A New Start (the way forwards)

We have experienced a set back and unsure how to proceed at the minute.

Phoenix caused much disruption over the weekend, lying to and upsetting several within the system.

She is to face the Changeling 'council of elders' who will see why she behaved as she did and what her true intentions were.

It is not easy to rebuild your life when you have no communication with others and no idea if any life you do make whilst waiting will be lost if for example you do disappear back inside and someone else comes out and completely reorganises life.

I feel like I'm just 'babysitting' the body to keep it alive for the RL dog never knowing whether the next day will be my last 'up front', who will come out and take over and what state the life or the body would be in if I ever got back to the front again.

I was only trying to find a way to help re-connect with everyone but now left feeling depressed after Phoenix's tirade and accusations and wishing I'd never even bothered to try to get back in touch with the inside!

Maybe it would have been better if I had not re-discovered that I may have been part of system of alters and continued to live post-stroke as one individual who just thought she could talk to her mother's spirit!

Yuna

Getting better involves, facing challenges and overcoming them.

Alters never have any real malicious intent, they merely have maladapted protective behaviors. Granted, the protection logic behind "abusing the other alters so that the outside abusers do not need to do it themselves i.e. protecting the system from the outside abusers" is kinda forked, to say the least. But it is a protective logic.

It's best to start from the deep, protection intention at the root of the behavior, and kindly work towards better adapted protection behaviors.

Some alters want to protect themselves from looking vulnerable and victimizable. Some alters want to hide the real traumas because they feel the real traumas are too big to handle. And so on.

Do not hesitate to have a look at "Healing the fragmented selves of trauma survivors" from the ressources thread, there are chapters aimed specifically at overcoming such challenges.

Thank you...we'll take a look at that. I think Kit had read one of the books but I can't remember what it was.

This year has been a real struggle and now nearly approaching a year since, we can look back with hindsight (through the guardians eyes - who oversee's everything, - they took us on a 'visual journey last night via our dreams) and see that actually our system is highly efficient! ..even going back as far as the onset of the pandemic I was shown that Kit's organisation meant she and Bobby were comfortably chilled out playing Zelda whilst the rest of the country were in a panic emptying the supermarket shelves, because she had taken time to make sure we had everything we would need in the event of any emergency.

They were chosen for that part because they'd be the least affected by isolation and would enjoy the time to just chill out playing games all day. In the same way I was chosen because I held the information that would satisfy medical staff we'd be able to cope at home. It was deemed necessary that I didn't remember everything about the others from the beginning, until they could be sure I had the understanding to know they were 'a secret' from real world others. (but still they kind of steered us over here to get some kind of support and assistance from people who knew about 'living with secret others')

Although I couldn't communicate with Kit her stores again came in useful as I didn't have to worry about food for me and the dog immediately and household products as there was plenty in. We have replaced everything and everyone's favourites that we've used so when they do manage to front they don't have to worry about that either. We've been batch cooking their favourite curries and chillies in the slow cooker too and freezing them, so even without awareness...sub consciously we've been preparing for a switch over to happen when the body and system was ready even though I never realised it!


It has been decided rather than Kit trying to come out and stay out in one big block a few weeks from now, that Bobby comes forwards for shorter periods more frequently with Kit 'within her' (in the background advising) that way she can build strength without needing the energy for full control of the body.

Juno and I will stay present to start with but in the background...in case it suddenly gets too much and they can build up the time in their own time. We will be starting that as soon as this week's appointments are out of the way and over the weekend.

Eventually we hope Juno and I will be able to maybe switch out with Jody/Phoenix/Susie so they can come back on the board as 'Team Kit' and we can go take a well earned break for like a day or a whole weekend would nice!

so things are slowly coming back together...we've just got to hang in there a bit longer before me and Juno can get 'our holiday'!

Yuna

I'm so happy for you all! You are making tremendous progress! You are all awesome!

Well.... made it inside and back again!!! WOW!! it's an amazing place!! I totally get now why they were so panicked at the thought of losing all that!

Had a lovely break ..really needed that! I did receive an 'update' but after Bobby and Kit being out and saying they found even quite simple things within a very quiet week overwhelming they have removed some of their thoughts and anxieties so I don't get overwhelmed by the same things.

It was felt we shouldn't all share the same likes and dislikes as it too confusing and Bobby spent some of the time not sure who they were and unsure as to whether they should be enjoying something or whether the 'host' (as the outside world see's us) would be saying or doing a specific thing.

I don't know if its because everyone is used to being such an individual alter that tended to specialise in only one thing so we always knew who we were instantly most of the time but Bobby and Kit found trying to work in a kind of 'semi-fused' manner a bit disorientating sometimes. Still it was not a failure as it is still the longest time they have ever spent out front continuously and 'Bobby' had complete control of the body for the first time since childhood, so a huge achievement there for Bobby!

Kit is now also able to get up front fully and I find I can do something's easier so the sharing of physical knowledge of what the body can do has worked and being extremely useful.

It has been decided that as myself and Juno have the strongest sense of who we are as an outside host both individually (home alone) and blended (in public) to represent 'the host' as the outside world see's [real name] that we should continue to be the permanent host of the system/body.

The other's still prefer to be able to slip out to do their favourite things then disappear back inside, but Juno and I are grateful for the week's holiday, especially as we don't have the resources to go on a 'real world' holiday in current circumstances.

It was also amazing for us to have a separate body each inside and be able to give each other a proper hug but there's also something quite special and unique in sharing the co-piloting of the body as conjoined twins would operate one shared body.


We will be taking more regular 'overnight breaks' back inside as Kit/Bobby prefer the evenings and early mornings but we are now the 'daily life host' ...'Yuna' now being the name for us both combined as an 'I' and equalling the RL nickname that the outside world refers to us by.

so we have at last found 'the way forwards'! Yayyy!!!!!

'Yuna'

-- Sat Jun 11, 2022 7:04 am --

ArbreMonde wrote:I'm so happy for you all! You are making tremendous progress! You are all awesome!

Thank you! Your idea with the virtual aids has worked too!...we now have virtual AFO's for others to 'put on' before they come out and also now have a new pair of actual AFO's in the hope they will help give us confidence to walk further than a few steps between furniture/rooms without having to sit down.

We may always need some kind of walking aid for outside but even been able to walk that little bit further and more confidently with crutches or an outdoor walker would be great!

Having multiple conditions is like being caught up in a whirlwind (Tornado) sometimes!...Just as you think you've found the right path, something else hits you and knocks you off your feet!

Then you have to try and find your way back to rejoin the path and carry on from where you last got to! ..this time we were hit by chronic fatigue after having decided a way forwards and exercise plan and who is is doing what etc we barely have the energy to dress to get the dog out!

Initially we'd planned to just wait until later in the day but the world has other idea's... cos we're having an heatwave,it's going to be over 20 degree's before lunchtime so it will be far too hot for us and the pavements will be too hot for the dogs paws.

If we're gonna make even a short walk we need to be dressed in time for the school/work traffic rush ending (an hour from now) and be back before 10am before the temps start climbing. The dog doesn't seem that bothered after going in garden for a wee, he's gone back to bed!

He is a breed with a thick double coat so overheats easily. Trying to remember where we put his cool mat and the fan away at the end of last summer as it's the first time this year it's gonna get so hot here.


On the system front - Kit & Bobby are working together trying to quietly work out how we can boost energy to the front whilst still allowing the insiders to carry out their live's. They have come up with a virtual energy deflector using 'changeling technology' as a shield around the holodeck that also captures the energy the insiders use in there and deflects it back to the front so Juno and I also have energy to do stuff out here..and still keeping communication open! In the meantime I've ordered blood tests to check our thyroxine levels!

Anyway I'm gonna have to go see if doggy fancies a walk or just wants to hang out in the garden until it gets too hot! Will try and find some energy to fill his paddling pool for him so he can go lie in it to stay cool!

It sounds that despite the fatigue, you manage to organize to get at least the bare minimum done and it's awesome!

Taking time to rest during the hottest hours is also a smart move. I'll do that too. Turn off the computer when it gets too hot and just read a book.

ArbreMonde wrote:It sounds that despite the fatigue, you manage to organize to get at least the bare minimum done and it's awesome!

Taking time to rest during the hottest hours is also a smart move. I'll do that too. Turn off the computer when it gets too hot and just read a book.

Hi!..we didn't manage to get the dog out yesterday but we did early this morning. I think being able to recognise that an episode maybe imminent and everyone agreeing to completely down tools and rest at set times has helped. There is much better communication and ermmm ..what's the word?...working togetherness?? ...than there was before.

Hopefully we have prevented a major crash coming on, though we have had it when we've been totally bedbound and it has taken months to recover properly from in the past.

We seem to have got better at 'pacing ourself' with rests in between each short activity and making activities shorter and in several stages eg just throwing pre-chopped veg/beans etc and a pre-made sauces/seasoning mixes in the slow cooker for it to cook itself rather than having to spend an hour sat in one go preparing everything and cooking it on a stove top.

later when we venture in to kitchen for a drink or something we may put the salad on a plate and put it back in the fridge ready, put the taco's in the halogen oven ready to just switch on when the chilli is ready (just to crisp them for a couple of mins).

We break down laundry by sorting it the night before, then only have to press the button to switch it on as we head out with the dog, by the time we get back its finished and ready to hang out and leave to dry for the day.

Things like stuffing the dog's kongs (interactive food dispensers) the night before and leaving them in the fridge so just have to hand it to him to take outside when we get back, then can go lie down straight away if needed. If we can manage to get organised we don't do bad, but if we leave it until we're too tired to think it ends up being a struggle to find the energy to get through the day!

Ideally a really good day would be having time to enjoy some different hobbies too (haven't managed any art activities for months) but just getting through the bare minimum with physio, speech therapy, medical appointments and our dog's daily care has used up all daily energy reserves since the stroke.

I'm surprised we haven't had a complete crash by now to be honest!! I can only think its all credit due to the fitness levels Kit had managed to get us to before it happened!

Congratulation for all this good planning and anticipation! This is amazing teamwork! Yay!

Finally feel like I've got the energy to tackle the journal..wanted to write about the second physio appointment.

After the NHS had written us off saying they would not provide physio on NHS I sent a letter of complaint asking for a second opinion. I was prepared to pay a private consultation and sent them a copy of a letter I had drafted to a private service asking for an assessment and whether based on those actual physical results (not on the fact that I have autism and can't speak in public sometimes) what they thought.

As a result they provided me with the other appointment for a second opinion free of charge (probably incase I could sue them if a private service disagreed and I went to the press).

I took the splints I'd bought and a chart showing what I could do with willingness to demonstrate it as long as they provided me with a private room with only one other person in (not in the gym in front of everyone, but I gave permission to them to record it as long as I also got a copy!) and be prepared to be patient because I had everything typed on my iPad and was perfectly capable of explaining if people had the patience to wait and listen! (not try to second guess what they thought I was trying to say!).


So that's why I agreed to go back on a day I'd have rather been inside in a nice cool room laying down. I'd said I was perfectly happy to do the exercises at home as the travelling alone was exhausting for me on a regular basis but it was the fact they had assumed I was 'intellectually disabled' so wasn't going to 'waste money on my recovery'. I may have also mentioned the press would probably would a 'field day' with this,if they were to find out!

So I got my appointment, the young girl was nice and I'm sure very well trained in physio but obviously had never met anyone like me before. She seemed obviously amazed at the fact that I live independently and hadn't come from a care home or with carers for that matter!


I asked that if I was just profoundly deaf and didn't speak and had brought a BSL interpreter instead to communicate with her (as someone who spoke another spoken language other than english may have done) would she have assumed I was incapable of doing anything else, purely on the basis I didn't speak?


'oh no, of course not' she replied, then the 'penny seemed to drop' for her as she realised the implications of what she had just admitted to! ..After that she stopped talking to me like I was about 5! ..then proceeded to show me some actual useful tips and information.

She did apologise before I left and it was then I was told that it was on record that I was autistic and that it was felt it would be a waste of resources paying for extensive rehabilitation because they thought lived in a care home! She apparently did not realise I had spent nearly a year (soon) living alone at home waiting for them 'to get round to me' with some specialised help!

I typed back that I had only waited for so long because I understood the pandemic situation and I knew the NHS was struggling with backlog and emergency care and told her about my neighbour been unable to receive the clot busting drug because the ambulance took too long to get to them (they were none free they all tied up parked outside A&E waiting to admit people!)..she agreed it was a terrible situation and said the current waiting time to be seen at A&E (emergency dept) was around 12 hours. and many ambulances were not making it to critical situations (stroke, heart attack, road traffic accidents) within the usual acceptable time frames. I told her the neighbours ambulance took 4 hours by which time it was too late to save them, I know I was extremely lucky mine happened before things got this bad especially given my location and distance from the city hospital!

On a brighter note....the back pain is slowly easing up ..I've bought a ultra-sound massaging thing to try and some bathroom scales off ebay that aren't too technical but do also show water weight,muscle and bone I think (without showing BMI) and regular weight for a 'quick weigh'.

At least then I can check if regular weight goes up I can see what 'water weight 'says and know its probably temporary due to inflammation or monthly cycle.

We're all determined to get back at least enough mobility to survive alone if we have to this winter as we can't rely on care services. Hearing stories about people's carers not turning up cos they can't afford the petrol to get to work and still have enough to feed their own families/pay energy bills! ..and I wouldn't have enough to pay mine either or get stuff I need if I had to use most of my income on carers wages.

Anyway time to do my daily walk around the garden with the rollator and hang some washing out while I'm out there! Mr Woof is waiting to emptying the washing machine for me!