I woke up late again and drifted quickly into self-criticism. I feel I have to sort this oversleeping (actually hypersomnia, as my sleep pattern is longer than it should be, not just shifted later in the day) and lack of energy, but I don’t know how, and I don’t know how I can work it out without knowing what is causing it: medication, autistic exhaustion (which in itself is not well-understood) or something else like avoidance. I’m not even remotely sure how much of it is a physical issue and how much an emotional one. But I feel it’s one of the main factors – arguably the main factor – holding back E and me from getting married.

One of the few things I took from Sara Gibbs’ autism memoir Drama Queen was the metaphor that if being neurotypical is like walking on a treadmill going at a walking pace, being autistic is like being on a treadmill going at a fast running pace, all the while being expected to keep up with the walking neurotypicals who don’t understand why you’re struggling to stay level with them. More than any other issue I have, I think of my energy issues here.

I had to do some shopping, which stopped me going for a (literal) run, although I’m not sure I would have had time anyway. I did walk quite briskly, so it was not a total failure in the exercise department.

I had hoped to finish the plan for my second novel today. In the event, I did about forty minutes of work on it, but still have a lot more to do, even though I’m deliberately not planning down to the last detail as my experience with my first novel is that things grow organically during the writing process (at least for me) and it’s better not to over-plan in advance. Writing seems very daunting, particularly if I want to actually get published and earn money from it. Then again, everything seems daunting: marriage, work, getting up on time, shul and community (see below).

I’m glad my parents are home tomorrow (albeit very late) as I’m feeling that I can’t take much more of living alone for now. I do feel quite depressed (and glad I haven’t completely come off my olanzapine) and stressed about additional housework and, well, everything. Everything just seems overwhelming and difficult at the moment. I just emailed the mental health charity that helped me years ago again to try to see if they can help me now with sleep/life skills, but I’m not sure if I’m still eligible.

***

My shul (synagogue) wants people to help with moving books and the like to our temporary premises and then on to our new premises later in the year (hopefully). Part of me would like to help, but I just feel completely disconnected from them at the moment. I’m scared of being asked about my wedding and I just feel that my time there is running out. I never really felt accepted the way I hoped, which is probably at least partly my own fault. The temporary premises are about twenty minutes from my house (rather than ten minutes for the current ones) and in what is probably going to be a small, cramped room and full of autistic “new experience” anxiety. Then when they (we?) move to the new premises, that’s also twenty minutes away, and hopefully by then I’ll have a clearer idea of when I’m getting married and probably moving somewhere else (E doesn’t really want to live around here).

I sometimes get to a point with something where I just feel, “This is over” and lose all motivation to do anything to keep it going and I feel that’s where I am with my shul. I liked their commitment to quiet davening (prayer) and sense of humour and perspective about frum life, but it obviously was not enough for me to feel accepted, given the generally more moderate-Haredi (ultra-Orthodox) outlook as well as my mental health and autism situation, not to mention being one of the few unmarried “older” people and the lack of interest in setting me up on dates as I expected/hoped (obviously not an issue now, but more of an issue a few years ago). My fear is that the social anxiety and autism will still be there in future shuls, and I’m already dreading going back to a shul where people talk in the davening (which is most Orthodox shuls, sadly).

***

Since finishing The Twilight Zone, and as E and I aren’t watching any Doctor Who together at the moment, I sped up my viewing of Twin Peaks. Unfortunately, I then hit the third season. The original Twin Peaks had charm, warmth, wit and strong characters. The third season has none of this, substituting semi-incoherent weirdness and long, aching, empty scenes, with occasional good bits that prevent me skipping it. The lack of incidental music makes the whole thing feel even stranger, like watching raw footage. However, I’m curious to re-watch to see if it makes more sense second-time around. So far the answer is yes, just about. And I recall that the final two episodes were pretty good, so I’m sticking with it for that.

However, the last couple of days I’ve been too down to want to watch this, so I decided to watch Doctor Who. As I want to watch good episodes of Doctor Who with E, I decided to watch something too awful to suggest watching with her, so — Silver Nemesis. It’s really not good at all. Maybe I should try to persuade E to restart watching good Doctor Who with me.

16 thoughts on “The Autism Treadmill

  1. I wish we could trade for a night! I would LOVE to sleep for 10 solid hours. Actually I need a few nights of those. I’m so exhausted. At best I get 3 good hours and 1-2 dozing hours. Last night I couldn’t fall asleep until 2am, and you’d think I’d sleep in later, right? Nope!

    Sorry your shul isn’t meeting your needs. I’ve been thinking of trying a reform one here that I had a nice experience at a couple times. I’m just so tired by Friday though…

    Liked by 1 person

  2. I wonder if you can come up with a sentence or two that will be your automatic reply to questions about when you’re getting married, perhaps with plans to then change the subject.

    I can relate to hating when people talk constantly in synagogue. It was quite a difference than my church experiences (which, of course, have their own major flaws). One year I was struggling to hear the words of the speaker during the high holidays because there was so much conversation going on around me–and all about unrelated things. Very frustrating.

    Have you considered consulting a sleep specialist and have a sleep study done? I wouldn’t take on so much responsibility as far as believing your hypersomnia being THE main thing holding you and E back from marriage. From what you’ve said, she has some significant anxiety issues, too.

    I hope today is better.

    Liked by 2 people

    1. I just say we haven’t booked it yet and leave it like that for now.

      I haven’t considered a sleep specialist. I don’t even know how I would get that done. E’s anxiety is significantly based around my sleep/energy issues.

      Thanks!

      Liked by 2 people

      1. That sounds like a good short line to say.

        As far as a sleep study goes, I would imagine you’d just go to your physician and tell him you’re having issues with fatigue and hypersomnia and are not sure why. Usually at that point (US, anyway) they recommend a sleep study. You basically go to a place where they put electrodes all over your head, and you sleep. They watch you and look for issues both in observing you and in looking at the data from the study. You could have a sleep disorder (like periodic limb movement or sleep apnea) and not even know it, and that would deeply affect your energy levels. Perhaps they could also discuss how autism may be impacting your energy levels. It would also show E that you’re trying you fix the issue, if it can be fixed.

        Liked by 2 people

        1. I did speak to a doctor recently about my energy levels, but I’m not sure if we really spoke about sleep. I guess it’s something else I could try. Unfortunately, seeing a doctor at the moment is still hard here because of COVID.

          Liked by 2 people

  3. I received a comment on one of my posts about how no Jewish community is a perfect fit. At the time, I wasn’t really in the headspace to hear it, but now, I can better appreciate it. No community is a perfect fit, but it should be possible to find a community that is a reasonably good fit, welcoming of you even if you don’t fit in perfectly, and just accept that there will be a gap between the community and the ideal (and yes, this is advice that I need to follow myself). There are probably certain deal-breakers you shouldn’t compromise on, and certain things that you could compromise on. It sounds silly, but for the community where people are talking during davening, could you wear ear plugs? Near me, one of the women started this bookmark campaign where if you put a certain colored bookmark in your siddur during davening, it was a visual cue that you wanted more quiet and concentration and people shouldn’t engage in conversation near you. Sounds silly, but it kind of worked generally to get people to be more respectful during services.

    Liked by 1 person

    1. You’re right that there isn’t a perfect fit community. For a while I thought this one was a good fit, but over the last year or so I’ve felt less and less comfortable, plus I’ve been aware that it’s really not the right place for E.

      I like the bookmark idea, although I’m not sure how well it would work if it was just me doing it. I hadn’t thought of wearing ear plugs. I think I would find it uncomfortable and would worry what people would think.

      Liked by 2 people

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