We have just been at Harry Potter Studios (London) and tried the butterbeer. We were too scared to try it on a previous visit because we had read such awful reviews about how disgusting it was. I was pleasantly surprised today when we tried some, and my kids loved it! Just tasted like cream soda with a mild hint of butterscotch 🤷. Surely that's not the flavour so many people hate?
Basically I have been in therapy for four years. And I have had a very traumatic and tumultuous eight years, so mostly that has been dealing with acute situations. I have slightly more space now, for various reasons, although still a very difficult daily life. I also have a lot of childhood trauma from parents with personality disorders, which make it very difficult to process any of the recent trauma and grief I have experienced because I basically dissociate and feel numb most of the time. We have started doing inner child work recently and it's started getting me closer to feeling and that feels really scary for me. I also experience a lot of really painful somatic pain particularly in relationship with my Dad. In my session yesterday all of that just came to a head and I felt really blocked. I actually came away thinking, do I need to change modality? Is anything changing here? But I just really felt something shifting and by the time I got home I had a strong urge to talk to my inner child and I did work out a lot of the reasons for not feeling and I did manage to cry and I still feel the weight of that emotion now. Which is huge for me. The impetus seemed to be "really, are you going to drop this therapist you really trust, just as you start to make progress, when actually you have never once *tried* to feel". And I realised for the first time that that is true. I talk about the blockage, I talk about how hard my life is, how I can't feel, with this sort of finality and pride. But I never actually sit down and go there, I would do anything to avoid it. I think she knows I run and detach from people, and assume I'm too much for them when I feel scared. But I want to share this but feel guilty for sharing that part.
I'm 5ft 1 and a UK size 8-10 pre-babies. And not much bigger now. I had vaginal deliveries with both my babies, 2nd degree tears with both, and no forceps needed. The deliveries were actually the easiest part for me. The first labour definitely got closer to a CSection than the second, and I ended up having an epidural but still somehow managed a good delivery. Anyway, first baby was 12 days late and weighed 8lb4 which is fair, second baby was 5 days early and weighed 8lb15. I just don't really know why! Second baby had low PappA so I was on aspirin most of the pregnancy. Can that lead to macrosomia? I know for some it's not enormous, but proportionately they were huge for me. Would be nervous to have another bigger one!
Especially about type 9 please! Sorry for so many posts right now, it's just annoying me that I can't get this. I was definitely leaning towards 9 (probably w1) and then listened to a podcast that totally threw me off as it was so generic. It was basically saying 9s don't have a rich imaginative life, 9s do their best not to experience difficult/traumatic situations as what they are, and basically bury their reactions and pretend everything is great and it'll work out fine. I found this really irritating to listen to. As someone with ptsd from a lot of grief and trauma, I do definitely try to ignore and bury it. I have lost a lot, and for example I actively resist sentimentality, when I used to embrace it. I have many painful emotions I have been trying to ignore for many years which have unfortunately started manifesting as somatic pain. But I certainly don't pretend it's all sunshine and roses. If anything it's made me kind of bitter and negative in the end (tbf it's all been very prolonged and extreme). But I don't feel like I relate to types 3 or 6 at all. I really have felt like I was a 9. So yeh I guess I'd just like to listen to something slightly less cookie cutter!
I'm just learning how this all works. I find it very easy for my boundaries to be blurred. They almost always blur and I get sucked into what other people want or need. My husband has amazing boundaries and I find it easier to navigate life with him, and over time and with therapy I have become more assertive and I nod along less. I will sometimes diplomatically put my point across now. I have my own mind with regards to core values, and actually this has always been the case. I won't be swayed on my moral compass etc, whether that's in relation to my own actions or being asked my opinion on others. I can be quite direct on that front. But this confuses me as it seems like 9s can be conflict avoidant to the extent they'll just agree to things that they feel uncomfortable with to keep the peace? I like harmony, I kind of need harmony and inclusion, but I would these days rather resolve an argument diplomatically than sit there upset about it. Also, although it is said that 9s fear abandonment, and I certainly do, I will always withdraw and dissociate, and internalise under stress. I will feel that others don"t care about me for any number of reasons, and I'll withdraw like "don't need them, I'm fine on my own". I have to push myself to connect, in times of stress. Does this all sound like 9w1?
I'm just learning how this all works. I find it very easy for my boundaries to be blurred. They almost always blur and I get sucked into what other people want or need. My husband has amazing boundaries and I find it easier to navigate life with him, and over time and with therapy I have become more assertive and I nod along less. I will sometimes diplomatically put my point across now. I have my own mind with regards to core values and won't be swayed on my moral compass etc, whether that's in relation to my own actions or being asked my opinion on others. I can be quite direct on that front. But this confuses me as it seems like 9s can be conflict avoidant to the extent they'll just agree to things that they feel uncomfortable with to keep the peace? I like harmony, I kind of need harmony and inclusion, but I would these days rather resolve an argument diplomatically than sit there upset about it. Also, although it is said that 9s fear abandonment, and I certainly do, I will always withdraw and dissociate under stress. I will feel that others don"t care about me for any number of reasons, and I'll withdraw like "don't need them, I'm fine on my own". I have to push myself to connect, in times of stress. Does this all sound like 9w1?
Ok here goes!
• How old are you? What's your gender? Give us a general description of yourself.
I'm 40 this weekend! And female. I'm married with two kids and I'm a nurse.
• Is there a medical diagnosis that may impact your mental stability somehow?
In a sense, yes. I have undiagnosed but probable CPTSD. This is from having two parents with BPD, and then in the last 10 years a hell of a lot of grief and trauma. It's left me with various triggers, panic attacks, health anxiety and significant somatic pain.
• Describe your upbringing. Did it have any kind of religious or structured influence? How did you respond to it?
Both my parents had very traumatic childhoods, they had personality disorders, and they had a lot of rows. My Dad drank too much, and the house was very cold and critical and there was a lot of cruelty and very little kindness. I responded to this by being as much of a people pleaser as I could, and dissociated. Into teen years I developed insomnia, OCD and a lot of anxiety. I was brought up Catholic, and everyone else seemed to just be going for duty but I absolutely loved church, from a young age. For the beauty, tf spiritual safety and the peace. It brought me sooo much peace going there..
• What do you do as a job or as a career (if you have one)? Do you like it? Why or why not?
I'm a nurse, it's my second career (surveyor before). I was quite successful academically, and I didn't really know what I wanted to do. My parents didn't want me to be a nurse, here in the UK it's not brilliantly paid and not particularly well thought of. I have always loved it. I was quite ambitious to start with and started making progress but life circumstances have really bombed my career. Most of the stuff I have gone through has involved close loved ones in rare health situations including many deaths or near deaths. I have had to leave various positions due to ptsd. Having said that, I still like my job and feel it's a vocation.
• If you had to spend an entire weekend by yourself, how would you feel? Would you feel lonely or refreshed?
Lol, I have a child with attachment and developmental trauma so I very rarely get a second to myself. I would say right now I'd find it so refreshing! Maybe when I was younger I would have felt stressed because a lot of my anxiety came out when I was alone.
• What kinds of activities do you prefer? Do you like, and are you good at sports? Do you enjoy any other outdoor or indoor activities?
I was always good at sports as a kid, not so much as an adult. I think because the trauma has affected energy levels etc. I'm not the most active now, but I like walking, singing, sewing, cinema.
• How curious are you? Do you have more ideas then you can execute? What are your curiosities about? What are your ideas about - is it environmental or conceptual, and can you please elaborate?
I am curious. I like reading about psychology, religion and spirituality mainly. At my peak shen I had time my favourites were Jung and Kierkegaard. I would say fairly abstract but I do need some substance to get my teeth into. I also like hearing about different places and cultures.
• Would you enjoy taking on a leadership position? Do you think you would be good at it? What would your leadership style be?
No no no big no. Ha. I have always managed to avoid this. There have been times when I have been told that people like me, that people trust me, that I would be good at leadership. I don't like public speaking, I feel like others are better at it than me. I am not a sheep either, though. I don't like just following other people unless I consider them a good leader. I don't like following rules that don't make sense or are there for no reason, either.
• Are you coordinated? Why do you feel as if you are or are not? Do you enjoy working with your hands in some form? Describe your activity?
I'm fairly coordinated. I can catch well , I have good concept of where my limbs are in sport, I was good at martial arts etc. But I can also be clumsy.
• Are you artistic? If yes, describe your art? If you are not particular artistic but can appreciate art please likewise describe what forums of art you enjoy. Please explain your answer.
Not really. I think because it represents freedom and expression and I would consider myself very inhibited. I would like to appreciate it more!
• What's your opinion about the past, present, and future? How do you deal with them?
I don't dwell on the past in terma of things I have done. I very rarely sit there thinking about regrets etc. I would rather shut down and not think about things that have happened. I am very good at dissociating and feeling nothing about things. Unfortunately due to the level of trauma (my Mum and FIL and 2 grandparents dying, my baby son being in hospital 7 months) and the fact I have tried to just ignore it, it comes out ither ways in my body. Present is ok but I am not very present lol. Future I spend a lot of time worrying about!!!
• How do you act when others request your help to do something (anything)? If you would decide to help them, why would you do so?
I have a tough life tbh as I have two very high energy kids, one severely traumatised with challenging behaviour and I have zero help. So I am generally not in a position to help others and if I am asked I get very stressed and feel bad saying no. If it was just me, and I had no reason to say no, I would probably say yes because it was expected I guess? If it was something I didn't want to do for someone I didn't like, I would be doing it so I didn't come across as rude, I think,.amd to avoid conflict. If it was something I thought I could help with, for someone I liked, I'd say yes because I loved them and enjoyed helping them.
• Do you need logical consistency in your life?
Yes and I get it from my type 5 husband!
• How important is efficiency and productivity to you?
At work, it's important. At home, when I start a job I like to finish..i think that's because my parents always berated laziness..
• Do you control others, even if indirectly? How and why do you do that?
I would say sometimes I steer conversation. Like, ask questions I know the answer to for the safety of that. I don't think I usually control people.
• What are your hobbies? Why do you like them?
• What is your learning style? What kind of learning environments do you struggle with most? Why do you like/struggle with these learning styles? Do you prefer classes involving memorization, logic, creativity, or your physical senses?
I learn very by rote, just keep reading and listening until it goes in. I did better in school than university as I didn't like independent study as much, or anonymity, and certsinly not hige classes. I also think there was a level of free thinking that was difficult for me, again due to quite rigid and inhibited thinking but I put that down to my childhood and being used to being told what to do. I still did well but I found it a lot harder. I was good at English, humanities, music. I was pretty good at most subjects but definitely found maths and science harder even if the attainment was good.
• How good are you at strategizing? Do you easily break up projects into manageable tasks? Or do you have a tendency to wing projects and improvise as you go?
I would say the latter. I find strategizing very boring!
• What are your aspirations in life, professionally and personally?
All the recent trauma has changed alllll my plans. I want us to be happy, healthy, regulated. I want to heal my mind and my body, and I want the same for my family. I want to connect with God, with church, with loved ones. I have sort of isolated myself in trauma. I want to move back towards people and experiences that make me happy.
• What are your fears? What makes you uncomfortable? What do you hate? Why?
I have a big fear of being forgotten, or being the least important. Yet I don't like being the centre of attention, or conflict.
• What do the "highs" in your life look like?
• What do the "lows" in your life look like?
• How attached are you to reality? Do you daydream often, or do you pay attention to what's around you? If you do daydream, are you aware of your surroundings while you do so?
I would say I am chronically dissociated. Often mildly, sometimes moderately. At times even severely. It's something that takes a lot for me to come down from. I can't ever remember not being like this.
• Imagine you are alone in a blank, empty room. There is nothing for you to do and no one to talk to. What do you think about?
• How long do you take to make an important decision? And do you change your mind once you've made it?
I mull things over for a long time, and ask for a lit of opinions. But once I've made the decision it's fixed and I know.
• How long do you take to process your emotions? How important are emotions in your life?
A very very very long time. It is extremely difficult for me to feel, I have gone through really awful things and never cried. Most of the time I feel very little.
• Do you ever catch yourself agreeing with others just to appease them and keep the conversation going? How often? Why?
Yes occasionally. Usually I will put my point across though, but diplomatically so they don't feel judged.
• Do you break rules often? Do you think authority should be challenged, or that they know better? If you do break rules, why?
I don't break rules very often, but I do find rules that seem silly, or set by people I don't respect, frustrating.
I would say I'm quite chameleon-like, for survival, and also it's hard to even determine what my main motivations are. I have tested 4w5 multiple times, and someone I know who has done the course typed me as a 4. I have others assume I am a 2 because I'm a nurse. I think my motivations lean more 4 but I'm certainly no artist or creative!! I just don't really think I present that way to others. Like I look quite ordinary and go to effort to blend in and not be conspicuous. But one of my biggest fears is being forgotten or unimportant, this keeps coming up for me. I also hate following trends and fashions, doing what others are doing. I like to self select obscure authors, obscure music that others my age wouldn't be interested in. I view my personal and spiritual journeys as really individualistic, I take them really seriously and constantly weigh up my truth within them. And as I was sort of trapped and frozen within my childhood I dreamt of a future me that would be truly authentic and free.
My Mum had us on diets as toddlers
My sister and I were just talking about a conversation she and my aunt had recently. My brother is the golden child, and he gained a lot of weight as a teenager and he will talk about this stage and being overweight, and my parents will insist he wasn't at all, but that he just had a little puppy fat. And my Aunt said yes and it's ridiculous they saw him as flawless, when your Mum put you and your sister on a diet at 2.5! This is well known in my family. My Mum fed us milupa, we got "fat" and Mum put us on a diet and started swimming lessons and we lost all the weight. And Mum would watch family videos and say "look how much your Nana was feeding you there?! That's how you got fat!!" And she'd see a picture of us at that age and say "oh that's the stage when you were fat and I had to put you on that diet". And my Auntie said we weren't fat at all, we just looked like three year olds and who the hell puts kids of that age on a diet?! Now I am quite slim, have been most of my adult life, but when I gain weight, I am very hard on myself. I have a sensory aversion to skin touching skin, I hate the sensation of fat on my body. And when I'm stressed the first thing that goes is my appetite. When I feel out of control in life, I have an urge to control my food intake better. I just had never drawn a link to this. My parents weren't generally critical of our appearance in terms of weight but I guess from the age of four my sister and I were slim. My Mum made a big deal of the fact she didn't have weighing scales in the house and didn't believe in diets and wouldn't teach us that. But I feel like she already did at a really impressionable time 😕.
Clasped paws of a sphynx
Careful predator biding
His time and then POUNCE
I am not diagnosed with fibro but I"ve never really got to the bottom of my symptoms. They started around 3.5 years ago. This was about a year after severe trauma (my baby son was in hospital for seven months. A few years prior to that my Mum had died suddenly.) I started having gnawing pains in my abdomen, cyclically. Always related to stress, emotional distress, and sometimes hormones. At this time my blood pressure dropped too (90/60 when it used to be 120/80) and my WBC count dropped a little below par. Around 3 years ago, I had a ?appendicitis admission where I stayed in hospital 3 days and my inflammatory markers were very high and I had a fever and they never found anything. On this episode, I felt a recurrent cramping pain in upper abdo, but with no gastro symptoms, seemed to be related to fascia and abdominal wall. It was 10/10 pain I needed morphine for, and it descended into my pelvis and felt like a cord between my pelvic floor and my upper abdomen that was pulling tight and drawing both together. I have similar now, but with 6/10 pain. And I've just checked my temperature and worried as I have a low grade fever and concerned it'll start again. Does this sound like anyone else's experiences? I have had maybe 15 flares in the last 3.5 years, most of them milder than this. Most of them are triggered by contact with my Dad, or stress of going to work. Those are both very triggering for me, even though since he remarried my Dad is ok and my kids like him 😕. I don't generally hurt elsewhere so far, but am often fatigued and find exercise an ordeal where I'll often get very run down and feel rubbish after it. Anyway thank you for reading!
Bear with me because this is so hard to explain. I have what I call abdominal flares and they are generally brought on by emotional distress combined with everyday stress. They have started happening since my baby son was critically ill in hospital for many months, not long after my Mum had died. So it's trauma. And the main trigger is seeing my Dad, weird as that sounds. I have a lot of trauma related to him.
So basically I will feel cramps in my upper abdo. But the pain is not a gastric pain, it seems to be outside the organs and I have no gastro symptoms at all. The cramping feeling will pass downwards and connect with my pelvic floor. It honestly feels like there is a string between my upper abdomen and my pelvic floor tightening and pulling them towards each other, I have that feeling intermittently. The flares usually last 2-3 days. And my abdominal wall feels very tender before long, like I have done 3000 sit ups. The pain is 4/10 continuous and during a cramp usually 6/10ish, but has gone up to 10/10 when I passed out in hospital once. They did lots of investigations but never found anything. Can anyone relate?
I am nearly 4 years in and haven't felt this attached for ages! I am going on a family holiday over the weekend and missing my next session with her and that feels really hard right now. Does this feeling ever end? I can't imagine ever being able to stop working with her the way things are now.
Does anyone have this app on android? If so do you know how to get the countdown on my home screen? As this was the feature I thought would be most helpful for me.
This is what I've realised. I don't have an issue with not being in my therapist's life, or her having other clients, her very minimal self-disclosure and things like that. I think the main thing I find annoying is that I am a good judge of character and hypervigilant in this regard, I suppose. And I size people up by sort of triangulating their interactions with me (words and actions) their interactions with other people, how they act in a range of situations, and how other people react to them. In the therapy room I have a fraction of that information. And I know that's because it's supposed to be about me, which tbh I take full advantage of and enjoy. But I find it bizarre that four years into therapy with my very compassionate and attuned therapist who I am very attached to, I couldn't say with certainty whether she is an introvert or an extravert. That's crazy. For quite a long time I assumed she was quite a conservative person, and from my own experiences I extrapolated that that would mean she would be judgemental about certain things. It took me a while to realise I was completely wrong about that in every way. I think I've realised that what I have always thought was intuition, has actually always been a rapid-fire jigsaw puzzle fueled by mistrust and well-honed hypervigilance, that is not available in all settings, and definitely not here.
I wrote a post about this yesterday that I removed because it didn't really get to the core of what I wanted to say. But basically I'm four years into therapy and due to trauma and grief etc during my therapy, and before it, I have often not been stable enough to do deep work. Now I finally am starting to feel stable enough, and I have a chronic sense of urgency so I always beat myself up when I talk about day to day stresses and not trauma processing. And I still don't feel much, etc. Yesterday was a talking about stresses session. (And to be honest my day to day stresses are also pretty significant. I can think of 4 things I deal with every day that would be primary reasons to go to therapy, even without all the big T trauma I have experienced).
I came away and felt a bit frustrated. But then last night I had a dream about my therapist. We were supposedly having a session in her house, although it didn't look like her, and it definitely didn't look like her house. In retrospect, it very much resembled my childhood house. It was quite messy, but kind of in a cosy way and I felt like it was intentional for me to feel at home. And she was sitting on the floor and I was sitting on the sofa. I can't remember what we were talking about, but it went on for a long time, and i eventually realised that I was lying on my side on her sofa, basically curled up in a foetal position. And I jumped up and apologised for being so rude and having my feet up on her sofa. And she gave me a look which basically said "Come on, you know I don't mind that, this is for you!!" And then i looked down at the sofa and said "Oh hey, you have the same sofa as my Mum!" But then I realised that the stripes on her sofa were the other way round.
It was such a weird dream. But comforting and attuned. And today i have had a little cry. I just felt a bit more than normal and a series of events happened and I felt sorry for myself and cried. Which I literally never allow myself to do. And I guess I just realised that all the validating little conversations about day to day stresses, and feeling heard, have never happened before with anyone else. And certainly I received the opposite from my own parents. And I need that *so much* to heal. So however I show up, and however long it takes, it is working.
I've been working with my therapist nearly 4 years. Plan was to process loss of my Mum and recent medical trauma from son in hospital for many months and ptsd from that. Digging deeper realised I had 6 ACEs, not a great childhood. Started opening up about that but also then suddenly lost my Nan and FIL and around that time by son who had been ill diagnosed with developmental trauma and he was +still can be extremely aggressive. We started therapeutic input for him, he started school in September and it was horrendous and very difficult to navigate (kept getting suspended, had to drop him down to half hours etc). And my husband pretty much had a breakdown having to try to grieve his Dad while living in a battle zone with my son. For all those reasons I recently gave up the job I love. Obviously huge transition.
Anyway, now with no job even though looking after my kids and especially my son is a *very* full time job, in the last few months the dynamics are better in the house. I have snippets of time to myself now that I haven't had in the last decade. I feel like I'm now putting pressure on myself to feel the things I have never felt (I have barely cried through any of this stuff, mainly dissociated). But I feel like in therapy I'm in a rut of talking about day to day stuff (which realistically is very stressful stuff not humdrum. I know that other people go to therapy to help navigate having children with trauma alone.) But I don't know. I guess I am literally just starting to stabilise. Maybe I need to just go easy on myself. I just really want to learn to feel again. But I'm scared of that too.
It's a long story but my carer's allowance has been held for 10 weeks now due to my transparency and their lack of. I have regularly called to have this expedited because we are really struggling on one salary (again long story but we have gone through so much in recent years and all of it has drained our savings repeatedly and I just absolutely refuse to knock out my savings every single time we have life-threatening situations when the government should be supporting us!!!!! I have already had to give up my job for the third time to support my son, is that not enough?!!)
Anyway probably 6 weeks ago I first asked my MP to write to DWP. I have heard that this is the holy grail, the only way to get to the bottom of anything. I have seen people write "Once I involved my MP it was sorted in a few weeks". Well, nothing here either! He's not a good MP but I swear they're supposed to listen to him?! He just keeps saying he hasn't heard anything yet!!
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.