Always Be Prepared

I never take my clothes off inside out, because that means I would have to turn them the right way again, either when putting in the wash, hanging up to dry, putting away or getting out to wear. That would be annoying. It's much easier to just take them off the right way.

My routines and preferences and "correct" ways of doing things generally have an important reason behind them, and I have usually formed them through experience in order to avoid anything from minor inconvenience to high distress. I prefer to wash up as I go along when cooking so there's not a big pile waiting later when we want to relax. I make sure I have everything I want to hand before I start feeding Baby Peggy. I write emails before appointments so we know what to talk about. I always put things in the same places so I don't have to look for them - I know where everything is. I always have my rucksack with me with a gazillion things I occasionally or frequently need (blanket, notebook, headphones, diary etc etc etc). 

I wasn't quite sure what to title this post or what my main point is, but I want to write something about being prepared, or being informed, or being in control.

I invest a lot of energy on being prepared in life and thinking ahead to anticipate problems and head them off before they happen. This often looks to others like being pessimistic, wasting time and energy (I don't always do things the quickest way; I do them the best way for me that makes them easier in the end) and being fussy, awkward, controlling, paranoid or pedantic.

One of my major concerns right from early pregnancy was how I would cope with being in the hospital due to the intense emotions I have surrounding the memories of my past experiences there.

I could have tried for a home birth but found the uncertainty around this difficult to manage. If staffing was short on the day or if I had complications I would have had to go in anyway, and then I would have had the additional stresses of it being a change to plan and of not having worked on accessing the hospital. And there was no way of avoiding a small number of visits antenatally - any visits to triage for concerns about movements had to be made there and although they were very accommodating about trying to get my scans at the local hospital one or two had to be in the hospital where I have the main issues. 

So I decided early on that I needed to tackle the issue rather than trying to avoid it and we embarked on a Grand Preparation Scheme.

In the end I was advised to give birth in hospital for medical reasons and had to be induced a week early, so I was glad of this decision.

Good old Stan

There were visits to the maternity unit, starting out very small with just what I could manage, with my familiar midwife. She used different routes to avoid the worst places and this was accommodated even when we had to make unplanned visits without anyone who knew me (after some very clumsy explaining by me, translated by good old Mr Peggy!). I had a summary of my needs and difficulties and how best to support me on the front of my notes, and worked on communication cards with my OT. We planned what distress tolerance techniques I could use and I practised them on visits (fidget toys, my weighted sloth Stanley, acknowledging my thoughts and feelings in speech or writing or just internally, acting opposite to the unhelpful urges that arise when trying to cope, distraction activities such as reading and puzzle books). I wrote down all the questions and worries I had (not all at once but as they came to me!) and took them to whomever could help so I knew exactly what to expect. People knew to ask me what I had written down for them, or to discuss whatever I had said in my pre-appointment email. I watched every episode of One Born Every Minute to give me an idea of scenarios that might come up or things that might trigger me in the delivery room. I carefully didn't make any rigid birth plans in case of need to change them and instead researched all options and practised telling myself that whatever I need is OK. I prepared myself to pay conscious attention to what I need and make it non-negotiable to communicate this to those around me. I thought about whether I needed to take my own soap that smells OK, prepared myself for the food situation in hospital and packed familiar snacks, and packed other familiar calming items such as my bedside sensory light.

Very brief explanation of
a safety behaviour

To some people all this extensive preparation might seem over the top or like a safety behaviour. Perhaps it is. But do you know what? For me it worked. I didn't need everything I had prepared but I had prepared everything I needed. Nothing took me by surprise, I had all the coping strategies I required, and I was able to communicate my needs. Neurotic safety behaviour that perpetuates anxiety or sensible anticipation and solving of problems? Perhaps a bit of both.

Either way, compared to my first hospital stay where I had no idea what was happening, felt very overwhelmed and ended up with a lot of unprocessed experiences that still trouble me now, this time was a world apart. I used past experience to inform me about what would be difficult and what would help, and it was worth every minute. My birth was a positive one and I have none of the overwhelming and complicated emotions attached to my memories this time. I am very grateful to everybody who supported me throughout the preparation process.

Many Neurodivergent Returns of the Day!

I'm a bit cross about my birthday this year. I feel it has misfallen rather, at the end of a week where I've somewhat overdone it socially, and am dealing with some fairly hefty hammers to my mental health.

I often feel that there is a great expectation to enjoy one's birthday: a pressure to celebrate and be happy (hence "many happy returns!") and have a Special Day. I feel like if I don't have a lovely day I will be disappointing people, because they have expressed their wishes and hopes that I will have fun, or have a wonderful day etc, and I have not demonstrated this to be the case. I know this isn't what they intend - they are kindly expressing their hope that the day treats me well, and I do the same to others because I hope their birthday does treat them well. But somehow it makes me feel sad or guilty if I can't fulfil those wishes!

The points I want to make are twofold, I think.

One: "happiness" isn't everything, and neither can it be manufactured or conjured up on a whim. 

Please don't start CBT-ing me here or telling me how to create my own happiness. I know we can do things to shift our emotions but that isn't my point right now! What I'm trying to say is that why should emotions be in a heirarchy with happiness at the top? Are "good" emotions somehow more valuable than "bad" ones? Am I a better person if I'm always happy? 

Admittedly it is more pleasant to feel positive emotions, and for most people it is easier to be around somebody happy than somebody sad or angry (perhaps hence the general pressure to be happy, because then the other person doesn't feel obliged to feel bad that you're feeling bad/try and help you/invest time in being with you in your sadness where it is less pleasant). 

But that doesn't actually mean that it is objectively better to be happy all the time or at a specific time. I generally end up feeling better, calmer and more at peace if I acknowledge whichever emotion I happen to be feeling at a time and honour whatever message it is bringing me. I often experience problems if I ignore my emotions or mask them or pretend that I'm feeling something I'm not.

Two: happiness looks different and is brought by different things for everybody, especially neurodivergent people.

Here's a sky to gaze at from yesterday

Today I will likely not be displaying any heightened emotion. Firstly, autistic people tend to display their emotions differently from non-autistic people, but also I generally feel at my best when I am not experiencing any heightened level of emotion, positive or negative. Many people enjoy extreme happiness or excitement, but these create disturbance in my physical and neurological systems which is unsettling and "stressful" in a body-brain way rather than a cognitive way (if I am very happy or excited they are good things but still create strain on my systems and require recovery, rather than replenishing me). So top of my emotional heirarchy would probably be "calm" or "peaceful" or "content."

When I am feeling at my absolute best, it is not astounding to see, nor necessarily apparent to others, but I am enjoying a state of non-happening, non-stress, just being how I am in that moment. This is why I like time to enjoy something that brings me happiness: I gaze at the birthday candles until they have nearly burnt away, drinking in the moment of glow and stillness, or I linger by the glorious sunset or majestic waves for longer than typical, bathing in every sensory aspect of the calm and awe it inspires. Stillness and calmness are when I feel at my true "happiest."

Visiting my Geordie Peggy
and tea at THE BEST Thai
Restaurant. And yes, we're
both autistic so we always
have the same thing! A
wonderful day, but exhasuting.

Today I stayed at home and watched my church service on YouTube. I have done too much people this week and it has been getting more and more imperative by the hour that I do something to sort this out. The peopling I have done has been so enjoyable, but I went overboard (being sociable on two consecutive days), being out of practice at scheduling because of lockdown! My brain is also trying to deal with some nasty stuff mental health-wise and that takes huge chunks out of my coping resources and notches my mood down and "negative" emotions up.

So today I was church at home, and that was just right. We managed to move this afternoon's appointment to yesterday. Basically I have managed to cancel nearly everything I would have been doing today. Mr Peggy's work day got extended slightly. I am wearing joggers and fuzzy socks. I came downstairs to balloons and pressies but no people. I have been alone for five hours and will be for two more. I have finished my jigsaw puzzle and now I'm writing a blog post. Next I will clean out the guinea pigs because hopefully then it will be Sunday (not going to church has made a confusing rift in my routine!). 

This would be a disaster of a birthday for many people, but for me it has worked out perfectly. Last night I was frustrated and upset that I was feeling so completely rubbish and that it was going to be my birthday just at that time so I wouldn't enjoy it properly. But now, I am decompressing. I am feeling better. I am looking forward to Mr Peggy coming home and to spending the evening with him, opening my presents and cards and quietly watching some unemotional TV. I have had a morning of stillness and I am several notches calmer than I was: the space I made for myself means that in spite of the week behind me, I am enjoying my birthday. It might not be the birthday you would want and it might not look how you expect a birthday to look, but my happy is not made the same way as your happy; my stress is not made the same way as your stress, and my most enjoyable day is not made the same way as yours. 

So no need to feel sad for me or judge the way I choose to spend my special day (generally, I prefer same to special, or my special in small doses amongst plenty of same!) - this is the one day of the year that I can jolly well do what I like, and this is what I liked today!

Birthday Bunting Banner 😍

Working from Home

I have never worked from home before. My job is not one you can do from home: it involves being with people in person. You cannot provide personal care for somebody who is 15 miles away. Video interaction is not accessible to the people I work with (and it is difficult for me!). Pretty much zero of my daily work activities can be undertaken remotely. 

And yet I find myself embarking on twelve weeks of working from home. Because of the government's pandemic guidance and my employer's duty of care to me I am no longer allowed to attend work in person other than to collect and drop off work. My duties completely change overnight. My work environment changes. My daily routine and weekly routine change. The amount of interaction I have with adults changes. 

Working three days a week was the perfect balance of people and isolation, productivity and relaxation, structure and freedom. I had learnt to manage my energy balance and mental wellbeing well enough to stay well and function in a way I am satisfied with more of the time than not (and using the support I have available), and to enjoy my life, on the whole. 

And now everything changes. Again. I know everything changes when baby comes anyway, but that is different: I am busy, I have a focus, things will naturally change and find their own rhythm, and I have had nine months to prepare for it. 

This change is not optional. I was in denial about it for a long time after the possibility was introduced to me, and naively thought I might be able to fight it, but it turned out to be one of those "choices" a bit like the "if I don't make this 'choice' they're going to section me" ones. So I didn't pick it, I am not enormously prepared for it, it is a big unknown, and despite the fact that I will still be working it involves a lot of time at home, which is well documented as being a stumbling block for my mental health. 

On an autistic level the change to routine and to nature of my work is problematic. I like my life to be in boxes, and different ways of spending my time are contextualised by environment so to have work and home in the same place without a transition time is difficult. Work is a large part of the rhythm of my week and helps me mark the passage of time. There will be more time in my day to fill as I won't be travelling. I struggle to transition between activities when I'm at home (autistic inertia) so I can get stuck doing one thing which turns out not to always be great for my body or mind. 

On a general human being level the change to interaction levels is problematic. I need people and I need not people. At the moment that balance works pretty well. My need for people is fulfilled by work and Mr Peggy and the odd one-to-one socialisation but I will lose out on the best kind of interaction for me: where I am parallel with others: engaged in the same task and just interacting between ourselves as and when we choose.

On a more personal mental health level the associations of not being at work are problematic.

Almost exactly this time last year I came back to live at home and due to covid thwarting my original plan to return to work before coming home, I had a month not working before I began a very phased return. The time of year is already difficult with memories (see my previous post), and being at home feels like a replication of that time. Driving home after my last day of school brought memories of the drive home from hospital, and of previous ends of year that were full of sadness and anxiety. 

I also worry that the combination of being of work, not feeling great and waiting for a change to come will take me back to September 2019 when I was home from work unwell. I wouldn't have thought of this except that my first trimester felt very much like that indeed, and I was still working then. I struggled immensely with those mental effects of the first 13 weeks of pregnancy (although it took me a while to pinpoint exactly what it was!) so it does now occur to me that I am again entering a similar situation.

I am trying hard to focus on the positives of being at home. I can be flexible with my time and arrange my support throughout the week to help me cope. I can conserve my energy for things that I want to do - as the exhaustion of being in the third trimester increases I won't have to save all my energy for the physical demands of my job and I will likely be able to work for longer. As lockdown eases I will be able to get out and about more, to meet with friends, to join my in person yoga classes and gain interaction in those ways (although this also brings some unease because it doesn't feel right to be out enjoying myself in person when I'm not allowed to work in person). I will have more time and energy for preparing for baby as my travel times will be gained back. I have a great support network who will do everything they can to help me cope with this time and maximise its benefits.

Let's see what happens.

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.