Waking up - HELLO WORLD GO AWAY - I'm not ready

Hello if you're reading!

I think this is my first post. 

I do have a formal diagnosis of high functioning autism via the DISCO assessment method. This was a gruelling process, for those of you who have also done it know, but it also means there is absolutely no doubt in my diagnosis; which is the main thing for me. If there could be doubt, I'd have wriggled free of diagnosis, I am quite sure. 

I've had a look through recent discussion and can't find anything on what it's actually like to wake up and come to the world each morning. 

I'm wondering if anyone else finds it as insulting to the senses as I do, and always have done - though some days are markedly worse than others, when waking up. 

Here's what happens for me: waking up the first sense online is my hearing. I hear what I can only describe as falling glitter (yeah bare with me). Let's imagine an amazing mic next to a pot of glitter being tipped out. Can you imagine that sound? Like tiny light soft sand. There's other sounds too. Sometimes a high pitched constant sound, sometimes lower tone, sometimes just a noise I don't really know what it is, but often more than one of them. This has me going like *eehhh* and my response is to want to cover my ears up.

By this time I've probably attempted to open my eyes and I've become aware of the tightness and tiredness in my body.

My eyes are sensitive to light, I've been wearing tinted lenses since I was 10-12  (deep purple tint) and got them again when I was 22 (dark pink this time) so these have been a thing much longer than my diagnosis of autism, which was merely a month ago as a 23yo. I can't look at any sort of screen without bad effects. Waking up in the morning just any light of any sort is not OK. I have attempted to train my eyes by keeping curtains open so my eyes adjust under the eyelids before I'm conscious, but this is to no avail. I would wake up with the first light!!.

I have some chronic pain for multitude of reasons: hypermobility, scoliosis, degenerative disk disease, but mostly from my obsessions with various hobbies as a child, I really out did myself. So every day I have pain, this leads to someone touching me feeling like pain.

By this point - approximately 1 minute into consciousness, I am feeling very frustrated and I'm grasping at the tails of my dreams, clamouring to be amongst them once again. I remind myself that in X number of hours I will be free again. I think of what I must do for the day. I get up, stretch, and try get on with things.

My partner has always had little understanding of this, as a result he will still to this day, try and interrupt me whilst in this waking state, which does not go well for anybody. I do not feel, for the first hour of being awake, capable of being 'human', of being in control or thinking straight. I struggle to get washed and dressed (not going to lie I will frequently skip these steps). I hate the water. I hate the change in clothes. I hate the cold. I hate moving! I feel sick too. I usually don't have much strength at all and can have to lay down stretching for up to 20 mins before I'm ready to stand and walk down stairs (grab the bannister with my hand with enough grub and that) 

I feel unbalanced, dizzy, and finally, anxiety sets in. Anxiety is not what it used to be, but some days, it's gobbled me up before I'm out of bed even. Apparently this can be lack of emotional regulation but I'm yet to talk more with the psychologist. 

Never have I ever been able to 'do' breakfast. Just, is that a joke?? I can eat after a few hours though. Just not a chance in the morning, I would literally be sick. 

All of these things will be worse if I am tired and I cannot actually function when I am tired, like I am not myself. 

I'm really hoping someone is going to reply 'omg me too', but more than that, I hope someone is going to reply, 'omg me too, but that was years ago this is my routine now...'!

I hope that nobody comments on the less than helpful partner. I

That's a big topic of problems that I'm not really sure what to do about and will avoid at all costs! :D

So... Anyone else?

I've tried ear defenders and I can fall asleep listening to music so long as I have heard it before. This is even the case when I take medications to sleep or help with pain, in fact, it is actually much worse!

Anyway all of this happening on a daily basis, is stressful. I've never been able to talk about it so I'm excited to post about it. I do sorta hope it's relatable, even though it would suck if others experience this.........

I feel it must be to do with sensory processing but, I'll start with finding anyone alike!? 

  • Sometimes, people who appear to be "unthinking", are not "people" at all.
    It sounds like you're going through a lot with university accommodations, and you're definitely not alone in this.

    You were correct - if you look at the latest (bar mine) post on the Creative thread, this bot has popped up again.

    (Now deleted, presumably by a mod).

  • I'm not sure that is a truism.

    Sometimes, people who appear to be "unthinking", are not "people" at all.

  • It's a site glitch. It throws up old threads, and people without thinking, comment on them.

  • Due to my "special interest".....that some here will know about.......I am "interested" in the fact that this thread has been resurrected 5 years after it's last recent "input."

  • I wish the world was a single person, so i could go all Jason Vorhees on it

  • It sounds like you're going through a lot with university accommodations, and you're definitely not alone in this.

  • I can relate to this, oh can I.

  • I can relate to lot of what you have said. I find mornings extremely difficult I am just not a full human for the first couple hours.

    I just wanted to focus on your first comment though about hearing 'falling glitter'. I have always heard this since I was a child and the strange ringing sounds. I had many tests as a child for tinnitus etc always came back negative. It is like I can hear all the electrical signals in my brain passing between neurons. I can hear it when ever is is quiet. I even focus on it for meditation and it is very effective for that. Sorry I do not have a fix for it I just live with it but it is reassuring to hear someone else hears it too.

  • Oh, yes; to say that I'm "not a morning person" would be a huge understatement. It's as if each part of my brain has to go through its own waking up routine, one at a time and ever so slowly. It's at least an hour or so after waking up before I feel ready to deal with speaking to people, and even just a cup of tea can feel like too much breakfast. All of my sensory sensitivities seem turned up to the max; I find using and understanding language difficult; I forget what I'm doing after only a few seconds - I can be as close to my brain shutting down as if I'd been exposed to an overwhelming environment for an hour or more during properly "awake" times.

    Like @Lea0311, I also wonder about your general quality of sleep and sleep patterns. Like a couple of other family members, I have chronic delayed-onset insomnia, and have had ever since early childhood (getting me ready for school was a nightmare for my Mum, because both of us were only barely awake!) In essence, my body wants to sleep between about 4 am to 12 noon; the pressures of a "normal" daily life mean forcing it to be 4-5 hours earlier, but my body and brain just never seem to adapt to this. It isn't only my sleep phase that's delayed in time, it seems to affect all of my body's daily cycles - I get hungry at different times to everyone else, can feel really mentally sharp in the early hours of the morning, always feel too hot and restless if I go to bed earlier, and so on. This kind of insomnia does seem to be especially prevalent for autistic people.

  • sun glasses of various types i carry them all the time .... i have above average hearing so i carry ear defenders everywhere. Enjoy your spell in quietness.  oh my sunglasses wrap over my normal glasses. 

    Outdoor HD Night Vision Care Eyes Protect Wrap Around Driving Sunglasses Glasses(Yellow)

    Outdoor HD Night Vision Care Eyes Protect Wrap Around Driving Sunglasses Glasses(Black)

  • Hi HP,

    I can relate to what you're saying ... when I haven't slept well I'm already weary of starting the day even though I've just woken up and I have trouble processing sensory information. Have you had a sleep study or something similar? Maybe your body isn't resting properly when you're asleep which could lead to sleep deprivation. Another thing that really helps me with waking up in the morning is exercise. Not only does it help me fall asleep but it makes it easier to wake up in the morning with more energy.

  • Thank you scottiechristine. What comes across is that you have done a tremendous job of helping yourself find small fixes over the years. I will preserve also. 

    I absolutely relate to being hungry mid morning with a slight chuckle: my lunch would be gone before lunchtime. Later in the day me doesn't like mid morning me at those times. Ha ha.

    I do feel to a certain point that catering to my sensitivities makes it all the worse when I'm in environments that are not so subtle, making me less likely to cope or fulfil what I was to do. Like supermarket lights. Street lamps. Really catch me out. Hard. Striving towards a life that has neither of those things 

  • I do that too (using the living room to light the kitchen). In terms of your dark living room, you've cracked it for you - the housing officer isn't the one who has to live there Slight smile

  • Yes, I have lamps and very, very rarely use the big lights - in fact I don't put the kitchen big light on at all unless I'm doing something that really needs it - I tend to use the light coming through from the living room. 

    Even at night, if I can get away with doing something without putting *any* light on I will!

    I once had a housing officer comment on how dark the living room was in the middle of the day - I thought 'great' I've just about cracked it, and only then realised he was probably making a negative comment LOL

  • I really struggle to get up in the morning, but I think that's mostly anxiety-related (e.g. not sure what the day has in store, worrying about the commute etc.). One thing I definitely struggle with is light - my preference is either to get dressed in the dark, or with a small lamp switched on. I can't stand the big light at the best of times, but definitely not first thing in the morning! I start seeing spots in front of my eyes because it seems so bright.

  • Oh boy, yes, much of this is relatable - even the Scoliosis. I'm Aspie and now comfortable with it.

    Noise has always been an issue for me, especially noisy neighbours (I've lived a long time in housing association property with their minimum sound insulation) and have a few 'solutions' that work fairly well - the first, I think you're already seeing, is a 'white-noise' approach - I either leave a radio on low, or earplugs, or, more recently, I added a dehumidifier to the the bedroom (I'm in an end bungalow with the bedrooms adjoining) and I've found that it purrring away thru the night blocks out the banging about next door (it's a one bedroom bungalow just how many doors can one person bang in a morning!).
    If there's noise during the day I put on my tv/radio/dvd, etc to a level that pretty much drowns out the noise and centre my attention in my own home.

    As regards light I have exactly the same problem - way too sensitive eyes - I bought some of the stuff you can cover windows with - like a black plastic film that cuts out a huge element of strong sunlight, plus I always aim to have a bedroom window facing west - gets the warmth of a setting sun but not the bright wake-up at silly o'clock light. It's taken several moves to get the house and arrangement that suits me best.
    The plastic film is fiddly to fit but works wonders in my south/west living room that 'cooked' the summer before.
    It also stops heat being an issue in a morning - that's something else with housing association lack of insulation - it gets too warm in summer - fans on timers also help.

    Yes, I also don't 'do' breakfast - never had - when younger and at school/work I'd have the problem of then getting hungry mid-morning but not having access to a meal. Fitting in with social conventions meant having to eat something at home first thing which meant feeling sick, along with the feeling of being ill because I was being forced to go into a situation that continually made me feel ill as well - ah, sooo much has improved since I quit the 9-5 routine (I now work online at home - silly hours but the peace of mind it brings is worth it).

    I find the struggle to wake and get out of bed on a morning is exacerbated if I don't have plans for the day - if I think, the night before, of what I want to achieve the next day, even if I don't cross off all the tasks, it's still enough to say 'right, I want to make a start on xyz', plus I find having a cup of tea and a chill on the sofa first thing is a nice way to ease into the day. I'm a big believer these days in being kind to yourself - we fall asleep gradually (usually) to why expect ourselves to 'spring' into action when we wake? Do that gradually as well, and savour the start of the day.

    I think the best approach to dealing with issues is to do what you just did - get it 'out there' and get some ideas from the rest of us as to what sometimes works and how it may work for you with some tweaks, etc - there's no 'one-size-fits-all' but there are some basic ideas that help, but I think the main 'help' comes from looking at problems logically and getting active in finding a 'fix', as near as you can. It's taken me a while to recognise issues and work out how to best fix or work around them - from before the days of Asperger's being widely known about and the days before the internet and sharing with others with similar issues. If I'd known then what I know now......!

  • Hi Adie, 

    Thanks so much for your response. 

    I wonder what your coping strategy is for the light? And if people understand if you explain? For example, I wear a hat 98% of the time outside, and inside! This is an odd thing, often seen as rude, and I don't ever know when might be a good time to explain. Or then, even if I should bother explaining. Either way I'm sure it makes me seem rude! The hat is to exclude the light coming in from over the top of my glasses. I cut myself a fringe in school to act in the same way - this was not a good look, looking back. Hah.

    I do not have any problems with my ears, and my hearing has always been this way. I was tested when very young child because I was ignoring people, but my hearing is fine, and it is not tinnitus as I posed the same question to the GP some years ago. I just have very acute hearing. There are times when I have been camping and I have experienced quietness. There is a place I go to on a Wednesday which also offers this quietness.. In comparison to normal the noise is minimal, almost nothing and it's like my ears are clean?? I have been trying to blame the household appliances for some time, but it doesn't adequately explain, argh! Ha ha. 

    Wanting to be in dreamland... Life with eyes shut is massively underrated by most ha ha. I have had long stints in time where for weeks I did not want to be awake and spent 15-20 hours a day asleep. I don't see it as a waste though I find it very comforting and indeed the only true safe place. I also feel that I can get information in this way too. But this is a problem when wanting to do normal life Ness. I know I have a a period of time coming up like that, it is calling to me. I know I will have those days inside soon! I am excited. Not sad for this. 

    No current meds Adie. I like it that way too! Blush

  • you sound really bad --- no i'm not OMG me too -- i do recognise some similarities below.

    you have severe tinnitus am i correct ? have u heard of "menieres disease"   its just that u are mentioning what i think are inner ear problems plus  alot of anxiety. 

    Are you on any medication ?

    similarities

    similar sensitive to light

    degenerative back issues 

    inner ear issues which have stabilized but made me really ill at one point. (my dad had "menieres disease" which made him bedridden for periods)

    dont do breakfast

    wanting to be in dreamland but no way as severe as u.

    wish u feel better in a while