Save me from the nothing I've become!

How autistic perimenopause has caused my world to shrink

Evanescence belted from my car stereo this morning, as I drove myself and kids to get Mummy a blood test to check if the HRT is improving my levels. Yay, what an outing! I voice texted the title to myself and here we are. Inspiration obscured my logical thinking, and so I vomited this post up just for you. Actually, that’s not a great visual sorry.

It seems I took my pre-peri hormonal balance for granted, but how do you know to enjoy not feeling like shit when you don’t yet feel like shit? Is chronic shit a thing? Because that’s how I feel. Plus, IBS. Bleurgh.

When the extreme hormonal fluctuations began, so too did my incapacity to maintain my regular activities. I used to do a lot of things. I had energy to burn, I couldn’t sit still. Now I can’t move, and earlier today I almost burnt the house down simultaneously using the kettle and the air fryer. I am so rock and roll!

I am so tired, thus I have selected the trusty bullet point list adored by neurodivergents. Only each bullet point is at least one paragraph and I am too tired to edit it into an essay. I am aware of my imperfections and I only have so much capacity. Currently, that capacity level is below zero, so please forgive me. Perhaps one day I will have hours to come back and edit this into a tidy essay, but I have little hope of ever remembering. Please accept a photo gallery of my cats by way of apology.

A selection of photos of my cats Harry (bluepoint with grey face) and Toby (sealpoint with brown face). In a random array of places, many taken where the cats are not allowed such as on the extractor fan above the gas stove.

Has your world shrunk in your autistic perimenopause? Please share in the comments if you can relate 💕

So in what ways has my world shrunk as a result of autistic perimenopause? There are too many to list and, let’s face it, I can’t actually remember because it has absolutely screwed my memory capacity. But what follows are a few examples:

• I need to be close to a toilet at all times, this may be a symptom of perimenopause, a side effect of my HRT, or a cruel combination of the two. Either way, I became extremely limited physically a couple of years ago, when I started to bleed and didn’t stop. With the menstrual bleeding came constant cramping, back pain, chronic discomfort from pooling and flowing of blood. The smell, the flooding, the seeping - it was too much to bear. Sensory overload caused more meltdowns and shutdowns. At the same time, my bladder decided it no longer needed to function as it previously had, so I spent all my time needing to be in very close proximity with unnervingly regular trips to the toilet. Mopping up, changing undies. Trampolines became my nemesis, and I no longer cope with swimming. Not that I can swim, but I was having lessons. Frequent flooding (of the non-swimming variety) and general sensory overload put a stop to that. This has made my exercise options more limited, and taken away two ways fun I used to play and connect with my kids frequently. I can’t even look at the trampoline these days without peeing myself. And don’t talk to me about running, it’s just a “no”.

• I have very low self-esteem, and I believe I am incapable of writing. I cannot recall familiar words, and tail off mid sentence as I don’t know what I was even talking/writing about. It is embarrassing, frustrating and demoralising. (Fun fact: it has only been in my forties that I have developed some capacity to experience embarassment. How is that for asynchronous development?) I lack the focus, attention and diligence to edit my writing - so apologies for the typos. I struggle to bring myself to the page, to sit and type. In my head it is all too much of a demand, and autistic perimenopause has exacerbated my demand avoidance. I no longer experience a sense of achievement from completing a set task. The dopamine that used to fuel my achievements has burnt out. I suppose I am stream of conscious-ing depression here, as in I have no momentum to do the activities I previously enjoyed. Task initiation and completion are near impossible. My “get up and go” has not bothered to get up and go. Rather, it has wilted, shrivelled up and perished. Perhaps never to be seen again. I can’t tell you how often I am jealous of elderly people who are oozing energy and zest, while I sit feeling flat and spent. Aged 43. There is no justice.

• I am now exhausted *almost* all of the time. Not just “I hope I can take a nap this afternoon” tired, but “I need to pull over now or I am going to fall asleep behind the steering wheel killing myself and my family” tired. The sort of tired where you cancel plans for safety’s sake. The sort of tired where you are completely disengaged from everyone you love, and no longer have the energy to inaudibly murmur “for fuck sake” when asked for a snack, so you just blurt it out uncontrollably instead.

• I have lost the controllers to the family PlayStation. This happened a couple of years ago, when my working memory was at its absolute worst, yet I ironically still wanted to control my kids’ screentime. I have since all but abandoned that hope because I have no capacity to engage with anyone much at all, although I can still set up a mean model railway loop for my youngest in a short timeframe thanks to the ‘tism. The gaming controllers were put in a bag, I think, and then I hid the bag. A flawless plan as none of my family look inside a thing when looking for a thing. If it isn’t out in the open, they will not see it. Unfortunately, I don’t know which bag I put them in nor where I then put the aforementioned bag. I hope beyond all hope the bag didn’t end up in the bin, or in a charity shop donation pile, but in all likelihood, it’s long gone. It is hard trying to be radically accepting of myself in autistic perimenopause when I do something like that which will cost me hundreds of NZ dollars to replace.

• My memory recall was at its worst shortly after I graduated from New Zealand Comedy School. Actually, who am I kidding? It was happening at all the classes, happened at the graduation show in August 2022, and every show thereafter. My cohort and I were under strict instructions from our teacher - “If you turn up to graduation with notes for your set in your hands, I will make you wash it off”. “What if we get them tattooed on?” I joked. "I’ll make you wear gloves” a zero tolerance policy for note taking, noted. We were also told absolutely not to take our notes on stage, but how was anyone to know? I put mine in my pocket as a sort of comfort blanket. The MC called me up to the mic stand and I just about got through my opening line:

  “I have decided to live my life authentically. I am now openly… ginger”

  before I realised I had no recollection of the “tight five” minute set I had been rehearsing hourly for a fortnight. Autistic perimenopause was not on my radar back then, but it had already started ruining my life. I pulled my notes out of my pocket, stared down into the darkness of the crowd which I knew was there but couldn’t see with the spotlight dazzling me. The rest of the set involved me ad libbing, panicking about going off script, applause from the generously sympathetic crowd and trying to get back on to the page.

  “Erm, what’s my next bit? …*scripted joke*

  Oh hang on, spoiler alert: I’ve got ADHD … *checks notes*

  You might already know this, but I’ve got ADHD *applause and laughter*

  Erm hang on, just to prove it *checks notes* …

  Setup) I was recently diagnosed with ADHD. The most effective treatment for ADHD is to take stimulant medication

  Punchline) To help you remember to do really important things, like take your medication…

  Ad lib) I think I may have forgotten to take mine today…

  I have the video footage of this cringeworthy set should anyone wish to see it 🤦‍♀️

  I remember bawling apologetically to my peers and teacher in the green room after my five minute set (luckily I was last on before the interval). Finally, I thought, everyone has seen how utterly batshit crazy I am and will be sending social services to my house to take my children. Everyone reassured me that the audience enjoyed my performance, and that all was well. I had been so completely myself on stage, so comfortable, a really show pony! I continued performing sporadically in the following few months, but it all became increasingly depressing as I realised I had no memory recall, was too exhausted to drive the 50 kms home after the evening shows in Wellington, and was just overall incredibly dysregulated.

  I reached out to the community of female comedians online, and they really encouraged me to lean into ad libbing and improvisation. It took some time to process, but I came to the eventual realisation that I was frightened of going off script because all my life my verbal interactions have been scripted in my head in advance. The shame that comes from saying the “wrong” thing for late diagnosed autistics is overwhelming, and I had to stop performing altogether.

  My life has pretty much shrivelled in every possible way - and don’t get me started on my recessing hairline - but I need to get my kids to bed now so am signing off. I wish I had the capacity to voice record this but I am so tired. Time to crawl into bed with my kids and hopefully the cats will join me!

  Goodnight, all 💕