u/Exciting-Kitchen7643

Hey, my twin and I will be meeting a few friends to celebrate our 40th in Brighton in August. Can anyone suggest fun afternoon activities? Likely to be heading back early evening. Looking for things like bottomless brunches, champagne afternoon teas, and just fun games and activities (escape room type things but not necessarily that). We're a group of girls, and none of us are massive drinkers. We'll all be getting the train in. Thank you!

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My son was on Rays of Sunshine Ward from June to August 2021 as a baby, and would have overlapped with Martha Mills. He had a mechanical tear to his pancreas, massive haemorrhagic ascites, SMV and portal vein clots, septic peritonitis, 5 further episodes of sepsis, and giant communicating pseudocysts. His acute phase was 7 months and almost all of that was spent in hospital. I am also an adult nurse.

Having your baby fighting for their life is life-alteringly terrifying. Experiencing that in *this* unit at the time, was like being in a nightmare. There is virtually zero funding for pancreatitis, and all interest and care flows to liver patients. Clinical nurse specialists for ongoing support, peer support groups, psychological support for long term patients...I asked for psych support after 4 months in hospital with my son, when they put us in the nursery with four other babies for two months and my son and I both suffered severe sleep deprivation and they refused to move us... i was told the psychologist was there to support liver families, but she can give me a leaflet 👍. The play helper did not come near my son's cot once in two months. This was the extent of the division.

That was the environment, but the hierarchy and the poor continuity of care were the worst part. The consultants changed after five days usually. Every single time they changed the plan changed. Rest the pancreas. Challenge the pancreas. Rest the pancreas. Challenge the pancreas. Every challenge was agony for him. He ended up needing TPN and NJ feeds for several months before he could tolerate any feeds. Whenever I tried to explain this, no one listened or cared. There were several occasions in the worst pancreatitis attacks when I had to sit up all night long and pat his bottom for him to sleep because he was in agony and they refused the continuous morphine he needed, pca was completely insufficient and it was a battle to get them to change this. It took 9 days to organise an MRCP which was the reason that we had been transferred there in the first place, and when I asked if there was an anaesthetist in place they said no, we'll just give clonidine. I advised this would never work, he had been intubated multiple times by now, it had minimal impact, and needed a full anaesthetic. They nodded along and disagreed, patronisingly. He was wide awake on clonidine, they had no anaesthetist, scan was put back several more days.

So many more examples, but basically none of the doctors listened to the parents. None of the doctors listened to the nurses. None of the consultants (bar one!!) listened to the junior doctors. The egos were everything there, the ward was full of professors and sycophants. I ended up literally willing no major deteriorations to happen when we were there because I didn't think it would be safe at all. And we were so very lucky. All of the major sepsis episodes and stabilisations, including PICU escalations, took place in Southampton. Thank God. But for anyone on here who finds Martha's Rule annoying or obstructive or unnecessary, or thinks that Martha's parents were exaggerating or just didn't understand how it is....how it was on Rays at that time was wrong. It was isolating and neglectful care, sure. But it was dangerous. So dangerous. I have worked on plenty of units, but I've never been on one like that. Where you could literally scream from the rooftops and no one would hear you. Since Martha's Rule, I hear they have critical care outreach nurses doing rounds most days and even just hearing that feels like such a relief.

This was actually written for the Doctors group but got deleted. I am guessing that generally nurses have less pf an issue with Martha's Rule than doctors do anyway? I hope. But I just wanted to post this somewhere.

My son was on Rays of Sunshine Ward from June to August 2021 as a baby, and would have overlapped with Martha Mills. He had a mechanical tear to his pancreas, massive haemorrhagic ascites, SMV and portal vein clots, septic peritonitis, 5 further episodes of sepsis, and giant communicating pseudocysts. His acute phase was 7 months and almost all of that was spent in hospital. I am also an adult nurse.

Having your baby fighting for their life is life-alteringly terrifying. Experiencing that in *this* unit at the time, was like being in a nightmare. There is virtually zero funding for pancreatitis, and all interest and care flows to liver patients. Clinical nurse specialists for ongoing support, peer support groups, psychological support for long term patients...I asked for psych support after 4 months in hospital with my son, when they put us in the nursery with four other babies for two months and my son and I both suffered severe sleep deprivation and they refused to move us... i was told the psychologist was there to support liver families, but she can give me a leaflet 👍. The play helper did not come near my son's cot once in two months. This was the extent of the division.

That was the environment, but the hierarchy and the poor continuity of care were the worst part. The consultants changed after five days usually. Every single time they changed the plan changed. Rest the pancreas. Challenge the pancreas. Rest the pancreas. Challenge the pancreas. Every challenge was agony for him. He ended up needing TPN and NJ feeds for several months before he could tolerate any feeds. Whenever I tried to explain this, no one listened or cared. There were several occasions in the worst pancreatitis attacks when I had to sit up all night long and pat his bottom for him to sleep because he was in agony and they refused the continuous morphine he needed, pca was completely insufficient and it was a battle to get them to change this. It took 9 days to organise an MRCP which was the reason that we had been transferred there in the first place, and when I asked if there was an anaesthetist in place they said no, we'll just give clonidine. I advised this would never work, he had been intubated multiple times by now, it had minimal impact, and needed a full anaesthetic. They nodded along and disagreed, patronisingly. He was wide awake on clonidine, they had no anaesthetist, scan was put back several more days.

So many more examples, but basically none of the doctors listened to the parents. None of the doctors listened to the nurses. None of the consultants (bar one!!) listened to the junior doctors. The egos were everything there, the ward was full of professors and sycophants. I ended up literally willing no major deteriorations to happen when we were there because I didn't think it would be safe at all. And we were so very lucky. All of the major sepsis episodes and stabilisations, including PICU escalations, took place in Southampton. Thank God. But for anyone on here who finds Martha's Rule annoying or obstructive or unnecessary, or thinks that Martha's parents were exaggerating or just didn't understand how it is....how it was on Rays at that time was wrong. It was isolating and neglectful care, sure. But it was dangerous. So dangerous. I have worked on plenty of units, but I've never been on one like that. Where you could literally scream from the rooftops and no one would hear you. Since Martha's Rule, I hear they have critical care outreach nurses doing rounds most days and even just hearing that feels like such a relief.

I have just lost my deposit for my tattoo because I asked to see the design prior to my appointment. Originally a few days before and eventually the night before. I was basically told no, and so I cancelled. I'm told it's a matter of trust. And that's exactly my point....firstly I have never met her before and I'm supposed to trust her. In her mind, I am supposed to look at her previous designs and agree that she's a talented artist and then give her free reign to permanently draw whatever she wants on my arm. She is talented? Or course she is? But to me that's not the whole deal. I am going to get two maybe three tattoos in my lifetime. It is a huge deal for me and more than anything I'm not just paying for a signed piece of her artwork...I want it to truly reflect me and be authentic. And I personally am not clear-headed enough to review that with the artist looking at me on the day, or assertive enough to try to articulate exactly what I might want to be different on the spot. And surely I'm not the only one out there?! How many other things (that we have to live with for the rest of our lives) do we just have to turn up blind and agree to?! I think it's bizarre.

I guess I'm talking to people that deal with a lot as adults, but because of their childhood have awful coping mechanisms so it's all really difficult to process. I am nearly 4 years in and feel like I'm only just starting to feel now, and there's a long way to go.

I really should get it, I was there. When he was six months old we took him into hospital with a swollen abdomen and he was in hospital after that for 7 months. Nearly died multiple times, was in agony for months with recurrent pancreatitis, dropped 90 centiles, was tube and vein fed for months. I think the main issues were the level of pain the lack of cuddles (at his worst he had ten lines in, I just didn't feel happy moving him). He was on HDU and parents couldn't sleep there, so for 7 of the scariest weeks of his life, his Mum wasn't even with him for 9 hours at a time. He's ended up with attachment and developmental trauma. He has severe regulation problems, sensorimotor integration difficulties. He only does part-time at school with a full time 1:1 due to aggression and he basically can't access education because he's constantly either hypervigilant or triggered. With therapy we make very slow progress. But there is another little boy in his class who also has difficulties but they're just nowhere near as bad as my son's..he also had infant medical trauma and things were touch and go. It was all known and following a protocol, there were minimal acute situations and he wasn't there as long. He also was able to feed and cuddle much more, and there was a lot more family support. Before my son was ill my Mum had already died, my Dad hit the bottle. And then after, my FIL died and my MIL was diagnosed with dementia. So we have been on our own and dealing with a hell of a lot and I think that has been harder for us and our kids. But anyway all that said I can't help comparing them and wondering why my son has been affected so much more 😔. And it makes me sad.

My 5 year old son has a really complex profile from developmental and attachment trauma (complex medical history and prolonged hospitalisation). One of his issues is fine motor although he is happy to play lego and playdoh etc but absolutely hates writing. He is very demand avoidant and hates making mistakes too so that doesn't help. Anyway I was thinking to try those grooved books to make writing easier for him but the books have arrived and they are very small letters and the grooves aren't very deep and he finds them impossible which is the opposite to what we wanted. Can anyone recommend grooved books which are really deep with large letters and pretty fool-proof?

I'm not here for a conversation about why that is, there are a lot of really good reasons why this stuff is mainly stuck in my body. And to be fair to me I have had and am still in therapy. But yeh basically I went through hell with my son as a baby. He was in hospital after an emergency situation aged 6 months, for another 7 months. He nearly died multiple times, and I think I just dissociated through the whole thing. But I dno, I read a post the other day about many peoples' reactions to when their kids had febrile seizures on a one off. And obviously that's horrendous and terrifying. But when you have experiences like that over and over and over again, you just feel numb to the whole thing because I guess that's how you survive? I think I just read the crispness and clarity of a "normal" reaction and compared it to mine which is just fuzz really. And don't know where to start.

My son was in hospital for 7 months, he nearly died multiple times, he didn't have cancer. I would just love if there was a group of people I could talk to about this experience, and the ptsd that comes after it.

I've had a lot of trauma. Literally the four years I've been working with her every session has been filled to the brim. And there's still a lot to deal with and a lot to talk about. But like today I said I had gone for a date with my husband. Which I don't think I have done the entire time I've known my therapist. Some things just seemed a bit more positive. And she was just like I want to just draw your attention to how hard you have worked and how well you have done to still be standing and surviving, with the amount of shit that has come your way. And, that should feel nice. But it feels like she's thinking I'm ok now and we can stop sessions..and actually she was *really* careful with her wording that she knew I still had a lot of stuff to work through. But why does it always feel like that 😔.

Hey I'm in the UK. My son is 5 and he has a complex medical history, attachment trauma and a language disorder. He has extremely challenging behaviour and his start this year was horrendous and I didn't think we'd make it past Christmas. I left my job to support a reduced timetable which has helped, and luckily his agency 1:1 has become permanent which is fab. I also have found a trauma-informed SEMH specialist speech therapist who costs an absolute fortune but is worth her weight in gold. We are paying for therapy and strategy planning sessions with her, and the school are now considering commissioning her for training. We all feel like there is someone who knows what they are doing now. Is it annoying when other professionals play a big part in a school journey,? I just feel like what he needs atm is therapeutic, and he can't access education without that. So how can we expect the educators to do that as well as educating everyone else?

Do any of you? I feel like that's a dictatorship really?! I had really bad OCD as a kid and my Mum basically groomed me to compulsively tell her everything that came into my head Gossip, constant confessions etc. It got to a place where I suffered severe anxiety and felt guilty if anything at all was in my head. I absolutely relish the fact that my children can have their own boundaries and their own lives in their heads and choose what they share with me. I try to cultivate an environment and relationship where they feel safe to share and problem solve and hope that this will be sufficient that they don't feel alone or the need to keep really big secrets, but that part is on me. Demanding that no secrets are ever kept feels like enmeshment to me?

Feel quite grossed out by this dream ha. For context have been with my therapist for nearly four years, have experienced a lot of trauma prior to and during our work together, and due to childhood coping mechanisms, I really seem unable to feel any of this. I have recently given up my job to support my child with special needs, and I would say I am moving out of dissociation and into my OCD stage. Still not feeling much but frequently spiralling at small changes and issues. I very rarely cry, and have never done so in therapy.

I dreamt that I really needed to use the bathroom at my therapist's house, and she showed me where it was and I was like it's ok if you stay, and she literally stayed there while I tried to open my bowels and I couldn't, but then I didn't stop I literally manually evacuated these stools that looked like they had been stuck inside me for a very long time. She was just there not really saying much but totally fine with being there. I felt concerned that it was taking up too much of the session, but very weirdly, not embarrassed about the situation?! But then when I had finished I flushed and it had totally blocked the loo, it was this massive drama, her husband had to come and try fix it, and then call a plumber etc, I was so mortified. We still had like 25 mins left of our session so we went down to start, but there were all these people in session with me. My twin sister but also several random guys I didn't know. And they were kind of chattering and distracting me and irritating my therapist. She left to check on what I assumed was the toilet, and I asked these guys to leave. Then I checked the time and it was end of session and my therapist hadn't come back. And I hung around for a long time feeling smaller and smaller and more ashamed of the whole situation, but she didn't come back so I just left and went home.

So obviously, gross dream. Probably quite a lot of meaning in it lol..do you guys bring up things like this 😭😂

My husband and I have had a terrible run of circumstances for a very long time now. Through loss and trauma we have both lost our support network and had to carry grief and ptsd the entire time we have had young kids. We have been in survival mode and unfortunately, our youngest son was in hospital for 7 months as a baby due to an emergency and he now has developmental trauma and extremely violent and challenging behaviour as a 5 year. All these events and our day to day lives making it impossible to leave our children with anyone and go for dates or do anything for ourselves, has meant our marriage and our relationship has been on the back-burner for such a long time now. I am sad about how that has been, relieved that we have been rocks for each other and concerned about my husband's depression and distance from God (and people, and joy), especially since his Dad died two years ago. I'd really like to hear testimonies where prayer has reignited your spouse's spiritual journey and as a result marital closeness.

My husband and I have had a terrible run of circumstances for a very long time now. Through loss and trauma we have both lost our support network and had to carry grief and ptsd the entire time we have had young kids. We have been in survival mode and unfortunately, our youngest son was in hospital for 7 months as a baby due to an emergency and he now has developmental trauma and extremely violent and challenging behaviour as a 5 year. All these events and our day to day lives making it impossible to leave our children with anyone and go for dates or do anything for ourselves, has meant our marriage and our relationship has been on the back-burner for such a long time now. I am sad about how that has been, relieved that we have been rocks for each other and concerned about my husband's depression and distance from God (and people, and joy), especially since his Dad died two years ago. I'd really like to hear testimonies where prayer has reignited your spouse's spiritual journey and as a result marital closeness.

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It's a contentious subject, but everyone is judging and thinking all parents can manage to carry a lot of stress trauma and grief, have zero support, and never lose their temper and always get it right. We're not robots?!

My son has developmental trauma and can be highly aggressive. We had 18 months of violence towards us every single day,.and still very often. He hit my elderly grieving MIL in the face. He has attacked his brother every day, one day my husband ran upstairs to blood curdling screams and found he had pinned his brother in the corner and was kicking him in the head. I'm just giving some examples. But even dealing with that, everyone is just like take a deep breath and count to ten. But when you're being attacked, scratched, bitten, hair pulled, kicked, punched, it is not always possible to be spot on, you just have to do your best.

We are in a pretty good place now and we've worked super hard to get here. I don't need advice. But I guess I just wondered if anyone else feels like only perfection and "gentle hands" are acceptable these days. For the record we don't smack, and it's pretty much illegal here. But sometimes we react with anger in extreme circumstances, and physical intervention can involve physically restraining, grabbing and removing from a situation etc.

I honestly thought earlier that I'd like to take a gun to my head, I'm so sick of it all. Has anyone else had relentless trauma and grief to manage with two kids and zero support, and living in this time when you are supposed to be able to parent with absolute perfection at all times, no matter what you are going through? In 8 years we have seen my Mum die, my husband had his visa declined and threatened with deportation which has left him with ptsd (out of work for several months too), my baby son spent 7 months in hospital from 6 months of age and ended up with developmental trauma and extremely challenging behaviour, 2 years ago today my FIL died after a quick deterioration, and shortly afterwards MIL was diagnosed with dementia. I'm not even 40 yet. When we were in hospital with my son, because he had an injury that no one had ever seen before which could be associated with abuse, we had a full social services investigation which was horrendous. Cleared all fine. The timeline we had with my FIL was that his death, and the stress and sadness surrounding it, triggered my son's trauma to present, and literally, for 18 months, we dealt with severe aggression from him every single day. He was only young but strong, and I was often covered in bites and scratches as was his brother. Childminders were unable to manage this and shouted at him a lot and called him horrible names and put him on the naughty step etc. Made his behaviour even more challenging. At this time my grieving husband who already had ptsd was unable to manage my son's aggression, particularly when it came to my other son. My husband's normal nature is gentle and calm, albeit more short-tempered in his grief, and he has never created situations himself but has reacted usually in protection of my other son. One time he ran in to blood curdling screams and found out that my younger son had his brother crammed into a corner and was kicking him in the head. He was lightly smacked for this, the only time. Other than that when he had been found really hurting his brother he had been grabbed off and shouted at. In the last 14 months, we have had therapeutic parenting classes, my husband has started antidepressants, I have quit my job to open up space for everyone which has really helped and things are *so* much better, like 95% better. For the last 7 months they have been. When I picked up my son today, the Head said that he had mentioned that his Daddy had thrown away his favourite toy car. I was like what do you mean, the time it happened 2 years ago?! She thought it had literally just happened! Also said his Daddy always tells him to shut up. I was like 😭. He has said that but I don't think I can describe how pushed to the limit we have been for so many years now with zero respite or support, and it is not how things are now, this happened around the time his Dad died and he needed some space to grieve but his home was a literal battle ground. Now terrified there will be another investigation because honestly we have always done our absolute best in completely dire circumstances .

Would it be offensive to say to my long term therapist that I find myself assuming that she can't relate to some of my issues because she is clearly very affluent? We have sessions in the grounds of her very large property. It hasn't usually had an impact but I have recently had to leave my job to support my child with additional needs, and we are living on just my husband's salary so things are definitely tricky. I don't find it hard to talk about with her and her responses are perfect. But I guess I'm just mindful it's a me thing and not something she has to worry about, and I feel a little self-conscious about it. When we started sessions, and up until now, money has not been a problem.

I have had OCD since around 10 I would say, although pretty bad anxiety prior to that as well. It manifested with a house move. I would say first symptoms were not being able to sleep with anything in my bladder, then not being able to sleep without counting all the lights on in the street and a whole long list of people to say goodnight to and prayers to say. Moved on to taboo dreams and confessions, and the onto HOCD and eventually ROCD. I would say since my early 20s I have most had it under control, and although our family has had an extremely traumatic run of it for nearly a decade, culminating in CPTSD, I would say that my primary state has been dissociation, my other preferred childhood coping mechanism. However since my son got diagnosed with developmental trauma and I had to give up my job to support him, I have slightly more time on my hands albeit with a lot of stress, and I have found the rumination has worsened.

In the last 6 weeks, we have been having renovations done upstairs, mainly on our bedroom. Since we have had so much to deal with in recent years, I wanted our room to be a haven. I have chosen whites and creams and muslin and linen and it is absolutely beautiful. This has totally backfired on me lol, my OCD has gone through the roof. Every little mark is so intensely stressful. It's a no shoe room, no sticky hands. The cat came in and I got stressed about the throw and now that's covered with an old blanket. I'm constantly twitching the lamps to get them back to the 45 degree angle that feels right. I feel powerless like I did as a kid, like it's too nice for me and I don't deserve nice things and it's ended up being the most unrelaxing place!! I am really sad about this!! Taboo dreams have started too, separately. Can anyone else relate to this? I realise I have kept things looking shit for ages so I don't have to feel like this.