Autistic women assemble!

[Nepmarthiturn]

...only if and when you're not feeling antisocial and want the entire world to +%$¥ off, or course. 😉😆

A few of us were talking on another thread and thought it would be nice to have a support/ chat thread on here to share interests/ challenges/ parenting issues or whatever we feel like. A little community of autistic women on here that we can dip in and out of but will be supportive and friendly and people who actually get it.

Might also be a nice counterbalance to all of the horrific posts about autism that we find here so regularly!!

P.S. Have deliberately posted this in chat rather than in the ND Mumsnetters topic because it will hopefully reach more people who would like to join in. I didn't even realise that section existed for a long time and often miss threads there as they don't show in active and expect I'm not alone in that. However, in posting this here, we will be relying on the people with obnoxious and ignorant views about autism who so regularly post on Mumsnet, to demonstrate to us their allegedly superior empathy (ha!) and please just leave this thread alone: it's not for you. Many thanks!!

Yes! I so understand!

Just heard that Monday's plasterer is brought forward to Saturday and Sunday. No idea how to prepare. Want to run and hide!

🤣🤣🤣

All of this. Silence is fine. The above is not silence.

See also open plan offices and public transport. They can get in the same bin as hospitals.

I have just been trying to sort something out with my bank. Used their secure messaging service to speak to them. After several messages backwards and forwards and me explaining the same thing several times they suggested I call them. Then what is the point of the messaging service?! I have given all the information, there is nothing new I can tell them on the phone. If I wanted to speak on the phone I would have called in the first place! Why can't they just go and sort it out and then message back with the answer? I feel like my head will explode today. Spent far too long on Teams today to be functional this evening.

Sorry you're feeling overwhelmed Nep - it's awful when it feels like everything is just piling up. It's like shovelling snow in a blizzard!

It absolutely is! The level of life admin to do with sorting out things with school, OT, SALT, complaint with CAMHS, various medical appts, trips to A&E 🫣🫣, trying to renew all our passports and various other things. Then a full time job, then just basic day to day stuff. Kids want to see friends and have clubs etc. Homework. Endless demands from school for inside out cereal boxes stuck together with masking tape and other random stuff.

I feel suffocated. I feel I'm always dropping the ball with something: either not spending enough quality time with the kids, or admin piling up or behind with work or house a mess. There just aren't enough hours in the day. I could really do with a few days to just potter outside and clear my mind but there is always somebody who wants something.

Sorry to moan, hope it's not driven everyone off again. 🤣 Just feeling a bit sorry for myself. Especially as my ME has been so bad recently I am in constant pajn just walking around the house despite the painkillers. I'm so sick of it. I want to be able to take my children on walks or go running like I used to. I feel like I'm 70 years old. But sadly not retired! And have to put on a brave face and be "happy mummy" and "competent employee" and "not constantly miserable friend" (as I still want to have friends who aren't utterly sick of me moaning 😆😆).

Anyway sorry for the whinge. The sun is out at least and that always makes things so much better.

How are other people doing today?

You don't need to say sorry for moaning.
Just because you're the OP it doesn't mean you have to remain jolly and cheerful for the rest of us.
And please don't think you've driven people off the thread!

I had two mini success stories today with some very tedious admin.

So I am not having a gin quite as early as yesterday.

Also feeling a bit burnt out after half term and my bit of DD's EHCNA is currently doing my head in. Half term holiday was lovely but not really relaxing.

Thank you @TheShellBeach , it's good to have a safe place to have a moan! Gin o'clock also sounds like it is well deserved. Such a feeling of achievement to be able to vigorously cross some things off the list.

@Jules912 absolutely! Lovely to have time with children but definitely not a holiday for adults, you end up more exhausted than at the start!

I've started planning our holiday food - and had forgotten how many lists this always entails.

Food to take with us

Food to have delivered once we get there

Food which needs to be taken in a cool bag

Odds and sods like washing powder

UGH I am now remembering how annoying the whole thing is. I am also remembering why I vowed to myself last year that I'd find a reason not to go on holiday this year. But I failed to find such a reason and booked it when DH suggested it.

It's too much effort.

I expect I'll enjoy it when we get there. Maybe.

This is why I think self-catering is not really a holiday; it just ends up being same thing in a different place, all the same tasks but actually more organisation and hassle because of new routines and needing to find new shops etc. I think a holiday is only restorative if it's a complete rest from the usual tasks and obligations of life so no need to cook, clean, no itinerary planned, some actual freedom to do what you happen to feel like and have a clear mind for once without the whirling "need to do this, then this, then this..." and trying to conform to a timetable etc. Obviously still some organisation to do to book it, pack, and actually travel there but when there at least there should be no obligations at all!

Also why ideally it needs to be at least 10 days, otherwise the amount of work to organise and pack and travel is not outweighed by the rest when there. It takes me around 4-5 days to feel comfortable in a new place, so if only a week then by then packing and travelling home is looming! 🤦🏻‍♀️ Two weeks+ is ideal and hotels all the way.

I also reeeeeally need to go somewhere with a tropical beach AND a kids' club.

Where are you going @TheShellBeach ?

Torridon.
A small Scottish village.

We already live in a small Scottish village so we're just moving locations.

We do enjoy touring around and seeing scenery.

I've had to organize our autistic son to come from London to look after our cats, as well as everything else.

And I cannot see DS managing the tickets and times for his journey so I've done that, too.

I actually managed to buy two bus tickets for him today, instead of one.

So I'm a fine one to talk about disorganization.

Aaargh so much organisation. 🫣

I hope they'll refund the duplicate?

It sounds very peaceful so should be worth it once you get there. 🤞

Yes, they agreed to refund me.
That was one of my admin successes today.

Nicely done!

My other admin success was in persuading Damart that that only sent me £69 worth of goods, not the £156 worth they claim they sent.
Idiots.
But I prevailed eventually.

The time and effort wasted in doing these things makes my brain fall out.

Solidarity @Nepmarthiturn - I have ME too and it has been an absolute arse this week. My whole body feels like a toothache, and I'm absolutely beyond exhausted...annoying because I've done everything right, but sometimes flares just happen for no good reason!

(I've name changed since I last posted, no idea if this will show under the previous name or not. Either way - hi all, sorry I did a disappearing act for bloody ages!)

I've been lurking on the thread for a while but haven't posted (felt a bit of a fraud as not diagnosed...am on waiting list for diagnosis/investigation which will hopefully begin autumn) but your post is EXACTLY how I feel right now (and have been feeling for the last decade of my life since we had kids). Swimming in treacle, not getting anywhere fast. My head is really full at the moment and I don't have space for anything else but I will be back to introduce myself properly once the fog has cleared.

Solidarity @Nepmarthiturn - I have ME too and it has been an absolute arse this week. My whole body feels like a toothache, and I'm absolutely beyond exhausted...annoying because I've done everything right, but sometimes flares just happen for no good reason!

I'm so sorry to hear you have it, too @hatshoemuffin . It is the most frustrating and horrific illness. I've had it for 13 years now and before children I was doing ok, but then I had two major relapses because of Covid infections and I'm now right back where I started. It makes me so sad I can't do things with my children. Often I have to hire a nanny just to get them to school and nursery as I can't even go out.

Did manage a couple of trips to the beach in half term with them now I have the blue badge but only with friends to help one time and a nanny the second. It has taken such a toll I've mot left the house at all this week, just trying to work but even dragging myself out of bed is tough. It's so frustrating, to have a huge backlash like this from doing the slightest thing.

My friend who is a nurse has sent me some videos about links between ME, inflammation in the body, autistic burnout and stress and how all of this stuff seems to be connected in some way. It's dreadful that there is so little research into it and no real treatment, just painkillers. And now as a lone parent I can't even follow the advice to rest when I need to so it deteriorates all the time, I can't even start to get it under control again. It's scary because I don't know how long I can sustain what I'm doing atm but I have to as my children have nobody else to take care of/ provide for them.

There is now the project where they are examining genomes and trying to find out what causes it. More interest in it since lots of people have "Long Covid" which is exactly the same thing. Same thing happened to lots of people in areas affected by SARS, MERS, Ebola.

I don't think a lot of people realise how painful and bad it is. This article the other day was interesting:

https://www.theguardian.com/society/2023/jun/08/long-covid-impact-quality-of-life-cancer-study

I hope you're doing ok and manage some rest this weekend.

I've been lurking on the thread for a while but haven't posted (felt a bit of a fraud as not diagnosed...am on waiting list for diagnosis/investigation which will hopefully begin autumn) but your post is EXACTLY how I feel right now (and have been feeling for the last decade of my life since we had kids). Swimming in treacle, not getting anywhere fast. My head is really full at the moment and I don't have space for anything else but I will be back to introduce myself properly once the fog has cleared.

@PatienceOfEngels I'm glad you decided to post. You are not a fraud! And very welcome here.

I think having children brought it all to a head for me, too. Before that my coping mechanisms meant I could mostly "pass" as functioning ok, by focusing on work and having a lot of downtime, absolute silence and do nothing after work for an hour or two, etc. But when you have children it's relentless, you never get a break, just from work to kids and fall into bed and start again and I think it completely burns you out after a while. I used to go away for a week to a beach and do nothing at all and reset but without that I don't know how to make it better. Endless phone calls, emails, demands, organisation, household tasks and there is just no respite. At this stage I think I've gone from swimming in treacle to drowning in it. 😬 Burnout is awful and I think the demands and juggling that lots of people find difficult, when you add autism on top, just become unmanageable unless the day was 36 hours long.

So sorry to hear that you're struggling in the same way. How old are your children? I tell myself it'll get easier when they're bigger but maybe I'm kidding myself. 😆

@TheShellBeach just googled Torridon, my God it is breathtalingly stunning!! Have you been there before?

*breathtakingly

Then found this! 😧

www.thetorridon.com

If you're going there, can I hide in your suitcase? 🤣