My World Is Falling Apart

Hi Piki, nothing youve said is pointless. Its so amazing that you reached out like this and honestly I think and hope you are in the right place. Being on here literally saved my life

You mention failing in work life and home life. I dont know what to say about whatever is going on at home but as far as work goes, work is not the be all and end all for us. As a very wise woman once told me "These things are not always meant for people like us" If you cant do your current job then that is not your fault. Most jobs are designed for Neurotypical people and so there is no shame in us not being able to do them

Pikl said:

It feels too impossible to get through it, though I know there must be a way through, I'm just not able too see it. 

I felt like this recently. Its like there is no way out from the nightmare. It does pass though, it might feel like it right now at all but it does pass honestly. Ive been down that black hole and I can promise you it is not permenent

They dont have Talking Therapies in my area so not sure if they any good but my GP passed me on to Healthy Minds which was pretty useless as they forced me into CBT which is not really designed for autistic people

Just spend some time here among people who understand

Take each day at a time and dont try and think beyond it. Be as kind to yourself as possible and just know you are doing so much better than you think you are. It is your brain that is tricking you into thinking this is your fault

Pikl said:

I'm waiting for an NHS assessment as nobody believes my private one, apparently I show empathy.

It seems that they do not understand that autism as a spectrum condition involves lesser and greater extents of sense and sensibility ~ from the hypo to the hyper sensitive and everything in-between ~ whether that be in an empathic sense and or any other sense, and it also seems that they do not really comprehend that autistic people develop psychological and physiological health problems on account of not having been appropriately facilitated, identified or affirmed in regard to the particular uniqueness of ‘their’ autistic ‘individuality’ ~ either at school or also at work?

Pikl said:

I had private done in the middle of a depressive episode and the report remarked that I had a monotone voice, which everyone knows I don't, so the diagnosis is not seen as credible.

Monotone vocal interactions involving aptitudinal indifferences are though classic presentations of people experiencing depressive episodes or durations ~ where they feel ‘flat’ with a lack of emotional peaks, or that their ‘heart is not in it’ ~ i.e., not feeling emotionally committed to or engaged with others and or the events of life.

Was not your GP sent a copy of your diagnostic report to update your NHS records ~ as in with the NHS accepting your diagnosis from a qualified psychologist or psychiatrist, regardless of whether they are private or not?

Pikl said:

I'm having more and more responsibility taken from me at home, I forget to do important things and if I'm focused on drawing then that makes it harder.

If as it very much seems that you are somewhat overwhelmed and quite possibly caught up in a bit of negative feedback loop ~ getting progressively burnt out and therefore your restricted capacity to function diminished, it would not be much of a surprise.

Is work in itself proving to be particularly stressful, and or are you possibly going through a rough patch involving the diagnostic hangover ~ as normally lasts about four and half years or so on average?

Pikl said:

I've never understood who I am and now that I have a chance, it feels like I'm not permitted.

One of the things with social camouflaging and personal masking ~ is that when it becomes too much and people can no longer pretend to be inferior, mediocre or superior with other people, they have to lean to adjust to the mysterious confusion of their indefatigable self ~ as which is enlightening and vitalising.

Artists and creatives of all sorts tend to have more of a relation with their indefatigable self ~ as is more the case to a greater extent for autistic and other neurologically divergent people.

Pikl said:

This makes me feel like I'm even more wrong and broken than I had come to believe.

Individuality is not a crime but natural by design ~ and as such you demonstrate nothing untoward about yourself really; other than not having been adequately facilitated, identified and affirmed ~ in accordance with who you are indefatigably.

Pikl said:

I'm sorry I'm moaning and venting.

Apology so not required ~ and we thank you for facilitating this linguistic group hug and vent session.

Yeah, the storming off never seems to work. I will sometimes put my hands over my ears, I don't think I've quite fully grasped the concept that it's internal and not external. 

Somethings that I used to see as failing, when I realised the implications of having Autism became more triumph like in their aspect.

Simply not doing myself in at one point was a major triumph. Although I am over that now, I chose life. To be exact I chose to beat my own out of control life into submission. I'm not fecking leaving until I have won on my own terms.

Now one can take a tip from some groups in society and define your own reality.

Up to a point, after that it becomes madness when you start denying the very basics of reality, and will eventually bite you, so don't go mad with it, but you can try and acquire different viewpoints. Different ways of looking at the same situation. Comedians exploit this for comedic effect, and a really nasty thing when looked at from a different angle becomes funny. It is a process I personally am applying to all the traumas in my past. 

Really rubbish things have happened to me in my past and to a very diminished extent (I got something of a "grip") still do.

When I view just how "unlucky" I have been in some aspects, it stands out and can be viewed either with regret and an "I could have been a contender" mentality, (My dad died "wishing he'd travelled to the great wall of china", well he could have done that, and a whole lot more if he'd had the balls to do it, instead of sitting in front of the television so much..) or I can laugh at the absurdity as one might laugh at any other "unlucky soul" in a fictional story. 

However when someone's dad in 1987 (ish) in reaction to my latest story about how a joy rider had smashed his stolen car into mine outside my house, and thus killed my new enterprise, remarked " Sperg You are the unluckiest person I know" it made me sit up and take notice. A quick mental review of my misfortunes to date suggested that he had observed a statistical anomaly, I was at that time, just dogged with bad luck, and I needed to fix that. I learned that there is a whole mechanism behind what we call "Luck" and that people spend their entire lives trying to figure out how it works. I tried all sorts of occult endeavors to change my luck, and I learned THIS: Changing your luck in one specific area by "Casting a spell" IS DOABLE!! BUT, it makes no difference in the overall scheme of things, a rebalancing seems to occur.

To get a real difference in my "luck" I discovered I needed to change my own outlook on life. And that was not so easy to do.

But at least I knew what I needed to do. I kept an eye out for "lucky eejits" in the people I knew and I tired to see how their outlooks differed from my own. Eventually I came to see the truth in a phrase I'd heard a few times, "You make your own luck"...

I could fill a few pages with what I did and learned in order to change my luck, but it seems to boil down to this: If you want to have a "better" life, with more "interest and less adversity" you need to pick a side and be either "nice" or "naughty" in life. And pursue that hard...

Well, I don't know if that is helpful, but I can say that your post, IMHO is actually of much better quality than your one's three years ago. Everyone needs some help, in some areas of their lives and here seems a very good place to ask. Life seems to be a system of checks and balances, if you need help take it gratefully, and use it well, then if you still feel "guilty" (many do not!) then pass it on when you get the chance.

That Bhuddist stuff about "Karma" is very practical on a spiritual level, which translates into improved "luck", when viewed from my perspective. 

Thank you Ann, truly.

You're not a failure, and though I don't really know you, I think you're amazing! You're right, sometimes a break has to be forced. I do have half term off in 2 weeks, and that will have to do.

You've gone through, and going through so much. I understand the guilt. I've always felt I owed it to others to be all for them, to compensate for putting up with me. Now I'm in a position where I need it, but everything has fallen to me, because... well because of reasons that are complicated, and because I never stood up for myself before.

Please don't be hard on yourself, I know that's easy to say. You definitely need to put yourself first.

Hi Pikl :)

I’m so sorry you’re feeling like this. I’ve felt like this too - many times. Things build up and you get to the point where you feel totally overwhelmed. Totally. I’m really sorry. You won’t always feel like this. It’s not forever. You’ve hit a crisis point but it’s not going to be like this forever - you really can feel better. 
I’m also on a long waiting list for therapy. When I first went on the waiting list I was feeling absolutely desperate - like I couldn’t go on. I was crying every day and feeling totally overwhelmed. When they told me the waiting list was at least 11 months I thought I was doomed because I didn’t think I could last that long. Like you I couldn’t take medication - for me it was because of a previous really bad reaction to an SSRI that so frightened me that I’d never dare take medication for my mental health ever again. 
So I was left with little choice with the long waiting list but to try to help myself. Thankfully I have the support of my husband and sons - so that was vital. Do you have anyone close to you who is there for you?
But other than being incredibly fortunate to have a loving immediate family  I wasn’t able to access any help from outside. 
So essentially I’ve tried everything I can over the last year to get through this crisis period. I’ve had anxiety for over 20 years but due to a severe physical illness I was tipped into a much more severe level of it. It felt unbearable to be honest. But several months on I feel I’ve really made a lot of progress (still no sign of an appointment with the NHS - so they’ve been no use at all). 
I take the view that the causes of complex psychological problems are complex so there’s no simple easy answer - I think you have to look at the problem from many angles. 
One of the things that helped me take huge steps forward was a book called ‘How to be your own therapist’ by Owen O’Kane. I found this book in the library just by chance. I really recommend this book because it’s very straightforward but also brilliantly helps you to unpick some of the reasons we respond to things in the way we do - by getting to look at your own ‘life story’ and life experiences, upbringing etc etc. It takes you through the process step by step, and I found that it helped me understand the roots of my anxiety - the reasons why I might find certain things particularly challenging and anxiety provoking. It then gives you lots of strategies etc. I can’t recommend it enough - it got me out of the mindset of feeling so desperate and hopeless. It helped me to see that I didn’t need to think this way - and to realise that a lot of my thinking was a result of my history, my life experiences, and the messages I received as a child from my parents. Once you understand WHY you think the way you do you can start to challenge the validity of the thoughts you’re having. For example “I can’t cope” or “I’m not good enough” are often based on subtle messaging from others, or a life experience that made us feel we were weak or useless. The think is to CHALLENGE unhelpful thoughts. A lot of our thoughts are not true. Eg we might have a lot of self hatred because our parents didn’t give us much affirmation, or because we were bullied at school. Our history forms how we think - but when we understand that we can question whether or not our thoughts are actually valid or true. Often they’re not - and we become prisoners of our negative thinking. 
There are also practical things that I think really do help: getting enough sleep, eating healthily, exercise everyday, get outside into nature, only drink alcohol in moderation, try to have contact with people (this is hard for us autistic people often of course), and cut down on news and negative social media. 
I think the human brain is a bit like a sponge and you don’t want it absorbing too much bad news or negative stuff. I always was really interested in news and politics but at the moment I just avoid it because I realised it was depressing me. 
I would also recommend meditation. And google ‘Vagal Nerve Breathing’ - I’ve found that helpful recently. I also discovered some great YouTube Videos called ‘Therapy in a Nutshell’ by Rachel McCadam. (I think I’ve spelled her name wrong). 
Essentially there is so much you can do - the NHS is letting you down by not giving you the help you need - and it’s doing the same to me and countless others. But trust me you can do a LOT yourself to find your way out of this. You do have to work at it and do your research, and it does take time and you will have to be patient. But I feel it’s really worth the effort and time - i you will learn so much, and feel so much stronger for having learned all these things. It’s actually good to see it as a ‘project’ - because I think part of the good thing of this is that it gives you a purpose. It’s so easy when we feel overwhelmed to just panic and freeze. So taking these first small steps is really helpful in itself - because it stops us focusing just on the horrible panicky feeling and gets us to actually DO something. Something for ourselves. 
sorry this is so long! I promise you there is a way out of this feeling. I know it feels horrible and I’m so sorry you’re feeling this way. But don’t give up hope because it really WILL get better. You won’t always feel this way. Take care x 

Ann :) said:

if I do not manage to change something in how I deal with stress and address my huge pile of other issues, things will never work out in the long term. 

Very wise words - I think you are absolutely right - anyone with more than half their life already lived, needs to be mindful of your words.

Ann :) said:

Have huge feelings of failure and guilt, to the point where I am isolating myself from most contacts as I am too embarrassed to tell anyone what a failure I am... 

Now that was certainly my experience.  I refer to it as my "hiding under a rock" phase.  I would not advocate that it is a wise thing to do, but quite honestly, it was all I was capable of doing at the time and the thought of attempting more or contacting people was enough to send me over the edge....so I stayed under my rock!

Just thought I would chime in - to let you know that my life v e r y slowly did get better and I started afresh, albeit from a very VERY low ebb.

Survival from a mega-burnout is not assured, so care and time is essential.

Hi :) No need to apologise at all! I'm sorry you've been having a difficult time. I can understand how hard it is when practical reasons like work, financial reasons etc. stop you from taking the break that you need. For me personally there is also the guilt which is another barrier - I just don't feel like I am entitled to take a break and feel like such a failure if I do... but I think it's important to prioritise your health and wellbeing. Because in the long-term it probably just will not be sustainable- I've tried to push through for a long time (months if not years) and I did manage somehow but at huge cost and at this point I am not managing anymore at all. I have now accepted the sick leave my GP has given me- I have a lot of guilt about it but it was a huge relief- I needed someone else to tell me I needed to stop and take a break. Everyone can be sick or need a break at some point and hopefully your employer would understand that? Are you sure you couldn't take some leave?  I am actually also terrified of loosing my job but at this point it just can't be helped and I am trying to tell myself that my health is more important than anything else and if I do not manage to change something in how I deal with stress and address my huge pile of other issues, things will never work out in the long term. 

I think it is so important to put yourself first. It's very easy to always put work or other people's needs first, to say 'yes' as a default response and to just push through and through and through. But it will cost you . And I am starting to realise that maybe it is not worth it... I don't know. Have huge feelings of failure and guilt, to the point where I am isolating myself from most contacts as I am too embarrassed to tell anyone what a failure I am... 

In terms of diagnosis, I had a private diagnosis which was easily accepted by the NHS- It was via Sara Heath (who does a prediagnosic assessment) and then works together with a consultant psychiatrist who can then do an assessment (based on Sara's report) and give a diagnosis if appropriate. The advantage is that the psychiatrist also works for NHS and has done many autism diagnoses for the NHS so I had no problems at all having this accepted by my GP. In case this route could be useful to you, I can give you the link to Sara's website- She is autistic herself and very kind and also extremely experienced at autistic traits. 

I really hope you feel better soon and manage to get some rest!! 

Hi Caelus, I apologise for yesterday, I was way too emotional. 

The tingling sensation has been with me since June 2021 and I noticed it after I came out of a depressive episode. It started in my bottom lip and slowly worsened and spread over time. My eating has only been a week, and I think it's just where I'm trying to feel in control of something, when I feel I've lost control of everything. It's actually keeping me focused on controlling food and so far distracting me from another behaviour. 

Thank you for help and advice, and I again apologise if I offended you.

Hi Ann, 

Sorry about last night, I got too emotional and was just sobbing whilst sitting on my bed.

Unfortunately I'm not able to remove my stressors, and I think they are seeping into other things and causing stress there also. And for financial reasons I'm not able to break from work. I've got myself into a right mess.

I had a severe depressive episode that lasted 19 months, my worst by far. In that time I was told I was very likely autistic, and I had a private diagnosis, still waiting for NHS assessment. When the darkness finally lifted in June 2021 it was as though not all of me came back, or that I came back more damaged than before. I suppose I'm trying to make sense of what happened and if it was all real, and I'm unable to process it. 

I appreciate you reaching out to me yesterday, and I apologise if I seemed ungrateful. 

 i always get big urge to quit things and everytime I hold on in there it always pays off, there is always a challenge, always bad feel and hardness before you get good feels.

Much wisdom there, although one can end up sticking at things for too long, if you take it to heart to much.

Love that. I argue with myself too. I call myself names etc. I guess just as much as muggles dont get us, we have no idea what its like to be them too. Would be fun to be regular for a day. 

I usually surround myself with things i can talk to to make me look less crazy. Dogs, and fish at home. I have a tree (bonsai) at work called Bernie. I talk to him often. 

My colleagues are used to my odd side now, and find it funny. In public though i sometimes get told off for acting too crazy. 

I guess on the positive at least we will never feel alone, being able to have conversations with ourselves. The trouble is when we argue we cant storm off! They just come with. 

As you say, the muggles don't understand, and how could they, it's something that has to be experienced. 

I know what you mean about your brain. I am in a constant back and forth conversation with myself where I refer to myself as 'we'. And I talk as both sides of the conversation. I recently found out this wasn't 'normal. I can share jokes with myself, get into arguments. And though I can't imagine being any different, and I'd likely feel so alone without me, I do often wish it would stop, I can be a real jerk to myself a lot of the time.

It's surprising just how important it is to vent, and I thank you for listening to mine. Feel free to vent at me anytime. I truly mean that.

Ha ha yep. Exactly the same. 

My fears seem to always be lurking in the back of my brain and then suddenly pounce when im least expecting it. The night times are the worst. I cant get away from my own head when the lights go out. Its sometimes like my brain is my biggest enemy and is trying to kill me off. 

Then there are the times when everything seems fine. I can be having a lovely day, minding my own business and all of a sudden my head goes 'hold on. He is having an ok day. Oh no you dont sunshine. Lets put a stop to that Right now! Come on boys lets roll out the blackness. This idiot thinks he can have fun!'

I try to explain it to muggles and they never really understand. Even though they may really want to. It can feel proper lonely at times. 

Im sorry you deal with it too, as do many here. It is a little comforting though knowing we are all a little erm shall we say bonkers!!!!

Thank you so much Mrs Snooks. Bipolar as well as autism must be very challenging and draining. I'm glad you have ways to help, and waiting to get better must feel like it drags on. 

I still live and work as NT and haven't allowed myself permission otherwise. Part of me wonders that if I had an NHS diagnosis, I get my assessment this year, rather than the private one. But I'm sure I will over analyse that and find fault in it.

Well, I don't feel that I'm stuck in a loop - I'm very firmly in the "yes, I am" camp - not least because I keep having more and more positive reinforcement from left, right, up, down, present, past etc.  Unfortunately, I have lived my 50+ years doing a very good job of hiding the fact that I am fundamentally "other" to the majority.  Everyone that I encountered was very comfortable with me just being "weird" and "different"...but the minute you explain to people why that is, resistance abounds.  It is very frustrating and wholly invalidating - like people just want you to be the same as you always have been - but I want (and need) to be MUCH better and MUCH happier for my remaining 20+ (God willing) years of life.

Anyway, I mustn't hijack the airwaves with my moans and groans - but I am grateful to you today for giving me the excuse to vent today.  I've needed it !!

Bless you Pikl.

Thank you so much Dogtooth, that really means a lot to me.

A busy brain can me a nightmare at times. It's full of conversations I've had and may never have, chatting with myself, random trains of thought that I'm half exploring and anything else my brain can include. It gets so noisy that my ears hurt, just like I'm in a noisy environment. And anything I hear or read  appears as images, fun and also upsetting.

No wonder sleep feels like a myth. Is this the same for you.

Hi Number, there's something both comforting and sad when you know youre not alone in how you feel. And I'm sorry that you also feel the same. It's not to be believed. I could understand in a small way if I had researched and googled and come to my own conclusion, but that wasn't the case, it was spotted by a therapist who was addressing my depression. It was the first time I ever sought help.

Private diagnosis and waiting for NHS assessment, I'm stuck in a loop of yes I am, I might be, definitely not I'm just really messed up.

I had no idea that you go through so much, and I think you're amazing! 

I didn't believe that anyone could ever put up with me, and so to compensate them, I have done everything for them. My sister, who lives with us is the one who takes things off me, as I forget and struggle. 

I am a child pretending to be an adult and I don't want to play anymore, it's too hard. I just want to draw. 

I used to tell people that I had Peter Pan syndrome and can never grow up, it was the only thing I could think of to excuse my jumping, clapping and spinning on chairs at work. Now I can't do any of that and I had no idea it would impact me, as I didn't know why I did any of that.