Embrace the Chaos

Jay | 26 | they/them | AuDHD | hEDS | AN | CPTSD Started as an ED recovery blog/scrapbook type thing, I don't know what this is now.

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01.08.26

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.

Truthfully there were many times in the past that I hoped my AN would end my life. Something I'm rather ashamed of is that a lot of the time deep down I still find myself wishing it had. I feel like I'm only still going and I'm only still relatively well because 1. I no longer have the drive and energy to be as actively engaged in my ED as I was when I was younger, 2. My current levels of chronic pain and the fatigue feel like as much as I can cope with without the physical side effects of starvation on top of them, and 3. My fear of being hospitalised again for my eating disorder and going through the hellishness of that far outweigh pretty much everything else (so I am effectively maintaining my health out of fear of punishment for not doing so - which feels like a pathetic source of motivation for staying well).

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01.08.26

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?

Sometimes I try to shove this feeling down. Other times I get completely overcome by it and completely break down. Recent discussions on trauma therapy seem to have been magnifying it for me. Also just thinking about how I've reached an age I never really anticipated reaching. Someone else also told me they didn't think I'd still be alive by the age I'm at now a few months ago and that's been sitting in my brain making me feel weird for some reason since then.

[deweydell25]

(via GIPHY)

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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.

There is a lot of health based and NHS based chaos at the moment as usual. I'm being assessed for POTS. I'm trying to get clarification of the outcome of the assessment I had for (C)PTSD because things feel confusing. It turns out my local ED service decided ARFID does fit my struggles just before they discharged me. They wrote this but didn't tell me. I wonder if that's part of why they discharged me as someone I know said their friend got a referral to them rejected based on there being no treatment pathway or no staff trained in ARFID within their service.

I have an appointment to see a private dietitian who specialises in neurodivergence, chronic illness and eating disorders next month. I'm stressed by the judgements I'm getting from my family for my very same-y diet that they say isn't balanced enough so I want help to make sure my diet is balanced. I also want help to find safe foods I can prepare myself when I'm struggling with executive function and fatigue because every preprepared thing I find to be manageable keeps getting discontinued by my local supermarket. I booked to see her because she did a webinar with EDS UK and seemed really nice but I'm scared because my previous experience with dietitians have not exactly been pleasant.

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12.05.26 // I am tired and in pain but I'm happy with how my hair looks since I last got it cut so I'm going to celebrate that.

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02.05.26

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.

On the topic of diet (TW for eating disorder stuff - for clarification I feel like these issues are more ARFID-esque than anorexia related) every time I try to branch out slightly because people tell me I should, and I find something that becomes a safe food in the supermarket, it seems to get discontinued soon after. I don't like/am embarrassed by what my diet looks like and it stresses me out that when I try to change it this happens. I wish I could live on supplement drinks so I don't have to deal with all the anxiety and exhaustion around working out what to eat, preparing it and making sure I have things in stock. And also if they were prescribed no one would be able to judge me for a very samey boring diet because it would be due to a medical prescription and look less like my own choice. A better alternative still would be learning how to photosynthesise so I don't even have to eat. But unfortunately that's not physiologically possible.

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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.

I unexpectedly met someone I hadn't seen in nearly a decade who started coming regularly to the church I sing at and it's been so nice to be back in touch with them.

[i-will-recover-tomorrow]

[2productive]

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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.

Mental health wise things have been messy. I am having an assessment tomorrow for suspected PTSD or C-PTSD which I am massively scared about. I can only hope something helpful comes of it.

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I spent Sunday night and most of Monday crying and screaming in overwhelm. I was too honest about what's been going on in my brain recently to people during this. The crisis team got called and they are coming to see me tonight.

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.

The crisis team is for people who are at serious risk - which I am not because of my lack of drive to do anything dangerous. I'm waiting for them and feeling absolute dread about it and I don't know what to expect or what to do.

[18thcenturythirsttrap]

Petition: Limit the sale of fireworks to those running local council approved events only

Ban the sale of fireworks to the general public to minimise the harm caused to vulnerable people and animals. Defenceless animals can die fr

Again, if you're in the UK, please consider signing and sharing this petition.

I understand that some people may believe it's fine for the public to be able to have their own fireworks displays in gardens etc. But one problem is that it's not just one or two nights a year anymore. Fireworks started going off around my way on 27th October, and they're still being let off this evening. That's two weeks of fireworks every single night, going off at any time, with no way for anyone not involved to know whether they're ok to put their kid to bed, or to take their dog for a walk, or whatever. And I can't imagine what it might be like if you have PTSD and find sudden, loud noises retraumatising.

The other thing is that not all private individuals keep fireworks to their own gardens. For instance, there's a small park opposite where I live, and back on 27th October people were letting off fireworks there - despite the fact there are public footpaths going through the park, so there was a serious risk of injury to anyone passing by.

(Graphic from The Firework Campaign UK)

It's not a matter of sad sacks being killjoys - fireworks are bloody dangerous because, when all's said and done, they're explosives. The law recognises this when it comes to manufacturing, storage and sale of fireworks, but it's very weak when it comes to what happens to fireworks post-sale. They're really not something that just anyone (even if they are 18+) should be able to let off up to 16 hours a day, 365 days a year, wherever they want.

[fibromyalgicaf]

Hey if you have chronic pain, you gotta remember that the cognitive load of dealing with that is exhausting. Just that alone. Never mind what else you've got going on.

You're not lazy or being dramatic; you're overloaded.

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Random and probably rather unhinged thought of the day:

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?

If only the laws of physics could permit this. 🙃

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I did something that felt right in the moment but now I'm worried I shouldn't have and that it was malicious.

I was taking part in a group workshop this morning. It was a one off thing with people I'd never met and who I doubt I'll meet again.

One woman started talking a lot about fasting and how wonderful it is and how long she fasts for and how many days per week. It made me feel awkward.

Later on I ended up in a one to one conversation with her. I told her I had anorexia. I wouldn't normally so willingly tell a stranger about it but I of wanted to hoping it would make her think twice about who she was going on about and advocating fasting to. I don't generally find the words of people without full blown EDs triggering. I can usually rationalise thoughts that they bring up with what I know about nutritional science. However I know stuff like this can be derailing for some.

She actually responded to me telling her I have AN in a pretty understanding way so I feel a bit bad now that I tried to call her out in a potentially embarrassing way.

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30.08.25 // An unexpected but wonderful occurrence - I was planning to get guinea-pigs in my flat now I'm settled and my parents were saying for ages that they thought it might help me to have the company of animals here. I'd ordered a cage from Kavee as I saw them recommended on various forums, but today I happened to go to the pet shop with my parents who were looking for cat stuff, and I fell very much in love with these two sisters. The shop doesn't allow for reservations so I took them home today in a smaller temporary cage we got from the shop (which the shop people said would be good to have anyway for things like quarantine if it becomes necessary).

They need some time to settle in but I got these photos for the brief moments they came out from the hide. The next challenge will be naming them - I'm so indecisive and bad at choosing names for anything - whether it be a real animal or a cuddly toy.

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People with hypermobility - do you have any recommendations for a good mattress (available in the UK)?

Someone else I know with hEDS recommended one to me but I looked it up and it was very expensive (somewhere near £700) and beyond my budget.

I've been referred for an OT assessment and I might potentially be able to get an orthopaedic mattress through them, but I'm told this could take months.

I'm currently using an old mattress from my parents shed that they hadn't got round to getting rid of and it's terrible. I wake up in so much pain on it. I got a new one that my mum found on sale for £40something to tide me over until I have an assessment (if I get one). It's somehow even worse than the old mattress.

There are so many mattresses out there with prices that vary wildly.