What I'm doing to cope

I thought all this talk of sadness might be bringing you down, so I've decided to give you a peek at some of the many and varied strategies that are making life better and keeping me going!

Small, manageable projects, some of which are wonderful to share, others of which are most useful alone.

Creating my sensory cave - this one is a double whammy because as well as a project to do, it is already benefiting me enormously, and more than I dared to imagine, as a low stimulus space where I can be alone, in control and recharge.

Gardening with Mr Peggy - this is so much fun, and something we've discovered we love to do together. I've always wistfully thought I'd love to garden, but usually I just kill stuff! We're trying some flowers and fruits so watch this space! And in amongst them are some really meaningful plants for me, given to me by various people who I'm missing a lot. It helps to grow these plants and think of them.

Treasure basket - of favourite sensory items I've collected from meaningful places and perfect little bits given to me by new friends which mean the world. I can tell you the story of each piece.


Walks in the countryside - especially when I'm on the phone, I wander aimlessly out of the village and see where I end up! Good job I have a good nose for getting home again! Being outside really helps me to regulate my body and emotions and to be calm and process. Exploring with Mr Peggy has been great fun and exciting and just a lovely way to spend time.

 






Guinea pigs - always a sensory delight, good fun and cute!



Yoga - a constant that has stayed with me from my time in hospital and one benefit of the lockdown! My weekly Zoom yoga class with the wonderful Hania Therapies. Amy has also been giving a daily 15 minute live yin session throughout May - perfect!

Wordscapes - the one and only game app I have on my phone, but a really useful distraction I've brought back from my time away from home to keep me going in difficult moments. Sporcle is also good for this if the laptop is to hand.

Family and friends - I can't count the number of well-timed messages I've had that have helped me through difficult moments, knowing that I can send a message to Mr Peggy, a Peggy sister or a Geordie Peggy any time and they'll have my back.

Blogging - writing really helps m discover and process what I'm thinking and feeling. As I always say, I do this more for me than for any of you!

And of course, a bit of at-home therapy, cracking out the CBT, DBT etc etc!

A Whole New World

Reflections on the way autism adds to the difficulties of discharge from hospital.

I've lost count of how many times I've said "I don't know how to do this" and "I can't do this". And the times I've thought it are at least tenfold more. 

Overwhelmed is how I'm feeling. The sadness and grief of the loss of a large and life-giving community of patients and staff who have been with me through every beautiful and ugly step of the last seven months. 

But also the sensory aspects of the change of environment. The soundscape is unrecognisable, and not just the obvious differences like the exchange of bleeps from the locked doors, emergency buzzers, fire alarms, passing of people in the corridors and general chat of a large community for chickens in the garden. The space itself sounds different. The rooms are small and the space is small, the furnishings softer and more prolific: sound reverberates differently. 

Noisy blighters

Also noisy blighters!

Visually it is very overwhelming. I've got used to an uncluttered environment, with less stuff in larger spaces, high ceilings and calm spaces cleaned at a minimum of daily by a fabulous domestic team. 

The smellscape feels jarring and hard to deal with. I struggled with one or two of the smells on arriving at the unit, but now I'm home I'm bombarded with the toilet air freshener, guinea pig smells, scented feminine hygiene products, and just the ambient smell of a house with different people in it.

Driving through the streets, I am bemused by all the people. It's not that it's busy - it's not - it's that I don't know the people. For the last 2 months I have only seen people I know. Plenty of people, but only ones I know. I'm a bit confused by the sheer number of randomers around the place. I don't know who they are or what they are doing or why they are there. I can logically understand their presence (eg. they live here and are out for their daily exercise), but it confuses me and takes extra processing capacity to accommodate. 

Different but definitely good!

The differences aren’t necessarily bad in themselves (some of them are definitely good - Mr Peggy pheromones, a more comfortable bed, guinea pig cuddles!), they just bombard my brain because they are unexpected and therefore demand attention. To start with my brain says they are all bad and wrong, but it will gradually filter out which ones it genuinely doesn’t like and which were just a problem by their newness. 

Reassuring constants

I'm trying to use an invaluable tip from my named nurse: when everything seems wrong, look for the things that are right. I can still hear the birds. I can still touch my blanket, weighted sloth, soft toys and my clothes are the same. I can still take Ma Peggy for a walk on the phone. I hold on to the stone my psychiatrist gave me, and the memory of every non-socially-distant hug, every look and word spoken to me as and before I left. When I reach for my things in the shower they're not on the shower chair but they're still an arm's length away at the end of the bath. 

And I'm trying to be compassionate to myself. When I arrived it took me three weeks to feel even a vague sense of being able to live there. I mostly cried, ate and slept for three weeks: perhaps I shouldn't expect it to be all that different. I don't know whether for a non-autistic person this would be different - perhaps they may expect that I would adjust more quickly because I'm going to a familiar environment, and maybe I will, but the environment doesn't feel all that familiar. It's jarring and constantly throwing difficulties at me, and that's OK. It will pass in the end, just as it did when I moved to the unit. I just need to accept what is in the moment and use all my soothing skills and coping strategies. 

Whatever changes, hope is constant too