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Diary / 2020-05

NotReallyNotReally Member Posts: 13 Connected
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.



Replies

  • NotReallyNotReally Member Posts: 13 Connected
    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.





  • NotReallyNotReally Member Posts: 13 Connected
    edited May 4
    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_ScopeChloe_Scope Administrator Posts: 8,324 Scope community team
    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. :)
    Community Partner
    Scope
  • NotReallyNotReally Member Posts: 13 Connected
    edited May 5
    2020-05-05
    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.
  • woodbinewoodbine Member Posts: 657 Pioneering
    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.
  • NotReallyNotReally Member Posts: 13 Connected
    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_ScopeChloe_Scope Administrator Posts: 8,324 Scope community team
    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. :)
    Community Partner
    Scope
  • NotReallyNotReally Member Posts: 13 Connected
    edited May 8
    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

    Hi @NotReally! Lovely to hear what you have been up to. :)
    Lockdown must be hitting you hard if that's the case!   :D  But thank you.

    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.

    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.

    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.

    I hope you have a good bank holiday weekend. :)
    You too! :)
  • NotReallyNotReally Member Posts: 13 Connected
    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_ScopeChloe_Scope Administrator Posts: 8,324 Scope community team
    Some good progress @NotReally! How are you today? :)
    Community Partner
    Scope
  • NotReallyNotReally Member Posts: 13 Connected
    2020-05-15

    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

  • NotReallyNotReally Member Posts: 13 Connected
    edited May 19
    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_ScopeChloe_Scope Administrator Posts: 8,324 Scope community team
    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. :) 
    Community Partner
    Scope
  • NotReallyNotReally Member Posts: 13 Connected
    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.

    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.
    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.

  • NotReallyNotReally Member Posts: 13 Connected
    edited May 26
    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_ScopeChloe_Scope Administrator Posts: 8,324 Scope community team
    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. :)
    Community Partner
    Scope
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