More Letters

Today is a wading-through-metaphorical-treacle day. A zero executive function day. A day where I keep finding myself motionless, staring at the items on the supermarket shelves and the world seems distant. 

Only the items on the list are bought, and the ones that left any room for interpretation are left unbought, because I don't have the capacity to make decisions about what to buy. The shopping has been brought into the house, but not yet put away because I just don't have the spoons. Having dealt with the full-change-of-clothes nappy incident at the beginning of the shopping trip, we also had to make another toilet visit before home time to deal with my anxiety digestion. 

It's the end of what I'm affectionately calling Stressy Season - the longest of my calendar-based trauma triggers - which spans six weeks through September and October. This year I finally have a name for all these things that happen to my body and brain when it is reminded of certain past events.

PTSD is not just the curled-in-a-ball-on-the-floor-crying-rocking-unable-to-speak-occasionally-with-screams-coming-out-or-hurting-of-self panic attack after the fire alarm. It's not being able to concentrate on what you're doing, it's dread when you look out of the window, it's feeling irritable at the slightest thing, it's going to lengths to avoid places and things that make you remember, it's feeling sick all the time and wild bowels, and so much more.

Dem autumn leaves are well threatening...

Autistic people are more likely to get PTSD and are less likely to have it identified correctly. We are both more likely to end up in potentially traumatic situations and more likely to be traumatised by experiences not traditionally seen as traumatic. Because of this and our neurological differences we are less likely to see and be understood by professionals who deal with PTSD and thus also less likely to receive helpful support (which again may or may not differ from traditional treatment). I'm thankful that a year after one misdiagnosis I was able to access a second opinion, and that this person understood and was able to explain to me all of these things about autistic processing and so forth, helping me to understand and accept that this is a box that applies to me despite "nothing traumatic having happened" (I did tell the first person nothing traumatic had happened, so I guess it's no wonder they thought nothing traumatic had happened...). I'm not just making a fuss over nothing; my brain is trying hard to do a job.

The lady in the supermarket who commented "Don't worry, I'm amazed how well you're managing it all" when I apologised for forgetting to put the little divider at the end of my shopping on the conveyor belt (another sign my brain is not doing its job) had no idea what "it all" really was. To be honest, a baby in a sling, who was by that point sleeping, is no trouble at all, unless maybe she had clocked the previous blowout scene. I didn't even have Pre-School Peggy with me. "It all" for me this morning was PTSD and the fact that I had to collect my brain repeatedly on my circuit of the shop and coax it into doing enough of its job to get us by. Everybody has an "it all" every day, and maybe that lady realised. 

Be kind, you don't know what "it all" is going on for those annoying people you meet.

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.

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

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.

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 ASC becomes ASD: do I need help?

Although I technically class as having a disability, I don't tend to consider myself as disabled. Generally speaking I am well-enough adapted to function in mainstream life without my autism spectrum condition disabling me significantly. I know my strengths and weaknesses, I no longer feel that I must participate in situations I find especially difficult and I am surrounded by people (family, friends and colleagues) who understand me enough to allow me to function my best and partake in full time work, leisure activities and as much socialising as I require.

Recently it was suggested that I may find it beneficial to have some kind of advocate or support person to help me in certain situations such as medical appointments. I took this as very caring overdramatisation (definitely a word, if you were wondering), along with many of the other things that were said at that time. People who care about me and want the best for me but take things a bit too far.

As I reflected I realised a part of my mind knew they were right about many of the things, but the uppermost part - the poorly part - disagreed. They suggested a person to support me again. I considered the idea enough to mention it to family members who very sensibly didn't take one "side" or the other, and merely allowed conversation around the matter.

You see, I have autism and a mental health condition, but I am highly functioning. I am fiercely independent and a perfectionist. I have always been a high achiever; someone who doesn't need help. This now means in my head that I don't deserve help, I am not eligible for help and that I am being greedy, wasting people's time and resources and being attention-seeking if I accept (or, perish the though, ask for) help. And if I tried asking once and was rejected, then no chance! And anyway, I've had loads of help for my mental health and my workplace go above and beyond to support me and let me perform to my potential.

Until yesterday.

I've had a recent health blip related to my mental health. I asked for help just before I wasn't able to any more, and then my brain went to the place where it didn't want any help. Everybody had stepped into action but I didn't want it. They were all looking after me when I couldn't do that for myself, and I had a follow-up appointment yesterday when things had evened out somewhat health-wise.

I was on a high when I came out: the doctor was happy for me to be working because I'd told her I felt better, my tests had improved. In fact, she said that perhaps I'd had a virus the previous week accounting for my symptoms. Yippee! Back to normal just like I wanted.

But half an hour later I found myself in tears. I realised my colleagues were absolutely right. She hadn't asked any of the right questions, and because of that I hadn't given her the right information. I didn't know how to tell her, or correct her mistakes, or question her conclusions. I didn't even process that she had got it so wrong until after that. When the people that know me - Mr Peggy, work Peggies, CMHT Peggies, urgent care practitioner Peggies and even mental health charity Peggies - are all concerned, that should make me question the judgment of one GP who gives a different opinion. I let her tell me it was all fine. That's what my sick brain wanted to hear anyway - it will have a field day with that. But there's a part of me somewhere that wants to be well, and if it saw this happening to someone else it would shout, and shout loudly.

She was right in a way: I am genuinely feeling better and I am genuinely fit to be at work, but she was not right about the rest of it and I did not have the processing capacity or the communication and social skills to address that.

So I come to conclude that perhaps I am more "disabled" than I thought. Maybe I need some help.

I'm so thankful I have such wonderful Peggies looking out for me

I'm not 100% convinced so if anyone has experience of using an advocate or somebody to help them with navigating difficult situations, (eg. helping them to identify and communicate what is in their head and to work out confusing questions about recovery, work, autism and mental health) please get in touch - I'd love to hear from you about how it worked, what worked, what didn't etc etc.

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.