A New Start (the way forwards)

You're welcome.

It is frustrating to deal with the outside world. Father still hasn't adapted to our autism, and everyone makes excuses for it, but the reality is that he could have adapted a long time ago. So many others just made life difficult because of the autism.

We think that Beth was the one who appeared the least autistic so she was the 'outer face' a lot of the time. Bri was the most autistic but most adept at school work. Vi was the most creative. Vi created the inner world as a sanctuary.

I do hope that you can figure something out to help with the arthritis.

Be well,
Pippa

You may want to look into avocado-soybean unsaponifiables:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7023362/

Blood thinning isn't listed as a side effect anywhere I could see. While I stopped taking turmeric and fish oil and l-arginine before my surgery earlier this year, because those do have blood-thinning activity, I didn't stop the avocado-soybean formulation.

However, while it's an OTC supplement here in the States, it's possible that it's only available by prescription where you are. It's been used in France for 15-20 years as a prescription medication for arthritis with good results, and we haven't had noticeable progression of arthritis in the 3-4 years we've been taking it. It is expensive as a supplement, so maybe you can get it as a prescription that's paid for by insurance.

TheGangsAllHere wrote:You may want to look into avocado-soybean unsaponifiables:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7023362/

Blood thinning isn't listed as a side effect anywhere I could see. While I stopped taking turmeric and fish oil and l-arginine before my surgery earlier this year, because those do have blood-thinning activity, I didn't stop the avocado-soybean formulation.

However, while it's an OTC supplement here in the States, it's possible that it's only available by prescription where you are. It's been used in France for 15-20 years as a prescription medication for arthritis with good results, and we haven't had noticeable progression of arthritis in the 3-4 years we've been taking it. It is expensive as a supplement, so maybe you can get it as a prescription that's paid for by insurance.

I'll get Kit to look into that later thanks. Painter man is due again today so her and B have gone deep inside so we're not flooded with anxiety all day! - Jay

well the ceiling is finally finished!

Bit tired today, have pain in the left side, probably from having to move things from room to room and the stress. It is a bit weaker that side, though not paralysed ..we can use arm and leg on that side but we notice if we overdo things or having bad fatigue that side seems to get more pain and stiffness quicker.

We have been working on it and its stronger than it was. It has been a stressful couple of weeks though. Taken some painkillers and got the hot water body bottle thing on our side so hoping its eased up enough to get Mr Woof out for a short run to the nearest field later.

So glad we've got the scooter, we'd never managed his walks without it and even though we don't leave the village I think just the act of 'getting out' and feeling we're out in nature (there's a lake with lots of wildlife nearby) does help with mental health aspects such as mood. Even if we have to drag ourselves out reluctantly usually by the time we've got round and come back we're feeling much better.

We do notice a difference if we have to skip a day or two due to heavy rain, gales or heavy snow...Though snow's not too bad the first day cos Mr Woof loves it and we just sit in the doorway chucking snowballs with his ball thrower as he leaps about like a mad puppy in it! ... after the garden and roads have turned to mush though, the novelty is kinda wearing off and we're longing to be able to get out for a walk again!

Snow's a bit of nightmare as a wheelchair user but ironically we love it in video games and often get the games with snow in them out for Dec/January etc. Kit likes watching programs about Canada, Arctic and Antarctic not sure why, we'd never survive in those temperatures! ...maybe just a bit of escapism? ....Of course the beauty of the Inner world (and video games) is you can have the lovely snowy scenery and polar bears without the subzero temperatures or getting eaten!!

Jay

Morning!....Jay here today.

Well after my last post I'd gone to get ready to take out Mr Woof and found we had blood in our eye and panicked.

Anyway Kit and 'MG' came forwards and checked it out...Kit took a photo of it every day as soon as the natural light was good in the bathroom so they could see if it was getting better or worse. It has improved a little each day and Kit showed me the photo's so I can see for myself.

I'm a bit nervous about fronting alone as the body's health is not as stable as it used to be, but Kit is staying out to co-host with me, we did some exercise this morning so I have something else to focus on!

Also have to write the neighbours xmas cards and deliver them today! ..when it warms up a bit more..it was -2 here first thing...the scooter batteries don't run so well below zero! ...Kit says we usually wait until its the warmest its going to get for that day (usually around lunchtime) in winter to take Mr Woof for his walkies when its so cold.

We're trying to get back into our therapy program which has got sidelined with all the other stuff cropping up lately.

Kit is annoyed with the medical staff, the surgery had told us we could have a different vaccine, the nurse turned up unannounced yesterday while Kit was fronting she had only brought Pfizer and said there was no other choice. They didn't have Moderna and AZ was not being used as a booster.

So I don't think we're going to be able to get another booster, we'll just have to pray we don't get covid as Kit was unwilling to risk a severe anaphylactic reaction yesterday afternoon when put on the spot ...with the ambulance response times being so bad and having no epipen (the nurse wasn't carrying one either!)...Kit wasn't willing to traumatise us all again..( if we did survive the initial reaction) by spending hours in the back of an ambulance then a hospital corridor and not being able to get home again for xmas cos there's no social care! ...we got lucky last time as it seems they misunderstood and thought we still lived at the autism unit and family were returning us there after we had visited the family dog!....I doubt they'll make the same mistake twice ..we'd be stuck in there and xmas ruined! ..so NO vaccine booster ...we'll just have to work harder to boost our fitness and immune system so we survive covid if we get it!

Jay

We now believe the evolution of Thea came from Bobby's Fear of speaking but wishing to have a life where they could still be independant and them communicating by writing would be accepted. (Very few people knew of autism in girls or knew selective mutism existed back then so there was NO support)

I (Jay) existed first (before Thea) though I did not have my own name then I just responded to the body's name. I was somewhere between the previously 'hearing social front 'Teen S' and the deaf self the body had become due to medication error.....more 'hearing impaired' than 'Deaf' in a cultural sense (ie in the the same way that people born deaf brought up with sign as their first language see it as 'their culture)...that was a learned persona from Bobby taking on the persona/identity of other deaf students at the college.

Though their favourite friend was Jodie I don't know if its because she had mild learning disability too that Bobby felt able to speak in her presence knowing she wouldn't pick upon the fact we were different with different people and wouldn't make fun of our speech.

We were encouraged to speak too but it was when we socialised with other deaf born students at the deaf social club where speech wasn't allowed.. the rule was even hearing people visiting (family, hearing kids of deaf parents, social workers etc 'turned off their voice' and signed)..we think this is where Thea evolved and then really came into her own when we lived completely away from home at university...because the lecturer met us at the social event for 1st year deaf students...no parent with us telling us to speak...she assumed we were deaf born, we never spoke in class in 3 years.... Thea was in fact 'Bobby' under their new name.

The hearing aids blocked out all environmental noise to a volume (they were always turned off unless we wanted to listen to music through the loop connected to a walkman) they could cope with 'being present' and signing, and everyone communicating with us via an interpreter controlled the rate everyone else communicated with us. ..It reduced the amount of stimuli to be processed and bought us 'processing time' to understand what was being asked of us.

The social mask 'Thea' dissolved because we found out we had autism by meeting other high functioning autistic adults and there became a realisation that our not speaking in public was not about 'being deaf' it was due to the autism'.

SIgn language had helped us immensely though ....through learning the language and why certain words were signed a particular way we learned words had meaning and constructed our own sentences rather than just echoing back pre-learned ones that we had learned in certain situations.

Thea got dropped in some situations but Bobby still didn't have confidence to speak as themself as we had selective mutism too and did not know this...I would come out as this 'half way between 'Deaf Thea' and past hearing host...a 'partially-hearing self' more based on Jodie...acknowledging the hearing difficulties but not 'culturally deaf' in the same sense as Thea. ..we think because Bobby had finally been able to see how restricted those who relied totally on sign were going to be when entering the working world where they couldn't have 'an interpreter'...- back then they were still very expensive ...not so many of them so only tended to be available for either education or medical appointments in areas that had a lot of 'deaf students' due to local courses or deaf schools.

Thea's persona completely disappeared when we were rejected by the deaf community, originally only coming forth when the 'deaf friend from uni' visited us..when she made Maddie feel rejected too... 'there was no further need for Thea. ...she had after all simply being Bobby's social mask to get the degree needed to prove they weren't re*****d...a name B had been called all their life if they ever dare to appear 'as themself' in public.

Maddie has also dissolved for a similar reason she was essentially just a FB persona and when the relationship with said friend broke down there was no need to 'be 'Maddie' if we didn't go on FB anymore and closed the account.

The remaining (human) alters though all seem to be more tightly woven to the 'core' and all seem to have always been 'more than just social masks'. To us the 'core selves' were the real selves that carried our real likes and dislikes etc and the 'social mask 'persona's were just a fake front designed to fit in with what the NT world 'considered normal'... ie Maddies hobbies were what were normal people of her age liked ..if someone told us reading and housework is what we should be doing then those were Maddie's hobbies and what she did. ...whilst insiders such as Bobby craved opportunity to come out and do the things they really wanted to do without anyone's judgement like playing video games in secret!

We also believe the hormonal shifts of peri-menopause also re-triggered the true autistic self re-merging and this time not caring so much with fitting in with NT anymore.. we'd done college and work there was no longer any expectations on us of 'adult stuff' not wanted, (ie marriage and kids) due to the physical disability too... the isolation from the pandemic also gave the insiders much more opportunity to come out and stay out for longer periods, sneak out unnoticed under masks so we didn't get covid.

The more we read about this 'phase of life' the more confident the insiders became about their ability to change 'the life' to something they wanted for the future instead....freedom to be ourselves and not just what the NT world thinks we should be!

Written by several co-writing.

WOW reading that back I realise that we (as a system) have made great leaps in understanding who 'we' are!

There is still a divide though as whilst the 'social mask alters' (Team Jay) are willing to work as one to get on with life, Kit & Bobby aren't willing for a permanent fusing of both. They highly value the inner world, the symbiotic relationship with the changelings and their abilities (which we don't all share unless blended with them or a changeling) to live in a fantasy world.

Kit has made progress by working with the others more and dealing with real world issues more.

Bobby has made progress by understanding they now don't have to be 10 all the time just be able to enjoy video games after showing them video's from YT of all the adults out there playing....the 90 year old japanese lady in particular. They front more with Kit to do the physio exercise sessions as an adult though they still like to play Zelda as a child.

We've got them Switch Sports for xmas as the wii sports disc got scratched and won't play and we had enough credit left on the e-shop from the birthday money put on in summer. Also found a cheap 'accessories pack' on ebay with tennis rackets and swords....we think Bobby in particular will enjoy the sword fighting game...but will hopefully enjoy it as an adult physio session with KIt playing the Tennis too.

Bobby will also join Kit in taking the dog out at the weekend and Kit tends to go out really early when no-one else is about, They both tend to prefer to have have weekends to themselves to 'come out' but be largely able to ignore the rest of the outside world just playing games and watching sci-fi re-runs!

Neither has any interest in pursuing a confirmed diagnosis or going to talk to any kind of therapist, though they understand the need for physical therapy cos it keeps away the need to have strangers in the house to help us dress etc (therefore increasing physical contact which neither enjoy). It seems they view any type of physical contact as 'abuse' regardless of intent.

It is 'our job' (ie the 'social mask hosts') to deal with that kind of stuff though we are instructed to avoid it wherever possible. They accept Juno's need for a hug 'from her son' and hug our dog freely but that's about it.

Jay

Well I found out what the littles were excited about!...'Phoenix is ready' .. Child Bobby'& Little Susie's original child changeling/protector who was damaged during the stroke event , was re-birthed via their inner world customs and has now reached the stage they are able to take on adult forms (of either humans or animals) and blend with human hosts.

Kit has been charting their recovery and discovered they have retained no trauma memories from the past life and seems to view the life history from an entirely different perspective..and also allow those they blend with to temporarily do the same. ...I'm not sure what this means for us going forwards but Kit also seems excited by this discovery.

For now I'm being told to continue as planned for the rest of this year. Kit has to test how much being blended with Phoenix may change our external behaviour (ie as outside people see us behaving in public) before the system even considers allowing P. to be a co-host out front.

Jay

Some Very Big Decisions have been made (internally) about how we wish to proceed with 2023!

I may have mentioned that Little Susie has been wanting to build 'mummy's house by the sea' in Animal Crossing and put the whole family on the island, we have been working on this with her...me in weekday evenings and Kit at the weekend. ..we're nearly there... we have completion planned for xmas day...in LS's mind that will make it the best xmas day for her ever.

Yuna and Juno moved onto Stardew Valley after seeing some of the NPC's when Kit & Bobby were playing (who have since lost interest in it). Yuna felt she wanted to give Juno a chance to show her back story and work through it in a kind of therapy way. So they choose the NPC that most closely represented one of them and had the letters in their name from the letters in one of their real names then created their playable character as 'the other twin'

Their aim being to 'marry' in game so they can live in the same house (although they have upgraded it so they have their own rooms for when they move in together)... in their minds the in-game wedding is their 'Ceremony of Fusion' to celebrate their twin souls finding each other even though they were in separate realities. The moment they are waiting for is when their characters can hug and share their lives as twins in the outside world too (albeit within a real world video game).. this will mark the point at which they fuse as one. For now they do not wish to fuse' with anyone else in the system except each other. (Technically they are 3 as 'Yuna' is 'Teen S' + 'Sioux' blended)

Bobby & Phoenix always wanted the original Tri-force to be the ones to fuse which includes LS, ...as they have to wait for her to achieve her in game goals and have been waiting for Phoenix's recovery they have decided to have one last xmas as separate alters so Bobby gets to play on Sonic (and BOTW) as themself (child Bobby) one last time. They plan to undertake their 'Ceremony of Fusion' on New Year's Eve.

This leaves myself (Jay) and Kit still separate (so we can front in shifts or in specific situations, with SG (who is mine and Kit's changelings blended as one - They exist in a symbiotic way like the 'Tokra' in Stargate SG1'...when I am fronting mine has dominance' to support me, when Kit is fronting hers has dominance to support her)..I believe Phoenix works in the same way for Bobby & Susie..(or did in childhood originally).

So by the beginning of 2023 we should be starting the year as just 3 up front and the others having achieved fusion or some other level of integration (within their chosen groups). Whether we will ever all fuse as one in the future is unknown at this stage but everyone has agreed to try this for one year to see if we can improve our life and mental & physical health.

Jay

The System

The system seems to be constantly shuffling round. we were going to have 3 subgroups ...' social alters', Kit & Bobby (who had wanted to remain separate) and the changelings have their own subgroup..this seems to have changed yet again firstly because of Yuna and Juno who only wanted to be fused with each other and then Bobby deciding they wanted fusion of 'the original Tri-force' (themself, LS & Phoenix - the very first in the system). They are still going ahead as planned.


Relationships

With each other - Kit and I seem to get on really well. She says she doesn't find it as stressful to blend with me, other than her own changeling and Bobby she rarely enjoyed having to co-host and preferred to do a separate shift to 'do her bit', usually focusing on something practical such as physio or something that needed doing that the other co-host couldn't do. (or didn't do as well).

Outside world - our relationship with our brother has improved as we've got older, the pandemic has helped and his last partner who seemed to act as a go-between helping us understand each other. It's a shame they split up I know Yuna liked her. Haven't really got chance to know this new one, seeing her only once very briefly so can't really compare as we don't yet have any kind of relationship with her.

We don't seem to have any contact with any 'past friends', the one I had considered my past friend when I was last out and got to enjoy the most time with (Jodie) passed away. I never met Thea's or Maddie's friends as I was never triggered out when around them in particular.

Recovery

Speech - We said a whole sentence out loud in public without it being a real struggle to get each and every word out this morning to a complete stranger! Kit and I were out with Mr Woof and a lady wanted to randomly give him dog biscuits, he does have food allergies so I found myself saying ..'Sorry, he has food allergies.... then 'but thank you' ... hoping it didn't offend her too much. She still smiled at us and nodded and didn't look upset or anything.

Tinnitus - we've had a mild improvement. if the neck remains pain free and not too stiff we are not getting additional T from 'the back of the head/left ear. ..some vitamin uptake have improved that also (we were a bit low on magnesium & B12). The other side that's a bit more deaf....we can still only get relief from when we have the hearing aid with the Tinnitus masking built in or when we are out on the scooter (the noises from it must be the same pitch as the T or something?)


Movement - Physically our balance is improving too, we still need to focus on walking but can manage around house with one crutch if floors aren't slippy. The rollator with seat is easier though for pushing things from room to room.

We'd like to build up to all terrain rollator outside as our dog gets older and doesn't need as long a walks as he ages so we could sometimes just walk to the nearby grass for a couple of shorter walks and just do longer treks every couple of days (we do have a dog bike trailer for when it get too far for him to run alongside all the way round and back on longer treks)..so he can still get a longer trip out to somewhere different for mental health/stimulation etc

We still need to be sat to do jobs as we can't let go of walking aid and keep our balance to do something like wash up or stir something in a pan..we have to sit down first so we have our balance then can use arms! Have to sit down before people can talk to us as can't keep balance and watch their lips and work out what they're saying too! ..which sounds weird! - which is why we think a more stable outdoor rollator with a seat would be better than trying to use crutches outside of home. (crutch is fine for just from sofa to loo and back or at bro's house where less space between furniture for a rollator or wheelchair and we're just 'getting in' then sitting down) but we feel safer with the rollator and then don't need the wheelchair too just incase we need to sit!


Me, Kit & SG are happy to continue to be 'the fronting team' We're hoping for continued improvement over the next year in all area's, it will be our new Year's Resolution!

Jay