My World Is Falling Apart

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.

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.

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. 

Good to hear you're doing well. 

Dear Pikl,

I'm so sorry to hear that you are feeling like that. I am coming out of a low in my bipolar and wanted to let you know that things can get better. I also wanted to let you know that all your posts have helped me so much while I've been on here. 

I have a list of things to do in my low which are similar to things I use for autistic burnout - I find that covering both elements helps get me well again.

I am struggling at work (been off sick) and home. It is very hard to keep going. And boring waiting for time to pass to feel better.

IM me if there's anything I can do to help.

xx Mrs Snooks

Pikl said:

Everything is still the same, except I've given up chocolate for the time being.

I have actually after two decades off sweet stuff started again in October last year ~ beginning with Lindor white chocolate balls with hard shell and soft centre, then the strawberry version of which which stopped being stocked in the new year which was somewhat disappointing ~ so back to the white ones, basically to compensate for stress and exhaustion induced low blood sugars and comforting my fragged states of mind and body after the stress induced seizures.

Pikl said:

I hate doing food shopping, and thankfully that has been taken over for me, like a lot of other things.

I loath leaving the house and doing shopping and stuff on account of the stress involved and the so not appealing factor of coming back around from stress induced seizures with crowds having gathered around me ~ which is another stress in itself that can lead to the further stress of ending up in hospitals; involving even more stress with hospital induced PTSD overloads and yet further more stress induced seizures.

I got stuck in a hospital for two weeks once as I lost my ID and the seizures were leaving me to fragged to communicate ~ fortunately I do not recall too much of that, although my great escape with days of getting whatever wherewithal I could muster to get to the nurses station to state, "I am discharging myself!" and then successfully got home was massively epic for me.

Basically I live a very much sedate state of existence involving a very much also fixed and limited activity schedule, with progressive increases and decreases to [in the clockwork sense] wind up for and wind down from engaging with all that is required of me. 

Pikl said:

Have mixed feelings about that.

That I fully appreciate and respect very much indeed ~ and I hope you do not mind me stating, but keep very much in mind that the depth and breadth of our sufferings involve us as being equals, not as being like as if slaves with lesser or greater value or worth, nor as if like in triage with lesser or grater needs ~ and neither as being above or below you in status ~ but right here beside you supporting us as we altogether support each other inclusively very much as  states:

Unknown said:

Pikl said:

I'm sorry for complaining,  everyone here has their struggles.

Thank you for complaining / venting - you make me feel a little less alone today.

You have written a very interesting and apt mish-mash of how I feel - especially right now !

Pikl said:

I've lost what little sense of self I had, and I don't know what to do anymore.

Tick - with bells on!

Pikl said:

I'm awkward, weird and maybe a little too direct, and I'm not allowed to explain why.

Tick, albeit I am allowed to explain why, but no one cares or believes me.

Pikl said:

I forget to do important things and if I'm focused on drawing then that makes it harder.

Tick, increasingly so.

Pikl said:

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

Tick.

Pikl said:

I'm sorry for complaining,  everyone here has their struggles.

Thank you for complaining / venting - you make me feel a little less alone today.

Thank you Luftmentsch. I've been in my current job for 5 years, 19 in a previous one, and I've never had to be so restrained behaviour wise. I'm waiting for an NHS assessment as nobody believes my private one, apparently I show empathy. So at work I'm awkward, weird and maybe a little too direct, and I'm not allowed to explain why. 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. I understand the other reasons why I have to keep it secret. 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. I've never understood who I am and now that I have a chance, it feels like I'm not permitted. This makes me feel like I'm even more wrong and broken than I had come to believe. I'm sorry I'm moaning and venting. I've lost what little sense of self I had, and I don't know what to do anymore. Again, I'm sorry for complaining,  everyone here has their struggles.

Hi, sorry to hear this. I don't have any advice, sadly, but please don't feel bad for posting here. This is definitely a safe space to voice these kind of thoughts. Most of us have experienced them at one time or another.

I agree with Ann about eating/nutrition. 

In terms of "failing," at work or at home, please be kind to yourself and remember you're autistic, and that makes these things much harder than for a neurotypical person. Please try to be kind to yourself, even if it's hard.

Everything is still the same, except I've given up chocolate for the time being.

I hate doing food shopping, and thankfully that has been taken over for me, like a lot of other things. Have mixed feelings about that.

Pikl said:

Hey Deepthought. So glad you're still here, and I hope you're doing ok.

Feeling somewhat sleep deprived as it goes but feeling all achy relaxed in a going nowhere fast kind of way today, so not too bad as it goes. I did my weeks big shop last night you see, always burns me out.

I really hope the overwhelming stuff eases off soon ~ are you still working with the autistic children and devoutly eating chocolate and faithfully drinking tea?

Thank you Ann, truly. I hope I didn't offend anyone, I never meant to. 

Hi- you are not being selfish at all! it sounds like you are going through a very difficult time. And you made me feel less alone for sure so by reaching out you are also helping others and we can all support each other! 

Thank you Ann, so much. I'm sorry you're going through a really bad time. Sorry, I'm in tears and feel really selfish for having posted. I really appreciate you taking the time to reply and for all your advice. I really hope things get better for you.

Hi! You should have posted for sure!!! I think what Caelus meant is that having a job and living in your own place is a big achievement you can be proud of! And it is not easy at all. I struggle with full time work too. And anyways everyone has different threshold and it is unhelpful to compare. It's ok to struggle. 

You're right, I do have a job, and just about have my own place, so I am very lucky there. I'm sorry,  I should've posted.

Hey Deepthought. So glad you're still here, and I hope you're doing ok.

Hi Pikl and Kittera, You are for sure not alone and it is great that you have joined this community. I was actually just considering starting a post of my own when I read your post, as I am actually also going through something similar at the moment. 

Are you still going to work? Do you think you could benefit from a break? It sounds like you are craving some time away from everything. You are really putting yourself down- I can relate to that- I feel like such a failure and think a lot of negative things about myself...  which I know is not helpful but it is very hard to stop. But I am telling you that you are not a failure. It's ok to struggle and to need a break and to need help. The world can be so confusing and overwhelming. I often marvel at how so many people just seem to cope with life when I seem to be unable to do so. 

So in terms of more practical steps to think about- are there any stresses in your life that you can remove so that you can have some space to feel less overwhelmed? For example can you take a time off from work? (I know that can be super hard- I have known for weeks and months now that I desperately need a break and that I am getting severely burnt out- it just got worse and worse and but I just felt too guilty to allow myself to stop. I finally talked to a GP again this Friday and was told to stay off work and rest- even then I still wasn't sure if I could let myself take that- I needed to be told to stop. This has happened to me before as well. I think I would have kept going to physically collapsing if someone hadn't stopped me at the time.) It's ok to need a break. Also are there any other commitments you can drop? You mention failing in the home? What do you mean by that? 

Are there any things you enjoy? or hobbies that you have? (if you have the energy for them at moment) If you could choose- what would you like to do at the moment? And if the answer is nothing at all and just rest and retreat- that's fine. We need that sometimes to recharge. But if there are any activities you enjoy, that might help. In the past exercise and outdoor activities really helped for me but I've been injured for 3 years now... - do you think you might enjoy a walk? Just be careful if you are not eating well. 

In terms of food, I don't even know where to start- I struggle a lot with eating and digestive issues and it gets worse when I am stressed and I get hyperstuck in routines... I am also have other compulsive behaviours... It's a vicious cycle too as lack of food will also further pull down your mood but if you are struggling, then eating is even more difficult. It probably would help to have some more nutrition. Can you make eating as easy as possible? Get some ready meals (can get healthy ones if you prefer that)? order a take-away? have some easy things you can grab. I am at the moment living solely of ready meals and convenience options (after spending over 6 months only eating 1 brand of whole grain rolls, eggs, carrots and apples...) - My dietitian is very supportive of me not cooking at moment- apparently it is totally possible to have a healthy diet without cooking and she feels that in my current state, I probably do not have mental or physical energy to deal with the myriad decisions and things cooking involves... 

It's awful that it takes so long to access help and therapy... and then it is often not really tailored to the needs of autistic people- I am also in desperate need of someone who can help me manage stress and anxiety... but so far the therapy I've had/tried has been useless at best and it is just very difficult to access (to be fair - I have moved countries quite a bit though so that hasn't helped)- I am sure there are good therapists out there, it's just a matter of being lucky enough to access a good one... But in the meantime, I would recommend reaching out on this forum to people- there is so much wisdom here. 

You are definitely not alone. We are all here to support each other. I hope you manage to find a way forward and please be kind to yourself!!