12-18 month support

[[je...]]

Dang! I was hoping I would log in and you guys would all be feeling better. I'm positive we will all come through this wave feeling much better. About the asthma thing-- for me I could not get a deep breath of air and it wasn't just a feeling because once my lungs opened up I could instantly feel the difference. It was like a band was placed on the bottom of my lungs and I could only get a small amount of air. When I was in tolerance the Dr said I had asthma, but the inhaler she gave me did nothing- didn't help at all. So who knows? But my breathing has improved a log over the last few weeks, so I'm hoping its all w/d.

Nova-- I have the "fire" brain too-- its no fun.. What the heck is going on up there? Right?

Beulah-- I was encouraged to read your post, you sound really good. The nerve pain is my most hated sx  too.

 

I've been feeling better the last few days, everything is still there but seems to have calmed down a lot. I had a hard time falling asleep last night too sky--i kept having disturbing visuals flash inside my brain.. Anyone else get this? I only get this before bed too.

 

Feel better everyone, jenny

[[No...]]

Jenny ... good to hear someone is feeling better these last few days ... I think the revving is slowing down ... tomorrow had better be a better day ... or I shall ask for a refund ...

 

[[Co...]]

Nova, .  I wish I would have been on the thread earlier....

I had some errands to do and am just now looking at the boards

...........Here's the good news....It's going to lift. It's going to l8ft.  I have been crying in acute misery for a week. ....went to sleep yesterday afternoon. (after 3 nights,of insomnia). Slept all the way through until 8 this morning...unheard of for me for all of the last 2 years....REM sleep all through. I woke up this morning and felt 90% normal....head pressure zaps, hysterical hypochondria.  gone...Went  shopping with my daughter and still have energy and clarity...Nova , I thought I was dying all of this week.  It's gone. ..I could cry for you that this is beating up on you. It sounds exactly like what my last 2 or so weeks has been. I honestly thought I had kindled by taking less than 6 mg of beta blocker.  It was exactly like being in acute again.  A couple of days ago I couldn't do anything either.

......Nova.. this is going to pass. I wish this hadn't come around to you.  I do think ( crossing my fingers) it leaves us at a better baseline .  we'll see what comes along tomorrow. I will say that I did take 200mg Ibueprofen last night. But it doesn't feel like I will need to repeat it tonight.

.......I am thinking of you Nova...and everyone on the thread today...This just has to be our last plunge into acute....I will be on this afternoon and evening. Hoping to see people feeling better..  coop

..

[[Co...]]

Jenny, . Yes, I get the disturbing visuals and low tone tinnitus at night when I close my eyes. I have fallen into the bad habit of leaving my TV on and watch it until I fall asleep. Of course I live alone and the TV doesn't bother anyone but the dog. In acute I had to get up the minute I was awake or all the Twilight movies started rolling. I am glad that today seems a little better for you....hope it just keeps getting better.. coop

[[Co...]]

GMIT,...sorry to hear that you have Raynauds...I don't know what mast cell illness is but I had the same experience with RA.  the ativan really really helped the pain but all the other agony it caused was not worth it. Now I have learned some tricks to help with pain. I refuse the big gun stuff like methotextrate , steroids etc because,they are so destructive to the body.  I hope you are feeling better soon GMIT.  coop

[[Co...]]

Peace,....I know the fatigue. It has to be so hard to work every day...I honestly don't know how you do it. I have days where I can't do the dishes.. I am thinking of you Mighty Girl.. the fatigue will pass....Wishing you 2 straight days in bed.. love to you....coop

[[No...]]

Hi Coop ... boy so I understand why people throw in the towel sometimes ... today I am just plain sick ... the worst day in a very long time ... and I know it will break ... and I just feel so lost ...

 

And I am not lost, and I am not helpless ... and it sure feels like it ...

 

It rained all day and now it is snowing and blowing ... just feeling sorry for myself ... I did manage to make a loaf of bread ... and I did find a possible remedy for what I am experiencing as almost constant reflux ... 1/4 teaspoon baking soda in a glass of water ... it does seem to moderate something for a while ...

 

And I did have a "wobbly" shower a while ago ... so this ain't acute ... there is a baseline somewhere playing hide and seek in the background ...

 

Sounds like you had a pleasant day ... I will enjoy a pleasant day vicariously ... for now ...

 

Did my "stroke" test ... balanced on one foot for a minute and then the other one for a minute ... now if I can balance off both of them at the same time I will really be on to something 

 

Hope you have a good evening ...

 

[[Co...]]

Nova.  Lol, ....love your stroke test...the 'no feet at all' task has to definitely r/o stroke. I have huge stroke irrational fear.

..  Yes, I know the thought of, " I would do almost anything for relief"....I agree this last wave was the worst since acute. I have to admit that 3 days ago...the night you kept me company all night...I thought about calling my doc for an order for a rescue dose, but I just knew it would ultimately make me worse. I really thought I was dying.

.....If you are not opposed to ibuprofen you might try a low dosse. I don't know if my head agony was going to lift anyway or if it was the ibuprofen but I slept the night I took it ( last night).. but I got up today back to baseline..head sx way better. Definitely feel traumatized by it though . Its going to take awhile to get over it mentally.

......taking the dog out now...back on later....take care dear friend....Wishing you some relief ...coop

[[No...]]

Thanks Coop ... gonna shut down and try to rest for a while ... have a good walk ... 

[[...]]

GMIT,...sorry to hear that you have Raynauds...I don't know what mast cell illness is but I had the same experience with RA.  the ativan really really helped the pain but all the other agony it caused was not worth it. Now I have learned some tricks to help with pain. I refuse the big gun stuff like methotextrate , steroids etc because,they are so destructive to the body.  I hope you are feeling better soon GMIT.  coop

 

Thanks Coop! I'm not taking anything right now. We all have mast cells in our bodies, MCAD the cells act badly causing a variety of things, such as anaphylaxis, rashes, breathing difficulties, etc. like allergic reactions. I also have RA and fibromyalgia, but still feel so blessed!

 

I hope you are well! I pray for your (and everyone's healing)!

 

:smitten:

[[mr...]]

Whew, this stuff sure can be a "ride", huh?

 

Nova, I just love your analogies They are awesome

 

Coop, so glad you're feeling better today. So, so glad!

 

I've had the "looming fear" nipping at my heels the past few days. Coop, I've had that bp "fear also, and I'm a 33-ur old with lower trended and very healthy blood pressure - wth?! Makes NO sense. The voices of "benzo fear" have whispered the dumbest fallacies ever. It is only in waves that the mind even turns to listen anymore...we all know they're full of "horse hockey"

 

Today has been a little dizziness (or is it a touch of dr/dp?) where I feel a teensy bit spacey or "disconnected"; I was quite tired this morning upon waking and have felt like that here & there today; also had a little "dread" or a lying "foreboding" feeling also today - tries to say "You can't..." or "You shouldn't..." etc. Grr. Some weirdo thoughts also here & there. Also feel a bit more "aware" of things that need no attention -- you know how your body tries to get you to "pay attention" to things that don't matter occasionally So dumb. And so over it. As we all are, lol!

 

I know a window with a higher baseline is just around the corner - probably tomorrow! For all of us, YES.

 

WWWI - you doing alright? Been thinking about you And Drew? You too? Jenny, Sky, Peace, Green, HH, Coop, Nova, and everyone else - it'd good to hear from you all also I love that I always have something to read in this thread just about every time I log on

.

OK, off to walking for now Catch y'all later

 

Mrs.

[[je...]]

Wow Coop!! Sounds like you hit the lottery in the sleep department! It must have felt so good to wake up after all that sleep! So happy you are feeling better, you desrve it!

 

Nova-- hang on, this wave is on its way out-- I'm sure of it!

 

Hi Mrs 

[[mr...]]

Hi Jenny

 

Jus' here, bored on my walk.... 

 

Mrs.

[[pe...]]

I miss so much during the course of a day.

Thanks, Nova for your words, for your dream, for concocting the 'get to 'Easter plan'. Sounds like a good goal. Each week the demands at work seem to amp up. My healing is not yet keeping pace with the expectations of others. Ho hum.

 

I'm going to try to catch up on the thread and see if there's anything I can offer tonight... Stay tuned.

 

Peace2

[[pe...]]

Well I don't have much, too tired.

 

Jenny and coop - glad to hear you're catching a bit of a break!

 

Nova- ugh. I hate hearing how hard this bit is for you. But I know you've got it.

 

I was daydreaming at work this morning about the healing abbey, imagining if we were all together to care for each other. I had to chuckle at the spectacle we'd be. Burning, dizzy, barely breathing, confused, disassociating - all or none of us at any given time. "I'll make the tea. Oh, wait. I forgot where the tea is." Oh never you mind, dear. I'll get the tea.... Just as soon as I catch my breath."  And so on, until someone gets a window.

 

Tomorrow, everyone gets a window!!!! Or else ...

[[Co...]]

Thanks Mrs., ....it was wonderful to sleep . I had a great day of mostly window.. at least back to a good baseline, but I am still kind of shaky from the long wave and I can feel the anxiety ( residual I think) nipping around....could be my window wants to close. My windows usually last 12-24 hours.

.....I am sorry to hear that you have some fear and intrusive thoughts going on. ..  You have such a great ability to talk rational to yourself...in the middle of sx...you are going to be okay Mrs, but I sure wish you didn't have to have this. ..We are all going to make it, but we're sick sick sick of it.  Hope you wake up to a sunbreak tomorrow.  coop

[[je...]]

Well I don't have much, too tired.

 

Jenny and coop - glad to hear you're catching a bit of a break!

 

Nova- ugh. I hate hearing how hard this bit is for you. But I know you've got it.

 

I was daydreaming at work this morning about the healing abbey, imagining if we were all together to care for each other. I had to chuckle at the spectacle we'd be. Burning, dizzy, barely breathing, confused, disassociating - all or none of us at any given time. "I'll make the tea. Oh, wait. I forgot where the tea is." Oh never you mind, dear. I'll get the tea.... Just as soon as I catch my breath."  And so on, until someone gets a window.

 

Tomorrow, everyone gets a window!!!! Or else ...

 

 

Peace-- I just got a good chuckle out of this! Thank you! Sometimes ya just have to laugh at all these sx ... Love ya

[[Co...]]

Peace, ...lol...hilarious...I think of the Healing Abbey too from time to time...wouldn't it be great. I think there is huge wisdom in having the ' patients' take care of each other.  Nobody knows better than we do what it feels like and what is needed...BBs is so very close to a Healing Abbey ....I feel so lucky to have the support from all of you. I really could not do this without all of you.....Have you scheduled in a 2 day 'stay in bed' retreat for yourself?.  ..Excepting for the fatigue and work stress you are sounding good .....hope it just keeps going for you Peace....Sleep well.....coop

[[je...]]

HH-- great news! So happy you had a good day!

Sky-- so sorry you are having a rough day, let's hope this passes quickly for you-- head pressure is the worst. I think your lessons are good distractions. Feel better 

 

Coop and Nova-- you both sound a little better today, so I hope your day ends well 

 

 

I ended up forcing myself to take my kids to the park after dinner last night and I think the fresh air and exercise helped me yesterday. I tried jogging a little bit and surprisingly I didn't drop dead  I'm feeling much better today, still with a lot of brain sensations but my mood is better and sx  are more tolerable today. Jenny

 

Jenny, getting out the door and walking probably saved my life.  I always feel better when I do.

 

Did you jog far?  And did you have any after effects?  body pain?

 

 

Hi Green,

 

Not too far, maybe a 20 minute jog.. I did feel a little achy and sore afterwards with slight muscle weakness-- not as bad as I've had it though. Jenny

[[No...]]

Hi Folks ... a two hour rest seems to have allowed things to "dial down" a bit ... for me the "dialing down" is important, keeps those health fears at bay ...

 

This tells me how much energy my body is putting it my healing right now ... I perhaps need to rest more during the day for a while ... and it is curious how much my body seems to be in tune with this weather we have been having ... probably just a coincidence, or my scrambling for "meaning" ...

 

Gonna hang out for a bit ... see if this ramps up again ... just feeling the "calm" right now ...

 

[[Co...]]

So glad to hear this Nova....is the burning brain better? ...Feeling the calm.. such a good thing . ...

[[No...]]

Coop ... everything seems to be dialed down from an 8 or 9 down to a 2 or 3 at the moment ... did not really deep sleep ... more like a deep relaxing ... for a couple of hours ...

 

Now I seem to have that "I need some sleep" feeling ... gritty eyes, jangly nerves ... that sort of thing ...

 

How are you keeping this evening? ...

[[Co...]]

Nova...wow...a 2 or 3...that's great. I hope you get real sleep tonight. ...I am much much better...mental anxiety buzzing around my head like a little family of bees, but I think it's residual as that last wave knocked me sideways. I am just reading and watching TV and reading the threads. Distraction is such a good help with that garden variety fear..

......Sleep good Nova.  Tell the health fears that they are off duty for the night.  Tomorrow will be good.  coop

[[No...]]

Coop ... yep ... came up for air ... all seems okay ... did not have a train wreck ... gonna try for some sleep ...

 

Be well ...

 

[[He...]]

Hi Everyone,

Just checking in before heading to bed.  It's been a long day and I'm tired, but it's been a really GOOD day.   Despite a bit of a roughish start, it turned out that I felt good and normal.  I am starting to believe that I may actually be turning a real corner, not just a façade.  Fingers crossed!!

Love to you all and wishing you a great night sleep.