Debt and Caring

savingholmes

Glad you had a more positive day. Excellent use of the voucher. Getting letters of support from people who know you and can articulate your difficulties could really help - your sis would be perfect for that due to her job...

CRANKY40

PennysIntoPounds said:

That sounds like a most excellent shopping trip- not letting a voucher go to waste, getting nice things for you, sorting out a pressie, and getting nice wine in. What a day!

What a fab gift too, thanks for the recommendation, they sound very EDS- friendly. Flagging to @CRANKY40 for her and her HT in case it's of use! 

Thanks. I have feet that are so wide that I'd be better with the shoe box than the shoes. I wear gait corrected trainers (New Balance as recommended by podiatrist) and corrective insoles (made to measure via the same podiatrist and an interesting machine, thank goodness for the NHS).

WelshmansDaughter

Dad had quite wide feet too. He didn't have corrective shoes as we had to put him in these massive boots so he wasn't wobbling all over the place. 

WelshmansDaughter

Went to a physio appointment yesterday, came home in tears.
I have this idea that I'm going to go and get some kind of answers to what I don't understand. But then I just get whacked onto whatever conveyor belt system that they use to truck people through. So now, I have exercises for my shoulder 👍 but nothing for anything else. 
I feel like I keep going to the wrong people/places. 
And I do struggle to see why I have to keep going to 'professionals' when honestly, the information is easier to get and better on YouTube. 
Admittedly though, YouTube cannot massage my shoulder 🤣🤣🤣
Part of me knows that I'm not going to get to just dump my problems somewhere and get them fixed. The Repair Shop doesn't exist for ASD and life history problems.
I don't know if anyone else experiences this but I'm also noticing that people have started automatically assuming I can't do things without even asking. Yesterday I planned to take the dog out because Teacup is sick but she had already asked my aunt to do it. 
Today she didn't and came in and asked but I hadn't planned to do it so now I'm thrown. 🤦‍♀️
F**king stupid brain.

Cherryfudge

I sympathise with the piecemeal aspect of things - in some ways you have to be your own expert in yourself, somehow keeping track of all sorts of bits and pieces and hoping nothing dangerous is getting missed. On occasion I've found mentioning I'm autistic and struggle with loud voices (or whatever) is useful and results in more me-centred care. I'm not saying everyone would be on message, but where they are, it helps.

Perhaps it's a mixture of ticking the boxes so you can be seen to comply (and hopefully benefit from expertise, like with the shoulder exercises) and doing your Youtubing, where you can benefit from the community brain of people with similar experiences.

Now obviously, with taking the dog out, I can't see inside the situation so I can't advise what was going on in Teacup's head and I assume there's a wider context of people assuming you can't do things. However, from where I stand, I could imagine that maybe your aunt offered first, or Teacup thought she'd asked enough of you recently. At least she asked again, but perhaps you could create a framework for expectations where it's not clear? Like 'I'll offer to take the dog every evening but perhaps someone else could do other times'? It's really annoying when people assume you can't do things or it would be a struggle for you, but it's all mixed up with all sorts of other things that aren't to do with you and are just humans coping with their own pressures and life experiences.

This whole things about changing direction and plans being thrown is a beggar. I've known autistic people who were hugely and openly distressed by something that was planned 'for their good', to the point where they became physically aggressive. In myself, I've become aware that I cope better as the day goes on, but all sorts of things can be affected: it's harder to get dressed in the morning (change of comfort, and signalling readiness for the day ahead which will bring other challenges) than get into pyjamas at night (associated with physical comfort and entry into a safe zone of the day where I'm unlikely to be asked to encounter anything). That's a daily 'battle', worse on some days, easy on others. If change avoidance has an impact on that level, how much more when something unplannable comes to light - like going out when you were mentally set up to stay in? Then there's the really big things, whether they can be planned for or not. You seem to cope better than I do with travel - but I don't know if any casual observer would think I go through several days of not being able to initiate anything before I go on holiday.

I think what I'm saying there is that the struggle is real, but others probably don't see how real. If Teacup initiates the idea of you taking the dog for a walk, there's no element of surprise to her. She won't know you've taken off your armour that readies you for going into the cold and moving about and possibly encountering other challenges. She will just think you offered and she thought she'd take you up on it.

Being your own advocate is hard work, and understanding yourself is difficult - at least that's how I find it. Both of us are trying to put together a jigsaw map of where the tricky areas are in our lives - but nobody else can see into those maps, they're unique to us. The system is under-resourced and understanding of neurodiversity is patchy. I don't think neurotypical explanations and observations are helpful because it looks different from the inside: I'm not obsessed with dinosaurs and I don't get confused if people say 'It's raining cats and dogs'. It was never so simple. I can't expect others to get it all the time, though it would help.

Are you feeling the pressure of being back with other people around you all the time? Are your physical symptoms pressuring you? I'm conscious I've just written out a load of my thoughts and I might have missed the point entirely. I can see you feel both pressured and invalidated, so might some time to yourself help?

Sorry to go on so long. I hope today works out better. As for not being asked to do things - perhaps offer early in the day and try to set the tone for the 24 hours ahead? It's all I can think of right now.

savingholmes

I hope you feel better soon - at least with regards to your physical symptoms.

I am self-taught on ASD - and have to vocalise my needs. My counsellor is the only person in my life who ever asks me whether I need adjustments! She then helps me take a moment to think through what I need and ask for it. 

I don't know whether it is just due to upbringing / being a woman or due to ASD - but I find I can 'wait for permission' a lot - but I'm an adult - and most of my choices don't require the permission from others - they just need my decision... 

Cherryfudge

So much more succinctly put than I could manage, @savingholmes! I don't know what it is with decisions - I don't tend to know my own mind until someone puts it into words (or suggests something I'm not at ease with), yet I feel like a confident person in most respects. It's all very complicated.

KeepOnKnitting

I've just caught up after some time away. Wanted to send you some love and positive energy. You may not be able to make everything perfect quickly, but you are chipping away at it every day and reading months and months in a short space of time, it is easy to see your progress. 

WelshmansDaughter

SH and Cherry- that is called demand avoidance. It relates to executive function and black and white thinking. 

I am just popping in to say that my phone is now sleeping with the fishes. I was taking pictures when a wave startled me and I dropped the phone. Much hilarity ensued but my main feeling was relief that it was gone and I am no longer tied to it. That was last week and I have yet to replace it. I am using this time to gain a sense of perspective on my engagement with life and hopefully reducing my dependence on my phone.   

savingholmes

Eek to losing your phone. I bought a waterproof one for those kind of calamities but it isn't the weather for swimming. Hope things settle for you soon