20 months 1 week - back in a wave

[[br...]]

 

The swings and roundabouts are rough. I'm trying to hold the thought that the waves are so bad because there is a lot of final 'Fixin ' going on. Like you I am sick and tired of it all ,and have had enough already. :tickedoff: :tickedoff:

[[NY...]]

Hi guys,

 

Yep, I'm in the same boat ... wavy to the end it seems.  I've also been crying more in the past month.  I take that as a good sign, b/c tears are certainly appropriate for what we've been going through.  I think I was just too numb and dissociated before.

 

I had a great window Saturday, and felt what people who are healed speak of - joy, inner peace, clarity, more so than ever in my life.  Then Sunday and today, back in the wave.  I do feel that I'm close to the end.  My husband asked me today how I can smile if I'm feeling so crappy, and I explained to him that it was because "I know I'm healed underneath". 

 

I think we're all getting close.  Hang in there buddies.  Just a little longer.

 

Hugs to all,

WR

 

 

 

[[Kl...]]

Hi guys,

 

Yep, I'm in the same boat ... wavy to the end it seems.  I've also been crying more in the past month.  I take that as a good sign, b/c tears are certainly appropriate for what we've been going through.  I think I was just too numb and dissociated before.

 

I had a great window Saturday, and felt what people who are healed speak of - joy, inner peace, clarity, more so than ever in my life.  Then Sunday and today, back in the wave.  I do feel that I'm close to the end.  My husband asked me today how I can smile if I'm feeling so crappy, and I explained to him that it was because "I know I'm healed underneath". 

 

I think we're all getting close.  Hang in there buddies.  Just a little longer.

 

Hugs to all,

WR

 

I had a day or so that were ok last week, but I'm now 21 months 8 days and things are just as bad if not worse. The intensity of sx has been really bad. I feel like I'm losing my mind, intense anxiety / tingling / short of breath / nausea.. I'm struggling to hold on at the moment :/

[[NY...]]

Sorry it's still so tough, Klungo.  Same here.  Some good breaks, then back to acute-ish hell.  Have the poisioned feeling again today,  along with terrifying POTS sxs.  Despite it all, I still sense that I'm close to the finish line.  I think you are too.  Remember those days of almost complete wellness.  That's coming soon, 24/7/365

 

You gave me a lot of hope by sharing Balyssa's observations about some having a sucky time between months 21 and 24, then healed shortly thereafter.  Let's assume that's what's happening with us, eh? The final push, gritting our teeth, but soon we'll be free.

 

Hugs,

WR

[[Kl...]]

Sorry it's still so tough, Klungo.  Same here.  Some good breaks, then back to acute-ish hell.  Have the poisioned feeling again today,  along with terrifying POTS sxs.  Despite it all, I still sense that I'm close to the finish line.  I think you are too.  Remember those days of almost complete wellness.  That's coming soon, 24/7/365

 

You gave me a lot of hope by sharing Balyssa's observations about some having a sucky time between months 21 and 24, then healed shortly thereafter.  Let's assume that's what's happening with us, eh? The final push, gritting our teeth, but soon we'll be free.

 

Hugs,

WR

 

Was in tears at work it was so intense. Had to come home early.  I feel so unwell :/

 

[[Ba...]]

Sorry it's still so tough, Klungo.  Same here.  Some good breaks, then back to acute-ish hell.  Have the poisioned feeling again today,  along with terrifying POTS sxs.  Despite it all, I still sense that I'm close to the finish line.  I think you are too.  Remember those days of almost complete wellness.  That's coming soon, 24/7/365

 

You gave me a lot of hope by sharing Balyssa's observations about some having a sucky time between months 21 and 24, then healed shortly thereafter.  Let's assume that's what's happening with us, eh? The final push, gritting our teeth, but soon we'll be free.

 

Hugs,

WR

Sure hope it’s true abt the 2 year mark. I am at 23 months tomorrow and have been in acute like symptoms now for quite some time. Bedridden again today with severe head pressure and depression and anxiety fear etc. this sucks!!! And to think this happend because I wanted a sleep study done and the doctor said all I needed was a “completely safe” sleep med called adivan.

[[NY...]]

Sorry it's still so tough, Klungo.  Same here.  Some good breaks, then back to acute-ish hell.  Have the poisioned feeling again today,  along with terrifying POTS sxs.  Despite it all, I still sense that I'm close to the finish line.  I think you are too.  Remember those days of almost complete wellness.  That's coming soon, 24/7/365

 

You gave me a lot of hope by sharing Balyssa's observations about some having a sucky time between months 21 and 24, then healed shortly thereafter.  Let's assume that's what's happening with us, eh? The final push, gritting our teeth, but soon we'll be free.

 

Hugs,

WR

 

Was in tears at work it was so intense. Had to come home early.  I feel so unwell :/

 

:'(  I'm so sorry.  I know it's hard to fathom when we're in it, but the pain really is a sign of healing.  You'll come out of this wave stronger than ever.  Hang in there Klungo. 

[[NY...]]

Sorry it's still so tough, Klungo.  Same here.  Some good breaks, then back to acute-ish hell.  Have the poisioned feeling again today,  along with terrifying POTS sxs.  Despite it all, I still sense that I'm close to the finish line.  I think you are too.  Remember those days of almost complete wellness.  That's coming soon, 24/7/365

 

You gave me a lot of hope by sharing Balyssa's observations about some having a sucky time between months 21 and 24, then healed shortly thereafter.  Let's assume that's what's happening with us, eh? The final push, gritting our teeth, but soon we'll be free.

 

Hugs,

WR

Sure hope it’s true abt the 2 year mark. I am at 23 months tomorrow and have been in acute like symptoms now for quite some time. Bedridden again today with severe head pressure and depression and anxiety fear etc. this sucks!!! And to think this happend because I wanted a sleep study done and the doctor said all I needed was a “completely safe” sleep med called adivan.

 

I know,  it's unbelievably sucky.  I've been bedridden quite a bit this past month.  I can go for a walk, get errands done, but then back to flat on my back. 

 

I had to cancel a camping trip this weekend bc I'm just too sick to even sit up and talk to people.  I went on this same camping trip twice in my first year free.  Actually,  even tho I'm improving with mental symptoms,  the physical has been brutal in year two.  Year three, here we come.  Hoping for a breakthrough for us all soon.  WR

[[Kl...]]

I did a cabin trip at 9.5 months and did alright. I feel disabled now, I mean not completely I go to work and I don't feel well at all.

[[NY...]]

I did a cabin trip at 9.5 months and did alright. I feel disabled now, I mean not completely I go to work and I don't feel well at all.

 

What are the symptoms that cause you the most issues?  For me, it's incredible weakness,  feeling like I'm going to pass out.  Sitting up is really hard until evening,  then I do much better.  Mornings I feel poisioned for the past month, then around 10AM, the weakness starts.  It all improves around 7pm usually.  My sleep has been poorer than usual also for the past month.    Waking up with akasthesia.  Ugh.  Gross, I hate this so much.  Just booked a trip in a month, gone for ten days.  I need to attempt living my life in waves more, but coping with symptoms is hard, especially around people who don't understand or don't give a damn. 

[[Kl...]]

I did a cabin trip at 9.5 months and did alright. I feel disabled now, I mean not completely I go to work and I don't feel well at all.

 

What are the symptoms that cause you the most issues?  For me, it's incredible weakness,  feeling like I'm going to pass out.  Sitting up is really hard until evening,  then I do much better.  Mornings I feel poisioned for the past month, then around 10AM, the weakness starts.  It all improves around 7pm usually.  My sleep has been poorer than usual also for the past month.    Waking up with akasthesia.  Ugh.  Gross, I hate this so much.  Just booked a trip in a month, gone for ten days.  I need to attempt living my life in waves more, but coping with symptoms is hard, especially around people who don't understand or don't give a damn.

 

4am wakes to nerve pain followed by akathisia.

Right now I feel numb, detached, lobomotomized, can't think, weak, moving in slow motion.

 

This morning I had a wave for an hour where I felt like electricity through my body I wanted to cut my skin off.

 

Nausea too, general malaise

[[Kl...]]

Oh yeah and noises giving little jolts in me. Haven't had that since 8 or 9 months off. What the hell. Super sensitive to everything again. And eye muscle spasms, cramping. Awful..

[[Pl...]]

*

[[NY...]]

Oh yeah and noises giving little jolts in me. Haven't had that since 8 or 9 months off. What the hell. Super sensitive to everything again. And eye muscle spasms, cramping. Awful..

 

Ugh, it's so awful :'( :'( :'(.  Hoping a huge window opens for you soon. I'm here of you need to talk.  PM anytime.

 

Hugs,

WR

[[Kl...]]

Oh yeah and noises giving little jolts in me. Haven't had that since 8 or 9 months off. What the hell. Super sensitive to everything again. And eye muscle spasms, cramping. Awful..

 

Ugh, it's so awful :'( :'( :'(.  Hoping a huge window opens for you soon. I'm here of you need to talk.  PM anytime.

 

Hugs,

WR

 

 

 

Thanks, I appreciate it.. 

[[Kl...]]

22 months in 2 days. almost 6 weeks in this wave now. Had some good windows a week ago, since then it been as bad as I have been in a long time. Every morning 4am horrible pain, buzzing, tingling. Then nausea and feeling ill a lot, fatigue.  Some crazy anxiety waves where I feel like I'm dying and it takes everything just to breathe. Can't believe how hard it's gotten now this past 6 weeks.

 

Who has had this happen around 21-22 and got better at 24? Holding on as best I can right now :/

 

Have to see an eye specialist this afternoon for 4-5 hours, I am excited to see if I can get some pain relief but managing 4 hours seems a big ask right now..

[[So...]]

Hang in there Klungo.  I know how hard your recovery has been.  Healing is coming soon for you.

[[Kl...]]

Thanks man, this past 10 days have all been a big nasty wave, intense sx like I haven't had since early months. It's insane that at 22 months I can be suffering this much.