Sick of this cr*p no sleep, any encouragement would help.

[Liziam]

Hi,
so had crippling panic attacks last week 2 over 2 nights had no clue they were crippling panic attacks no idea, I’m in my late 40’s and I’m autistic have chronic anxiety and clinical depression, and didn’t know that’s what it was so ended up with my sister last week (as felt like I couldn’t cope) in A&E spent all night there till 4am still wasn’t told it was panic attacks as I’m also feeling depressed as I’d realised my antidepressant I’d been on for more than 10yrs had clearly stopped working a while ago and I had been in a terrible depression not realising it. I managed to get new antidepressants last Friday after literally battering down my GP’s door as they never see anyone or answer Econsult emails and it’s a nightmare to get any help there. They make me more sick.

cut to now and I feel better re depression but these panic attacks are now lower level but I’m constantly feeling it in my legs and obviously in my brain along with the diarrhoea etc I’m having so many symptoms of anxiety, and I just can’t fall asleep, now I’ve always been an insomniac and I’ve dealt with it it my way, I’ve managed to get some sleep. But this I’ve never had this, and I’m so sick of it, I know also my autism is hating my new better routine change and it can take 12 weeks for autism to accept a new routine, but it’s battling me hard by giving me these feelings. AUTISM SUCKS I have no gifts from it it’s horrible. There’s no funding for help really. I’m just sick of it all. Anyone out there to just encourage me.

[NoraB]

Hi,
so had crippling panic attacks last week 2 over 2 nights had no clue they were crippling panic attacks no idea,

Hi Liz, these sound like nocturnal panic attacks. I have had these for several years now, at my worst they were happening every night, but now I only get them a few times a month and I deal with them by doing my deep breathing exercises or getting up and moving about if I feel too wired. These panic attacks feel a lot worse than daytime ones because they're happening when we're asleep etc and there are fewer distractions, but they are harmless.

I’m in my late 40’s and I’m autistic have chronic anxiety and clinical depression,

Did you have a late autism diagnosis, Liz? (I was 47)

I'd say that MH issues like anxiety, depression, OCD, etc are par for the course of being autistic. It takes a lot of nervous, mental, emotional and physical energy to exist in a world that's not compatible with how our brains are wired. I certainly don't know of any autistic human being who doesn't have at least one MH disorder...

A&E spent all night there till 4am still wasn’t told it was panic attacks

I developed panic disorder after my mum died. I was used to the panic attacks as part of my 'norm but I developed nocturnal ones too. (I also ended up in A&E due to panic attacks and clinical depression took me down as far as you can go)

cut to now and I feel better re depression but these panic attacks are now lower level but I’m constantly feeling it in my legs and obviously in my brain along with the diarrhoea etc I’m having so many symptoms of anxiety, and I just can’t fall asleep, now I’ve always been an insomniac and I’ve dealt with it it my way, I’ve managed to get some sleep. But this I’ve never had this, and I’m so sick of it

When you say 'insomnia' what exactly is your sleep pattern?

Something else for you to consider, if you're experiencing a lot of physical symptoms (that's not normal for you) is fibromyalgia. This is really common with autistics because of how stressed we generally are. Many of us reach middle age, and there's a trigger such as a trauma, or an illness etc, and then we develop a condition like fibro or CFS. (Just something for you to consider)

Another thing for you to consider is perimenopause which brings with it numerous physical symptoms and an increase in MH issues like depression and anxiety.

I know also my autism is hating my new better routine change and it can take 12 weeks for autism to accept a new routine, but it’s battling me hard by giving me these feelings. AUTISM SUCKS I have no gifts from it it’s horrible. There’s no funding for help really. I’m just sick of it all. Anyone out there to just encourage me.

Your brain will take a few months to fully adapt to a new routine, yes.

I'm so sorry that you feel this way re autism. I do understand how you feel though. I was angry about so many things when I realised that I am autistic - even more so when I got the official DX. But many of those struggles were due to how people treated me, and that's nothing to do with autism and everything to do with their issues. It is undoubtedly incredibly difficult to be autistic, and non-autistics can't possibly fully understand this. I don't hate being autistic, and maybe that's because I have worked hard to make changes in my life so that things don't suck as much? I understand myself now. I don't try to hide who I am anymore. I stay away from people who have a problem with me being 'me'. I work with the anxiety and depression. The thoughts I get (which I've always had) no longer scare me. The gift that autism has given me is how I experience music, which appears to be on every level there is, not just sound. I thought that was how everybody experiences music, but it turns out the majority of people hear a song, whereas I experience it with all my senses. I'm also a nightmare (for other people) when it comes to music quizzes, or I was before I developed fibro and fibro fog.

The support for autistic adults (those without the major learning disabilities) is shit to be honest. But there is a lot of support out there from the autistic community. With the determination to help ourselves as much as we possibly can, we can improve our existence, but we also need to accept that there will be times when we would pretty much do anything to swap brains with an NT or have a lobotomy lol. That said, would that guarantee us happiness? Given that every person who ever bullied or abused me wasn't/isn't autistic (to my knowledge) I'd say that being NT doesn't guarantee a better or happier life.

Bottom line: we didn't ask to be autistic, but we are. So, it's up to us to try and make the best of our existence. Yes, it sucks BIG TIME to have to work this hard simply to exist, but we can create for ourselves moments which make us think, 'It isn't so bad to be me'. And every time I play music or look at my kids and grandchildren, I have that thought.

Get the MH issues under control, Liz, and then you can work on kicking @rse as an autistic human. While we obviously don't have a choice in the way our brains are wired, we do have the choice in our attitude. I say that my life is always a work in progress whether it's the MH, autism or whatever. I'm always learning and trying to understand myself, and others.

I honestly don't think we are the minority that people think. For every person who is formally diagnosed, there are several more who are self-diagnosed or don't even realise they are autistic. WE'RE EVERYWHERE!

[Liziam]

Hi,
Thank you for reply,
Yes I agree re nocturnal panic attacks, and I was diagnosed middle 30’s I’m 48 now I felt amazing when I was told I finally knew who I was and felt better since when I was 20 I thought I was going mad and ended up in a psychiatric hospital for 2 weeks, who still didn’t diagnose me but the routine helped me. I have had so many traumas biggest this year was my amazing mum me and sister had to put her in a home for dementia she was my rock, and I haven’t accepted it yet so yes think that caused it or the trigger. The night my unknown panic attacks started last week was me and sister arguing over phone and bam I got this horrific sensation which I now know is panic attacks got worse the next night so we ended up in A&E
yes I am Peri menopausal I had that checked so yep I have all that as well, not sure re the fibro thing and how my GP is I don’t know how’d I ever get anything checked it’s a nightmare they do it all by Econsult and sometimes don’t answer and drs want phone calls now the actual surgery is always empty. It has the worst rating where I live I’m looking into trying to change GP but only other one in my catchment area has as bad reviews re Econsult and not seeing drs etc.
oh my sleep pattern is horrendous truly bad got myself into a terrible one that autism now loves of course, I’ve never slept well even as a toddler and as a teenager I didn’t conk out for hours and hours, so I moved in on my own 6 years ago (should have got help re autism in moving independently) just didn’t realise, so moved in and have been hopeless with flat.
My pattern and I hate saying it as I can’t stand the judgement, but it’s not sleeping all night as i lack of melatonin which is what makes your brain realise you’re tired and you yawn turn over and sleep. So I’m in bed watching stuff to try and relax me on my iPad I refuse to have a tv etc then I’ll take melatonin at abiut 2am then Valium later and then sleep most of day. Yes horrible horrible routine I’ve gotten into hence why I’m desperately trying to change it now which the old autism hates me doing. Autism loves a routine even a very bad one. sorry I don’t know how to highlight passages you have said to put into a reply.

I do like the autism when I’m feeling better right now hate it due to how I’m punished for changing routines. I’m not with a partner, I’m a lesbian and I have just shut myself away for so long due to traumas with an alcoholic dad who died of drink when I was 25, stepdad died unexpectedly about 7 years ago, my amazing Nan died too, step dad I haven’t accepted. My mum going into a home for dementia this year has been hell. So now the panic most days now it seems and then at night I get it in my legs and in my head and because of my old routine I have to keep taking melatonin at that time and keep taking that Valium cos I can’t just stop Valium etc I don’t want to be on it, but brain chemistry I can’t just stop and autism likes the routine and I can’t just stop it, I have a friend who’s an expert in autism so she’s been very helpful, she studied in America and went to see Temple Grandin speak and has been a nurse in private and NHS hospitals for autistic people her whole life, she’s now a carer who worked with my mum and that’s how we found her and u became friends with her, she amazing at explaining why things are happening to me. But she has a life v sick mum, and her partner who is Ill and has kids so I can’t keep texting her. Hence why I’m here as I don’t have people except my sister and she works and has ADHD herself and gets exhausted very easily.

so sorry to ramble on Nora.

I know this will pass eventually but in the dark times I feel like it won’t.

[pulisa]

I'm so sorry that you are suffering so much, Liziam...and i do agree that the so-called "support" out there for autistic adults is laughable if you don't tick the right boxes in terms of "need". I have 2 autistic adult children in their 30s who both have complex MH needs. My son now has help with his employment difficulties but my daughter is "between services" so gets nowt other than me! Both would agree vigorously that autism is not a "gift".

I think that you are doing the right thing by trying a new antidepressant because dealing with autism and depression is incredibly tough and not straightforward by any means and accessing and being able to process any form of therapy becomes even more challenging. Have a look into Acceptance and Commitment Therapy (ACT) because this can be offered as an alternative to CBT if it's available in your area on the NHS?

[pulisa]

Of course your mum having to go into a home will be a massive trigger for your panic because this was not meant to happen and you have had your world turned upside down. She has always been your rock and now her role is not the same and you can't cope with that realisation?

[NoraB]

I have had so many traumas biggest this year was my amazing mum me and sister had to put her in a home for dementia she was my rock, and I haven’t accepted it yet so yes think that caused it or the trigger. The night my unknown panic attacks started last week was me and sister arguing over phone and bam I got this horrific sensation which I now know is panic attacks got worse the next night so we ended up in A&E

My nocturnal panic attacks developed when my mum died (suddenly). Your mum going into a home, and having that awful disease, will put you under an enormous amount of stress. I'd say that you could do with some kind of counselling for this, but it has to be the right therapist with you being autistic..

I am Peri menopausal

This, alone, will ramp up anxiety due to hormone imbalance. Throw this into a mix of autism, MH issues, your mum etc - and it's no wonder you're struggling, Liz.

I’m looking into trying to change GP but only other one in my catchment area has as bad reviews re Econsult and not seeing drs etc.

Literally can't get a face to face with ours anymore. I'm fully expecting my next smear test to be done via Ask My GP.

oh my sleep pattern is horrendous truly bad got myself into a terrible one that autism now loves of course,

I think this would affect anyone in the same way. (Lots of insomniacs on here)

I’ve never slept well even as a toddler and as a teenager I didn’t conk out for hours and hours, so I moved in on my own 6 years ago (should have got help re autism in moving independently) just didn’t realise, so moved in and have been hopeless with flat.

What do you mean by 'hopeless'? Do you mean paying your bills, cleaning etc?

My pattern and I hate saying it as I can’t stand the judgement, but it’s not sleeping all night as i lack of melatonin which is what makes your brain realise you’re tired and you yawn turn over and sleep. So I’m in bed watching stuff to try and relax me on my iPad I refuse to have a tv etc

To be honest, a TV would be less of a problem to the iPad which is directly in front of your face. These devices emit light which directly affects the brain making it hard to achieve sleep (especially restful sleep). I totally get the need for background noise or whatever. I go to sleep with the TV on, but I try very hard not to use my phone, Kindle etc before going to sleep. That's too much for my brain to handle. (On the occasions where i have gone past my 6pm curfew, I have nocturnal panic attacks, so make of that what you will)

I’ll take melatonin at abiut 2am then Valium later and then sleep most of day. Yes horrible horrible routine I’ve gotten into hence why I’m desperately trying to change it now which the old autism hates me doing. Autism loves a routine even a very bad one. sorry I don’t know how to highlight passages you have said to put into a reply.

I presume you don't work, Liz? This makes routine a lot harder. (I know this only too well)

Autism does love a routine, bad or good. You're absolutely correct. There is a hell of a lot going on with you right now. It's understandable that you feel the way you do. Worse, you are not being adequately supported and you must feel very alone. But you're not as alone as you think. I'm here (as are others) and we will help you as much as we can.

I do like the autism when I’m feeling better right now hate it due to how I’m punished for changing routines.

Don't think of it as your brain 'punishing' you (though I understand how this feels) try and think of it as your brain 'struggling to adapt'? (But it will get there eventually)

I’m not with a partner, I’m a lesbian and I have just shut myself away for so long due to traumas with an alcoholic dad who died of drink when I was 25, stepdad died unexpectedly about 7 years ago, my amazing Nan died too, step dad I haven’t accepted. My mum going into a home for dementia this year has been hell.

This is an enormous amount of trauma to go through. I'm so sorry this has happened to you, Liz. Can I give you a virtual awkward autie hug?

So now the panic most days now it seems and then at night I get it in my legs and in my head and because of my old routine I have to keep taking melatonin at that time and keep taking that Valium cos I can’t just stop Valium etc I don’t want to be on it, but brain chemistry I can’t just stop and autism likes the routine and I can’t just stop it,

Absolutely DON'T suddenly stop taking the Valium. Again, I'd say that this is possibly less about autism, and more about the addictive aspect of the medication you're taking, Liz. Try to make sure you are taking these drugs separately, and not at the same time as there can be possible interactions. You do need to be speaking to a doctor about your medication, but I understand your present difficulties with your surgery etc

I have a friend who’s an expert in autism so she’s been very helpful, she studied in America and went to see Temple Grandin speak and has been a nurse in private and NHS hospitals for autistic people her whole life, she’s now a carer who worked with my mum and that’s how we found her and u became friends with her, she amazing at explaining why things are happening to me. But she has a life v sick mum, and her partner who is Ill and has kids so I can’t keep texting her. Hence why I’m here as I don’t have people except my sister and she works and has ADHD herself and gets exhausted very easily.

Feel free to ramble on here. Or to me privately.

I know this will pass eventually but in the dark times I feel like it won’t.

I know how that feels. It all feels so hopeless, doesn't it? But nothing in this life is permanent. There is a natural ebb and flow to all life, including autistic life. You'll get through this. X

[Liziam]

Hello thank you for replying,
I understand your children and why they hate it, I do love it when I feel ok cos I see the world differently just when it’s fighting me tooth and nail to keep my old shitty routine while I’m trying to change it and add on the MH issues and being peri menopausal it’s a huge pot of bonker stuff in my head. Oh my mum not being here has hit me like a the earth hitting me I now don’t have this person to lean on who knew what to say and was such an amazing help and so clever. It’s all there in the pot. Any old friends of my mum who find out abiut her dementia are stunned as she got a degree v late in life then an M.A later on so me and sister just didn’t plan this at all we moved to KENT to be nearer to her when she retired, then this happens so unexpected and horrific and yes I have completely underestimated the impact.
my sister misses her so much we can’t even discuss it because it’s so distressing for us both.

I just want to know this will pass you know?? The attacks the depression then I can fully start to shift into changing things. But I can’t as well due to autism I MUST take teeny steps.

thank you for replying it helps so much just talking as I don’t have a support system with lots of friends I have my sister and I can’t keep leaning on her as she works and is exhausted and needs down time.

just want to see that light at the end of the tunnel.

[Liziam]

Yeah, seeing read out like that it’s in wonder I’m like this, and it was only last week I hit rock bottom completely, and I’m expecting to feel better after only 10 days, I’m very impatient. No I don’t work am on benefits wish I did work and I tried but it was hard just not the companies out there who help out with the autism side, was only a few part time jobs when I was in my 20’s, just couldn’t handle it.

I do take the melatonin at 2am and Valium at like 4am not much else I can do, I know it’s addictive I know I shouldn’t be on it, but that’s life at moment I have to deal with it.
I can’t keep thinking about how addictive it is, I’ll deal with that when I’m able too. Sorry about the bold text in that reply just now no idea how that happened but fuzzy headed of course.

oh my drs my god, when I did get to see a dr the day after the A&E night my sister called them up she spoke to a dr who just said ring 111 I mean what??? They can’t do anything and we had literally rung all the numbers and gone to A&E so we just went there and demanded to see a dr whi said no ring a helpline well my big sister lost her mind, as you can imagine. So I stood up out on the mask us autistic people have to put on and realised her screaming these v v v young receptionists wasn’t helping (wasn’t her fault) and I told her to stand outside she did, I took over and stated cry and saying what should I do slit my wrists right here in the surgery ???
Then a lovely nurse who heard the commotion came out and spoke to me and I told her it all how we’ve done it all rung every number imaginable been to A&E all said goto your drs, so the nurse brought me into a room and went directly to the dr and said what was going on and she finally after her last 2 patients at 5.10 saw me I told her that I needed new antidepressants as clearly mine had stopped working after 10 plus year which makes total sense and I even had to say what the psychiatric nurse at hospital suggested I take dr didn’t look any others up, the she said I will need a phone appt with yiu in 2 weeks ( no not face to face anymore don’t know who they are seeing as the place is empty and they say on phone all the time) so I went out and asked receptionist to make an appt in 2 weeks as dr told me too for a review of meds he said we can’t do 2 weeks ahead ???? Dr said yiu could, so was advised book an appt via Econsult ina week so we have and it’s booked for next week a 10 minute phone call on my sisters phone number I’ve no idea why but if we change it we will lose it. See how it’s making me more ill. Just pray she rings now, as I’ll need my old antidepressant taken off and new one added to repeat maybe upped from 20mgs I’m on I’ve no clue. There’s so many issues with that drs they stopped my Valium and took it off repeat just like that no telling me, my sister had to make HUGE complaints as it’s so dangerous. I’m also on Propranolol for palpitations that will be an issue with them at some point. Yeah I know shouldn’t be on them but again that’s for down the road when I’m not this sick with all this cos this is illness it’s mental illness people seem to not realise I think.


god it’s endless sorry for the ramble

[NoraB]

Both would agree vigorously that autism is not a "gift".

I need to make it clear here that I don't see autism as a gift. (That would be ridiculous given the amount of crap I've been through in my life, not to mention my daily struggles)

However, there are aspects to my autistic brain which I consider to be a 'plus', a positive, and yes, a gift. (The way my brain perceives music is that gift for me)

In the autistic community, there are those who hate who they are, and those who don't. We're a mixture of opinions and experiences, all as valid as each other.

P, you know how much I respect you; I love you to bits, and I think you're an amazing parent to your autistic children, but I don't apologise for the terminology I used - re gift in relation to the way my brain perceives music.

Music has kept me alive since I was 5 years old - it's that important.

To me, it's like the dude/dudess/they who designed me said, 'You're going to find life incredibly difficult, cocker. It's going to be megally shit truth be told. You're going to struggle to understand people or to be understood. You'll be bullied for being different and you won't have a scooby why all this shite is happening until you're in your 40s. But, to help you to cope with all this, you're going to be able to experience music in a different way to most people. You will feel music on every level, be able to mentally separate drum from bass and isolate vocals. Your memory with music will be 'machine-like' and that will really impress the crap out of people during pop quizzes (or really piss them off). Music will save your life on multiple occasions. It will motivate you to get through the front door and to walk down the street to school, to work - to anywhere. It will calm and stimulate you, there will be no indifference. You'll also have numerous crushes on male and female artists, and you'll still be wearing band t shirts when you're 52. You will feel totally disconnected from almost every other human until you go to a music concert and then you will discover a connection that only music can bring. Off you go, Nora!'

(Literally just ordered Debbie Harry and Foo Fighters shirts)

How can I consider this to be anything other than a gift or a positive thing?

I should also add (for balance) that I asked my autistic son if he would swap his brain if he could. His answer? 'No. I'm happy being me'. He grunted a bit at first, but I did interrupt him playing Cuphead. Maybe that will change? I don't know. He's only thirteen. He hasn't always been happy, but that unhappiness was due to the ignorance and prejudice of other people. He's happy with who he is now. (And many of us are)

I don't want people to only see the negative side of autism. I am always aware of who is reading what I write, and not just the names I can see at the bottom of the page. That's why I responded to what you said, P, not because I think you're wrong in any way (you're not) it's just that I don't want people to think that autism is a complete shitfest and tragedy. I'm autistic and I don't hate who I am. I don't consider autism as the reason for everything that's shit in my life, and there are positives to my existence as there are with many other autistics.

Anyway, I'm still wearing my dressing gown. Routine's gone tits up today. So, it's on with some motivational music and it's going to beeeeee AC/DC!

[Liziam]

Oh please don’t mistake me, I wouldn’t change it but right now in this seemingly endless hell I would to stop this becos of the adrenaline and constant anxiety right now.
I wasn’t bullied at school even though I was different my mum and sister have adored me no matter what I was and my nan, and yes many times I see things very differently and it’s wonderful and I know it’s who I am.
just it makes life when you’re this low a bit harder to get back up like we have an extra rung on the ladder we have to climb to get there. If that makes sense.

im so pleased music does that to you because of autism that’s amazing.