What’s going on?!

I’m trying to work out why I feel so low, tired and drained. Could it be Autistic burnout? If I could concentrate long enough to read articles about burnout I might know. Actually, reading anything would be great, I’ve got a pile of books waiting to be read but I can’t concentrate long enough to do so. It could be the menopause – turns out that 2018 was not only the year I was diagnosed and started processing that but also the start of my menopause! Maybe it’s a combination, but there seems to be little to no research on autism, menopause and ageing so it’s unlikely I’ll get an answer.

Not sure how long I’ve been feeling like this but it predates my diagnosis and working that through hasn’t helped, nor has the menopause. Concentration seems like a thing of the past. When I’m not at work I can easily spend a lot of my time watching tv or playing games on my iPad because those require virtually no mental or physical effort. Everything else just seems like so much hard work and I feel little motivation. I have, however, recently begun going to the gym 5 times a week but only with a lot of discipline, planning and being organised (in 6 weeks I’ve only forgotten an item of work clothing once and had to dash home, a 20 mile round trip in the wrong direction, that’s pretty good!).

In trying to figure out what’s going on I’ve been reflecting on the last few years:

2015 – I turned 50 & wanted to challenge myself so signed up, with my wife, to cycle coast to coast across Costa Rica (500km) and raise money for Stonewall (we did it, it was incredibly hard and blisteringly hot but, with the benefit of hindsight, a brilliant experience); went on the Zipwire in North Wales and was absolutely terrified….then immediately wanted to do it again!

2016 to 2017 – Having taken on extra work to help cover a management colleague’s redundancy I spent much of the year believing it was likely some of my team would be made redundant then had to make a business case for those redundancies (including my own) in November 16; cycling holiday around Cuba, turns out it was more of a challenge than a holiday but another great experience; February 17 confirmation that the redundancies would happen and be wrapped up ‘in year’ so we’d be going in March and paid our notice; taking on a rescue puppy who is gorgeous but a handful, not that we’d change her; volunteering at a Farm Park, mucking out horses, donkeys, goats etc. out in the fresh air and getting lots of exercise; August, new job as Development Manager for a tiny third sector organisation, started out feeling like Tigger and keen to use my skills to help them improve their infrastructure and governance.

2018 – started the year feeling more like Eeyore in terms of work. Couldn’t seem to engage organisation in the work necessary to change, began to doubt my professional competence, tried to resign twice but was persuaded to stay and help them make the changes they knew they needed; after nearly 2 years of waiting, was invited for ASD assessment and diagnosed as Autistic – wasn’t really prepared for that; after a couple of months I realised I couldn’t help the Organisation I worked for and deal with the mess my head was becoming so finally resigned; started a 6 month dog training course (signed up before I realised how single minded my brain would become in terms of processing my diagnosis); started back at the gym; whilst studying, applied to join the Health Board staff bank (basically zero hours contracts, go when/where you’re needed), messed up the interview big time, berating myself for weeks afterwards; started doing a few hours admin support on ad hoc basis for a local third sector organisation whilst they recruited.

2019 – Applied to Health Board again for bank work, interviewed and appointed then waited for NHS bureaucracy to do its thing and was offered first placement 2 months later for 3 days a week; got my results for the dog training course, to my shock I graduated with distinction but hadn’t the confidence or support to do anything with that; published a blog looking back at my year since diagnosis, got lots of positive feedback; took an additional bank job, 1 day a week; excited to realise that the systems and processes in one of my jobs leave room for improvement which means I can get my teeth in to helping fix them and, shortly afterwards, learning that this area of work has become a Corporate priority; started the Transformation programme at my gym, 5 days a week;

Since April 2018, regardless of what else has been going on, my brain has spent a lot of its waking moments processing my diagnosis and trying to understand what it means for me. Until I went back on Amitriptyline, in May/June 19 as a migraine preventative, that meant a lot of time at night too. I guess if I’d been self aware of the real possibility of me being autistic then maybe the official diagnosis wouldn’t have been such a big deal. As it is, I was somehow oblivious.

My head has been full of ups and downs. Most of the time it’s working through things which sometimes makes sense and are ok, sometimes don’t and aren’t. In the darkest times it just feels like it would be easier – for me and everyone else – not to be here.

Not that this latter feeling is new. I recently found a few journal entries from 1990 to 1991 – I would have just turned 25 when it starts. It was hard to read and to realise that my younger self was so convinced that I felt different because I was gay when actually I was clearly an Autistic person who was simply desperate to make sense of life and how she fit in to it. It also references not wanting to be here and just confirms to me that I’ve always lived with these thoughts when things get difficult or I don’t know what to do. Weirdly that’s kind of reassuring (I’m still here after all!) and yet hard to acknowledge that those thoughts are a regular feature of my life. Over the last year I’ve seen multiple references to studies highlighting the high suicide rates among Autistic people, especially the late diagnosed and, although it is horrendous, it really doesn’t surprise me at all.

One thing I really would like to learn how to do is to turn the thoughts in my head into words that other people can hear. It is so frustrating to have a hive of activity in your head and yet, even when given the opportunity to talk to professionals, you just can’t articulate anything sensible or helpful. How much easier it could be to sort out miscommunications or to seek help if I could actually articulate what was going on in my head. I suppose I have to accept that will never happen because if I haven’t figured it out by now I’m not likely to, but that’s easier said than done.

Basically it feels like it’s been a pretty intense period and a lot to process. All I know at the moment is that I haven’t got things figured out yet!

I came across this article https://soniaboue.wordpress.com/2018/07/01/autism-masking-and-ageing-a-personal-view/ as I finished writing. There is a lot in here I can relate to and it provides thought provoking ideas to chew over.

3 thoughts on “What’s going on?!

  1. Sue you’ve done so much and none of it what I’d call easy, mostly in a time when autism wasn’t widely known about, let alone understood (as it still isn’t) so you should be proud of what you’ve achieved. (Cycling across a country on the other side of the Atlantic is a very big deal as far as I’m concerned, and that’s just one example) Being gay as well must have made your life more complicated than most. I’m not just dishing out compliments, I know you wouldn’t want that anyway, but you seem to belittle your achievements and I don’t know why. Give yourself permission to accept you’ve done some amazing things! When you say you’re unable to communicate what’s in your head, is that just verbally? Your written stuff is really clear, doesn’t that help? Sorry I’m not sure if you WANT any feedback and anyway I probably don’t know what I’m talking about, but I just felt I wanted to say what I’ve said. Keep on doing what you’re doing! 😊

    Liked by 2 people

    1. Thanks for this. Yes, I mean verbal communication, it’s just not easy to put things in to words when talking to someone. I guess I do tend to play down things I’ve achieved, should learn to give myself a break maybe!


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