We have been away for a couple of days.
Back in October, when the hot water broke at home and we had a lot of trouble getting it fixed (his social anxiety, my unreliability of words, difficulty obtaining a part, and so on) we eventually gave up on the flat and checked into a hotel for a night. In order to be sure of getting a room with a bath we booked a better than average room, and it was an absolute idyll. I spent most of the time in the bath and the rest of the time filling in questionnaires for the autism assessment service!
We don’t really do Christmas presents, aside from a few books and things we get from one or two folks, and we never buy each other anything for either Christmas or birthdays. We just decided it wasn’t our thing so decided not to do it. However, a few of our relatives sent us a bit of money with the intention that we should treat ourselves, so we decided to return to the idyllic hotel for a couple of nights.
Why is it idyllic? Obviously, last October it had the attraction of hot running water, which we didn’t have at home. But even when its hot water status is the same as at home it’s still pretty lovely. First off, the room is around two thirds the size of our entire flat, but without all the stuff crammed in, so it’s gloriously spacious. The bed is also big enough that neither of us has to hang our legs off the side and it is long enough that our feet don’t hang off the end. Second, the end rooms don’t adjoin other rooms. At home we are surrounded by neighbours – we can hear them talking, turning light switches on and off, opening and closing doors, and so on. In the hotel we have peace and quiet. Third, it is in a town centre, with coffee and a good selection of food within very easy walking distance. That means my husband can fetch food and bring it back to the room so I can enjoy the coffee I like and food I like without having to cope with being in a restaurant surrounded by other people. At the current time, when my sensory system is in this crazy state, that’s really valuable.
It’s also possible for me to go out and walk round the town for short bursts and then get back to the room quickly to recover if needed. And I’ve used the trip to start to find out what I can manage to do and what I struggle with.
For years, when we’ve stayed in hotels in town centres, we’ve gone out to explore the local area. We’ve see shops and wandered round them. We’ve browsed all sorts of things, taking an interest in whatever was around. We are both physically fit enough to walk for quite some time, so can easily spend an entertaining afternoon ambling round a town centre. Then, quite often, we’ve brought food back to the hotel room to eat it.
Only I’ve frequently returned to the room in a state of collapse. I’ve been able to do little more than collapse onto the bed and lie there, feeling utterly terrible.
And, on top of that, my hungry husband has been desperate to eat, and I have literally turned green when he produced food, and he’s had to stop eating, because I simply can’t cope with it.
It usually takes several hours of lying down before I start to feel OK again.
But now I have new information.
So we are adapting our behaviour.
On the day we arrived at the hotel we needed to get some lunch, and I was keen to get out and get some air – being stuck indoors for vast amounts of time really isn’t that much fun. So we went out, we walked round. We decided what to have for lunch, but where we would have gone browsing round the shops in the past, we didn’t. We stayed outdoors, away from the toxic lights. Yes, there was a lot of input from people, though I was in dark sunglasses, which helped.
We didn’t push it. At all. Not on the first day. No “pushing on through”, none of that “steely determination” that is so admired by so much of society these days. I bought a box of heavily reduced Christmas chocolates from a reasonably empty shop. We then went to the place next door to get takeaway sushi to take back to the hotel room. I stood and twirled my fingers at a fridge full of fish before having the exact same thing that I always do. My husband sensed I was nearing my limit. So he took the stuff to the checkout queue and told me to go and stand outside.
So I did. I stood on the street on a dull winter afternoon wearing sunglasses and holding a box of chocolates, twirling my free hand and bouncing up and down on my toes, feeling very much like some sort of bizarre undercover agent – some of them wear a carnation and carry a newspaper, but I wear dark glasses and carry a box of chocolates!!!
He then gave me the bag full of sushi and sent me straight back to the hotel while he went to collect a couple of coffees from the coffee shop.
The result of keeping the trip short, staying out of the shops, stopping before I reached overload, not pushing on through the stress, was that I was able to sit up and eat my lunch very soon after returning to the room. Very different from usual. And very different, as it turned out, from the second day, when I was already tired from the first, and stayed out for much longer, resulting in a shutdown.
My life will be full of decisions from now on. I will have to decide how much a browse round a shop is worth. I will have to weigh up the enjoyment against the cost. I am now aware that when I push on through the difficulties I’m overloading my system and making myself ill.
I feel somewhat wistful about this. I sometimes feel that I have basically discovered that I’m “allergic” to lights and noise and people. I am somewhat sad that “just stopping to browse round a shop” is now something I need to think hard about. I need to consider how much time I have for recovery, whether I’m hoping to do anything else that day. I suspect people who discover a food they really like makes them ill feel a bit the same (I couldn’t drink coffee for around 20 years – but, bizarrely, taking quetiapine sorted out the problem, though I still regard coffee as a real treat because I couldn’t drink it for so long).
The same will apply to social situations. I have to lead a gentler, more measured life. I now know that I need a lot more “down time” than most people, a lot more space between activities, a lot more blank days in my diary.
But I still want to do all the things. I still want to get excited and go places. I still want to meet people. I still want to learn stuff from experience rather than just books.
The new life is going to be something of a balancing act! Probably less so than it is at the moment while I’m still in burnout, still adapting, and still going through the diagnostic stuff and recovering from the shock of it all, but I know that I will always have to think carefully about stuff that many people take for granted.
I’ve never been that good at “moderation” but it seems that I’m going to have to learn!