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 "no" is not an option

As a follow-on from my previous post, I want to share an experience I had in the hospital. Be warned this may be upsetting (powerlessness, medical procedures), so please consider first whether you wish to read this post or not.

I had one of the most terrifying moments of my life on my third day in hospital, and here I am not exaggerating. I consider myself highly privileged that this is a feeling I haven't experienced until now: I know that many, many people have, both in a medical context and other situations.


I'd had a piece of equipment fitted on AMU on Tuesday. This was painful, upsetting and far worse than I had imagined it would be, but I had been warned they are not pleasant to have fitted, so I coped pretty well. Even when I could hardly utter a word afterwards, and move/breathe little without coughing. The doctor didn't seem confident and sure enough after a multiple-hour wait and a move up to my ward, as soon as eyes were cast on the positioning x-ray it was out as quick as you can say Jack Robinson.

I prepared myself for the re-application (sooner than I thought - I'd originally been told it would be the following day, but with good support I coped when it was sprung on me that it would be immediate), this time by a reassuring, experienced nurse who was very calm even though it was really difficult to get placed, took his time, mixed humour with understanding and we all got through it together. It was still painful and traumatic but after doubt about the position imagine the party in Side Room 28 after x-ray finally confirmed it was correctly placed. Three people have never celebrated bodily fluids so enthusiastically!

I went to bed happy that Tuesday night. The equipment was finally sorted, I was on the right ward that knew how to do things, the nursing and care staff were super attentive, supportive, helpful, and enabled me to take on challenges I didn't think I could achieve. What a healing environment. This was beginning of the way up. I slept.

Just before waking, I dreamt I pulled the equipment out and it had to be reinserted. The panic was real. I woke. The panic had faded but I was a little unsettled by the whole experience of being here, in hospital, monochrome, bright lights, machines and equipment. And the kind night staff from the night before had finished their shift. I managed to keep my anxiety under control. Then I pointed out the leakage from my new equipment overnight and a fault was discovered. "It'll have to come out."


Well that was the end of that. I burst into tears of panic. Nobody was going near me again thank you very much. There had to be some other way. An unknown doctor came in with a friend early on morning ward round to explain to me. "It's not supposed to hurt" (Ah, I'm glad you told me that - it mustn't have hurt after all, my mistake...??!) "It's very unusual to have one damaged, you've just been very unlucky" (I'm glad. Does that solve the problem though?) All I could do was sit and sob and refuse and make a request that I see the doctor from the Liaison team before they did anything. I am so unbelievably glad my mental health team had drilled into me that I could do that. The doctors left me in shutdown, simply saying "We'll come back after ward round and do it then."

It was at that point that I realised I had no choice in the matter. If I kept on saying no, I would simply be presented with the Mental Capacity Act and the procedure would go ahead anyway. I have never experienced such a feeling in my life. Complete powerlessness. Utter terror. No escape. I am a compliant person and if I get round to saying no there is a mighty good reason. Such as "I don't see how I can actually survive that happening again." But nobody knew that, and even if they had it wouldn't have made a jot of difference.

How often do our children with complex medical needs experience this? What does that do to a person, to repeatedly have to keep living through that? Babies are operated on without anaesthetic. Adults and children with learning and physical disabilities are abused. Men and women are assaulted.

I was lucky. My request to see the Liaison team worked not because she said anything different, but it bought me about 4 hours of processing time. I managed to calm myself and face the idea of allowing another traumatic procedure. She also made the suggestion of a tiny dose of Lorazepam to ease the process, which nobody else had offered (although I do note that when the doctor came to do the procedure later he didn't offer it or wait for my request as she had said but explained that he would bring it and I would take it... I suppose he probably had a rather inaccurate understanding of me as the only time he'd ever met me previously was in meltdown that morning...). Turns out, third time lucky. It worked how it was supposed to. Not comfortable, but quick and pretty easily bearable once complete. Others are less lucky and for that reason I will not forget those moments of utter powerlessness and panic.

Surviving Hospital with Autism

Some of you will know I've had a recent stay in hospital. The experience was a mixed bag, some of which I would have expected, and some of which I didn't consider until it happened. Writing this helped me reflect. It's a jumble of thoughts and may not be very coherent but I wrote it for me, not for you! If for any reason you fancy a snapshot of life in hospital as an autistic person, here you go. If not, move along to a more interesting post.

Questions to consider (not addressed in order or even answered, but points for thought by you and me!)
What should be minimal expectations?
What is good care?
What is really excellent care that makes all the difference?
What could hospitals do to help autistic patients? What would have helped me?


"Welcome to hospital/Ward XX" pack would have been helpful. Including

• What happens when on the Ward? Meal & snack times, meds times, staff changeover times, ward rounds, get up and bed times, if you are here more than X days you will be given an injection to avoid blood clots from immobility but you have a right to refuse this
• Whom to talk to about what: who does the meds, who do I ask if I need water/shower/toilet/something is broken (responsibilities of the different roles and what I might need from them - job title and picture of uniform?)
• Details of where to find information eg. where the board with staff lists for the day is (for the first ten days I would go to bed literally not having a clue who would be there when I woke up - whether I would have met them before or not, whether they would be kind or not etc etc), how to fill in the menu
• Details of possibilities/services eg. Going to chapel on Sunday and who to ask about this, Liaison Mental Health team, Chaplaincy, Learning Disability Liaison team, Advocacy? And explain what these services can do for the patient and how to access them.

An "All about me" for my file and maybe to put on my door or bed, just for really important things, eg.

• I have autism
• Please give me time to process information/decisions (come back later rather than wait 5 minutes)
• If I am distressed please give me my blanket
• I am very compliant. If I show noncompliant behaviour this means I am very distressed and struggling to cope. Please give me some time (30 mins upwards), an opportunity to talk with someone I trust (eg. next of kin/mental health worker/trusted ward staff) and explore the reasons with me before enforcing anything. Consider asking to talk to the person I trust, who can interpret my communication.

Things that happened

I worked really hard to try and ask questions I needed to ask, be aware of my needs, my right to exist in the environment and communicate those to others. This was exhausting.

I was very chipper the first few days, had a very skilled and compassionate welcome onto the ward, felt very safe, empowered, hopeful. But struggled with all the staffing changes, suddenly not knowing anyone, not knowing who to expect, feeling lost, small, scared and vulnerable.

It helped to be told specifically by two different people (community nurse and one staff nurse) "This is your express permission to ask for anything you need, or anything you want to know." This gave me the confidence to actually be able to be brave and ask some people some things some times. Often I found it difficult to think quickly enough to ask the right questions because you only see people very briefly and don't have time to process what they have told you, and therefore consider the implications of that and whether it inspires any questions. Equally, I often don't realise I can question things or that there is something else to know. I worked hard at writing down questions I had and being armed with them the next time that person popped up. Always providing that I recognised them, of course!

I had excellent care from my community team and the Liaison Team, who made sure I was seen every day or two (except at the weekend when they are on call) to check in with how I was doing and keep me updated on my plan and next steps. This was much more beneficial to my wellbeing/recovery than the actual "hospital treatment" as such, which was by nature very medically-focused. My hospital experience would have been unrecognisable and much more terrifying without them.

One professional wrote a plan without even speaking to me or telling me who she was - the only reason I knew I had been "seen" by her was that I was still on AMU so saw her putting my notes back in the end of my bed and her ID gave her job title. I'm glad I read what was there then, because after that I was told patients aren't allowed to just look at their notes, they have to make a request to see them. My mental health team are much more patient-centred and prefer to work by collaborating and sharing plans. This approach makes me feel safer as well as more empowered. Some members of staff were more willing than others to share details. I felt more able to ask some professionals than others. Most staff did introduce themselves, although I did have trouble remembering who they all were. Some staff (particularly MH) asked when they came in each time "do you remember who I am? I'm Dr Bloggs and you saw me on Friday in outpatients". That was really helpful.

When I thought to ask a doctor whether I still needed the cannula I'd had in a couple of days as it hadn't been used since A&E, he said I would be receiving my vitamins by IV, yet I was consistently presented with them orally. Taking them orally was really stressful. When I had good support I could manage, but wasn't sure why the doctors were saying one thing but nurses giving a different one. Little things like that as the ward settled into its routine did worry me, in case there were things I didn't know about that weren't being done right. It took a day or two to settle into all the correct observations being taken at the correct times. Yes I know I'm a control freak, but also, there are so many people working on so many things that it's really easy for things to get lost so I don't think it's necessarily a bad thing to be informed about what care or treatment you should be getting.

I had two big shutdowns within four days of being on the ward. The first was the understandable result of some slightly traumatic experiences in my first couple of days, that anybody who had witnessed would think reasonable but probably appeared out of proportion to the poor doctor who'd never met me before (see "When 'no' is not an option" post).

Wobble two came at the end of Thursday. My treatment had been upped late afternoon so I was feeling a little unsettled and I'd had a funny meeting that afternoon with my care co-ordinator (I wanted to talk about how I was feeling about things, but still had another visitor so couldn't access that level of content to discuss. Which also meant I felt we didn't get as far as we could have in conversation about next steps: frustrating). So I was a little wobbled by these things but looking forward to the night staff coming on, letting them know, being supported and getting over this hurdle. All the staff were different. It was so unexpected that I couldn't do the sharing even though they did ask how I was. I thought to ask a question I'd been pondering as to where I could find my notes and was informed patients aren't allowed to just look at them, they have to make a request. The spark was gone, I couldn't take the steps I'd been able to take in the previous few days and I felt alone, lost, vulnerable, misunderstood and a failure. What a difference exemplary care can make - the whole package, both bedside manner and sharing information. It all works together towards patient care that either intimidates and hinders progress despite medically improving or brings the kindness, hope and calm needed to move forward.

It was a bad night. I eventually slept a little. I determined that today is a new day. I got complained at by a woman on the bay for using their toilet, which I had been told to use (I usually use the other bay because it's closer but they had a long queue, so another lady from there had also used this bay). I didn't let her talk me down but was really upset afterwards. And do you know who saved this morning for me? My cleaner and the student nurse who was changing my bed. The cleaner was in the bay and took my part when the lady picked an argument with me, and when the girl came in to do my bed she was really kind, having a chat and saying if I'm feeling down and want to chat or anything just come and say hello. My cleaner came round at lunch time and had a good old natter about the lady and what else she'd been up to while he did my room. It doesn't matter who it is: those are the people that are doing patient care. The staff nurse, the cleaner and the HCA. Thank you for being light.

Later in the week I had a difficult night with events on the ward messing with my head. I eventually plucked up the courage to ask for something to help with the sleep/anxiety  (because it had been explained and reiterated by Liaison Team that this was acceptable and sensible in these circumstances) and the kind nurse from the first week went above and beyond the medication, coaching me through my distress, which led to a bit of a groundbreaking moment in recovery.

My community team similarly supported me through a massive moment in recovery with enormous patience, insight and understanding.

I was moved without warning from my side room onto the bay straight after an important and slightly overwhelming meeting. This is just a part of hospital life and there's nothing they could have changed about it, but it was difficult to deal with and led to the fourth wobble of my stay. I was less relaxed on the bay but coped surprisingly well.

I was always welcome outside at the nurses' station on a night if I had work to do or wanted some space or a cosy corner.

I managed to ask for most things I needed (although I never once used the nurse call button...), and on the days when I hadn't ordered food for a certain meal I was offered, in such a way that I could do more than I thought possible.

As I became more healthy I was more able to build relationships with people I was scared of to start with (and I became more familiar with some of the faces too), but I'll never forget what a difference it made that there were some that could bridge that gap for me when I was so poorly I couldn't do it for myself.