hsphaven

This week has been the lead up to my period, so it has had a nasty edge to it, with my hormones like wood to the fire. I probably wouldn’t remember everything if I had not been taking notes, which my physiotherapist has me doing now.

Last weekend I sent Delmont Private Hospital some feedback:

“Hello to who it may concern. I was staying in Delmont (Ashwood ward) on Wed 4th Dec. It was my second day there. My stay had been going very well, and my admitting nurse Alana was one of the best nurses I’ve ever had during a hospital admission. On Wed 4th of Dec I received some distressing news from outside Delmont which put me into a very bad state. I was told some very unhelpful, trauma uninformed and uncompassionate things by some of the nurses which only escalated this state. Things such as telling me to get up off the floor when I had entered a collapsed-immobility state (no understanding of the fight, flight, freeze, fawn and flop responses to trauma), but worst of all was when a male nurse told me to stop screaming as I was “disturbing other patients”. I wasn’t even in a communal area but was in my bedroom at the time. This comment which showed absolutely no compassion for me escalated my distress, and in my highly reactive state I ran out of my room and tried to abscond from the hospital as it no longer felt like a safe environment. As a result, my doctor put me on assessment order. This decision was not in my interests, as I have experienced much trauma at the hands of public hospitals which is why I pay for private health insurance. The assessment order only gets revoked and I am given a shorter stay than what I would receive in a private hospital. I also lost my room at Delmont which was actually tolerable for me sound-wise (I have extreme sensitivity to sound) and didn’t even get a proper room in the public hospital. I was left behind a blue curtain during my entire stay there having to listen to everyone else’s conversations on the ward.

Some of the female nurses who responded to my distress at Delmont were lovely. I wish I could remember everyone’s names. Maybe there was a Julie? I’m not sure. In a couple of hours I was able to share with her more than what I’d probably share during an entire admission. In contrast to the male nurse, she had compassion, competence and understanding of trauma. She was able to de-esculate my distress to the point where I believe I did not need to be sent to a public hospital and could have been managed at Delmont. Sadly I was still sent away to a public hospital. This nurse kindly walked out with me to the ambulance and I was touched by her kindness towards me.  

I would like this feedback taken on board by Delmont. It would be good if the nurses mentioned could be identified if possible and feedback passed onto them. I feel some nurses, such as the male nurse who just told me I was “disturbing other patients”, need to receive better training on trauma and how to respond to a distressed patient.”

I shared the feedback with my Complex PTSD group (which I admin), still feeling very raw. To my horror, instead of receiving support, I got this reply back from a member:

“Well, you probably were disturbing the other patients, who most likely also have experienced trauma. Sounds like you had a pretty good place to stay but couldn’t quite abide by the basic rules. I know that sounds harsh – I have CPTSD & I have also worked psych”

“That is extremely harsh!” I wrote back. “I can’t believe such a comment came from a person who supposedly has CPTSD”

“it’s an honest response – you probably were upsetting other patients, in a group space such as a ward, you need to consider that” the member replied.

“You think CPTSD stops and gives a damn about “basic rules”?” I said.

“Distress tolerance teaches us yes, we can control these outbursts & be mindful of the situation we are in – so yes, be accountable,”

“What a load of cock and bull,” I wrote. “You really think someone who feels they’re being attacked by a sabertooth bear is gonna sit down and make them dinner? [or a cup of tea!] Like I mean that could be one possible way of getting rid of the threat, but not always the option our survival system chooses. And then you think they should be held “accountable” for their screaming, in a designated “mental health” facility too where they come precisely because they are not coping? I think you are in the wrong group. I will not put up with victim blaming shit here and therapies which seek to silence normal responses to trauma. It is distressing to post about something that is already very raw and then receive such judgmental comments like these. I don’t know why I bother running this group.”

What hurt the most was when other members “liked” this member’s heartless comments. I felt ganged up on. I told everyone that I was thinking of deleting the group as I was disgusted by the judgement and lack of support that exists in so many “CPTSD” groups. All 360 members could burn in hell! Members defended the cruel poster, who I decided to remove from the group, telling me my actions were irrational and out of proportion for a minor “disagreement”.

“There is a line between disagreement and ganging up on a distressed, vulnerable member of the group who has reached out for support,” I wrote. “Done with this “support group”

These comments left me wanting to cry, exacerbated all my physical issues which were starting to get a bit better, and left me scared to open up to the group again or even get notifications from the group. The member who contributed to kicking me to the ground then told me that I should take a break as I obviously wasn’t coping and get someone else to admin for a while. I then had other members lining up for the role of admin like vultures. Members who had never contributed to group before. I had another member try to recruit members for another support group.

I felt these dynamics were incredibly fucked up and bordering on gaslighting. It is something I have experienced before, where people not only deny your abuse but all rally round the abuser and protect THEM. A quote came up on my Facebook feed which spoke to how I felt: “One of the most devastating forms of abuse is when your suffering is not recognised- when people make you believe that you are the problem while mistreating you.”

I ended up creating some new rules for the group. I never thought I needed rules as I assumed people would be on the same page and treat others with kindness, but obviously not.

1. Be kind and supportive: we’re all in this together to create a welcoming environment. Let’s treat everyone with respect. Healthy debates are natural, but kindness is required. Please remember that complex trauma presents differently in each and every person. Please be respectful to everyone no matter how different they or their case may be to your’s. There will be no toxic positivity in this group. Glorifying some responses e.g. people pleasing, and “acting in”, and devaluing others e.g. screaming, is not ok.
2. No hate speech or bullying: make sure that everyone feels safe. Bullying of any kind isn’t allowed and degrading comments about things like diagnoses, race, religion, culture, sexual orientation, gender or identity will not be tolerated. There will be no “BPD-bashing” here. I’m sorry if you’ve had a bad experience with a person with this diagnosis but not everyone with this diagnosis is the same. Some of the kindest people I’ve met who have a strong sense of justice have received this label
3. No self-promotions or spam: give more to this group than you take. No posting/advertising of your personal business/products without prior admin approval.
4. Respect everyone’s privacy: being part of this group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. What’s shared in the group should stay in the group. No taking screenshots or sharing members personal details or posts outside of this group.
5. No blocking of admins or moderators: if you block admin or moderators so that you exempt yourself from moderation, you will be removed (yes, admins can still find out).
6. This group does not promote DBT: we don’t support the use of therapies that blame and seek to silence victims, such as DBT. If DBT has helped you, then great, but dismissing a member’s distress and normal responses to abuse, neglect, oppression, invalidation etc. by telling them to use “distress tolerance” and take “accountability” is not ok. This group also recognises that community/care from others is a basic human need. Isolating individuals and telling them to heal all by themselves is not really what this group is about
7. No harassment / unwanted contact: do not pressure other members into private messaging or a relationship outside of group.
8. Invalidation-free zone: this group does not endorse ignorant, invalidating comments such as “stop holding onto the past”, comparing traumas, or that our fight, flight, freeze, fawn, flop responses are things we consciously “choose”. We are a supportive space for people to find refuge from judgement. I am reluctant to approve posts along these lines as they are hurtful. “Here is the boundary of the circle. Not but love shall enter in. Not but love shall emerge from within.”
9. No ganging up on vulnerable members: this is a support group, and as such, when members turn to the group and make themselves vulnerable, they should not be left even more distressed. Liking unkind responses that violate the group ethos is not ok.

I removed all members who defended the cruelty directed towards me. I did worry I had turned into a bit of a nazi or Umbridge, but I feel these rules are important to protect both myself and others and the vision I had for the group. It is not right that distressed members feel scared to open up for fear of attack or judgement, and I am not the first member to have experienced this. All these rules come from things I have both experienced and witnessed in both this group and other “CPTSD” groups. Sadly, there seems to be a proportion of people who have become hardened from whatever hurt they have experienced. I can kind of see where the phrase “hurt people hurt people” comes from, but I also don’t like excusing or rationalising the behaviour of these people. There are many hurt people who don’t go on to become abusers and instead become some of the kindest people that exist, determined to break the cycle of abuse. 

I since received some more empathetic comments to my original post:

“I’m 58 and have suffered many forms of abuse in my life, starting before my teens and continuing to this day. In my early 50s tramadol was believed to have triggered a movement disorder. However it is still considered a stress response. Looks like I just stepped out of a trench dug in Europe over a hundred years ago. I have had nurses tell me to stop shaking because I am scaring the patients. Very unhelpful attitude. Compassion is my kryptonite. Unfortunately it seems more and more scarce in this day and age.”

“Hi  while it’s true that distress tolerance skills (which not everyone has the oppurtunity to learn) can help towards managing intense emotions, everyone is different. The idea that all breakdowns are entirely a matter of choice or control oversimplifies the complexities of mental health, neurobiology, trauma and physical health factors eg. chronic pain. Some people, like those who are autistic or neurodiverse, process emotions and sensory input differently. They may have meltdowns or shutdowns that are Neurologically driven and not a matter of choice ”

“***TW***

About ten years ago, I was admitted to hospital, after an attempt at unaliving myself by ODing on medication. Completely unconscious at the time, the nurses told my wife at the time to get rid of me…

Just let that sink in for a sec..”

“I’m so sorry this happened to you. Hospitals should be a safe place when we’re in for treatment. Also, regardless of rules, they also know that our nervous systems, triggers and emotional responses can result in disruption.

I’ve never been in a facility that treated a patient that way, and I’m really sorry. I’m not going to even get started on what was said by that other commenter… disgusting. While everyone’s CPTSD may be different, I’m sorry you’re one has included this and I hope they provide the feedback to their staff so they can improve how they can support their patients during moments like these. I think you’ve taken a great approach to outline something to them so clearly that’s been such a horrendous experience.”

Rest of week-

I will now look over my journalling to help me write the rest of this post. On Monday, after Sunday’s drama with the CPTSD group, I got no sleep. I sat up late chatting with one of the nicer group members about Myers Briggs. Maybe he sensed a personality clash between me and the other members of the group. He is INFJ and am an INFP and we clicked quickly. We joked about our personality types:

He told me about “dear kirstin’s” Myers Briggs YouTube channel. She’s done some funny videos about how the different types perceive each other. I laughed at the ESFP’s description of INFP: “I talk to plants, I talk to cows, I talk to pens. I’m anxiously avoidant of you homo sapiens. But maybe if I just got out of my bubble, you could show me what it feels like to be in trouble?” ENFJ’s description of INFP is funny as well: “If I could just get up and do something with my life, I would be way less infuriating to be around.” And also ESTP’s idea of the INFP dater: “Don’t swipe! I have emotional vulnerability.” I’ve got to say there is a kernel of truth in all of them.

I became a little hypomanic, which wore off the next day. I felt horrendous yet everything seemed 10 times funnier, such as this Eugene Yao’s video “ADHD through the eyes of their non-ADHD partner“. I had sleep-deprivation giggles, which is actually a thing.

“When you send the text to the wrong person but it actually makes sense in that conversation too,” I posted to Facebook:

Despite not having slept the previous day and night, I still struggled to sleep Tues night as well. I fell asleep around sunrise and got up around 3:30pm. As usual it was crap sleep, and I rated my mood 1/10 on Tuesday. I also had moments where I felt like I was going to die on Tuesday. My body felt like a cocktail of chemicals.

The next night I didn’t fall asleep until 3:30am. The atmosphere felt dark and heavy. I didn’t know what I was sensing at the time and wondered if I was becoming a little mad. I just felt really on edge and remember shaking and my heart racing as I lay in bed hearing noises and thinking someone was breaking into my house. I wondered if I had absorbed something on Facebook, which I was starting to become addicted to as my life is completely empty with my NDIS worker gone, or whether it was this full on video by YouTuber and musician Esther Joy Lane about what psychosis feels like. It was my first night in my new radiation blocking tent, which is like a swag made of mosquito netting which you set up on your mattress. I was expecting to climb into the thing and instantly feel a sense of calm now that I was no longer being attacked by radio waves. I was expecting my sleep to improve and my tinnitus to go away. If anything, I felt even worse in the tent. It felt claustrophobic, and it was annoying having to zip it completely shut and then unzip it carefully to get out so that the zip didn’t catch on the delicate fabric. I slept inside this swag inside my bed box (a tiny room lined with insulation to block noise). I couldn’t help feeling like a mummy buried deep in a tomb, like a deceased person buried in their grave, or a Russian doll. I ended up taking 20mg of temazepam to help sleep, which did nothing. I then took 10mg of olanzapine, the antipsychotic I spent last year weaning off of, which seemed to knock me out. I had another dream where I thought I’d woken up but found I was still in the dream (something which are called “false awakenings”). I was disturbed in the morning by noises outside such as a loud truck and my neighbour’s electric leaf blower. I still tried to sleep through them and didn’t get out of bed until 4:30pm. My dad commented that it was a “funny night”. He was up a lot in the night and said a member of his support group had asked him how to resist the devil. 

When I got up I had severe abdominal pain, felt weak, faint, breathless, had a headache from the previous day/night and was shaking. I took Panadeine Forte and lay down in my old Alice in Wonderland themed bedroom as it was cleaner than my room with my bed box. My mood increased to 7/10 and my physical issues went away. Early evening my mood dropped again and I was extremely angry that I couldn’t find my camera charger and rose hue lensball. I threw stuff around my house, which looks like a bomb site, and wanted to cry. Eventually I found them. My mood then picked up to 3.5/10, a little higher than my baseline, which was just enough to get in the car and drive to Kmart. I wanted to buy a second clothes rack so I could move my dresses off the couch, and another phone SIM card. On the way to Kmart I saw what looked like a vehicle drive off the mountain where I recently stood, terrified of being murdered in the wee hours of the morning, taking photos of the aurora (a post for another time). The vehicle then disappeared. I wondered if I was seeing things now. I got to Kmart just after ten to find they have changed their opening hours and had closed at 10pm.

I tried sleeping in the radiation blocking tent again that night. I don’t know how my physiotherapist, who says his brother is a physicist and it’s impossible for humans to sense radiation from phone towers, wifi etc., is going to keep a straight face reading my notes about “dark energies”, “false awakenings” and sleeping in a “radiation blocking tent”. He already seems to think I’m bonkers. I have also documented my diet as “sea weed” and “ceremonial cacao”, and I only eat after 5pm.

I had another rough night. I woke up all the time, interspersed with vivid dreams about my family, my NDIS worker and Sara. I had a lot of “head chatter” where I heard random voices in my head. Some were scared. “Make them stop”, they said. I tried to comfort these parts of me, if that is what they were. I felt things crawling on me. I think it was this night I kept seeing flashes of light as well. I got up at 3:15pm and felt breathless and nauseous.  

I reported my mood on Thursday to be “angry” “fatigued” and “low”. The anger is mainly from just being totally overwhelmed. There is a dog over the back fence which has the most annoying, high-pitched bark. It sounds like a wheel which needs oiling. I told my dad that I felt like leaving a letter in their mail box about their dog telling them to shove a mop up it. I spent the entire day in bed, again back in my old bedroom, which a friend described as my “inner child room” as it is full of toys, teacups, and Enid Blyton’s “The Famous Five” collection. I still had a headache, which had spread to my jaw and teeth. I was in a bit of an altered state of consciousness all day. When I got up I was dizzy and my hands started to feel transparent. I felt like I was dying and turning into a ghost. The world felt unreal as well. Thankfully these scary feelings (or LACK of feelings) passed fairly quickly. A few people have told me it sounds like I have influenza or something. 

I didn’t want to sleep in my radiation blocking tent again and migrated to my old bed room last night, spreading my mess and bad vibes to the other end of the house. I took 10mg of olanzapine at 12:30am hoping for a better night. It seemed to put me to sleep last time, but this time it did nothing. I was still awake at 2:30am. I finally fell asleep around 4am, but woke up a lot when I heard my dad, who also sleeps this end of the house and uses the bathroom here. I got better sleep when he left and didn’t get out of bed until 3:45pm. I feel a lot better physically today, but horrible emotionally. My dad asked him to drive him down to the car mechanic’s to pick up his car. The request added to my stress as I have bad driving anxiety and wasn’t familiar with the route. I managed to drive there and parked in the carpark next door. My dad tried to explain how to get out of the slip street. I got out of the car, turned away, started crying, and walked to the exit to see it clearly. I managed to get out ok. I then went on to see my mum, but that was too much. It was too much being asked questions and having to nod my head like an idiot as I still don’t speak. I ended up leaving early. I wish I could give more to my family. My mum continues to struggle with her health. She had breast cancer and then she started getting stokes from the medication given to her to keep the cancer away. She has to get another MRI this week, this time for her leg, as she says there are some lumps under her skin.

“Sure you don’t want to change your mind re MRI?” she texted. “We could do a family group booking!”

Lately it feels like death has been closing in on me. I lost my old psychiatrist. Then Leunig died. The daughter of some family friends died. Someone I know told me that their daughter has been doing a school project about death which has driven her mad. She is now haunted by this symbol of a triangle, square and cross, and now has to take anti-anxiety meds. I’ve been seeing a lot of posts about death on Facebook. Someone in a dissociation group posted about their grandmother, who was their safe haven and a wonderful soul. “And when we visited for the first and only time since coming out as trans she was the only person, despite her dementia getting pretty bad at this point, to never once deadname or misgender us,” the member wrote. Her grandmother is now dying, and this member is scared to call her and speak with her one final time. I’ve been hyper aware of my own mortality, and I’m terrified that I’m going to lose my mum next. I wish I was a better daughter. I would hate for my parents to die and this be their last memory of me: mute, depressed, and not wanting to be around them. I took some dexamphetamine while at Mum’s. I went home to chill and an hour or so later it started to kick in. I felt my mood lift from a 1/10 to maybe a 5 or even 6/10. I felt like doing things again like some photography. It also makes me more outgoing. I texted my mum saying I felt better and asking if she’d still like to go for a walk. She said she’d since been for a walk, but suggested tomorrow. I hope I will be up for it tomorrow. I guess I’m just in grief. It feels like I’m frozen in this kind of sickness amber, as the people with chronic fatigue syndrome describe in the documentary unrest. But sometimes it occurs to me that while I may be standing still, life is still going on around me. People’s bodies are ageing. I want so badly to feel better, not just for myself but to be in a position where I can give back to others more. I do grieve my many losses, including the loss of health and bodily peace. I am pretty fucked up from my overdoses last year. I now have a tremor, which makes me feel like I’ve drunk too much coffee, and makes fine craft projects, which I used to be really good at, difficult now.