Mary Starbuck6 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.
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.
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.
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.
Socialising yesterday. Emotionally complicated. I couldn't really think about anything else. Still chasing my tail. I haven't even got dressed today.
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.
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.
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.
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.
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.
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.
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.
"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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?....
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?....
...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
I just can't cope with the NHS
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.
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.
22 October
An extra challenge has made things a bit unmanageable for me today. Working really hard to keep up.
An extra challenge has made things a bit unmanageable for me today. Working really hard to keep up.
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.
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.
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.
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.
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.
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.
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.
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).
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).
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.
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.
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).
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).
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.
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.
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.
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.
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).
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?
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.
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.
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.
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.
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.
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.
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.
7 November
It was good to talk with my therapist today. Discussed my concerns around the GP letter from a few days ago. It stirs up numerous different issues going back over decades so I have a lot to deal with.
It was good to talk with my therapist today. Discussed my concerns around the GP letter from a few days ago. It stirs up numerous different issues going back over decades so I have a lot to deal with.
8 November
I need to walk into town. I can't remember the last time. I'm pleased that I feel I can attempt it now, but keep thinking about how long it's been and that is disturbing. I can't process the reason for walking today either.
I need to walk into town. I can't remember the last time. I'm pleased that I feel I can attempt it now, but keep thinking about how long it's been and that is disturbing. I can't process the reason for walking today either.
9 November
Had a very helpful call today. Grateful for the support. Also overwhelmingly tired and a bit chaotic. Looking forward to dinner with friends.
Had a very helpful call today. Grateful for the support. Also overwhelmingly tired and a bit chaotic. Looking forward to dinner with friends.
10 November
I nearly forgot I had a call earlier and yesterday missed an appointment completely. So tired (even by my standards). Will be starting ADHD meds again (I think) so I hope it won't be more than I can manage.
I nearly forgot I had a call earlier and yesterday missed an appointment completely. So tired (even by my standards). Will be starting ADHD meds again (I think) so I hope it won't be more than I can manage.
12 November
Missed doing an update yesterday. Been getting increasingly stressed with trying to find ways to cope more effectively. Talked it through and feel a little better but aware I've often tricked myself like that before.
Trying to remember that I've started a couple of new conversations that I hope will be good for me.
Missed doing an update yesterday. Been getting increasingly stressed with trying to find ways to cope more effectively. Talked it through and feel a little better but aware I've often tricked myself like that before.
Trying to remember that I've started a couple of new conversations that I hope will be good for me.
13 November
Feels like something big has happened with my mental health. It feels potentially helpful but also too big for me to manage. Hoping when I talk to my therapist I will get more clarity.
Feels like something big has happened with my mental health. It feels potentially helpful but also too big for me to manage. Hoping when I talk to my therapist I will get more clarity.
14 November
Started Elvanse today #ADHD.
Feeling quite good. I hope it's not just the novelty. Not sure if that's what happened with the Concerta, which didn't help for long. Novelty is a thing with ADHD, isn't it? Would that mean meds aren't what I need?
Yesterday I was feeling fragile because a mental wound had opened up. Today I feel like it means healing can begin now I've identified where the damage is. At least I know where to stick a few plasters while I work out what to do.
15 November
Day 2 of Elvanse. Still going well. Coped with something I was afraid I couldn't manage. Also made a phone call that had been too difficult for several days. Pleased.
Day 2 of Elvanse. Still going well. Coped with something I was afraid I couldn't manage. Also made a phone call that had been too difficult for several days. Pleased.
16 November
Day 3 of Elvanse. Good day. With help I completed one big task I'd been stuck on for months. Started to work on the next task, which is bigger, tougher and has waited even longer. All very promising. Hoping I can keep on track.
Day 3 of Elvanse. Good day. With help I completed one big task I'd been stuck on for months. Started to work on the next task, which is bigger, tougher and has waited even longer. All very promising. Hoping I can keep on track.
17 November
More important stuff tackled today. In a hurry now though so can't go into more detail.
More important stuff tackled today. In a hurry now though so can't go into more detail.
18 November
Doing fairly well. Had a feeling I'd made a big step forward and then I went very foggy. So possibly there's something good happening and I've temporarily buried it. I am hopeful I can pick it up again soon.
Doing fairly well. Had a feeling I'd made a big step forward and then I went very foggy. So possibly there's something good happening and I've temporarily buried it. I am hopeful I can pick it up again soon.
18 November / 2
It looks like my toots for the past week or more have been invisible because I'd replied to myself and didn't know they wouldn't be public.
Well that's really embarrassing, but as novice errors go, I'm relieved it wasn't something that caused a problem for anybody else.
It looks like my toots for the past week or more have been invisible because I'd replied to myself and didn't know they wouldn't be public.
Well that's really embarrassing, but as novice errors go, I'm relieved it wasn't something that caused a problem for anybody else.
19 November
Another day that has been a tiny bit better than average. Feeling ok about a couple of things that had previously been worrying me. Got some important tasks done without as much anxiety as I'd expect.
Another day that has been a tiny bit better than average. Feeling ok about a couple of things that had previously been worrying me. Got some important tasks done without as much anxiety as I'd expect.
20 November
One week of Elvanse today. I've had a consistently better week than before. Recognising where I'm making some good decisions about coping with anxieties. I have a big social commitment tomorrow so might be challenging.
One week of Elvanse today. I've had a consistently better week than before. Recognising where I'm making some good decisions about coping with anxieties. I have a big social commitment tomorrow so might be challenging.
23 November
Missed updates for a couple of days. Things have been challenging and it wasn't possible to find the time. Nothing terrible has happened....I'm just not keeping up. Sorry if anyone was waiting for me.
Missed updates for a couple of days. Things have been challenging and it wasn't possible to find the time. Nothing terrible has happened....I'm just not keeping up. Sorry if anyone was waiting for me.
24 November
Still not recovered from a few hard days. More socialising coming up tomorrow. When I'm putting things in my diary, if it feels like it might be too much, I ignore it because not doing stuff seems unacceptable.
Still not recovered from a few hard days. More socialising coming up tomorrow. When I'm putting things in my diary, if it feels like it might be too much, I ignore it because not doing stuff seems unacceptable.
25 November
Gradually moving from @mastodon.online to @neurodifferent.me done as much as I can for now.
I've been quite low. It doesn't help that I got a very inadequate response to my MP letter. I knew it was pointless. Why did I get talked into it?
Gradually moving from @mastodon.online to @neurodifferent.me done as much as I can for now.
I've been quite low. It doesn't help that I got a very inadequate response to my MP letter. I knew it was pointless. Why did I get talked into it?
28 November
Not happy that I'm so behind with my updates. Spending time with friends is hard. They asked if it was too much pressure and I answered that I must still do it, because my connection with people is so limited that if I didn't, I would feel I'm not quite human.
Not happy that I'm so behind with my updates. Spending time with friends is hard. They asked if it was too much pressure and I answered that I must still do it, because my connection with people is so limited that if I didn't, I would feel I'm not quite human.
29 November
Anyone else ever have the feeling for about 10 minutes that things might be going well, only to have it all come crashing down around you? That's my day.
Anyone else ever have the feeling for about 10 minutes that things might be going well, only to have it all come crashing down around you? That's my day.
30 November
Good day but now horrendously tired.
Good day but now horrendously tired.
Anna Nicholson@autoperipatetikos Always good to have the occasional good day! 💜
@transponderings thank you, yes it is. The Elvanse seems to suit me better than the Concerta so far and it's so nice to finally find something that makes a proper difference in my wellbeing.
Hope things are ok with you 😘
Hope things are ok with you 😘
@autoperipatetikos Things going well for me in general (though ADHD meds aren’t part of that, unfortunately) 😊
@transponderings Hi Anna, hope you're still doing OK. I have been ignoring anything that seemed too difficult with Mastodon, but apparently I must change servers. Is neurodifferent.me OK? I'm afraid I'm so overwhelmed I need to be told. I can't make sense of the info that's out there. Hoping you don't mind helping me a bit, but if it's too much please don't feel pressured xx