Mary Starbuck3 January
Hope your Saturday is good!
We have booked a trip to celebrate what would have been my dad's 100th birthday in February. Inspired by a TV programme we watched a few weeks back - the Nordic Train at Christmas. My dad loved trains. I am very taken with the idea of many hours watching the beautiful glaciers, forests and mountains pass by between Bergen and Oslo, from a seat on the Bergensbanen where I can conserve spoons. I know it will be challenging because everything is such a struggle for me lately, but this is only going to come around once!
Back to reality now though and the time has come for putting away the decorations so that's making me sad but I just want it to be over and done.
Link to the nordic train programme:
https://www.channel4.com/programmes/nordic-train-at-christmas
4 January
Hope you're having a good weekend. It's a good bright day here.
I worked until late yesterday on packing away decorations but I seem to have more left to do than I ever have in previous years.
I have an important appointment tomorrow. I haven't been able to prepare. It's starting to seem like when I'm talking with therapists or doctors I can no longer answer questions or visualise and conceptualise what I want to tell them. That might be more about my problems being harder to identify and express than my ability to do so. Or maybe my declining energy is the issue. I'm a bit afraid this means I can't actually access talking therapy now.
Hope you're having a good weekend. It's a good bright day here.
I worked until late yesterday on packing away decorations but I seem to have more left to do than I ever have in previous years.
I have an important appointment tomorrow. I haven't been able to prepare. It's starting to seem like when I'm talking with therapists or doctors I can no longer answer questions or visualise and conceptualise what I want to tell them. That might be more about my problems being harder to identify and express than my ability to do so. Or maybe my declining energy is the issue. I'm a bit afraid this means I can't actually access talking therapy now.
5 January
Hello, how are you doing today?
I have crashed. I don't feel I've done anything to deserve it. Things have been stressful but not that bad. Cleaning this morning started late and ran nearly right up to my psychology appointment. I had been worried about not preparing but it turned out OK. Right after that my husband suggested walking to the supermarket. I said yes, but really didn't feel like it. I'm glad I got out despite the snow. I wasn't too cold. After getting back I'm almost dead on my feet. I'll have to catch up again tomorrow.
Hello, how are you doing today?
I have crashed. I don't feel I've done anything to deserve it. Things have been stressful but not that bad. Cleaning this morning started late and ran nearly right up to my psychology appointment. I had been worried about not preparing but it turned out OK. Right after that my husband suggested walking to the supermarket. I said yes, but really didn't feel like it. I'm glad I got out despite the snow. I wasn't too cold. After getting back I'm almost dead on my feet. I'll have to catch up again tomorrow.
6 January
How's it going with the snow or cold today?
I'm struggling with how hard my appointment was yesterday. The doctor was very kind and supportive but I just didn't have the spoons. There were a couple of hopeful bits, such as he's going to ask among his colleagues if there is a psychiatrist who might help me with specific symptoms and conditions whilst also being sufficiently sensitive about my autistic needs. It was useful to hear him say my last employment must have been hell (it was; all 11 years of it). Most people I talk to about it don't have any opinions or comments and I wonder if it's not very easy for them to get why it was so awful. I have quite a bit still to do updating his working document. I'm afraid I might not manage it.
We have the funeral on Friday involving a 3 night stay and then a family member coming back to stay with us. I couldn't refuse, but very much needed to 😞
How's it going with the snow or cold today?
I'm struggling with how hard my appointment was yesterday. The doctor was very kind and supportive but I just didn't have the spoons. There were a couple of hopeful bits, such as he's going to ask among his colleagues if there is a psychiatrist who might help me with specific symptoms and conditions whilst also being sufficiently sensitive about my autistic needs. It was useful to hear him say my last employment must have been hell (it was; all 11 years of it). Most people I talk to about it don't have any opinions or comments and I wonder if it's not very easy for them to get why it was so awful. I have quite a bit still to do updating his working document. I'm afraid I might not manage it.
We have the funeral on Friday involving a 3 night stay and then a family member coming back to stay with us. I couldn't refuse, but very much needed to 😞
9 January
I hope everyone is doing OK in the storm. I'm sorry I couldn't check properly yesterday while I was travelling and then had a very difficult time in a particular social situation. Today it's the funeral, so I won't be around much. I am grateful that we are in a place that should miss the worst of the bad weather, although the cold and rain will be enough. I hope to catch up tomorrow.
I hope everyone is doing OK in the storm. I'm sorry I couldn't check properly yesterday while I was travelling and then had a very difficult time in a particular social situation. Today it's the funeral, so I won't be around much. I am grateful that we are in a place that should miss the worst of the bad weather, although the cold and rain will be enough. I hope to catch up tomorrow.
10 January
Hope your weekends are going OK.
Yesterday went as well as it could have done, but I was so tired by the end of the day. Today I'm staying in our room leaving the family to do whatever it is they do together. I have snacks and the bar is open for coffee or any other drinks I might need. I might have a look round outside, although I don't have walking boots. My first view this morning was of a chicken having a check round the carpark. There was a sprinkle of snow but it has gone now.
I do need to to some work on a thing for a doctor so must keep a bit focused.
Hope your weekends are going OK.
Yesterday went as well as it could have done, but I was so tired by the end of the day. Today I'm staying in our room leaving the family to do whatever it is they do together. I have snacks and the bar is open for coffee or any other drinks I might need. I might have a look round outside, although I don't have walking boots. My first view this morning was of a chicken having a check round the carpark. There was a sprinkle of snow but it has gone now.
I do need to to some work on a thing for a doctor so must keep a bit focused.
11 January
Hello everybody, I hope things are going as well as possible.
We have a long (3+ hours) drive home bringing a relative to stay. It is good to see him, but I wish I was going to be on my own sooner. It's a fairly quiet route for traffic so I'm hoping to not feel too wiped out afterwards.
There has been a bit of snow, but it's reasonably comfortable temperature-wise (apart from my feet won't warm up).
Hello everybody, I hope things are going as well as possible.
We have a long (3+ hours) drive home bringing a relative to stay. It is good to see him, but I wish I was going to be on my own sooner. It's a fairly quiet route for traffic so I'm hoping to not feel too wiped out afterwards.
There has been a bit of snow, but it's reasonably comfortable temperature-wise (apart from my feet won't warm up).
12 January
Morning, I hope Monday is being kind to you all.
I am very foggy and struggling with having a guest. Also have lots to be done. I'll try a second coffee.
Morning, I hope Monday is being kind to you all.
I am very foggy and struggling with having a guest. Also have lots to be done. I'll try a second coffee.
13 January
Morning all, how is Tuesday where you are?
It's wet and dull here. There's also fog but that is in my brain. Just waiting until I can get back to the few little shreds of routine I have left. Not long now.
Morning all, how is Tuesday where you are?
It's wet and dull here. There's also fog but that is in my brain. Just waiting until I can get back to the few little shreds of routine I have left. Not long now.
14 January
Hope you're all having a good Wednesday.
Yesterday was a little awkward, but our guest has left us and I also got to do a visit which went well. I managed some laundry but it turned into a late finish. Had to get a couple of things done this morning but now I'm focusing more on getting back into routine. I am struggling very much with fatigue and brainfog. I would be happier if my brain felt like it was working, but I'm afraid it's just not. Been mindlessly scrolling with hardly any interaction. I will try to do something more constructive in real life to see if that helps to keep me from falling asleep.
Hope you're all having a good Wednesday.
Yesterday was a little awkward, but our guest has left us and I also got to do a visit which went well. I managed some laundry but it turned into a late finish. Had to get a couple of things done this morning but now I'm focusing more on getting back into routine. I am struggling very much with fatigue and brainfog. I would be happier if my brain felt like it was working, but I'm afraid it's just not. Been mindlessly scrolling with hardly any interaction. I will try to do something more constructive in real life to see if that helps to keep me from falling asleep.
15 January
Happy Thursday...
I'm really struggling today with being alert and attentive. Apologies for hardly interacting.
Last night I felt a new kind of tired, so I'm not sure what's going on. I had been working fairly hard, but nothing unusual.
Happy Thursday...
I'm really struggling today with being alert and attentive. Apologies for hardly interacting.
Last night I felt a new kind of tired, so I'm not sure what's going on. I had been working fairly hard, but nothing unusual.
18 January
Hi, has everybody had an ok weekend?
I've been having a difficult time and when I have been on Mastodon I've been feeling like I'm not good enough. Also been working quite hard. I just fell asleep.
Hi, has everybody had an ok weekend?
I've been having a difficult time and when I have been on Mastodon I've been feeling like I'm not good enough. Also been working quite hard. I just fell asleep.
19 January
How are you doing this Monday?
I've been to the local autistic adults meeting. There were more people today. I have mixed feelings about that. One of them is really interesting and I'm always glad to get to know people who could potentially be friends (I'm not thinking that would actually happen). On the down side, I wish it hadn't turned into a female group. That was partly by chance, but some of them do prefer it that way.
I got back home, had a quick lunch, then it was time for a call with the psychologist. It felt helpful.
While I was having a hard time yesterday, I did manage to scare myself into tidying up a little bit. This is quite an achievement which has given me a boost. It's about time something did.
How are you doing this Monday?
I've been to the local autistic adults meeting. There were more people today. I have mixed feelings about that. One of them is really interesting and I'm always glad to get to know people who could potentially be friends (I'm not thinking that would actually happen). On the down side, I wish it hadn't turned into a female group. That was partly by chance, but some of them do prefer it that way.
I got back home, had a quick lunch, then it was time for a call with the psychologist. It felt helpful.
While I was having a hard time yesterday, I did manage to scare myself into tidying up a little bit. This is quite an achievement which has given me a boost. It's about time something did.
20 January
Anyone with chronic illness, how helpful is the "use it or lose it" idea?
It was suggested to me (years ago) that I had lost some of my ability that way after getting my autism diagnosis and then burning out. I was off sick from work and already had Chronic Fatigue Syndrome diagnosis.
I thought what I understood was that rest was essential to recovery. I didn't know how to keep "using it" at the same time as resting. I did indeed seem to "lose it" which felt very, very unfair. Several years have passed and I've been feeling like my decline appears to doctors/most people to be my fault. But I'm wondering now if "use it or lose it" was just confusing. I'm not sure I really understand what it means for me.
In the call with the psychologist yesterday, he suggested to me that I stop doing a specific task which may not be necessary. I am going to try that and see how I go, but I just started wondering if the "use it or lose it" in an autistic context refers to motivation. The task in question is something I have been motivated to do as a routine thing. I certainly feel terrified of losing that motivation.
Maybe if I lose motivation to do something unnecessary, the destabilising effect will be offset by getting back the time or energy I would have used on it. But I'm really struggling with losing my identity just now. And I feel a lot of shame around giving up on something I've held on to all my adult life.
I'd almost forgotten about motivation. That may be because I tend to focus more on whether I have the energy or not. I have been very upset that professionals often pick on what they see as my deficit in motivation. I don't get asked what I think.
I'm really afraid that if I stop doing this activity, I will lose even more than I have already, and I'm not sure I will gain enough to make it worth it. It's only ironing. I don't do it regularly enough that I feel I could plan to do anything more helpful instead.
Thanks for reading
Anyone with chronic illness, how helpful is the "use it or lose it" idea?
It was suggested to me (years ago) that I had lost some of my ability that way after getting my autism diagnosis and then burning out. I was off sick from work and already had Chronic Fatigue Syndrome diagnosis.
I thought what I understood was that rest was essential to recovery. I didn't know how to keep "using it" at the same time as resting. I did indeed seem to "lose it" which felt very, very unfair. Several years have passed and I've been feeling like my decline appears to doctors/most people to be my fault. But I'm wondering now if "use it or lose it" was just confusing. I'm not sure I really understand what it means for me.
In the call with the psychologist yesterday, he suggested to me that I stop doing a specific task which may not be necessary. I am going to try that and see how I go, but I just started wondering if the "use it or lose it" in an autistic context refers to motivation. The task in question is something I have been motivated to do as a routine thing. I certainly feel terrified of losing that motivation.
Maybe if I lose motivation to do something unnecessary, the destabilising effect will be offset by getting back the time or energy I would have used on it. But I'm really struggling with losing my identity just now. And I feel a lot of shame around giving up on something I've held on to all my adult life.
I'd almost forgotten about motivation. That may be because I tend to focus more on whether I have the energy or not. I have been very upset that professionals often pick on what they see as my deficit in motivation. I don't get asked what I think.
I'm really afraid that if I stop doing this activity, I will lose even more than I have already, and I'm not sure I will gain enough to make it worth it. It's only ironing. I don't do it regularly enough that I feel I could plan to do anything more helpful instead.
Thanks for reading
21 January
How are you doing today? Hope you're feeling OK.
Yesterday was pretty good. Asking for help here and finding that there was such a strong response was very encouraging. Knowing that some of you feel the topic is worth spending time on helps me so much. It used a big chunk of my energy too and I'm noting that I need to watch out for losing track when I get involved.
Today I've been trying to communicate about goods or services that have not been delivered and it's grinding me down. I've not even got to the hard bit yet. It has taught me that having to deal with admin systems (as they are right now) detracts from the benefits of what any company has sold me. I'm more likely to just not bother in future (or be prepared to forget about being disappointed).
How are you doing today? Hope you're feeling OK.
Yesterday was pretty good. Asking for help here and finding that there was such a strong response was very encouraging. Knowing that some of you feel the topic is worth spending time on helps me so much. It used a big chunk of my energy too and I'm noting that I need to watch out for losing track when I get involved.
Today I've been trying to communicate about goods or services that have not been delivered and it's grinding me down. I've not even got to the hard bit yet. It has taught me that having to deal with admin systems (as they are right now) detracts from the benefits of what any company has sold me. I'm more likely to just not bother in future (or be prepared to forget about being disappointed).
23 January
I hate doing this but I've been very hurriedly trying to look at all the posts I missed yesterday and I'm afraid I'm not going to do it properly.
Please, please tell me if there's anything you can share that I've not seen.
Yesterday was strange. I had a good experience helping someone with a spreadsheet and that made me feel not as redundant and useless as I feared.
Then (prompted by a notification from someone I don't know) I ventured into pottering about with family history. It's been years since last time, which I feel sad about, but it also means there's new stuff like the 1921 census. I was so excited to find a couple of bits of info on the husband of a great grandmother who before had been troublingly mysterious.
Now I'm curious about why there was no memory passed down in the family that he had a specific accent (or maybe he hid it well). Perhaps my great granny was afraid he would not be accepted if she revealed where he came from. Or maybe it's something else, but I have lots of lines of enquiry to follow up now. I'm just hoping to find a picture of him, and to see if there are any family members still around that remember anything about the connection.
It felt astonishingly good. For me, it might be a bit like the fun of gaming, where there's an alternative reality I can live and breathe. It worries me, though, each time I get into it, that I have so little control or management of losing myself in the rabbit hole, or even being capable of initiating the attention without the external prompt. I also fear neglecting the rest of my life.
But.
It was a brilliant day which, comfortingly, didn't involve too much compromise or masking on my part. I had forgotten that was possible.
I hate doing this but I've been very hurriedly trying to look at all the posts I missed yesterday and I'm afraid I'm not going to do it properly.
Please, please tell me if there's anything you can share that I've not seen.
Yesterday was strange. I had a good experience helping someone with a spreadsheet and that made me feel not as redundant and useless as I feared.
Then (prompted by a notification from someone I don't know) I ventured into pottering about with family history. It's been years since last time, which I feel sad about, but it also means there's new stuff like the 1921 census. I was so excited to find a couple of bits of info on the husband of a great grandmother who before had been troublingly mysterious.
Now I'm curious about why there was no memory passed down in the family that he had a specific accent (or maybe he hid it well). Perhaps my great granny was afraid he would not be accepted if she revealed where he came from. Or maybe it's something else, but I have lots of lines of enquiry to follow up now. I'm just hoping to find a picture of him, and to see if there are any family members still around that remember anything about the connection.
It felt astonishingly good. For me, it might be a bit like the fun of gaming, where there's an alternative reality I can live and breathe. It worries me, though, each time I get into it, that I have so little control or management of losing myself in the rabbit hole, or even being capable of initiating the attention without the external prompt. I also fear neglecting the rest of my life.
But.
It was a brilliant day which, comfortingly, didn't involve too much compromise or masking on my part. I had forgotten that was possible.
25 January
Sorry for missing so much again. How's the weekend been going?
Yesterday my morning was fairly positive but I started feeling very foggy after going for a short walk and doing some laundry.
After lunch I decided to try some family tree work to see what happened with the foggy feeling. I think my excitement about poking around in the past is enough to push through the fog. I can perhaps harness this more carefully in future, but yesterday I didn't get anything else done. I totally got sucked in and didn't see what was happening. Hence no updates and I didn't catch up with anyone.
I'm back in that place again where I'm sick of being out of sync and unable to catch up. I never start the day with unrealistic expectations, but if very little is still too much, then shrinking my life to fit my spoons will soon take me below a level that makes any sense.
I've been for a short walk again this morning. I'm pleased with that, but feel like I could do with an afternoon of just being comfortable to follow it up.
Sorry for missing so much again. How's the weekend been going?
Yesterday my morning was fairly positive but I started feeling very foggy after going for a short walk and doing some laundry.
After lunch I decided to try some family tree work to see what happened with the foggy feeling. I think my excitement about poking around in the past is enough to push through the fog. I can perhaps harness this more carefully in future, but yesterday I didn't get anything else done. I totally got sucked in and didn't see what was happening. Hence no updates and I didn't catch up with anyone.
I'm back in that place again where I'm sick of being out of sync and unable to catch up. I never start the day with unrealistic expectations, but if very little is still too much, then shrinking my life to fit my spoons will soon take me below a level that makes any sense.
I've been for a short walk again this morning. I'm pleased with that, but feel like I could do with an afternoon of just being comfortable to follow it up.
26 January
Hello, how are you doing?
I've been busy with getting ready for cleaning being done. At least it's not clashing with other things this time.
Still working on catching up, so I'm going to get on with that and not try to think of anything more interesting to say.
Hello, how are you doing?
I've been busy with getting ready for cleaning being done. At least it's not clashing with other things this time.
Still working on catching up, so I'm going to get on with that and not try to think of anything more interesting to say.
27 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.
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).
Samantha Rose 🌹@autoperipatetikos Some days are like that. Taking a break, from here and other things, is OK 💜 - though I do know that's sometimes easier said than done unfortunately.
@samantha Thanks for your thoughts. Yes, it was a bit of a shock that my usual way of getting through things was not going to do it today. I will try to concentrate on the glimpse of sun outside.
I was looking at your post about the waiting list 😔 I couldn't think what to say
I was looking at your post about the waiting list 😔 I couldn't think what to say