12-18 month support

[[Si...]]

No worries marj, we all feel this way a lot. It helps to write it out and I say whine all you need to. I know I've done more than my fair share of whining, bitching, screaming and crying.

[[No...]]

Hi Marj ... we do what we can as we can ... can't ask for anything more ... or at least they better not ask for anything more ...

 

We look after those close to us when they need support ... anything else is probably a bonus ...

 

Hope you have a good walk ...

[[No...]]

Hi Siggy ... sounds like you are in a bit mellower place ... gosh, the sleep sure helps ... hope you have a quiet, restful weekend ... 

[[No...]]

Good Afternoon ...

 

Still doing the hard wave stuff ... and ... I got out for a walk early this morning ... then went to the market for veggies ... then went to the library to pick of my stash ... and made a loaf of bread ...

 

So ... I am not having a stroke ... I am not having heart failure ... and I am probably not suffering from "lame duck disease" ... (I looked, there is no such thing in Google ... but it is good I don't have it anyway) ...

 

Got the belly bloat big time ... and the vice grip head pressure with stuffed ears ... and lots of perceptual boatiness ... just like acute ...

 

Guess I won the lottery ... I get an encore wave ... been going for four days or so ... should probably break soon ... or not ...

 

Hope we all get a break and have a good weekend ... 

 

 

[[Si...]]

Sorry you're still getting hit Nova. I guess you made it out for a little bit. Yes the sleep helps immensely. I am a bit more mellow now. I'm still in a wave that started two weeks ago, but it's severity isn't as bad as when it hit. The head pressure is one of the worst things! My top thee worst symptoms are the head pressure, insomnia and depression. If I could get rid of thise three, I'd be on my way to being 100%. Enjoy your veggies!

[[BJ...]]

It is extremely helpful to get that reassurance from people ahead of us in their recoveries.  It's completely mental and counteracting the doubt is integral.  It is the doubt that really makes accepting this process difficult.  When I read that others were slammed in a similar way this far out, or that they had a flurry of symptom spikes that eventually abated, it makes me feel less like I'm going out of my mind.  This can be such a lonely process.  About all we can do is endure and calm our minds as best as we can, I guess.  Talk about the worst roller coaster ride ever.

 

Here's to healing.

[[Fi...]]

BJ--rollercoaster is the word.  I was hit with an unprecedented wave of fatigue at 15 months.  Only when I came out of that did I develop new symptoms such as racing heart and inner vibrations, a fresh round of eczema.  The roller coast continued with these and other symptoms, gradually easing in intensity and now I'm well.  You will be too.  Nothing you can do but hang on for the ride and believe the stories of people who got off at the other end and are just staggering around, a bit dizzy, with their biggest problems being readjustment to the real world. 

[[Sk...]]

Hello, everyone. 

 

seems like we're all in the same place.  crazy bad walks, bursting into tears, fatigue, bland diets!

 

I will report I have had two good days, better days.  not windows.  I don't get that.  feeling significantly better, very few mental symptoms.  still falling asleep 4-5 a.m., sleeping until 3.  that's 10 hours.  waking up as close to normal as I've seen so far.  feeling droopy, a little fogged out, but able to do things around the house that have defeated me since this storm started.  And then around 6 pm I'm seeing a small window, to go out and ride my bike.  I feel a little tired, but it's a tired I can push through.  We all know the difference.  there's tired that you def don't push through.

 

when I get that 'good time' in the evening, I could clean, I could go food shopping. no.  i'm going to ride a bike or go to a show.  otherwise I can't stand this misery. 

 

I'm wondering if the Immunocal and Corvalen is helping.  I can't tell.  I do feel more 'sound of mind and body'?  could just be feeling better. 

 

I always hesitate to post when feeling better if others are suffering.  but I think we should post better days, as well.

 

feel better, everyone. 

 

Sue, please don't be afraid to post about good days.

 

I wouldn't be here at 21 months, if others hadn't posted good days to look forward to.

 

More t han a year ago, Life4me posted about hearing a song from another car's radio and dancing and feeling well. That post gave me so much energy and motivation.

 

Things would have been so much more painful without posts like these to build my dreams and hopes on. 

[[Sk...]]

Thanks everyone for the nice words. Some days the depression goes away and some days it decides it wants to beat me down. I know the low vit d I have can also contribute to depression. I'm now in my second week of prescription vit d. It can take a few months to get the levels back to normal. I was afraid I wouldn't sleep last night, but ended up being ok. Just woke up a bunch of times. We baked a small turkey breast the other night, so I've been eating that for a few days.

 

BJ it does seem like a lot of us get hit around this 15 / 16 month mark. Just try and take it easy this weekend.

 

Siggy, depression on waking up, depression that suddenly lifts, I know how you feel, it's awful, overwhelming.

 

I don't think it's the  Vit D, though.

 

By all means work on it, we need it very much in wd, but my impression is that these things are part of wd, they will happen, more or less, of course, no matter what.

 

 

[[Sk...]]

This is by far the worst I've felt since acute here in Month 15.  Anxiety is through the roof into another galaxy.  I've got my breathing somewhat managed.  I don't know where this has come from.  Ever since taking the Zyrtec for three days straight I haven't been right.  Has anyone else had a similar experience with horrific anxiety coming out of nowhere this far out?  It's been well over a year since I've felt this bad.  I'm praying this resolves soon.

 

 

....BJ.....so sorry....believe me, this will pass....and yes ...I had a tsunami wave in May...so at about month 16/17....I felt like I had been thrown right back into intense acute. It turned my world upside down and sent me running  to at least 3 doctor's appointments. My anxiety was 24/7....my health fears multiplied by 100, d/r returned, dizziness returned , agoraphobia came back, and I picked up a brand new sx....reflux.....Things are so so much better now at month 21...For me it was a 3 month wave, having said that the entire 3 months was not as intense or as constant as it was when it hit....It sems thatany of us get hit hit with one last horrible wave somewhere between months 15 and 18 ...give or take. Keep your eye on month 18 ...there seems to be a shift somewhere around that timeframe....sx are still present , but breaks come along a little more often, things feel like they are healing and some sx drop off ..  ( they might come back from time to time)... Around month 19/20 many of my sx dropped away or lessened considerably....but I was left with a couple of persistent big sx....health fear  and anxiety.  And I picked up the said reflux..  so for me, it almost feels like a completely different process.  The big change for me is knowing without a doubt that healing is happening and I will get my life back....even though I still have sx... In month 20 I went to 2 full days of wedding events for my daughter's wedding and I was lucky enough to be in a window 90% of of that time

.....You are in a tough place right now..  it won't last. The entire goal is to survive until it passes. Try not to fight it or push too hard through it..  ...It gets better again.....Wishing you some sunbreaks .....coo

 

 

Hi everyone,

 

Firstly I must say this post helped me a lot Coop, even though it was for BJames. It means so much to have people who are further ahead to give some insight to what is happening. If I'm not making sense it's because I am not having an 'efffortless mind day'.

 

I have not had much time to post this week as I've been busy (struggling) at work and then mid week had some 1st year exam results stress with my daughter. All really good apart from one that we are having a remark because it doesn't seem right. I had to take a days leave on thursday as she was distraught and needed her Mum. I think all this has taken it's toll on me now as all the worry about her is so magnified. She is fine now but it's not that easy when you're in wd. My anxiety today is bad and I feel like I want to cry in a corner. This is just crazy; so many parents go through this and all I want to do is be a normal Mum and be strong and supportive to my kid instead of feeling like normal life situations just knock me for six, wipe me out, sending my mind to scary places.

 

I'm so sorry you are suffering too Drew and don't blame you for taking a break. I do think this is a critical time in recovery and just to say again that Bristol TP has many,many people they support at this stage 15,16,17 months - all having a shit shower with full force.

 

Nova, I read you are up and down, however you continue to write such inspiring words amongst your suffering. Also lovely to read you were supporting your wife too though her procedure. You are getting there 

 

I am going to go for a crappy walk before I go food shopping. Either that or spend the whole day in my room surviving because I'm too fatigued to do the normal household chores that we would just do without effort. I do know for now I CAN put one foot in front of the other and just ignore other people and focus on the nature.

 

Sorry for the whiny post 

 

Marj, the normal things of life, seem to be the hardest ones to do in Wd. It's maddening and infuriating !

 

I am sorry you are going through so much, you are just trying to be a good mom and you have to contend with this.

 

Hope you walk helps a little.

[[Sw...]]

Would like to officially join the group, will read posts at a later date.  Thought I be done at 6 months.  Then 12 months.  Well, guess not.  Right now my anxiety is "through the roof" partially withdrawal and partially situational.  Been in hibernation mode all day which I have not done in six months. 

[[No...]]

Hi Sweet Pea ... I know that kind of anxiety ... I have been going through it again for the last four days ... it has been a while since I have been this rough with it ... waxing and waning all day ...

 

And yes, hibernation mode ... sometimes it is referred to as staying low and slow ...

 

Another day in paradise ... hang on ... this stuff always passes ... 

[[No...]]

Hi Sky ... hope you are having a quiet weekend ... I know I am not ... 

[[dr...]]

Just on here for a sec with a quick update.. My wave has lessened a lot.  No more palps, nausea, bad head pain, etc....

 

I also only took the propronolol for one day.  I found taking anything when in a wave makes me just focus internally on my symptoms more. It made me even worse.  I've made close to 16 months without anything and I'm going to push forward for now.  That last wave got so bad I was desperate.  grasping for a lifeline. 

 

I'm practicing constant distraction.  Trying to leave no idle time for my recovery brain to focus on the symptoms of healing.  Model battleships, cooking, reading, baths, meditating....  With that being said I'm continuing my break from here but I did want to let you know I'm okay.  I just need to get away from this being the overwhelming issue of my life. Easier said then done but I got to give it a shot.

 

Wishing good days on everyone here.  :smitten:

[[Co...]]

Drew..  so good to know that all is well...in spite of the wavy anxiety. Distraction is the only thing that really helps me through a wave....but I have been in that 0lace of desperation about a gazillion times....we just need and want some relief...

....thinking of you friend....how long do you have to wait for the headache specialist?........thanks for dropping by for an update.....Wishing you a good weekend.....coop

[[Si...]]

Thanks everyone for the nice words. Some days the depression goes away and some days it decides it wants to beat me down. I know the low vit d I have can also contribute to depression. I'm now in my second week of prescription vit d. It can take a few months to get the levels back to normal. I was afraid I wouldn't sleep last night, but ended up being ok. Just woke up a bunch of times. We baked a small turkey breast the other night, so I've been eating that for a few days.

 

BJ it does seem like a lot of us get hit around this 15 / 16 month mark. Just try and take it easy this weekend.

 

 

 

Siggy, depression on waking up, depression that suddenly lifts, I know how you feel, it's awful, overwhelming.

 

I don't think it's the  Vit D, though.

 

By all means work on it, we need it very much in wd, but my impression is that these things are part of wd, they will happen, more or less, of course, no matter what.

Thanks Sky, yes I guess I always want to find some other cause for all the misery. Went out tomdo a bunch of errands with my wife so I wouldn't be inside all day. I went from feeling bad to really bad. Im in recovery mode now. Part of it may be the heat and not drinking enough water like I normally. Of course it's w/d compounded by these. I use to be pretty tough when it was hot utside. I even woreds in a paper mill for a while. It was about 120 degrees in there and I had to wear pants, rubber boots and a hard hat

[[Co...]]

Would like to officially join the group, will read posts at a later date.  Thought I be done at 6 months.  Then 12 months.  Well, guess not.  Right now my anxiety is "through the roof" partially withdrawal and partially situational.  Been in hibernation mode all day which I have not done in six months.

 

....Sweet Pea.....welcome to hotel W/D.. Year Two....or Beulah's Tropical Healing Abbey as we fondly refer to the second year of healing here. You will fit right in. I think every single one of us thought 6 months would do it, after all what illness or condition or discontinuing of a medication go beyond 6 months. I remember thinking 6 months seemed like " a long time" to me....Fortunately I have had this wonderful band of friends to go the distance with me. Some 9f us have been a little group since month 6..  Come in and be one of us.

......It is disheartening to get to year one and not be done.  Ironically I have seen big progress in year 2 ( most of it from month 18 and on), .. .and some challenges I didn't have in the first 18 months. At 21 months it is so so much better, but not quite there yet. ....Distraction and this group are the 2 things that got me this far. ...This wont last forever, this is not " just who you are", most likely you won't be in w/d for years on end....you will get your life back.....you will get your life back... you will get your life back.... Take each day as it comes because there is absolutely no way to predict what the next day will be. Remember healing is circular not linear .  .

.....Wishing you sunbreaks .....copp

[[No...]]

Drew ... be well ... and distraction certainly is useful ... 

[[Si...]]

Welcome to the crew sweet pea. I'm relatively new here too. I came along a few months ago. You'll find a lot of nice helpful people here.

 

Glad you're feeling a little better drew.

[[Co...]]

Sky.  Keep those hopes and dreams going.  We are getting closer every day.  I think your posts are showing so much improvement in the last 6 weeks.  ...onward....we are getting our lives back. ...coop

[[Co...]]

Good Afternoon ...

 

Still doing the hard wave stuff ... and ... I got out for a walk early this morning ... then went to the market for veggies ... then went to the library to pick of my stash ... and made a loaf of bread ...

 

So ... I am not having a stroke ... I am not having heart failure ... and I am probably not suffering from "lame duck disease" ... (I looked, there is no such thing in Google ... but it is good I don't have it anyway) ...

 

Got the belly bloat big time ... and the vice grip head pressure with stuffed ears ... and lots of perceptual boatiness ... just like acute ...

 

Guess I won the lottery ... I get an encore wave ... been going for four days or so ... should probably break soon ... or not ...

 

Hope we all get a break and have a good weekend ... 

 

....Nova,...seems like benzo wants to leave us with parting shots lest we forget our stint in acute. 

  .I am trying to take the same approach unless I am so flattened by fatigue or belly pain that I can't function. I am doing the things I need and want to do ....sx and all. I have to say that my sx are not as intense or as scary as they were in acute and I know them well enough that I can function with them. ...and I know when I cant. .. This has only been possible in the last few months so I am calling it progress. ...

....Yep...head stuff, I had a revisit of temple zaps and wibble wobbles yesterday, haven't had that for a long time.  Ears also come and go painful.  Like you, no stroke, no heart attack, no falling down from dizziness.  All w/d... but still takes a lot of distraction to manage when they hit...

......Sounds like you had a good day with and in spite of sx... I think that's mostly where I reside now.....doing ok, functioning and sometimes really enjoying my life... with and in spite of sx.  Takes some effort ( unless it's an Effortless Mind day), but so so much better than last summer. 

....Enjoy the bread......enjoy the books.....coop

[[Co...]]

Marj.  You have earned so many whine and cry points. I know I could not do this and be a present parent. Supporting your daughter, shopping, doing house chores that won't get done except for you.....and working.....Whine on girl, I am listening ...and you have my huge respect. .....Spot on ....going for a "crappy" walk and not giving a damn about what anyone thinks. I call that survival.  Every day you are closer Marj.  So glad you went on that walk, even if it was crappy it was away by yourself ....away from your house....away from the grocery. 

....I hope you caught a break...and I am wishing you a sunbreak.  coop

[[be...]]

Green- A Big Congrats to you!!  21 months .

You are sounding good.

[[be...]]

Welcome sweet pea. Yes, as coop said, The Healing Tropical Abbey..it's open 24 hours for healing.

Lots of lavender tea and comfy blankets here...and a lot of people to laugh and cry with, support and encourage in volumes, always lots of hugs and some food talk.

We share and we care. Hugs.

 

 

 

 

[[Co...]]

Green....CONGRATULATIONS. .♡♡♡....You have survived 21 months of the March Through Hell.. .and helped all of us while you were at it... That is reason...and more to celebrate...and I am celebrating YOU.  Thank you for being here with and for us all the way.  You have been so much support to me..  ..How the heck did we make it through 21 months?.    Love to you dear friend.  coop