waterfall, 

 

You’re quite a record keeper!

 

I’m sorry you have so many symptoms at the moment. 

 

One of these days you will go back on these logs n realise all these symptoms no longer exist. 

 

Im really glad you have your chair, it’s nice to have a little comfort zone. I really would love one of those comfy rocking chairs, great for you’re in a wave. 

 

Thinking of you n sending hugs🤗🤗🤗

[Waterfall]

Thanks, @Carmie

I hope I managed to make you smile in the middle.  😏

 

Oh, boy, do I ever look forward to one of those days, Carmie.  

I hope we all get to see a day like that... when we look back and go, 'Wow, all that? Gone?!'  

 

I don't know why, and I almost don't care... but for the moment, I feel more cheerful.  

I wish this feeling would stay.  Maybe it's the crying I did yesterday?  Maybe it was taking it easy a few days?  

Oh, I guess I care a lot.  I really wish I knew how I could feel like this all the time. 

Usually by the time I take notice of such a feeling, I can already feel it slipping away.  

 

I wish I could buy you a chair like mine, Carmie.  ❤️

Thanks for the hugs, Carmie. Right back at ya!  

[Carmie]

5 hours ago, Waterfall said:

Thanks, @Carmie

I hope I managed to make you smile in the middle.  😏

 

Oh, boy, do I ever look forward to one of those days, Carmie.  

I hope we all get to see a day like that... when we look back and go, 'Wow, all that? Gone?!'  

 

I don't know why, and I almost don't care... but for the moment, I feel more cheerful.  

I wish this feeling would stay.  Maybe it's the crying I did yesterday?  Maybe it was taking it easy a few days?  

Oh, I guess I care a lot.  I really wish I knew how I could feel like this all the time. 

Usually by the time I take notice of such a feeling, I can already feel it slipping away.  

 

I wish I could buy you a chair like mine, Carmie.  ❤️

Thanks for the hugs, Carmie. Right back at ya!  

 

Hey Waterfall, 

 

Glad to hear you’re feeling more cheerful. Yep, would be lovely if the feeling would stay but we can only live in the moment, make the most of it while you’re feeling cheerful.

 

Do something you enjoy or try something new, paint, write, do crafts, play board games, get on a bus and go somewhere you’ve never been, go out in nature, plan a morning tea or lunch so that when you’re up to it you can do, go to the movies or to an art gallery or the museum, garden, write people cards or letters, make a new recipe, take photos etc etc

 

The list is endless. We need to collect happy memories because when we’re in waves we have fun things to look back on n we look forward to our next window where we can add to the memories again. 

 

Wow, that Fitbit of yours certainly shows you do a lot even when you’re living in your chair😁.

 

One day at a time my fellow warrior 💚💚💚

 

 

[Waterfall]

Thanks @Carmie

The sort of cheerful feeling didn't last long. 

But I'm glad that today isn't quite so hard as yesterday.  

I really look forward to being able to walk around more freely again. 

But I'll take today as a start.  

Thanks for sharing some good thoughts. 

 

I may have stayed mostly in my chair, 

but I still played a fun game with my little dude for quite a while this afternoon. 

 

He told me a marker was a magic wand. 

And he first kept putting me magically to sleep. 

So then I started turning him into all manner of things. 

I don't remember them all anymore.  

But he was a worm, a dog, a cow, a plane, a grasshopper, 

a train, a fish, a star, a kite, a cloud, a seed (that grew into a 

flower), a sunbeam, a farmer, a camper, a cat, a fly, a horse, 

a butterfly, a shark, a whale, a kangaroo, a plane, a bird, and

who knows what else that I can't remember now.  

 

But as much as part of me was going, kid, just leave me 

alone already... it was fun.  And it was good for him.  And it

was probably good for me too.  😏

Good memories.  

[Rabe]

Hi Waterfall...You ARE a good record keeper!  And love that humor of yours...good to have that intact in the midst of all you are dealing

with...I'm sorry..but happy that you are still finding magic moments (those wands can do awesome things!) inspite of so much.  Im happy for you and it speaks to your tenacity and courage.  Been thinking of you everyday throughout the day....wish you could post a picture of your chair....its like the chair has become a member of SA too!   Love ad hugs!!!

[Waterfall]

Thanks @Rabe

That was a wonderful and encouraging post.  ❤️

I'm so glad that you are also sounding more positive lately.  

[Waterfall]

Forgot to mention yesterday

Around 7:30 drank a small glass of prune juice

in an attempt to help with constipation.

 

Also, in the morning drank roughly 8 oz.

Afternoon drank around 12 oz

Total all day around 28 oz of water.

(So that doesn’t include a small cup of fruit juice with veggies I drank, or the prune juice)

 

11:00

Mouth dry

Got ready for bed.

Took pill.

11:30

Fell asleep.

Fitbit says I slept 6 hours 47 minutes

51 minutes REM and 15 minutes deep sleep.

 

Wednesday, May 30, 2018

 

5:00

Woke up

Intense dream/borderline nightmare.

I was visiting a mental patient at a facility somewhere...

Mild cortisol spike – rating 1? Maybe 2?

Heart pounding.

Stomach rumbling mightily.

Went back to sleep.

 

7:00

Woke up again.

Much worse cortisol spike – rating 6

Heart pounding – heart rate 64

Mouth dry.

 

7:30

Got out of bed

Dressed

Went to bathroom

Chest feels very tight

Short of breath

Vision is poor

Hard to walk around, but a little bit easier than yesterday

Worried because I am out of pills, so I can’t take one until my husband makes more.

 

7:45

Sitting down it feels like my chest is trembling/quivering.

Feel actually... like I’m hungry. Stomach growling.

But I’m still having trouble even taking a bite of the yogurt I grabbed.

 

8:00am

Trying to eat my little bowl of yogurt. Take one or two bites.

 

8:20am

Finally ate my yogurt.

Mild headache.

Chest aches.

No significant anxiety yet today.

Still hard to sit still (fitbit says I rocked hard yesterday, to the tune of 12,500 steps!)

 

8:30am

My husband made a new batch of pills! Took one right away!

 

8:40am

Tingling runs through my... bum? Weird.

Then my lower left leg.

Shoulders are hurting right now, and maybe feeling a bit warm.

 

8:45am

Left arm aches now.

Feels heavy and sore.

Minus the heavy, the way my arm feels now, it reminds me of growing pains many years ago.

 

8:50am

Developing heartburn now.

Probably because I need to eat, and I don’t feel like it.

Frustrating.

 

9:00am

Never used to matter if I ate my breakfast an hour earlier or later.

The last few years it sure has.

My husband is making me an egg,

but it feels like my stomach acid is about to eat me inside out!

I suppose that’s a pleasant change from the usual,

where my stomach either tells me nothing, or it feels nauseated,

and instead I grow increasingly unsteady and unable to think

and anxious and awful...

I suppose this probably shouldn’t be part of my log, persay, but

I just wanted to note that I’ve noticed blood sugar type issues that

come and go in intensity for a few years now, but my blood sugar

tests, always show up normal.

 

9:05am

Eggs arrived!

My husband is wonderful...

Sshh, quiet now, I’m eating!

 

9:25am

I think I finished my toast and egg in record time!

(Okay, more like normal time, but it’s been a while since I’ve been normal.

If I ever was!)

I might even feel like eating the second one before lunch!

 

10:00am

Thinking, just sitting, or even walking, are a tiny bit easier than yesterday.

I’m still not up for very much.

Watching a short innocuous video about live statues, I felt minor triggering of anxiety.

 

10:15am

Tingling legs, lips, and scalp.

Neck is hurting.

Sitting with my son and I suddenly feel like taking a nap.

 

12:00pm

Well, that was some nap!

Just sat here in my chair, my son watchin cartoons, closed my eyes, and...

While I briefly woke up a couple times, I just now really woke up.

Can hardly believe it’s been two hours.

 

12:45pm

Felt pretty good when I woke up.

Before long I felt like my head and brain felt weird.

Definitely had an anxious reaction to deciding that fact.

Took a deep breath.

First sipped some water.

Drank a sip of fruit plug veggie juice.

Then ate my toast and egg.

Not sure if it made me feel better or not.

 

1:10pm

Still not sure.

My vision is a bit weird.

Head feels funny, and it’s a bit hard to think.

But I know I have to deal with my current fear of walking around.

I think it’s important to get up and about.

If nothing else I have to get to the bathroom again sometime...

 

1:30

I achieved the victory of attending a visit to the bathroom.

I there, and elsewhere approaching half an hour.

I did my business.

I (slowly) chased my little dude around a bit.

I picked up a few small things.

I put yesterday’s last load of laundry in the dryer.

I made a sandwich for my boy’s (delayed) lunch.

I filled my water bottle, and made my way back to my chair.

I did better than I feared. Not as good as I hoped.

My muscles quivered, shook, and trembled.

Standing at the table buttering bread, my heart rate was 115.

No idea if that is normal or not.

I felt rough standing, and walking, but I can’t always put my finger on why.

But basically I managed a stroll around my house,

with some small measure of productivity in between.

Oh! I also opened the door a bit, and the window behind me, for some fresh air.

 

2:45

Mostly feeling not too bad.

Right shoulder hurts.

Strangely for this time of day, I think I’m hungry.

I’m not used to feeling hungry anymore. It’s been a while.

But that being said, I’ve seen this pattern before.

No appetite. Suddenly starving.

I hope it means my body is trying to sort things out for the better again.

 

3:25

Ate a slice of bread with peanut butter (I know, I’m a little slow..)

 

3:40

Sat on the floor for a few minutes with my little dude,

pretending to play camping. Surprised how hard that was.

Just to sit on the floor. Felt like my whole spine hurt.

How can you feel unstable on the floor??

 

3:50

Sudden rise in anxiety.

Wave of tingles down my legs.

Burping.

Was just watching a video about milking cows.

Don’t think that was the trigger...

 

4:00

Anxiety is better.

But now I suddenly have terrible pain in my upper back.

A few minutes later and now my knee hurts quite painfully.

And my back feels warm and painful.

Still relatively low anxiety.

 

4:15

Husband brought a tray of vegetables!

Eating some carrots and sugar snap peas.

May also consume some brocolli and celery.

 

4:20

Sudden spike in anxiety again.

May have been brought on by knowledge of an event I’d like to attend, and can’t.

Or by knowledge of a task I will need to complete that I am not looking forward to.

4:40

My anxiety is high.

I’m not sure if it’s connected to vegetables I am eating.

Or some thought I am thinking.

Or the time of day.

Or what.

I don’t feel that rough in general at the moment.

Shoulders and back and knee a bit sore.

And very anxious and jittery.

 

5:30

Strangely feeling some anxiety at the moment about eating vegetables.

Currently starting a snack of tostitos chips and hummus

General anxiety is lower than earlier.

 

5:40

Muscle spasms in the back of my thighs.

 

5:45

Ate a few more vegetables

Just to prove I could.

 

6:10

Sudden pain in legs.

 

6:30-8:00

I actually spent an hour and half out of my chair!!!

At first my anxiety was very high.

I kept on the move, because I couldn’t hold still or sit down.

My legs hurt a lot, and shook and trembled.

Eventually I managed to sit at the table.

And I ate a bowl of salad with a bit of dressing.

At first it felt like, even though I was sitting still, my legs were still moving.

While sitting something in my abdomen was spasming.

My chest was (and still is) very tight.

I am now burping.

 

9:10

Currently struggling with burping and a thick lump feeling in my throat.

It’s been bothering me for a little bit already, but now my anxiety is beginning to rise

 

9:30

Anxiety fairly high.

Throat/neck bothering me.

Neck pain. Back pain. Chest pain. Leg pain. Knee. Ankle. Shoulder.

Miserable.

 

11:10

Going to bed.

In the last hour, ate the fried hamburger with onions

that was supposed to be the rest of my supper.

Also ate some tostitos.

Starting to wonder if the anxiety that started back with the vegetables,

can actually be blamed on the fact that my teeth hurt again.

My tongue also hurts some, but my teeth definitely more.

I have also experienced recently:

warmth and tingling in my scalp

terribly sore legs and buttocks

and a mild-medium headache

The pain in my neck and throat has thankfully improved.

Going to go to the bathroom, take my pill, and go to bed.

Hopefully that won’t take me too long.

[Waterfall]

Drank around 28 oz of water yesterday

Plus a small amount of fruit plus veggie juice

 

Fell asleep around 11:30

Noticed mouth was dry.

Was very unsteady trying to brush teeth and get ready for bed

Felt like my muscles were moving while trying to fall asleep

Had a hard time holding still to manage to fall asleep

 

Fitbit says that I slept 6 hours and 57 minutes

1 hr 43 min of REM and 1 hr 15 min of deep sleep.

No, I do not feel rested.

I can’t remember the last time I felt rested and refreshed.

 

7:00

Woke up

Heart pounding mild.

Felt like my heart was beating in my legs/like they were moving, when holding still

Back hurt

 

7:30

Got up

Sore

Mildly shaky

Trembling in some muscles

 

8:00

Took pill

 

8:15

Went to the bathroom

 

8:30

Sat in my chair to try eat breakfast

Moderate headache

Dry eyes, floaters in vision

Nauseated

Burping

General muscle soreness and twitching/trembling

Sharp pain in left shoulder blade

 

8:40

Eating egg with toast

Left side hurts

 

9:30

Sudden rise in anxiety

Left arm hurts

Shoulders

Tightness in chest

Short of breath

Feeling cold

(Put my sweater on)

 

9:45

Sudden wave of heat in my right arm

A minute or to later, waves of tingling in my legs, buttocks, and lower back

Now heat in my lower and mid-back. Moving up to my shoulders.

 

This whole heat thing in general is very new. Never had it before.

I first had it one night... last week? Then it happened on an afternoon a few days later.

Then it was the morning. Now it seems to happen more frequently throughout the day.

 

10:00

Still struggling with high anxiety right now.

Trying to remind myself that this feeling will pass, given time.

More waves of tingles.

 

10:10

Why do I feel hungry now?

Is this feeling even hunger?

 

10:25

Stomach is upset.

Bowels rumbling.

Tinglings waving (okay, I meant to write tingles,

but that was way too funny too change. I have to

laugh once in a while, or I’d never survive)

Anxiety relatively high.

 

10:40

Tingles/shivers in waves in my legs are driving me crazy.

Possibly connected to gas?

Should probably go to bathroom.

Feel really dumb, because I’m kinda scared to. Suck it up, princess.

Trying to remain calm.

 

11:15

Wish I could change my last post, cause I feel dumb.

But I feel like I should leave it.

Tingling, now nausea, and anxiety are really getting to me.

Really, seriously, need to leave my chair.

And remind myself that these feelings aren’t killing me.

Oh, almost forgot. Ate small 111g bucket of applesauce a short time ago. Maybe 10 minutes?

 

11:20

Finally got up and went to the bathroom. #2, Hooray!

Am currently shaking like a leaf.

Panicking.

Breast bone hurt.

Now it’s lower left ribs, where it normally hurts.

Tingling in the back top of my head. Was sharp at one point.

Just trembling.

Wish it would stop.

Was easier to walk around this morning.

Did I overdo it?

Is it a bathroom issue? A food issue? Was it the applesauce that made it worse?

Or was it the post I read from a friend about migraine with aura and vision being the early marker?

I know the post made me worry a little. But this is ridiculous!

I already tried to walk off the anxiety, made two beds. Just made me shakier.

I want to cry.

Chest is hurting quite sharply now.

Muscles still shaking.

Worst anxiety/panic I feel like I’ve had in a bit.

Okay... starting to calm a little bit. 11:35 now

Woah, wave of nausea.

Now I’m burping.

Going to go and try to distract for a bit.

 

12:20

Feeling a bit less anxious.

But my face feels... fuzzy? Sort of warm and tingly?

My bum feels... thick?

And I feel like I’m.. hungry again? Heartburn?

Burping, anyway.

Has it really been an hour?

So frustrated. And discouraged.

 

Little dude needed help.

So I just walked 10 steps away and back.

Not so shaky as an hour ago.

But it was still hard.

Glad to be back in my chair.

Vision has lots of floaters. Hard to focus.

Feet tingling.

Bum is kinda numb.

Still burping.

Feeling really nauseated. Wondering if I should try eat or not.

Certainly don’t feel like it.

Just realized I forgot my water bottle in the bathroom.

Haven’t drank much yet today.

Bum is tingling again.

And now my scalp is tingling.

And then my legs as well.

Stop the world, I want to get off.

[Waterfall]

Is there still a light at the end of this tunnel?  

[Rosetta]

Yes, Waterfall.  There is.  It's hard to imagine, and you can't see it, but it's there.

[Waterfall]

Thanks @Rosetta

This is crazy hard.  😢

 

This is where I have to believe you that the beautiful waterfall that others have seen is on the path up ahead. 

I'll just have to believe you. 

 

I hope that right now you are doing well.  

You should be proud of yourself that you have been drug free since early 2017!

I remember I used to think that my 'drug free' journey began when I went off citalopram last June(ish).  

But really, I haven't started that phase now yet even. 

And I've done so many dumb things since then... 

 

Trying so hard to learn how to do it right. 

And how to walk through this storm, without giving up.  

 

I don't think I'm surfing anymore.  

Not even on my knees. 

I think maybe I'm clinging to the board for dear life. 

Hoping we hit a calm spot soon. 

If it gets any tougher, I think I'll be in the ocean getting dragged by the ankle strap. 

Trying to take breaths at the right time. 

And hoping a shark doesn't eat me.  

 

I don't want to be ruled by fear. 

Or by symptoms.  

I don't want to be forced to think of myself as a hypochondriac. 

Or as victim, or sufferer.  

I want to be strong.  

I want to beat this!

[Waterfall]

Technically wrote this first:
 

1:05

I sat here for a few minutes, hands on keyboards, with my eyes closed.

I opened my eyes, lowered my hands, and just sat here, in deep despair.

How could I continue?

I’m not sure if the feeling lifted first, or if I ate first,

but I felt a bit better, and I forced myself to eat a piece of plain toast. Really not sure the order.

Then I began to play a dinky game for a bit.

And a few minutes ago, despite hearing from my husband

that he’s entering an important one hour meeting,

when I was counting on him to give lunch to the boys,

I still sat here, and had a brief moment where I felt... well, at least not horrible.

Did I actually feel better? Or was it just that I expected the news to make me feel worse?

I don’t know. But I’m not in the depths of panic and despair at the moment.

My vision just took a turn for the worse, and my stomach took a dip with it,

but I’m able to handle it just a tiny bit better right this minute, than I think I have all morning.

Not looking forward to getting up and trying to get the boys lunch, though...

[Waterfall]

Still have to get the boys lunch too.  And it's almost 1:30. 

And my lower legs are freezing. 

And my shoulders hurt a lot.  

Sigh. 

Can't wait for something to get easier.  

Instead of everything getting harder...

[Rosetta]

Hugs, Waterfall.  I would hold your hand if I could.  You are going to come out of this.  In fact, you are all ready.  You can't see it or feel it right now, but you are going to look back soon and realize at which point it started to turn around.  It could be today!  It really could.  Every day that passes you are closer to getting well.  - R

[Waterfall]

Thanks you so much @Rosetta

I can not express how much your encouragement means.  

 

I have to admit, I was really struggling this afternoon,

in addition to the panic and anxiety I was already feeling, 

Shep told me that I have to do my daily log differently. 

Well, please understand, I get exactly why she wants me

to do it more concisely.  I respect and admire her immensely. 

I just don't know how to find the brain power to do it.  

I don't know how to process my life, and how I feel, in that

manner.  I have always had a poor concept of time to 

begin with.  I know I'm a perfectionist, and I worry about

getting it 'right'.  I know that my own patterns of thinking

aren't helping. 

I just don't know how to change all these things. 

Especially at a time when I am already struggling so much.

 

So don't get me wrong, I plan to try.  

I gave up recording for today. 

But I will begin again tomorrow. 

In my best attempt at a -concise- daily symptom log. 

 

But this afternoon I was in the dumps. 

In the deeper dumps.  

Because it felt like a hole deeper than the one I already feel discouraged about getting out of. 

 

So thank you for encouraging me.  

Thank you so much.  

 

And please, all you volunteers who help us

please don't take this the wrong way. 

I'm just trying. 

And I want to try harder. 

And I don't know how.  

So please forgive me when I fail. 

I don't mean to be uncooperative.  

Don't give up on me.  

[Rosetta]

I recognize that issue; it is very, very familiar to me.  It has to do with prioritizing, sorting and organizing.  The brain doesn't know what to exclude.  So, it includes every detail.  There is no way to stop it except to not record anything. 

 

I have at times felt that I could not even organize the thoughts in my head.  Outside input is all jumbled up with interior thoughts and sensations.  There is no division between them.  They can't be separated.  Cause and effect are one.  Putting them down on paper would be very difficult unless it was stream of consciousness with every detail noted.  Another way I found myself confused was in trying to cook.  I could not decide what to make, what ingredients I would need, etc, but if someone gave me a recipe and set out all the ingredients, I might be able to put it together (depending on energy level).

 

Is that what's happening?  If so, I think I understand somewhat how you are struggling. I'm not sure how much my suggestions would help you or the Mods, but everything gets better with practice and baby steps are the way to begin.  So . . . You need a check the box sort of solution. 

 

How about this: break your day into 4 sections and write down a 1-10 rating of how you felt during each section in the areas of

1. anxiety, 2. discouragement, 3. physical pain and/or tingling and 4. temperature (chills, etc.)  Those seem to be your 4 main symptoms.  Put short descriptive phrases next to physical sensation and temperature only, not next to anxiety or discouragement.)

 

Copy and paste this:

 

After you wake up to right before you take Clonazapam, how did you feel?

Anxiety rating: ____

Discouragement rating: ___

Physical sensation:_____

Temperature:____

 

After first dose to pick up kids time, how did you feel?

Anxiety rating: ____

Discouragement rating: ___

Physical sensation:_____ (tingling, headache, RLS, muscle tension)

Temperature:____ (low legs freezing)

 

After pick up time to just before time of second dose how did you feel?

Anxiety rating: ____

Discouragement rating: ___

Physical sensation:_____

Temperature:____

 

After second dose to wake up time, how did you feel?  (I assume you take your second dose right after kids bedtime?)

Anxiety rating: ____

Discouragement rating: ___

Physical sensation:_____

Temperature:____

 

The Mods might want you to break the day up differently based on what they know about Clonazapam and the half life, but, in general, this format might give you an easy way to get started until you are able to use the format the Mods would like to see?  Once you build confidence using the more broad catagories of quarter day blocks you may be able to use an hour by hour format in a date book.  I don't know if this is also too hard, but if you can ignore the idea of "getting it right," and just do it for practice maybe you will find it leads you to a place where you can progress to reporting your symptoms in a useful way.  I hope so.

 

Love, Rosetta

[Waterfall]

Thanks for the good insights, Rosetta.  

I have a very hard time rating things by number, 

but you have some good ideas. 

I will think on it, and see if I can produce something more useful.  

 

I've had ups and downs today. 

Some parts where I felt less rough. 

And.. times more like now, where I feel like I'm dying.  

I'm pretty sure I'm not, mind you.  

But that doesn't stop it from being really hard. 

My whole chest feels wrapped in a vice.  Sore and tight.  

So, even though I know I can breath, it feels like I shouldn't be able to. 

 

Now, I actually came here to post, 

because, even though it was in a totally unrelated place, 

I came across this great.. saying?  quote? 

Whatever.  I'm going to share it.  

Because it's perfect. 

 

"At the end of the day, all you need is HOPE and Strength. 

Hope that it will get better, and strength to hold on until it does."

 

It's not my original idea, but I hope they won't mind I shared it here. 

I think it's probably applicable to a lot of things, but it definitely applies here. 

[Rabe]

Thank you Waterfall for the Quote!  Needed that!  Hope tomorrow is a better day for you!!

[Waterfall]

Thanks Rabe.  

I hope so too. 

I have to get to sleep first. 

To do that, I have to get ready for bed first. 

Sigh.  

[Waterfall]

Wow.  

Last night was a new level of horrible. 

When I finally got into bed well after midnight, 

every time I almost fell asleep, 

my body would suddenly get a wave of nausea and tingles.  

Happened like... 5 times? before I felt asleep.  

Fell asleep at quarter to 1.

  

Woke up again at 6,

and actually didn't have a cortisol spike. 

At least not right away... 

Then I started thinking.  

And then the burning started too.  

So thankful it's a 'spike' and that they 

don't happen all day.  

 

Anyway, all that was after one of the worst evenings. 

The most frustrating part, is I don't even know how to 

describe how it felt.  

I can tell you it was awful.  

But I can't figure out how to tell you -what- made it awful. 

I can tell you that at one point my heart pounded. 

That I felt it was hard to walk around. 

That at one point it was hard to read, or think. 

But none of those things seem to quite explain 

WHY it was that I felt so awful.  

And WHAT it was that I actually experienced.  

And in some way, that makes it all the more scary. 

Because if I don't even know what it was that I experienced, 

how can I make any sense of it?  

 

And it still feels like things continue to get worse.  

This morning my feet tingle and burn, or hurt.  

See?  I don't even know how to describe how they feel!

This is frustrating.  I have a good vocabulary, 

a bright mind, but I can't make sense of these stupid symptoms.  

And I don't normally get frustrated enough to use words like 'stupid'!

My butt muscles keep spasming.  Flutttering?  

My scalp tingles.  My lips tingle.  

My back hurts.  My bladder hurts.  

My heart pounds.  

My legs hurt. 

And I can't hold still. 

Not sure if it's just my legs that can't hold still, or all of me. 

 

And I'm terrified of feeling like I did last night.  

I'm terrified of facing many more days feeling like this.  

 

Life around me has never looked so good.  

And I've never felt less able to enjoy it.  

Or more discouraged. 

 

Part of me believes that all these symptoms, 

all fall within the umbrella of withdrawal. 

None of them, horrible as they are, are things

that other people with withdrawal have not

also experienced.  

So, when I believe that, I believe that these

symptoms will NOT kill me, and that over time, 

with fluctuatiions up and down, forward, and 

back again, that things will get better.  

 

But other times, I'm afraid to believe that's really true. 

And I'm afraid that things will only get worse. 

That one of these times, I'll just collapse.  

I won't be able to move.  Or, I'll just plain die.  

I'm afraid that one of these days, I just won't be able

to handle it anymore.  That I won't keep going.  

 

I don't know how I keep going.  

How I get up, one more time.  And then another. 

How I keep eating.  And drinking.  

And walking.  And getting things done. 

 

This morning, I'm not sure I believed I could do it. 

But I had to get up, get out, and drive this morning. 

I haven't driven in a week or two.  I've lost track.  

But I did it.  

 

I am repeatedly amazed by what I manage to do. 

Disappointed by all that I can NOT do.  

But still amazed, after I fall flat yet again, that I 

manage to stand up.  Again.  

That after each panic attack.  

After each wave of nausea.  

Or tingles.  

After each headache.  

Each miserable day. 

That each panic attack does eventually go away. 

Each headache subsides again.  

The tingles come, but they do go sometimes.  

And each day, when I'm not sure I can do another day... 

I do.  

Somehow.  Some way.  

I do it all again.  

Even though almost every day seems somehow 

harder than the last.  

Each one seems like more than I can bear.  

Somehow, I keep going.  

Somehow.  

I don't know how. 

But somehow, I'm still here. 

I'm still alive.  

And I'm still kickin'.  

[Waterfall]

I feel like one other thing bears mention.  

I feel like I should have included the chest/rib pain. 

And the part where sometimes I almost can't think. 

It's almost like a fog.  Or... something else I can't describe. 

I could have gone back and worked them into what I'd already 

written, except I felt like it would have messed with the flow and 

eloquence of what I already wrote.  

 

But anyway, these two are definitely among the scariest of my symptoms. 

The chest pain makes no sense to me.  Well... maybe it does.  It does 

make sense that it could be a muscle thing.  Your chest wall must have

muscles too.  It's just that... I worry that it could be an ulcer.  Or something

else wrong with my organs somehow.  I guess that's actually true of more

symptoms.  Like when my heart pounds, or my feet or lips tingle.  I worry 

that my heart isn't working correctly.  And that next time I stand, I'm going

to fall on my face, because my blood isn't getting pumped around enough.

Or maybe one of these times, my heart will just up and stop.  There have 

been times when I kinda hoped it would just stop.  And this struggle would

be over.  

 

I've just decided (again) that I worry a lot. 

I already knew that.  But sometime it's hits you in a new light.  

I just told my son this morning, that we often imagine our way through 

many more horrible things than what we actually experience.  

Except... what I am experiencing right now, is more horrible than I 

imagined I could go through.  Is it any wonder, when I keep experiencing

new horrible things, that I imagine other horrible things that might also

happen?  

 

The waves of nausea and tingling that I experienced last night, 

were NOT on the list of things I thought were possible.  

 

Oh, to go back to the little things I used to worry about.  

I SO identify with the thing I read somewhere, where they said 

you know it's withdrawal, because this is NOT what my anxiety felt like. 

This is anxiety grown into a massive, nearly unidentifiable monster.  

With a host of minions at it's side to annoy, pester, and frighten me.  

Strange how writing about him, this nasty monster, makes him a little

bit less scary.  At least for now.  

[Waterfall]

Still forgot to mention one thing.  

I mentioned and elaborated the chest pain. 

I forgot to say something I meant to about the brain fog. 

Cause when you can't think... what CAN you do??  

[Waterfall]

It's 10 o'clock and I am finally attempting to eat my breakfast.  🙄

I did eat -something- earlier.  Just not much.  And it wasn't my breakfast.

[Rosetta]

I don't know what to say except I'm thinking of you and hoping you will get some relief soon, Waterfall.  -Rosetta

[Waterfall]

Thank you @Rosetta

Today was a little bit better.  

Not great.  But a bit better.  

I really hope I see more better days.  

[Waterfall]

Sorry... speaking of the time distortion thing. 

I was thinking about it, and it led me to thinking (again)

that I wonder how much of this is withdrawal, 

and how much is just me.  

 

I know this is a frequent question.  

Everyone ended up on these drugs from some reason or another in the beginning.  

Doesn't help that I ran across a story today, 

of someone who happened to find out about how she just needs to be on drugs for life

for her anxiety and depression.  

Her brain just needs meds. 

 

I -know- that the drugs never worked well for me. 

I also know that I can't go back on them. 

My body can't handle them. 

But I worry about being able to handle life period.  

I worry about being able to handle my worries. 

 

I also keep wondering if exercise is helping, or hurting me.  

I should really include how much exercise I get in my log. 

But I'm not sure how.  Since the 'exercise' I get right now, 

is mostly doing small bits of housework, and rocking in my

chair.  I'm always wondering, should I rest and relax more, 

or should I get up and walk around more.  

 

I always used to think that I felt worse every time I got up

and did stuff.  But at this point, if I spend long periods of 

time just sitting in my chair, I don't necessarily feel any 

better.  It feels like a complete gamble, every time I stand

up, whether I will feel okay, or horrible.  

 

Sometimes, I get up and feel awful.  But I push myself (or 

someone else does a little pushing) and I feel better after

I am going for a bit.  It improves.  Other times I stand up

and don't feel too bad, or feeling horrible, but pushing 

myself just makes me feel worse and worse until I sit in

my chair and do nothing for a while.  Sometimes, I sit and

I feel better after a bit.  Other time, I stand up feeling just 

as bad, or worse, than when I sat down. 

 

Sometimes I sit here and my anxiety just seems to spike

out of the blue.  

 

I think I'm rambling, so I'm going to shush now.  

Time to go and eat supper anyway.  

Hopefully sitting at the table doesn't feel too horrible today... 

 

Oh phooey... that reminds me of my newest symptom

that I wanted to mention.  I'd already had a few days where

I found it hard to sit still.  I felt best sitting in my chair rocking. 

Well, now it seems that if I sit or stand or lay down somewhere

other than my chair, if I hold still, it feels like I am still moving, 

and/or my symptoms of tingling and heart pounding, increase. 

If I move, then the sensation stops, and the others fade as well.

 

Anyway.  REALLY leaving now.  🙄  

[Rabe]

How are you?????

[Waterfall]

6 minutes ago?  

I was wondering how to get myself to bed. 

 

I've been in a place somewhere between not great, 

and not super horrible.  

Surviving. Mostly without the same level of despair and panic I had for a bit. 

But this evening?  Wow, that was tough.  

Around 7:00, I felt just terrible. 

Balance was bad.  Could barely think, or read.  

Sudden wave of sweating.  Headache.  

 

Ate supper and felt a bit better.  

Still a headache.  

And none too steady. 

Just now had another wave of heat/sweat.  

 

How about you?  

 

[Waterfall]

Oh, just saw something about 'newest symptom' on the last post I made. 

I notice that while, on the whole, I mostly feel pretty rough. 

That subtly, the symptoms change.  

The tongue burning, for instance, improved. 

So did the sore teeth. 

Though both of them came back a little bit in the last day or two again. 

But not as bad.  

 

The last few days have brought a few new things again too. 

Heart palpitations, that I haven't had like this since the fall.  

My mouth, lips, and eyes have all been feeling increasingly dry. 

In spite of my attempts to drink more.  

That last one is especially funny, because a few months ago, 

I would suddenly get waves of saliva, out of the blue.  

See what I mean by changing?  

 

I just wish the dizzy/unstable/weak/pathetic part would go... 

I just want to walk around and do some housework every day. 

I want to sit at the table with my family for meals, and not feel

like I am dying every time.  Or like I'm going to topple off my chair. 

 

It's so hard to be patient when you feel like this.  

And your friends and family start to ask more questions. 

Why won't you come to this event?  Or that one?  

Won't you come shopping with me?  

What do you mean you won't be coming to 'X'?  

We miss you.  

 

Yeah.  I miss me too.  

[Waterfall]

I was actually getting ready for bed (finally!)

when I was like, how could I forget!

The lower left rib pain has definitely been worse than ever.  

I usually call it chest pain, but my husband and mother keep pointing out, 

that the area I am referring to is NOT my chest.  

Okay then.  It's not my chest. 

It still hurts.  

A lot. 

 

So that's gotten worse. 

As has the episodes of brain fog/stuffed fluff head.  

The sweating is new(er).  I've had it before, but not recently.  

The dry mouth/lips is definitely new. 

I've had dry eyes before, but it's especially bad. 

Headache has ramped up the last few days. 

I don't usually get it so constant for so long.  

Lower leg pains have also been worse.  

Constipation still an issue.  Bowels rumbling.  Gas.  Gas pain.  

Tingles.  Muscle spasms.  Twitches.  All still there.  

Unsteady.  Dizzy.  If anything the dizziness is worse too. 

Oh, and also 'episodes' of falling asleep.  

Can't keep my eyes open in the middle of the day.  

Dozed off at least twice today.  

OH, and there go the heart palpitations again.  Hate those.  

Gotta try add in some magnesium again... 

 

On the other hand:

The cortisol spikes have improved a bit the last few days. 

I've had less episodes of high anxiety for a few days, 

and the episodes I have had, have mostly been less intense. 

The couple intense ones I had, I weathered okay.  Shorter than before. 

Nausea has also been a bit better.  

Haven't noticed as much of the burning in my back/spine/shoulders. 

Have been able to hold still a little bit more than I could for a bit.  

Not as intense a need to move/rock as I did last week.  

Little bit less intense waves of despair.  

 

Oh, to see more rays of sunshine.  

Here's hoping I feel better in the morning!  

Been to the bathroom, brushed my teeth, taken my pill... 

Time to go and lay down!!

Try to fall asleep... 

 

And see what tomorrow brings.