Published on 12, July, 2020
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!?
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......!
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