12-24 months and up support group

Hey Deanna! 🤗❤️ How are you doing?

What are you up to? How’s the constipation?

Hi All -

 

I have been busy hosting my brother and his family for about a week now.  I am sleeping alright (about 7 hours) but I am very tired, and the constant socializing beyond what is normal has been a stress on my system.  The weather is not good for several days now and the family is bored but I cannot do more than I am.  I have begun to awake with low level anxiety again which had been gone for many many months.

 

I know it is just too much stress on my still delicate system.  Hubby is tired too and I FINALLY have gotten through to him that he commits us to too much.  So looking forward to getting my home back and the peace and quiet I am used to.

 

On the plus side I found this silly British drama (Doc Martin) on Acorn TV (streaming)....It is just right not too stimulating!!!

 

Hope all are doing well.

 

Haven't seen Leann lately but I cannot imagine having family in the house for weeks while being sick with Covid! Hope you are doing better Leann!!!

Thanks I’ll check out doc Martin 

Good that hubby is getting it finally. Yay!

Yes I’m having an uptick in my boatiness and a couple of other symptoms too. I think I’ve also been doing too much so I’m scaling back. Felt like crap yesterday and today isn’t looking better either. So I’m resting resting. These symptoms circle back when they want. Sometimes it’s not that we did anything to cause it. It’s just the roller coaster way it is. But just in case I am doing too much….I listen to my body and just chill.

Unbelievable that I’m one week from being 23 months. And still having trouble riding in the car and certainly not driving. Still having waves ( definitely milder)  but my windows are much nicer. So onward I go until I’m at the finish line. Which I see in my very near future.  And yours is too Deanna.

Just like Leann, it’s nice to finally see those subtle improvements add up. That’s when you know you will be alright.

Hi Lady den, it’s difficult getting balance right, I’m terrified I’m going to regress back to moaning Minnie again. Hope you soon bounce back.Been walking to the supermarket most days with my hubby and going inside. Did  briefly go fir short walk on my own today Not even attempted to drive yet, haven’t been out in car much so just been round block with husband. Will try short trips to try get used to it. What I find so hard is explaining  it to friends. Friends coming over Saturday, they live with son & wife , said did we want to go over there instead as he’s making pizza. I’m ok going see people locally but it’s over half hour car ride away. Know I’d just freak out, so  up with some feeble excuse not to go. People can’t understand why I’m still sick. Keep getting told should book a holiday, at loss as to how to explain benzo brain😱😱😱😱

Hello to all. Leann, I'm so happy to hear that you're making this great progress. Good for you! Dea, glad to hear you got through your week with your family now just rest up and feel better. LadyDen, I'm sorry to hear that you had a bit of a flare up. But if you were overdoing it,it's a good thing you're going to cut back and rest up. I hope you start feeling better soon. That's great you're almost to the 23 month mark. It's quite an accomplishment.

 

I haven't been posting much because things have been crazy! I had a couple brief windows but the days that are not window days have been absolutely horrific. It seems as though I'm in some kind of a really bad wave with all my symptoms worse than ever and some new ones popped in as well as some old ones came back. It's been pretty unbelievable. I sure hope this is the wave they talked about before healing happens. I'm just two weeks away from 24 months.

 

Hugs to all!

 

LiveLife

Hi live, after Covid I felt like I was in acute again and felt pretty bad before. So I think could well be sign recovery is round corner fir you. I’m trying be realistic, recovery from mental symptoms takes months, long way off feeling normal, more case baseline has changed, and very subtle changes, things stressed over before have gone. Hard knowing how much to push yourself, as lady den found it can back fire. Desperate fir few days away but would be a disaster as too soon. Still can’t plan anything but awful waves have subsided and sure they will soon for you as we are similar timeframe. xx

 

Hi  Everyone!  I think each of us are seeing our own flavor of progress and of course it is so unique for each of us!  Last night I finally slept better as my company left the day before and I'm getting back to routine.  As is the case sometimes I do NOT have a good day after I sleep well - I choose to think it is because more healing has happened and the body and nervous system must adjust.

 

Today I have a new symptom:  Left leg tingling like pins and needles.  It seems common for many BB's and so I know in my heart that it is a weaker manifestation of my left leg pain.  It ramped up to achy-ness before it dissipated but interesting development just the same.

 

We are getting there!!  Wave by wave, we are progressing 

Hi Lady den, it’s difficult getting balance right, I’m terrified I’m going to regress back to moaning Minnie again. Hope you soon bounce back.Been walking to the supermarket most days with my hubby and going inside. Did  briefly go fir short walk on my own today Not even attempted to drive yet, haven’t been out in car much so just been round block with husband. Will try short trips to try get used to it. What I find so hard is explaining  it to friends. Friends coming over Saturday, they live with son & wife , said did we want to go over there instead as he’s making pizza. I’m ok going see people locally but it’s over half hour car ride away. Know I’d just freak out, so  up with some feeble excuse not to go. People can’t understand why I’m still sick. Keep getting told should book a holiday, at loss as to how to explain benzo brain😱😱😱😱

Yep explain a million times and they don’t get it! We barely understand it ourselves.

Yes I’m doing short car ride trips too so I can get used to it. Then I’ll try a quick store run or grab a burger in a drive through….something quick. Baby steps. Glad you walked a bit and was brave to get out. Pizza sounds good. I’m eating pizza again now but no preservatives and light sauce. I’m enjoying it! If you’re not ready to go riding too far then don’t. If you’re not ready then it would only freak you out as you said. Go when you are calm and mentally prepared so it can be a success.

Big hugs and happy to hear from you sweetheart

Hello to all. Leann, I'm so happy to hear that you're making this great progress. Good for you! Dea, glad to hear you got through your week with your family now just rest up and feel better. LadyDen, I'm sorry to hear that you had a bit of a flare up. But if you were overdoing it,it's a good thing you're going to cut back and rest up. I hope you start feeling better soon. That's great you're almost to the 23 month mark. It's quite an accomplishment.

 

I haven't been posting much because things have been crazy! I had a couple brief windows but the days that are not window days have been absolutely horrific. It seems as though I'm in some kind of a really bad wave with all my symptoms worse than ever and some new ones popped in as well as some old ones came back. It's been pretty unbelievable. I sure hope this is the wave they talked about before healing happens. I'm just two weeks away from 24 months.

 

Hugs to all!

 

LiveLife

Hugs Live! Yes ma’am we seem to be having nice window and rough wave pattern. The same with me new ones popping in briefly and some symptoms seem to have gotten worse when I’m in a wave. Strange but I guess we have some fine tuning going on. Or rapid cycling. Mine are all over the place. I’m one week from 23 months. Yep….crazy! My new symptom is feeling a spot on my face, arm or leg that feels like I rubbed it on a carpet. It’s mild and brief but very random. Never had this before. Also I used to get spells of feeling suddenly overwhelmingly sleepy. That has been gone for months but as of today it’s back. Fuzzy vision off and on is back. Tight temples is back…..ughhhhhh! Good thing is they are milder than before…thank god!

Sorry you’re in the trenches too. I’ve been in this wave since Mother’s Day.

Love and hugs 🤗

Hi  Everyone!  I think each of us are seeing our own flavor of progress and of course it is so unique for each of us!  Last night I finally slept better as my company left the day before and I'm getting back to routine.  As is the case sometimes I do NOT have a good day after I sleep well - I choose to think it is because more healing has happened and the body and nervous system must adjust.

 

Today I have a new symptom:  Left leg tingling like pins and needles.  It seems common for many BB's and so I know in my heart that it is a weaker manifestation of my left leg pain.  It ramped up to achy-ness before it dissipated but interesting development just the same.

 

We are getting there!!  Wave by wave, we are progressing 

I’m the same way….the following morning after I sleep very well is awful. Matter of fact I feel awful the whole day after sleeping well. You would think it would be the opposite. Right? Sleep good feel good….nope!

 

Feeling crap today and very jittery again think like Lady D maybe pushing myself bit too much. Hopefully the feeling good will come back. Is it normal to have a really bad day after period feeling better, bit clueless about recovery.Had really bad inflamed sinus since Covid, end up with awful migraine type headaches some days like today, and vision bit funny when watching tv. It does seem to have similar symptoms to benzo , pollen bad at moment which makes things worse but  managed to stagger to my Pilates today. Hope you are all doing OK especially you Lady Den xx

Hi Leann, Yes indeed we all have those nasty down days following a period of feeling better.  A couple of weeks ago I felt "healed" as I had days and days of feeling good with energy, strength and no pain!  Then I started doing more, and I was able to sustain that higher level of functioning for a good three weeks before it all started in again.  Last week or so been back in a low-level wave and all the familiar characters showed up to play: Fatigue, aches and pains, broken sleep and my personal favorite, neuropathy in left leg (not!)

 

So back to sitting on the couch during the day and strict healthy diet (I cheated a couple days with sugary donuts, argh!)

I feel it is easing a bit today.

Onward we go!

Thanks that”s reassuring to know. Just feel I should be doing more to recover .Have any of you tried pro biotics ? Got some might try again. Think J’ve got lot general inflammation probably from Covid. Get the throbby sensation soon as I lie in bed from the sinus, had a nail come off, seemed grow back, but gone yellow down side and seem be loosing the new nail now. Apart from the brain damage body falling apart too. Just so frustrating when you get a glimpse of normality and gets snatched away. I haven’t been sleeping well which makes an enormous difference to me. In past reached fir odd rescue dose when that happened but realise it was delaying recovery so no more!

Yes Leann. I’m in the same boat. I was feeling much better for awhile but as of this past week it’s been back to symptoms that I thought were gone or the ones I still have are revved up. It sucks for sure! But, it’s common….Deanna, me, you and I’ve read of others having this happening too. All of us at the same time it seems. It’s frustrating because as Deanna said, we start living a better more normal life because we’re feeling better. Because it’s for awhile we think it’s gone. We’ve gotten used to the “ new more healed” us and have a routine centered around that. Then boom…we are back to crap…..on the couch all day ( Deanna) in the bed most of the day ( me). Let me say it again……

 

IT SUCKS!

For the first time yesterday morning when I was in a wave I was able to push through. It felt good to see that. But it was very hard to do. Well, atleast now I know I CAN if I have to. That is evidence of my healing even though I’m back to feeling like crap. Good thing, Leann, is it’s temporary. If we felt better before then we will again soon.

We know the ropes by now, right?

Hope you get back to much easier parts of the road of your journey. We’re here for each other….how awesome is that!

Love you my dear friend….hugs 🤗🌹❤️

 

Deanna I’m sorry you’re backtracking too. I guess we just pull out all our old coping skills until it settles again. Lord knows this wears us out! We are at the end. I think we are fine tuning….wow I hope so! And I’m marveling that this is happening to us at the same time. Wow! Song vand hugs 🤗❤️

 

Live and others….check in please. How are you doing?

Similar to you all.  Frustrated about being back in it after feeling good, and hoping this is over soon. 

 

My kids have covid this last week.  I've been testing negative, but was obviously exposed to it so think I have some inflammation going on in spite of not having actual covid. 

 

I woke up at 345 and couldn't get back to sleep which is my worst night since my zero night on April 29.  So 2nd worst night since early February. 

Morning hugs to you, Accidental. Yes I understand what you mean. Am so sorry that you’re circling back too. It must be in the water around here, right?

Here’s something strange for me….when I sleep well ( solid, no waking up in the middle of the night, dreaming, deep sleep for 6 or more hours) the next morning my dread is bad. As you probably have read in earlier posts, Deanna is having the same experience. It would seem that if we sleep well then we would feel good the following morning. But as usual this crazy recovery doesn’t follow any rules. Has a mind of its own. Kicking our butts in the weirdest ways….at random….unpredictable lengths of time….poof gone are certain symptoms that we think are gone for good then poof they circle back…..so many ups and downs. No wonder we get tired and frustrated and even began to think it’s permanent. But don’t believe that! It’s just doing it’s crazy turns. That’s hard to believe when we feel sooooooo bad. And even harder when it happens over and over. But, it’s hard at work doing repairs the whole time. One of these “ poof gone” will be the forever one. 

So, in the meantime, we just distract and our job is to get through the day….and we will 

Sending you hugs and healing wishes. Hang in there. You’re not alone, we are getting our butts kicked too.

🤗❤️🙏

 

Like an old radio 📻 it’s trying to find the station so we can dance to the music 🎼

Thanks for the positive post and morning hug!  Hugs to you too. 

 

I'm actually lucky in that if I sleep well, I feel well, with low dread.  It's not that I don't have any, but I would say the dread/sleep relationship is inversely related.  Everything else you wrote is spot on though! 

 

 

 

 

Like an old radio 📻 it’s trying to find the station so we can dance to the music 🎼

 

LOVE that analogy LadyD!  I too think of it as fine-tuning.  It's all so familiar (the symptoms) but somehow it is different too.  Can't put my finger on it.  Maybe the hope of healing just around the corner is making it feel different.  Unfortunately my mind is always searching for associations to what I ate or did.  But we know that is a wasted use of mental power.

Thanks that”s reassuring to know. Just feel I should be doing more to recover .Have any of you tried pro biotics ? Got some might try again. Think J’ve got lot general inflammation probably from Covid. Get the throbby sensation soon as I lie in bed from the sinus, had a nail come off, seemed grow back, but gone yellow down side and seem be loosing the new nail now. Apart from the brain damage body falling apart too. Just so frustrating when you get a glimpse of normality and gets snatched away. I haven’t been sleeping well which makes an enormous difference to me. In past reached fir odd rescue dose when that happened but realise it was delaying recovery so no more!

 

Yes Leann I started trying probiotics last November.  I was able to get through 3 weeks of using before I had a paradoxical reaction.  Ended up in bed for days with horrible abdominal cramping, and constant feeling like I had to go to bathroom, but in the end it was more of less normal, just distorted feeling in my gut.  Really felt like I had IBS.  Finally cleared up after a week off the probiotics.  I was using a single strain formulation: Culturelle here in the USA.  L. Rhamosus as I recall.  Had good data on helping with anxiety.

 

The upshot to that was I felt like I took a huge step forward the month after that.  So unwilling to use it again I am sticking with kefir which has 12 strains.  I've come to believe that alot of any one strain seems unnatural, so sticking with foods instead to get my probiotics.  I personally believe it is a huge piece of the puzzle.

 

I am now thinking of trying Kombucha - probiotic tea - but treading so very gently.  Started with a few sips 2 weeks ago.  Once I stabilize again will try some more.

 

 

Thanks that”s reassuring to know. Just feel I should be doing more to recover .Have any of you tried pro biotics ? Got some might try again. Think J’ve got lot general inflammation probably from Covid. Get the throbby sensation soon as I lie in bed from the sinus, had a nail come off, seemed grow back, but gone yellow down side and seem be loosing the new nail now. Apart from the brain damage body falling apart too. Just so frustrating when you get a glimpse of normality and gets snatched away. I haven’t been sleeping well which makes an enormous difference to me. In past reached fir odd rescue dose when that happened but realise it was delaying recovery so no more!

 

Yes Leann I started trying probiotics last November.  I was able to get through 3 weeks of using before I had a paradoxical reaction.  Ended up in bed for days with horrible abdominal cramping, and constant feeling like I had to go to bathroom, but in the end it was more of less normal, just distorted feeling in my gut.  Really felt like I had IBS.  Finally cleared up after a week off the probiotics.  I was using a single strain formulation: Culturelle here in the USA.  L. Rhamosus as I recall.  Had good data on helping with anxiety.

 

The upshot to that was I felt like I took a huge step forward the month after that.  So unwilling to use it again I am sticking with kefir which has 12 strains.  I've come to believe that alot of any one strain seems unnatural, so sticking with foods instead to get my probiotics.  I personally believe it is a huge piece of the puzzle.

 

I am now thinking of trying Kombucha - probiotic tea - but treading so very gently.  Started with a few sips 2 weeks ago.  Once I stabilize again will try some more.

I was thinking of trying culturelle.  I wouldn't take it every day if I did.  I've read good things about it here in other threads.  Did you feel a decrease in anxiety at all?

Thanks that”s reassuring to know. Just feel I should be doing more to recover .Have any of you tried pro biotics ? Got some might try again. Think J’ve got lot general inflammation probably from Covid. Get the throbby sensation soon as I lie in bed from the sinus, had a nail come off, seemed grow back, but gone yellow down side and seem be loosing the new nail now. Apart from the brain damage body falling apart too. Just so frustrating when you get a glimpse of normality and gets snatched away. I haven’t been sleeping well which makes an enormous difference to me. In past reached fir odd rescue dose when that happened but realise it was delaying recovery so no more!

 

Yes Leann I started trying probiotics last November.  I was able to get through 3 weeks of using before I had a paradoxical reaction.  Ended up in bed for days with horrible abdominal cramping, and constant feeling like I had to go to bathroom, but in the end it was more of less normal, just distorted feeling in my gut.  Really felt like I had IBS.  Finally cleared up after a week off the probiotics.  I was using a single strain formulation: Culturelle here in the USA.  L. Rhamosus as I recall.  Had good data on helping with anxiety.

 

The upshot to that was I felt like I took a huge step forward the month after that.  So unwilling to use it again I am sticking with kefir which has 12 strains.  I've come to believe that alot of any one strain seems unnatural, so sticking with foods instead to get my probiotics.  I personally believe it is a huge piece of the puzzle.

 

I am now thinking of trying Kombucha - probiotic tea - but treading so very gently.  Started with a few sips 2 weeks ago.  Once I stabilize again will try some more.

 

 

 

 

 

I might try it for a while, it really helped my IBS in the past. Given up on the 5-2 diet, eating so little gave me bad headaches ans actually put on a pounds one week! Funny I feel lot better when I sleep, hence the addiction to zopiclone. Had couple bad nights why I’m jumpy. Have any of you tried wordle. My son got me onto it, it does get your brain working again. My husband reckons when It’s full moon I’m worse, there is one tomorrow , so maybe something in it. Haven’t started howling yet though😱

Hey Leann one thing I have noticed with the intermittent fasting is that it stresses our bodies.  Supposed to be a good stress (like exercise) but it has sometimes interfered with my sleep.  I looked it up and it appears to be a cause of sleeping less.  So I moderate it and stop and start as I feel I can handle it.  I only do 12 hrs a day most days.  Actually have also found it to be constipating so maybe it is impacting your gut as well?

 

A normal person can handle these "stresses", but for us - just another wave inducer.....Good idea to drop it for a while.  Then maybe you can start up again when you feel better again.  That's what I do.

Thanks that’s useful to know. Have stopped the fasting. I did have busy week this week, had hairdresser come round, Pilates, friend came round fir coffee, then other couple days  went to the retirement groups we belong to. The week before had plumber in the house from 9 am- 6 pm, as had problems with boiler he had trouble sorting it out. Maybe just overload, think unlike “ normal” people maybe we need to pace ourselves. It’s easy if you get few good days think you can do everything you did before. Really hot here so just been chilling in garden this afternoon. Just wish I could go away for a few days ,holidays seem a distant memory, no way could book anything yet. Hope we all come out of the waves soon.🏄🏼🏄🏽‍♂️🏄🏼

Hello to All You Beautiful People! LadyDen thank you so much for checking on me. It looks as though we're all in the same situation. Sounds like you're in waves. I am in the worst wave I've ever been in. With old symptoms coming back and today things have been cycling. I had a brief window very early in the morning actually before I'm ready to get up for the day, so it's there while I'm sleeping and then it goes away with very intense symptoms returning. It's even difficult to distract. Actually some of the symptoms have been pretty scary! That's why I haven't really posted I was waiting to see if things would lighten up and I could say something positive. But, on a positive note I think you're right we're all just trying to fine tune like a radio. My husband used the same analogy. Things are going in and out and old things have come back with a vengeance. Sure hoping we all see some relief soon.

 

Hugs to all! LiveLife

It is so reassuring to hear everyone's stories that reflect my own experience as well.  Thank you LadyD for creating this subtopic thread - it has proven to be my favorite one on the forum!

 

Yesterday also had re-emergence of my old leg neuropathy - it now starts with pins and needles which I never had before so I choose to think of it as starting to fade for good.  Weather has been dreadful for almost 2 weeks - no sun and no vitamin D production.  So I decided to use my Vit D lamp again and I actually felt a tiny bit better after.  Maybe placebo effect?

 

Leann I can so relate to the having a workman in the house as a drain.  Had painters doing the outside of the house - but it lasted 2+ weeks.  Thought it would just be a few days.  The change in routine was such a disruption and not kind to my psyche.  Things that are easy for normal ppl are just too much for us just yet.

 

Happy Sunday to All - May you have a peaceful day 

 

 

Hope you are all doing OK. Sleep better thank goodness. Had to get some flowers for my flower arranging group. Local supermarket I walk to didn’t have any. So had go out in car to one ,double whammy, going in car and it was heaving with people. So had enough of this anxiety. Will have to try more car trips I think, another window soon please, had enough surfing the waves, feel really low today for some reason almost like someone flicked a switch. Having only just experienced having windows, do any of you find it almost feels worse if you get a wave just after a window, like the comparisons between the two makes things feel worse?