Diary / 2020-05

NotReally · May 2020

I have an overwhelming set of tasks before me and I've been struggling to ... well, do anything at all.

So I need somewhere to keep a basic diary, and this is the only semi-appropriate place to do so. If it's private, I won't update it on a regular basis (I've tried). So, I hope this is ok. I'm not really expecting anyone to read or participate, and it ... well, I'm not sure why anyone else would want to read along ...

Why I need to do this:

Help keep track of everything I need to get done
Help to remember that I am making progress (I think?)
I tend to forget the above (thanks ADHD!)
Help decision making on task prioritisation
Get a perspective on how things are changing for me over time
Attempt to deal with frustrations in a ... not negative manner

I need to add in stuff I have managed to achieve retrospectively ... shedloads has happened in the last, uh .... 6ish years of insanity.

NotReally · May 2020

2020-05-03

Today

Cut up and bagged two rolls of carpet that I ripped out of the main bedroom ... sometime in the last few days. Oh, last Monday evening.
Picked up almost everything that was at my friend's place in Winchester; only clothes on hangers still there, including my suit (like I'll ever need that again).
Unloaded most things from the car
Moved the removed shower seat from the conservatory to the garage
Did a wash load - but it's not hung up / dry yet, and I need the bedding that's in it for tonight. This is an issue.
Had a hot meal - for varying values of "meal" (two cheese and bean pastry things)
Ran and emptied the dishwasher - making a note here, huge success! This hasn't ever happened in the same day before. But maybe I should have focused on getting the bedding dry first ...
Showered early, 6pm-ish - this is huge, I might be able to get to bed before midnight (if I solve the bedding issue)

Why did I break lockdown by going out and picking things up from a friend's place?

I was homeless from October last year, until 27th March this year, sofa surfing between Winchester and Ruislip. My possessions are / were split between the two places, as well as a storage lock up in Cheshire. The main things I needed from Winchester were kitchen items I've been managing without, but will need for next weekend as my son will be staying with me.

Clearing the Cheshire storage locker will be difficult, and I need to do it by the 28th of this month.

Yesterday

Removed the seat attached to the shower wall (previous owner / occupant was physically frail)
Sealed up the holes in the shower wall with silicone sealant
Sealed up gaps in the kitchen window, via which (I think) the ants where mounting their assaults
Sealed up the gaps between the flooring and the walls in the porch - which were also an ingress route for ants (but a different clan I think)
Cleaned up after the above jobs

I am

Mentally exhausted. No change here.
Annoyed that I have not organised a place to note down needed shopping items
Worried about being prepared for next weekend
Worried about admin things - gas / electric letters arrive this week, still not opened them yet

I need to do

Too much. Run out of words, need to make this list tomorrow.

NotReally · May 2020

2020-05-04

Today

Not a very good day
Two phone calls with housing officer, got shared ownership rent payment set up
Opened two letters from British Gas
Some of yesterday's washing dried
Started to clean airing cupboard, but not finished it yet
Talked with ex about plan for having my son next weekend
Did a bit of work in my "bed desk"
Contacted council re council tax
Remembered to put out black bin
Tidied in kitchen a little bit

I'm really just not feeling good about anything; there is so much to do it's overwhelming. Stressing about what my finances are going to look like once all of the bills, etc, are in place.

Chloe_Scope · May 2020

Thank you for sharing this with us @NotReally. i'm sorry things aren't great at the moment.

Sounds like you are getting lots of jobs done. Just wanted to check in to see how today has been.

NotReally · May 2020

2020-05-05

Chloe_Scope said:

Sounds like you are getting lots of jobs done. Just wanted to check in to see how today has been.

Thank you Chloe; today has been ... both better and ... about the same as yesterday. Didn't get in to bed until after 1am this morning, because I needed to finish cleaning the airing closet. Woke at 5.40am, but managed to sleep again from about 7.30 to 9.

I am getting through things, and a big part of keeping this diary is to remind me that I am making progress, but there is just so much to do, and when I was planning this in January, I didn't plan for a lockdown and that I'd be unable to get help from social services, etc, with the things that I just shouldn't be trying to do myself.

The main goal is to work towards some kind of sustainable baseline living situation, where I can look after myself in the present circumstances. Until I get to that point, day to day life is going to be difficult. I am living out of half unpacked boxes, and have no reliable and sensible way of feeding myself. Heck, the first couple of weeks here I was sleeping in the conservatory in a hammock I'd made.

Compounding the situation is that I am trying to deal with all that has happened; the last six-ish years since my diagnosis has been ... just insane, especially when considering everything else before that. Counting since I was 5, the move here last month was number 76.5; yes - that's seventy six and a half.

Trigger warning; child abuse

Monday morning I was listening to interviews on the radio with parents of adopted and special needs children about their experience with the lockdown. One parent said something that really struck me: "he's a lovely boy, but at 5 years old he's experienced more trauma than most people do in a lifetime" ... and I thought "yeah, that was me at 5 years old". When my mother met my father he was in a UFO cult, which she joined. After she fell pregnant with me (how does a person "fall" pregnant? just doesn't seem like an appropriate verb), he wanted nothing to do with the situation. By the time I was 5, I'd been left multiple times at foster homes; my grandmother and auntie (who married my father at some point - lucky they didn't have children) would collect me when they found out, and I'd end up back with my mother some time later. Physical abuse ... well, it was a thing, and in those days it had to be completely over the top for anyone to pay any attention. Unfortunately, I was not able to extract myself from those circumstances until I left home just after I turned 15.

I tend to forget those things, they're just ... how things were. Normal for me - but just not f$£k!ng normal, for anyone ... and I think I need to take all that I've had to cope with in to account when I assess how I am doing.

Today

Cleaned some of the kitchen things I picked up on Sunday, so I now have medium saucepan with lid, which means smoked paprika and chilli popcorn for dinner! Every day! Because it's easy! And tasty!
- I know this isn't ideal, but it's better than the alternative at the moment
Got indented lists working on the Scope community forum
Tracked down the likely nesting place of ant clan #2 and ... hopefully they will live a happy outdoor life from now on
Cleaned the clothes rack I picked up on Sunday
Cleaned the wall and outsides of the built in wardrobes in the main bedroom - now ready to move and set up the double bed there
Removed the extraneous, uh, 'bits' of the wardrobes. Don't know what to call them - no functionality, ugly, and worst of all, complete dust traps.
Had a long (2-3 hour?) phone call with a friend; was a really good discussion, mainly about neurodiversity and my presentation / talking work. Couple of good ideas and refinements out of this; need to remember to add them to my notes.
Finally cleaned the pan I used the weekend before last when my son was here. Things like this are embarrassing to talk about.
Think there's more, but I can't remember

Tomorrow

I need to drive to Hook and get my prescriptions - I'm about to run out. This'll be an hour and a half out of the day, maybe longer.
May as well go to the supermarket on the same trip
Still not got a list set up for shopping; this is a problem .. can't remember the things I need
Need to fill out council tax relief form
Set up double bed in main bedroom
Try and start to clear some boxes from the living room, to be ready for Friday.
- Maybe even get the futon sofa thing set up?
Remember to ask my key worker from Mind about getting help for UC / new ESA work capability form

Site developers: the "Preview" functionality does not seem to display <ul><li>Lists</li></ul> correctly.

woodbine · May 2020

I always find that making a list of everything I need/have to do and crossing them off as I do them really helps, especially with things are atm you need to achieve something every day.

NotReally · May 2020

2020-05-06

The trip to pick up my prescriptions was, as I thought it would be, a huge drain on me, thus this retrospective update.

woodbine said:

I always find that making a list of everything I need/have to do and crossing them off as I do them really helps, especially with things are atm you need to achieve something every day.

Lists are essential - I have lists of lists, and even some lists of lists of lists. The purpose of this diary tool is different from having lists though; primarily it's to help me see what I have actually achieved, which will help keep my morale and momentum up. Secondarily, to help me determine what works on a day to day basis, and what does not, so I can use my time and energy more effectively.

Lists are good to keep track of what needs to be done, but I don't find them helpful for tracking things that I have done, as I often find that I need to do things not on the list in order to get things that are on the list completed. In theory I could retroactively add the things that I've done to the list - I've tried this, but it doesn't really work for a couple of different reasons. Also, having this diary here on a public forum, even if no one reads it, gives me a sense of obligation to keep it going, which is really helping.

Picked up prescriptions from Hook
Went to supermarket after pharmacy
- This was a minor disaster, but I did get the things I will need for having my son this weekend
Picked up post from my postal address in Hook
Phoned doctor in the morning and arranged a phone appointment
Had phone appointment with doctor
Had impromptu phone meeting with community support keyworker
Arranged remote meeting to get my UC / ESA health assessment form filled out (via community support keyworker)
Got Könrad der Zerstörer[1] emptied, cleaned, charged, and then got the main bedroom vacuumed
Moved double bed into main bedroom
Did a wash load

Hung the wash load up to dry! On the same day!

Moved vacuum bagged clothing and bedding into a neat pile, ready to be unbagged and organised
Worked a bit more on the "desk bed"

This isn't something that needs doing at all, but having a small side project like this can help me decompress and process other things a bit

Unpacked and put (most of) the shopping away; doing this required clearing out and reorganising a lot of the fridge and the freezer

[1] The robot vacuum cleaner formerly known as "Bessie", who recently decided that they were no longer happy with their assigned birth gender, and has now transitioned; personal pronouns are now "it / him" and changed its name to Könrad der Zerstörer. Gender transition is much easier when you are a robot vacuum cleaner.

Chloe_Scope · May 2020

Hi @NotReally! Lovely to hear what you have been up to.

I'm sorry the radio brought back old memories, this must be really difficult to process. Have you received support in managing these?

It sounds like you have a huge project on your hands with little support. Please do take things easy, you are doing amazingly well and I love the lists. I too rely on these to keep track of things.

I hope you have a good bank holiday weekend.

NotReally · May 2020

2020-05-08

Very quick update, my son is here for the weekend and I probably won't update again until Sunday evening.

Yesterday

I ... did a reasonable amount yesterday, but I honestly can't remember much of what I did. Wednesday's pharmacy / shopping trip had more of an impact on me than I thought. Mostly I was trying to focus on what I'd need to have organised for my son coming today.

Cleaned down the double bed base
Ran the dishwasher

Today

Put double bed together
Unpacked mattress for double bed
Started room change over to main bedroom
Cleared room that will be an office / electronics workspace
Started to clear boxes from living room to upstairs
Son arrived midday

Chloe_Scope said:

Hi @NotReally! Lovely to hear what you have been up to.

Lockdown must be hitting you hard if that's the case!

But thank you.

Chloe_Scope said:

I'm sorry the radio brought back old memories, this must be really difficult to process.

Well, it was actually kind of a positive thing; I need reminding that my path through life has not been easy and that I am doing pretty well overall ... especially when one considers that people on the Autistic spectrum have suicide rate 9 times greater than the average rate.

I'm still here. Still standing.

Chloe_Scope said:

Have you received support in managing these?

Well ... as usual "it's complicated". Heh. I've been seeking treatment / support for PTSD for a bit over two years now; I was finally due to start a trauma therapy course at the end of March ... buuuut ... yeah. I am still on the list for that course when it starts again, but I do need to change GP when lockdown lifts, and if I have to do that before the course starts, then I'm back to being on a waiting list in my new catchment area - and I'm not sure if they offer anything similar in this region.

Chloe_Scope said:

It sounds like you have a huge project on your hands with little support. Please do take things easy, you are doing amazingly well and I love the lists. I too rely on these to keep track of things.

It is huge, and I can't even get started on the bulk of what needs doing until the lockdown starts to lift; I need decorating supplies, access to the local tip, and some building supplies. Crucially, I need support with the things I can't really do for myself.

Chloe_Scope said:

I hope you have a good bank holiday weekend.

You too!

NotReally · May 2020

2020-05-12

Had a migraine Sunday evening, so yesterday was a bit of a write off. Today has been slow, tough going.

Weekend was good - lovely to have time with my son, but stressful with the current circumstances here, and I had to continue to organise & tidy both Friday and Saturday.

However - the living room is now (mostly) cleared! So we managed to get some time playing with the Lego trains, which was great as that's something we've not been able to do for more than 3 years now.

Unfortunately, the carpet is much worse than I thought, so my attention has been turned to how I can manage to remove it sometime soon, which is not something that's going to be easy to manage. Right now, I need to focus on getting the storage unit in Cheshire cleared, by the 26th. It's going to take two trips in a long wheelbase Transit, and they'll be long days, starting at 0530.

Today

Phone meeting with housing officer, made progress with Council Tax relief form
Progressed finding someone to help me work on my LinkedIn article series ("Neurodiversity in the Workplace")
Assessed cost and viability of sourcing flooring materials

It's pretty early still (1700-ish) and I'm thinking about bed already; hope to get a little more done, mainly moving a couple of things from the conservatory upstairs.

Chloe_Scope · May 2020

Some good progress @NotReally! How are you today?

NotReally · May 2020

2020-05-15

Chloe_Scope said:

Some good progress @NotReally! How are you today?

I ... the last few days have been really difficult. As far as progress goes, I've lost most of the last couple of days. I am unsure what this is due to; likely it is the emotional stress starting to catch up with me, but I am also struggling with not having support - there is a lot of "analysis paralysis" happening, and that is really difficult to cope with in this situation. A compounding factor is the time pressure of having to have the storage unit in Cheshire cleared in ... 11 days.

I'm starting to make a bit of progress again late this afternoon, but it's tough going. I both need to try to keep the day to day necessities ticking over (food is a moderately important thing after all), along with actually moving things forward.

There is no bullet list today

NotReally · May 2020

2020-05-19 / Tuesday

I realised over the weekend that in the last few days I've been skating around the edge of having a breakdown. It is useful to have this insight, as it provides some warning and gives some ability to try and mitigate or avoid flying off the edge of that cliff. I was on the phone with the Samaritans for an hour and a half or so this morning, and then with my friend in Cheshire for another two hours after that. Both were very helpful in keeping my mind off of the things I need to not spend too much time thinking about and focusing on keeping taking small steps towards where I need to be.

Yesterday I raised this with my isolation support person when she phoned in the morning, and she has taken some steps towards getting some practical assistance, as I am now failing to keep the day to day necessities under control. That was going to happen sooner or later, and all things considered, this is later - it's a wonder I've gotten this far. I no longer have even the pretence of having the kitchen under control, and food / eating is haphazard at best.

Saturday - I thought I would lose completely, but I did get quite a lot of small things done over the afternoon, including mopping part of the conservatory and kitchen; also finally finished putting the sofa-futon together in the living room (have not sat on it yet though). Bought in metal shelves from garage, and assembled one set in the conservatory; it is almost to the point where I can bring a van load of things from the storage unit in Cheshire.
Sunday - honestly, can't remember; some tidying in the kitchen and bit of progress clearing the conservatory
Monday - mostly lost
Today - support phone calls, as mentioned above, as well as with my housing officer, who's going to help with council tax inquiries. Removed and demolished the old and not very nice arm chair, as I won't have enough room for it; salvaged what I was able to from it (wood, etc) for later use. Managed to get black bin stuff together and put it out. More slow organising in conservatory.

I have ... 8? days to clear the storage unit in Cheshire. As a goal, this is keeping me going; I am, uh, Autistically focused on it. Am somewhat concerned that if there is not something in place in terms of support that achieving this will be the cliff edge for me ... but I've done all I can to avoid that for now. It occurs to me as I write this, that over the last 4ish years I have become so used to this near breakdown existence, that it's kind of normal ... I'm kind of calm as I sail towards the oncoming storm. It's both reassuring and worrying.

* Addendum - Also finally managed to order some ESP32 development boards the other day. When I am able to spend some time on this project they will form the beginnings of my "(hopefully) intelligent home support system"; I have a number of thoughts around integrating these, as well a Raspberry Pi, with environment sensors, the central heating system, my phone, in order to help me with medication / food reminders (no, reminders on my phone don't work for me), resting / sleeping reminders, voice or automatic control of lights & heating (I'm a software developer - there's no way I'll have an Alexa or Google device active in the house, these companies have deeply troubling cultural and systemic issues that represent a security and privacy threat - and besides, they're just not very good).

Once / if I get it to the point where there's a well rounded customisable feature set, I'd like to look at spinning up a social enterprise to supply the system to disabled people via charities. This is the kind of thing I need to be spending my time on, not trying to do things that I am just incapable of doing, such as organising where I keep my clothes or opening post from 2018. I deeply respect people who are able to do those things - I can't.

Hmm. I bet I can get it to automatically reorder my medication too.

Chloe_Scope · May 2020

Hi @NotReally sorry to hear you have been struggling. It sounds like you have a lot of things going on at the moment but I am glad you were able to reach out for support.

Some really good progress on the house! You can order repeat prescriptions online, if this is something you'd be interested in then your GP can help set it up.

NotReally · May 2020

2020-05-21 / Thursday

Ok, bit of positive change the last couple of days. Someone from a local community support charity visited yesterday, and did an assessment; we talked for quite some time, as her son is also on the Autistic spectrum, and has ADHD. Going forward, she needs to write her report, send it to my social worker, and then magical admin stuff happens; she thinks there's a chance that support visits could start towards the end of next week ... this is such a huge relief.

Today

Finally booked a van to clear the storage unit in Cheshire

I've booked a Luton van for Saturday, and plan on clearing it in one trip
It is ... a somewhat ill advised plan

Put on a wash load, and (mostly) hung it up outside
Unloaded and loaded, then ran the dishwasher
Some minor email & admin type things, provoked by having to organise documents, etc for the van hire
Uh ... that's it; most of today was consumed by analysis paralysis around deciding what and how to do about the van hire / clearing the storage

I have mostly lost track of things that need to be done, some of which are pretty vital ... I need to somehow try to get on top of this next week.

Chloe_Scope said:

Hi @NotReally sorry to hear you have been struggling. It sounds like you have a lot of things going on at the moment but I am glad you were able to reach out for support.

Thank you @Chloe_Scope ... I think things may have turned out for the best, as the situation has caused more information to come to light about what local services are available and how they work, which neither myself or my social worker knew about, which is understandable as while I'm on her case load, I'm not actually in her geographic area. Just highlights the importance of good local knowledge and connections. Just knowing that something is happening and on the way is hugely helpful to managing my state of mind.

Chloe_Scope said:
You can order repeat prescriptions online, if this is something you'd be interested in then your GP can help set it up.

Oh, absolutely - but I want that to happen without my input, beyond the house asking me "Should I reorder your prescriptions?" and me saying "Yes, please", then not having to think about it until I get the notification that it's been done (or that there's been an issue - note: need to examine how fail states for these tasks are managed). It may sound like a small thing, and it kind of is, but for someone with ADHD, having to deal with many small things rapidly builds up to be a huge mental burden, which impacts in ways that are not immediately obvious, but can have a profound negative effects in unexpected ways.

NotReally · May 2020

2020-05-26 / Tuesday

Uh, yeah, lots of things.

Quick note of things that need doing:

Phone NHS Blood Donation
Investigate if planning permission for garage door replacement needed
Car roof bars
Post to local groups for pallets (for shed construction)
Consider dishwasher replacement or possible to repair current?
Investigate physics engine simulation speed in Unity
Recharge insect bat (find charger or dismantle and recharge)
Contact AAA regards continuing training later this year
Determine what "needs doing" by Saturday (son staying)
Determine "nice to have done" by Saturday
Consider approach to subjects raised by ex (maybe: who to discuss this with?)
Catch up diary with last weekend
Prep for Friday: clean kitchen corner with phone master socket, clean up VDSL modem / router
Set up small network hub and printer

Edit:

Important - rearrange DWP Health Questionnaire form appointment
Check over lawnmower - need oil change?

Chloe_Scope · May 2020

A very comprehensive list @NotReally! How are you doing today?

If you ring your GP they might be able to put this support in place for your prescriptions. It would however depend on the surgery.

NotReally · May 2020

2020-05-29 / Friday

Last Weekend

Picked up Luton van Saturday, 9am
Arrived at storage unit in Cheshire, 12.30
Found that I couldn't leave bed there as had been arranged
Moderate panic, but managed to get friends to advertise it for free on various FaceBook groups; found 61 y/o woman who'd been sleeping on an air mattress for some time
Got van loaded and ready to go at 7.30pm
Dropped bed off, back on to the M6 at 8.45pm
Arrived home at 12.30am Sunday morning
Unloaded, dropped van back at 6.00am
Showered, in to bed at 6.40am
Up at 3pm Sunday, two bowls of cereal, back to bed
Up at 9pm, one bowl of cereal, back to bed
Up at 6.30am Monday

Most of the week has been recovering and trying to organise everything; I've not been able to shut the garage since last weekend, although I'm almost there.

I have my son this weekend, until Monday afternoon, which ... time with him is always great, but it's stressful at the moment, due to organisation / food / etc. Given that the summer is going to be somewhat unusual with childcare, I need to be as well organised as possible, because it's extremely likely that I will have him for a pretty significant portion of the school holidays ... which I'm really looking forward to, but, yeah, I need to be organised for it.

NotReally · June 2020

2020-06-01 / Monday

An enjoyable weekend, aside from the ridiculous time involved in preparing meals and keeping everything running. This morning, for the first time in a very long time I had, briefly, a sense of normalcy ... which was really good. Dropped the boy back with his mother this afternoon; today was an inset day, his school starts tomorrow with the first of the restarting pupils. It'll be quite a change for him, going from being one of half a dozen at school to being one of maybe sixty ... I'm a little concerned how he's going to be; the school environment since the start of the lockdown has been really good for him.

Need to borrow a petrol can so I can get the lawnmower running
Still cannot close up the garage
Still have piles of things out in the back garden
I need to have everything undercover and ready for rain on Wednesday

Much of the list from last Tuesday still needs doing. Will try to get a bit organised tomorrow, along with getting everything ready for the weather turning on Wednesday. Need to sleep now.

NotReally · June 2020

2020-06-08 / Monday

Over the last week; an incomplete list, in no particular order:

Review meeting with social worker
Set up printer
Phone meeting with health assessment support person
Organised documents in preparation for filling out UC Health Assessment Questionnaire
Organised and reacquired UC Health Assessment Questionnaire form (lost previous one)
Reviewed draft social services report and sent reply
Phoned PIP service to change address
Replied to an introductory email from a friend who runs a specialist recruitment agency (didn't hear anything back from the client, so ... meh)
Inquired about, then applied for a free distance learning course (NCFE L2 Understanding Autism Online Course)
"Organised" the garage and garage things enough to be able to close the garage
"Organised" the piles in the back garden enough so that they're not in the back garden any more
Bought a roof rack for the car
Bought concrete and sand in preparation for laying a course of bricks to start making the garage weather proof
Phone meeting with housing officer for support with admin tasks
Collected post
Requested repeat prescriptions

I've done fairly well all things considered, especially given that I essentially lost 2-3 days last week.

Friday saw the last of the regular morning support calls; the person who was doing these has started to become busy again and no longer is able to make this time commitment. I am already finding this difficult.

The process of getting in home support is progressing; the financial assessment interview is booked for next Monday (via phone of course). Although there are no firm plans in place yet, I need to be prepared to have the boy for 5 nights a week from Sunday 19th July, which is about 5 weeks away ... and I have to be in a much better place than I am now, or I am not going to be able to sustain that. Given that there really are no other childcare options, I need to be prepared enough by then.

Some Observations

While I've not been especially diligent in keeping this diary up to date, it's still been helpful in giving me insight into day to day activity, and a couple of things have become apparent.

Usually, I have a number of good days (~3-4), and a number of difficult days (~2-4). The difficult periods are more pronounced following large or intense tasks (no surprise).
I generally only make decent progress when, in a day, I focus on one activity, or type of activity, such as housekeeping, organisation, house improvements / maintenance, administrative things, technical tasks / projects. This is problematic, as things like feeding myself falls into the "housekeeping" category, and when I focus on other things the necessary self care / maintenance tasks go by the wayside.
There's a huge amount of time and energy lost in "analysis paralysis"; I mean, I knew this already, but ... it's just so egregious with my current circumstances.

At this time, I am unsure of management strategies that will help me mitigate or capitalise on these things. Initially I think it would be helpful to get better metrics to track "good / difficult periods" and "decent progress", but I'm not sure how to do that yet either.

NotReally · June 2020

Chloe_Scope said:

If you ring your GP they might be able to put this support in place for your prescriptions. It would however depend on the surgery.

The situation with my GP is a bit complicated, as, with their consent, I am currently living outside their catchment area; this is due to the combination of being homeless, and Covid-19. Also, I have a couple of "controlled" medications (all medication is controlled, but ... ), which makes things additionally difficult. Once I can transfer to a local GP I will look in to the online services, which will help, and which is a requirement for automating the ordering on my side anyway.

Diary / 2020-05

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