Staying/Getting/Doing Well – Moving goalposts or fixed target?

[Paw Prints]

Hi, this is my first post, though I have been reading the forums for some weeks. I’m probably expressing myself badly when I say that I have found reading about other people’s journeys reassuring. Finding a community of people who “get it” even when they have a wide variety of experiences and lives lived is not something I thought I would ever find.

Though people talk about getting well & there is a section Staying Well, I’m curious as to what this actually means to other people and how they manage their expectations. I noticed some people refer to being well as ‘being like themselves before they got ill’, whilst others don’t express an exact aim.

My idea of being well has changed over the years. I was first diagnosed as an 8 year old child back in the late sixties. The doctors told Mum that the voices in my head & the sudden crying bouts were because I suffered from ‘nerves’ & I was given meds to calm me. Of course such things were not discussed back then & I was told not to talk about it to anyone, not my school friends nor siblings, just Mum. For decades after my idea of being well simply meant being able to hide my illness from others.

A number of events in my life caused my illness to worsen, until some years ago I became so ill I needed to be hospitalised for my own safety. This lead to my current diagnosis of Major Depression, Anxiety & PTSD. I’m no longer in that dark place, but each day is still a battle (though I can now believe in a future). For now only my siblings & one friend know about my illness, though some things they still don’t know.
So, what does ‘being well’ mean to me, it is ever moving goalposts. If you had asked me 5 years ago would I be as well as I am now I would have thought it impossible as I couldn’t envision a future. If you had asked me last week (during one of my down periods) I would have said my progress was all an illusion & I was fooling myself that things can get better.
For now my idea of being well is being able to believe that things can change for the better, that I will one day be able to manage the everyday things like housework, caring for myself & caring for my dog & maybe, just maybe I will even be able to enjoy myself.

Paw Prints
**I took the tip to give myself time to write my post by writing on a word doc & then paste it.

[Paw Prints]

Good Morning ER,

Well after spending most of Friday in bed, I have been pushing myself to be up & about during the day regardless of how much my body wants me to sleep during the day.  So today is day three & I am up & about already even though it is just after 5am as I daren't let myself go back to sleep as I would risk sleeping the day away.  I did manage to get some small things done both days I've been up despite being very tired so that is good.

I can understand you not wanting to discuss DID outside of the safe mental health spaces, I am still very careful with deciding who I disclose my mental health issues to.  It would be lovely if society was nicer & that wasn't something we need think about.  

When you describe "he took over and I could only watch distantly as if outside my body, no longer able to control what was happening"  you are describing something similar to what I used to experience in my psychotic episodes.  I used to have a 'voice/person' who from time to time would takeover.  I used to describe it as like being in the drivers seat, but finding the passenger had taken full control & I just had to sit there & watch while he did or said things I wouldn't normally do or became hyperactive.  He has been missing ever since I had the ECT & started my anti psychotic meds.  

It is a long weekend here with the Melbourne Cup, so of course my internet isn't working during daylight hours as there are tourists about.  I think it is about time for me to put in yet another complaint as this isn't good enough, I'm not living back of Bourke for goodness sake.

Hugs

Paws

[Eagle Ray]

Dear Paws,

I agree, that is not good enough for the internet to not be working when there are a lot of tourists about. The network used to go down here more often, but fortunately it rarely happens now. They have done work on the towers a number of times. Occasionally when talking to my psychologist on Telehealth it does drop out, or sometimes I lose the visuals or it goes fuzzy. I was talking to a lady in an op shop the other day in a neighbouring town and she was saying they lose their Internet for extended periods based on the spot they're in. She said it took awhile to get Telstra to look at it, but someone did actually come out and help sort things out in the end.

What you describe with the car analogy and feeling like you have become a passenger while the other person takes control is an extremely common analogy given by people with DID. When I first started hearing a voice in February this year, I really didn't know quite what was happening. The voice was supportive and turned out to be a particularly caring alter in my system. It felt like a spiritual phenomenon in the beginning, but then I started to wonder if it was like some kind of psychosis. Then I did the Dissociative Experiences Scale test online and scored very high. The dissociative experiences outlined in the test I realised were very familiar lifelong experiences I've always had. Then, as different alters emerged over time, it became apparent that they were logically connected to early childhood experiences, and had always been there as an adaptive survival response.

I think the changes to the brain that occur in perimenopause were a factor in the more obvious emergence of the alters in my case. I have listened to several podcasts now with women who had the exact same experience as me where their DID suddenly became overt instead of covert about the age of 50. But it is the same for some men too, and I read the autobiography of Robert Oxnam and for him he was also at this age when he learned he had DID. The way DID works is to hide the dissociative system even from the person who has it. But sometimes it will be more obvious at a young age. It varies between people.

I do wonder, from what you described in your original post, what was driving the presence of the voices you were hearing as a child. From what I have read, the voices in psychosis tend to be threatening and experienced as external, whereas in DID they are more internal and not necessarily threatening. Sometimes there can be an altar who has some challenging behaviours and emotions and represents a trauma fragment, but as you work with the alter they begin to respond and heal within the system as they begin to feel heard, supported and safe. Dr Mike Lloyd from the CTAD Clinic has some of the most helpful and practical advice for working constructively with alters. I did a webinar with him recently and I'm doing another in a few hours time on collaborating with alters. There is more help and information out there now for people with DID but there was very little in the past. It is stated that it affects about 1.5% of the population, but most people in the field think there's likely a lot more, that's just the official figure that's been measured.

My internal system is like a family now. It's certainly a bit dysfunctional at times, but the parts are doing their best to function and many of them are collaborative. I have a lot of co-consciousness with them and can have extended conversations at times. One of them, T, has been struggling a lot lately and he needs a lot of co-regulation and support. I have adapted quite quickly to their autonomy in my system and I'm aware of how important it is to work compassionately with them. So with B, my 14 year old, I have managed to talk to him about his tendency to be so hyper enthusiastic that he gets impulsive and takes over at times. He doesn't mean to, it's just an automated survival response from the past. He's slowly starting to get it a bit, at the pace you would expect for a 14 year old who is still some ways from full adult functioning. I love all the parts very much and want the best outcomes for them.

I wrote a lot again! It is a sunny, lovely day here. I hope you are doing ok with your day and able to do some of the things you would like. Take care and I hope you can find some things to enjoy in the day too. Big hugs, ER

[Paw Prints]

Hello ER,

The voice I used to hear was mostly in my head, though sometimes I could hear him talking coming towards me & he would start whispering in my ear before he would enter my head.  As a child I called him the monster because he was so scary & I still think that is the best description for him.  Mostly he was pure negativity & cruelty whispering away telling me I was to blame for everything bad that happened to anyone else I knew, that I deserved anything bad that happened to me, telling me to harm myself or that it would be better if I no longer existed.  He was never there 24/7 often I could go a couple of months without hearing him & even when he was present he would only be there intermittently just a matter of hours at a time.  Even as an adult I had to fight to not have his version of reality overwhelm me.  Having him take control of my body wasn't a common occurrence but frightening when it happened.  

Well I'm up & out of bed for the day, this makes day four.  I did manage to do a few little things yesterday, but I found myself fighting how tired my eyes were which made it hard to literally focus on things.  I will pop a load of washing on this morning, plus hang it out, that is my chore for today & anything more I will count as a bonus win.

Hugs

Paws

[Eagle Ray]

Dear Paws,

That would have been really scary for you as a child. I feel for you so much that you could not talk to anyone about it as a child either, that you were told to keep quiet about it. I do feel that can make those experiences worse, as I think to share them and be validated and understood can often begin to alleviate some of those experiences or reduce their impact. There is a really good TEDTalk online by Eleanor Longden about her experience of beginning to hear voices. The voice was initially a neutral one and she was curious about it. However, once she told a GP it all went downhill from there because his reaction and everyone's afterwards was so negative and pathologising. The voice then became harmful and threatening. She went through a very rough time, but eventually found some good help and began to turn things around. She then got her Masters in psychology and is now a major researcher on voice hearing. While doing her exams, the voice even became an ally and dictated the answers for her.

In DID the voices can be threatening where they are an introject from childhood traumas. So, for example, Robert Oxnam said in his autobiography that he had a part called The Witch and she would tell him how bad he was and how he was to blame for things. However, through working with his psychiatrist, and with his own inner team of parts, The Witch transformed into a lovely, compassionate alter named Wanda. I have a similar situation where a current part is an aggressive thug. Initially he appeared as a fragment only a few months ago (like an energy), then an arm that would punch and most recently now a distinct identity - a big guy who looks like a hitman and wears a dark grey suit. I've worked out who he is. He is a personification of my dad's violent behaviour. My dad started to suddenly and unpredictably hit me from the age of about 3. This part, I have learned, is not nearly as sinister as he seemed earlier. He is just my dad's unresolved rage that he projected onto me. It was mindless rage, so this part is just not thinking. Another part in my system is starting to provide guidance to him and I am actually quite confident that he will integrate and stop being violent. I think he may even become an ally and protector within the system.

Working out what is happening with these things is difficult and confusing isn't it. It is terribly confusing when you are just a child. I wonder if your voice was even an intergenerational trauma fragment? I had that with my grandfather's war trauma and a specific incident that played out over and over in me from when I was a small child up until this year. Finally, working with two of my alters, we actually healed this grandfather part. I knew nothing of my grandfather's war trauma until I was a young adult when my dad told me about the incident. My dad had recurrent nightmares about it right up until he died, so weirdly both my dad and I carried this experience. Just a few months ago we (myself and inner team) completely healed it and the traumatic visions I've had since a small child have just totally gone. I started by talking to my grandfather altar with loving kindness and letting him he's accepted, despite this horrific war incident he was involved in which was causing him great guilt and self-blame that was then directed outwards in attacks. Then one of my parts, D, just held him with loving kindness for 3 days while he went into a deep sleep. At the end of it, you could tell he was okay again, and he actually left with a child version of my dad, things having healed for my dad as well. He has not appeared again since. It was really incredible. In my case, these are not really hallucinations or delusions, as much as they sound like it. They are intrapsychic processes intermingling with memories and consciousness. Just as intuitive, somatic approaches can heal the nervous system, I have found the psyche can heal in a similar way when attended to with love, presence and validation. It's not always easy though, and I continue to work with different parts in my system on multiple issues...

[Eagle Ray]

Sorry, ran over word count. Hopefully ok to briefly continue...

I'm glad the ECT and antipsychotic meds have given you a reprieve from the voice/person. I've read how there can be various contributing factors to psychotic episodes, from infections, epilepsy, autoimmune conditions, chemical imbalances, hormonal changes, stress and environmental factors. I wish there was a lot more openness in society about discussing things like psychosis and voice hearing, and also the experience of having dissociative identities. In various other cultures, these are not taboo subjects and are well integrated into a kind of framework for understanding human experience.

Good on you for getting your washing out. I did mine yesterday and it is similar for me - a major achievement that takes quite a bit of energy. Well done on being up early for day four. I hope that may help in eventually getting good sleeps at night. Take care and warm hugs, ER

[Paw Prints]

Hello ER,

This morning makes 6 mornings in a row... whoo hoo...  though I have been awake all night so it was easy to get up today as I'd had enough of just laying there being unable to sleep.  

Given how well my anti-psychotic meds have worked, I do think my psychotic episodes were mostly chemical imbalances.  I can't completely rule out there being a trauma related aspect to them, nor can I rule out other brain issues having some impact such as my epilepsy or the lesions I have on my brain that affect my memory, my tendency to get migraines or even the severe headaches I would get as a child.  I still have phantosmia where I smell things that aren't there & I do still occasionally have auditory hallucinations where more often I can hear very faintly what sounds like an old fashioned BBC news reader reading the news or sometimes what sounds like someone sending morse code.  They never last more than about half an hour & they don't bother me except when the smell is like something burning.   No I have no idea why a BBC news reader either 🙉🤔🤪

It really does sound like you & your internal family are finding more & more ways to help & support each other.  I am so touched by how your grandfather alter was able to be cared for in such a gentle & compassionate way by all of you working together.

How is your Carpel Tunnel Syndrome lass?  Have the splints made much difference?  

If you want a chuckle you can picture Paws as she wanders throughout her house today tossing her head about like one of those shampoo ad models tossing their head to show off their freshly washed hair.  Why you ask!!  You may remember I bought some new clip on earrings a while ago, well I'm going out for lunch on the weekend & want to wear one of them, though I haven't decided which ones.  But first I have to wear them around the house & subject them to odd movements to make sure the clip bit is strong enough to hold them on while I'm out & about.  I have bought some in the past where the clip simply didn't clip tight enough to hold them on for very long.

Looks like it might be a sunny day here.  I hope you get some sunshine

hugs

Paws

[Eagle Ray]

Hello Paws,

That is so interesting about the BBC news reader. I read about a woman who actually has a brain that picks up specific radio frequencies, so she can hear what's on the radio, even when the radio is not switched on. She will be able to say what song is playing or what is being talked about and it turns out to be correct. The brain is fascinating what it does isn't it. I have a friend who has phantosmia and she has sometimes been worried when she has been somewhere like in a movie theatre and she has smelt smoke and thought there was a fire. She'll say to her husband, can you smell smoke, and he can't smell it. That's when she realises it's the phantosmia again. Yes, it does sound like the psychotic episodes are linked with chemical imbalances if they are successfully eliminated with the antipsychotic meds. It's really good that you found something that has worked.

Well done on Day 6 getting up early. Like you, I have had a sleepless night and also ended up getting early because of it. I'm having a very difficult time with the part that is blended up with me at the moment. He is the part that has always previously functioned as my executive function, holding everything together. But he's really collapsing in this role now, and that can leave me feeling completely overwhelmed when I feel those emotions. He is the one who the person at Blue Knot helped me unblend from last week. But he's not doing well again. I spoke to someone at Lifeline this morning who was so helpful. He knew little about DID but was really understanding and interested in it. He also really understood about me feeling isolated in a country town. He is from a small country town himself and said he knows the social dynamics very well that I was describing. He totally agrees with me that Melbourne would provide opportunities for a safer, more inclusive environment where there is much greater probability of me finding people I can connect with, as well as the right supports for the various things I am dealing with. That conversation helped me a lot.

The carpal tunnel syndrome has gradually improved but was a bit worse again in the last couple of days. Against the advice of the occupational therapist, I did pull out some weeds two days ago, and I know that has made it a bit worse. It's difficult when you live in a strata complex and you are expected to have a certain level of maintenance/presentation and it's brought up at strata meetings. People definitely don't care if you have a nerve pain issue. The splints have definitely helped, and I know I wake up in less pain in the morning because of them. I am driving to another town this morning to see the occupational therapist one more time. I can't afford to see her again after that. I can't afford to see my psychologist until next year again either. I'm trying not to stress about money and looking to where I can save in different areas.

Yes, you have given me a chuckle with your head tossing to check how well the earrings stay on 😂 You can be extra melodramatic and pretend you are in one of those shampoo commercials 🤣 I hope they stay on successfully. It will be nice to go out for lunch on the weekend. I hope you have some nice weather. It's cloudy here today and still relatively cool. I better go and have my shower to get ready to go to the other town this morning.

Wishing you a lovely day!

Hugs,

ER

[Paw Prints]

Hello ER,

I could never live somewhere with strata or homeowners association rules I would always be getting into trouble for not meeting their standards.  I like having wild patches for the wildlife regardless of what the neighbours think.  It is my only small streak of rebelliousness, which has only gotten stronger the older I get.  It is the main reason I've crossed retirement/aged community places off my list of possible types of property if/when I need to move from here. 

I can give you a get out when it comes to removing weeds... the dictionary definition states a weed is a wild herb growing in a place it is not wanted... all you have to do is say I want this plant to grow where it is & by definition it stops being a weed.  Well that would be my excuse & I'm sticking to it 🤣🤣  Seriously if the people in your strata are that upset by a few weeds when you clearly are wearing splints then they need to take a good hard look at themselves.  Any decent person would ask if you needed any help with things while you are limited with what you can or should be doing.  Please don't do any more weeding.  If anyone says anything tell them you have tried previously but you can't manage it until you get the splints off.  If they still grumble then tell them if it bothers them so much they are most welcome to weed it for you.

With the alter that is currently struggling, am I understanding you rightly that it is when he blends with you that you are overwhelmed by his emotions? Or are you finding his collapse & distress plus his current inability to maintain the overall executive function overwhelming?  

Wet & very windy here today, but surprisingly warm.  It was even very humid in the early afternoon when there was a break from the rain & the sun tried to break through the cloud cover.

I'm counting today as day 7 even though it was 10am before I got up, after getting no sleep the night before I think it was ok to sleep a bit longer last night.  I hope you managed a good nights sleep last night to make up for the sleep you missed.

hugs

Paws

[Eagle Ray]

Hello Paws,

Thank you, yes, I can argue that I am cultivating wild herbs 🤣 It is actually written into the signed agreement with the strata company that keeping the external presentation of the units is held to a certain standard. If someone has a go at me at the next strata meeting I can argue my case with regard to my physical limitations. There is one person at strata meetings who is particularly prone to this sort of attack on others. Unfortunately, I am in a position where I will be unlikely to ever live on freehold property outside of strata, unless I move to a more remote inland town, but then I am in the position of struggling with isolation again. To go to Melbourne or Perth, the only options now are a small unit. What I have to be careful about is looking at the strata fees, because some types of buildings incur much higher fees, especially if they have maintenance costs associated with services like elevators or other facilities within the building. The units here are old and don't involve complex shared facilities. In about two years, I know it's going to be really hard for me to cover the strata fees and council fees here. I have to sell and downsize to a smaller unit. I know it isn't even a choice now.

I'm also aware of how my past experiences have created a lot of fear in me that something bad is going to happen to me in relation to others if I can't achieve certain things. As a child if I did not comply with precisely expected outcomes, I would be given an extremely hard time in ways I won't describe here. It could be something as simple as trying to dry the dishes while also watching something I wanted on the TV. That just wasn't allowed, I had to stand next to the dish rack while drying them and not walk between there and the TV. The consequences were horrible if I didn't follow this requirement. So I have realised that is why I get so stressed about doing things according to specified requirements. I put myself under huge pressure all the time out of fear of what will happen to me if I don't meet others' expectations. It's amazing how much these things still affect you so many years later. I am really trying to learn to give myself permission to do what I need for me first.

In relation to the alter who has recently been struggling, the greatest difficulty is when he is blended up with me and then I am swamped with his emotions in a really overwhelming way. However, when I can externalise him, which happens when I can see him in my minds eye, I can then communicate with him and help him. However, I can still feel emotionally affected and it is painful to visually seen him suffer. But I know just to be unconditionally present with him and help him to know that he is safe and supported. Others in the system sometimes help me with this too. His inability to maintain executive function is not so much the issue. It is more his difficulty in letting go of the need to be so focused on executive function in such a hypervigilant way. There is a need for him to let go of gripping onto this role for dear life, and realise that it is possible to live and enjoy life without this desperate struggle and fear. So he needs tonnes of reassurance, but there is also a lot of grief coming out about how hard things have been, and what was lost in the past because of this struggle. We want to go forward living much more peacefully and at ease with the world. 

That is fantastic that you are up to Day 7! Staying in bed until 10am is totally acceptable. It is interesting that you were getting the mix of wintry weather while it is also warm. I feel like I might get that sort of weather while in Melbourne. I certainly know that I have to pack a range of clothing for different conditions. I know that in Melbourne it can be very hot one day and like winter the next. And, of course, even within one day it can change a lot. I really am looking forward to going there, even though there is some anxiety. T, my most vulnerable part right now, has been melting down about it, but even he is starting to look forward to it a bit now. He is doing his best to let go of being fearful and know that he can enjoy things and not be so stressed.

Sorry, I wrote a lot again 🙈 I hope today is a good day for you. Take care dear Pawsy 🤗

Hugs,

ER

[Paw Prints]

Hello ER,

I had a lovely catch up with my friends yesterday.  Despite my always saying that I don't mind the 3 hour drive the group consensus when it was all being teed up was that lunch this time it would be at a large rural town about roughly halfway, so I only had an easy drive & no city traffic which was sooo nice.  I hate that I find being around other people, even when it is with friends or family & I've enjoyed myself, ends up taking so much out of me.  I find I need time & space in quiet & stillness afterwards to settle me.   

There being strictly enforced rules about how things must be done was part of my childhood too & you are right it is hard to get past that form of indoctrination.  I think it must be even harder for you as the punitive response you endured was much harsher than anything I received at the hands of my parents.  I have found it is possible to make the changes & break away some of that pattern, even if just in small ways to begin.  As I mentioned recently I now leave patches of my garden to grow wild & this was/is my first ever rebellion against the rigid rules & duties of my childhood.  I must admit a small part of me still expects the criticism, judgement & subsequent punishment, but  the bigger part now says 'it is my garden & I it suits me'.  From there I have gradually over the years been able to defy other rules & now there are quite a few things that I can do to suit me, no longer worrying in the slightest about meeting someone else's standards.  

I should mention, my earrings did stay in place.... but the clasp on my necklace broke🙈🤣  

Hugs

Paws