transgender cuz im tradin u pussies in for a sack

None on 'so you became disabled in your twenties and it has progressed to the point you need support with personal care to cope with the fatigue and you're nonverbal and autistic. How do you navigate this new dynamic with strangers and communicate important things like wants and consent? And how do you not feel ashamed or embarrassed because you 'don't really need it'?'

Essentially turning my life into a routine similar to what it would be like to be in an institution but on my terms.

Detailed menus for food (how I want it cooked, salted), grocery list (which meant cutting down and simplifying how I eat and eating repetitive food with emergency meal options).

List of chores and their days: a day to pick up the groceries and put them away, a day she cleans the bedroom, a day she does the floors. once a month collect medicines... All suited to give them lots of time and account for unexpected needs.

Instructions sharpied on the washing machine, labels written on the cupboards and taped above the microwave

My clothes are basic: all machine wash and no iron, can be mixed and matched, my bedsheets can be mixed and matched

I do meds once a week and have a proper weekly pillbox with a list taped to it. I hated accepting this signifier of illness.

My bath days are on days she's not here which is a recent luxury because I used to need help there.

Boundaries

My bedroom is off limits unless it's bedroom day. Weight and romantic life are off limits.

I have not found a way to communicate that I'm not a psychologist in 20 years of this. Carers are often in the process of being broken by the job: they vent (a lot), they get burn out, they find it easier (and make more money) to do any other job.

It hurts the ego every single time you meet a new one and initiate them to your routines. Those stupid house management binders like seen in mormon influencer households actually do streamline your life even if they feel dehumanizing.

A lot of this stuff was really hard. I felt like if a baby could feel shame. My brain screams the R word at me every now and then for not being able to safely cook or lift things, for not being able to explain myself then sitting through agony rather than seem impolite.

The urge to do the chores yourself is massive even after a hundred energy hangovers and injuries. Write those down because you think you don't need it until you notice you haven't taken care of yourself in weeks trying to keep up with other things or you repeatedly get ill.

What did help was treating the carer's job as dignified: them cleaning for me is not degrading, it's their job. Them witnessing me in distress is not degrading, it's their job and they rise to the occasion and feel proud they got to help someone.

Try and remember that you're providing a respectful, safe work environment for people who would otherwise be unseen or mistreated when working in cleaning/catering or in care homes. Holiday gifts and setting up options for their holidays in advance help. Checking in about balancing their work load over the hours they're given is an important use of your limited social time/energy so it feels more like teamwork to them.

It will feel very weird at first but if you're upfront about communication difficulties and needing time to write things out for example, that can help. The big hurdle in time will be getting enough hours allocated (unless you pay for extra under the table) and not losing carers to their agencies being gigantic soul-sucking body-breaking machines.