Waterfall: introduction

[Rabe]

Hi Waterfall...my heart is sad that you had such a challenging day...sometimes words are just not enough, but I wanted to try in some way to let you know how much you are cared about, how much you care for your family and friends here, how much your gifts of creativity, humor, strength, and endurance not only help you persevere but jump out from your posts and help others here...they help me!!

I can share that often there are times that I am not able to play games, watch movies, walk, cry, be on the forum, help my children or friends as I did...just too stressful and my system won't tolerate it and lets me know...and thank goodness for that because I would continue to push and try and climb every hill until I fell over if my body did not shout at me to stop and let it rest. 

You tried..bless you for that...but your body was saying no, not today....yesterday yes and maybe yes tomorrow...but not today.  Time to rest....you did a lot the other day when your mom was there! 

It must have been hard to hear what your husband said.  I believe he cares about you a great deal and SO wants for you to be better. I believe he wants to understand but can't...how could anybody except those who've experienced it?. Nobody I know ,except the people here, understand any of what I am going through...they only know that it makes them sad, and makes them feel helpless because they cannot make someone they dearly love better, a helplessness that is hard for them to accept sometimes.

I hope you will be kind to yourself.  I believe those around us get frustrated and want us well just as we get frustrated and want to get well.  Its like they have their own type of waves and windows just as we have our...you think? 

I know that when I am anxious I feel better when I am moving whether it is rocking in place, rocking in a chair, pacing, walking ... yes movement seems to make it better.  Your chair is a safe place that, with its movement, makes you feel better...thats ok. This too shall pass....love you!!!!  Hugs!!!! 💜

 

[DMV64]

I am so sorry you are suffering. I pray you will have some relief. I know it is hard. Most of my days I am struggling. We can only do it a moment at a time...and keep talking.

[mirage]

@Waterfall I completely understand about the dizziness being worse when sitting still. I have to be on the move a lot when it gets bad. Having movement helps. I have had times when I just get in my car and drive for a bit. 

 

Take each moment as it comes. Glide through and the next hour might be better. Hugs and prayers.

[Waterfall]

Wow.  Thanks, you guys. 

You're the best.

Hugs for everyone!  😊

 

Feeling really sick right now.

Hope it gets better soon.

Walking around is making me nauseated for some reason.

Blech.

Haven't had breakfast yet. 

Maybe that will help...

[Waterfall]

Ate my toast with egg.

I feel a bit better.

Not sure if it's nausea bothering me. 

More like cramps? Gas?

Less jittery/anxious now anyway,

for which I am grateful.

 

Waves of tingles this morning.

Sore lower legs and knees.

Sore upper arms, elbows. 

Sore neck.

Bad cramps, gas, burping.

Some nausea.

My head feels weird.

Feels like my neck is making me dizzy,

which makes no sense.

Dizziness is definitely worse last night and this morning. 

 

Had trouble falling asleep last night. 

Was quarter to one.

Woke up with a cortisol spike, quarter after six. 

Was dwelling on it all being worse again. 

Being scared. 

Didn't think I would get back to sleep. 

 

But I did!

And I went, er... to the bathroom again too!  

Crazy how exciting that can be. 

Compared to most Sunday mornings,

I didn't have trouble wanting/needing to fall asleep

despite the fact that I was worried that would be the case.  

 

And there was something that was fun. 

I have a small square paper notepad here. 

And I wrote all the letters of the alphabet on it. 

It was fun to have my little dude, 

(who has a rash, probably fifths disease)

sing the alphabet while pointing at the letters. 

 

So.  Another days goes. Another comes. 

Burp. Burp. Burp... 
Here's hoping for a better afternoon.  

A better tomorrow. 

And otherwise, that strength that will carry me through, 

until the days that -are- better.  

 

Hope you all have a sunny, pleasant day!

[Terry]

On 12/2/2017 at 2:01 AM, JanCarol said:

i don't know about the multi mineral - but here's a clue:  if it has calcium, magnesium, and iron in it - then stop taking it.  Anyone who bundles these together doesn't realise (or care) that they cancel each other out in the absorption competition.

Because I have osteoporosis, I'm taking a complex of calcium, magnesium, vitamins K2, D3, C. boron and strontium.  I'm hoping that you're not recommending stopping these, because I think they're really necessary in my situation.

[Terry]

On 12/2/2017 at 2:01 AM, JanCarol said:

i don't know about the multi mineral - but here's a clue:  if it has calcium, magnesium, and iron in it - then stop taking it.  Anyone who bundles these together doesn't realise (or care) that they cancel each other out in the absorption competition.

 

[mirage]

@Waterfall Your post sounded really positive. I heard you say so many things that are moving in the right direction. 😀

 

These symptoms we experience, come and go and change like the wind. Just when I start to think something has gone away, boom, it is back. However, all in all, things have improved.

 

I have my 10 year old nephew with me for a couple of days and I only get to see him once a year because they live in Japan. So, I spend as much time as I can loving on him. My kids are all grown so I get my snuggle fix when he is in town. Bonus...he lets me cuddle him. Can't say no to his Aunt. We have been binge watching Harry Potter and playing virtual reality with my 19 year old. It has been nothing but joy to watch him laugh. He changes so much year after year. I treasure my few days with him each summer. 

 

Blessed Sunday to all. Prayers and hugs.

 

 

 

 

 

 

 

 

[Waterfall]

@mirage I'm glad that I sounded positive - I do try.

I was surprised to read that at first, because I was thinking that this is one of the worst days ever.

I just keep trying. 

[mirage]

@Waterfall Each day is another day of healing and one more day toward a better you. Allow the symptoms to come and try not to fear them. You are sounding good. I'm thrilled to be able to support you. This journey is hard. Great things will come when all is complete dear friend. 

[Waterfall]

I think I'm looking forward to a change in the wind soon. 

Today has been one of the toughest days I've ever endured. 

I had a sensation I have never experienced this afternoon.

Honestly felt like, instead of waking up from a nap, my body

was starting up again.  After stopping.  Very awful feeling. 

Was disoriented. Weak. My skin all over felt strangely fuzzy. 

Never felt anything like it before, and hopefully never again. 

Just got up to go the bathroom again. 

Bad headache. Neck hurts so bad. Limbs hurt. Chest hurts. 

Weak and shaky. Foggy headed.  Burping non-stop.  Nauseated. 

I am so sore.  I wish I knew how to un-tense my body.  

Especially my shoulders.  

 

(Sorry... TMI here probably, but it's also Day #1

And it's the weirdest one ever. It only comes when I go to the bathroom.)

 

But I sang a song.  And it made my husband and children happy. 

That's my ray of sunshine this afternoon.  

[Carmie]

8 hours ago, Waterfall said:

I think I'm looking forward to a change in the wind soon. 

Today has been one of the toughest days I've ever endured. 

I had a sensation I have never experienced this afternoon.

Honestly felt like, instead of waking up from a nap, my body

was starting up again.  After stopping.  Very awful feeling. 

Was disoriented. Weak. My skin all over felt strangely fuzzy. 

Never felt anything like it before, and hopefully never again. 

Just got up to go the bathroom again. 

Bad headache. Neck hurts so bad. Limbs hurt. Chest hurts. 

Weak and shaky. Foggy headed.  Burping non-stop.  Nauseated. 

I am so sore.  I wish I knew how to un-tense my body.  

Especially my shoulders.  

 

(Sorry... TMI here probably, but it's also Day #1

And it's the weirdest one ever. It only comes when I go to the bathroom.)

 

But I sang a song.  And it made my husband and children happy. 

That's my ray of sunshine this afternoon.  

 

Keep singing Waterfall 🎤🎤

[mirage]

@Waterfall This is an odd journey. Symptoms due change like the wind. One day all will be normal. I just know it. It is wonderful that you were able to sing to your kids and husband. What a blessing and yes, such a ray of sunshine.

 

I've had increased anxiety lately. Just when it was so much better. I know there is nothing I can do about it and so I allow it to come and be with me. It does increase the dizziness and other symptoms but I can't change it, nor make it go away. Our life must go on. We have to keep moving forward, even though it is with baby steps. 

 

Looking forward to hear some good things from your day today waterfall. 

[Rosetta]

I'm thinking about you, Waterfall.  Maybe today will give you some moments of joy.  I hope so. - R

[mirage]

@Rosetta How are you doing?

[Rabe]

Hi Waterfall...thinking about you!  Hope today has some lovely 'notes' in it as well!!!  Take care!! 💜

[Waterfall]

Thanks again, everybody!  

Your encouragement means so much. 

 

This morning I'm feeling quite nauseated. 

Shaking quite a bit. Now I"m cold and almost shivery. 

Headache. Very sore neck. 

Limbs are heavy and sore and weak.  

Don't feel like doing anything. 

Not even any of my usual distractions.  

Missed my, er, weekly shower this weekend.  

Not feeling up for it right now either.  

 

Good points?  

I slept in!  

Good thing too.  Anything to make a day like -this- shorter.  😜

And I went... #2 again.  Hooray!!!  Is that two days in a row!?  

That's pretty exciting.  

 

Getting a bit messy around here.  

Going to try to get the kids to do some cleaning up today. 

Or at the very least, get them doing something other than watching tv, 

like they have been all morning.  

 

Hey, that's another good point...

Not today, but the last few days. 

I actually managed to have them go until after lunch with no screens for a few days. 

That's something.  

AND a minimum of half an hour outside every day of summer break so far!  

Which, so far, has always turned into longer than half an hour. 

 

I may still feel like the worst today, 

but I am glad I can still find some positives.  

I wonder how long this horrible wave can last?  

[mirage]

@Waterfall You are finding positives and that is great. This is a very difficult journey. 

 

You are good getting the kids outside and having them, play, instead of sitting in front of a tv or computer. 

 

One day at a time and slow and steady wins the race. 

 

[Sheera]

Waterfall—you’re doing great—and I know what it’s like feeling like you have to get the kids away from their screens. It takes so much energy to pull them away and then keep them entertained. WD makes parenting harder than it is already. Keep on!

 

Sheera

[Rosetta]

Thinking of you!  Parenting like this is such a problem.  Setting a good example is nearly impossible sometimes, but I hope they will learn perseverance is key, if nothing else.  Hang in there, Waterfall.  You really are doing a smash up job!

 

(Mirage, I answered on my thread, but I'm ok today.)

[Rabe]

Take care Waterfall!💜

[Waterfall]

23 hours ago, Sheera said:

Waterfall—you’re doing great

 

Thanks for stopping by, Sheera. 

I'm glad you all think I'm doing great... 

It helps to know that, when I sure don't feel it. 

I am glad that I'm able to do some things. 

I'm glad that not -everything- is falling apart. 

 

I still just can't shake the feeling that everything continuing to get worse. 

It's a horrible feeling.  

 

I try to convince myself it isn't true. 

I actually managed to sit with my family for lunch AND supper yesterday!

It wasn't easy, but I did it!

But then I think to myself, that it was really hard. 

Probably harder than it's ever been.  

 

I did manage to wash my daughter's sheets this morning!

But, after doing that, and collecting the rest of the laundry, 

I was really shaky and nauseated.  

A really destabilized and odd feeling.. probably the worst ever. 

 

Last week, I had a headache all week.  Worst I'd ever had. 

Well... except that it wasn't.  I had a worse headache a week before. 

This has just been the longest lasting one.  

This week... I have a weird feeling in my head. 

Like nothing I've ever had before. 

It scares me, because I can't make any sense of it. 

 

Is it really all the worst ever?  It IS possible. 

Or is my perspective just that far off?  

 

I try so hard every day to find the positives.  

Why is my brain trying to hard to miss them? 

I hate being so scared all the time.  

 

The kids have been playing pretty nicely today. 

They quietly watched tv until around 8:30, 

when I told them they had to get dressed and eat breakfast.

(Not necessarily in that order.)

Then they spent some time outside. 

Did some playing.  Some reading.  

On the whole, they've been really good today. 

And aside from the early tv, they haven't been 

behind a screen so far today!  

 

I personally got the two little boys beds made. 

Washed my daughters bed.  

Collected the laundry. 

My Mom stopped down, and helped make the bed. 

Sorted and started the rest of the laundry. 

We unpacked another box or two, sorted a few things. 

And then I was done.  

 

Could barely read anymore.  

Could barely make it to the bathroom anymore.  

Anxiety is high again. 

Pain is high. 

Function is low.  

 

I feel like I sound like a broken record. 

Just like my family, you guys are going to get tired, 

of telling me that REALLY, I'm fine.  

One of these days, I just have to believe it.  

Apparently, I don't know how. 

 

I just keep doing as much as I can. 

Stopping, when I can't. 

 

Last night, my head felt so weird.  

Seems my latest 'symptom' is to have

weird sensations I can't even categorize. 

It wasn't a 'headache'.  It wasn't dizziness. 

It was a weird feeling in my head. 

It had some characteristics of both. 

And neither.  

It felt like my head was... thick? 

Tight?  

I don't know. 

It scared me.  

Again.  

 

Sigh. 

When will this nightmare cease? 

When will I get some relief? 

[Waterfall]

Toothache is back.  

Couple days now. 

That's annoying too. 

At least it was gone for a while.

I think maybe I can stand up again.

Going to test the theory...

[mirage]

@Waterfall You are getting some things done and that is a big deal. I think, though this journey, we have to live each day the best we can and we have to know that one day, we will be good again. 

 

You are in a position of trying to heal and, at the same time, be a mom. I am older and my kids are all grown. While I do work, part time, I just have to really worry about taking care of myself. 

 

As far as the feeling in your head, I think I get it.  I understand the anxiety and its symptoms, I understand the dizziness and I have, slight head tightness and jaw/ear pressure. I know that is from the muscle tension, probably from the anxiety. However, I just have a lot of days when I just feel odd. I don't feel sad, or depressed. I'm just off and don't feel right. I sort of think, for me, my brain is confused. There are a lot of connections that were there from taking the med and they aren't there now. So the rebuilding of these new connections is taking place and nothing is in order any more. I think our brains are trying to regain order. 

 

Keep doing what you are doing and I'm sending big hug to you!

[Waterfall]

Well, whaddaya know. 

I could stand. 

Was pretty wobbly and unsteady. 

But I did it. 

And this time, it did improve over time.  

So I got a load of laundry hung up and folded. 

It was a small load, but still... I did it. 

 

I've been thinking about what mirage said, 

about writing with the 'wrong' hand. 

I've been thinking about it a bunch. 

I like to do arts and crafts... 

So today, I ended up randomly drawing some pictures. 

I first asked my son for a random word. 

And then he gave me another.  And a third. 

And then I found a random word generator. 

And drew two more.  

I would be tempted to post my pictures here. 

But I think that I could easily produce a large number. 

And that would quickly flood my thread beyond it's original purpose. 

[Waterfall]

29 minutes ago, mirage said:

Keep doing what you are doing and I'm sending big hug to you!

 

Thanks, Mirage.   

[Waterfall]

Aw, crumbs.  

I went for a very short walk outside.  

Up and down a few stairs. 

Been feeling sick and freaked out ever since. 

 

Feet tingly/numb. Knees feel thick and painful. 

Chest hurts.  Back hurts.  

Walking anywhere right now, feels really, really hard.  

Sitting in my chair even, my anxiety is quite high. 

 

I don't know how I am going to get to my doctor's appointment on Friday. 

Why is moving, or exerting myself, even a little bit, so hard?

So frustrating.  

 

But hey, even feeling this rough, I did get up and walk around a few times. 

Even if I thought I was crazy to do so.  And even if it -did- feel almost like it'd kill me. 

And one of those times, I was talking to my Dad, and he said I've been looking better. 

I don't know how.  But if I'm looking better, I'll take heart from that.  

[Rosetta]

Hey, Waterfall.  I hope you get some relief soon.  It does amaze me how much you accomplish.  Keep going, and you will get there! - R

[mirage]

@Waterfall It is good that you got out and walked. Although you feel bad now, I truly think any form of exercise is good. Keep going. You are progressing in the right direction. 

[Waterfall]

@mirage Good to know. I did keep walking around. 

But, even after I've been sitting in my chair awhile, 

watched two shows with my kids, and eating some salad, 

my anxiety continues to rage.  I hope it settles soon. 

Just trying to chill right now.  

[mirage]

@Waterfall the anxiety can be awful. I get it no matter what I'm doing. I was doing some fun online shopping the other day and my anxiety was through the roof. I can't seem to find anything to bring it down. Ive tried reading, meditating, watching tv and nothing seems to help. It seems to come and go on its own will. I think our bodies are doing it automatically. I also think it is a spike in cortisol. I had a 24 hour cortisol test ran and it showed that it is really high in the morning and then goes down and it spikes again in the afternoon. It seems that is when my anxiety is at its worse, in the morning and in the afternoon and then it gets better as it gets later in the evening. Curious if that is when yours is bad? If so, your anxiety could be flaring up because of the cortisol. 

[Waterfall]

Good Morning, World!

 

@mirage 

So far, I have not been able to detect a specific pattern like that.  

Any time I think maybe I've found a pattern, I'll almost always find

that the very next day, will defy the very pattern that I thought I'd

found.  

Today, I'd tell you that it seems most days I wake up, and after I 

may, or may not have a cortisol spike, often first thing after I get

up, is when I often feel the best.  

But I can think of days that don't fit that. I had one just the other 

day when I got up and was shaking for the first couple hours.  

I used to think that I usually felt better in the evenings, but then

I had a few bad evenings, including a few cases where I had a 

panic attack out of the blue while sitting in my chair in the 

evening. 

 

This morning, I woke up at 7:00, and couldn't even doze off again. 

I laid in bed until around 8:00 anyway. Spent some of that time 

reading something on my phone. 

Then I got up, ate a sausage, went to the bathroom, and... 

*drum roll*.... finally took a shower!!!  

I felt okay at the beginning, but by the end, I felt I could barely

stand. Retreated to my chair afterwards, and have struggled to

do anything, and keep my anxiety from spinning out of control

ever since. 

Sigh. 

I'm trying to accept tein.that maybe things will get worse for a while

still, and that this still can mean that I will get better later.  It's just

so hard to look back just a couple months and see all the things I 

was doing then, and how little I can do now. 

 

Things I am currently trying:

Avoid sugar.

Eat lots of protein.

Eat smaller amounts frequently.

Eat enough in a day.

Eat enough fiber

Eat more vegetables, especially leafy greens

Eat some fish at least once or twice a week. 

Drink more water. Currently roughly 6 cups on average

At least get up and walk around the house a little bit a couple times each day.

And I try to get a minimum of 6 hours of sleep, ideally aiming for 7 1/2 or more.

 

That's all I can think of for now.

[mirage]

@Waterfall This journey definitely keeps us guessing. Things can change hour to hour. That is what is so frustrating, I think. It isn't like anything normal where, when you start to feel better, you just keep getting better and better each and every day. With this, you can have a good few hours and then, you are back into the throws of symptoms again. 

 

My dizziness is improving. Now that that has gotten better, I seem to notice the anxiety is worse. Perhaps the anxiety was always this bad but I just didn't notice it because I was so focused on being dizzy? That said, I am taking this as a good sign. Meaning, that I am not as focused on the dizzy since it is better and now I need to be more accepting and let go of the anxiety. 

 

I still have an odd feeling. Can't quite put my finger on it. I can best describe it like, things just aren't balanced in my head. 

 

My sleep is improving. I take less than 1mg of melatonin at night and I can fall asleep pretty quickly. I am getting about 6 hours straight. Looking forward to getting more but happy to have that considering, I got about an hour, here and there the first 6 to 9 

months of this journey and had my heart beating out of my chest 24/7. 

 

Sounds like you are setting a few goals for yourself each day and that is wonderful. It sends positive messages to your brain when you accomplish the things you set out to do. Another small part of healing. Keep motivated. Hard to do but i'm sending you support. 

 

 

[Waterfall]

I've been trying to find activities that will send those positive messages to my head. 

I just find it hard to focus on anything. The last couple weeks I could easily spend 

hours reading articles or playing dinky games. Today, I don't seem able to play or do

anything for more than a few minutes. 

Today is really hard. My vision is being a pain. Had a scary moment earlier when it went

totally blurry. Otherwise it's just hard to focus, and to process things. I can't read much. 

What I read, brings me stress trying to process it. Trying to play dinky games, either they

cause stress, or my arms cramp. My head hurts. My balance is poor. My head feels funny. 

It's just hard to do anything right now. 

I thought about drawing again. It gave me some pleasure yesterday. But just the thought

is causing me stress. 

So frustrating. 

I can't cross-stitch, because it's hurts my back and neck even more. 

I can't go for a walk.  

I'm having trouble reading. 

My hand almost hurt to much to open my window.  

This is just SO frustrating.  

 

I spent an hour or two, just sitting here with my eyes closed. 

Dozing a little. Interacting with my kids a little. 

 

It's just hard to keep my spirits up. 

Thanks for helping.  

 

I was going to say, it's just so hard to find things that I can do, that I feel like doing. 

I think the key right now, is to do things that I -don't- feel like doing. 

I've mostly focused on eating, drinking, sleeping, and getting a few chores done. 

I need to find something 'fun' to do, even if it's not fun.  Okay, maybe not -need-, 

but I think it would be a good idea. 

And I think it might be a good idea to find a way to start some stretching or something. 

I might spend days thinking about it, before I actually manage to -do- it. But we'll see. 

 

I think I'm also going to cast about on the forums, and see if I can find anyone else's

experience with DNRS, or Gupta, or EFT, or Nemechek protocol, and see if anyone has

had any success with any of them. I've already been through a few regular doctors 

and their tests, and naturopathic doctors, and their tests, and their supplements and

herbal remedies, plus a couple therapists. Tried massage, acupuncture, and cupping. 

Maybe something else will help. Maybe it won't. But maybe it'll give me something

else to think about, instead of worrying about how I feel. And if actually helps, bonus. 

 

[mirage]

@Waterfall Good idea to find something new to do and maybe something you don't actually feel like doing. I think that gets your brain thinking in a different way and makes it work a smidge harder. I look at it this way, you are already feeling so bad, it can't hurt to try other things. 

 

Even though you are having a rough day, the fact that you are willing to try some other things and even think about trying some other things, says that you are battling to win this. I think that is a good sign. 

 

Hang in there. You will beat this. 

[Rabe]

It is hard to find things to do with the limitations these drugs construct.  But you have certainly been successful thus far, Waterfall.  For me it often doesn't feel like success because I am not able to do/be what I could before.  Thinking about you!💜