2 January
Happy Friday everyone!
Hope you're keeping warm and/or enjoying the snow. I had to put a blanket over my legs just now. I'm not going to try putting anything else into words today, because I need to do some real life-ing, which is already a bit late at almost 3pm.

3 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.

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.

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 😞

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.

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.

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).

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.

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.

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.

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.

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.

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.

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 

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).

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.

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.

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.

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.

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.

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.

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.

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.