Mary StarbuckOct 1, 2022
1 October
I'm going to attempt some crafting. Finally made enough space in all the clutter in my head so that it doesn't feel as impossible as it did for the last few weeks. Took me all day to get to this point.
Show threadMary StarbuckOct 2, 2022
2 October
Finished making a birthday card today. Ran up against a couple of challenges and I'm pleased I tackled them. Feeling my new normal is about either coping or not instead of being actually ok.
Show threadMary StarbuckOct 4, 2022
3 & 4 October
Missed my update yesterday. Conflicts where good things were also challenging.
A long phone call was welcome but left me feeling like I wasn't connecting fully. It interrupted the start of a craft project. A piece of tech kit to assist with caring is taking quite a bit of effort from me. I get the feeling the provider sees it as a gloriously generous success, yet I'm left with more to do just so I can use it.
Show threadMary StarbuckOct 5, 2022
5 October
So tired. Starting to seem ridiculous of me to think I have anything worth sharing other than the same old not coping, exhausted and hopeless I come out with day after day.
Show threadMary StarbuckOct 6, 2022
6 October
Today has been a bit different. Not sure yet if that is good. I met with someone I hope might be supporting me. After that I managed a little crafting just to please myself which is a refreshing change. I couldn't exactly explain what I was doing in a way that makes sense, but it seems I was being mindful whilst sorting through some of the collected materials that needed putting in order.
Show threadMary StarbuckOct 7, 2022
7 October
Had a phone call from a consultant today. It was no worse than I expected, but it has reminded me of all the reasons I dread talking to doctors.
Show threadMary StarbuckOct 9, 2022
9 October
Socialising yesterday. Emotionally complicated. I couldn't really think about anything else. Still chasing my tail. I haven't even got dressed today.
Show threadMary StarbuckOct 10, 2022
10 October
Diary fail. Forgot 2 appointments this morning. Had a lucky escape from consequences. I know I was extra foggy yesterday after socialising, but I didn't mean to blank out checking my calendar. My subconscious obviously had other plans. Let's hope I do better in the next fortnight when I have a short trip away. It would have seemed easy to manage a few years ago, but now I dread having to prepare.
Show threadMary StarbuckOct 11, 2022
11 October
We managed a lovely walk today by the river. Heard about mast year so went to survey the acorn crop. Noticed the sloes are very big and brightly coloured too. It was beautifully warm and sunny. Not sure why my brain has allowed me to enjoy things today, but it's been so good. Also thinking positively about my latest craft project. After a very long delay, I've done some tidying of my clothes and shoes.
Show threadMary StarbuckOct 12, 2022
12 October
Made some good progress with my tidying and organising today. Such a relief to tackle challenges that were overwhelming before without hating myself for having taken so long. A bit alarmed that my to do lists have stalled though.
Show threadMary StarbuckOct 13, 2022
13 October
"Interesting" start with being woken up early by mistake but saw the funny side. Good phone call with the OT. Feels helpful. Found a little time for some crafting.
Show threadMary StarbuckOct 14, 2022
14 October
Brainfoggy day. Couldn't get my head round getting to an appointment. Just made it (with help). Spoke to a lovely person who I think can offer some valuable support.
Show threadMary StarbuckOct 15, 2022
15 October
Doing a quick update but I'm struggling to find stuff to comment on. Been rushing around so much to get laundry done and hung up, then in out of the rain (twice) that I've used too many spoons.
Show threadMary StarbuckOct 16, 2022
16 October
Been trying to get ready for a trip I've got coming up. I'm very anxious about it which is taking a lot of energy, but also annoyed with myself because it should be something to look forward to.
Show threadMary Starbuck
17 October
I've noticed this morning that with trying to get ready for going away, I've not kept up with checking my emails for a few days. Very uneasy that doing fun things means that I can't manage everyday essentials. I've been making an effort to focus on physical tidying more in the last few months, but it seems I've just used up the spoons I needed for my admin which is now neglected.
Oct 17, 2022 at 9:14amWeb
Show threadMary StarbuckOct 18, 2022
18 October
I'm noticeably less able to cope with pressure today. Maybe the combination of a dental check up, preparing for a big social commitment and being forced to take care of issues that I am way out of my depth with.
Show threadMary StarbuckOct 19, 2022
19 October
Still feeling the strain from yesterday but as if I've not slept. Call from GP surgery re prescription of Complan for the person I care for. NHS now encouraging self funding of such items available without prescription. I would rather they just say it's not going to be prescribed anymore than go through the offensive pretence of asking for the person's weight as some kind of means test. What does that prove?....
Show threadMary StarbuckOct 19, 2022
...I hate it when people can't just say they don't know the answer. In our case it's for hydration not nutrition, so asking for a weight makes me very anxious because this person had no clue why it's a problem. Availability over the counter doesn't give the same assurances as with prescribed items, never mind whether the cost and accessibility are manageable.
I just can't cope with the NHS
Show threadMary StarbuckOct 21, 2022
21 October
Missed yesterday with too much to think about. With a lot of effort and support I am out of the house and on a train. Hope to have some nice pictures to share soon.
Show threadMary StarbuckOct 22, 2022
22 October
An extra challenge has made things a bit unmanageable for me today. Working really hard to keep up.
Show threadMary StarbuckOct 24, 2022
24 October
Still trying to keep up with reading as much here as I can, but not able to interact other than a few likes. Will do a proper update soon.
Show threadMary StarbuckOct 25, 2022
25 October
Having a bad time. Got home from a weekend break last night. Going away is getting harder for me. There were some really wonderful moments but I can't pretend that my difficulties are not a problem.
Show threadMary StarbuckOct 26, 2022
26 October
Had an appointment with someone who seems understanding and authentic. Then had to have a sleep. Turned off my phone and bleeper, which is something I really struggle with. Still feel like I'm almost asleep.
Catching up with Doctor Who.
Show threadMary StarbuckOct 28, 2022

27 October was tough. Tearful several times.

28 October - feeling some positivity filtering through.
Recently changed from chiropractor to osteopath (also male to female) and her understanding is very validating.
Hearing her effortlessly feed back to me recognition of my health problems almost escaped me because I was braced for the usual dismissive comments. Finally sunk in days later. I want to work on embracing it and carrying forward.

Show threadMary StarbuckOct 28, 2022
28 Oct continued
Now I'm recovering, I can say the trip to Amsterdam was lovely. I was too stressed for photos but I enjoyed the train journey, bumping into my old boss, pancakes, Van Gogh museum, the canal boat trip, Stroopwafels being made while we watched, Miffy, bicycle culture, many pride flags, amazing myself by not collapsing in an exhausted heap, closing my nose to the smell (which gets boring quickly).
Show threadMary StarbuckOct 29, 2022
29 October
Covid and 'flu vaccinations, some shopping that has waited a long time, a few bits of ironing and a little internet shopping. That's it for today.
Show threadMary StarbuckOct 30, 2022
30 October
Feeling a little groggy. Blaming yesterday's injections. Tried pumpkin pie for the first time (very lucky to have someone in the house who likes baking).
Show threadMary StarbuckOct 31, 2022
31 October
More grogginess today and quite unfocused and disorganised but managed a bit of laundry. Good to talk to my therapist. Was nice thinking about some of the better bits of the trip to Amsterdam as well as the hard parts.
Show threadMary StarbuckNov 1, 2022
1 November
Had an idea about making organisation more comfortable. Trying it out today. Worried I'm getting my hopes up to high.
My sleep was very disturbed with wind noise from outside. Had a weird dream I saw a puffin landing on a cow and lots of people were amazed by this. Then it flew to me and I asked someone to take a picture. The puffin then turned into a small child in a costume. The whole thing was a trick.
Show threadMary StarbuckNov 2, 2022

2 Nov 1
Rant alert.
Got a response to a letter my social worker wrote to my GP which included quotes from me. The main theme of my points being "there are no services to meet my needs". My husband had spoken to my GP about the letter.

Asked GP to request services being commissioned and if my points could be recorded in my notes. GP agreed (I still haven't plucked up courage to view notes).

Show threadMary StarbuckNov 2, 2022

2 Nov 2
Next thing I hear is a copy of a reply to my GP from the complaints team. I wanted action (or care) not complaints. GP must have not mentioned this came from my social worker after she had failed do anything for me.

They've quoted Deputy Director for Adult Mental Health as though I don't deserve to be treated like I count. Also "we commission an Asperger's service...to assist establishing differential diagnosis" What do they think that would do for me?

Show threadMary StarbuckNov 2, 2022

2 Nov 3
Re concern about mental health not accommodating intersection of autism and ADHD needs "expectation and requirement is...services will work together...and coordinate..." They're saying all my experience to the contrary is fiction?

They answered that I just need a social care assessment. Also if beyond provision I'll be referred for NHS Continuing Healthcare assessment. Already been told by someone else we won't meet the threshold for CHC so shows they're not on the same page.

Show threadMary StarbuckNov 3, 2022
3 November
Feeling a bit lost without the routine of reading tweets which is now not the same (I still keep trying).
Trying to remember to look for comfortable and authentic ways to manage what I need to get done.
Show threadMary StarbuckNov 4, 2022
4 November
Today seems a bit easier. Looking forward to a call with the OT.
Exploring getting help and I'm learning that I'm attached to tasks that I own and want to keep that way. Hard to pick out the ones that I want to have someone else handle.
A large block of my life seems pointless if someone else is doing it without understanding my context. I lose the meaning those tasks were giving me which is very alarming. I need a way to trust someone to understand before they start doing.
Show threadMary StarbuckNov 6, 2022
5/6 November
Feeling very unfocused. Not really much use for doing an update but I'll just put this here so I don't get annoyed with myself later.