Update:

Still in a window (?) Was wavy yesterday and last night but it was really mild. Feels like flu symptoms when it's coming on.

Took my daughter to the Farm today, I promised myself, wave or no wave I am going to bloody live my life again im sick of this lol

And it went great.

She had a wonderful time and we held baby chicks and I fed a Deer and goats and it was wonderful lol.

I've started planning some hobbies too. End of September I've been invited to join a Viking Reinactment club and heck yeah am I doing it 😂

I've also decided to start metal detecting and informed my partner that all the trinkets I find are to remain in his man cave (the shed) because of potential ghosts/curses/bad juju and he doesn't believe in that sort of thing so he won't even notice if a ghost starts hoying his stuff around 😂

I hope this continues so I can heal and taper - I want off these poison pills asap.

@cherrysquid Love your spirit and humour my friend. Glad things are still going ok for you and you are able to keep living whilst recovering, this can be very hard to do so it's great you are managing it. It is much better to be living whilst tapering than suffering in PWD, so keep up that balancing act, no hurry, you'll get off in time. xxx

@cherrysquid , I am beyond elated, this is wonderful news, I myself started getting somewhat stubborn with myself and just decided to say the heck with it and start living my life no matter what unpleasantness comes up, because I wasn't going to let this WD defeat me or define me, I decided I wasn't going to let it take power over me. I knew when to tone it down listening to my body, but enjoy and live my life I did. Do I have a few hiccups along the way, yes, but I have learned to let them be. I am truly happy for you. God bless 🤗

@cherrysquid your daughter must of been just giddy holding the baby chicks, and petting the deer and goat, how cool is that, just the excitement in there little faces just lights a person up. Living life is beautiful. You my friend have such a beautiful outlook, and is so empowering. I'm so Happy for you just dancing in my shoes 💃

26 minutes ago, Bernadette said:

@cherrysquid your daughter must of been just giddy holding the baby chicks, and petting the deer and goat, how cool is that, just the excitement in there little faces just lights a person up. Living life is beautiful. You my friend have such a beautiful outlook, and is so empowering. I'm so Happy for you just dancing in my shoes 💃

Thank you @Bernadette ❤️ we all deserve to thrive after this horrible chapter in our lives.

I had a surprise interview sprung up on me yesterday; i was supposed to be starting mental health nursing next month as my second degree but since I was so poorly for months I couldn't do the required conditions needed to get in so I had to move my start year to next year. But she still wanted to interview me now anyway.

I mentioned (amongst other things) wanting to bring more awareness to the medical community about WD, AD Kindling, deprescribing and how doctors are disgustingly behind NICE guidelines.

She was impressed I even knew about NICE and smashed my interview. I have my placement next year. 🎈

Ive also been dealing with my uncle having a huge heart operation having two valves replaced and a membrane placed over his aorta. Hes recovering well despite small set backs he's smashing it. I thought I'd be a lot more poorly than I am with worrying but I seem to be okay for now.

My symptoms are now consistently between 0-4/10. I hope things continue this way.

12 minutes ago, cherrysquid said:

I had a surprise interview sprung up on me yesterday; i was supposed to be starting mental health nursing next month as my second degree but since I was so poorly for months I couldn't do the required conditions needed to get in so I had to move my start year to next year. But she still wanted to interview me now anyway.

I mentioned (amongst other things) wanting to bring more awareness to the medical community about WD, AD Kindling, deprescribing and how doctors are disgustingly behind NICE guidelines.

She was impressed I even knew about NICE and smashed my interview. I have my placement next year. 🎈

This is such good news @cherrysquid and well done! We NEED more people in the medical community who understand, those who have been through this are well positioned to advocate. I love this. Honestly brilliant! xxxxx

13 minutes ago, cherrysquid said:

ve also been dealing with my uncle having a huge heart operation having two valves replaced and a membrane placed over his aorta. Hes recovering well despite small set backs he's smashing it. I thought I'd be a lot more poorly than I am with worrying but I seem to be okay for now.

I am sorry to hear, but pleased the recovery is going well. Great you are coping with this. More signs of healing for you

14 minutes ago, cherrysquid said:

My symptoms are now consistently between 0-4/10. I hope things continue this way.

:) Hope so too.

36 minutes ago, Chippy said:

This is such good news @cherrysquid and well done! We NEED more people in the medical community who understand, those who have been through this are well positioned to advocate. I love this. Honestly brilliant! xxxxx

I am sorry to hear, but pleased the recovery is going well. Great you are coping with this. More signs of healing for you

:) Hope so too.

Thanks @Chippy I'm not afraid to correct them either so when they're like:

"YoU cAnT gEt WiThDrAwALs FrOm 25Mg." or "ItS A ReLapSe Of SyMpToMs"

I'll be quick to re-educate with a swift forked tongue 😂

Couldn't have gotten to this point without you, @SarahMc and everyone on this Forum, honestly <3

8 minutes ago, cherrysquid said:

I'll be quick to re-educate with a swift forked tongue 😂

🤣

9 minutes ago, cherrysquid said:

Couldn't have gotten to this point without you, @SarahMc and everyone on this Forum, honestly <3

Bless you. Nice to be doing something positive. Thanks for being you. X

3 hours ago, cherrysquid said:

I had a surprise interview sprung up on me yesterday; i was supposed to be starting mental health nursing next month as my second degree but since I was so poorly for months I couldn't do the required conditions needed to get in so I had to move my start year to next year. But she still wanted to interview me now anyway.

I mentioned (amongst other things) wanting to bring more awareness to the medical community about WD, AD Kindling, deprescribing and how doctors are disgustingly behind NICE guidelines.

She was impressed I even knew about NICE and smashed my interview. I have my placement next year. 🎈

You're a hero @cherrysquid, so excited for you to get out there and start making a difference!! 🤩💪

3 hours ago, cherrysquid said:

My symptoms are now consistently between 0-4/10. I hope things continue this way.

So, so, so happy for you. Hope to join you there sometime soon.

2 hours ago, cherrysquid said:

Couldn't have gotten to this point without you, @SarahMc and everyone on this Forum, honestly <3

Right back at you! Don't forget us when you're better, we need that sharp tongue and quick humour of yours! 💜😄

28 minutes ago, SarahMc said:

You're a hero @cherrysquid, so excited for you to get out there and start making a difference!! 🤩💪

So, so, so happy for you. Hope to join you there sometime soon.

Right back at you! Don't forget us when you're better, we need that sharp tongue and quick humour of yours! 💜😄

You'll be here with me soon. And im not going anywhere I'll he here forever now lol. Im waiting for you and we still have our meet up in Salem to look forward to 🎃 ❤️😂

1 minute ago, cherrysquid said:

You'll be here with me soon. And im not going anywhere I'll he here forever now lol. Im waiting for you and we still have our meet up in Salem to look forward to 🎃 ❤️😂

Can’t wait!!!! 💜🧙‍♀️💀

The day has come sigh. Back into the waves 😂

Woke up this morning with anxiety and really high SI. I did have a very stressful week last week - uncles surgery, a pipe under my bath had a leak and flooded the kitchen below etc.

But my baseline has shifted and if this was 2 or 3 months ago this would be a window lol

Stress isn't causing instant waves now by the looks of things. Laughing too hard no longer gives me burning skin and tingles.

Im getting there. Its slow as we know.

But god I dont half feel like poo this morning 😭 I could cry which is good ive not been able to properly cry for ages.

Ill just float through this wave and wait for it to finish its tantrum lol

3 hours ago, cherrysquid said:

The day has come sigh. Back into the waves 😂

Woke up this morning with anxiety and really high SI. I did have a very stressful week last week - uncles surgery, a pipe under my bath had a leak and flooded the kitchen below etc.

But my baseline has shifted and if this was 2 or 3 months ago this would be a window lol

Stress isn't causing instant waves now by the looks of things. Laughing too hard no longer gives me burning skin and tingles.

Im getting there. Its slow as we know.

But god I dont half feel like poo this morning 😭 I could cry which is good ive not been able to properly cry for ages.

Ill just float through this wave and wait for it to finish its tantrum lol

Thinking of you as always @cherrysquid. It’s good that you’re still able to see that things have improved over the past few months. You’ll get through this wave and onto the other side where an even brighter window awaits 💜.

2 hours ago, SarahMc said:

Thinking of you as always @cherrysquid. It’s good that you’re still able to see that things have improved over the past few months. You’ll get through this wave and onto the other side where an even brighter window awaits 💜.

Thanks @SarahMc ❤️ Im just making myself focus on the positives.

9 hours ago, cherrysquid said:

The day has come sigh. Back into the waves 😂

Woke up this morning with anxiety and really high SI. I did have a very stressful week last week - uncles surgery, a pipe under my bath had a leak and flooded the kitchen below etc.

But my baseline has shifted and if this was 2 or 3 months ago this would be a window lol

Stress isn't causing instant waves now by the looks of things. Laughing too hard no longer gives me burning skin and tingles.

Im getting there. Its slow as we know.

But god I dont half feel like poo this morning 😭 I could cry which is good ive not been able to properly cry for ages.

Ill just float through this wave and wait for it to finish its tantrum lol

Wow the way you react on this waves makes me jealous. I wish I have the wisdom strength and power to deal with a wave like this but I have to be honest I’m not that far. If I have a bad day and deep depression I can’t see anything positive and certainly can’t laugh about something. I wish I could ❤️

15 minutes ago, Saar8srl said:

Wow the way you react on this waves makes me jealous. I wish I have the wisdom strength and power to deal with a wave like this but I have to be honest I’m not that far. If I have a bad day and deep depression I can’t see anything positive and certainly can’t laugh about something. I wish I could ❤️

Believe me I couldnt at first. It takes a lot of practice and self forgiveness. You'll get there ❤️

9 hours ago, cherrysquid said:

Ill just float through this wave and wait for it to finish its tantrum lol

That's the perfect attitude, @cherrysquid We can't tell our minds to not have thoughts or feelings, but we don't have to give those thoughts room in our lives. Let them in, then open the back door and let them pass through. You're doing great!

29 minutes ago, mstimc60 said:

That's the perfect attitude, @cherrysquid We can't tell our minds to not have thoughts or feelings, but we don't have to give those thoughts room in our lives. Let them in, then open the back door and let them pass through. You're doing great!

❤️

On 8/17/2026 at 10:22 AM, cherrysquid said:

The day has come sigh. Back into the waves 😂

Woke up this morning with anxiety and really high SI. I did have a very stressful week last week - uncles surgery, a pipe under my bath had a leak and flooded the kitchen below etc.

But my baseline has shifted and if this was 2 or 3 months ago this would be a window lol

Stress isn't causing instant waves now by the looks of things. Laughing too hard no longer gives me burning skin and tingles.

Im getting there. Its slow as we know.

But god I dont half feel like poo this morning 😭 I could cry which is good ive not been able to properly cry for ages.

Ill just float through this wave and wait for it to finish its tantrum lol

Im sorry to read @cherrysquid I hope today is better for you. The Waves can be so cruel. Better days coming. xxx

I am so heartbroken I was doing so well. I waited for ages to allow myself to believe this might be it... im stablising. Its getting hard to focus on the positives so this wave is really sinking its claws in. Just trying to flow with it.

Its so unfair what we all have to go through. I want to curl up in a ball and just cry 😂

I know it'll pass. Its just so strange how, when your in the wave, it changes your mindset completely.

Im not sure how to get unemployment with this either because I cant work yet and how do I get a sick note if my doctors dont believe in WD? If I say its anxiety or depression they'll wanna move my dose around. Idk what to do in that regard.

Oh @cherrysquid I am so sorry. And I completely get it. When we are feeling better we start to think of all the things we can do, see our lives come back to us, make plans, feel optimistic, then things take a turn and along comes a wave, and even though we know better and spend much time telling others the same, we can't quite see it for ourselves in the moment, such a cruel experience. You will get another window though for sure!

I wish I knew the answer with the unemployment question. I think it is awful what we have to do to make the system work for us. If you can't get your GP to understand what you are going through all you can do is say you are not comfortable moving doses and request CBT instead and perhaps that will work.

There is a protracted WD code for the NHS so you could do that. Ask for a referral perhaps to the deprescribing clinic, long waiting list and whilst waiting you could get the sick note needed to gain your benefits.

Code for the doctor to put on your file would be SNOMED CT ID: 1285639002

4 minutes ago, Chippy said:

Oh @cherrysquid I am so sorry. And I completely get it. When we are feeling better we start to think of all the things we can do, see our lives come back to us, make plans, feel optimistic, then things take a turn and along comes a wave, and even though we know better and spend much time telling others the same, we can't quite see it for ourselves in the moment, such a cruel experience. You will get another window though for sure!

I wish I knew the answer with the unemployment question. I think it is awful what we have to do to make the system work for us. If you can't get your GP to understand what you are going through all you can do is say you are not comfortable moving doses and request CBT instead and perhaps that will work.

There is a protracted WD code for the NHS so you could do that. Ask for a referral perhaps to the deprescribing clinic, long waiting list and whilst waiting you could get the sick note needed to gain your benefits.

Code for the doctor to put on your file would be SNOMED CT ID: 1285639002

Thank you as always @Chippy xxx I'll deffo get the ball moving on the referrals. I've been on EMDR waiting list since December last year and was told it was an 82 week wait 😂

I get flickers of such hope and peace during a wave ill hold tightly onto those.

7 minutes ago, cherrysquid said:

Thank you as always @Chippy xxx I'll deffo get the ball moving on the referrals. I've been on EMDR waiting list since December last year and was told it was an 82 week wait 😂

It’s a pleasure. Tread carefully with that one though. You want a doctor who gets all this. I don’t think the clinic is really that much help to you tbh as we can help you with everything you need however perhaps sitting with a referral might add weight to your claim.

8 minutes ago, cherrysquid said:

get flickers of such hope and peace during a wave ill hold tightly onto those.

That’s the way my friend. Better days coming

3 hours ago, cherrysquid said:

I am so heartbroken I was doing so well. I waited for ages to allow myself to believe this might be it... im stablising. Its getting hard to focus on the positives so this wave is really sinking its claws in. Just trying to flow with it.

Its so unfair what we all have to go through. I want to curl up in a ball and just cry 😂

I know it'll pass. Its just so strange how, when your in the wave, it changes your mindset completely.

These waves will always try to drag us down, but you are such a fighter and I know you won't let that happen. (I was going to use a swimming metaphor because of the whole wave thing but then I remembered...you can't swim 😂). It doesn't feel like it right now, but you're doing amazingly well to have had such a long, bright window this early on. You will get back there soon, I'm sure of it. Here for you always 💜