Published on 12, July, 2020
Hi all
I mentioned I might try to get something off my chest here. I'm a bit worried that I might go on too much or ramble, or get emotional, or probably worst of all, still not be understood. So I'll try to keep this first post a reasonable length. Although as I hope to explain, that may mean that I go on for ten pages.
Where to begin? And then where to go? Well, there's so much jumbled up, different ways of seeing things: focusorganisationsatisfactionselfdisciplineselfawarenesscuriosityheadacheplanningachievementmotivationintroversionrelectionattentiondepresionobsessionsleepmissingmeaningfatigueisolationlaziness
And that's just part of it. Maybe sleep, then. I'd said only a few months ago that my sleep was normal. But the last few weeks the pattern has been intending to get to bed 10-10.30 and read, often staying up past midnight, get to sleep immediately, wake up at 3am, can't get back to sleep again, feel very tired, mess around a bit trying to relax, microsleeps, try to snooze, get a few minutes, restless again, get absorbed in something online by the morning, then something else, still hoping to catch up on sleep and nodding off, put off what I was meaning to do because I'm not feeling energetic enough and I'm not really thinking about it as immersed in finding something out and digesting it, most of the day's suddenly gone, get frustrated, try to do one basic thing, intend to get to bed 10-10.30, repeat.
It seems that my brain doesn't really shut off, although I have tried meditation (running while just accepting sensations seems to work better). It always has to probe and assess and conclude and often comes up with sensible plans. But actually carrying out those plans can get put off for weeks or not happen at all. What's the point of a to-do list when I seem unable to force myself to get started? And sleep makes things worse. It's like the curiosity is there all the time, but any sensible motivation to do the washing or ring the bank or act on one of my ideas is much reduced. That's kind of expected when you're tired, but shouldn't the dratted mental processing give up as well? Can't I just watch a crap film? No, I just think about how crap it is (Sicario 2 not recommended: if you're interested wait for it on TV with subtitles).
So, is there anything I can do about the sleep? Could it be worse this time of year because of the early dawn? I'm not sure, I can't tell. Maybe I should get heavier drapes for my bedroom, but that's another thing I've been putting off, as has registering with a GP. Could it be depression causing early waking? Well, I don't currently feel anywhere near as depressed as I have, but then one of the main virtues of this diagnosis has been not feeling obliged to feel anything. It's autism meaning something affecting my ability to connect to people, but with main features being 'alexithymia' (not knowing what you're feeling) and poor 'executive function' (getting stuff done). It's not that I don't understand feelings, it's that unless very depressed I can override or ignore them and usually do. They're secondary to a rational understanding. This is why I have problems with 'How are you?', and maybe have problems just making friends by liking people, being fundamentally convinced I should really like everyone. It also makes it hard to make decisions. Given what someone else wants, or somehow getting committed to a task, I can work out how to do it (so it's not executive dysfunction in that respect, it's more 'autistic catatonia'). But faced with having to have a preference, I'm consumed by the future of the planet in millions of years. My usual tricks for decisions include: a quick pro-con, if I can think of two reasonable-sounding causes for action, I take a particular path; or I try to evaluate things ethically; or both; or I flip a coin. I also try to apply myself in whatever seems the right way at the moment - if an intervention is waiting to be made, I make it. Or not if something more important-seeming comes up. But that's not great for accomplishing a daily plan, or a life plan. Most people don't have such a thing as a life plan, I'm assured. Although wouldn't it be good to share dreams?
So one day this week I just didn't go into work. I was expecting myself to. It just didn't happen. I can't explain it, and people seem to know me so well they haven't disciplined me, or have their own ideas of the reason. Maybe I'm demotivated and need a new job. I may benefit from people around trying to motivate me, and am a bit adrift in life. They say the mind is a millstone, and when it has nothing to grind, it grinds itself. Well, I spend too long on the web on sites like this, and that provides constant grist, but what for? I know I need more meaningful real-world relationships and mutual collaborations. I think it's because of my alexithymia that firstly I can't explain my own actions, secondly I'm in the habit of believing I will find the motivation soon, so put things off. Sometimes I really try to force myself to not procrastinate and knuckle down, but somehow can't. It's a very frustrating block that I can see reasons to overcome, but just end up getting stressed over my internal conflict. Maybe alexithymia means I think I intend to do honourable or useful things, but really my motivation is just to sound off and eat pizza. But people assure me I'm not lazy - when I'm started on something I'll work 12 hours or more. I just can't predict what that will be. Is trying to force myself a bad thing, because if I fail I get into bad habits of failure? You'd think I might have learned all this being more than halfway through my life, a life that doesn't seem made by choice. A mind is a terrible thing to waste.
I think that will do for now.
Welcome to my world (I guess we can all say that, lol)
... only, you explain it so much better than me.
What helped me and changed all this for me? ~ accepting me.
Did that change all of this? ~ no, but by accepting myself, I accept all of this and I know that there’s simply nothing I can do about it, by myself. So I got help and now, when I’m in the thick of it all and I become aware that I’m simply in the thick of it all, I simply smile, remind myself I don’t have to figure this out, I have my support worker to help me do that so I don’t have to figure it out by myself, so for now, I can simply enjoy myself and I can discuss this with her when I see her, if I need to and I can get on with whatever seemingly mindless thing I’m doing, such as watching YouTube videos or chatting on here, avoiding (or as my psychiatrists says, self preserving) doing the things I don’t like doing such as dealing with bills etc.
I will say one thing though, that stood out for me after reading your post. You’ve got some very strong rules that you’re holding yourself up to. For example, ‘I should like everybody’.
I used to have this belief and when I was in India one time, I used to go for a cappuccino at a place I had found on the cliff tops, over looking the beach. It was an English guy and he did real capucinnos! Anyway, I used to sit with a Canadian guy, he was a tv/film producer and made really interesting documentary type out in the wilderness type programmes, but we never chatted about that, we chatted about all sorts of things, real things. I told him that I felt that I should like everybody and that this caused me problems and he gave me an explanation that changed all that.
He said people are like music. Some music you love and you know why you love it. Some you love but you don’t know why. Some music you clearly don’t like and some music you can take or leave and he said, these things often change, sometimes just with the weather. He said it’s ok not to like everybody. It doesn’t mean they’re unlikable. Just like the music we might not like one day. Even if we never like a certain type of music, it doesn’t make the music is bad or unlikable, it just means that it’s just not to our particular taste and that’s ok.
Anyway, since he told me that, I have never since felt like I had to like everybody and that has given me a great deal of ease and freedom that I never had before and over time, it opened me up to people that I do like and who’s company I do enjoy so now I can happily leave the rest, with love
It is said that somewhere close to 99% of the population are not living the life of their dreams or even a life that they really like, and the only reason for that, is that they don’t have life plans! Those that do, succeed in all their endeavours. Can you imagine a builder trying to build a house to the designers idea without having a plan? You’re right, the majority of people don’t have a life plan and the majority of people are living to somebody else’s life plan and often, pretty miserably.
It’s utterly impossible for me to create a life plan for me, for all the reasons and more that you described above. However, with the support of my autism worker, we are very slowly but surely, creating my life plan, and this has given me so much freedom, to simply enjoy myself. This still feels weird and wrong and like I should be doing something else but as Einstein or somebody once said, the definition of insanity is doing the same things over and over again and expecting different results. So I’m going with the different, to get different results, no matter how weird it feels, which means I’m going to watch dragon boat racing today, whatever that may be, at a local lake. I just got my message so that’s where I’ll be heading today. I’ve still got the phone calls to the energy supplier and other places to make and I’ve still got my little set targets for the week to achieve, but today I’m going to get out of the house and go and check out Dragon boat racing. These things will still be here when I get back and the world won’t stop if I don’t do them now or if don’t sit around stressing about not doing them and if I do something nice, who knows, I might get the inclination to face some of these things I’m avoiding. It’s not very likely but who knows, it could happen and if it doesn’t, the world still won’t end.
I did some writing last night to help me process the day and I wasn’t going to post it but I think I will as it might be of some benefit to you, so I’ll post it when I get back. As DC said, you probably, like me, just need some rest and time out.
Thank you, BlueRay.
My main question is how did you get your autism support worker? What qualifications or experience do they have? What is most helpful? Do they help motivate you? I want to be able to do things for myself, but have a current block about this and really could do with help setting goals I can believe in.
Yes, I have a few rules, but they're more like guidelines, sometimes rules of thumb to help get to good outcomes and help myself. Things like 'don't compare yourself to other people' and 'take every opportunity'. If I had gut feelings, or were aware of them, I might not need the rules. Probably I don't really like everybody, although I think I am easy to get on with. I'm sure there must have been times when there was something that drew me to a particular friend or they wouldn't be my friend, but often I can't get a grip on that feeling.
I wish rest were the answer. I've had a bit of being awake 4-7am, waking when it's dark and then being able to catch up on sleep a bit when it's actually light (with aid of a sleeping mask). Melatonin was an interesting suggestion from whoever suggested it, and I should enquire. I actually am going to bed a bit earlier as my motivation has dropped, but still have somewhat disturbed sleep and feel really sleepy and tired in the mornings. It's probably depression directly or indirectly at the root of the lack of energy.
Sorry to butt in here, but
Cassandro said:My main question is how did you get your autism support worker? What qualifications or experience do they have? What is most helpful? Do they help motivate you? I want to be able to do things for myself, but have a current block about this and really could do with help setting goals I can believe in.
I got my Austism Support Worker through Access to Work - a cost to the government of about £75 per session and I have two sessions a month (a total of three and a half hours a month). And most of the time she is very helpful. She works for an autism charity and although not autistic herself she tries to understand the problems I face and does understand that the essence of me, my autism, and my actions as a result thereof cannot be changed in any meaningful sense.
Which brings me tot the real point of dealing with the problems. There are two sets of people who need to accept what an autistic person is - the person themselves and everyone else. And believe me I have spent my whole life trying to change myself. It doesn't work. What happens is that it causes the sleepless nights, the depression, the anxiety, the trying to think things through, the 'acting' worthy of an academy award, the million and one thoughts going on at the same time.
And then others try to change my 'behaviour' as it is not construed as 'normal'. I do not hurt anyone deliberately, and would far rather be left on my own in most circumstances. Usually what upsets people is unconventional things - unconventional thinking, unconventional social behaviour, apparent rudeness (which I don't see at all) and failure to follow directions, unusual eating habits and other habits which are not socially acceptable (once again nothing that would get me arrested for!)
I try to accept 'me' although I am probably my own worse critic. And I have come to the conclusion that in most circumstances what I do and how I do them is no one elses business but mine. I am old enough to make my own mistakes, although I do have to be careful as I am extremely vulnerable at times to other people taking advantage of me. And if others accept me for what I am there is no problem.
The biggest problem as always is employment. In a lot of ways, the worst waste of time ever invented ... but then that once again is just the way I think!