Mary Starbuck27 January
How's your Tuesday? Are you managing OK with whatever the weather is doing? I've cancelled plans I had for going out to meet someone a short distance away.
Yesterday my shrinking cognitive abilities hit me. I've not been having the things I want to discuss going round in my head, so I don't message the things, so I'm not maintaining the same level of contact and community.
A few years ago I was still doing plenty of messaging, so the dip in face to face communication didn't seem problematic. Now I'm not so sure.
I think the time has come that I am honest with myself about not being able to have all the conversations that feel useful. This sounds dangerously like I will start feeling there's no point.
So it's been suggested that I try to restore my physical fitness by going for some more walks. This is massively confusing. I have spent 30 or so years trying to understand why I find it so hard to exercise. I think the biggest difficulty for me is my nervous system stopping me feeling safe.
I would love to feel healthier and stronger, but mentally it has been so difficult to understand my body properly. When I was diagnosed with CFS I was told to get enough rest, but that was far too complex for me without support which takes account of autism and ADHD. I have just become increasingly confused. I don't even recognise when I've got PEM (I suspect it might be most of the time). I don't know how to know what my baseline is.
I'm not going for a walk today because of the weather, but it remains to be seen if I can do it often enough to improve anything.
28 January
How are you doing today?
I've just about made it through the day but it's been difficult to keep pretending I can do this much. I visited my aunt and I think I was helpful but now I'm so tired I can't think of anything else to sat.
I'll be back to try again tomorrow.
How are you doing today?
I've just about made it through the day but it's been difficult to keep pretending I can do this much. I visited my aunt and I think I was helpful but now I'm so tired I can't think of anything else to sat.
I'll be back to try again tomorrow.
29 January
Hope your Thursday has been OK.
We had an unplanned trip to drop something off for servicing. I managed to get some shopping too. After that I've been working on a long email for my next call with the psychologist. It refers to difficult subjects, so it's not been fun, but feels like it has been helpful.
Now it's late and I've not had time for anything else.
Hope your Thursday has been OK.
We had an unplanned trip to drop something off for servicing. I managed to get some shopping too. After that I've been working on a long email for my next call with the psychologist. It refers to difficult subjects, so it's not been fun, but feels like it has been helpful.
Now it's late and I've not had time for anything else.
30 January
Happy Friday everyone. Have you got something to look forward to this weekend?
I've been working on the email from yesterday. It got a bit difficult but I sent it off anyway. This morning I started on some decluttering, which had not been in my plan for any specific time, but other people have stuff going on so I had to act quickly. I've not got very far (mainly just moving things out of problem areas to another room) but I'm pleased that I was ready to face emotional work. Pretty quickly I ground to a halt with my brain almost seizing up. I am motivated to do some more, but I'll have to be more careful.
Happy Friday everyone. Have you got something to look forward to this weekend?
I've been working on the email from yesterday. It got a bit difficult but I sent it off anyway. This morning I started on some decluttering, which had not been in my plan for any specific time, but other people have stuff going on so I had to act quickly. I've not got very far (mainly just moving things out of problem areas to another room) but I'm pleased that I was ready to face emotional work. Pretty quickly I ground to a halt with my brain almost seizing up. I am motivated to do some more, but I'll have to be more careful.
31 January
Have you been having a good Saturday?
Mine has been ok-ish, but I seem to have worked really hard just to keep standing still. It has been quite bright so I saw a little sun. I'm not going to write more, because I would run out of spoons before I could put anything into proper sentences.
Have you been having a good Saturday?
Mine has been ok-ish, but I seem to have worked really hard just to keep standing still. It has been quite bright so I saw a little sun. I'm not going to write more, because I would run out of spoons before I could put anything into proper sentences.
2 February
Happy Monday, even if it is drizzly and grey.
I am doing well to get here while it's still morning AND I've been for a little walk in the damp. Said hello to a very vocal robin and lots of dogs.
Yesterday went very well. The conversation did not seem too awkward considering how long it's been since last time. I am now feeling like I've picked up some germs, so wish me luck with escaping.
I have my video call with the psychologist after lunch. That's enough. I must not pile anything more onto today's plate.
Happy Monday, even if it is drizzly and grey.
I am doing well to get here while it's still morning AND I've been for a little walk in the damp. Said hello to a very vocal robin and lots of dogs.
Yesterday went very well. The conversation did not seem too awkward considering how long it's been since last time. I am now feeling like I've picked up some germs, so wish me luck with escaping.
I have my video call with the psychologist after lunch. That's enough. I must not pile anything more onto today's plate.
Yesterday's toot is not here. Don't know why. Better late than never, I suppose:
Hello everyone, happy February!
This was meant to be a good morning greeting, but I see that has passed me by 😞. I have to go out. I'm really not in the mood, but that has a lot to do with being out of the habit. I am going to see someone I used to work with in the 90s. It's taken me just over a year to actually arrange this, after many years of waiting for the old me to come back to life and kick into action. Part of me is really confused about why I can't organise things that used to be quite easy, but I have to keep reminding myself of the many reasons 😬
Hello everyone, happy February!
This was meant to be a good morning greeting, but I see that has passed me by 😞. I have to go out. I'm really not in the mood, but that has a lot to do with being out of the habit. I am going to see someone I used to work with in the 90s. It's taken me just over a year to actually arrange this, after many years of waiting for the old me to come back to life and kick into action. Part of me is really confused about why I can't organise things that used to be quite easy, but I have to keep reminding myself of the many reasons 😬
3 February
I've over done things today. Hopefully I will be ok to catch up tomorrow.
I've over done things today. Hopefully I will be ok to catch up tomorrow.
4 February
Hello, how's your Wednesday going?
Yesterday I was trying to process a mixture of my own thinking and the ideas of the psychologist. It was a lot. We explored how we might begin to restore some balance to my nervous system (including treating a bit of trauma).
I am going to try some very, very small bits of daily activity which, before, I would have said were too small to be worth it. I think I feel like he has understood me well enough and early enough in our sessions that I can trust him and myself with this.
I raised my concerns about not knowing how to define my baseline or recognise PEM.
He introduced me to General Adaptation Syndrome and I'm curious about why I've not heard of it before. Does anybody else have any experience or thoughts?
Hello, how's your Wednesday going?
Yesterday I was trying to process a mixture of my own thinking and the ideas of the psychologist. It was a lot. We explored how we might begin to restore some balance to my nervous system (including treating a bit of trauma).
I am going to try some very, very small bits of daily activity which, before, I would have said were too small to be worth it. I think I feel like he has understood me well enough and early enough in our sessions that I can trust him and myself with this.
I raised my concerns about not knowing how to define my baseline or recognise PEM.
He introduced me to General Adaptation Syndrome and I'm curious about why I've not heard of it before. Does anybody else have any experience or thoughts?
5 February
Happy Thursday, if you can see past the rain.
Yesterday I went for some shopping on foot as the sun was out. When I came back I noticed in the garden that I could see the yellow of crocus flowers starting to show.
So beautifully springy!
I've changed the bedding and done a load of laundry this morning, which is a relief as I felt close to pretending to forget.
Looking forward to my daily 10 minutes of creativity that I hope can become a habit. The plan is that I can do longer if I want to. Yesterday I felt (maybe) that doing a bit longer stopped me from remaining focused on less appealing tasks. I shall try to do the more mundane task first, when possible from now on.
To get myself started with the creativity, I've been doing sticker mosaics in a book. I have chosen "myths and legends" and my first one was a unicorn. I am enjoying the colours very much, and according to the book, getting mindfully meditative in the process.
Apart from that I have been struggling and I find that I don't have the spoons for helpful communications to get me through it. This suggests to me that my functioning has reduced again. This is really painful and I am so angry with the people who insist I'm fine.
Happy Thursday, if you can see past the rain.
Yesterday I went for some shopping on foot as the sun was out. When I came back I noticed in the garden that I could see the yellow of crocus flowers starting to show.
So beautifully springy!
I've changed the bedding and done a load of laundry this morning, which is a relief as I felt close to pretending to forget.
Looking forward to my daily 10 minutes of creativity that I hope can become a habit. The plan is that I can do longer if I want to. Yesterday I felt (maybe) that doing a bit longer stopped me from remaining focused on less appealing tasks. I shall try to do the more mundane task first, when possible from now on.
To get myself started with the creativity, I've been doing sticker mosaics in a book. I have chosen "myths and legends" and my first one was a unicorn. I am enjoying the colours very much, and according to the book, getting mindfully meditative in the process.
Apart from that I have been struggling and I find that I don't have the spoons for helpful communications to get me through it. This suggests to me that my functioning has reduced again. This is really painful and I am so angry with the people who insist I'm fine.
6 February
Have a lovely Friday everybody (if you can ignore all the rubbish stuff).
I am attempting to restrict how much I'm getting overwhelmed by on here (even though it feels like it was very little in the first place).
I hope it's not too noticeable and you don't feel like I've gone quiet or I'm ignoring you. I can only cut down on the number of people I have on my list (filtering is more than I can cope with). I might not get it right first time, but I am trying really hard.
Have a lovely Friday everybody (if you can ignore all the rubbish stuff).
I am attempting to restrict how much I'm getting overwhelmed by on here (even though it feels like it was very little in the first place).
I hope it's not too noticeable and you don't feel like I've gone quiet or I'm ignoring you. I can only cut down on the number of people I have on my list (filtering is more than I can cope with). I might not get it right first time, but I am trying really hard.
7 February
Ah. I see I've gone straight through morning again without realising. I'll just say hello and wish you a good weekend.
I've been doing my CPAP cleaning and some laundry which has kept me busy. I played some bits of What's the Story, Ashley Storrie on BBC Sounds. Her thoughts about the death of her mum seem to resonate, but that's confusing, because there's not much similarity. Maybe it's just her autistic humour. I've been watching her in Dinosaur too. Anybody else caught either of these series?
Ah. I see I've gone straight through morning again without realising. I'll just say hello and wish you a good weekend.
I've been doing my CPAP cleaning and some laundry which has kept me busy. I played some bits of What's the Story, Ashley Storrie on BBC Sounds. Her thoughts about the death of her mum seem to resonate, but that's confusing, because there's not much similarity. Maybe it's just her autistic humour. I've been watching her in Dinosaur too. Anybody else caught either of these series?
8 February
Morning, How's your weekend been going?
I'm quite excited that I've got to this update while it's still morning (just). I've done some personal care tasks, but not much else so far. Hoping to go for a little walk since it's not quite as grey as it has been. Then I will try to do my daily tasks. Feeling more ok about this than I expected, which is really encouraging.
Morning, How's your weekend been going?
I'm quite excited that I've got to this update while it's still morning (just). I've done some personal care tasks, but not much else so far. Hoping to go for a little walk since it's not quite as grey as it has been. Then I will try to do my daily tasks. Feeling more ok about this than I expected, which is really encouraging.
9 February
Hello all, is your Monday being kind to you?
It's my cleaning person's day, but their start time got put back, so I've totally lost the morning again. I have done some messaging, which I feel positive about. It will be good to have my daily tasks I can do while the cleaning's being done.
My walk yesterday turned out not so relaxing as I hoped, because there was some flooding and I have learned that I have no skills at keeping dry. I was wearing proper walking boots, but apparently I was kicking too much water up with my feet. I've never done this before and I was rather anxious, so I was rushing to keep up with others. My instinct is to not splash, so I felt I needed to not lift my feet and then splash back down on the water. In keeping them under the surface I have only lifted the water more.
I got grumpy. I've always thought it was a stupid idea to go straight through rather than around. This instinct now has experience to back it up, so I won't do it again unless really needed.
Hello all, is your Monday being kind to you?
It's my cleaning person's day, but their start time got put back, so I've totally lost the morning again. I have done some messaging, which I feel positive about. It will be good to have my daily tasks I can do while the cleaning's being done.
My walk yesterday turned out not so relaxing as I hoped, because there was some flooding and I have learned that I have no skills at keeping dry. I was wearing proper walking boots, but apparently I was kicking too much water up with my feet. I've never done this before and I was rather anxious, so I was rushing to keep up with others. My instinct is to not splash, so I felt I needed to not lift my feet and then splash back down on the water. In keeping them under the surface I have only lifted the water more.
I got grumpy. I've always thought it was a stupid idea to go straight through rather than around. This instinct now has experience to back it up, so I won't do it again unless really needed.
10 February
Hello, how's it going with you today?
I've completed a birthday card for my friend that I started as my creative daily activity. I posted it this morning and got sucked into a long and drawn out thing while we were in town. Then I had a counselling call which was quite positive. Now I'm rather overwhelmed and more tired than I expected. I do wish I hadn't planned to go out tomorrow. I can't let people down, so I'll have to just get on with it.
Hello, how's it going with you today?
I've completed a birthday card for my friend that I started as my creative daily activity. I posted it this morning and got sucked into a long and drawn out thing while we were in town. Then I had a counselling call which was quite positive. Now I'm rather overwhelmed and more tired than I expected. I do wish I hadn't planned to go out tomorrow. I can't let people down, so I'll have to just get on with it.
11 February
How's everybody doing this Wednesday?
I did something today that I really wasn't sure I could manage. It was OK, but I did have to push myself and now I'm struggling. There's a part of this activity that I dread so much, I wonder why I keep putting myself through it. Today it occurred to me that I do it because I want to, and that is a good enough reason. It's a simple idea, but it took me so long to understand.
How's everybody doing this Wednesday?
I did something today that I really wasn't sure I could manage. It was OK, but I did have to push myself and now I'm struggling. There's a part of this activity that I dread so much, I wonder why I keep putting myself through it. Today it occurred to me that I do it because I want to, and that is a good enough reason. It's a simple idea, but it took me so long to understand.
12 February
Happy Thursday lovely people!
I've been for a haircut. I've had the usual anguish over desperately wanting to have something done that I absolutely love, whilst knowing that I am always going to hate the way I look. There was added anguish about me having a diary fail when I should have gone a couple of weeks ago, then having a nightmare about it, then that causing an argument.
Hair appointment was followed by some very delicious chickpea fries. But next came the thing I've been dreading for years....a new phone 😬 I haven't tried using it yet, but I'm already annoyed that I can't use plug in wired earbuds for my video calls. So I have to spend more money on something I don't want because they don't give that information out before setting it up and I can't go back now.
Apologies in advance for me complaining about other things I hate about it for a couple of weeks.
Happy Thursday lovely people!
I've been for a haircut. I've had the usual anguish over desperately wanting to have something done that I absolutely love, whilst knowing that I am always going to hate the way I look. There was added anguish about me having a diary fail when I should have gone a couple of weeks ago, then having a nightmare about it, then that causing an argument.
Hair appointment was followed by some very delicious chickpea fries. But next came the thing I've been dreading for years....a new phone 😬 I haven't tried using it yet, but I'm already annoyed that I can't use plug in wired earbuds for my video calls. So I have to spend more money on something I don't want because they don't give that information out before setting it up and I can't go back now.
Apologies in advance for me complaining about other things I hate about it for a couple of weeks.
13 February
I do not like having a new phone.
I hope everybody is managing better than I am today.
I do not like having a new phone.
I hope everybody is managing better than I am today.
14 February
Hello friends, I hope you're having a good day. It looks like there is some brightness for more of us in the weather. Hooray!
Today is important to me. Not for the cards and flowers nonsense, but birthdays and remembering someone who has left us.
I'm still struggling with the transition to my new phone so will probably not be here very much. I am massively regretting going ahead with it so close to needing to pack for a trip. It is hard not to get carried along with other people when I depend upon them for so much, and I'm afraid of causing arguments.
Hello friends, I hope you're having a good day. It looks like there is some brightness for more of us in the weather. Hooray!
Today is important to me. Not for the cards and flowers nonsense, but birthdays and remembering someone who has left us.
I'm still struggling with the transition to my new phone so will probably not be here very much. I am massively regretting going ahead with it so close to needing to pack for a trip. It is hard not to get carried along with other people when I depend upon them for so much, and I'm afraid of causing arguments.
15 February
Hello, how's your weekend going? No snow here but it's very damp and cold.
I am trying to get ready for our trip, also my daily tasks and still working on getting everything set up with my new phone. My concentration is especially poor today and that's a real pain.
Hello, how's your weekend going? No snow here but it's very damp and cold.
I am trying to get ready for our trip, also my daily tasks and still working on getting everything set up with my new phone. My concentration is especially poor today and that's a real pain.
16 February
Hi, how are you doing this rainy Monday?
We've been on a short walk to get some groceries (before the rain started) and I've done more laundry. Part way through my daily tasks. I have a video call with the psychologist at 2pm. I've skipped my autistic adults meeting for this month because I'm very foggy and fatigued. It would have been a struggle to get to my 2pm after that.
Yesterday I started to go through all my Mastodon bookmarks. That was a challenge to put it mildly. I've copied many links which I hope I can actually use or consume more comfortably in this format. I need to categorise and group to make sense of what I have. For some reason, explaining this is making me feel emotional. I think it's because I struggle so much with managing quantities of reading, and processing information. It is another indicator that my capacity is shrinking.
Hi, how are you doing this rainy Monday?
We've been on a short walk to get some groceries (before the rain started) and I've done more laundry. Part way through my daily tasks. I have a video call with the psychologist at 2pm. I've skipped my autistic adults meeting for this month because I'm very foggy and fatigued. It would have been a struggle to get to my 2pm after that.
Yesterday I started to go through all my Mastodon bookmarks. That was a challenge to put it mildly. I've copied many links which I hope I can actually use or consume more comfortably in this format. I need to categorise and group to make sense of what I have. For some reason, explaining this is making me feel emotional. I think it's because I struggle so much with managing quantities of reading, and processing information. It is another indicator that my capacity is shrinking.
17 February
Morning everybody, happy pancake day (sounds fun, even if it doesn't work in real life).
I am feeling like I just can't today. It would be so lovely to chat but it's not happening (like something has broken).
Morning everybody, happy pancake day (sounds fun, even if it doesn't work in real life).
I am feeling like I just can't today. It would be so lovely to chat but it's not happening (like something has broken).
18 February
Hello, are you having an ok day?
Late last night (just before bed) we suddenly decided to make pancakes. They were so good. I had had a good meeting with my outreach worker, which I'm so grateful for.
Today I'm getting ready for a journey. It's for a special occasion (thankfully no peopling required) and I'm glad I chose to do it, but at the same time, I wish it didn't involve so many spoons.
Hello, are you having an ok day?
Late last night (just before bed) we suddenly decided to make pancakes. They were so good. I had had a good meeting with my outreach worker, which I'm so grateful for.
Today I'm getting ready for a journey. It's for a special occasion (thankfully no peopling required) and I'm glad I chose to do it, but at the same time, I wish it didn't involve so many spoons.
19 February
Hello everybody and happy Thursday. Are you doing ok?
I feel rather guilty about being on this trip. It seems very extravagant in many ways. When I first had the idea, I didn't think it through properly before it got booked. I don't do things like this without a reason, and the reason this time made me a bit impulsive.
I will be doing a special train trip for a very special occasion. I have been on a plane (which was not my first choice) and I got to see plenty of blue sky and sun while I was up there. It's still clear now I'm on the ground but there's also lots of snow. I'm glad to tell anyone who was doubting, that the sun is still there!
I'm feeling quite sensitive that it's been shared on Facebook that I'm away. I get terribly self conscious and although I know this always happens, I was not prepared today. Having to scramble out of the house extra early because of traffic delays did not help with the last minute getting I had planned. It's all been quite stressful. But we're here now. Hopefully more to follow when I can.
Hello everybody and happy Thursday. Are you doing ok?
I feel rather guilty about being on this trip. It seems very extravagant in many ways. When I first had the idea, I didn't think it through properly before it got booked. I don't do things like this without a reason, and the reason this time made me a bit impulsive.
I will be doing a special train trip for a very special occasion. I have been on a plane (which was not my first choice) and I got to see plenty of blue sky and sun while I was up there. It's still clear now I'm on the ground but there's also lots of snow. I'm glad to tell anyone who was doubting, that the sun is still there!
I'm feeling quite sensitive that it's been shared on Facebook that I'm away. I get terribly self conscious and although I know this always happens, I was not prepared today. Having to scramble out of the house extra early because of traffic delays did not help with the last minute getting I had planned. It's all been quite stressful. But we're here now. Hopefully more to follow when I can.
20 February
How are you doing today?
I think the WiFi or Mastodon is not working properly here. I've tried responding to toots and got frozen. Sorry. I've not been deliberately quiet.
Tomorrow is kind of a big day. I haven't really got everything ready that and that makes me sad. I know that it wasn't realistic for me to fix certain things but sometimes I surprise myself and I wanted it to be one of those times.
Hopefully I'll have some good pictures I can share with you soon.
How are you doing today?
I think the WiFi or Mastodon is not working properly here. I've tried responding to toots and got frozen. Sorry. I've not been deliberately quiet.
Tomorrow is kind of a big day. I haven't really got everything ready that and that makes me sad. I know that it wasn't realistic for me to fix certain things but sometimes I surprise myself and I wanted it to be one of those times.
Hopefully I'll have some good pictures I can share with you soon.
21 February
Happy Saturday everybody!
It's my dad's 100th birthday. He's not around any more so we're doing a special train ride in his memory. And it is. Very special.
From Bergen to Oslo including the highest railway station in northern Europe (Finse). It is spectacular. My photos are the usual very poor standard. I can't over emphasise how stunning the views are. Right now it's completely white in each corner of every window!
Happy Saturday everybody!
It's my dad's 100th birthday. He's not around any more so we're doing a special train ride in his memory. And it is. Very special.
From Bergen to Oslo including the highest railway station in northern Europe (Finse). It is spectacular. My photos are the usual very poor standard. I can't over emphasise how stunning the views are. Right now it's completely white in each corner of every window!
22 February
Have you been having an ok weekend?
We went to the Munch museum. It is very big and I couldn't manage the whole thing.
The Scream is not on display in all forms apart from (I think?) a woodblock.
I especially enjoyed the "Almost Unreal" trienniale and I've got a few snapshots to share (I've put as much as I can into the alt text).
"Almost Unreal refers to a current moment in which the division between the real and the unreal is becoming increasingly uncertain. Recent technological developments enable the creation of simulated, augmented and enhanced realities, yet their availability comes at a
cost to the climate, interpersonal relations, and human imagination"
A few pieces from Munch.
Apologies for the quality of the Scream....it was too much pressure with loads of people crowding round.
Apologies for the quality of the Scream....it was too much pressure with loads of people crowding round.
23 February
How are things with you today?
We did another museum (no pictures this time). Enjoyed using the metro and trams and buses on the Ruter app. Very public transport friendly. There was more snow over night and it looks very pretty. It wasn't too cold surprisingly. We walked by the palace, national and city parliament and national theatre. All looking beautiful. Had a shower and now having a little drink before a snack. I am utterly worn out again! Going home tomorrow. I've only just got used to being here.
How are things with you today?
We did another museum (no pictures this time). Enjoyed using the metro and trams and buses on the Ruter app. Very public transport friendly. There was more snow over night and it looks very pretty. It wasn't too cold surprisingly. We walked by the palace, national and city parliament and national theatre. All looking beautiful. Had a shower and now having a little drink before a snack. I am utterly worn out again! Going home tomorrow. I've only just got used to being here.
24 February
Hope people here are OK.
We're nearly home. I've seriously run out of steam, so I'll have to catch up a bit more soon. Journey was pretty good, but I'm very achey and terribly tired.
Hope people here are OK.
We're nearly home. I've seriously run out of steam, so I'll have to catch up a bit more soon. Journey was pretty good, but I'm very achey and terribly tired.
25 February
Hello, are you having a good Wednesday? Is it sunny where you are? It is feeling very spring like here. I've hung some washing out and it's wonderful to see the bumble bees buzzing around some daphnia which smells beautiful and also flowering tete-a-tete, periwinkle, crocus, primroses and hyacinths.
Inside, however, my return from the snow has ended in a bumpy landing. I've not had the usual level of feeling like I've come home, plus all the aches and pains from while I was walking or travelling are lingering. Getting unpacked and doing the laundry feels like a big challenge.
Hello, are you having a good Wednesday? Is it sunny where you are? It is feeling very spring like here. I've hung some washing out and it's wonderful to see the bumble bees buzzing around some daphnia which smells beautiful and also flowering tete-a-tete, periwinkle, crocus, primroses and hyacinths.
Inside, however, my return from the snow has ended in a bumpy landing. I've not had the usual level of feeling like I've come home, plus all the aches and pains from while I was walking or travelling are lingering. Getting unpacked and doing the laundry feels like a big challenge.
26 February
Happy Thursday. How are you doing?
I had an early start before the cleaning that usually is on Monday but had to be scheduled before their other jobs. I did some washing and a couple of small tasks.
I'm struggling with something that I can't properly identify. I really want to understand it, share and work on it, but if I don't know what it really is, how do I do that?
It's nothing that wasn't present before. The longer I wrestle with complexities of audhd life and several other health problems, the harder it is for me to process what's happening in my head.
Happy Thursday. How are you doing?
I had an early start before the cleaning that usually is on Monday but had to be scheduled before their other jobs. I did some washing and a couple of small tasks.
I'm struggling with something that I can't properly identify. I really want to understand it, share and work on it, but if I don't know what it really is, how do I do that?
It's nothing that wasn't present before. The longer I wrestle with complexities of audhd life and several other health problems, the harder it is for me to process what's happening in my head.
1 March
How's March going for you so far?
Didn't get round to posting yesterday. Started the day still feeling low. We've got some damage causing a leaking pipe that's got to be fixed and a damaged flat tyre on the car. I went on to spend some time crafting, which was really good. Also caught up with my regular favourite podcast: Neurotypicals Don't Juggle Chainsaws. Then the #Railnatter episode on Lilian Lawrence and other LGBTQIA+ experiences (thanks @transponderings for that link).
The first podcast was on decluttering. Later on I ended up making a purchase of something I regretted getting rid of about 15 years ago 🙄 🤣
This morning I've changed the bedding. Taking a little break now.
How's March going for you so far?
Didn't get round to posting yesterday. Started the day still feeling low. We've got some damage causing a leaking pipe that's got to be fixed and a damaged flat tyre on the car. I went on to spend some time crafting, which was really good. Also caught up with my regular favourite podcast: Neurotypicals Don't Juggle Chainsaws. Then the #Railnatter episode on Lilian Lawrence and other LGBTQIA+ experiences (thanks @transponderings for that link).
The first podcast was on decluttering. Later on I ended up making a purchase of something I regretted getting rid of about 15 years ago 🙄 🤣
This morning I've changed the bedding. Taking a little break now.
2 March
Hello! Greetings from a beautiful springy day!
I've done some washing, walked to the shop for groceries and had a call with the psychologist. I left it a bit late to hang the washing out before my call, but couldn't let the sunshine get away unused.
I'd been a bit worried about my call (felt unsure about the last one), but it was really helpful. Working on medical trauma. He said that he'd written a chapter on a book about cPTSD and chosen the subject of being disbelieved. This comes from working with EDS people with experiences of not being treated fairly. Also asked me if some of my recent pain is possibly as a result of not being heard. His experience is that with EDS, pain (and fatigue) can become more intense to alert the brain to a message which has been missed.
Edit to remove a mistake. Sorry!
3 March
I hope you're all having a good day.
I had a nasty dream about one of my friends doing a terrible crime and I felt like I should have stopped them so I must be a bad person too.
Got a load of washing outside to dry again and collected my repeat meds.
Spent the rest of today with craft stuff. There's not a massive amount to show for it yet, but I have been catching up on getting my card making materials organised. I've been looking at some old items that I'd got into a habit of just ignoring. Revisiting why I liked it in the first place and refreshed the interest. Also allowed myself to put some bits into recycling as I went along rather than hanging on to them and thinking I can achieve zero waste. Quite pleased with myself 😍
I hope you're all having a good day.
I had a nasty dream about one of my friends doing a terrible crime and I felt like I should have stopped them so I must be a bad person too.
Got a load of washing outside to dry again and collected my repeat meds.
Spent the rest of today with craft stuff. There's not a massive amount to show for it yet, but I have been catching up on getting my card making materials organised. I've been looking at some old items that I'd got into a habit of just ignoring. Revisiting why I liked it in the first place and refreshed the interest. Also allowed myself to put some bits into recycling as I went along rather than hanging on to them and thinking I can achieve zero waste. Quite pleased with myself 😍
4 March
Morning! Hope your Wednesday is going well.
I've got some laundry on and I've started on my daily tidying and creativity. Not such a nice day as yesterday but I'll try not to notice that. I probably won't be here too much until this evening.
Morning! Hope your Wednesday is going well.
I've got some laundry on and I've started on my daily tidying and creativity. Not such a nice day as yesterday but I'll try not to notice that. I probably won't be here too much until this evening.
5 March
Happy Thursday everyone, how's it going?
There is a bit more sun here today than yesterday, so I'm hoping I won't feel as cold (I thought I was sick in the afternoon and slept for a big chunk of the evening). It might be that I felt I was not doing so well with my craft project and my body decided to have a sulk.
I was pleased about catching up with a task I'd been behind with though.
Also very glad I listened to This is the Door: Notes From a Body in Pain by Darcey Steinke on Radio 4. I thought it was a very interesting exploration of chronic pain.
Happy Thursday everyone, how's it going?
There is a bit more sun here today than yesterday, so I'm hoping I won't feel as cold (I thought I was sick in the afternoon and slept for a big chunk of the evening). It might be that I felt I was not doing so well with my craft project and my body decided to have a sulk.
I was pleased about catching up with a task I'd been behind with though.
Also very glad I listened to This is the Door: Notes From a Body in Pain by Darcey Steinke on Radio 4. I thought it was a very interesting exploration of chronic pain.
6 March
How is it going with you this Friday?
It's grey and dull in my little corner. And even more grey in my head.
I've started on my daily tasks (as formulated with the psychologist). I've done some other small jobs that are helpful. Later we are going out with our friends and staying over night. I am not loving the idea of getting ready and leaving my house.
Yesterday I managed to do well with my card making. I've got the start of a structure for ideas which I can use regularly. I hope. The second card took me maybe 2 hours (much quicker than the first). This shows me that spending time sorting all my materials out carefully is useful and not as pointless as I was afraid it might be.
How is it going with you this Friday?
It's grey and dull in my little corner. And even more grey in my head.
I've started on my daily tasks (as formulated with the psychologist). I've done some other small jobs that are helpful. Later we are going out with our friends and staying over night. I am not loving the idea of getting ready and leaving my house.
Yesterday I managed to do well with my card making. I've got the start of a structure for ideas which I can use regularly. I hope. The second card took me maybe 2 hours (much quicker than the first). This shows me that spending time sorting all my materials out carefully is useful and not as pointless as I was afraid it might be.
7 March
Hope you're having a good weekend.
We had a nice time with our friends last night. Staying away from home has just kind of eaten up my energy and I'm really tired, so I will keep this short and catch up properly tomorrow. Trying to get to bed early to allow for the clocks going forward.
Hope you're having a good weekend.
We had a nice time with our friends last night. Staying away from home has just kind of eaten up my energy and I'm really tired, so I will keep this short and catch up properly tomorrow. Trying to get to bed early to allow for the clocks going forward.
8 March
Long: audhd and cognitive decline
So I got confused by the posts on the clocks going forward yesterday after already being told firmly by someone close to me that it was definitely today.
This is the second time this year that I've been caught out by the strong influence of people I care about drowning out my own sense of what I know is on the calendar.
I think there's an element of cognitive decline (I get overwhelmed just looking at the calendar) but also I'm tending to not challenge if I feel something is wrong for fear of causing anger. This sounds like a recipe for vulnerability and being taken advantage of.
I have raised my fear of cognitive decline to numerous doctors, but it doesn't seem evident to them, because of the way they check for it.
I have a feeling that my autistic masking and pattern following habits cover it up. They normally ask things based on numbers. I can often reference multiplication tables and I feel like I'm being tested as they did when I was at junior school.
I am just rigidly obeying the rules that were drilled into me, like when being coached to pass the 11+. I can still summon them up when under pressure.
But why can't they see that I have sunk lower and lower at the skills that really matter to me, such as functioning and warding off vulnerability?
Does anyone else know if it's is a thing for autistic masking and tendency to follow rules to disguise cognitive decline? Or is it more likely alexithymia stopping me from recognising that it's simply the effect of burnout, fatigue and trauma?
9 March
Hope your Monday is as acceptable as possible.
It's foggy here outside and in. There is a repair job being done which was much more disruptive and upsetting than I anticipated 😬 this is on top of the damage to our lovely new paintwork that was only completed in December. Also got a separate person coming to do something else, parcels being delivered and lots of things I'm behind with. Why is it always Monday?
Hope your Monday is as acceptable as possible.
It's foggy here outside and in. There is a repair job being done which was much more disruptive and upsetting than I anticipated 😬 this is on top of the damage to our lovely new paintwork that was only completed in December. Also got a separate person coming to do something else, parcels being delivered and lots of things I'm behind with. Why is it always Monday?
10 March
Hello, how's everyone getting on today?
My day has been long and tiring, but not all bad. I had a lovely lunch with a family member for their birthday. I need to just stop and be quiet now. I'll try to catch up tomorrow.
Hello, how's everyone getting on today?
My day has been long and tiring, but not all bad. I had a lovely lunch with a family member for their birthday. I need to just stop and be quiet now. I'll try to catch up tomorrow.
11 March
It's a nice day here. Sending you all sunny spring greetings.
I'm still a bit emotional from yesterday. It's hard to get my head round why I feel so much about something simple and almost routine. I delivered the cards I've been making, so that felt good.
In the last week or two I've been feeling extra upset over things that don't normally cause that much stress. Yesterday this spilled over so that I upset someone else, too.
Anxiously tiptoeing through the rest of the week so as not to stir up any other trouble. The regular Monday stuff is being done today (postponed due to the leaking pipe) and that means more people in the house (sigh).
Husband is going away for a short break tomorrow and on Friday someone is dropping in to collect items we've been looking after for them. I've offered them lunch but I'm doubting whether I can actually manage it.
It's a nice day here. Sending you all sunny spring greetings.
I'm still a bit emotional from yesterday. It's hard to get my head round why I feel so much about something simple and almost routine. I delivered the cards I've been making, so that felt good.
In the last week or two I've been feeling extra upset over things that don't normally cause that much stress. Yesterday this spilled over so that I upset someone else, too.
Anxiously tiptoeing through the rest of the week so as not to stir up any other trouble. The regular Monday stuff is being done today (postponed due to the leaking pipe) and that means more people in the house (sigh).
Husband is going away for a short break tomorrow and on Friday someone is dropping in to collect items we've been looking after for them. I've offered them lunch but I'm doubting whether I can actually manage it.
12 March
Hello and happy Thursday! How are you doing?
My day is more crappy than happy. I'm trying to figure out what's going on.
I've often spoken about feeling confused in the past to counsellors. I've eased off from doing that, because it seems to lead to further confusion and grief at losing what I thought was understanding I shared with people in general.
It could be that the confusion is because of SDAM and being unable to make sense of the fragments of memory which I can't get into the right order to complete a useful picture.
When I get asked what I'm confused about, I've often replied that if I knew the answer then I wouldn't be confused. If I'm not careful, that makes people angry with me and then I get more confused. I'm feeling very isolated by this difference between me and the world. It's not a difference I can talk about because nobody knows what it is.
13 March
How are you doing? Hope you've got something nice happening this weekend.
My visitor has been and gone. I did a small lunch and I've survived. I enjoyed chatting a bit. It's been a lot for me. My stupid, confused and jumbled up brain can't cope when remains of the old me get stirred up and today's me seems like a miserable, pointless ghost.
14 March
Hope your Saturday is going well and it's sunny where you are.
I'm not having a bad day, but I have bad stuff going on in my head because of misunderstandings in the past. I know I can't fix any of it now, but that doesn't stop my subconscious giving me a beating for it in the morning as I wake up.
I hate it so much that these misunderstandings were due to being mislead (clearly not my fault) yet in real life there is nobody who can empathise with how overwhelmingly it has worn me down.
I'm sure I've repeated this in other words several times, but it keeps swirling round and feels new each time it comes back.
Hope your Saturday is going well and it's sunny where you are.
I'm not having a bad day, but I have bad stuff going on in my head because of misunderstandings in the past. I know I can't fix any of it now, but that doesn't stop my subconscious giving me a beating for it in the morning as I wake up.
I hate it so much that these misunderstandings were due to being mislead (clearly not my fault) yet in real life there is nobody who can empathise with how overwhelmingly it has worn me down.
I'm sure I've repeated this in other words several times, but it keeps swirling round and feels new each time it comes back.
15 March
Hello, how's your Sunday? It's a bit grey here now.
I have been filling in some questionnaires for tomorrow's psychologist call: Am I experiencing body boredom? (score 92/100) and Do I express Anger appropriately? (score 75/100). It's quite interesting and I hope it will be helpful, even if only as a prompt.
I'd not heard of body boredom before, but it's a name being used here for physical symptoms of lack of engagement and suppressed needs.
Hello, how's your Sunday? It's a bit grey here now.
I have been filling in some questionnaires for tomorrow's psychologist call: Am I experiencing body boredom? (score 92/100) and Do I express Anger appropriately? (score 75/100). It's quite interesting and I hope it will be helpful, even if only as a prompt.
I'd not heard of body boredom before, but it's a name being used here for physical symptoms of lack of engagement and suppressed needs.
16 March
Hello everyone, I've not been here much today. How are you doing?
I felt pretty low this morning and I just lurked. I had planned to go to my group but missed it again (second month in a row) because of my mood.
I had a call with the psychologist this afternoon. I was a bit concerned about not getting all the forms filled in that I'd been given, but in my answers there was enough to be going on with. It was very encouraging that he was interested in what I'd written.
It feels helpful that he's trying to unpick some of the mess and confusion with my alexithymia in the context of how "symptoms"* connect with causes.
* "symptoms" is not a good word but the only one my brain will come up with.
Hello everyone, I've not been here much today. How are you doing?
I felt pretty low this morning and I just lurked. I had planned to go to my group but missed it again (second month in a row) because of my mood.
I had a call with the psychologist this afternoon. I was a bit concerned about not getting all the forms filled in that I'd been given, but in my answers there was enough to be going on with. It was very encouraging that he was interested in what I'd written.
It feels helpful that he's trying to unpick some of the mess and confusion with my alexithymia in the context of how "symptoms"* connect with causes.
* "symptoms" is not a good word but the only one my brain will come up with.
17 March
Morning all, how're things with you?
I must work on my NHS communication passport thingy today (I think that's what it's called). I have been putting it off, well, completely dreading what it will stir up. On the bright side, I have had support and someone has already done most of the decision making part.
It does feel like a complete waste of time, because I don't think anyone will even notice it. But I kind of need to jump through the hoop so the person supporting me can understand what I'm up against.
Morning all, how're things with you?
I must work on my NHS communication passport thingy today (I think that's what it's called). I have been putting it off, well, completely dreading what it will stir up. On the bright side, I have had support and someone has already done most of the decision making part.
It does feel like a complete waste of time, because I don't think anyone will even notice it. But I kind of need to jump through the hoop so the person supporting me can understand what I'm up against.
18 March
Good morning lovely people, I hope you have the sunshine today.
I have a meeting with the outreach worker who will get the NHS passport on the system for me. Then I will reach out for an appointment with a GP and see if it makes any difference. I'm not holding my breath.
I just printed some stuff from the psychologist. I got quite overwhelmed with feelings about how desperately I needed to do this decades ago and why there was nobody who could understand me then. It seems very helpful, but there's such a lot coming up for me around finally being heard and how long that took.
Good morning lovely people, I hope you have the sunshine today.
I have a meeting with the outreach worker who will get the NHS passport on the system for me. Then I will reach out for an appointment with a GP and see if it makes any difference. I'm not holding my breath.
I just printed some stuff from the psychologist. I got quite overwhelmed with feelings about how desperately I needed to do this decades ago and why there was nobody who could understand me then. It seems very helpful, but there's such a lot coming up for me around finally being heard and how long that took.
19 March
Happy Thursday everybody, are you doing ok? It's another sunny day here, although the gloom still lurks inside. Or is it just in my head?
Using the NHS app for repeat prescriptions has caused me to be very upset this morning. I won't go into detail as I've wasted enough time already.
I've had to do several health admin tasks this morning all involving unfriendly feeling interactions which I didn't have the stomach for.
Keen to get on with some card making now to give myself a break.
Happy Thursday everybody, are you doing ok? It's another sunny day here, although the gloom still lurks inside. Or is it just in my head?
Using the NHS app for repeat prescriptions has caused me to be very upset this morning. I won't go into detail as I've wasted enough time already.
I've had to do several health admin tasks this morning all involving unfriendly feeling interactions which I didn't have the stomach for.
Keen to get on with some card making now to give myself a break.
laen🪻@moonrabbit thank you for caring. I can confirm the card making helped. How are things with you? 
@autoperipatetikos
hooray for card making! i'm glad things are a little lighter 
i've just finished work ... not well at all ... sigh. but work is done and i don't have toooo much to do tomorrow (maybe? hopefully), so that's good. hopefully some equinox things can happen ...
@moonrabbit oh sorry lovely, I hope you can rest now. Have a peaceful evening and think of equinox things for tomorrow 💛 
🌈
🌈@autoperipatetikos
thank you 
i've eaten now and am just sitting for a bit before i get ready for bed.
i hope you're resting too? sending hugs and much care 
@moonrabbit yes, I am, thank you. Feet up and will be in bed soon 
jessicaI hope it went well 💜
@jessica Thank you. I think it went as well as it could have done. I'll have to see what happens next
Alan J. Edmonds@autoperipatetikos Filling in forms can be quite heavy going. I'm glad there was enough for now. Do you think the call (or thinking about the forms) was affecting your mood in the morning?
I keep putting off doing things that I should be doing, both around the house and virtual (e.g. sorting out my digital photos). It's hard to get motivated for some reason.
@alanjedmonds
This morning I was concerned about what was going through my mind when I woke up. But it seems I can't keep up with everything that needs to be completed. Either that or I can't face things.
I hope you find the motivation you need somehow.
This morning I was concerned about what was going through my mind when I woke up. But it seems I can't keep up with everything that needs to be completed. Either that or I can't face things.
I hope you find the motivation you need somehow.
@autoperipatetikos Thanks, Mary. That is pretty relatable, too. I’m now wondering whether I don’t want to face certain things, or if I’m overwhelmed. (Maybe I’m trying to avoid biting off more than I can chew, as they say.)
And I’d nearly forgotten how I keep having intense dreams.
And I’d nearly forgotten how I keep having intense dreams.
@alanjedmonds Some of the call was about exploring if maybe my fatigue and fogginess is a message about my needs not being met (which is kind of what was in my head when I woke up).
I don't if that makes any sense. I haven't fully got my head round it yet.
I don't if that makes any sense. I haven't fully got my head round it yet.
@autoperipatetikos That does make sense to me. I think our minds do a lot of 'background processing', and I can imagine how that could relate to exhaustion and affect the rest of our thinking. (Sorry for the late reply — I still seem to miss notifications on this platform more than others.)
@alanjedmonds
Thank you for saying so. It will be interesting to see how helpful this is to me (or not). The idea of my body trying to tell me something certainly feels like what has been going on.
Thank you for saying so. It will be interesting to see how helpful this is to me (or not). The idea of my body trying to tell me something certainly feels like what has been going on.
@autoperipatetikos Body boredom is new to me. I'll have to look that up to find out more. I hope it goes well tomorrow.
Mind Shambles
Kevin Davy
@autoperipatetikos I'm glad you got some enjoyment out of it, Mary.
@alanjedmonds
Thanks, me too 😊. I am grateful to have friends that I feel safe with.
Thanks, me too 😊. I am grateful to have friends that I feel safe with.
DziadekNot sure if it's the same but I get inexplicably anxious (not severely, thankfully) and go through a similar thing when asked what I'm anxious about - I don't know - and then experience annoyance or intolerance. Presumably because they only get anxious about things they've identified. And all I've got for them is "If I knew what was causing it I wouldn't be anxious!"
@DziadekMick There's certainly something similar about that. I have had the same with anxiety sometimes. It's so painful when people are supposed to be trying to help but they make us feel even worse.
@autoperipatetikos It's sooo difficult to make the right response to people talking about emotional and psychological problems, especially when they refer to our opinion of them. They feel judged and are most unlikely to take any judgment, or advice, well. Best example I know is somebody saying "You think I'm stupid." If you say "No I don't" you actually confirm they must be stupid for thinking that you think their stupid. It's a minefield
@DziadekMick That's true. I have got used to it to some extent. Depending who I'm talking to it can be more or less painful. I am getting to the point/age where I don't have the time to keep trying.
With you there.
ferunando@gureito thank you, that's kind 
Mary, it’s now. It’s always now wherever and whenever we are.
I find giving other names to now not to be very useful. Like calling it 5pm when it distresses me I’ve so much to do in my day. Or calling it Monday when I’ve got five days until the weekend.
(I hope this doesn’t sound mansplaining. It’s intended as a warm and helpful. But I cannot read it too well myself.)
@DziadekMick
Yes, you are right about the now and I read it as helpful.
My thing with Mondays is that out of 7 days to choose from, the people who do various jobs and trades for us seem to gravitate to the same one.
Yes, you are right about the now and I read it as helpful.
My thing with Mondays is that out of 7 days to choose from, the people who do various jobs and trades for us seem to gravitate to the same one.
That seems to me a universal truth of time management. people schedule jobs for next Monday as a way of putting them off. And come Monday they’ve got all these job to do plus a load they didn’t get round to during the last week.
If you’re up for an aside. My local GP is a dream. Unlike most practices, they are red hot on appointments. Here in the UK applications for appointments are on line. And they peak on a Monday. And the effect is always to force appointments down the road. Our practice doesn’t make any Monday appointments. All the doctors triage and then front emergency appointments all day Monday. Result: when you ask for an appointment you’re likely to be seen within 24 hours - all week.
@DziadekMick That sounds such a good idea. It gives hope knowing that they don't all have to have the Monday scramble.
The irony is, they’re not using the NHS model so are threatened with loss of funding.
@DziadekMick I nearly said that I was surprised the NHS allowed it.
The NHS is struggling to keep doctors seeing patients. My son is a consultant oncologist. It would be easy for his team to spend all their time on admin. They’re cut off from patient emails and phone calls. They don’t send emails or message each other. Communication is mainly via online patient records. essentially they’re structured to avoid targets being set by management other than patients seen. Similar to our GP example they’re gaming the system to do their jobs.
@DziadekMick It's really grim. I'm so sorry your son has to go through that.
@autoperipatetikos I don’t like the disruption of having things done to the house. Later this month they’re coming to do a water meter survey/fitting. I’m overthinking all the potential problems…
@alanjedmonds
The worst part was having to have all the radiators turned off including rooms that weren't even nearly ready. In this case we didn't know what the problem was, so I couldn't do it in advance. Glad it's over with now though!
The worst part was having to have all the radiators turned off including rooms that weren't even nearly ready. In this case we didn't know what the problem was, so I couldn't do it in advance. Glad it's over with now though!