A New Start (the way forwards)

I forgot to write about this... I had seen a meme recently in a group for people with chronic pain conditions. It was a quote from a hematologist.

"Chronic pain patients hide it so well, you can't go by how they look on the outside. They have to learn how to function with pain, you can't just roll around on the floor all day screaming in agony.Medical personnel in hospitals don't even realise this. A chronic pain patient can function with a pain level that would incapacitate any other person"

I think this is why we switch so often and are having difficulties stabilizing right now and having one person at the front for any length of time. I think its been a combination of events coming together ..peri triggering emotional instability and the pain and tinnitus levels. We have several conditions that are capable of causing dissociation - hypothyroidism when medication is not right (hormone fluctuations can affect absorption of medication too - we've had to have more blood tests and change doses more often) Tinnitus on its own can cause depression & dissociation and so can constant chronic pain. I've also seen it mention on ME boards and mention of 'menopausal psychosis' on menopause boards... I'm not saying we have that...but with so many conditions that potentially cause dissociation it's probably no wonder its been a major issue for us lately!

We are trying to work out a solution between us.

Jay

I want to write this out tonight so can have a long lie in tomorrow (as exhausted after this last week) and the feelings will have gone by then.

Every time we come back from visiting family there are so many complete opposite emotions.. Firstly before we go Suki are happy to go...sometimes LS is too though she was more triggered by the last girlfriend (of bro). Usually Teen S and Kate and the most looking forward to it.

When its time to come home..Kate is eagerly waiting near the front as close as she can get without taking over the body in anticipation of the goodbye hug as she see's it as 'a hug from her son', though today I also felt a connection with him and the name he calls us by (which isn't our birth name)...on the opposite end as soon as they've dropped us off and left... Bobby and Kit are 'thank god that's over' and can't get changed fast enough! (They're like that with every appointment/event that requires us to leave the house & socialise with people for several hours).

After playing with our dog for a while they all disappear back inside and unless someone specifically wants to watch something, I'm left upfront with a 'cacophony of opposing emotions' which takes some time to subside...Someone briefly feels overwhelmed thinking how would we cope if he passed first and then what if we did and he had all this (junk..in the house) to sort.... and that we should start sorting it and write a will etc... eventually all the thoughts die down but sometimes they can continue until early hours of the morning... winter its easier to get straight to sleep as its cold so get in bed under electric blanket and usually fall asleep...tonight though its really muggy..which makes it difficult to settle and get off to sleep..(hence why I hope to get a lie in tomorrow once I eventually get to sleep!..if I can stay asleep!)...I don't know why all these thoughts and emotions suddenly come at once..eventually we get to sleep but takes a day to recover energy.

Anyway I need to try and get some sleep I started typing this at 8.30pm and its now 9.40pm!
I think typing it out has helped!


Jay



...Anyway 'Suki' has decided they are staying inside for a while, they realise its not as easy as they thought to be the host.. Teen S wants them to remain inside where they can have their own bodies but still 'be twins' ..which of course is only possible in the inner world! ... I don't know when they'll want to try again (at Integration) , though I suspect they will still want to 'visit' when we do get invited out by family. (or he calls by to repair something for us)

He has his own life though, he is not our carer and it wouldn't be fair to be expect him to be. Even Kate agrees with that though I think she would like to see him more often perhaps.

oops didn't realise the editing had gone a bit wrong on the last post (that last para under the signature was supposed to be above it!)

Anyway yesterday nobody did much..I was only one out and slept most of day, other than about 4 hours sorting out Mr Woof and sending a couple of emails. Teaming down here so will have a full rest day, unless it suddenly turns sunny later and Mr Woof fancies a walk. Otherwise just be thinking of some games to entertain Mr Woof. LS likes to play with him, she taught him to do baby sorting puzzles he can pick the right shape to fit in the right hole in the top and the stacking toys where you drop bright colourful rings on a pole. and has a ball maze toy Kit made him...we save them for rainy days like today when we can't be sat out in garden.

I'm not sure whats going on with Teen S (TS) she says she feels depressed and won't say much else. she only wants to be 15 and with her twin on the inside. Kate however would like to feel more useful supporting us in the outside world especially when we have things to deal with. She has chosen to split leaving 'Juno' her 15 yr old self inside with TS so they can remain 'Yuna & Juno' on the inside but her adult self to be available to help and advise me if needed on the outside.

Kit feels Kate is a better advisor going forwards as she has more social skills and carries our autobiographical info for the entire life without the trauma memories.

Kit prefers the inside world, mainly only comes near front to watch Star Trek/Stargate repeats ..or other 70's/80's repeats of Bobby's childhood favourites. They are so alike now with Bobby in adult form it's difficult to tell them apart when they come forwards. Sometimes the only way is the era of the program they are wanting to watch as Kit didn't appear until much later in life.

We think I (Jay) was a split off one of the 'Susans' originally so have more social skills than splits off Bobby given that my individual memories were of music lessons and time spent socialising with particular friends when we were younger...but I was also finding myself at the front randomly after the name change so back when we didn't have our own inner names just got triggered out and responded to whatever the legal name was....

I have actually identified with both! ..whereas most in our system are either pre-name change or post-name change so have only hosted as one or the other in the outside world...Bobby is the only other who was around during the entire early life but prefers the name after it was changed. in fact I think it was their choice! They were seen as a 'tomboy' in the outside world (and have always had a gender neutral inside body too) and wanted a name that could be either a boys or girls name.

When I first came on here I thought 'Jay' was a name I'd randomly chosen to simply mean 'this me here right now, same age as body' as real names can't be used on here, but actually exploring our past I find it was also the name of my favourite member of one of our favourite pop groups when we were young too!

We do actually use the names we use on here as our system names now when communicating with each other on the inside, (though no-one in the outside world knows any of us by our individual system names) Consequently I think we've become more detached from the outside world and anyone who knows us exclusively by that name only, as we communicate more with our system names than we do in the outside world with our <legal name>. It's been like this since onset of pandemic when we were placed in the ECV group and not allowed to go anywhere busy or have people in the house. (I think Kit was fronting at the time and decided we would only make an exception for our sibling to reduce the chances of catching covid)

But sometimes we need to rejoin the outside world to get stuff done,its just that strange feeling when someone (external) asks you your name and for a second you aren't sure which name to give them!

Jay

After a low (depressive feelings wise) week we've finally had some surprising news yesterday! I'd been trying to contact audiology for ages, seems they had changed their email contact since our last letter from them and didn't think to update everyone!

After searching the internet I found ONE email address for the entire hospital ..for feedback and complaints! ... explained difficulties with moulds giving itchy ears and infections but leaving them out leaving us with awful tinnitus, our physical difficulties contacting them (why does an audiology dept for DEAF people, most of who can't use a phone, only have a phone number to contact them! ) and getting there and asked if they could possibly pass the information on and ask the audiology to write back.

Anyway...got an email back from them yesterday...with an appointment for as soon as they can come out and I will be given new hearing aids that will give better tinnitus relief..so we live in hope!

..one down one to go...just chasing up mobility store now as they never got back to us to confirm whether they have ordered the parts (for scooter) or not! ..no idea whether I am waiting for them to just confirm they have ordered or they aren't gonna contact us until they have the parts and want to come out!..as don't want dates to clash, they have just turned up on my doorstep before as its easier (for them) their driver is in the area anyway than to send a message to a deaf customer apparently!

but at least we now some hope that the Tinnitus may improve in the near future which may make it a little easier for us to function!

Jay

It's been a quiet week...mostly waiting for a reply from mobility store, finally got one yesterday for them to come out later this week so managed to sort 2 things out before end of the month!

Kit & Bobby were out for the weekend on Zelda, they've disappeared back inside, LS came out to play on switch for a bit yesterday and Kate helped me do some batch cooking for the freezer. Going to have to be careful with money these next few months with cost of scooter service going out of bank too..

We need to try and find a better TV/Broadband package ours is getting too high from 2 seperate companies each putting their prices up yet again!

It seems it will be me (Jay),Kate and SG on hosting duties for the next month at least. Kit comes out to help but then goes back in. Teen S is resting inside and temporarily dormant until we try and improve our health so she's not overwhelming everyone with feelings of depression.

We're researching inflammation in the body (on a cellular level) as both ME and arthritis seem to be caused by that and possibly the Tinnitus too. Some of it could be related to arthritis being in the neck as we have noticed when its louder on what we call 'the good side' (hearing wise) coincides with when we're laying down or our neck is stiff or achey.

Been allergic to Ibuprofen and having reacted to NSAIDS in the past rules out many options! I've been allowing Kit to take over at night to research as her skills in this dept are way better than mine. Though I do watch and she gives me tips if I'm not too tired, otherwise I leave her to do her thing. Kit and I are developing a good working relationship.

Kate is always pleasant and easy to work with and likes to help when we need to tidy up or do some batch cooking,otherwise she helps look after LS and the others on the inside.

Bobby is more of a challenge as things have to be 'just so' for them to even appear and then they only tend to want to do an extremely limited scope of activities. Mostly lately they are only coming out to watch re-runs of their favourite 70's TV programs..I'm guessing so they can recreate the episodes as Holodeck programs.

Although they do now talk (after being non-verbal for years) they only do so to communicate immediate needs and talk to Mr Woof and still do not really speak just for the purpose of 'social chit-chat' and have no interest in fronting when other 'external people' are present. But relationships and understanding between us and between Bobby and other alters have improved greatly.

I'm still working on the meditation but I can visualise the inner world much better when Kit or Bobby are blended with me and 'send me there'.

For now we are working on improving our physical and mental health and I suspect Teen S will naturally 'wake up' again when we reach a 'better place' health wise. She will be allowed to try the re-integration again in the future if she wants to,but we'll have to see how much difference the hearing aids make and whether we can get further reduction from finding something that works for inflammation/neck pain etc (symptoms are usually worse over winter when its almost always raining or cold up here until next spring!).

Jay

We do hope that things go well for you regarding both the hearing aids and the money this winter. It's really awful how many companies are raising rates at a time when people can't really afford them.

Be well,
Violette

well its our dogs birthday today he's 11!

Kit surprised us by coming out in a good mood this morning and willing to take us all to the lake for his birthday (she'd stormed off inside yesterday after the repair guy had turned up with no parts).
She said she wasn't going to spoil Mr Woof's birthday but said she wanted another opinion on our scooter as she doesn't believe we need those parts considering its still running and it was only originally the brake locking on that was the issue.

We've all agreed a second opinion wouldn't hurt, getting another shop to come out (not telling them what other guy said) and see what they say is the problem... as other guy is quoting us near £1,000! (1,224USD I think...according to google!) just for a few parts!

Anyway with that agreed on we all set off to the lake and the scooter ran fine..its a 2 hour round trip...then LS wanted to help him open his presents!

We're just waiting for this short rain shower to blow over then can play in garden with Mr Woof again. He's got a small doggy birthday cake for later..I'm doing burger and spicy wedges for us...as everyone likes them.

This is progress for us as although Kit still initially lost her temper she went back in so I could calm down quicker on the outside and she also calmed down quicker and came out with a thought-through solution to see what the rest of us thought...I know Kit (as our protector) tends to err on the paranoid side and auto think the other person is 'taking advantage' first... but I was kind of annoyed too and got the impression he was expecting an angry response and knew he hadn't properly explained himself in the text when he said he was coming yesterday!

Kate always likes to see the best in people but agrees the price does seem high and maybe looking up the price of the parts online and/or asking someone else to see what they think is wrong with it first wouldn't hurt, especially with higher heating bills coming our way this winter too, she has agreed its 'reasonable' to see if we can find a cheaper solution but that we should answer the text 'diplomatically'

so we're trying to think what to say ...anyway sun's come out again here now and LS and Mr Woof and eager to get back outside to play and enjoy the rest of Mr Woof's birthday!

Jay

We all enjoyed Mr Woof's birthday, some came out just to give him a quick cuddle or came into the background to feel the joy of others playing or having cuddles with him. (the changelings can feel feelings and events through other people as if they'd done it themselves without fronting and then pass that on to other changelings on the inside).

I'm feeling a bit tired this morning but slept well and feel like I received 'a download' overnight. This usually happens when something an host has learned has been absorbed throughout the whole system so everyone understands that information. This often happens after a group event like everyone coming together to experience a birthday, special outing or xmas day together. We just don't get so many of them these days.

In this case I think its because finally everyone understands what it means to be a 'plural system' (it seems most prefer this term over the word 'multiple')

The 'not past versions of me' alters ..ie fictives/changelings/spirits have also decided they prefer the term 'Tulpa' over 'alter' and that the word 'alter' should only apply to the 'versions of human self'...(ie Bobby, Little Susie, Teen S, Sioux, Kit, and when referring to ex-hosts Thea & Maddie).

'I' (current adult me) have a much stronger feeling a decision has been made now on exactly how far they are willing to go with any integration process. Some smaller parts that previously made up 'Yuna' with Teen S have integrated with me..I now carry more memories of that part of life as mine. I have useful functional memory parts from Thea and Maddie too (ie knowledge of sign language so we can access an interpreter when needed for hospital appointments but retaining the ability to speak 'as me'..(Thea was non-verbal) Maddie's 'better ability' at lip-reading so face to face communication where there is no interpreter option is less exhausting and making more sense of social cues from others.

It feels like there is a whole new level of understanding throughout.

Teen S has come out of 'stasis' (she wanted to give Mr Woof a hug and a present for his birthday) but has chosen to remain in the inner world, she wishes to remain in the 80's world she knew, which can only happen 'inside'. Her house on the Sanctuary Farm is an exact replica of our family home at her favourite time/age. Changelings play the role of those she feels she needs in the house. I feel her happiness that she has reached this decision and made her choice.

I (Jay) have been voted as the new 'external host'.. Everyone voted and decided I would be the best person for the job as I had previously hosted as both original and under the new legal name' in the past and because had spent in-between times 'in stasis' my attachment to the inner world is not as intense as it is for the others who knew of each other all along and spent most of their lives 'inside' with each other.

Whilst I 'enjoy visiting'' the inner world,...others 'can't exist without it' (literally ..for some ie the changelings) and our little's and teens are intensely attached to them and the inner world.

So its been decided myself and Kate will make up 'the external host' and stay up front...others will 'visit' and even blend temporarily to do an activity together so I don't feel lonely, or isolated/cut off from them but won't completely switch out with me. I now have 'executive control' at all times!

Although Kate and SG will be spending most time with me up front, we have decided not to permanently integrate so they have freedom to go spend sometime back inside if they want to when I am needing to rest. They insist they are happy out here with me but I think it important they have the choice...if I am going to be resting/sleeping anyway there is no harm in them going to visit the others and returning later to help me, when I have the energy to get up and do something.

Time to go sort out that message to the scooter guy now the shop will be open!

Jay

Answering another post today we realised the thing DID has impacted most in our life is relationships and we hadn't thought about it before.. Being Autistic too you would think that would be the thing that most impacted relationships but we look back and think of others with autism we knew ones more severe than us and they still had a maybe a very small circle of people who loved them and understand them.

We have often felt no-one one truly knew us or understood us because our very core had spent years being re-trained to 'act normal' to fit in, to try to reduce bullying so we've always had the feeling of 'leading a double life' ..between the 'outer shell' that outsiders see and think is us and the desires of the 'insiders' who hated external demands and resented the alters that took over to 'meet life demands'

I feel like 'I' have been created to be 'somewhere inbetween', a compromise now society is expecting less of us - partly because of the covid situation and partly because of our other more 'acceptable' visible conditions that your average person can understand would make you tired or leave you housebound. ..eg arthritis and the long term effects of a stroke.

Previously some resented the external host and them getting to be the one at the front and having the life and would sabotage things deliberately via passive influence (past hosts had no awareness of 'others' or DID so would have assumed all thoughts were their own desires..even seemingly conflicting ones. (as everyone has these kinds of thoughts sometimes).

Since the development of 'Yuna & Juno' and more spiritual beliefs, others have also accepted the presence of walk-in spirits who can help by blending with us when we have to attend appointments.
I think having the pandemic giving us time where no-one saw us (other than sibling) has given us space to be 'a new me' publicly, but this time everyone in our system has been involved in who the 'official adult persona' should be.

so no ONE has to always be the one to pretend to be someone they feel they aren't... the' official shell' as its referred to now by insiders is created by the (temporary) blending of 3.

This is more for face to face appointments such as hospital appointments where you tend to be addressed by the full legal name and they want to make sure they are treating the correct body with the right treatment so 'our external shell' has to match what they have on record. and situations you may behave in a more 'professional' manner opposed to your 'relaxed at home self'

Where others have joined forums and then returned back inside and external people are asking after them (on the forum) I (jay) answer as the person they are expecting..This is something some others found difficult, the less sociable ones with no actual desire to carry on the interactions with someone they saw as 'the last host's friend/penpal etc.

Now several past social parts have integrated with me I am finding this easier..Kit particularly struggled with this issue with 'Thea/Maddie's friend' which has resulted in that friendship completely being severed. It's a shame as other than Jodie (our other closest friend from our teens that died) it was one of the longest friendships we had managed as Bobby had sabotaged most attempts Thea made of intimate relationships (that may have led to more intense physical intimacy...marriage and kids etc) so they didn't have to sleep with someone for the rest of their life and to ensure we always got some alone time so they could get 'time out'

Jay

I was exhausted after yesterday..Kate and SG ended up blended with me most of the day.. After the hearing test we had lunch together then the others were planning on returning inside to let littles come out to play as all appointments were over for the week (we thought)

Then there was a guy from housing at the door, told them we hadn't been informed otherwise we would have said we had another appointment for same day but he insisted it was a random check that was done after gas servicing had been done...certain amount of houses are selected to be checked on quality of work done.

Kate took over and told he'd have to move stuff himself then as no-one had told us they were coming we hadn't asked family to come over the night before to move anything that maybe in the way...so we ended up all blended for longer than anticipated and with not much sleep for most of previous week we were exhausted by the time he left!

Kit was much calmer she didn't try to come out or get past SG (guarding the backdoor so to speak) so Kate and I were able to stay calm throughout but she did want us to put the white board in front of it after he left incase they had put a surveillance camera in(no idea why the would..quite sure its not even legally allowed!) then thought maybe they'd been to remove the one put in last time as it was only beginning of sept when gas servicing was done. Kate managed to reassure her that's she was being ridiculous and perhaps really needed a break herself cos we have things covered here.

Anyway this morning taking Mr Woof out I found I automatically knew everything about driving the scooter over the various terrains we have out here (Kit had been the most experienced 'off-road' driver).. Just LS is in the background today and wanted to sit on our favourite bench and play ball with Mr Woof for a while as no-one was about. She wants to put a message on Littles board and play on her switch game for a bit, so that's what we're doing today

Jay