I'm a person too, and that's OK

Sorry this is a long one! Think I'm guilty here of trying to tell the whole story and wittering on about something that could be said succinctly. And doing that very clumsily at times. But I can't be bothered to edit any more to make it pretty and readable because I add more instead of editing out!

I had a good reflection today.

In a group we were talking about self-esteem and assertiveness and I had a bit of a warm fuzzy thinking about how much I have come on in this area over the past few years. 

One of my core ideals is to be kind to others, to help people when I can and to have a positive effect on those I come into contact with and so for me people thinking I'm unkind, self-centred, rude, greedy or lazy is one of the worst things that could happen. I know I shouldn't care so much what people think of me but I do. Because I communicate in a different way from the majority of people (eg. I don't always realise the truth may be offensive - if I state the truth it is simply that, without judgment, but I think others infer a judgment and are then upset because they think I'm saying something is bad when actually I'm just saying something is) and my face and body language don't always convey my true feelings in the way people would expect, I have many times been misinterpreted and this has resulted in my beliefs, thoughts, behaviour and emotions gradually becoming more and more skewed in order to stay safe from being viewed in those upsetting ways that are so against my values. (Perhaps it seems so intolerable because not only is it upsetting but it's not true. It doesn't line up with the facts of who I am?) 

But recently I've become less black and white and learnt that expressing my own needs, thoughts and opinions does not necessarily mean other people's are squashed and that I am acting against my values. "Both of these things can be true" is a phrase I frequently come back to that really has transformed how I approach some aspects of life (when I remember!).

Back to self-esteem, thankfully I have never had the belief that I am a completely terrible, useless, rubbish person - I had some internal confidence in the things I had abilities in and in myself as a vaguely kind person. But... I did not esteem myself highly, or much at all. I didn't think I mattered. I would happily put myself in rejection or ridicule's way if it were a matter of someone else's wellbeing but if I needed something or felt hurt I would stay quiet. I downplayed abilities for fear of being rejected or ridiculed. I placed little to no importance on myself, my needs and my wishes. Although I didn't believe I was bad or useless, I somehow believed I was less important than others and that if there were any discrepancies the other person must be right. Put others first; don't presume upon anyone to put themselves out for you. I still think these are worthwhile values, but my brain is black and white and takes everything to its logical conclusion, so these become "your needs and wishes are not as important as others' and you must never inconvenience anyone." And then "you should be invisible and not need anything." 

Somewhere over the past few years I have moved on slightly. The therapy and support I've had has probably (definitely) helped! I'm not sure whether I have consciously tried to be more assertive in my communication (where previously I would have been passive because I was so worried that I would appear aggressive/awkward/obnoxious, offend somebody, inconvenience somebody or just that they would misinterpret and think I didn't care or didn't like them) or whether it has happened naturally as I have started to understand and accept myself more.

I was so scared of trampling on others that I daredn't exist. I still mitigate most requests with disclaimers and most refusals with apologies but I now place enough value on myself that I am more likely to express my needs or do what I need to. I don't (always) automatically feel guilty and that I am bad or wrong for stating honestly my perspective with respect and kindness towards the other party. 

And on reflection it's actually better for everyone if I am assertive (which doesn't mean trampling on others but expressing my needs and opinions clearly but kindly). Being assertive involves behaving with proper compassion (not just "niceness") to both myself and others, and gaining an understanding of this through therapy has definitely helped too. It's obviously better for my own wellbeing because I don't end up in burnout and resorting to unhelpful coping strategies (as much) - which would be reason enough to celebrate - but it can be helpful for others too. Looking at it the other way round, I feel much more settled amongst people who are assertive because I know I can ask them things because I know they will say no if it's not right for them. If I can't trust someone to say no then I can't ask them to help because I can't be sure they won't help me at their own expense. When I know people understand and are comfortable expressing their needs or opinions then I'm not worried that I will hurt them unwittingly. And so I can return the compliment by not giving people the extra work of trying to guess when and how to help me and whether my needs are being catered for. 

As we talked about what low self esteem can look like - including never saying no, always saying sorry, perfectionism, avoiding situations eg conflict or going out, not challenging self etc - I realised that I am much less like that than I used to be. Sometimes it's little things like saying "thank you" instead of "sorry" and other times it's bigger things like asking for help when I feel that I shouldn't need it, or saying "no" to something that will be detrimental to me. I have actually come a long way and that is great. Some of the things I have learnt have started to stick and although I still struggle with many thoughts and beliefs about myself and the world, some of those problematic areas have seen a shift. And the fact that I'm more comfortable with that says a lot in itself about how I value myself. Other things will be harder to change but it is helpful to notice that some movement has happened and that it is both acceptable and positive. Maybe other changes will eventually become acceptable too.

Edited to add: Searching for a title for this, I realised I am much better at referring to myself in the first person now - maybe I'm getting better at having a "me."

Care

The other day I read this fantastic article about nurturing nose and face wiping. Oooh, it really got me thinking. If you ever in the run of your day find yourself wiping someone else's nose, you should read this article. If you don't, you could read it anyway - it's never a bad thing to broaden our awareness of different life experiences, and you never know when you might find yourself in a situation where the insight and understanding you gain could be useful. An aging parent or friend, a grandchild, niece or nephew, or even your own child, spouse, brother or sister can find themselves in need of physical care at any time, long term or temporarily.

The article is full of quick, easy practical bullet points to consider, yet it relays the true essence of care with brief explanations of why each aspect is important.

It is all about increasing the wellbeing of the person being cared for by supporting their understanding and anticipation of what is happening, valuing their personal preferences (eg. amount of pressure, type of movement, smells or lack of them) and autonomy, promoting their dignity, privacy, comfort and physical wellbeing. 

I keep wanting to copy and paste bits but then it's all so good I wouldn't want to miss any out! So just go and read it!

But it also got me reflecting more widely on care. Everybody will at some point in their life find themselves in a position of caring, whether this be in employment or personal life. We generally find ourselves there because we do care for that person. Because we want to make a difference and support somebody's wellbeing in whatever ways we can. 

We are also almost certain to require care at some point. We all required it as babies and children and to lesser or greater extents will be cared for throughout our lives by those closest to us or by professionals.

Can you think of any moments when someone's care has really made a difference? It's easy to pay attention to times when we have been failed or let down, but what was it in the times when you felt cared for that made the difference?

One moment I will forever remember is when I opened my eyes a slit as a particularly bad panic attack was beginning to ease, to see the support worker catching my streaming snot and saliva with a big wad of tissue. That image sticks with me. No disgust, no revulsion, no big deal, no expecting to be thanked or that I was even aware of that particular action. Just two people being with me, facilitating me to recover in the best way for me: waiting until I was ready, using minimal language, taking care of my physical needs when I couldn't and wasn't aware of them, maintaining my dignity as far as possible.

I'd love to hear of any moments of care that have stuck with you, big or tiny.

Whisper

Whistles and shrill squeals awaken the evening air as the swifts soar and arc across the sky in their infinite playground of freedom. They have brought me peace and joy in summers gone by, but I said goodbye to those days as they were followed by dark, dark ones and it became too painful to remember the rising promise of life when it had since been dashed so thoroughly.

And yet tonight the warm breeze that gently stirs the birch leaves brushes my skin with the softness, security and familiarity of a well-loved blanket, delivering the faintest glimmer of what I thought was lost to me: forbidden, abandoned hope. It's gentle enough to be permissible - it slides in, the tiniest of feelings, barely noticeable so as not to alert the beast within to its presence, and yet I know it has visited me.

Hope is painful, it brings uncertainty and the possibility of crushing, destroying disappointment. These things I cannot bear and so by habit I squash hope. I box it up for when I'm sure - it's lovely to know it's there but I can't bear to touch it. But this hope stole quietly up to me and stroked me on the cheek, not overpowering with its presence but simply passing by just to let me know it was there. It didn't need me to take it captive, it will come again when I'm ready for it, and I will learn one day to dance with hope.

Accepting Today

Different days are good for different things.

Just because you can’t do something today doesn’t mean it will always be like that*. When I feel like I can’t do something, I can’t imagine ever feeling any different about it: it is absolutely my truth. But that’s not true. I am finding that if I let myself not do the thing, there often comes a time when I feel able or even willing, to do the thing. That time often comes far sooner than I expect, and I suspect it is related to accepting my needs in the moment and giving myself the freedom to do or not do as is best each moment.

The more I pressurise myself to do something, the more I cannot do it. It is more than resistance I feel: an impossibility. I am scared, feeling almost literally petrified - if I must do the thing, there is no way out, no option or safety net if for some reason I fail. I get caught in the dilemma of “I can’t do the thing and I can’t not do the thing” and this is when my brain implodes and off I go into threat system (fight/flight/freeze - I am a freezer, hence “petrified”). Acceptance is an exit from the dilemma that leads to crisis.

Actually it turns out that whatever I can do today may not be the same as what I will be able to do tomorrow, and it may not be the same as what I could do yesterday.

And that is OK.

Some days I can use all my
tools to make a moment of OK

Some days I can’t talk but I can write. Other days I can seek out a friend to help me.

Some days I can read but I can’t think. Some days I can think but I can’t read!

Some days I can’t stop thinking but I can dance.

Some days I can’t dance but I can wrap myself in a blanket.

Some days I can’t eat; other days I can’t stop eating. Some days I can be balanced.

Some days I can’t leave the house but I can support a friend over the internet.

Some days I can push myself; some days I push too far. Some days I can show myself compassion.

And that is OK.

Some days I can play upside down!

Every day (and moment, because these states rarely last a full day!) is different and every day is a part of my life that I can choose to accept, whether or not it’s what I hoped or planned for. When I choose to accept my truthful state of being regardless of how I might be inclined to judge it and of how it looks to other people (Although please take note - it really does make a difference if those around you are accepting too. It is an exhausting fight to accept the unwanted sides of your life), I tend to have a better state of wellbeing and a higher probability of positive change.

I dare you to give it a go: try being kind to yourself instead of beating yourself up. Cut yourself some slack, listen to your body and believe what it tells you for once - it may just be right.

*A couple of disclaimers here:

1. I am purely talking about psychological “being able” to do things here: having limits to physical ability to do things is another matter entirely and probably approached in a completely different way. Sometimes my psychological “not being able” to physically stops me from being able to achieve the activity; other times I could theoretically do the thing but I know that it is not a good idea to. I am working on categorising this as a “can’t” to combat the very powerful “should”s in my Brian!

2. This does not mean that I never challenge myself, that I “let myself off the hook”, stagnate or gradually shrink my life to a sad place, although I do sometimes miss out on things I would like to have done. On the contrary, experience has shown me that through accepting when I can’t, I actually have more occasions when I feel able to do more than expected, or I feel more able to take those opportunities or risks because I know I have a safety net or an option for “failure”. I am also more likely to enjoy and be successful at the things that I do do. I am more likely to push myself on the things that matter rather than indiscriminately spending my efforts trying to do everything including things that are potentially damaging, or bring difficulty with no benefit.

Having a "me"

I've been wanting to write this post for a while, but I'm not entirely certain of what I want to say, so please bear with me!

It's a post about being a "me": existing as a person or specific entity present in the world of other specific entities. This is something that most people probably take for granted most of the time, but a truth that I have often struggled to accept, or done my best to ignore, consciously or otherwise.

Even as a child I could not bear being conspicuous. Reading aloud at school was terrifying even though I was an advanced reader, being picked on to answer a question (because I NEVER volunteered) was my worst nightmare, having my music practice observed (just the presence of another person in the room, or even the house) made me angry and fearful and even the acknowledgment of my having completed some action or made some choice made me at the least uncomfortable. I sometimes find it intrusive when people use my name. When I'm really stressed out and can't have the control or invisibility I need, I have recently realised I just disappear. My body is there, doing what has to be done, but I'm not really in it - I have relinquished all choice, feeling, control, and thereby, "me", because to try and maintain a part of it or be present while lacking those things is too painful.

I always knew I was different from other people and that other people often knew this too, and being different is generally experienced as being wrong. I learnt to fit in well enough to avoid being a complete social outcast, but for many years I was very much clinging on to the perimeter of inclusion with people who were hardly the embodiment of "accepted" themselves. My goal in life was to go unnoticed.

All this is hardly news to me, and I am fairly sure that it has been a conscious goal through childhood and adulthood. When I received my diagnosis of autism I finally had a "reason" for why I was different and as I had grown older I had found a small number of friends who I truly fit in with. I had the longed-for acceptance and belonging and an explanation of why it had always been so difficult.

How wonderful to go unseen

Yet I retained this need to be invisible. As I worked through therapy recently I was aware that this was one of the functions of my mental health disorder. It was driven by a desire to be entirely insignificant, unnoticeable and to the outside world non-existent. That way you can't cause any problems, you can't be at fault or fail, and you don't hurt. Of course this is nonsense, and I did all of those things a thousand times more because of my condition, but those were the beguiling promises it made me.

Through therapy I have been trying to entertain the idea of a "me" being allowed to exist. Complete with potential for pain for others and myself and inevitable imperfection. I often find it difficult even to write or speak in the first person (even as this is written!), but I am gradually beginning to tolerate the existence of my emotions and to accept what I do or don't do, whether it is what I was aiming for or not. And then to show compassion to that "me" that has been allowed to exist. (It turns out my psychologist wasn't lying when she suggested that accepting things I don't like about myself might help them to gradually be needed less. Counterintuitive propaganda I thought, but there is definitely something in the whole acceptance, compassion, nurturing thing. I hate it!)

My battle with this idea really struck me after I read a post on social media over the New Year period. It stated that "Your wellbeing should be your number one priority. Nothing else is more important." I turned this thought around and around in my head and couldn't make sense of it. Something was wrong with it: it didn't seem to add up. I couldn't work out if it was supposed to be true or not, so I consulted Mr Peggy. He seemed to think that ultimately it probably is true. I'm still not sure (discussion welcome!), but it really made me aware that I still have a strong resistance to considering such a high value on my wellbeing even though I have changed a lot.

Then I began reading a book on "Exposure Anxiety" and my goodness, it resonates in places (I've only got to about page 30 of 300-and-something!). It was mentioned in the afterword of Donna Williams' Somebody Somewhere (second of two autobiographical accounts of Williams' life with autism and her journey from "her world" into "the world") and sounded interesting, so I popped it on my Christmas list and have begun to read avidly.

We disappear at any hint of discovery

Williams defines Exposure Anxiety as "an involuntary social-emotional self-protection response that is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum." "Exposure anxiety makes it difficult to dare 'expressive volume' in a directly-confrontational (self-in-relation-to-other) world." "Exposure anxiety is about feeling your own existence too close up, too in your own face." (Williams, D. Exposure Anxiety, The Invisible Cage 2003, 10-11.) It produces aversion, diversion and retaliation responses and can present in many ways, just as each individual with autism is different, but can include difficulties in making decisions, fulfilling needs, being unable to perform under observation tasks which are well within an individual's skill set, speaking through other people's words (echolalia), being very controlled or controlling, and a myriad of other issues.

It has nothing to do with Exposure Therapy used to treat various mental illnesses, and I'm not sure that it is a widely-acknowledged "thing", but I think it can be a useful way of understanding aspects of behaviour in some autistic people, and the suggestions given for supporting such people certainly have merit. I see a large overlap with Pathological Demand Avoidance (PDA): though perhaps a difference in motivation, the mechanisms and presentation can be similar and helpful responses may look alike.

Perhaps I will write a separate post once I have finished the book, but I found it an interesting concept given my musings on why I find it so difficult to have a "me." (Which I still want to call a "you" because that is much less uncomfortable!)

So here's to "me." Me is a bit intermittent and only appears when she can face it, but we're seeing more of her as time goes on. Just don't tell her if you see her - she'll probably evaporate into thin air!

PS. You can probably tell her afterwards, when it's over because then it's less intense

Failure or Progress? The mental health analysis

Welcome to Week 5! All I can say of Week 5 is that it has offered a veritable plethora of opportunities to practise self-compassion.

Joking aside, it has been rather an odd week which has at times baffled my attempts to disentangle my thoughts and responses to events and actions.

I'm glad I have engaged in the disentangling process though: it has been rather enlightening. When I originally wrote the sentence above, it read "has at times baffled my attempts to disentangle the positives and negatives." My rewriting reflects way my perspective is changing, which is actually a pleasant surprise, because as well as logically being able to produce the arguments I am beginning to almost believe them. Credit I believe to my psychologist and some really lovely people who keep talking sense at me. It's easy to forget where I've come from, or to feel discouraged when I see the long road in front of me, but little bits of change really are happening - something I never properly believed possible. I hoped, but I could not see how it could actually come about. I suppose that's why we go to therapy...

I did a Thing!

So yes, this week included a Thing. I did a Thing! I took a day off work sick. I mean, admittedly I did have to arrange it the day before, and I had to battle the Brian, but I did the Thing! And do you know what, I have such wonderful people around me that I spent the rest of the week being congratulated by various people (from Mrs School-Peggy to Mr Peggy, Welsh Peggy to Mummy Peggy and other lovely Peggies) for my rather unorthodox "achievement".

I fought with self-criticism and feeling useless, with bitter disappointment that I had spoiled my chance of a full half-term with no time off, and many other emotions, but those around me gave me another voice to hear. One that saw the progress in being able to recognise the danger signs before crisis. The bravery in deciding to communicate that to someone else and following up that decision. The seeds of self-care in listening to and acknowledging my needs when they aren't what I want them to be. A voice that may one day exist within me, as I realised that a term with a day off but without meltdown at school may genuinely be better than a term with full attendance leading to decline in my mental health and functioning level at work and a holiday barely recovering from the term.

Square Peggy 1 - 0 Brian

But then of course came FRIDAY. Just to test the battlefield. FRIDAY did not treat me well. I was fine in the morning, but was battered with two double-attacks of immediate and unexpected changes that re-wrote the whole day. I managed to weather the first attack with a good old tried-and-tested bathroom sob session and told myself that I could get to lunch time and then the afternoon would be OK (a low-stress activity for me that was as yet according to timetable). The second wave finished me off and as soon as everything was safe I excused myself for another bathroom session. Decided in a very grown-up manner to let Teacher Peggy know I was struggling, but we ran into each other on my way back to class and she bundled me off to Safe Peggy and I ended up trundling home.

Cue Brian trying for another point. I hadn't even managed the term without meltdown at school now. Why can't I deal with the things like other people can? Why should I be special? Not pulling my weight, useless, causing trouble: mean comments ad nauseum. And yes, I am still struggling with those thoughts, and with the worry that it will happen again or that I will end up back where I was, be unable to work full time etc etc.

BUT even there I know it is not all bad. I got through the first wave of death. I didn't go into complete crisis at the second ("I'm not counting this as a crisis because x, y, and z" was actually said to me!). I was able to tell somebody what the problem was. I looked after myself during the day - went for a tramp on my moor, really stuck two fingers up at Brian by stopping for a hot chocolate on the way home, and put no demands on myself for the rest of the day.

So for the minute, I'm practising seeing that "failure" and "progress" may be closer than I think. Treating myself with acceptance and aiming towards compassion. Not labelling things as "good" or "bad" but letting them just be what they are, with the rainbow of emotional responses that brings. (See this fabulous article by Joanna Grace on rainbow emotional regulation.)

And I am loudly expressing my gratitude for so many people who tell me things so convincingly that I almost believe they mean them, who let me experience a voice other than the one in my head, and who back me up when I nearly hear it myself, celebrating when I follow it. You have had a big part in any progress I am making. Thank you from the bottom of my heart for being with Team Peggy.

I have autism. This means some things are more difficult for me than they are for other people. It can sometimes be hard to be me, but it is not wrong to be me.

Failure or Progress? When the autism monkey invades

This term has been going pretty well. Admittedly I've flagged a bit since week two, but we're on the home straight: 4 of 7 weeks completed and this is the last week of my evening commitments so I know the next two weeks will have more space. I've got much better at dealing with things, understanding and communicating my needs and so on and so forth, so have been quietly looking forward to completing a whole half term clean: last term (an 8-weeker) only held one drama and that was solved by the new and groundbreaking technique of going home and recovering (shocking I know!).

We had a great time!

Then came this week. I misjudged the weekend, having a wonderful day dancing on Saturday with friends, but instead of taking Sunday as a nothing day I took the utterly wild decision of doing an hour's shopping on my way home. This sacrificed my alone time and I had jobs to do in the evening once Mr Peggy was in. I should know better, but sometimes I get complacent and think it can't cost too much to do one extra Thing at the weekend (I generally limit to one Thing per weekend, and try to keep alternate weekends empty, having learnt that this allows me to function during the week). Turns out it does if you're me.

Monday nearly finished me off and I knew I wasn't on top form for supporting some of our little people, so I did a Thing (bold just to differentiate from the Things above!!). I found Mrs School and told her I thought I needed to call in sick for tomorrow. Mrs School has been on this whole parade with me and understood what a Thing it was and was very proud of me for my great achievement. I spent the rest of the week being congratulated by various people for this step in my development: rather humorous but very powerful. How grateful I am to be surrounded by supportive Peggies who are invested in wanting the best for me.

So, having done the Thing I returned on Wednesday, back to functioning level and feeling rather pleased that my bravery had paid off. Yes, I did mourn the loss of my clean half term and deal with some rude Brian behaviour but I came out on top and realised that I am still the winner because actually, I recognised the need and acted on it before ending up in disaster-land. I was able to reflect that a half-term with a day off and without crisis at work is a better achievement than a full half term having dragged myself along at 25%, lost progress on my mental health and needing the full holiday just to begin recovering from the term. Yay! Well done Peggy!

Enter FRIDAY MORNING.

SQUARE PEGGY is much as she has been every morning. She struggles to get out of bed and reflects that actually, she does pretty well day to day. When you consider that by the time she gets to work she has overcome several difficult transitions and sources of anxiety (Getting out of bed, getting out of the shower, leaving the pets, getting out of the car. Dealing with the anxiety of possibly being late, what might happen during the day, whether she's been an acceptable human being etc.), it's reasonable that she sometimes feels a bit wobbly. 

FRIDAY MORNING presents SQUARE PEGGY with an email announcing that the weekly Friday morning meeting (that she panicked for the whole journey she would be late for) is cancelled. She doesn't cope well without this meeting and if she misses it her Friday always feels uncomfortable. FRIDAY MORNING then informs SQUARE PEGGY that assembly is semi-cancelled and to take place in classrooms instead.

SQUARE PEGGY cries in a bathroom for 20 minutes to process this information, then gets herself to class. She plans to try and tell someone it isn't a good day but this is difficult to communicate. She tells herself that if she can get to lunch time she is doing hydrotherapy in the afternoon and that will be OK. She can do this.

As she goes to collect the children FRIDAY MORNING informs her that the pool is closed due to illness. Five minutes later a visitor she had forgotten was coming for the morning enters the room. She holds it together until the children are safe and settled in class and excuses herself to visit the bathroom, where she cries for another five minutes. 

Long story short; Friday is not spent at school either. I've not had the week I was expecting, and today hit me right out of the blue when I thought I was fine.

A tramp on my moor solves a lot!

I have come a long way though: I am now able to reflect with less self-criticism and take on others' comments about the difference between this week's wobbles and those in the past.

On Tuesday I called it before it got to the stage of turning into a crisis. Full on win.
Today I had no idea it was coming, but actually I overcame the first wave of Bad Stuff and didn't completely melt down even at the second. I was able to verbalise what the problem had been, I didn't have to wrap myself in my blanket and calm down for half an hour, I could accept that maybe it was sensible to go home. I went home even though Mr Peggy was there, and I told him I was coming. I looked after myself on the way home, because I'm learning that I am not an exception to the rest of the world: I make progress when I am safe and cared for, not when I am told off and criticised.

I still have an ideal of perfect functioning that I feel substandard for not meeting, and the outcome isn't what I was looking for, but neither is the outcome entirely negative. I am learning, I am progressing, and as that happens I may well move more towards my ideal of functioning. But if I don't, I will accept that. I have autism. This means some things are more difficult for me than they are for other people. It is sometimes hard to be me, but it is not wrong to be me.