Hi all, well I have stayed on a 3 for the rest of the afternoon, stomach was very bad with nausea this morning.

I had 1 small slice of toast before taking my car in for recall, at 5.45am, then didn't eat anything else until 10.45am

Now I was back home then, and had lifted to the 3, and have been eating more than I should since. Still MIRT hunger??????

 

But feeling not too bad, dull dead eyes which I think is lack of sleep, and they have been like that all day. Now I 

can fall asleep with ease, but the problem has ALWAYS been staying asleep. A LOT more time needed. So yes

it's no doubt going to be the same sleep reset again tonight. So I am still astonished how I accomplished my 100 mile

round trip, with my car recall, in the horrible state I was in, almost like an invisible force from within.

 

So I am more than pleased this got done, and even  with the mayhem of lots of motorway roadworks, and traffic going

as well as feeling pwd  horrible, it just could not have gone smother, not ONE problem. Amazing.

Oh well back to gently plodding along.

Take great care all,             B.🤞💪👍 

10 hours ago, NT1100B said:

I am trying, but in waves it's very hard to feel of any use at all.

Your indomitable spirit is of GREAT use to many of us, B. I know that's hard for you to realize, but to see someone striving to overcome these difficulties with such perseverance is a huge uplift to all those who follow your journey. Please don't forget that.

 

And I'm so proud of you for conquering your lousy symptoms early this morning to just get the car job done. Talk about perseverance! Well done.

 

I prayed for you and thought about your nightly or should I say morning walks as I walked my half hour home tonight in the dark and cold (19 deg F, -7 deg C). You are not alone. Here's a photo as I am almost home.

Jamie ❣️🌻

36 minutes ago, gardengirl2 said:

I prayed for you and thought about your nightly or should I say morning walks as I walked my half hour home tonight in the dark and cold (19 deg F, -7 deg C). You are not alone. Here's a photo as I am almost home.

Jamie ❣️🌻

Thanks @gardengirl2 That's incredibly kind of you, very much appreciated, looks cold but nice in your picture,

quiet and peaceful looking. I am so pleased you feel my contributions are of some help, this whole experience on

SA and here a AR are helping me dramatically, they and ALL it's members and staff have been a LIFESAVER.

Take great care Jamie and God Bless.         B.🤞💙

1 hour ago, gardengirl2 said:

Here's a photo as I am almost home.

Looks like a lovely area @gardengirl2girl.  -7 c cold! 🥶 

Morning all, Back off my 4am walk 5c but a bit blustery this morning making it feel cooler, mind you sweating

by the time I got home. So I awoke on a 0 in terror, Cortisol or something, and thought oh NO I thought the

loathsome wave feeling was going to envelope me. But no, as I watched some Youtube, my mood slowly lifted

to a 2. So sleep was hard to track, I think I got 4-5 hours broken, I fell asleep before I was meant to, but can't

remember the time exactly, awoke 22.10pm  then another sleep after 23.30 so yes about what I say.

 

So Motorcycle is the next what do I do? I can't afford to run it under present circumstances, but with a clear mind

options are available? But it has GOT to be MOTd this month, so would need booking in shortly. Now I can sell It,

and buyer will MOT it. BUT it's out of motorcycle season.....still winter months, meaning I will only get a knock down

price. Hmmmmm  Think, think, think. So yes my recovery I am guessing is a long long way off, it might be another

year before I am out of this living nightmare, so yes a battered mind cannot juggle too much vehicle paperwork,

and tax, insurance, tyres, maintenance.....get's on top of a PWD mind. You Know what I mean? 

 

So yes decisions, decisions, is it getting older or pwd that is confusing my mind? Hell these bloody drugs cause

misery in every which way they can. OH well my mind is battered thinking about it, so I am going back to plodding

for now, I will SEE how the day pans out, Catch you later.

Take care all,       B.🤞 

2 minutes ago, NT1100B said:

Morning all, Back off my 4am walk 5c but a bit blustery this morning making it feel cooler, mind you sweating

by the time I got home. So I awoke on a 0 in terror, Cortisol or something, and thought oh NO I thought the

loathsome wave feeling was going to envelope me. But no, as I watched some Youtube, my mood slowly lifted

to a 2. So sleep was hard to track, I think I got 4-5 hours broken, I fell asleep before I was meant to, but can't

remember the time exactly, awoke 22.10pm  then another sleep after 23.30 so yes about what I say.

Morning B

 

That sounds like a very frightening experience. I’m VERY glad you’ve lifted a little to a 2. It’s good you got a bit more sleep than you sometimes do. I know what you mean about it being hard to track. It’s a puzzle sometimes isn’t it. 
 

4 minutes ago, NT1100B said:

So Motorcycle is the next what do I do?

This is a tricky one. 
 

You can obviously SORN it for the minute. But I’m thinking releasing some funds is what you might be thinking. 🤔 

 

Like you said bad time to sell. Needs an MOT and a March sale date at least for max price. Like you said the winter doesn’t make people look for bikes. 
 

Tricky. Guess you’ve gotta weigh up what works for you based on your circumstances and how able you feel to do these things. Mots, advertising, dealing with potential buyers and so on. 
 

You’ll sort it. You always do. PWD can’t beat you mate this wont for sure!👍

2 minutes ago, Chippy said:

You’ll sort it. You always do. PWD can’t beat you mate this wont for sure!👍

Thanks for the optimism @Chippy VERY much appreciated, you are right, we have been living under

the most torturous conditions imaginable for over a year and survived, so as you say, it will get SORTED

one way or another. I conducted myself under extreme conditions yesterday and survived. I can do it AGAIN.

Take care,         B.🤞 

11 minutes ago, NT1100B said:

conducted myself under extreme conditions yesterday and survived. I can do it AGAIN.

100%

Yes so just skimming through my SA thread, this last nasty wave started 27th Nov last year, so I have been

in it about 71 days now. Lifted a bit now to a 5 so keeping 🤞. Now it's very easy to see where the real bad

starts by the fewer or zero icons 👍 I leave on a post. Those highlight the mood.

 

Now I think the last time I was on the Motorbike was mid October, now this is not the normal me. I always 

used to get out every week on it weather permitting. So yes healing is very slow, and how much longer this

wave is going to last is impossible to guess. But I do know there's still a lot more healing to do. Just having

a bit of a ramble at the moment,    (  MIRT madness  )         Time will eventually heal.

Take care all,           B.🤞💪🤔 

24 minutes ago, NT1100B said:

Lifted a bit now to a 5 so keeping 🤞

Lovin the 5 B! 👍

Hi all, well lifted gradually to a 5 today, so finally getting a bit of relief from this 70 day+ wave from hell.

Now whether or not that get's reset tonight, I will say yes it will. This has happened SO many times, get

a decent day, go to sleep and bang, reset back to 0-1. Cruel stuff. So yes it's good to lift as we can see

improvement....healing happening, now I have still a long way to go, and a lot of things to sort out with 

the chaos PWD causes to our lives. BUT for now it's keep on plodding.🤞

Take care all,         B.🤞💪

This is really good to see @NT1100B and shows that your nervous system CAN and WILL regulate and I’m crossing everything for you that is the end of this awful wave for you and things will continue to improve.

Take care my friend and keep keeping on ✊

22 hours ago, Chippy said:

-7 c cold! 🥶 

That's nothing, @Chippy. It was -28 deg C the other night. And I'm a Florida gal! ❄️

10 minutes ago, gardengirl2 said:

That's nothing, @Chippy. It was -28 deg C the other night. And I'm a Florida gal! ❄️

🤯 🥶 oh wow you must have been in shock! I love the mild uk climate particularly in the north. Goldilocks not too hot not too cold! 🤣

Morning and thanks all, Back of my 4.30am walk, a bit wet but not enough for brolly, I think it would be

now though listening to it. So awoke on a 0 in a living hell again, SI among the negative thoughts this morning.

I was p****d off with loosing a sick pay appeal yesterday, with them FAILING to recognize PWD!!!!!!!!!!!!!!!

 

Hell I would like to see how THEY coped with the living HELL we ALL have gone through. 3 hours broken sleep

last night....This is almost coming into month 14 OFF, yesterday was a slight reprieve of this 70 days and counting

wave from hell. The WORST one yet. I had even given the reference of Mark Horowitz, obviously they never even                                  checked him out. So yes authorities make your blood boil, the lack of recognition of a very dangerous frame of

mind we are put in with PWDs, and the genuine length of time healing, just Bugs the hell out of us.

 

Anyway, rant over I have lifted to a 1 and I know I will be grounded today, nausea not too bad at the minute, Tinnitus

fairly low, but just feeling very flat, malaise, Anhedonia, zero motivation, I think SI has died down thank god, was

strong on awakening. So yes it's back to gentle plodding, and debating the future of my Motorbike??????

Take care all,          B.🤞  

On 2/4/2026 at 8:02 PM, gardengirl2 said:

 

I prayed for you and thought about your nightly or should I say morning walks as I walked my half hour home tonight in the dark and cold (19 deg F, -7 deg C). You are not alone.

@gardengirl2 and @NT1100B, I was feeling sorry for both of you describing these early morning cold walks you take. But from gardengirl's photo it does look pretty and peaceful! You gave have the cold though, this Cali girl would get frostbite below 50 degrees...

 

12 hours ago, NT1100B said:

Hi all, well lifted gradually to a 5 today, so finally getting a bit of relief from this 70 day+ wave from hell.

Now whether or not that get's reset tonight, I will say yes it will. This has happened SO many times, get

a decent day, go to sleep and bang, reset back to 0-1. Cruel stuff

B, this is cruel stuff. Also some positive stuff going on with some afternoon lifts happening. These are good signs, and prayers your way this keeps trending up! Time for those 0 numbers to start going away!

 

On 2/4/2026 at 9:25 PM, NT1100B said:

So Motorcycle is the next what do I do? I can't afford to run it under present circumstances, but with a clear mind

options are available?

I agree with @Chippy, you'll know what to do when the time is right B. I'm just glad you're keeping Percy!🦜😄 I still think you could make some money off his advocacy and make him Poster Parrot against gaslighting doctors. 🤔

Hi B

I came on to say you aren’t alone, im approaching 12 months off and this wave is now around 16 days (not a patch on yours I know!) but honestly its been absolutely awful.

 

some very old Symtoms returning, sweating, shaking and sleep down to 2 hours last night.  My family went out last night and I wailed and howled and sobbed for 2 hours straight and pleaded with God. I haven’t done that for many many weeks, months even, so it does feel like going backwards but we HAVE to hope recovery is coming after such hard waves….

 

im certain im vitamin D deficient, this won’t help.  Could you be too?? I know I probably am as mine was just above the cut off in August last summer on a blood test, it’s hardly been sunny since then! I eat two eggs a day but they say that’s not enough so I think that’s going to impact our mood. Ok so it won’t cause this horrific withdrawal, but it may just take the edge off if it was bumped up. I can’t take supplements sadly.

 

I think the lift yesterday is very very positive. It shows that you can feel better 🙏 

I have SI when I feel like this too, and it’s very hard to be hopeful.

im keeping a daily gratitude list and trying to do visualisation but it’s hard when my brains racing and I feel like there’s a boulder on my chest, a very common debilitating feeling for me.

 

sending all the love and light 

when April rolls around try to get out for walks in the middle of the day when your vitamin d can be bumped up.  It may help a little 🤏 

 

Cash is an issue my end but I do have my husband but it’s still tight. I have two young kids to pay for and we’ve lost my whole income. I’m dog walking a bit and doing my school job that brings in £150 a months 🤣🤣🤣 not going to pay for much! I had to miss the last 2 days I couldn’t contain the anxiety and tears so not ideal! 
 

I don’t scroll on here anymore but like to come on and see how people are doing.

hoping the next time I come on you’ve had a small glimmer.

love Rosie x 

8 hours ago, Emsy said:

Take care my friend and keep keeping on ✊

Thanks @Emsy VERY much appreciated.

Well the night has gone with my 3 hours broken sleep, and awoke in a living hell like I predicted.

But like you said Emsy, yesterday was proof of healing happening, it just hurts so much to have

that sleep reset knocking one back EVERY night. It sure knows how to torture. But remember my

wave mind is typing these thoughts out now.  Last night was my window MIND. Totally different

thinking, in a window ALL negative thoughts evaporate, HONESTLY....they just disappear like magic.

So yes Emsy I am keeping my 🤞that I LIFT again today. I hope you are getting closer to your next

HUGE window, please take it slow and easy, and please stay safe. God bless.

Take care,         B.🙏🙏🤞

19 minutes ago, NT1100B said:

I was p****d off with loosing a sick pay appeal yesterday, with them FAILING to recognize PWD!!!!!!!!!!!!!!!

 

Hell I would like to see how THEY coped with the living HELL we ALL have gone through

WTF??? 1000 parrots to them.🦜🦜🦜🦜I thought the UK was ahead of the US in this, but looks like not so! WD is not recognized in the US, you have to be "labeled" with MDD or GAD. Sorry it's the same scenario. Absolutely mind-boggling.

Well B you’re not short of support on here today are you! Can’t get in the door to say hello! Are you signing autographs now? 🤣

 

Sorry for the nasty day again. You keep getting things thrown at you don’t you. Good you’ve lifted a bit and the SI has dropped back. 
 

You’re such an amazing example to all on here I think you already give much strength to others. 
 

Yes a bit of a predicament the bike situation but as I said you’ll know what to do. You always do. 
 

Hope you lift throughout the day my friend. 

 

Chippy

6 minutes ago, HopePerseveres2.0 said:

you could make some money off his advocacy and make him Poster Parrot against gaslighting doctors. 🤔

Nice one @HopePerseveres2.0 You have never failed to make me grin yet😁

I am just on a one but with a good sense of humour like yours, it just reminds us of the GOOD things in life.

Thank you and take great care,        B.😺👍🌷

3 minutes ago, Chippy said:

Yes a bit of a predicament the bike situation but as I said you’ll know what to do. You always do. 
 

Hope you lift throughout the day my friend. 

 

Chippy

Thanks @Chippy yes well worst that can happen is get a bill of DWP demanding money back off me!!!!!

Now the guy from there said my account had been closed on the 3rd of Feb, but money from them dropped

into my bank on the 4th, half normal amount..... well next full payment would have been next Tuesday. So my

Thinking is, WHY pay more if you are going to bill me? Know what I mean? Time will tell.🤔

Take care,       B.🤞

10 minutes ago, Chippy said:

Well B you’re not short of support on here today are you! Can’t get in the door to say hello! Are you signing autographs now? 🤣

Nice @Chippy, a possible money making idea, people can pay for his autographs! Or a go fund me page for motorbike? We are all on the support B train. No one should have to suffer so many 0's, plus be gaslit by the system in denied funds... B, keep fighting. They will be paying you someday for your survival story...

11 minutes ago, HopePerseveres2.0 said:

recognized in the US, you have to be "labeled" with MDD or GAD. Sorry it's the same scenario. Absolutely mind-boggling.

That's the one @HopePerseveres2.0

In the UK if you have been a hard worker ALL your life....They just DON'T want to know you.🦜🦜🦜🦜🦜

I hope you are doing well Hope, take care,         B.😺🤞🌷

26 minutes ago, Its-me-Rosie said:

I don’t scroll on here anymore but like to come on and see how people are doing.

hoping the next time I come on you’ve had a small glimmer.

love Rosie x 

Hey thanks @Its-me-Rosie you are a gem, I am just SO sorry you are suffering just as bad. Gardengirl sent 

me a film clip above, now I seen it before but it's worth a second watch. He explains how we have GOT to 

get WORSE....BEFORE we get better. Apparently all the horrible horrible feelings we have are DETOX, our

brain and body KNOW what to do, and as he says it's truly horrible but it won't kill us.

 

We have to just tune into the fact that IT'S true healing in action, very hard to live with, but we just distract and

ease ourselves through it as best we can. Yes on the vitamin D I think you will be right Rosie, but like you

I am over sensitive to any supplements, I can't even take magnesium glycinate without a flare up.

We WILL make it Rosie, you are strong as well with a fantastic life waiting, we will persevere through it

and go on to write our full recovery posts. 🤞

Take care and please stay safe.        B.🙏🙏🤞🌷