Letter from the North

A Normal week (for me) 11-Aug-2018

If only I could get plastered myself 🙂 

Sat 11-Aug-2018  

On the day they left, my son knocked a hole in the plaster in the annex, a spot where the plaster had lifted from the wall, and (he says in a self-satisfied, I told you so tone of voice) something I had warned Teresa would happen and we should fix it before a customer does. 

She didn’t, so now we will. All the lifted plaster was removed – an easy task as it was falling off, then Teresa “sized” the wall with diluted PVA glue. 

In the afternoon, using some ready mixed plaster I slopped some over the worst of the gaps, not worrying about getting the first coat perfect – a lesson I’ve learnt.  

Once dry I will sand down the high spots and fill the low spots. The rest of the plastering on that wall is rough and I can (only) do rough, so it should be fine, then Teresa will need to re-paint that section of wall. 

This was a good day fatigue wise, but I had top pace myself very carefully.

Sun 12-Aug-2018  

Woke around 4am and that was that for me, so not going to be a good day 

Tried to do some work on the frame for the blind in then annex but the fatigue was too much. 

I did too much yesterday, that is almost nothing by the standards of my pre-cancer days and paying the price today 🙁

Mon 13-Aug-2018  

At work in the office at home fighting Windows installations 🙁 . 

Made the decision to stop following the private Kidney Cancer Facebook group I am a member of. Its membership has grown to nearly 1000 and the signal to noise ratio has degraded to the point where there is very little Information and an awful lot of “good luck” and “I am so sorry”. I understand that Facebook is often used for that purpose but it’s of no help to me and seems to reduce all conversations to that level.  

For me, as an autistic, all that “social” chattering is exhausting and getting information is difficult because the people who used to add value (for me) don’t seem to contribute any longer and when I try to it seems to get lost in the social chatter. 

So, I no longer monitor the group, Teresa is still a member and will tell me if something comes up I need to take notice of (either for me or that I could help with) but otherwise, I’m out. 

Every place I have looked on Facebook for hard information either started out soft or became soft and it’s such a shame, I want to engage, but to share information, in terms of this miserable cancer to share symptoms and ask questions about them, to share treatment options, to learn from others experience and share my own if that helps others. Now, I can’t and I think that is a shame and in that particular group the loss of comments from people I respected would “seem” to indicate that I’m not alone. Oh well, it’s an imperfect world 🙁 . 

Tue 14-Aug-2018  

So exhausted, I crashed out at 8pm …  

Wed 15-Aug-2018  

…  and though I had (as l always have) multiple awake periods, they were mercifully short and I crawled out of bed around 7pm, it only took me 1/2hr to actually get out of the bed from sitting up! 

Thu 16-Aug-2018  

Finally got my “new” test system configured with Windows 7 and 10, it seems to boot incredibly slowly, but right now I can’t be bothered to explore any further – it works well enough! 

Fri 17-Aug-2018  

Tested the test system, fixed some bugs, did more work on looking at a MAC version of my code, otherwise I’m a total blank! 

Postscript 

The subject of fatigue will probably dominate over Poo for a while, the latter is still there and doing it’s thing, but I can manage it and so leave it out for the squeamish! Fatigue however is getting worse, worryingly so, it’s one of those side effects of the drugs that, at the moment, is very prominent, hopefully it will have it’s time in the limelight then calm down again. On the other hand if that’s what it takes to keep the cancer at bay then I’ll cope because staying alive beats fatigue every day 🙂 

The Bean, Pendeen, 20-Aug-2018 

 

 

6 Comments

  • Linda Camidge

    I don’t have autism, but still find anodyne and meaningless soft chat on Fb tiresome. It’s everywhere though – Channel 4 News is a case in point. So I’d say your perception is less about autism than about clarity of judgement

    • Bean

      I’d agree that the pervasiveness of “soft comment” is everywhere, however I’ve yet to meet an autistic that had any time for it but a lot of others who seem to thrive on it somehow, horses for courses.

      In any case I’ve tried to learn how to soften my blunt approach when it seems appropriate, all I ask is that people also learn to be blunt when someone like me prefers it, to me that seems fair, takes more than one sort of person to make a world.

      In my experience, it is an unfortunate reality that few “out” autistics (that is those that don’t feel they have to pretend to be “normal”) survive Facebook groups or “soft” social chitchat, me included.

      Bean

      • Linda Camidge

        Not “survive” it, as if it’s a mortal threat? Or just have better things to do with your time? “Survive” also suggests that not to be on Fb chat is not to exist… am I over-analysing this 🙂 ?

        • Bean

          It can be easier to discuss this sort of thing face to face (for me) :-), however, in broad brush strokes, the stress of social engagement, especially repeated failure, whether in person or online can be so great that yes it can actually be life and death and certainly psychologically damaging. Some autistics prefer not to socially engage for that very reason and for them avoiding such situations is not a great hardship, others of us do have a strong desire for social engagement and for us places like FB, can be easier than in person because we have the time to think and that time is important when you have processing delays. So, yes social media, …, can, in fact, be more important for us than the general population, so when it causes problems, it is not an insignificant problem. However social media is also lacking some of the social cues that some (but not all) of us might find helpful to understand what is happening and has social rules that we don’t know about and can’t deduce so it can also be more difficult than in person. To return to my original point, it is my experience and observation that there are more failures than successes in social media for autistics even in environments only used by autistics!

          Bean

          • Linda Camidge

            Thanks for clarifying. I hadn’t begun to appreciate the complexities.

  • Linda Camidge

    I don’t have autism, but still find anodyne and meaningless soft chat on Fb tiresome. It’s everywhere though – Channel 4 News is a case in point. So I’d say your perception is less about autism than about clarity of judgement

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