What is this post even about?

I'm trying to write a post that feels like it needs to be written, but nothing I write feels quite right. Usually when I don't quite know what I want to write, I start typing and something forms itself that seems to get whatever I needed to get out of my head out of my head. As it were.

But I've tried this one several times and it's still not coming together. I want to write about how the events of a year ago are affecting me now, about how life is different and how I feel about it all and what the brain does and what still affects me and how I am coping with returning to all the previous bits of my life that went on hold. But I can't seem to gather my thoughts or pin them down. I can't find the nub of what causes me trouble and why. I can't identify the things that are happening in my brain or make sense of them. 

Sometimes I'm overwhelmed; sometimes it's like it switches off and none of it seems to matter, but this is accompanied by a sense of foreboding that it hasn't gone away - it's just hiding, ready to pounce when I'm not expecting it. Sometimes I'm too weary to care, but I know that is temporary too. I need to find a way to unravel everything that has happened, to acquaint myself properly with facts and feelings and integrate it all into my story so it stops jumping out at me, incessantly demanding attention, sending me alerts and notifications and generally causing trouble.

Ideas on a postcard please!

29th September

This night a year ago was the last night I spent in my own bed for nearly eight long months. I was trapped, terrified and almost hopeless. The following day I ended up in hospital.

This year I have just got back from ballet class where the familiar syllabus is like an old friend, constant through everything that changes. I have jumped and turned and been en pointe. Last year I could barely walk a few steps. 

Tomorrow I will go to work, to my wonderful new class of little people with huge personalities. I'm enjoying them so much, perhaps all the more because I only got two weeks of last year. 

It should be as simple as that. I was barely able to stand for a minute or two, to speak more than a couple of words together or to concentrate on anything for more than a few minutes. Now I can walk in the countryside, dance, drive my car, fly on zip lines, go to the shops, relax on my own sofa at home with Mr Peggy, going where I want to when I want to and doing what I want to. It should be that simple. 

In the hospital I found hope and fear in equal measure. To begin with, enormous relief that my ordeal was over, everything stopped, no more fighting. Peace at last. Hope for freedom and life to return. The first night's sleep I'd had in weeks. But the darkness didn't leave; it wasn't that simple. 

There was pain, fear of the immediate reality and of the future. Gradual realisation that this was going to be the long haul. So many experiences that overwhelmed in so many different ways, which I still haven't processed now and don't know how to (sometimes I think I have more problems now than I did before!!). 

The struggle continues daily, well multiple times daily. It rarely leaves my thoughts. I don't always win. Emotions and memories party in my brain and body uninvited and I struggle to cling to what other people tell me is the truth. 

But today and tomorrow I'm trying to focus on what I can do that I couldn't do before. This time last year I was deluded enough to think I could be back to school by half term. I was off for the rest of the year. This year I will be there tomorrow and on the first of October, and through November and December and 2021, full of life. 

A different path

A year ago I was a good way along a treacherous path, with the danger increasing daily. I was terrified on that path in that dark place but all other routes had long since vanished beyond my ever-diminishing sight. Soon the fear faded into numbness and the darkness seemed normal, the path familiar. Awareness shrank and life became a one-track survival challenge from one moment to the next. 

And in another way I was blissfully unaware of the depth of the danger I was in. I knew I didn't like it and I just wanted it to be over, but to be honest, judging by other people's accounts I still don't quite accept how bad things really got. 

A year later. So many wonderful wonderful people have given me so very much. The help I received when I continued (and continue) to make poor choices feels too much; undeserved. I am so grateful to each person for each moment of care - I can't put into words what those moments are and how precious they are and how each one becomes a stone in the new path I'm trying to build that leads out of this place.

A year later. Why do I want so badly to run right back to the darkest place? Why does the thing that brings me only danger and that wants to steal my life feel like a place of safety? Why am I constantly drawn there, wanting to visit, to stay a while, hm maybe I'd like to live here.

Everything in me compels me to be there. I need to be there. There isn't another choice - that is where I should be. Yet I have to walk away. Each step is fear and horror, where it should be hope, joy and freedom. I've had so much support, so much sense, so much time, I'm sorry I can't see what you all see, but I hope the fact that I'm still trying to walk away shows that I trust you. That each time I find myself heading back towards the darkness I ask for help, I turn around and I try again despite everything in me screaming at me that I'm destroying myself and leaving behind everything good and safe. I hope that shows the value I place in the people who help me. I'm trying to trust you that this path I'm building will be worth the pain. 

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.

New Year Post

For the past couple of weeks I have had three or four pending blog posts floating about in my head, logically resulting in no blog posts actually being written. So I have sat down to try and disentangle them and transform them into vaguely intelligible form!

I'll start with the expected "New Year - looking back - looking forward - with a touch of sickening sentimentality" one. And then I promise I'll get back to autism! Some interesting things I've been thinking about to try and figure out enough to condense into bloggery... anyway...

As I have taken stock of my adventures with Brian during 2018 I have been pleasantly surprised by a few realisations. When I compare my current state with the Peggy of a year or a year and a half ago, I am experiencing things I never believed I would actually experience, and neither was I sure that I wanted to. Some of these changes have even come about in the space of the week or two that this post has been swimming in my mind, forming and reforming itself to keep up with my changing perspective.

A year ago I was working 50% of my full time job, only going in for half days and finding that something of a struggle. When I returned to full time I battled anxiety attacks most days at least once and spent an awful lot of time crying in bathrooms. This month I took my first day off sick and since September have only had two incidents at work that required support from others. Not a perfect clean record, but progress I could not dare to imagine a year ago.

Progress in recovery for my specific mental health condition (which I don't discuss on this platform) has flourished lately. The months and months of hard graft working for what I didn't believe I wanted is finally beginning to pay off. Sometimes I genuinely believe that getting "better" actually is better. Just the last week or so I have felt the first breaths of freedom from my disorder. I have hope of a life beyond: the life that I had wished I dared to believe in but couldn't risk.

I am learning to treat myself with compassion. To accept the days where I need to go at my own pace, not shower until lunch time, wear joggers and snuggle down with my pets. To be kind to myself when I “fail” or fall short of my perfect ideal. To turn down the social occasion without (with less…) guilt if I need to, to do what I can not what I think I “should.” To ask for space or time or explanation when I need it.

I am learning to participate in my own life, to risk making choices or allowing my preferences to show. To let the feelings happen. It hurts a lot. I chicken out very often. I don’t like it. I prefer the safety of numbing and ignoring the feelings with destructive behaviour. But I know it doesn’t work. I’ve tried it. It’s not sustainable, and it’s not the life I want to live.

To get this far I have had many months of therapy from a psychologist who has helped me understand myself, my “what”s and “why”s and how to help myself, and most importantly, shown me that I can and am allowed to help myself. Her consistent voice is beginning to counter that of the ED and tip the balance of whom I believe.

This being the NHS, our sessions are about to come to an end, and I am trying to take the lessons I have learned and allow myself to feel the fear and sadness that this brings. In some ways, I’ve only just begun to really be able to talk about the things that matter, and with another couple of months I could be better enough that I would be equipped to keep going. This lady has heard things I doubt I will ever utter to another breathing being (as well as enabling me to utter things to other breathing beings that I thought I never would utter!), and I have invested much into allowing her to help me. She has helped me a lot. I won’t see her any more, and all that knowledge will go away with her and I will be left with the understanding and skills she has shared, to go forward my own way. It’s a lonely, scary and sad prospect. I hope I will do her proud. And I hope that if I don’t, I will forgive myself, pick myself up and keep on trying.


And the wonder of the thing is that in just the few days since I wrote the last four paragraphs, I have grown in hope, in confidence of the possibility of that hope being fulfilled, and in assurance that I am on the right path and I want to be on it. I honestly didn't see this coming, and especially coming so quickly. To have that inner reassurance (and the amazing support of some stalwart Peggies rooting for me all the way) and strength before I finish my therapy is a completely unexpected gift that I couldn't be more thankful for. I'm under no illusion that I won't come across setbacks and crushing doubts as Brian fights back, but I know that freedom can exist on the other side and it is worth fighting for.

So here's to a year of stubbornly practising self-acceptance and self-compassion, exploring and enjoying the experience of allowing the stalwarts of Team Peggy to support me, and seeing how many breaths of freedom I can breathe.

The elephant in the room

Most people who know me will by now have some sort of idea that my mental health has been taking a bit of a battering recently. It's not great, my natural coping mechanisms are not healthy, and my work has been impacted, which is a line that I have always considered unacceptable to cross.

It's funny really, because I spend a reasonable amount of time promoting awareness of mental health issues and encouraging openness and conversation about mental health, yet I am still so very guarded about my own experiences. Perhaps I am not as stigma-free as I would like to think, or perhaps I just believe that I am somehow exempt from the compassion that I want others to experience!

BUT I am taking baby steps in learning how to live a better way.

I am learning to listen to myself, to act on the gut feelings I have about which situations I can manage when, and what I need to do in my unstructured time (or "down time" as those who don't frequent my work environment would say!). 

This isn't always fun or glamorous. It means letting people down (again unacceptable by my "rules"), letting myself down (cue even more Bad Brain Stuff), missing out, being boring, looking lazy or unreliable (another of my greatest fears).

As yet, admitting that I should avoid a situation doesn't even mean enjoying some quiet time to myself: it tends to mean a long battle with guilt, feeling worthless and useless, like a drain and a waste of time and space.

It is also risky: others may not agree with or understand my decision or preference. Those who know me well know that if I indicate a slight preference or wish for something to happen that is a sign that it is so enormously important to me that I have taken the risk to express it, no matter in how tiny or inconspicuous a manner. Those who don't will easily walk over the herculean effort I have made, completely invalidating it and making it even worse the next time I consider trying.

When I do succeed in listening to myself, articulating my discoveries and following through on them, and am stuck in that thought/feeling battle, I am learning to employ some "self-soothe" tools to help me to regulate and stay or become calmer. This is an approach introduced to me by my mental health team and is often used with people who experience high anxiety or distress. It may sound a bit whacky or irrelevant, but because of my awareness of the power of sensory experiences I had a fairly easy time embracing the idea (having said that, I thought I was doing it for about 9 months until I had one of those moments of revelation where suddenly something makes even more sense!). It still feels very wrong to care for myself when I feel that I have done something wrong, but I am learning that it is necessary and beneficial. It works really well as a calming toolbox for me, and with calmness comes the possibility of movement (both figuratively and literally!).

I am VERY SLOWLY learning to try and share with other people a tiny sliver of what is going on. I hate it. Every fibre of my physical being screams not to do it: it is like a complete block - a near impossibility. It is not safe at all in my mind, and fraught with risks and fears: I won't be able express what's inside, they won't understand what I am expressing, I will cause them discomfort (eg. fear, sadness, guilt), I will waste their time, they will be annoyed with me (even if they don't show it) or disregard the importance of what I am expressing, that they will think they understand, but not actually grasp it, and on and on and on. People trying to find out what is going on can make it even harder for me to share.

Occasionally by some miracle I manage to include somebody in what is happening in me (poor longsuffering Mr. Peggy and Ma Peggy and a couple of invaluable Work Peggies!). Sometimes it helps in some way. I'm hoping that through learning to talk about things with my psychologist it will gradually become more possible with other people. 

The "mental health" (or "mental illness") road is one that I am inclined to share even less than the autism road, but I think it is important to acknowledge it, even if not to go further in sharing it. Perhaps one day it will become as "OK" for me to talk about as my autism is now becoming, or perhaps not, but for now I will keep taking the little steps that appear before me which seem to be right to take.