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!? 

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  • 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 

  • 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

Reply
  • 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

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