Shutting down

Hello. I have been feeling more withdrawn and isolated than usual for a few weeks. I have been trying to hide it and pretend to cope but I really struggled last week and I feel like my brain collapsed on Friday and it has stopped trying to cope. There's no energy left.

I was meant to meet a new support worker today and I refused to take part and shut myself in my bedroom until everybody realised that I needed it to happen another day and finally left me alone. Normally I'd feel embarrassed and ashamed about that behaviour but today I just felt desperately overwhelmed and felt as though I did what I had to do to cope. I couldn't face new strangers in my flat today. I couldn't face anybody in my flat today.

On Friday, I had one of the most public meltdowns I have had for a long time. It left me embarrassed and exhausted. I think I am still recovering from it. Then over the weekend, people were knocking and banging on the door of my flat and playing loud music. Today, the music started before 6am. I have headphones but they don't always block it out. Also, with my headphones on I need to turn the TV up and I'm scared that then other people will complain about me. 

My period started last week, so I am feeling poorly anyway. I also went to a play about an autistic woman, which was great but energy zapping.

At the beginning of last week I got shouted at by another lady in the flat below who accused me of walking into her flat in the night and stealing. I would never even think about going into another person's house to do this so it upset me. She was also cross about people walking down the stairs because she can hear it. After this I had a short meltdown. I got told this might be her own mental health difficulties. It is the same lady who plays loud music under my bedroom. I am worried about leaving the flat without a good reason because she keeps coming out of her flat to check who it is. I hate shouting and conflict and I just want to be left alone.

I have been waiting since May for a letter from ESA for when I need to go to a face to face appointment and now it's nearly the end of September and the only time I hear from them is when they text me for a sick letter. My support worker called in August and was told they'd sent a form to my GP and it could take weeks to get a letter. It is making me anxious.

I was supposed to go to a family wedding yesterday but I texted last week to say I wouldn't be able to make it. My family don't understand me or autism so I am expecting a backlash for this. I need to plan the journey to my parents' this weekend and I am really scared/anxious. I also feel under pressure for birthdays/Christmas/family events.

I feel like i am being a terrible friend because i don't (can't) reply to text messages very well, if at all.

I am frustrated with myself because I had to leave my job and I am so desperate to have a career and be independent and have a steady life and be anonymous like other people but I don't know how to achieve it. I am intelligent, but I'm not sure where to put it to make good things happen.

Sorry about all of that. I'm just a bit overwhelmed and needed to try and process why. 

  • I'm sorry I don't have some good advice for your situation but just wanted you to know that there are lots of us here who totally understand what you are going through. Be kind to yourself.

  • It's good that you were able to speak to him about it. 

    I'd find it difficult not knowing when I was moving too. Shoving you is very aggressive and that must have been really hard to deal with, but I think viewing it as being because of her own difficulties is the best way to do it. Hope the chat with your support worker goes well tomorrow.

    That's a good idea! What kind of models do you build?

  • You’re very welcome. I’m glad I was able to help a little and hope you can get things back on track soon. Thanks for the tip about the play—I hadn’t heard of it but will definitely look into it.

    If you ever want to chat more, please feel free to message me. Blush

  • Hello, thank you for your reply and sharing your experiences. It was good for me to be reminded that I am not alone in these experiences (as sometimes the world can feel very lonely and frightening), and that I am quite a normal young lady learning to manage autism as an adult.

    I am sorry that you are having neighbour problems too. I am worried about telling anybody specifically because I find confrontation very challenging and I don’t want to make it worse, but there was another incident earlier so I feel as though I need to do something. When you wrote about hiding in your flat all weekend it resonated with me because that’s what I do too. I am fortunate that if I receive unexpected letters I am allowed to give them to my support worker to open them as I can’t cope with shocks like the ones you have had whilst on my own.

    I recently went to see a play called “The Duck”. It is autism-friendly (they give you a bag with things you might need like ear plugs, fidget toys and information), written by a woman with autism, acted by a young woman and it tries to provide insight for people who don’t have autism to gain greater understanding, but was helpful for me to watch somebody have experiences similar to mine. This is the website if you (or anybody) is interested: https://autact.co.uk/ . I would one day like to take my family to see it in the hope they might be more forgiving! I am getting better at blocking out lectures from relatives, and instead trust in myself that I am trying my hardest- CBT has helped with this.

    I am pleased that you differentiate between ‘selfish’ and ‘self-preservation’. I often get accused of being selfish or inconsiderate when I’m just having to protect myself from a tough time. I find it hurtful, but I hope it is misunderstanding rather than truth. I find it difficult to explain this to my family, but I might try and explain using ‘self-preservation’ in the future. I think your boyfriend is correct. It is a difficult think to do because I spent my whole life being told that I’m wrong or defective in some way, which became a belief. I am practising accepting that it is okay to not respond, or decline an invitation, but I’m still very much learning that this is acceptable. I think it is great that your boyfriend can help you in this way. I hope he can help you with HMRC or the mortgage company?

    I had been trying not to make a GP appointment as I always feel I’m wasting their time, but I think I will ask my support worker to help when she comes tomorrow. My GP is very good with me, and often if there are no appointments for a few weeks then she will call me at a specific time. I will see tomorrow. I am feeling a bit calmer today after being given some space.

    Thank you for your suggestions, support and understanding. It was very helpful Blush

  • Hello Robert123. Thanks for your reply. Yes, writing definitely helped with processing it and understanding why I’m finding things a bit much. It’s like speaking, but easier.

    The neighbour you had makes mine sounds quite tame by comparison! I will try and make sure I don’t end up giving her my number, I’m hoping it can be sorted so that she just leaves me alone.

  • I spoke to one of the people who watched the meltdown today and thanked him for being patient with me.

    I am in temporary accommodation so I will get to move on eventually, but nobody can say exactly when- which is stressful all on its own! There was another incident with the lady today where she ended up shoving me and then slamming her front door. I am trying to understand and respect that she likely has her own difficulties of some sort, it's just hard when I have difficulties as well. I have asked my support worker to call me today because she is coming to my flat tomorrow morning and I would like to ask her if we can make a plan to help with it.

    I bought a new model to build, so I will put on my ear defenders and just focus on that for now!

  • I am frustrated with myself because I had to leave my job and I am so desperate to have a career and be independent and have a steady life and be anonymous like other people but I don't know how to achieve it. I am intelligent, but I'm not sure where to put it to make good things happen.

    Likewise, like you wouldn't believe. You are very understandably—and completely entitled to be—overwhelmed. It sounds like you have a huge amount going on at the moment that is largely out of your control, and that always sends me into meltdown too.

    Briefly: I have ongoing issues with noisy neighbours as well (both next door and downstairs), which I find sensorily excruciating and emotionally stressful and draining; the management company is taking legal action against the latter, but she decided to try to confront me about it on Friday. The result? I hid in my flat all weekend with the doors locked, curtains shut and phone switched off, and I haven't been able to walk for the last three days due to the way the stress has affected my legs. Then, yesterday, I received a letter from HMRC fining me for over £2,300 for something I haven't done, and today I've had a letter from my mortgage company telling me to do something that, it turns out, their IT system and help desk physically can't do. I also woke up with my period this morning, have an impacted wisdom tooth, and over-heated when the sun came out... at which point I went into full meltdown (crying, rocking and punching myself). So please trust me when I say, I completely understand. Unlike you, I'm really fortunate that my boyfriend and my dad are both incredibly sympathetic although other family members far, far less so. At my niece's christening a few weeks' ago, my uncle spent a good 15-20 minutes lecturing me about getting a job, as if I'm currently not working and sleeping on a floor out of choice. Were it not for the fact that I was so completely blind-sided by it and so completely exhausted from just being there among people, I probably would have walked out to have a meltdown in private.

    Just like you, I'm intelligent and I want to be independent. I think sometimes we have to be what NTs call 'selfish', but what I call 'self-preservation'. Self-preservation does not make you a bad friend, daughter, sister, niece or anything else. It makes you a normal human being trying to cope with a challenging disability in a very unsympathetic and chaotic world. All I want is a quiet life and I have no idea how to achieve it either, but I did have a lightbulb moment at the weekend when my boyfriend said this: Everyone else seems to do what they want and ignore what we ask of them, so why don't we just do the same? When people give you either/or options, figure out what you want and need, and if that includes not responding at all, then don't. Easier said than done, I know, and right now I have no idea what to say to HMRC or my mortgage company, but clearly I know I can't do nothing. However, as long as I can't walk, I can't get to the postbox to send a letter, so I might as well just focus on trying to regroup. When my physical, mental and emotional strength returns a bit, I'm sure the solution will be apparent.

    Can you make an appointment to see your GP? I know you have to wait weeks sometimes, but maybe if they saw how distressed you are getting they might speed the process along? It's cruel that we have a system in this country that takes advantage of the very nature of the disability a person has to avoid providing adequate care and support. I hate making phone calls and doing the whole face-to-face thing, and it's wrong that those are the only ways to access help. Can you ask your support worker to make the appointment for you if it feels too much at the moment?

    You are no less intelligent or independent for needing some extra care and support right now, even if that support is just everyone else giving you some peace and quiet for a few days. Of course, if someone said that to me right now, I'll tell them they don't understand and to f**k off. Okay, so maybe scratch that and replace with this: Take some slow, deep breaths and remember, you are not alone in how you feel right now.

    Take good care, sweetie.

  • Just writing on a website like this about your meltdowns and problems with,  for example neighbours, should help you get it out of your system and relive stress. 

    I wish I knew about this site when I was dealing with nutty,  nosy neighbours. 

    I once had a neighbour who's obsessive behaviour made my life and half the streets life a living hell.

    After I moved away,  she still phoned me regularly,  sometimes three times in half an hour, in a temper,  shouting and screaming, complaining that I didn't phone her often enough.  In the end I changed my number.

  • Thanks Aidie Slight smile You give great advice in this forum.

  • u're so brave  I admire your bravery. keep coming back to this blog.  U are a path finder we need u here. Same thoughts extend to you  as well:)

  • I'm sure they'll understand. Meltdowns are so visibly distressing, I doubt anyone would think you were doing it on purpose. 

    I only moved out of my parents' house last year and lived alone for the first six months. I found it really difficult to adjust for quite a while (it's a little easier now my partner's moved in). It does sound like this lady has some difficulties - it's just really unfortunate that it's adding to your stress levels.

    Talking to your support worker is a good idea. It might be worth asking for their advice on dealing with the conflict with your neighbour too.

    I know it's tough when you feel stuck. Just give yourself some time to process everything. Do the little things that make you feel better (hobbies, special interests, maybe a cup of tea if that's your thing). You won't feel like this forever - things will start looking up.

    You're welcome - glad I could help in some way Slight smile

  • Hello DuckBread. That was a really great response- thank you. 

    It was in front of people I knew, so I am hoping they understand why and that I didn't mean too. Those sorts of meltdowns are just horrible.

    I live on my own (though I have support). It is my first experience of a self-contained flat and being responsible for my own front door and I'm still working it all out. When I first moved in, I let a police lady in who had come to see the lady below so I suspect there's some difficulties it's just unfortunate I'm not great with any conflict!

    I am going to ask my support worker on Wednesday to help me plan the train and journey at the weekend and write it down.

    I think possibly I get more stuck on these sorts of thoughts when I am stressed. Hopefully if I give myself time and space I will get more positive.

    Thank you again Slight smile

  • Hi, Duckeggblue (one of my favourite colours, by the way). I'm sorry to hear you're going through a tough time.

    I also had a public meltdown recently and felt so embarrassed at the time, but the likelihood is that you'll never see those people again. Try not to give yourself a hard time about it; these things happen and it's nothing to be ashamed of.

    The lady who lives near you sounds awful, but as you said, she may have mental health difficulties that cause these extreme reactions. Do you live with anyone else, or are you on your own?

    In terms of worrying about events, try and deal with one thing at a time. If you think of something you need to do for Christmas, perhaps you could write it down, but try to focus on the event that's happening next (the visit to your parents). It's challenging enough to get through each event, so trying to plan for everything at once will just add pressure and make it harder to think. 

    I understand the feelings of frustration, but please don't measure yourself against other people - even the ones who look like they have their lives together (great careers, steady life etc.) often have challenges that other people don't see. You're doing your best you can and that's all that matters. There's nothing wrong with taking time to rest when you're overwhelmed.