Mary Starbuck19 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.
20 March
Morning everyone, did you sleep well enough? I had an odd dream about friends entering in a fake food maker's contest. I was helping them set up their display but feeling very confused because why would this be a thing that people actually do?
Yesterday's thing with my repeat prescription has been troubling me a lot.
With one eye on what the psychologist has been talking about and looking at my usual patterns, I think I can see it more logically.
I have a big need for adjustments to the system for requesting and collecting repeats, but there is no possibility, understanding or facility for this.
I have become somewhat disconnected.
I did indeed order my meds and I've not run out (hooray) but I've had to endure the person talking down to me because they don't acknowledge the terrible problems I'm having.
As per an exercise suggested to me, I have said out loud to myself: "I'm angry/frustrated/annoyed because [what I said above] and it's okay and reasonable for me to feel this way".
Morning everyone, did you sleep well enough? I had an odd dream about friends entering in a fake food maker's contest. I was helping them set up their display but feeling very confused because why would this be a thing that people actually do?
Yesterday's thing with my repeat prescription has been troubling me a lot.
With one eye on what the psychologist has been talking about and looking at my usual patterns, I think I can see it more logically.
I have a big need for adjustments to the system for requesting and collecting repeats, but there is no possibility, understanding or facility for this.
I have become somewhat disconnected.
I did indeed order my meds and I've not run out (hooray) but I've had to endure the person talking down to me because they don't acknowledge the terrible problems I'm having.
As per an exercise suggested to me, I have said out loud to myself: "I'm angry/frustrated/annoyed because [what I said above] and it's okay and reasonable for me to feel this way".
22 March
Hello how's your weekend going?
Yesterday we needed something from a busy shopping centre and I wasn't sure it was wise, but went anyway. We were early enough to do it fairly comfortably and I stocked up on some craft supplies.
I was quite excited about the items I got, so I went straight to the crafting as soon as I'd put a load of washing on. I was really pleased that I'd worked through a block I was having. I noticed how happy I was feeling with my project.
That's so unusual for me lately and it feels like I've been very distracted from my everyday responsibilities. It was only for an afternoon, but my brain is telling me I've totally abandoned the important stuff. I'm a bit bewildered.
Hello how's your weekend going?
Yesterday we needed something from a busy shopping centre and I wasn't sure it was wise, but went anyway. We were early enough to do it fairly comfortably and I stocked up on some craft supplies.
I was quite excited about the items I got, so I went straight to the crafting as soon as I'd put a load of washing on. I was really pleased that I'd worked through a block I was having. I noticed how happy I was feeling with my project.
That's so unusual for me lately and it feels like I've been very distracted from my everyday responsibilities. It was only for an afternoon, but my brain is telling me I've totally abandoned the important stuff. I'm a bit bewildered.
23 March
How is your Monday? The weather here is quite nice. Inside my head not so good.
Life is just too much. I can't do all the processing. My brain is trying to visualise what it would be like if I had had the awareness to put boundaries in place before the damage was done.
I still don't even know what these boundaries would be like. Probably protecting the time and means to recharge and restricting input. But that would have isolated me from school, relationships, hobbies and work. That seems confusing and unbelievably difficult. It would also depend on understanding and support that I'm absolutely certain wasn't there.
Could I have worked and still maintained boundaries? Doubtful. Maybe if I had no life outside. Without life outside, support of family or friends wouldn't work.
Sorry I'm going round in circles.
How is your Monday? The weather here is quite nice. Inside my head not so good.
Life is just too much. I can't do all the processing. My brain is trying to visualise what it would be like if I had had the awareness to put boundaries in place before the damage was done.
I still don't even know what these boundaries would be like. Probably protecting the time and means to recharge and restricting input. But that would have isolated me from school, relationships, hobbies and work. That seems confusing and unbelievably difficult. It would also depend on understanding and support that I'm absolutely certain wasn't there.
Could I have worked and still maintained boundaries? Doubtful. Maybe if I had no life outside. Without life outside, support of family or friends wouldn't work.
Sorry I'm going round in circles.
24 March
How are things? Weather seems quite windy.
The usual Monday cleaning has moved to Tuesday. I'm quite glad there's one less thing to clash, but it does take out a day that would be free otherwise.
I'm still rather overwhelmed and feel that I am better off not saying too much for today.
I've been sorting out the bottom of my wardrobe. I'd had a string of beads hanging inside the door but they broke and went all over (including in my boots). I put it off for weeks. The thought of going through every little thing that accumulated over 25 years was too daunting. I stopped short of checking pockets of every item of clothing.
How are things? Weather seems quite windy.
The usual Monday cleaning has moved to Tuesday. I'm quite glad there's one less thing to clash, but it does take out a day that would be free otherwise.
I'm still rather overwhelmed and feel that I am better off not saying too much for today.
I've been sorting out the bottom of my wardrobe. I'd had a string of beads hanging inside the door but they broke and went all over (including in my boots). I put it off for weeks. The thought of going through every little thing that accumulated over 25 years was too daunting. I stopped short of checking pockets of every item of clothing.
26 March
Oh dear, I didn't mean to miss my update yesterday! Wednesday started with a lot of brainfog, possibly from Tuesday's wardrobe sorting. I then decided to try joining my husband on some errands (on the understanding I could wait in the car).
After that there was a dreaded admin task to be done. I completed the first stage and did some filing as well, but that caused an argument and I struggled to keep going afterwards.
Today I've got the phone call stage of the admin task, which includes DWP. There's always the potential for that to go horribly wrong.
We are taking a relation out for lunch as well, so there's more than enough for me to be going on with.
Hope everybody here is doing OK. Happy Thursday to you!
27 March
How're you all doing? I hope you've got good plans for the weekend. The (UK) clocks go forward this time, don't they?
I don't have any plans. I hope to do some card making.
I'm feeling pretty awful. I can't explain but I feel like I might have a great big cry.
Whatever was wrong to start with became more intense after trying to get some of my admin done. It should have been done yesterday but my headache didn't clear up until the evening. Hanging on the phone for so long today meant I couldn't keep regulated. Still got loads left to do.
I've remembered something I want to watch on TV, so I'll give that a try and it might just help me to a better state of mind.
How're you all doing? I hope you've got good plans for the weekend. The (UK) clocks go forward this time, don't they?
I don't have any plans. I hope to do some card making.
I'm feeling pretty awful. I can't explain but I feel like I might have a great big cry.
Whatever was wrong to start with became more intense after trying to get some of my admin done. It should have been done yesterday but my headache didn't clear up until the evening. Hanging on the phone for so long today meant I couldn't keep regulated. Still got loads left to do.
I've remembered something I want to watch on TV, so I'll give that a try and it might just help me to a better state of mind.
28 March
I promised myself a weekend "off". I went with my husband to the seaside. He had to pick something up. I found a brilliant craft shop and it was a beautiful day for seeing the sea.
I'm not doing very well apart from that.
I'm really struggling with not knowing how to express what's going on. And struggling with there being no answers or support even if I could tell my story properly.
I promised myself a weekend "off". I went with my husband to the seaside. He had to pick something up. I found a brilliant craft shop and it was a beautiful day for seeing the sea.
I'm not doing very well apart from that.
I'm really struggling with not knowing how to express what's going on. And struggling with there being no answers or support even if I could tell my story properly.
29 March
Hi, how're things with you this Sunday?
I was thinking recently about one of my early relationships (1983/4). This boyfriend's mother was a therapist. What I know now about how therapy can be very unsuitable for my autistic brain, makes me wonder what mixed up ideas I've been carrying round for decades. I had buried and forgotten about this in the background of the heartbreak of teenage love.
It could be the reason I've tried so many therapists but never asked myself if this might not be for me. There had been quite a bit of conversation back then about my mental health. I'd got the message that I needed to explore what was going on and to get it "fixed". I hate the thought that perhaps it's all been about me trying to prove that I could be a better person than the one this boyfriend rejected.
That seems such a terrible mistake. I had no way of knowing that and I'm not giving myself a hard time for it, but what a massive weight to be carrying all that time.
I can see that I needed to cling to this idea of fixing myself and everything would be alright, but it's so sad that I've wasted the best years of my life on trying to fix what isn't fixable and believing I was the problem.
Edit for typo.
Hi, how're things with you this Sunday?
I was thinking recently about one of my early relationships (1983/4). This boyfriend's mother was a therapist. What I know now about how therapy can be very unsuitable for my autistic brain, makes me wonder what mixed up ideas I've been carrying round for decades. I had buried and forgotten about this in the background of the heartbreak of teenage love.
It could be the reason I've tried so many therapists but never asked myself if this might not be for me. There had been quite a bit of conversation back then about my mental health. I'd got the message that I needed to explore what was going on and to get it "fixed". I hate the thought that perhaps it's all been about me trying to prove that I could be a better person than the one this boyfriend rejected.
That seems such a terrible mistake. I had no way of knowing that and I'm not giving myself a hard time for it, but what a massive weight to be carrying all that time.
I can see that I needed to cling to this idea of fixing myself and everything would be alright, but it's so sad that I've wasted the best years of my life on trying to fix what isn't fixable and believing I was the problem.
Edit for typo.
30 March
Hello, how's it going?
I had my call with the psychologist today and I'm very pleased to say that it has helped me feel more ok than I was.
I did some laundry this morning and some card making after the call this afternoon. I did well with the cards but my evening has been a bit frustrating.
Hello, how's it going?
I had my call with the psychologist today and I'm very pleased to say that it has helped me feel more ok than I was.
I did some laundry this morning and some card making after the call this afternoon. I did well with the cards but my evening has been a bit frustrating.
31 March
Morning everyone, I hope you've had a good start. Doesn't look very bright outside although the weather on TV says it's mild.
I was woken up very early by a bad dream. It involved doing some gardening with my husband and there was this small but terrifying creature* in the root of a plant that I had asked him to dig up. Despite my attempts to alert him to my overwhelming fear, he remained oblivious the creature and was about to hand it to me. I woke up before that.
Having feelings now about being unable to communicate what I need people to know and see. How much that frightens me.
*possibly an alien or fictional poisonous sea creature
Morning everyone, I hope you've had a good start. Doesn't look very bright outside although the weather on TV says it's mild.
I was woken up very early by a bad dream. It involved doing some gardening with my husband and there was this small but terrifying creature* in the root of a plant that I had asked him to dig up. Despite my attempts to alert him to my overwhelming fear, he remained oblivious the creature and was about to hand it to me. I woke up before that.
Having feelings now about being unable to communicate what I need people to know and see. How much that frightens me.
*possibly an alien or fictional poisonous sea creature
2 April
Happy Thursday everyone. I hope your day is more sunny than mine so far.
I have got ready to go out two days in a row now. Managed to get a fairly big decision made that has been left for too long and made a big purchase for the house.
Forgot to have coffee first so I'm catching up with that now.
While I was visiting yesterday I spent a while watching a (ferral?) parakeet eating from the peanut feeder in the garden. Apparently a few of them stop by most days now. Also amused to hear about a neighbour's 3 cats, named Ella, Fitz and Gerald 🤣.
I need to get a card finished. My creativity has not been flowing smoothly on this one so it's taken a long time. Will have to hurry to get it posted too.
Happy Thursday everyone. I hope your day is more sunny than mine so far.
I have got ready to go out two days in a row now. Managed to get a fairly big decision made that has been left for too long and made a big purchase for the house.
Forgot to have coffee first so I'm catching up with that now.
While I was visiting yesterday I spent a while watching a (ferral?) parakeet eating from the peanut feeder in the garden. Apparently a few of them stop by most days now. Also amused to hear about a neighbour's 3 cats, named Ella, Fitz and Gerald 🤣.
I need to get a card finished. My creativity has not been flowing smoothly on this one so it's taken a long time. Will have to hurry to get it posted too.
3 April
How's everyone doing this Good Friday? I hope there's a lot of holiday/weekend stuff going on.
Yesterday I got the card finished and posted, but for various reasons I was quite stressed.
I am noticeably more foggy and fatigued today. I believe it's due to having too much happening (one thing over the last few days/next week, another on Sunday and the third on Monday and Tuesday).
I have expressed that I don't like saying no to things, but that it would have been better. I was pleased this was received in a supportive way. I've been reminded I can still opt out of the third thing.
I want to do something creative now, but I'm afraid I won't fit in any of my regular household tasks that I'm behind with.
How's everyone doing this Good Friday? I hope there's a lot of holiday/weekend stuff going on.
Yesterday I got the card finished and posted, but for various reasons I was quite stressed.
I am noticeably more foggy and fatigued today. I believe it's due to having too much happening (one thing over the last few days/next week, another on Sunday and the third on Monday and Tuesday).
I have expressed that I don't like saying no to things, but that it would have been better. I was pleased this was received in a supportive way. I've been reminded I can still opt out of the third thing.
I want to do something creative now, but I'm afraid I won't fit in any of my regular household tasks that I'm behind with.
4 April
Hello, happy Saturday and long weekend-ing.
I am not having a good day. Plans for tomorrow have been suddenly brought back to today. Others have been very agitated about this. I am trying very hard to not let that stop me, as it's something I requested for a specific reason and I will feel very disappointed if I can't see it through. I'm just really not in the right frame of mind now for being in a big city with too many people.
Hello, happy Saturday and long weekend-ing.
I am not having a good day. Plans for tomorrow have been suddenly brought back to today. Others have been very agitated about this. I am trying very hard to not let that stop me, as it's something I requested for a specific reason and I will feel very disappointed if I can't see it through. I'm just really not in the right frame of mind now for being in a big city with too many people.
5 April
I hope you're enjoying chocolate eggs, or whatever works for you on this particular Sunday.
Yesterday was challenging for me and I still feel hungover (without the alcohol). I have opted out of the family thing for tomorrow and Tuesday. I am not happy that I won't be there, but it's for the best.
Considering my discombobulation yesterday, it was fairly successful and I'm grateful that I could do a "me" thing.
I am, as ever, very distressed about feeling out of sync. A couple of examples of other people's difficilties with this have come up in conversation today and it's painful that the person having the problem must have not properly listened when I've described experiencing the same. Why is it taken so personally when I'm going at a different speed? The unhappiness that is directed at me really hurts. The hurt is greater when I'm making an effort to compensate (either speeding up or slowing down) according to the times I've got I wrong before. Seems I am doomed to always be wrong.
I hope you're enjoying chocolate eggs, or whatever works for you on this particular Sunday.
Yesterday was challenging for me and I still feel hungover (without the alcohol). I have opted out of the family thing for tomorrow and Tuesday. I am not happy that I won't be there, but it's for the best.
Considering my discombobulation yesterday, it was fairly successful and I'm grateful that I could do a "me" thing.
I am, as ever, very distressed about feeling out of sync. A couple of examples of other people's difficilties with this have come up in conversation today and it's painful that the person having the problem must have not properly listened when I've described experiencing the same. Why is it taken so personally when I'm going at a different speed? The unhappiness that is directed at me really hurts. The hurt is greater when I'm making an effort to compensate (either speeding up or slowing down) according to the times I've got I wrong before. Seems I am doomed to always be wrong.
6 April
Morning everyone, hope your long weekend is going well, if it's a holiday where you are.
I am trying to get my update in quickly before the day gets away from me. I'm feeling sad about not having the spoons to do the thing with the family. When you get left at home it's not much fun, although I do feel positive about making the right decision.
There was an argument last night which is not helping. I'm rather overwhelmed before I've even started my day.
Lots of housework tasks to be done plus extra stuff because I'm on my own for a couple of days. Don't know how to squeeze in something I can feel good about.
Morning everyone, hope your long weekend is going well, if it's a holiday where you are.
I am trying to get my update in quickly before the day gets away from me. I'm feeling sad about not having the spoons to do the thing with the family. When you get left at home it's not much fun, although I do feel positive about making the right decision.
There was an argument last night which is not helping. I'm rather overwhelmed before I've even started my day.
Lots of housework tasks to be done plus extra stuff because I'm on my own for a couple of days. Don't know how to squeeze in something I can feel good about.
7 April
Hope you're all having an at least ok day. It's nice and sunny here.
I'm trying to get this done quickly again today, before my brain can start kicking off. I've got some washing in and started to get another load ready.
I have a call after lunch that I'm looking forward to, so I'm grateful for that. Otherwise I'm just about hanging on.
Hope you're all having an at least ok day. It's nice and sunny here.
I'm trying to get this done quickly again today, before my brain can start kicking off. I've got some washing in and started to get another load ready.
I have a call after lunch that I'm looking forward to, so I'm grateful for that. Otherwise I'm just about hanging on.
8 April
Hello how are you doing?
Yesterday became a bit rushed and chaotic but I kind of managed. I did a fair bit of tidying and then went for a short walk by the river. It was lovely. Lots of life, blossom, children playing, dogs being walked, posters up about wild garlic/responsible foraging and people talking about what could happen with the war. It fascinates me looking at old photos of the area from before WW1. There was a mill on the river and people would gather to skate when the flood plane froze over. I always wonder if their families are still around and if they would have passed stories down.
Hello how are you doing?
Yesterday became a bit rushed and chaotic but I kind of managed. I did a fair bit of tidying and then went for a short walk by the river. It was lovely. Lots of life, blossom, children playing, dogs being walked, posters up about wild garlic/responsible foraging and people talking about what could happen with the war. It fascinates me looking at old photos of the area from before WW1. There was a mill on the river and people would gather to skate when the flood plane froze over. I always wonder if their families are still around and if they would have passed stories down.
9 April
Happy Thursday (sorry if it's not - I have had a habit of saying it for many years). How are you doing?
I've had my hair cut and I'm pleased that has not caused me too much stress or difficulty today. Lots going on in my head to work through.
Yesterday it was the cleaning delayed from Easter and my husband came back from his family occasion, so a lot to be done. After that I started on some stuff for my next appointment.
I still need to do a lot more though and I'm concerned about not doing any craft or laundry for a couple of days.
Happy Thursday (sorry if it's not - I have had a habit of saying it for many years). How are you doing?
I've had my hair cut and I'm pleased that has not caused me too much stress or difficulty today. Lots going on in my head to work through.
Yesterday it was the cleaning delayed from Easter and my husband came back from his family occasion, so a lot to be done. After that I started on some stuff for my next appointment.
I still need to do a lot more though and I'm concerned about not doing any craft or laundry for a couple of days.
10th April
Morning all, how's your Friday going?
It's a sad anniversary today and along with feeling down generally, it's challenging. Hoping to get some plants for hanging baskets later as that would have been mum's choice of activity.
Yesterday I had a suggestion of a product involving AI in response to a query I would never have imagined even close to suitable. It seems I must now expect conversation with any person on any topic could suddenly be invaded by AI.
Yesterday wasn't a great day and I became quite stuck in the afternoon with a shock of another executive function fail because my brain lied to me again.
Morning all, how's your Friday going?
It's a sad anniversary today and along with feeling down generally, it's challenging. Hoping to get some plants for hanging baskets later as that would have been mum's choice of activity.
Yesterday I had a suggestion of a product involving AI in response to a query I would never have imagined even close to suitable. It seems I must now expect conversation with any person on any topic could suddenly be invaded by AI.
Yesterday wasn't a great day and I became quite stuck in the afternoon with a shock of another executive function fail because my brain lied to me again.
11 April
Good morning, I hope you're doing well and enjoying something beautiful today.
Not sure about me. I'm feeling the lack of sunshine and I hope it won't infect my card making. I'm rather grumpy.
I've got some washing in the machine which is a relief but that relief is also a worry, because how did something so easy and basic become so hard?
It was good yesterday to message a few people who were in touch re mum's anniversary. I like the connection, even if I'm not entirely sure that these relationships are what I need.
I was pleased to hear that someone else noticed that in The Other Bennet Sister, Mary's struggles are very much like those of many ND people. Looking forward to catching up on that. Please let there be a happy ending.
Good morning, I hope you're doing well and enjoying something beautiful today.
Not sure about me. I'm feeling the lack of sunshine and I hope it won't infect my card making. I'm rather grumpy.
I've got some washing in the machine which is a relief but that relief is also a worry, because how did something so easy and basic become so hard?
It was good yesterday to message a few people who were in touch re mum's anniversary. I like the connection, even if I'm not entirely sure that these relationships are what I need.
I was pleased to hear that someone else noticed that in The Other Bennet Sister, Mary's struggles are very much like those of many ND people. Looking forward to catching up on that. Please let there be a happy ending.
13 April
Hello! I hope everyone is doing OK.
Apologies for missing yesterday. Have I missed much?
We did a big food shop and then some crafting, but I kind of forgot what day it was and felt very distracted and weird.
I've had a call with the psychologist today and that is quite enough thinking stuff for now. Suddenly very cold and can't get warm. Must be time for more hot tea!
Hello! I hope everyone is doing OK.
Apologies for missing yesterday. Have I missed much?
We did a big food shop and then some crafting, but I kind of forgot what day it was and felt very distracted and weird.
I've had a call with the psychologist today and that is quite enough thinking stuff for now. Suddenly very cold and can't get warm. Must be time for more hot tea!
14 April
Morning, how is everyone doing today?
I have a lot to do connected with some decorating my husband has been doing. Glad it looks sunny for going out.
My connection with people here feels like it has reduced but maybe I'm just panicking. I hope it's no more than the nature of social media.
My call yesterday was helpful and I'm grateful for that.
I've been feeling weird for a few days and I have no idea what it is. It's a bit like there's a hole where something is missing, but I'm not sure what. Does that make any sense?
Morning, how is everyone doing today?
I have a lot to do connected with some decorating my husband has been doing. Glad it looks sunny for going out.
My connection with people here feels like it has reduced but maybe I'm just panicking. I hope it's no more than the nature of social media.
My call yesterday was helpful and I'm grateful for that.
I've been feeling weird for a few days and I have no idea what it is. It's a bit like there's a hole where something is missing, but I'm not sure what. Does that make any sense?
15 April
Hello, how's everyone getting on with Wednesday?
I have two appointments and a rush in between.
I've got some washing done and now only a few minutes before the first meeting.
Hello, how's everyone getting on with Wednesday?
I have two appointments and a rush in between.
I've got some washing done and now only a few minutes before the first meeting.
16 April
How is your Thursday?
My eye appointment yesterday was unexpectedly positive. It was quiet, quick, no eyedrops needed, no prodding or discomfort, scans also done and all in about 20 minutes. Surprising how easy it can be when there are no doctors involved.
I've been doing laundry and catching up with emails today. Ordering supplements and appointment admin. So much I'm behind with.
How is your Thursday?
My eye appointment yesterday was unexpectedly positive. It was quiet, quick, no eyedrops needed, no prodding or discomfort, scans also done and all in about 20 minutes. Surprising how easy it can be when there are no doctors involved.
I've been doing laundry and catching up with emails today. Ordering supplements and appointment admin. So much I'm behind with.
17 April
Hope everybody is having a good (or at least ok) Friday.
I've been out and bought a little set of paints (I love the pastel colours) and some tulle fabric. I hope to use the tulle to sandwich scraps of old fabric between so that they can become part of a usable garment or cushion cover or something like that.
For now though I'm very tired and I've got a headache so I'm not doing much more.
Hope you all have something to look forward to this weekend.
Hope everybody is having a good (or at least ok) Friday.
I've been out and bought a little set of paints (I love the pastel colours) and some tulle fabric. I hope to use the tulle to sandwich scraps of old fabric between so that they can become part of a usable garment or cushion cover or something like that.
For now though I'm very tired and I've got a headache so I'm not doing much more.
Hope you all have something to look forward to this weekend.
18 April
Hello everybody, I hope all is well this Saturday.
I have been feeling quite positive so far about some new ideas. Got a few things done and my creativity has been helped along by yesterday's paint purchase (not put paint to brush yet but planned what I will do).
We are out later and I've got my stuff ready. Feeling very tired now and I would love to just sit, but this evening is something I definitely want to do.
Hello everybody, I hope all is well this Saturday.
I have been feeling quite positive so far about some new ideas. Got a few things done and my creativity has been helped along by yesterday's paint purchase (not put paint to brush yet but planned what I will do).
We are out later and I've got my stuff ready. Feeling very tired now and I would love to just sit, but this evening is something I definitely want to do.
19 April
Is Sunday being good to you?
The time has flown for me and I don't seem to feel like I can catch up, but it's kind of going OK. We had a good time last night seeing stand up comedy and I was given a beautiful handmade paper notebook as a gift.
Now struggling to remember all the things I need to do in time to actually get them done. Monday tomorrow and lots in the diary to juggle and prepare for.
Is Sunday being good to you?
The time has flown for me and I don't seem to feel like I can catch up, but it's kind of going OK. We had a good time last night seeing stand up comedy and I was given a beautiful handmade paper notebook as a gift.
Now struggling to remember all the things I need to do in time to actually get them done. Monday tomorrow and lots in the diary to juggle and prepare for.
20 April
Morning all, I hope you've got good weather and a glimmer of joy.
I've got my autistic adults meeting this morning. I don't want to miss another one (I've avoided the last 2 months). Also picking up a parcel of supplements that I failed to order for about a month.
Looking forward to something creative afterwards.
Morning all, I hope you've got good weather and a glimmer of joy.
I've got my autistic adults meeting this morning. I don't want to miss another one (I've avoided the last 2 months). Also picking up a parcel of supplements that I failed to order for about a month.
Looking forward to something creative afterwards.
21 April
How are you all doing? Looks like a nice day so I got some washing out (now I've said that I can see dark clouds).
It's cleaning today moved from Monday. Doing the tidying and washing has wiped me out.
I think I might be having a reaction to something from my meeting yesterday. I asked a new person if I could talk to them about something (the group is for sharing experience and peer support). But when I asked, they were maybe unprepared and responded in a professional/official way rather than personal and friendly. I felt rather stupid, because someone commented afterwards. I imagine the person felt awkward so defaulted to her working response, but I was trying to talk to her as if she was a personal contact. She did say she had come along as both the professional and an autistic individual. Confusing.
I have just been catching up with my neighbour who was very chatty about the news of her son getting married. Also wanted to give me some mangoes as she had too many.
I have taken the plunge and joined an online ND/queer friendship club and the first zoom is tonight. It is ok if I just want to listen with my camera off. Not sure if I've got the energy, but it could be just what I need.
How are you all doing? Looks like a nice day so I got some washing out (now I've said that I can see dark clouds).
It's cleaning today moved from Monday. Doing the tidying and washing has wiped me out.
I think I might be having a reaction to something from my meeting yesterday. I asked a new person if I could talk to them about something (the group is for sharing experience and peer support). But when I asked, they were maybe unprepared and responded in a professional/official way rather than personal and friendly. I felt rather stupid, because someone commented afterwards. I imagine the person felt awkward so defaulted to her working response, but I was trying to talk to her as if she was a personal contact. She did say she had come along as both the professional and an autistic individual. Confusing.
I have just been catching up with my neighbour who was very chatty about the news of her son getting married. Also wanted to give me some mangoes as she had too many.
I have taken the plunge and joined an online ND/queer friendship club and the first zoom is tonight. It is ok if I just want to listen with my camera off. Not sure if I've got the energy, but it could be just what I need.
22 April
Morning everyone, how's your Wednesday?
My brain is being very messy today. Not helpful. I think I had a disturbed night.
My zoom meeting went fairly well last night but today I'm very uncertain.
I didn't manage to get the anxiety about Monday's meeting out of my system and it's still niggling at me. I've got other things that need attention and I've not been able to face them.
There's noisy work going on here today and it's not easy to relax.
In more amusing news, there's a great tit who has been rather obsessed with attempting to get into our garden doors. Possibly attracted by their reflection? Tries flying at the glass, or pecking at the lock, or sitting on the handles and singing. They keep coming back again and again and I'm thinking I'll have to be careful if I want the doors open (we mostly use the kitchen door to get outside).
23 April
Good morning and happy Thursday.
It's a lovely sunny day here which is handy seeing as I'm going out to visit a relative. It's a regular, familiar thing for me, but I have come to dread the way it feels harder and harder each time to do the driving.
Good morning and happy Thursday.
It's a lovely sunny day here which is handy seeing as I'm going out to visit a relative. It's a regular, familiar thing for me, but I have come to dread the way it feels harder and harder each time to do the driving.
24 April
Hello and happy Friday.
I've been having some bad pain in my hip. It was very disturbing over night. Seems better when I keep moving, but there are things I need to sit down for (mainly pacing myself), so that's troublesome. I have no idea what started it and the pain relief I tried was not doing anything.
Yesterday was OK and I got the bedding changed after I was back home.
This morning I have got the washing done but I've got lots to do and think about so I'll try to move as much as I can.
Hello and happy Friday.
I've been having some bad pain in my hip. It was very disturbing over night. Seems better when I keep moving, but there are things I need to sit down for (mainly pacing myself), so that's troublesome. I have no idea what started it and the pain relief I tried was not doing anything.
Yesterday was OK and I got the bedding changed after I was back home.
This morning I have got the washing done but I've got lots to do and think about so I'll try to move as much as I can.
25 April
How's your Saturday going?
I'm feeling grumpy because my pain is still bothering me and has moved into my back as well. It's making me so tired. We went for a walk to Tesco to help me keep moving and that was OK. Quite a relief.
We've got to go out this evening and I'm not looking forward to it. It will probably be a good thing for me but it would be so much easier to just stay at home.
How's your Saturday going?
I'm feeling grumpy because my pain is still bothering me and has moved into my back as well. It's making me so tired. We went for a walk to Tesco to help me keep moving and that was OK. Quite a relief.
We've got to go out this evening and I'm not looking forward to it. It will probably be a good thing for me but it would be so much easier to just stay at home.
26 April
Hello everybody, is your weekend going OK?
I'm very foggy after a long (for me) drive last night. Sitting in the car worked out OK, except that to start with I was comfortable, but when it was time to drive home I was getting pain in my hip and back. More comfortable in bed than the last few nights though.
I'm not concentrating very well while this pain is bothering me so that's not good for my mental health. I am panicking that it's never going away. The thing about how sitting down makes it worse means I am having to rethink and find new ways plan my activities and rest. Hoping to go for another walk later, but I'm feeling so tired with it all.
27 April
Morning (almost), hope you're doing ok.
The good news is my aches and pains are more bearable today.
I have done some washing, hung it out and sent an email whilst waiting for my 2pm call. Currently on hold for the GP dispensery line because this month there is another unknown problem with ordering the same items at the regular time 😬 I've been 3 in the queue for 10 minutes and wonder how long it gets before you can request a call back. Sigh.
Morning (almost), hope you're doing ok.
The good news is my aches and pains are more bearable today.
I have done some washing, hung it out and sent an email whilst waiting for my 2pm call. Currently on hold for the GP dispensery line because this month there is another unknown problem with ordering the same items at the regular time 😬 I've been 3 in the queue for 10 minutes and wonder how long it gets before you can request a call back. Sigh.
28 April
Morning everybody, how are things with you?
It is not such a sunny day today, but there's still a little blue sky. Also a bit more pain than yesterday, but it hasn't come back completely.
My call with the psychologist was good. Started to explore the idea of finding a local physio who is up to speed with EDS. He is going to ask his colleagues if they know of anyone near me. Went on to ask about a GP. All his contacts are specialists, so not expecting any help with GPs, but there might be a known local rheumatologist who can perhaps fill in some of the gaps (not getting my hopes up too much though).
29 April
Morning everybody, is your Wednesday working out OK?
I will try to have another short walk today (I've managed a few in a row now which feels really good). The pain came back last night but less than the night before so I'm cautiously hoping it will be ok today.
Thinking about something the psychologist said. I'd suggested writing down a certain activity each day (because I don't reliably remember later) and he asked that I don't write the date so it's not obvious if I miss a day. The reason being that if I notice not doing the thing, it's unhelpful in the context of this list being a record for self compassionate purposes.
This got me thinking. If it's not self compassionate (and therefor harmful to my nervous system) what the hell have I been doing to my nervous system this whole time with my autistic pattern recognition auditing all the things that I have failed to do?
Does anyone know what I mean? Is this pattern recognition or something else entirely? Can you adjust yours to filter out what is unhelpful?
Morning everybody, is your Wednesday working out OK?
I will try to have another short walk today (I've managed a few in a row now which feels really good). The pain came back last night but less than the night before so I'm cautiously hoping it will be ok today.
Thinking about something the psychologist said. I'd suggested writing down a certain activity each day (because I don't reliably remember later) and he asked that I don't write the date so it's not obvious if I miss a day. The reason being that if I notice not doing the thing, it's unhelpful in the context of this list being a record for self compassionate purposes.
This got me thinking. If it's not self compassionate (and therefor harmful to my nervous system) what the hell have I been doing to my nervous system this whole time with my autistic pattern recognition auditing all the things that I have failed to do?
Does anyone know what I mean? Is this pattern recognition or something else entirely? Can you adjust yours to filter out what is unhelpful?
30 April
Happy Thursday! Hope your day is behaving itself.
Eek! I have an in person GP appointment at 2pm. I filled in a form and got a text back almost instantly. Now a bit panicked. I do need to discuss some HRT meds, but I don't know where to start with all the other things that they always back away from, or blame on me, or respond as though I'm being far too tricky.
I am very pleased that I did some crafting last night that was a new skill to me and I had been a bit afraid of tackling. Remember last year I did the weaving workshop? I've still got the pieces of cloth we made and need to finish it. The plan is to cover a lampshade. I need to neaten the edges and yesterday I made a twisted fringe along one short side. It's not bad if I do say so myself. Still no idea how to finish the messy selvedges or to join the two pieces together.
1 May
Happy new month! How is it going for you?
I'm feeling sad and I'm not sure why. It could be something to do with starting some tidying and decluttering yesterday.
Or maybe the doctor. I was thrown because it was a different one who didn't seem interested in talking about the things that matter.
The immediate issue seems far from resolved, but I didn't get much explanation.
I do not feel the communication passport thing has been helpful, or worth the effort, or taken seriously. Now I feel let down but like it's my own fault.
This morning I felt bad that I wasn't up to going out and wasn't ready for dropping my husband at the station but that was harder to refuse. Had to dash back for something forgotten too. Got back home about 10:30 ish, but it's taken me until 12:20 something to get this far. I don't understand how this took so long. All I've done is to catch up here.
2 May
How are you all doing? What's going on in your Saturday?
I have been having some big things going round in my head which I will share when I've finished working through them.
I started off today very sad because I sent something off to auction that I just didn't want to part with. I do think it's the right thing to do, though and I am quite optimistic that this might be the start of a healthy streak of decluttering.
3 May
Hello! How are you doing? Is your Sunday being kind?
I am very behind and not having much fun trying to catch up. My sleep was not very good and I woke up early. Fatigue is beating me. Just had a coffee.
Had dinner with friends last night and that was quite challenging in several ways, although there were good bits. It always amazes me that I seem to be good company sometimes, especially when with friends that I've not seen for years (that is such a worry that I'm exhausted from the beginning).
Will try to have a nice cosy afternoon.
4 May
How's everybody doing?
It's grey and dull here. I've done some washing and hung it out but wouldn't be surprised if it rains. I can't push through a feeling of being stuck today. I seem to have become more drained as the day has gone on.
I've been thinking about fatigue and the confusion with the way it is misunderstood. I think when I was diagnosed with ME/CFS (2000) I believed it meant that I didn't have fatigue before the identified onset. Something about that didn't make sense but I hadn't yet learned to question what doctors told me.
There is probably a lot in my childhood that could have been related to fatigue. I had no clue there was possibly something disabling me and even if I had, I would have been far too afraid to speak up about it. It's just sunk in that I could have done so much better if I'd only known that I was deserving of reasonable adjustments.
5 May
Morning everybody, I hope Tuesday is not a problem for you.
I have a lot going on today. Partly the regular Monday stuff rearranged after the bank holiday. It's all a bit much and I'm in a rush, so I'll try to catch up on here later.
Morning everybody, I hope Tuesday is not a problem for you.
I have a lot going on today. Partly the regular Monday stuff rearranged after the bank holiday. It's all a bit much and I'm in a rush, so I'll try to catch up on here later.
6 May
Hello, how's your Wednesday working out?
We've been out for a few things including a little walk. I've had yet another different prescription item turn out to be in short supply so now I'll have play chase the meds again.
I was pleased yesterday that I got another card made to post today and a load of washing that I could have easily pretended didn't have to be done.
7 May
Happy Thursday all. Hope you've managed to vote if it's happening where you are. We've done a postal vote.
Yesterday I did a small repair job using a tool I've never tried before (but had for years). Very pleased with myself. Later did a bit more on my craft project. Other good news is that I've had an email from someone doing a survey I've completed about the experience of ND life in my county. Looking forward to hearing more about that.
I woke up about an hour early and didn't get back off to sleep. Since I've been up I seem to have drastically slowed down. It's like being in a living nightmare and I'm struggling so much. My husband has gone out for the day so I don't have the comfort of his company.
8 May
Good afternoon everybody, how are you doing today?
So sorry for not chatting with anyone so far today. I've had a 2 hour phone call with a lovely person doing a survey of the experience of ND life in our county. It was a conversation I actually really enjoyed. He's very committed to the plan and intends to use our input (with consent) to inform local services and authorities of the reality behind the label. Not sure if that is actually possible, but I appreciate his efforts.
Going out for a little walk next. I wonder what's going on in Tales of the Riverbank today. I haven't seen the swan family for a long time, but the muntjacs are very lively. We once saw a kingfisher in a tree when the flood plane was up, which I found so exciting.
9 May
Morning everybody, what's happening in your weekends?
If anyone is interested, on our walk yesterday we said hello to a family of squirrels, saw bubbles and clouds indicating fish digging in the mud, and I was landed on by a couple of mayflies. I've never met mayflies before so that was educational.
Our council vote and most of the surrounding ones have gone Reform. We border on the lone Green patch.
Trying to prove to myself that I can still do this in the morning and that I'm not declining so far that there's no point. It's getting harder for me to reply to morning posts because on top of struggling with waking up, it seems I'm also struggling to feel actually alive 😔 WTF is going on with that?
10 May
Hello, how's everyone doing this Sunday?
So I was quite down yesterday when I wrote my update. I was tempted to do some gardening.
I've not done any for years because it upsets me so much I fear it would cause a meltdown. Somehow, I was able to cope yesterday and I didn't feel all the horrible things I was afraid of. I got a good bit of weeding done and felt like I was moving more easily than expected. I thought my hip would protest after the pain it's given me recently.
I carried on for several hours and it was really quite uplifting. Maybe it's a sign of things starting to fall into place for me. I was completely exhausted afterwards, but I hope the bit of EMDR I've started is freeing up some headspace.
11 May
Hello lovely people, how's your Monday going?
I've started doing a couple of puzzles recently which is quite unusual. I like puzzles but for years I've felt too much like I don't have time because I couldn't manage doing the basics and general life stuff as well. Maybe this is (like the gardening on Saturday) something shifting to free up more space in my head. I do hope so.
Whatever that might be, I am having new difficulty with my routine of doing daily posts here and chatting to people I follow. I know nobody minds too much, but it feels like I'm missing out on the little bit of connection that is so good for me. It could be simply that the fatigue is ramping up but I have no idea how to cope with it.
12 May
Morning everybody, I hope you have some brightness in your day.
I had a call with the psychologist yesterday and also saw the osteopath. Both were helpful and felt positive.
Today I'm doing a family visit. Hope it doesn't end with nasty pain like last time. As I've been seen by the osteopath I should be alright.
13 May
Hello everybody, how are you doing today?
It's been very showery here. Grey and not fun but you can't complain about the rain when the ground is so dry.
I've had a good phone call with a wonderful friend and it felt really special. Having a call is fine when it's someone I want to talk to, but I wish the decision part wasn't so hard.
I've done some catching up here which was good, but seems so inadequate as the only thing I've done besides the phone call. We did have stuff going on in the morning and I was a bit distracted, I suppose.
14 May
Hello all, how has your Thursday been?
Sorry I've not managed to chat with more people today.
We've had more work being done here today. It was a bit noisy and distracting but I've managed to get a few things done, including a birthday card with some of my new paints.
Now I'm rather wiped out. I felt like going for a walk earlier but there was a lot of rain and we needed to be here for the work happening. Maybe if I'd got out I would have been a bit more lively.
15 May
I slept late this morning and now I can't get back on schedule. Feeling foggy and sleepy. Also back to trying something I'm doubtful about after taking a little break. I'm still not convinced.
Will probably go shopping (maybe walk there if it stays dry).
How're you doing today?
I slept late this morning and now I can't get back on schedule. Feeling foggy and sleepy. Also back to trying something I'm doubtful about after taking a little break. I'm still not convinced.
Will probably go shopping (maybe walk there if it stays dry).
How're you doing today?
16 May
Have a good Saturday everyone.
We have plans to go out today so I can't take my time and hang around here too long.
We are going to the auction viewing including some of my childhood items I've convinced myself it's time to move on. I don't know if I'm going to get upset, or if I'll be so interested in the other lots that I don't notice too much.
17 May
How's everyone doing? OK Sunday?
Today I have mostly been making my craft room and the spare room look like a bomb site (that is, worse than they were already) before hurriedly trying to get them back into some kind of order.
It has been hard work but I feel better for it.
On the bright side I seem to have stopped accumulating stuff that I don't have time for (not that I'm getting through what's already there).
There's a ridiculous amount of stuff for me to get under control. I'm not sure it's remotely possible.
18 May
How's it going this Monday?
I've had a big day. Autistic adults meeting was nice. Different people. All into Comicon. One of them said I look much younger than my age. A group leader complemented me on looking better than last time she saw me. I do honestly feel a little better and I wondered if I could be turning a corner.
Had a lovely lunch in the vegan cafe then walked home mostly along the riverside. Saw the muntjacs again, even closer to the houses this time.
I bathed and got changed before my osteopath appointment. That seemed to go well.
Just been catching up here. It's been a good day.
19 May
Morning everybody, how are you doing?
I'm not quite caught up from yesterday. It was a good day but now I'm back down to earth, I haven't quite found my feet again. Actually, still wondering how to process positivity after such a long dry spell with hardly any.
Two different people coming to the house today making me a bit on edge (at least they are the more friendly ones). Lots for me to do. It will be a struggle and I'm feeling hungry a couple of hours after breakfast. That may be a sign of low spoons, so forgive me not managing any individual chats. I have been reading as much as I can.
20 May
Hope Wednesday is behaving itself with you.
I think a good word for me today is befuddled. I forgot the time and (luckily my meeting was at home) people arrived while I was in a total daydream.
After that there was some excitement which I still haven't processed. I will try to unfuddle my poor old brain and hopefully get something done. After that I might feel I can share what happened.
My excitement earlier was about the sale of the items I put into an auction. Somebody wanted them and they went to the top of the estimate. They are four dolls dressed and in the likeness of the members of ABBA, still in their boxes since 1976.
I wish I could say "well done" to my mum for making such a good purchase (I believe they were a special offer) and possibly achieving about 100 times what she paid.
I always felt guilty for not being that interested in them, but it seems not playing with them was a good plan and helped me to not feel so "economically inactive" for a change!
It's not in the thousands or anything like that, but every little helps.
Thanks mum.
I wish I could say "well done" to my mum for making such a good purchase (I believe they were a special offer) and possibly achieving about 100 times what she paid.
I always felt guilty for not being that interested in them, but it seems not playing with them was a good plan and helped me to not feel so "economically inactive" for a change!
It's not in the thousands or anything like that, but every little helps.
Thanks mum.
21 May
How's your Thursday going lovely people?
I seem to have crashed, which is unexpected but maybe that's because of the unusual excitement yesterday? I think I woke up very early and didn't get back to sleep. I've put some washing out on the line and that might be all I've got in me for today (apart from maybe a snooze).
I have a big weekend with friends ahead and it will be lovely but I'm not at all ready.
AJ@autoperipatetikos I hope your day has gone well, Mary. Having people come to the house is stressful. Waiting for them to arrive is difficult as well.
@messingwithwires
Everything went fairly well, thank you. They were both on time so not too much waiting. I've been quite busy and I'm ready for a nice rest now.
Did you speak to your neighbour?
Everything went fairly well, thank you. They were both on time so not too much waiting. I've been quite busy and I'm ready for a nice rest now.
Did you speak to your neighbour?
@autoperipatetikos I’m glad it went fairly well. It sounds like a rest is definitely in order.
New roofer doesn’t call back when he says he will. Hoping to find out tomorrow; can then talk to next door.
(Feel bad as I picked a rogue 5 years ago and neighbours paid towards chimney repair that didn’t last. Ironically I don’t even use the chimneys.)
New roofer doesn’t call back when he says he will. Hoping to find out tomorrow; can then talk to next door.
(Feel bad as I picked a rogue 5 years ago and neighbours paid towards chimney repair that didn’t last. Ironically I don’t even use the chimneys.)
@autoperipatetikos Getting things done often results in a mess being made along the way. It sounds good overall.
Alex 
@autoperipatetikos Wishing you strength to have some of those childhood items get rehomed.
@AncTreat5358 @DoryTheFish
Thanks for your kind posts. You will be pleased to know I did not feel upset. We did overhear one of the team being quite enthusiastic about my lot (without him knowing I was listening). But it's all a bit of a gamble with auctions, so I'm not expecting anything astonishing.
Thanks for your kind posts. You will be pleased to know I did not feel upset. We did overhear one of the team being quite enthusiastic about my lot (without him knowing I was listening). But it's all a bit of a gamble with auctions, so I'm not expecting anything astonishing.
@autoperipatetikos @DoryTheFish Glad to hear you kept your poise! And congrats on there being interest in what you offered.
@AncTreat5358 Thanks Alex 😘
@autoperipatetikos I’m sure that most have been an emotional experience, Mary. Sometime we suddenly feel it’s time to do these things. I hope you’re okay.
@messingwithwires Thanks, how are you doing?
@autoperipatetikos I’ve started trying to get a few things done, including turning my old workshop/study back into a bedroom. After 30 years it’s quite a change. Finally got someone out to the roof after tolerating it for 5 years. So far it looks promising; they took photos showing clear problems. Fingers crossed… there will be some awkward conversations as it’s mostly involving chimneys shared with my attached neighbour.
@messingwithwires
Well done for getting things started with your new/old bedroom. And that's great that you've had the roof checked. It will be such a relief. I hope your neighbours aren't too difficult about it.
Well done for getting things started with your new/old bedroom. And that's great that you've had the roof checked. It will be such a relief. I hope your neighbours aren't too difficult about it.
@autoperipatetikos Thanks, Mary. I was sort of glad he didn't get back to me today about what he'd found, so I have more time to mentally prepare.
@messingwithwires I can't imagine why they would want to give you a hard time. I don't think that's really fair.
jessicaI hope the day was dry. I had strange weather here, proper sunshine and showers.
@jessica yes, we got some shopping on foot. Had the sunshine and showers more yesterday. Hope it's better tomorrow 🤞
I hope the day goes well 💜
@jessica Thanks, it seems like a nice sunny day. How are you? 😊
Turned out to be a nice day here!
I'm a bit mixed lately - been deep diving into a tech project, which has improved my mood, but I'm physically fatiguing easily, which is frustrating. I've had a couple of complete exhaustion crashes this past week.
@jessica I feel quite mixed too. It's so good when something feels like it's helping. But the fatigue seems to get harder and harder to manage.
I hope you can keep building up your mood
I hope you can keep building up your mood
Kevin Davy@autoperipatetikos
Amongst the many things we weren't taught, or often allowed, growing up, was being kind to ourselves and just enjoying the simple moments of joy that only we seem to see. Worth bearing in mind in this world that can often seem too dark.
Amongst the many things we weren't taught, or often allowed, growing up, was being kind to ourselves and just enjoying the simple moments of joy that only we seem to see. Worth bearing in mind in this world that can often seem too dark.
