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

Spring has sprung

Spring has sprung. What shall I write? Write about coronavirus, write about living in hospital, write about my mental health, write about autism, write about the seasons changing, write about fear and hope, despair and trust?

Today I'm not going to apologise for the long gap between posts. I write this blog for me, not for you (no offence!), and I didn't have anything that wanted to be written. Life has taken on a new temporary normal for the last few months and I have been doing other things with my time and my words, but the blog itch has lately returned and I find myself sitting down now to satisfy it.

 Spring has sprung, and it feels incongruous. I have lived in hospital now for over five months. I left home in the summer and when I emerged from the general hospital it was autumn. I watched autumn turn to winter, grateful for the circumstances that let me daily observe the gradual progress of time. Now spring has sprung, it's quite literally all baby bunnies and daffodils outside, and I don't know quite what to make of it.

Just when my life is set to be expanding once again, it is reined in. I am again drawn back to the birds, the trees and the solace that the Quakers built here. The paring back, the simplifying of life, brings relief in amongst the fear and unpredictability. It's a little incongruous: my fear about the future intensifies as I realise how little practice I will get before I'm plunged back into life, and the uncertainty surrounding what will happen in the coming months is almost intolerable. Yet when I pause and look at right here, right now, I have been gifted simplicity. There are few choices in this moment; the choice is in what I do with the situation. I can't change it, but I can make the most of it. I can accept the period of rest even if I feel I shouldn't need it or if I worry that I won't be able to cope in the future. Right now there is the option to invest in this moment and nourish myself with sunshine, birdsong, time curled up in bed with my sensory lights on, messages to friends and family and as much or as little connection with the outside world over media as I feel is right.

I can spend time thinking about my gratitude for where I am situated, despite its difficulties and pain. I cannot be at home with Mr Peggy or my family and the amount of time I can spend with them is ever decreasing instead of the reverse, but I am surrounded by twelve other people who understand how it feels, some of whom will be friends for life. We pick up the pieces of each others' lowest moments, we joke, we laugh, we silently hand each other the tissues. We have a team of dedicated staff who are sacrificing time with their own families to keep us safe here. When they are at home they stay away from grandchildren so that they can safely come to work. Instead of being with their children or parents on Mothers Day, Mothers are comforting those of us for whom the day brings pain and sorrow. They are prepared to sleep over if we go on lockdown, and to barrier nurse us if we contract the virus. Our OT brings her dog in to cheer us up as our visiting activities are all suspended. I have many things to be grateful for. I am fit and well and normally able to access the outside world: many, including my own close family, are not so fortunate. Isolation is every day. So I'm off to look at the baby rabbits and to hug the trees and to breathe the spring air, and I'll come back in and write some postcards to people I can't see.

Bad, broken or different? I need to be alone

Like many others, I have lived most of my adult life in perpetual pursuit of treasured time alone, getting through whatever is happening by aiming towards my next good chunk of alone time. I'm always on the edge (or ever more frequently over the edge) of coping, feeling that things are going to fall apart any minute. The last couple of years they very often have done. Shutdowns became increasingly common, they started to affect more and more situations until I just couldn't function effectively.

Usually I need to be alone...

I've had quite a groundbreaking realisation after being in hospital for an extended period. The first few weeks I spent in my room whenever that was an option. I was settling, learning a new place, new routines, new people and processing a whole load of crazy stuff. Hours and hours of alone time. About four weeks of it, I'd say. But eventually I started to venture out. Optionally spending at first little moments of time in communal areas, then slightly longer periods. I now actively enjoy and choose to spend time with peers. I would rather be with them than alone when I am dealing with difficult thoughts and emotions, which is a new and unexpected experience for me (feeling inclined to be around others when struggling, not dealing with difficult things!!). Admittedly it is an unusual environment, where all the people have certain similarities in our brains, and I don't think it's unfair to say that the amount of care and understanding and support is unparalleled, at least in my experience.

But it shows me something new about myself that I never expected. I'm not a bad person, and I don't hate people. When the input is reduced down completely to below my threshold (And this was to zero, for an extended period. It's a funny experiment/opportunity that you'd never be able to run in real life, but retrospectively I'm so glad that it's come about!), I actually choose to be with people. I want company; I want to feel connected. It's just that I require so much processing time to stay regulated and avoid becoming overwhelmed by the anxiety and emotions that build up from being alive. My capacity for effective and beneficial social interaction is tiny. I need to stop before I feel like stopping in order to avoid delayed overload.

It makes me feel a little sad and hopeless, because I can never be as big a part of things as I want to be if I am going to live my life in a way that's manageable for me. I won't know people as well as I would like to. I won't be such an integral part of groups or such a support to friends and family as I would like, because I can't survive long term if I do all that I want to. I have to miss out, and people have to miss out on me. I feel like a broken human - one that doesn't work properly. Even being in touch through electronic means has a drastic impact on my coping levels. I don't know what this means for how I manage my life as I rebuild it.

But I'm still glad that I've had this opportunity (despite how it's come about - every cloud has a silver lining and all that) to see what happens when I take normal life away and start from zero. I'm grateful to have discovered truths about myself that I never would have found out by any other means. It allows me to be a little kinder to myself, and to know "me" a little better.

 

For the minute, I'll sit in my tree and try and be alone as much as I need to.

When "no" is not an option

As a follow-on from my previous post, I want to share an experience I had in the hospital. Be warned this may be upsetting (powerlessness, medical procedures), so please consider first whether you wish to read this post or not.

I had one of the most terrifying moments of my life on my third day in hospital, and here I am not exaggerating. I consider myself highly privileged that this is a feeling I haven't experienced until now: I know that many, many people have, both in a medical context and other situations.


I'd had a piece of equipment fitted on AMU on Tuesday. This was painful, upsetting and far worse than I had imagined it would be, but I had been warned they are not pleasant to have fitted, so I coped pretty well. Even when I could hardly utter a word afterwards, and move/breathe little without coughing. The doctor didn't seem confident and sure enough after a multiple-hour wait and a move up to my ward, as soon as eyes were cast on the positioning x-ray it was out as quick as you can say Jack Robinson.

I prepared myself for the re-application (sooner than I thought - I'd originally been told it would be the following day, but with good support I coped when it was sprung on me that it would be immediate), this time by a reassuring, experienced nurse who was very calm even though it was really difficult to get placed, took his time, mixed humour with understanding and we all got through it together. It was still painful and traumatic but after doubt about the position imagine the party in Side Room 28 after x-ray finally confirmed it was correctly placed. Three people have never celebrated bodily fluids so enthusiastically!

I went to bed happy that Tuesday night. The equipment was finally sorted, I was on the right ward that knew how to do things, the nursing and care staff were super attentive, supportive, helpful, and enabled me to take on challenges I didn't think I could achieve. What a healing environment. This was beginning of the way up. I slept.

Just before waking, I dreamt I pulled the equipment out and it had to be reinserted. The panic was real. I woke. The panic had faded but I was a little unsettled by the whole experience of being here, in hospital, monochrome, bright lights, machines and equipment. And the kind night staff from the night before had finished their shift. I managed to keep my anxiety under control. Then I pointed out the leakage from my new equipment overnight and a fault was discovered. "It'll have to come out."


Well that was the end of that. I burst into tears of panic. Nobody was going near me again thank you very much. There had to be some other way. An unknown doctor came in with a friend early on morning ward round to explain to me. "It's not supposed to hurt" (Ah, I'm glad you told me that - it mustn't have hurt after all, my mistake...??!) "It's very unusual to have one damaged, you've just been very unlucky" (I'm glad. Does that solve the problem though?) All I could do was sit and sob and refuse and make a request that I see the doctor from the Liaison team before they did anything. I am so unbelievably glad my mental health team had drilled into me that I could do that. The doctors left me in shutdown, simply saying "We'll come back after ward round and do it then."

It was at that point that I realised I had no choice in the matter. If I kept on saying no, I would simply be presented with the Mental Capacity Act and the procedure would go ahead anyway. I have never experienced such a feeling in my life. Complete powerlessness. Utter terror. No escape. I am a compliant person and if I get round to saying no there is a mighty good reason. Such as "I don't see how I can actually survive that happening again." But nobody knew that, and even if they had it wouldn't have made a jot of difference.

How often do our children with complex medical needs experience this? What does that do to a person, to repeatedly have to keep living through that? Babies are operated on without anaesthetic. Adults and children with learning and physical disabilities are abused. Men and women are assaulted.

I was lucky. My request to see the Liaison team worked not because she said anything different, but it bought me about 4 hours of processing time. I managed to calm myself and face the idea of allowing another traumatic procedure. She also made the suggestion of a tiny dose of Lorazepam to ease the process, which nobody else had offered (although I do note that when the doctor came to do the procedure later he didn't offer it or wait for my request as she had said but explained that he would bring it and I would take it... I suppose he probably had a rather inaccurate understanding of me as the only time he'd ever met me previously was in meltdown that morning...). Turns out, third time lucky. It worked how it was supposed to. Not comfortable, but quick and pretty easily bearable once complete. Others are less lucky and for that reason I will not forget those moments of utter powerlessness and panic.