Energy, comfort zones and friendships

The importance of boundaries, managing my energy and pacing myself.

Managing my energy is of utmost importance for me. If I do too much, push myself, when something unexpected happens, that will send me into overwhelm and exhaustion. When that happens I find it much harder to manage everything in my life and struggle to mentally let things go so I can rest. I then feel stuck in anxious/stressed limbo about all the things that need doing that are building up (dishes, washing, cooking, etc) and find it difficult to rest to recover. This can very quickly become a vicious cycle in which I am almost always very overwhelmed and in shut down so am not able to think clearly or manage to keep on top of basic responsibilities. If one thing in my life gets out of balance then it's like a tidal wave of overwhelm is unleashed and I find it incredibly difficult to feel rested and able to get on top of everything again. 

I am aiming to work very hard to manage my energy this year and pace myself. I need to.

I am in the process of setting up a coping folder with prompts for when the overwhelm tidal wave hits to help me lessen the impact. I am aiming to have systems set up and organised so that when the overwhelm hits I am able to use my systems to help me get through it. I can do this. I have a much better support system this year and am in a better place mentally and emotionally. It is a work in progress. I am doing this with my disability support worker.

Extra activities and appointments outside of my comfort zone

I only have so much energy most of which goes on managing daily life and family responsibilities and appointments. Trying to fit in building friendships and building connections is very overwhelming, exhausting and stressful for me. I often don't have energy for it or I get caught up doing things to keep up with the day to day and forget. By the time I remember to try and fit in friendships I'm far too exhausted to get words out and articulate what I want to say or write so I don't bother. It's too much a lot of the time. I find navigating social situations very stressful and exhausting. I tend not to bother as I simply do not have the energy for it nor do I want to waste my energy worrying about it. I don't have the energy, in particular emotional energy to worry about if I'm saying/doing the right thing, or if I've offended someone and not realised (I tend to be fairly oblivious in social situations as I'm too overwhelmed and anxious just trying to keep my head above water socially to even notice or think about if anyone is offended) or if I've said too much or too little or asked any questions or whatever else. It takes a lot of emotional and mental energy for me to be social and to be in a place mentally and emotionally to be able to make friends. So I tend to avoid it as I have limited energy which goes to managing my issues, parenting, appointments, household, organization and cooking. Each of those tasks in and of themselves take a lot of energy and I am rarely if ever performing at my peak for each of them.

I have been going to choir for a couple of weeks this year and I went a couple of weeks last year. It was good for awhile but now it is taking it's toll on me.
I am considering quitting choir as it is taking a lot of energy to get myself organised and get there on time and prepare myself and a meal before 6pm. I have found that by that time of the day I fade quickly and have no capacity to engage in conversation to interact with others, let alone navigate all the social crap (as described above) as I'm too worn out and my brain is at a low level of function by then. I just go to choir, sing and try to figure out what my notes are and listen to others in my part sing so I can get my note (definitely do not have energy to fit in practicing at home) and then try very hard to keep my eyes open and my brain at some level of function so I can just process the notes and singing. Then I pay and go home. I don't chat to anyone or anything because I'm so exhausted and just want to get home and wind down then sleep.

I need to take my son to the dentist for the first time. He's nearly 4. I'm so anxious about it for a number of reasons. 

1. I know he will not cope with someone poking around in his mouth. He finds us brushing his teeth hard enough and will only tolerate it for so long. My own anxiety about him not co-operating and feeling out of control adds to his anxiety. 

2. I don't drive so the added stress of organizing transport and trying to fit in with someone else's times to get there, adds to my executive function and anxiety about organising it.

3. I have health anxiety so hearing what the dentist has to say (it's an unknown which makes me feel unsettled and anxious) is one more thing which overwhelms me. I have put taking my son to the dentist in the too hard basket for awhile because I have had a lot of other stress and trauma going on. 

Avoiding it but knowing it needs to be done adds to my anxiety. I am worried how I will manage my son's possible meltdown at the dentist on top of my already high anxiety about organizing it and going. I need to find an ASD friendly dentist if there is such a thing. I doubt there will be one within walking distance for me which adds to my stress. I don't know how to face it. I am working on a plan for how to approach it with my disability support worker, which has really helped take the stress out of it.

This is my thought process for most big things that I know need to be done outside of my comfort zone, I end up frozen with anxiety about it and unsure how to move forward.

The other reason I have not been able to face anything outside of my comfort zone is because I have come to realise that I only have enough energy to manage the day to day, even then I find it very overwhelming and tiring. Anything beyond that, such as appointments and whatever else needs doing outside of day to day living takes a lot of energy, more than I have, so I tend to avoid. If something comes up unexpectedly, and needs doing, that makes it harder to face and re-adjust my plans. Coping with change is difficult for me. I know if I pushed myself to go when I wasn't fully prepared and feeling like I had enough energy to do it then I would end up feeling very burnt out and would take who knows how long to recover. The thought of that scares me, having experienced a breakdown. I don't want to end up there again. I work very hard to manage my energy and manage the day to day.

So here I am able to function fairly well just with the day to day but add anything else which is not part of my normal routine and suddenly I am not able to manage so I avoid it and just focus on what I can do, not what I am not able to. Even though I know some of it needs doing which upsets me as I don't know how to fit it in and have energy for it and figure out how to approach it and have energy to do that. It's all very argggghh!

Friendships.

I find people very confusing and unpredictable which is stressful for me. I don't have energy for their unpredictable, confusing ways, their assumptions, their unsaid expectations and the unsaid social rules. It's too much. My brain can't process it or make sense of it so it basically I have a brain fart and don't worry about dealing with people if I can help it. It's all a big confusing mess which I would rather not stress or worry about. I have had too many painful and upsetting experiences with friendships not working out to feel safe enough to open up to many people.

Having written all that I do like socializing and connecting with people but on my terms and when I have the energy for it which isn't often and they have to accept me as I am and make an effort to understand me or it won't work out because I do not have the energy to deal with manipulative, passive aggressive, petty, judgmental and toxic people. Finding friends who are not like that is a challenge as I have to go through crappy people to find them and I am finding I do not have the energy to deal with being hurt by people. I need friends who accept me and understand me and don’t expect more than I can give. Not being able to drive and get to places adds to my stress about friendships because it is isolating and makes it harder to connect with others.

I am realising I do not have the energy to worry about if I am doing the right friend things and chatting enough, catching up enough, etc. It is really stressful, upsetting, confusing and draining. I will contact people and connect with people when I can and they are free to connect with me when they can. 



I am working on living my life in a way and at a pace which suits me. I am working on letting go of things I know I do not have energy for and learning how to manage and make plans for things that I know I do need to do.

I found these two blog posts really helpful to how I need to live my life in order to cope.

Learning to exhale by Briannon Lee.

In a bubble by Amy Bean

Back from my break

I am finally in a place where I have space in my brain to write. My life is going a lot better than it has in a long time. I am coping so much better, for a number of reasons, more on that later.

This is my first post in many months, more than 6 months. I was not able to write for a long time. I wanted to write, but forming my thoughts into words was too difficult for me. I was in a dark place for most of last year, dis-associative, overwhelmed, depressed, highly anxious, feeling very unsupported and isolated. I felt useless and like a failure. I found it very difficult to face reality and interact with people, even my own family (son and husband). This was hard on them and I felt guilty about not being able to be there for them as much as I would like. It was a tough place to be. I felt so locked in myself a lot of the time. A number of events led to me falling apart and withdrawing into myself. First my psychologist abandoned me at a time I really needed extra support and left me in a bad way, this was a professional I had seen for well over a year and had come to trust and believe they had my best interests at heart. Unfortunately this was not the case. The impact of this person's actions was heartbreaking and devastating for me. I was already not coping very well, then to have this person's unprofessional behaviour added to it, it was too much. It was very traumatic for me and I am still healing from it, more than a year later. For a long time I did not realise the full impact of what had happened, it took me time to process it and realise how bad it really was. When I finally processed it fully that is when it really hit me. I was further traumatised as a result. I had real trouble validating myself and believing that it was really that bad, especially when no one else really understood or got it or validated me. 

Then when I dared to share my story about what happened in a couple of ASD women's groups due to others starting threads about this psychologist, I was shut down, threatened, and basically told it was my fault. This further traumatised me. It was extremely hurtful and upsetting. In this state I had to seek out another professional to re-diagnose me in order to be eligible for disability. It was so difficult to come out of myself and find a professional who had the right qualifications. I had no choice though as I knew I needed the support and respite that gaining disability would entitle me to. I went to see a psychiatrist, who gave me the diagnosis I needed. I got paperwork filled in to apply for disability and sent away for that. Thankfully I got it.

 I was traumatised by how the psychiatrist treated me. I felt very dehumanised and picked apart, it was traumatic and upsetting. In particular in one session, the final session. I will never forget how traumatic it was. Prior to that session, things had been okay and I had been somewhat oblivious to how badly he treated me. My Mum told he that he always stared at me the way he did this session but I had never noticed it. She came to sessions with me, thankfully. This particular day he gave me an extra dose of medication (the same that I was taking) on top of what I what I had already taken. The medication I was on takes effect within 5 to 10 minutes. After taking it, I became more aware than I had ever been. I noticed how intensely and scarily he looked at me. I felt he wanted me to give eye contact because I was on the medication so I did and it was incredibly painful and scary. I became more mute as time went on. I left the appointment and was shaking uncontrollably, I felt really emotional and upset. I rang and explained this to him. Due to the fact that I was already traumatised by my previous experience with a professional, I did not manage this well at all. I withdrew further into myself. I stopped seeing the psychiatrist as I was far too fragile and vulnerable. I had to in order to protect myself. When I got home from the appointment, I proceeded to have a two day meltdown where I was crying uncontrollably, feeling incredibly anxious and unsafe. I could not get his eyes out my mind, they were so intense, piercing and I felt like he was bearing into my soul. It was a terrifying experience. I became paranoid that he was out to get me for awhile after that. It took me 3 days to finally feel somewhat calm, and even then I was not sleeping well or able to manage daily life well. I thought about how he had spoken about me in all the sessions I went to him, like I was some sort of animal to be observed. He talked about my behaviours in this distanced observing way. That upset me even more. I felt incredibly vulnerable and scared that I was an easy target for abuse and to be taken advantage of and treated bady and not realise. I withdrew into myself and found interacting with people really hard. I did not want to be treated so badly ever again if I could help it.

Things got really bad for me after this. I felt incredibly alone and isolated. I felt like I was in a glass box and could see my life go by, but wasn't really living. It was all just passing by and I didn't really care. My husband was worried about me and sought out organising extra respite for me through local respites. He did all the paperwork as I was in no place to do so. It took awhile to hear back about it and I did not get support until late last year, around September. We applied around May. During that time I was struggling on my own with little support, it was really, really tough. 

A bit later on there were three upsetting and hurtful interactions online which further added to the pre-existing trauma I was going through. It was too much. That was the final straw for me. I withdrew into myself completely. I withdrew from Facebook and focused on managing my own issues and not letting anything else get into my little bubble. I focused on my own healing and recovery. The break was very good for me. It was about 6-7 weeks. I started to feel a little happy once again and that things in my life might get better. I started to have a little hope again.

During my facebook break I sought out another psychologist and had a couple of sessions with her. The first one was ok. The second one was horrible and upsetting. My need to repeat things lead to it not working out with this psychologist. She did not understand me which led to me perseverating verbally with her analyzing everything I said to mean something I didn't mean. It was frustrating and upsetting. It became a vicious cycle of me repeating myself and her analyzing me. Me trying to correct her and explain myself and her analyzing it to mean something else. I was in shutdown by the end of the appointment and felt she was treating me like a child. I left the appointment and ran to the toilet and cried, sobbed uncontrollably actually. It was awful. I never went back to see her. So unhelpful and unsupportive. That experience did not help me to feel safe seeking out the support of professionals, considering my previous experiences. I did not feel safe enough to trust them, let alone open up to one. 

Even my Dr was not entirely supportive of me, in particularly regarding what happened with my previous psychologist, the one who treated me so badly, that broke my trust. She said I needed to let it go and focus on living my life, which at that point and the state I was in, was impossible for me. I was in a super sensitive, highly anxious state, so any hint of invalidation and non-support would upset me and trigger me. I would withdraw further into myself, feeling even more unsupported and isolated. It was awful.

I hated my life a lot of last year, felt stuck, and didn't know how to improve things. I had almost no hope that things would ever get better and that really, really depressed me. Every time I tried to add one small thing to my life, it would be too much and I would end up a stressed and anxious mess about it. Then I would cry about it and feel really frustrated. This was a vicious cycle for most of last year. I gave up in the end and just watched TV shows, that was about all I could manage. I did some basic housework, but barely any cooking. Parenting was really difficult and exhausting. I often felt I was failing my son. I did the best I could with the little I could give to him. The mess and chaos in the house added to my overwhelm and I felt helpless to sort it out. I struggled to connect with people, I wanted to interact online but found that really difficult. I couldn't put my thoughts into words. I wanted to connect and interact, but the thought of trying to put everything into words was way too hard. So I didn't bother. This added to my feelings of isolation and that no one cared about me and what I was going through. 

Thankfully I had a couple of real life friends who were supportive of me during this time, as best as they could be as they have issues of their own going on. One of them came to my house and helped me organise and de-clutter my son's toys, my sewing area and set up my own little calm down/happy space in the shelves above my bed. I was truly grateful for their help and support. It means a lot to me. Those things helped me feel less overwhelmed by the chaos in the house. It helped me feel less stuck. It made a difference in my life.

My Mum suggested a narrative therapist counselor to me, whom I emailed. She was away for a period of time and could not see me till later in the year. That made it difficult as I knew I needed support right there and then. 

I had several Skype chat sessions throughout the second part of the year with a woman who offered to help mentor me, she was studying psychology so offered them for free. These helped me, but I still felt really isolated and struggled to really explain everything that was going on for me. I did try to and I think she understood that things were difficult for me. I don't know what I would have done if I had not been able to chat to her, even though I was not always able to put all my thoughts into words and explain the depth of my pain and trauma, just being able to talk about stuff and feel heard, helped me feel supported and not so isolated. 

I was going to this mental health centre and had sessions fortnightly for awhile with a social worker there. She was really supportive and understanding of what I was going through, particularly with what happened with my previous psychologist. I found it stressful and exhausting having to leave the house and catch public transport to get to sessions though. Towards the end of last year, there was a change in funding and ownership which meant she was no longer working there, so I stopped going. I didn't have a relationship with any of other other workers staying there so didn't bother, I had no more energy to keep going.

While I was without much support all this drama came up online regarding my previous psychologist and another writer. It was extremely triggering and upsetting for me. I had been going somewhat ok until it all came up online. In hindsight I should have taken a facebook break and let it go, but instead I got sucked in and hyper-focused on it. I was deeply disturbed and traumatised by how I saw this psychologist threaten legal action, gas-light and try to silence anyone who told the truth about her and shared their bad experiences. I have since learnt of many more people who have been treated really badly by her, which is a relief that it is not just me. Very sad that so many people have to suffer harm from one person. Through this difficult time, I withdrew again and ended up in a triggered, anxious vicious cycle state. It was awful. I was angry and frustrated that I had to deal with this crap again. Thankfully healing came from the experience as I was able to connect with others who had similar experiences, which helped me feel validated and not so alone. Being able to talk about my experiences and not be silenced, treated badly and told it was my fault really helped me start to properly heal. That was huge for me. For the first time I was able to talk freely about what happened to me and not be silenced, victim-blamed or threatened. It was a relief.

Towards the end of last year I started seeing the narrative therapist and the respite support came through, which meant I have a disability support worker who came to my house. Those two supports have been life-changing for me. They came a bit later than when I desperately needed support as by the time I started seeing them but at least I got the support I needed. Between their support and me managing my energy better, having stronger boundaries and not allowing myself to get sucked into other's issues, that has really, really helped me to get into a better head space. 

My counselor is amazing! She is incredibly supportive of my journey, very validating of my issues my story, and trauma. I have sent her these two articles (throwing away the Master's tools and neurotypical psychotherapists and neurodiverse clients) and she didn't bat an eye-lid. In fact she found them very helpful in her journey of understanding me and being able to help me. That is when I knew I had found a good counselor who would support me and help me learn to cope better in a way and at a pace that suited me.

I started taking a couple of amino acid supplements known to help anxiety, stress and depression. Those really helped me. I noticed a difference after a month or so of taking them. I felt more clear headed, less overwhelmed, less anxious and less stressed. I felt like I had space in my brain to take the time to notice my feelings, triggers, and thoughts and be mindful of them. This hugely helped me to stop myself from heading into a vicious cycle triggered downward spiral. That, combined with what I was working on with my counselor (Acceptance commitment therapy - ACT), helped me take control of my out of control thoughts and emotions.

Slowly things have improved. I am coping so much better this year. I am extremely careful about managing my energy and what I take on. I have very strict boundaries about my interactions with people and will not allow myself to get sucked into their drama or issues. Thankfully I have not had much issue with friendships this year and when there is an issue I am able to see it clearly for what it is and not let it get to me as much.

Having better support has made a massive difference in my ability to manage my life and my recovery journey. Feeling heard, validated, understood and respected has really helped me to cope better. It has helped to stop fighting so hard to get what I need. I feel I can relax now and actually enjoy my life, instead of getting stressed about every little thing that happens and worrying that I will be treated badly, invalidated, misunderstood or taken advantage of. 

Here is to a better year for me! I am looking forward to living it and not giving a fuck about anything but what I can manage.

Sensory Deprivation

When I was in high school I came across a book in the library quite by accident. I borrowed this book, it was called 'Wise Highs' by Alex J. Packer. It changed my life. I remember looking through it and coming across a section on sensory deprivation. I was intensely drawn to the idea of sensory deprivation. I longed to try it out, but did not have a wardrobe big enough and I couldn't figure out how else to do it with privacy with the rest of my family around. I put it away in my mind to refer to when I had a chance to try it out. Fast forward a couple of years and I'm in my first year of University. I'd left home for the first time. I was struggling to cope with all the changes, struggling to adapt and manage on my own. I had recently moved out of an abusive boarding situation into a house with other women my own age. The room I rented had a big roomy wardrobe. I remembered reading about sensory deprivation from 'Wise Highs,' and decided to set up the wardrobe as a sensory deprivation space. I got excited because now I was finally able to try it out for myself. I set myself up in my wardrobe with pillows, blankets and ear plugs. I forgot the world exists. I let go of everything. I let my mind drift and dream. It was a relief to hear and see nothing. To escape from the busyness of the world. It was very peaceful and calm. I stayed in my sensory deprivation space for a decent amount of time. I can't remember exactly how long. I emerged feeling peaceful and ready to face the world again.

Since that first time of trying sensory deprivation, I have set myself up a sensory deprivation chamber using various wardrobes wherever I have lived. I craved it. I longed for it. Since my diagnosis of Autism and fully understanding of myself, using sensory deprivation makes so much sense. I instinctively knew what I needed before I understood (I knew I was different, I just had no idea why) my neurology and did what was best for me. It helped me cope and face the world again many times. I am so grateful that I accidentally found 'Wise Highs' in my high school library all those years ago. I have now bought myself a copy of the book as it has other great stress relieving ideas.

I forgot all about sensory deprivation and the book after I became a mother. My mind became scattered and I regressed. I experienced burnout.
I am slowly regaining my sense of self and embracing who I am. I am starting to cope better, I am remembering things I used to do before I became a mother. I remembered my 'Wise highs,' book. I did remember a couple of years ago that I used to do sensory deprivation but I didn't fully comprehend it and couldn't bring it to the fore front of my mind in order to actually do it. I was too burnt out and inert then.
This afternoon after a busy week I was feeling particularly overwhelmed and overstimulated. I was trying to talk, trying to figure out what to do next, and I just couldn't do or speak that easily or well. Words were hard to get out. My husband Atrus could see I was struggling. He suggested I go and have some down time. I went and listened to a guided relaxation exercise which helped me feel a bit calmer but I could still hear a lot of noises over the top of the recording. I was anxious and stressed. I tried deep and slow breathing to calm my racing heart. I could not slow it down. I finished the relaxation exercise only mildly calmer than I when began.

While I was listening to the guided relaxation, I suddenly remembered doing sensory deprivation and my Wise Highs book. Soon after I had finished listening to my relaxation exercise, I looked through the book case for the book. I found it easily, thankfully. I read the section on sensory deprivation. I decided that I needed to set myself up a sensory deprivation space in our walk-in wardrobe, which I proceeded to do. I used my ear plugs, sleep mask, blankets and a pillow. I lay down, focusing on slowing my breathing and racing heart. It was so calm and peaceful. It was a relief to be free of the majority of noise and light. I let go. I rested. I forgot about time, expectations and responsibilities. Soon my heart stopped racing and I felt calm. I emerged 30 minutes or so later, feeling much better and able to cope better for the rest of the day. I am going to continue to use sensory deprivation regularly to help me cope with life stresses and wind down.