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!

Do I have to be sad? Why?

The functions of emotions are to motivate behaviour, to communicate to others, and to communicate to oneself. This short clip explains beautifully. It will use no more than 150 seconds of your life but could open a whole world of understanding to you (sorry, I really love DBT!!).

As you'll know from my previous post, I've been visited a lot by sadness recently. Now, instinctively I really hate sadness. My goodness, it hurts so much. Loss, endings, emptiness, aloneness - they're not pleasant to feel. But I've been on this therapy train for long enough now to pay attention. My life experience tells me that if I ignore an emotion is only going to spring up on me and shout its message louder until I deal with it. It might bog off for a bit, but it will come to get me, and it won't be pretty. And by then I probably won't even know why I have it so it will be so much more difficult to resolve.

I've made a treasure basket (bowl) of
sensory objects that are meaningful to me

So the sadness is shouting pretty loudly right now, and I've made a conscious effort to allow it to be there, talk about it, and to bear it in a healthy way (self soothe, distract, mindfulness - the three pillars of emotional regulation oh how I love DBT ha ha! Useful recently have been working on my sensory cave project, being outside in the countryside, listening to music, starting some gardening projects, talking to friends/family/professionals, listening to meditations, time in my sensory cave and being honest about how I feel even if I'm worried about the effect it will have on others).

The next step, as I like to get my old Brian engaged in things too, is to really explore sadness a bit more. What is it for? What is it telling me? How can I act helpfully towards it to ease my suffering or bear my pain (suffering being an unnecessary addition to pain - there's a whole other can of worms discussion!)?

First port of call is my emotional regulation handouts (from Marsha Linehan's DBT Skills Training Handouts and Worksheets, 2015). Amongst others, sadness is prompted by losing something or someone irretrievably, being separated from someone you care for, being alone, or feeling isolated or like an outsider, things being worse than you expected, things not being what you expected or wanted. Well, my sadness is pretty understandable and accurate then. (As an aside, biological changes and experiences are also included on each emotion sheet, which can be really helpful if you're not sure what emotion you're feeling.) No need to act opposite!

I'm interested to look at the listed expressions and actions of sadness then, to see whether I've been using any of them. Do they come naturally to me, or perhaps not, because I have tended to avoid sadness where possible? Maybe if I don't use them naturally they could help me process the sadness.

• avoiding things
• acting helpless, staying in bed, being inactive
• moping, brooding, or acting moody
• making slow, shuffling movements
• withdrawing from social contact
• avoiding activities that used to bring pleasure
• giving up and no longer trying to improve
• saying sad things
• talking little or not at all
• using a quiet, slow or monotonous voice
• eyes drooping
• frowning, not smiling
• posture slumping
• sobbing, crying, whimpering
• other _______

Looking at the list, some seem helpful and others less so. Perhaps more markers than suggestions, or ways to understand our behaviour compassionately before inviting sadness with us as we continue life. I think the list demonstrates how we can get stuck in a spiral of deepening sadness too, as several of those actions will feed back sadness to the brain and increase the intensity of the feeling.

Just hope you're not such a snotty crier as me!

Some, like crying, are definitely good to try though: no matter how much it feels like you'll never stop once you start, I can assure you it's not true! I have found if I can let myself cry (proper crying, not the leaky face type that comes upon me uninvited!) it really helps to be able to carry on life. It's an acknowledgment. Yes, I am sad. I have a gap in my life and it hurts. That's OK and I'm going to gently carry on with what I want to be doing in life. (Love to throw in a bit of Compassionate Mind too...)

Lastly, the sheet looks at aftereffects of sadness, which could include not being able to remember things, feeling irritable, touchy or grouchy, blaming or criticising yourself, ruminating about sad events in the past, insomnia, appetite disturbance, indigestion and others. Ties in nicely to the post I'm planning on executive function, and hopefully allows us to be a little compassionate to ourselves, understanding why we may have some seemingly unrelated difficulties, and continuing to care for ourselves in a constructive way.


As a final note, another great look at sadness I found is here (What is Sadness?). It takes you through a similar process but points out a few different things such as some people's tendency to avoid sadness (See also this 80 second clip on avoiding sadness. It references Borderline Personality Disorder but is relevant to most people.) and how we may want to respond to others' sadness. I particularly like this quote on the function of sadness:

The universal function of sadness is to, in some way, signal for help. This can be a signal to others saying that we need comforting, or to ourselves to take some time and recoup from our loss.

That is the message I'm going to take away from this curious little exploration of my sadness. I have a human need for comfort, and it is entirely right to experience that need and tend to it in a healthy way. As my psychiatrist told me all the time, sadness is there to show that you care.

The problem of help

I'm struggling with the lack of support. One of the big pieces of work I took on during my admission was around help and care - accepting it, accepting that it's OK to need or want it, and eventually asking for it. Feeling as though I have to cope alone and should be able to is a big risk factor for me. Through months of hard work and training I got to the point where I could often keep myself safe by either using my own skills to manage or by recognising when it was too much to manage alone and using various means to obtain help in a constructive way. Some of these achievements only came during the last couple of weeks of my admission, and I (a marker of my progress!) asked more than one person what the point in having the help now was, when very shortly I wouldn't have any. I was encouraged to use all the help I could while it was available.

First let's be clear, I am not complaining about this advice. It allowed one very memorable time a week before my discharge, where I managed to text for help and was beautifully supported through my distress in a way that I wanted to pot and play in every training course for people working with people who have high levels of distress.

But I was also so scared for the future when I wouldn't have this available. There are people to support me now (and all of them have got me through very tough moments from near or far), but most of them can't be physically with me, and the ones who can haven't had much practice because I haven't let them into my distress before. My anxiety causes an increase in other people's anxiety, which isn't great for anybody!

Some of my flashcards to ask for support

I decided the best thing I could do was to pot the support as best I could. I wrote down exactly what this member of staff did and turned it into a stage by stage meltdown support plan in the hope that people around me are more likely to give the kind of support that helps, and more likely to be confident of their ability to help me. I also keep copies for myself, so I can coach myself through a meltdown. When distress comes, this has proved really useful, along with my memories of that and previous occasions. It's horrible, it feels lonely and helpless and hopeless but it has also allowed me to survive distress without using self-defeating behaviour. So I'm glad I followed the advice and asked for help while I had it.

But oh, the sadness and pain of once discovering you can have something - the care you have so desperately yearned for for such a long time, perfectly administered - only to have it snatched away right when you start letting yourself accept it.

I'm trying to use all the skills I've learnt to manage this sorrow. Welcome its visit and treat it kindly. It is here to tell you something. You long for care because you are human, not because you are greedy, an inconvenience, a problem, a difficulty. You have lost something so terribly fundamental and important to you. It is natural and correct to feel sadness and pain. The visit may be lengthy - the visitor will stay until your need is met in another way. Attend to it, listen to it, accept and care for it. Don't stop still and abandon your life, but show the visitor what else there is - there is also joy, peace, independence (you can manage on your own, and it can be OK - a mix of both is healthy and breeds support rather than dependence), and the excitement of newness and exploration. They aren't excluded by sadness, and neither do they exclude it. Loss and gain, loneliness and connection, can sit alongside each other bringing a deep richness to the experience of life.

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