I wrote this fun piece for Spectrum Women for Autism Acceptance Month in April. Not for the squeamish but I try to break down taboos around periods!
Yet again, The Silent Wave has written an amazing post that I identify so much with. If you don’t already follow her, best to get that sorted out pronto. 😉🌸
Discovering the truth about my Asperger’s/autistic identity was in itself a complete life game-changer. The discovery alone was its own gift, a head-nod from the universe or the cosmos or whatever that said, “you’ve worked hard enough; you’ve earned a little nudge, a little loving push, a little…secret decoder key that will suddenly clarify your entire life such that when you turn this key, your entire life will make sense to you.”
OK, cool. Glad we’ve established that. 🙂
If the discovery was that monumental a gift, just wait–there’s more! My Asperger’s/autism discovery and resulting identity had a ripple effect, a perpetual gift that just keeps giving and giving…
And that, my pretties, is that when I found my true identity, I also found my true community. The place–and the people–to which and to whom I finally feel like I belong.
Over the past several months, I’ve been attempting to…
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This past week was very full-on, as we spent a few days in London, which were brilliant but completely overwhelming for me. When you look at what we did, it was a fun time away:
- Fantastic Beasts and Where to Find Them at a “posh cinema” Tuesday night
- Harry Potter Studio Tour Wednesday morning/afternoon
- Public Service Broadcasting concert Wednesday night
We arrived on Tuesday, had lunch at Zizzi’s, then found our hotel and thought about what to do in the evening. I suggested going to see the new Harry Potter(-ish) film, Fantastic Beasts and Where to Find Them. As to be expected in London, standard cinema tickets were extortionately expensive, so to make it worth the extra money, we went to The Lounge at the Odeon, which was just down the road and on the corner of the road where our hotel was. The Lounge was for adults only (as in no children under 18 allowed), with dedicated bar service and food menu, as well as leather sofas which reclined and had footrests which elevated – and even a call button for service so you didn’t have to leave your seat during the film!! The film was fantastic and the viewing experience was top notch, as there were no extraneous noises from the other cinema-goers to irritate me. We walked back to our hotel and went to bed, ready for another full day ahead.
Wednesday morning, we went downstairs for breakfast. This is where my first wobble happened. Every hotel is different – some let you help yourself to a table and food, others want you to wait to be seated and verify you have pre-booked your breakfast. No one was stood by the door when we reached the breakfast room and when I enquired to an employee if we had to check in or just help ourselves, it became apparent that English was not her first language and she walked off to get someone else without saying a word (and just looking very nervous). Someone else came back with her and still did not seem to understand my question, so led us to a table then said, “you can help yourselves to the continental breakfast.” Why lead us to a table when we’re not going to sit down until we have food? Surely it made more sense to say, “yes, help yourselves and I’ll lead you to a table.” or something like that. So that frustrated me as it was a whole back-and-forth exchange that didn’t need to be so complicated. The breakfast offering wasn’t that great either – the milk for the cereal was nearly room temperature (yuck!), the croissants were bordering on stale, the apple I had was mushy and gross, and nothing else on offer appealed to me. We went back up to the room to prepare to set off for Watford Junction to get to the Harry Potter Studio Tour.
We knew that we had one change on our travels at Euston Station, but what we did not anticipate was the sheer volume of people trying to make it up the escalators – it was like herding cattle, so crowded and disorienting. When we finally made it into the station to look at the train departure boards, I was overwhelmed by everything around me and only paid attention to seeing “WATFORD JUNCTION” on the departure boards – not thinking twice about it being London Overground (which is what we got) vs London Midland (which is what we wanted). I thought that it shouldn’t be too much of an issue, or we could go change platforms, but Paul said that it would cost us to swipe our Oyster cards back out again, even though we haven’t gone anywhere, so we stayed and took the London Overground, which took nearly 45 minutes to get to Watford Junction, as it stopped at every. single. stop. along. the. way. [The London Midland service would have gotten us there in 20 minutes.] Thankfully, when we eventually arrived, the designated coach that runs directly between Watford Junction and the Studio Tour was still waiting by the kerb, so we dashed for it and got on board before it set off.
Queueing for entry to the Studio Tour wasn’t too terrible, though it was surprisingly crowded for a Wednesday morning (during term-time as well). Seeing everything on the tour was hampered by the other tourists/visitors getting in my way when I was trying to see something or snap a picture – I realise this sounds childish, but I would stand aside to let people take their photo before trying to take mine, but I kept being cut off and blocked and at times I genuinely wondered if I was invisible. 😦 We did enjoy going around and seeing all the authentic objects/props/sets from the films… it truly was magical. Lunch was expensive (as one would expect from a prime London tourist spot) and the Butterbeer was weird (Paul thought it tasted like butterscotch and Irn-Bru, and I thought the frothy foam top was a bit too sweet for my liking), but I’m glad we tried it. We showed great restraint in the gift shop at the end, only purchasing a Hogwarts crest fridge magnet and picking up our Collector’s Guide (which was purchased as part of our ticket package).
The London Midland service back to Euston was a lot quicker. We got back in plenty of time to grab a quick bite near the hotel, drop our Harry Potter stuff off and minimise our carried possessions to head off to the concert in Islington. When we changed from the Central to Victoria lines, the Tube was quite full and busy, but I just counted the number of stops until we made it to Highbury & Islington. When we arrived at the platform, the place was absolutely packed – unbeknownst to us, there was a home game for Arsenal and loads of punters were using the Underground to get to the match. It took several minutes to get through the throng of people – Paul stayed behind me with his hands on my hips, which made me feel safe and secure – and when we made it to the ground level near the exit, I needed to stand off to the side to catch my breath and de-stress a bit. I had never been in such a crowded situation like that where it was so closed-in (the last time we were in a similar situation was when we saw the Manic Street Preachers at Cardiff Castle and were trying to exit with the thousands of attendees through one of the two castle entryways, but at least it was out in the open).
The concert hall was easy to find and we were up in the balcony quite quick to secure good seats in the first row; Paul was very happy with our positioning in line with one of the speaker stacks. The comedian who was emceeing was a bit obnoxious (I didn’t laugh at any of his material), the supporting act Haiku Salut was a bit too avant-garde for my liking (though I didn’t exactly dislike their set either), comedian Ed Byrne was hilarious, and PSB’s set was brilliant. The one-off show was in benefit of Bowel Cancer UK and over £12,000 was raised.
The Tube was a fair bit quieter heading back to the hotel afterwards, as the football finished before the concert did.
Thursday morning breakfast was a bit of a palaver too, but this time it was just too crowded and too noisy for me – the ceilings were quite low, there were a lot of people, the tables were all quite close together, and all I could hear was silverware banging and clanging on plates and bowls – it was enough to drive me mad. We quickly ate and went back up to the room and had a little lie-down with the curtains drawn and one of the dim sidelights on. Paul gave me a cuddle and I got a bit weepy, but then I got cross with myself for getting weepy over something so trivial, but I was genuinely feeling so overwhelmed by all the extraneous sensory input over the last few days. After about 20 minutes (and an episode of BoJack Horseman on Netflix), I felt ready to pack up and check out of the hotel.
Sitting in the Victoria Coach Station departure lounge was the most irritating experience, to say the least. Every few seconds, the three-toned chime for an upcoming announcement would sound, followed by someone blowing into a microphone and saying “one two one two, testing”, followed again by the three-toned chime. Repeat that at least 25-30 times over the course of an hour. After about 5 minutes, I had to put earplugs in, but that didn’t help silence it completely, and I didn’t have my headphones or iPod to listen to music to drown it out, but it was slowly driving me mad. Ten minutes prior to boarding our coach, Paul asked for the ticket, which I handed him. He said, “the date is wrong.” He had asked me to change our departure time a few days before from 16:30 to 12:30, but National Express’s website clearly did not keep my selection of Thursday 24th as it changed to Tuesday 22nd – effectively, turning around 40 minutes after arriving in London to return home!! I naturally started to panic, but Paul said to keep cool. He handed the coach driver the paper with his thumb over the date – everything else from the departure time to the coach number matched – and the driver accepted it and welcomed us onto the coach!! I couldn’t believe it – thankfully the coach was less than half full, so it’s not like we were taking seats away from other travellers, but I was so grateful to not have to shell out extra money I didn’t have to amend it a second time. I am grateful for positive outcomes like this!! 🙂
Thursday evening when we got home, I was zonked. There was no way I had the energy to go to my usual choir session, so I instead went to dinner with Paul, his mother, and his uncle & aunt who were visiting from London. Not quite a traditional Thanksgiving dinner (which I no longer observe), but a nice meal out nonetheless. 🙂
Friday was a busy day at work catching up on all the things that had accumulated in my inbox while I was away, along with picking up a quite serious safeguarding concern with a senior officer. I was only too glad to be able to pack up at the end of the day and head home. That evening was a Big Sing event with my choir where about 250 participants from across the 5 choirs our leader oversees met in one large room in a small assembly hall complex. Whilst the sound we made was amazing, the PA had to be a bit louder than usual and the chatter of everyone around prior to starting was a bit much, so I put my earplugs in until my usual companions from my choir arrived and sat near me. I also got to disclose my Autism diagnosis to two of my three usual companions, as an opportunity has not easily presented itself since we started up again in September and I wasn’t quite sure how to share it. [Coincidentally, I saw this blog, Coming Out Autistic, posted today by Anonymously Autistic which I will also separately address in another post soon.] I got home much later than expected because the northbound motorway was shut and taking the parallel-running A-road took about 20 minutes longer, thanks to the increased lorry traffic. I went to bed and fell asleep pretty much straight away.
That brings us to Saturday morning. Just gone 6:00, I woke up needing the loo and had an absolutely pounding headache – most certainly a migraine. Did my business and went back into the bedroom, took an Imigran and climbed back into bed to go back to sleep. Woke up again just gone 9:30, no effect from the Imigran, this time feeling quite nauseated. Rolled over in bed, nausea got worse – a mad dash to the bathroom to be sick. I have never had this effect from a migraine before. Got back into bed and about half an hour or so later, tried rolling over again more gently this time – same again. Then got myself into a more comfortable stable position where I would try not to move and slept from about 10:10 to 13:40, when Paul came in to see if I wanted lunch and if I was still alive. My head was still killing me, but I wasn’t hungry. He offered to bring me a few Pringles to nibble on, which I gratefully accepted, along with my prescription sunglasses (as it was too bright for me to just wear my regular ones without excruciating sensitivity). After about 10-15 minutes, I thought I’d try going downstairs for a bit, hoping that being vertical and out of the bedroom might help, but I only lasted about 20 minutes before I had to retreat back to bed for another two and a half hours. By 16:40 when I woke up again, I could not detect a residual headache. I slowly sat up, fully expecting to be hit with it again, but I wasn’t. I went downstairs with my regular glasses on and felt – dare I say it – fine. We managed to keep our plans for the evening with some friends (as I had to postpone my plans with my cousin during the day for obvious reasons) which I was fully expecting to have had to cancel. After having a bit to eat and a shower, I felt like my usual self again and couldn’t believe I had been laid out by that migraine for so much of the day.
On reflection, I think this was a classic case of Aspie Burnout. I have seen this a couple of times floating around on the internet, but this best explains the migraine from hell. I have never had one make me physically ill before – and I hope to never have one like that again – but it clearly was my body & mind’s way of saying, “STOP. Just stop what you’re doing and rest.” I cannot remember the last time I slept that long, but I clearly needed it; I was even able to fall asleep without issue after we got home from our friends’ house on Saturday night.
As a bit of supplemental reading, please check out this post from Planet Autism Blog: Aspie Burnout, which also references The Spoon Theory, another good way to look at what I experienced. I hope by sharing my experiences, others will be able to read them and say, “Yeah! I had that too!” 🌸
After a cognitively exhausting two weeks, coming across this has been a relief. I am “my own worst enemy” and even though many people around me say that I need to not be so hard on myself, I recognise that I really need to work on the “being kinder to myself” bit and the “explaining myself in a Spoonie context” bit. 🌸
(To be clear, when I write words like “I ‘have'” and “people ‘with'”, I’m not trying to advocate or emphasize a person-first viewpoint. Truthfully, I’m very much a proponent of identity-first language; I simply title my posts the way I do (and occasionally use those phrases in the text of the post) to make this blog and its posts more search-engine-friendly, in order to reach–and hopefully help–more people, because they’ll likely use person-first search strings. OK, with that said, moving forward…)
The last seven-plus months have been a complete game-changer for me (and at least a few others that I know of). The learning curve has been steep at times, but all the neat positive and encouraging resources, authors, blogs, social media accounts, social media groups, and internet forums out there have all lubricated the uphill climb for me, making for a much easier ascent through the learning process.
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I have always had sensory sensitivities but never knew that was what they were called; I always felt like others thought I was just being dramatic, so I rarely said anything. It’s nice, in a way, to have these sensory differences acknowledged. 🌸
I’m not sure if this is the case for anyone else but the older I get, the worse my sensory sensitivities are. I used to be able to eat almost anything and it all tasted good and had a texture which didn’t revolt me. Now I am anxious about going to restaurants in case they have nothing I can happily eat. I eat exactly the same dish every night unless I get take away, in which case I usually order the same dish! (Except for pizza. I think it’s pretty hard to make pizza horrible). To the horror of my vegetarian, vegan and health conscious friends, the things I am able to eat mostly come from the meat group or the sugar group! I am only 42 so worry that if I get old I might only have one thing I can eat!
I also have an increasingly heightened sense…
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