Just now, skamen said:

All the night I was torture by the cortisol spikes, and from the beginning of the morning my brain fog is awful. What a nightmare,

Svetla

Sorry @skamen Yes I feel every bit of your pain. BUT when you have eventually found that balance

Svetla, like me you will lift to 5.5 and RELIEF is immense, it's like being your normal self again.😁

I promise you, YOU WILL WIN.     

Take care,    B.🙏🌷 

16 hours ago, NT1100B said:

to be honest I just can't be arsed.

I am too old for that nonsense. 🤣

2 hours ago, NT1100B said:

spotted it saying room stat off.....So it's a wireless thermostat connected to the internet by wi-fi linked

to the boiler, now this is on the wall separate and is powered by batteries. Still life in them but for some

reason wasn't connecting, so removed the batteries, back in and let it boot up again and reconnect and

bingo, away she goes again. That was 5 hours ago, I have just tried it again now and it's still working.

This is good news! 

16 hours ago, NT1100B said:

no central heating about then. Coal fires was all we had. This was in an old stone

built farm house up in the Cumbrian hills. So I am well used to a cold house, in gales the carpets used to flap with the

wind coming under the door. Ice on the milk jug and dish cloth frozen solid. Yes the good old days, but when you 

hadn't seen nothing else it was just the norm, adapt to the seasons, more clothes on. Aways plenty of wood to burn.

This was how it was at my grandparents. I loved it... While it was still dark I could hear my grandpa stoking the wood stove so we could wake up to a warm house. 

We heated water for the metal tub on the wood stove. ❤️🙏

Sending hugs buddy. 🤗

Good news about the boiler B!
I’m in a little old Welsh crog loft cottage (think 300 year old stone walls, damp and mice) no gas in the village and have a woodburner in the kitchen and one the other end of the cottage in the living room. Not as easy as pressing a button to get the place warm in the morning and coal and wood aren’t cheap but I light the stoves on auto pilot now I’m so used to it and nothing to go wrong as long as the chimneys are swept every year and the odd cracked fire brick gets replaced. Do have an electric blanket though!

Good to hear the 5.5 - I had a lift today for the first time in days from repeated  0-2 to about the same and was able to have a little walk in the sunshine and even better could eat today!

But like you i know the morning will bring the usual panic 😱 

Take a lot of inspiration from you B, you are such an example of strength and perseverance to so many of us.

Take care always 🙏

Edited February 15Feb 15 by Emsy

Sh!tty Mirt 🤨 I have had dry skin/mouth/nose, tinnitus, and had the weight gain too. I think your hip issues probably have something to do  with not being able to drop the weight as much as you’d like. There is/was probably a lot of inflammation in the body and further stress just causes more inflammation and the adrenals to be triggered. 🤗 Big bear hug for you that you can find a more comfortable weight and overall journey. You’ve dealt with one thing after another recently.

I’ve been reading different people talking about loneliness. I had times of feeling this way in an extreme sense. I have had this, especially when I was physically alone, no one home, but also even when I had people around me. It has gotten better overtime on the healing journey but sometimes it creeps up here and there in little bits. But I suspect it’s wave thinking and could also be developmental trauma. I’ve had my fair share of the former and the latter. So bear 🐻 🤗 hugs for everyone and would love one too!

I also grew up with very frugal parents and have learned even as an adult to keep the thermostat low in the winter and higher in the summer and just deal with less. Man, doesn’t it make you really appreciate life so much more when it’s a bit easier? And it will get easier. 

To an 8 or higher/10 day for you, B!

Morning all, back off my 3.15am morning walk 3.6c but feeling warmer but a bit showery. So I awoke after 4 

hours broken sleep feeling more horrible on a 0, worse than the last few days. AS I predicted. It's determined

NOT to let go.🦜🦜🦜🦜. So yes awake at 1am, so another long, long day, it really does p**s you off knowing

no more sleep is going to happen.

 

So anyway  2.15am I thought I will try the heating, and yes working spot on. Now being on a strict budget this is

how I now use it, switching on and off on the boiler itself. So this has maybe being why the room thermostat 

programmer has become disconnected, guessing of course. But yes I am bypassing that by switching on and off

manually. 

 

So another week and I think I have decided the Motorbike has to go, loosing money, but I just have to cut my losses.

I know I am NOT going to be fit for work any time soon, so I just cannot afford to run that and a car with not a 

penny coming in. Just impossible. Yes it grieves me, that Bike was for retirement riding, comfortable and laid back.

Another evil gift from MIRT.

 

So yes I will see what today brings, lifted to a 1 maybe now, Tinnitus was low yesterday but loud as hell again this

morning....well no, after 1 hours sleep last night it had fired up again. The dreaded sleep reset back to living hell.

NEVER fails. So anyway I will see how it goes, I can't see me getting the car back this week somehow, but time

will tell on that one, but I hope greed hasn't got them to take a job on they can't complete. 

Take care ALL,           B.

Morning mate

 

Another sleep reset. So frustrating isn’t it like ground hog day. I hear you on the sleep. We have ZERO control over it. Pwd does what it wants. We have to accept and survive the day. Knowing healing WILL come for us. 
 

Glad your heating is working. Somd kind of gremlin happening there. Sounds like it could be your thermostat as you say. It requires WiFi for connection to be working so every time you turn the boiler off it might disconnect and not reconnect sometimes. Maybe use the thermostat to manually turn the heating on and off. 
 

Breaks my heart you talking about your retirement bike. More dreams shattered by the these evil poisons. But yes you are right I think. Accept the situation I’ve done similar recently with some things. You need the money now. These things can be replaced down the line. Your health is the important thing here. 
 

I don’t know what happens when we sleep but it seems to be key to alot of this. My bb isn’t triggered by food, stress, screen use or lack of water. It’s there after a sleep. Or not. The complex mechanism of sleep damaged by the drugs. I get so angry sometimes. 
 

But our systems are designed to heal. You’re another day closer mate. Lord knows it doesn’t feel like it I know but you are. Hang on tight B you’re doing a great job as ever. 
 

Chippy

9 hours ago, LostinCanada said:

We heated water for the metal tub on the wood stove. ❤️🙏

Sending hugs buddy. 🤗

Thanks @LostinCanada Yes you remember it ALL. All is well when you know nothing else. I know when

I moved to this Bungalow 13 years ago, I thought WHAT NO draughts WOW, I thought this is great...Fitted

carpets as well, no bare stone flags! Yes I thought this is brilliant, no need for any heating much.

So yes 52 years living in a draughty farmhouse does get you used to a few hardships you never forget.

 

Anyway Thanks LIC and I sincerely hope you have lifted again, after your inferior batch of meds. Going through

this lot is anything but easy, making other problems seem small in comparison. Wishing you all the best.

Take care,        B.🤞👍💙

 

6 minutes ago, Chippy said:

But our systems are designed to heal. You’re another day closer mate. Lord knows it doesn’t feel like it I know but you are. Hang on tight B you’re doing a great job as ever. 
 

Chippy

Thanks @Chippy very much appreciated mate. Yes healing is happening but at times it certainly doesn't

feel like it, it feels like dropping back to the beginning again, it really does. So yes the slow slow healing is

the reason for having to make such drastic decisions, ALL because certain authorities REFUSE to accept

the sheer debilitation of PWD....they think we are fine and dandy!!!!!!!!!!!!!!

Take care,            B.🤞

19 minutes ago, Chippy said:

ground hog day

💯 my life…you gotta laugh or you’ll cry. 
 

 

16 minutes ago, NT1100B said:

Going through

this lot is anything but easy, making other problems seem small in comparison. Wishing you all the best.

Thanks NT….think of you every day…..one day this will be in the rear view mirror. ❤️🙏

9 hours ago, Emsy said:

Take a lot of inspiration from you B, you are such an example of strength and perseverance to so many of us.

Take care always 🙏

Edited 8 hours ago by Emsy

Thanks @Emsy very much appreciated you have made me smile, yes 52 years in a 300+ old farmhouse,

very draughty, but was healthy and nice and cool in a hot summer. Bungalow is like an oven. So I am happy

you lifted Emsy, if you keep on hold for long enough this should get even better.🤞 I am just sorry you are

getting the same sleep resets as me. They are nasty. So slowly slowly Em and you should get off the last bit

pain free. But remember, the lower you go, the slower you go, even 0.03mg has a lot more affect than you think.

We are WITH you Emsy, ALL the way.

Take care,       B.🙏🙏🤞 

4 hours ago, namastejen1 said:

To an 8 or higher/10 day for you, B!

Thanks @namastejen1 Well I think you are a bit on the optimistic side there Jen, of course I would

take it, but a 5 will do me for now, I would rather do a long slow permanent lift to be honest but the

sleep reset sends this back down to zero without fail. So it's going to be a VERY painstaking journey

to finally get where I need to be. I hope you are doing OK and not in too much WD trauma. Wishing you

all the very best Jen.

Take care,       B.🙏🤞

Good morning, B. For me also another hellish night with interrupted sleep by the cortisol spikes. Awful. Nausea, anhedonia, brain fog, depression... all these do my life a real ordeal. 

The last week the psychiatrist told me that the acute withdrawal doesn't exist, that the adrenaline rushes are in my head... The psychiatry has to be ereased from the Earth and banished for forever.

As Chippy says, the human body is designed to heal, it is intelligent, so we will hope for better days.

Svetla

3 hours ago, skamen said:

As Chippy says, the human body is designed to heal, it is intelligent, so we will hope for better days.

Svetla

That's right @skamen Keep away from Psychiatrists and Doctors they are mostly arrogant, ignorant 

WD uneducated idiots. Stay close to AR, WE are with you all the way. We will get through this living hell

Svetla and RECOVER, life will be ours again.🤞

Take great care,       B.🤞🙏🙏🌷 

Hi folks, well another very bad morning, dropped back to a 0 and for some reason Akathisia flared up

I was up and down out of my bloody chair a hundred times or more. I have never been a 100% sure it

was that, but no mistaking it this morning, groaning as well, and that's only when I am real BAD.

 

So just started to get some respite 12.30pm, lifting to a 1-2, but by 3pm I was back to 0 again so a miserable

day. I feel 2026 is going to be much worse than last year, What a living hell nightmare, bloody unreal.

Why are such torture pills EVER manufactured ?????      Oh well.....whatever....it's keep plodding I suppose.

Take care all,       B.

I'm glad that the thermostat just needed a reset.

 

A brief period of lifting to a 5.5 is a good sign, but ideally you need a better, longer period of relief than just that for an afternoon.

 

If you body did it once, briefly, it will do it again more consistently in time. How much? Hard to say, and that's really difficult to survive through. I believe it is coming at some point though.

Oh @NT1100B I’m so sorry to read this. You’ve had a lot of stress and upset these passed few weeks too which must be having an impact on your nervous system.

But you had a 7.5 not so long ago I seem to remember. Hang onto that B, keep going we are here with you.

Emma 🙏🤗

2 hours ago, NT1100B said:

Hi folks, well another very bad morning, dropped back to a 0 and for some reason Akathisia flared up

I was up and down out of my bloody chair a hundred times or more. I have never been a 100% sure it

was that, but no mistaking it this morning, groaning as well, and that's only when I am real BAD.

 

So just started to get some respite 12.30pm, lifting to a 1-2, but by 3pm I was back to 0 again so a miserable

day. I feel 2026 is going to be much worse than last year, What a living hell nightmare, bloody unreal.

Why are such torture pills EVER manufactured ?????      Oh well.....whatever....it's keep plodding I suppose.

Take care all,       B.

So very sorry @NT1100B my heart is with you, Akathisia is pure evil.

Stay strong as you are, it will get better. praying for easier days for you! 🙏

I have had that terrible akathisia too and the above stuff that I mentioned. I truly wanted to crawl out of my skin back then. I can have it from time to time, but it is now localized mostly in my thighs--like an overstimulation in the energy system. This is where we make our ATP, I believe. 

 

I know I can be a tad bit optimistic. But will echo Luke in saying that consistent times are coming. It will even out--the brain and body like homeostasis. So maybe we'll shoot for 5-6's on a consistent basis. I would love to see that for you and others who are on a see-saw/teeter totter right now. 

 

I have my moments of WD brain and body, and especially around hormonal shifts. I think keeping my brain on a work routine helps and getting walks, playing light basketball with my teenaged son, and other non-strenuous physical activities helps me feel better. I am still on this bloody Mirt, and my next step down is soon from 0.41mg dose from 0.44mg--probably next week when I am back from helping my mom with foot surgery recovery (3rd one on the same foot). I am okay with this slow taper. I know I will be stressed with being almost 2 hours from home for 4 days and helping her and her elderly dog with all of his requirements too. I love them both, but it is a lot. I should post this on my thread!

 

Take care B! We will all see your success story; it's only a matter of time. 🫶🏼

Thanks ALL, I very much appreciate and welcome your fantastic support, it HELPS.

But here I am at 2.15 am typing, being awake over an hour after 4 hours broken sleep

I am into month 14 after stopping Mirt, and I know I am worse now than ever before, the 

nights with early wake up are brutal, on a 0 now, so zero improvement  there. Yesterday was

truly horrific, and more or less housebound surviving like a hermit.

 

So yes surviving like this is no more than a living hell, how much longer I can keep this up I don't

know. The problem is not being well enough to conduct myself in public, not mentally fit enough

to handle normal life's obstacles, as in not even up to going to the jobcentre, or any other place

to sort out life's problems. The mental damage these drugs do is unprecedented, I just seem to 

get worse, yes I have had brief lifts in an afternoon on a very few, 3 maybe but this has been a wave

since 27th of November last year, and it's still going with the same intensity.

 

Now I know this is the wave brain talking, but when I am more or less permanently stuck in it, I cannot

get important things seen too while being in such a hopeless mentally fragile state. This truly is the

nightmare from hell, with NO solution other than time, but a lot of life's problems  CAN'T wait for that

healing time, they are ON ME NOW. So yes that's the nightmare.

Take care,         B.

 

30 minutes ago, NT1100B said:

problem is not being well enough to conduct myself in public, not mentally fit enough

to handle normal life's obstacles, as in not even up to going to the jobcentre, or any other place

This is so brutal. I feel you. I want to go ballistic when someone won’t move over on the sidewalk…. during my “relaxing “ daily walk….i am wound so tight. I couldn’t imagine having to function at a job. Interacting with people is more than I can handle most of the time. 
I am so thankful for your raw honesty…this is a safe place where we are understood. 
It will get better my friend…it has too…❤️🙏

It's about 9:25pm over here and I just saw your post. I am about to call it a night but wanted to say hey. I know this is a bad go for you right now. Trust me when I say it will get better. I have been in this position as it got worse and worse for me in 2013. My situation was different with polydrugged and CTs and you are off of everything. But these damn things screw up all of us despite the Rx status. It was up and down for me on and off and on Rx again for quite a few years. And my saga still continues but at least with just one for several years. 

I know right now, it does not feel like you will ever get out of this. But it is a drop in the bucket compared to all the years you have lived and hopefully lived contentedly. You are worth more than the wave thinking has you thinking. Your thoughts are worth more. Your love of life is worth more. You get the idea. Sending you heart-felt care that you can ease into this Tuesday/new day and you lift. 

God bless you B. ♥️

Hi @LostinCanada - you live where a friend of mine lives on the West coast. Have a great night...nice bumping into you again!

35 minutes ago, LostinCanada said:

I couldn’t imagine having to function at a job. Interacting with people is more than I can handle most of the time. 
I am so thankful for your raw honesty…this is a safe place where we are understood. 
It will get better my friend…it has too…❤️🙏

Thanks a million @LostinCanada You understand perfectly, SAME BOAT. Very sorry that you have been landed

in it LIC, it's beyond our comprehension. But we are in it, and ONLY time can set us free. As you know though life's

events crop up unexpectedly, and dealing with such in a vicious wave is almost impossible. The things we would

normally deal with without a second thought, become an absolute mega stress ordeal.

 

I have had to cancel Dentist check up, Could not face a Doctor, to sort out something other than Anxiety on a sick

note. I am still signed off. But Anxiety isn't recognized!!!!!! I couldn't face a funeral of a guy I had known for 55 years.

Devastating. Now up to now I have been lucky to get shopping done once a week very early morning, first in as being

quiet. But a lot of other things are just getting put off. I hope you are doing better LIC, thanks again for showing I am

not alone in this living hell.   God Bless.

Take great care, and please stay safe.          B.🙏🙏💙

Thanks for all your support @NT1100B… I appreciate you showing up on here.

9 minutes ago, NT1100B said:

had to cancel Dentist check up,

Me too…I was supposed to go Wednesday but I was dealing with all these symptoms and thought I just can’t add the stress. 
I am doing better as long as I don’t upset the status quo…which is in truth…doing nothing but the minimum.

15 minutes ago, NT1100B said:

couldn't face a funeral of a guy I had known for 55 years.

Sorry to hear.

17 minutes ago, NT1100B said:

God Bless.

Take great care, and please stay safe. 

Right back at you.
 

One day closer to healing. ❤️🙏

1 hour ago, NT1100B said:

Thanks ALL, I very much appreciate and welcome your fantastic support, it HELPS.

But here I am at 2.15 am typing, being awake over an hour after 4 hours broken sleep

I am into month 14 after stopping Mirt, and I know I am worse now than ever before, the 

nights with early wake up are brutal, on a 0 now, so zero improvement  there. Yesterday was

truly horrific, and more or less housebound surviving like a hermit.

Oh hell B I’ve only just seen your post from last night. This is NOT good. We need to see much much better days for you. 😞

 

1 hour ago, NT1100B said:

So yes surviving like this is no more than a living hell, how much longer I can keep this up I don't

know. The problem is not being well enough to conduct myself in public, not mentally fit enough

to handle normal life's obstacles, as in not even up to going to the jobcentre, or any other place

to sort out life's problems. The mental damage these drugs do is unprecedented, I just seem to 

get worse, yes I have had brief lifts in an afternoon on a very few, 3 maybe but this has been a wave

since 27th of November last year, and it's still going with the same intensity.

You have the strength to get through this. It’s not fair you have to find it, but I know you can.

I understand the frustration of missing life’s events but forgive yourself it’s not something you can help or should worry about.
You have tackled the VITAL things with such courage and it’s all that can be  asked of you right now. 
 

1 hour ago, NT1100B said:

Now I know this is the wave brain talking, but when I am more or less permanently stuck in it, I cannot

get important things seen too while being in such a hopeless mentally fragile state. This truly is the

nightmare from hell, with NO solution other than time, but a lot of life's problems  CAN'T wait for that

healing time, they are ON ME NOW. So yes that's the nightmare.

Take care,         B.

Don’t listen to the wave brain. This isn’t permanent just takes a long time to pass and it’s common for things to be worse before they get better. But better they WILL get better!

 

Just keep that incredible plodding mindset going B. 
 

YOUVE GOT THIS WE ARE ALL BEHIND YOU! 👊