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.