Embrace the Chaos

Hello, I'm a human who goes by J and is writing this post as an introduction to my blog. This is my corner of the internet which I initially set up as an AN recovery blog several years ago, but which has now become more of a vent space (although I try to post nice things too and reblog things I like or that resonate). I came here to dump my thoughts and other things in the hope I'd find people to relate to after having found comfort in reading other people's posts about their experience of an illness that I felt alone in.

Since starting my blog I've reached a point of stability with my AN. I don't really know if I want to call my journey to this point a recovery one, more of a learning curve in managing the illness so it didn't consume my entire life. I've also been diagnosed with a bunch of other conditions which I feel like are now consuming my life even more.

I've had a long ambition to get involved in natural history/wildlife study and research but I've faced so many hiccups in life that felt out of my control I don't know if I want to pin my hopes on any kind of ambition anymore. Having hopes dashed and watching aims become impossible is painful. Now I'm just taking one step at a time and vaguely hoping they will lead me towards a life devoted to a subject I hold close to my heart, but not trying to put an expectation on myself to actually get there.

Conditions I have (in case this indicates whether you might find my page relatable at all):

Autism

ADHD

Anorexia nervosa with ARFID tendencies

CPTSD

hEDS causing chronic pain and fatigue

Maybe dysautonomia, I'm still getting tested

Other things about me:

I'm a reluctant artist (drawing, watercolour and embroidery)

I'm a mediocre classical musician

I keep guinea pigs

I have a huge fondness for most non-human life forms. I won't start listening them because there are too many

I live in supported accommodation in England

I'm agender and use they/them pronouns

There's such a huge part of me that feels disgusted by how I am now, feels disgusted by how much I eat and wants to go back to how things were before. But there's another part that's both scared of changing my routine with eating from what it is now, and scared that if I do start restricting I will go past the point at which I spiral, lose control and end up facing hospitalisation - and that feels like a fate worse than death.

Along the same lines of my previous post, I realise I am now managing my eating disorder far better than I ever imagined I would (and far better than I felt I ever wanted to) - I suppose I'm in a state some would call 'quasi recovery' but I don't really see it as recovery as such, just getting by. People keep congratulating me for having got to this point and it makes me feel deeply uncomfortable because I don't like the fact that I have reached it.

I feel like this will come across as melodramatic but does anyone ever have the experience of overwhelming horror at things you've survived in the past that you hoped you wouldn't, and the fact that you're still here, taking up space, taking up resources when you 'shouldn't be' at this point?

20.06.26 // I am scared by how quickly the year is going and I have not really been using this account for a while but thought I'd come on and give an update with some exciting news (also to share obligatory Felix photos!) - I'll be going to university again from September. I applied to a semi-local university that it turns out still lets people do undergraduate degrees part time and got in! I'll be doing BSc Biology. I'm excited to study again but anxious about The Student Experience™ (i.e. the side to university that isn't studying such as lots and lots of socialising and a 'sparkly new adventure with newfound freedom because adulthood is so exciting') that I keep getting spammed with emails from UCAS about - I hate how much pressure around stuff like that there is.

I am also going on holiday for the first time in 5 years at the end of this month! I am going to visit some nature reserves in Devon and am very much looking forward to it.

I'm having a hard time. It's been getting closer to two years since I was last in a psych hospital and people keep saying how well I'm doing to have stayed out this long, and how far I've come but internally things feel horrible. I'm stressed, tired and in pain almost constantly. I don't want to keep living like this.

I've had far too many moments where I've almost wished I could be re-hospitalised just so people would stop telling me I was doing well and I'd feel less pressured to act happy (because I'm scared that if I'm honest about how hard things feel, people will A. get sick of me, and B. think I'm exaggerating because...well I'm not in hospital so I can't be doing that badly).

I also keep wishing I didn't live where I did. On the surface it's great - it makes it nice and quiet having a flat that is only mine, it's an objectively nice flat and I have my lovely guinea-pigs but I still feel extremely lonely in it and I don't feel very supported (I don't have much contact with support staff and I don't really feel comfortable talking to them mostly). I've been so much more tired and in so much more pain since I've been living alone and trying to manage more myself. I can't get help with things because my support hours have been massively reduced by the council's social care department, and I often don't get support in my set hours because either staff cancel shifts or I'm too anxious to go to the office and ask them for help even if they do come in. They also don't really understand my health issues and I've tried and failed to explain them to them. They also tell me I should be more independent anyway.

I wish I lived with other people but group homes haven't worked out. I need to live with other people who I feel I can trust, and who I'm not scared to be around. I'm not sure that's even possible given my support needs and my financial situation making me dependent on housing benefit. Also I'm so embarrassed by things I struggle with (especially my eating disorder and thus my diet) and living with other people would mean I can't hide them.

20.04.26// Last week was incredibly stressful. I had to go to the emergency dentist for wisdom tooth trouble and got prescribed antibiotics which my body had a rather scary reaction to. Thankfully the tooth ache is gone.

I had the second half of my trauma assessment on Thursday. They told me my case was complex so the NHS trauma service wouldn't have treatment appropriate for me. They said I present with the features of C-PTSD but because it wasn't clear enough to them how much my emotional, social and self esteem issues are due to trauma and how much they're due to autism they said they couldn't diagnose that. They said I definitely at least have PTSD so they'd write that in the report. I'm inclined to think there are clear links between the above issues and trauma, and when I told the people I spoke to a lot about trauma when I was deciding whether to ask for the referral about the conclusion that it wasn't clear enough if I had C-PTSD they said they disagreed. At least I've had my issues acknowledged. I will just be referred back to CMHT (who knows if they'll take me on as they already labeled me treatment resistant and discharged me about 4/5 months ago).

I saw a consultant about my craniocervical instability problem on Friday. The consultation felt really horrible. I felt like I was told off for a lot of things I've been trying and failing to control. I felt so embarrassed by myself I ended up crying in front of the consultant and all the way home.

He concluded nothing could be done unless I get over my eating disorder. And maybe I could wear a soft neck brace on bad days.

On to positive things:

My mum pushed my to start building the set of Lego plants that have been sitting in a box for month. I kept putting off building them because I wanted to do them at the 'right' time when I 'deserved' to. But I've started now.

30.03.26 // Long time no post. I'm not sure why I decided to post something today. I have not been writing here at all regularly like I used to. I feel like a lot of the community I used to engage with on tumblr has migrated over to Instagram. I'm not even sure if I should keep this blog or delete it at this point...if anyone reads this do you have any thoughts?

Here are some pet photos to preface this small life update. Have I introduced my guinea-pigs on here? They live in my flat with me and I love them to bits.

I feel in a very weird position at the moment. In some ways I have had a lot of luck in recent times - there are a lot of exceptionally kind people in my life at the moment who I am endlessly grateful for. Some serendipitous chance meetings have meant I am currently doing a lichenology based project at a nature reserve relatively near me, and that I have something to be hopeful about in the future. I have had contact with a very encouraging biology lecturer at a university not too far from me which to my amazement seems to still offer part time undergraduate degrees which most places in the UK don't offer. With all my health conditions I don't think full time study is at all realistic for me anymore but I still want to study. I've had some old school friends who I didn't think would want anything to do with me anymore get back in touch and that's been really nice too.

At the same time my brain is in a very dark place - which seems not to make much sense given the above. I think partially I am scared to have things I want to do that look somewhat feasible. I don't think my brain thinks I should be allowed such things. I am constantly angry at myself and feeling useless, thinking it would be better for everyone if I didn't exist, wondering why people say they like me and questioning if they actually do and if they secretly are really irritated by me, going over lots of things that have happened in my life and feeling regret that I survived them. I keep having waves of intense urges to do self destructive things to myself.

There is a lot, physical health-wise, that I am not coping well with at all right now that keep getting worse. Mainly it's stuff to do with my hEDS and the PoTS my GP suspects I have (but I am yet to be seen by a specialist in it) as well as some other neurological things.

Today I've just felt extremely tired and numb. I have just moved back and forth between bed and curling up on the sofa next to my cat and done nothing more. Although I feel like I want to end things and have done for a while I don't feel capable of it - previous attempts didn't come close to working and only resulted in hospital and my family being upset. Every plan I've made in my head to do something to myself recently I've found myself too paralysed by fear of physical pain, fear of hospitalisation and fear of upsetting my family to actually take action.

If only I could find a way to transfer nervous energy and tension into electrical energy.

I could make enough money to live off comfortably by providing people with my own renewable energy.

And in the midst of a global mental health crises, what better way could there be to tackle climate change and our reliance on fossil fuels?