It’s been a mixed couple of days. I haven’t been able to achieve as much as I’d have liked to, but it’s a slow process, and I understand that – it’s just sometimes hard to feel motivated enough to fight the fight. A good friend of mine took me for a cinema day over the weekend, we saw Rogue One and Split. Split is a film I’ve been eagerly waiting for, for some months now, and I wasn’t disappointed. Though there was a confusing twist at the end, and now I need to consider watching another film, but even so, it was good. Some incredible acting from James McAvoy! I tend to enjoy most films in general, but some of my favourites usually end up focussing around mental illness or disorder – this one being Dissociative Identity Order (Multiple Personality Disorder).
So anyway, that was a good day, but very tiring. I’m still not very well, so being out overwhelms me faster than it normally does and I get super tired, super quickly. Whilst I was out I popped into Hobbycraft because I’ve really been feeling like getting back into drawing – and I have been gradually purchasing some new pencils and markers etc, but in Hobbycraft I found some Copic markers! I was super happy cause I’ve never seen them in a store in the UK haha, so I grabbed a wide ish variety of colours, with a couple of projects in mind and merrily went on my way. When I got home that evening I made a quick sketch of Pikachu, which, to say I haven’t really drawn in a good year or two, wasn’t half bad.
Today has been much more of a fail though, as I was supposed to be going into town to the post office and to pick up some more drinks which I’ve found, that I’m really enjoying at the moment. After debating with myself all morning whether I felt well enough to get up and go out, I had to give my parcels to my Mum and tell her which drink it was so she could bring some back. As a result, I ended up asleep almost all of the day; but like, really, really asleep. Couldn’t have woken up properly if I’d tried. It was really bizarre, and I really don’t like days where I feel like this because it’s such an immediate waste.
To try and feel a little better with today I made another sketch with my awesome markers. I was going to leave it but then when I was looking at my fish I realised that my biggest one, Finneon (Derpy is his nickname because he swims upside down a lot), doesn’t look very well. He’s a lot less active than he normally is and there’s a couple of marks on him that aren’t part of his usual markings. Anyway, it kind of got me worried and I was a bit upset at the thought of potentially losing him, so I decided to draw a picture of him. I’ve not had him a year yet – my other two, Magikarp II and Goldeen have just had their 1st birthdays, but I got Finneon much later.
Moo Moo, my kitten, was really cuddly today, which was nice cause I was feeling pretty awful all day. My friend recently bought me a fidget toy – a spinner thing – and Moo is fascinated by it so he was just laid on bed with me watching it spin. My hamster, Marshmallow, is also doing well – he’s had a new cage for a couple of weeks now and he’s settled in nicely. He’s so cute, and so organised; he takes food from his bowls or from the hanging snack bars and puts it all in a neat pile at the bottom of his cage. But he’s also an anxious ball of fat, bless him, and he cries sometimes when he’s unsettled. He’s adorable. I love my pets a lot, they cheer me up when I’m having bad days. My Mum will bring Moo upstairs to see me if I’m stuck in bed. <3
Today was a particularly dull day. I think the weather was dull – I’m not entirely sure because by the time I paid it any attention it was already dark. But my mind was dull. This was one of my cloudy days – I have a lot of those lately. So this stupid sinus infection thingy that I’m currently stuck with is really starting to get to me now. I can’t breathe properly and I can’t eat properly. I’ve mostly been eating noodles, or other thin, squashy foods. And don’t get me wrong, I love noodles. All about the noodles. But when it’s not by choice and my only other option is soup…yeah, it’s a bit dull.
My kitten was being extra cuddly today, which was nice, cause I really needed the cuddles. He’s so damn cute. All of the love. I tried to organise my room a little today, because I’ve just had boxes of things laying around for days now and it makes my head feel messy. So I managed to make it a bit less cluttered, so I’m at least pleased with that. But the rest of today was kinda pointless as I ended up sleeping for almost all of it due to various aches and pains and complete exhaustion.
On a more positive, but not entirely useful, note – my Pokemon card collection is coming along nicely. It’s something I’ve been focussing on whilst I’ve not being doing so well, and it’s something I can do without much effort that I really enjoy. I’ve been both buying and selling, and as tedious as it may seem, I find it fun. I won’t bore you with the details of my collection, don’t panic!
So on reflection, today was a bit of a waste, but I’m not going to get annoyed about it, because that’s not going to magically make it not a waste, and it will just upset me further. Instead I’m going to focus on the fact that I managed to eat food despite being ill, decluttered my room a little, listed some Pokemon cards for sale and sorted a few of my own cards out and I managed to have a bath and wash my hair. Simple things, but things that I struggle with when I’m not doing so well. So eating and bathing are actually really big achievements, as lame as that sounds.
Okay so here’s a novel idea…I’m thinking about getting into blogging again. Possibly daily, I dunno yet. Reason being – well, there’re two reasons – my psychiatrist wanted me to start keeping a diary, and also, I’ve been really struggling lately and I purchased a laptop to try and help me still be productive even on my bad days when I can’t get out of bed. So, let me start by quickly running through a few things to bring you up to speed.
When I say struggling, I mean that being a human has become really difficult lately, for a number of reasons. Firstly, I’ve been on medication for depression for over a year now, and a few months ago it was increased to the maximum dose – it’s still not really working, per se. Also, after an initial assessment from a psychiatric nurse (that I see almost every other week), and my psychiatrist agrees, I’ve found out that I probably have post traumatic stress disorder, in part as a result of a mentally abusive relationship that I was in for several years, but mostly as a result of mental abuse from my real Dad – from the day I was born really, until recently when I stopped all contact with him. There have been a few other issues along the way, and really it’s all just gotten on top of me and I’ve been finding it increasingly difficult to sift through all the crap and just get on with positive things.
I’ve actually felt a lot better since I got this laptop, which sound stupid, but it means that I’m not totally disconnected anymore. There are so many days that I spend almost entirely in bed feeling absolutely hopeless and incapable of doing things. I really want to get up and go on my PC, every day, and yet most days pass by and I still haven’t turned it on. So having a laptop means that I can eliminate feeling upset and annoyed about that, cause I can just grab the laptop and work on whatever I want. I’ve got Photoshop, so I can edit my photos and work on my web design, I’ve got Premiere and Audition so I can edit videos and record stuff, I’ve got Word so I can write my book. Then if I’m not feeling quite so productive I’ve got Netflix and Amazon Prime Video, as well as various games (I bought a kickass laptop haha, it can handle whatever I throw at it).
So anyway, I wanna just kind of write down my thoughts and feelings here and just…get stuff off my chest and if it helps people along the way then that’s super.
Today I woke up with what is probably a sinus infection, and it’s affected my jaw so I can’t open it properly, so eating is really difficult. I’m not even surprised when I wake up ill anymore. It happens so often nowadays, I just think…meh, whatever, course I’m ill. I ended up spending most of today asleep, which I really don’t like – but I’ve been making a conscious effort not to feel so annoyed with myself when I don’t manage to do something, because it won’t help, it just makes me feel even worse. I did get up in the evening and spend some time with my parents and my kitten. We watched TV for a while. I also managed to clean out my hamster’s cage, Marshmallow, so now he’s all happy again. I’d been needing to do it for a few days and I felt really bad for leaving it. So I’m pleased that’s done. I’ve come to bed feeling really ill again, and I plan to sit on my laptop for a while, maybe do some work on my book and then watch A Series of Unfortunate Events on Netflix.
Honestly, I've been falling apart in slow motion for about 2 years. And I think you know that!
Part of falling apart has included wanting to be more private about my life, for a change. I shared a heck of a lot with you guys over the past 6 years, and I just got to a point where I didn't want all of that to be out there anymore. So, whilst I will bring back some of the videos, a huge, huge portion of them will remain private, and I hope you can respect that. I in turn, will respect that some of them have been and continue to be very helpful for our community and will endeavour to either keep those ones public, put them back up, or remake them.
Anyway, for those who don't know, I left Chris a few weeks ago and I now live with my Mum again. I was deeply unhappy, and really, it's only now that I realise just how bad I felt. But I'm not going into it more than that.
I will try and keep my sites running, but they didn't tend to have a habit of making enough money to support themselves, and I don't have an income, so it might turn out to be a struggle.
I have a bunch of things I was working on, one off things like keyrings and necklaces etc., which you might not be bothered about, but I enjoyed making them and so I will list them for sale soon. Now I'm all set up here, I can try and focus on this again. I'm not promising anything spectacular because I really do need to have some time for myself and to figure out who I am now. And I honestly don't know if that can include being so dedicated to the Autism community, because I'm just so drained from it all. But at the very least, I want to make this into something that I'm happy to leave it at if I was to stop. Because currently, it's a bit of a mess.
I have branched out, socially, lately and have more 'normal' interests and hobbies and stuff, and it's nice. I'm really enjoying it. But I don't want this world to collide with my actual life, I can't explain why but it's just not a conversation I want to have, because for the first time ever, it's not painfully obvious that I have Asperger's and I love not having to explain why I'm weird!
Hmm. I a while ago I was looking through a gift catalogue for Christmas gift ideas (okay, so several months ago!) and I got to the toddler section and was browsing through the toys, when it suddenly occurred to me; isn’t is stupid to give our children fake versions of things which are dangerous to them in real life at their age?
I’m talking about toy kettles, irons, cookers etc. We can buy them exact replicas of our own grown up ones, should we want to, but if not exact replicas, they all look like what they’re supposed to. Surely when you give a 3+ year old (the recommended age for this very convincing toy kettle I’m looking at) we’re opening ourselves up to a potential disaster? If they think it’s an okay thing to play with what if they get hold of the real thing? Why would they know that’s it’s wrong? And, even if we tell them over and over, won’t they just be confused about why they can’t touch Mummy/Daddy’s kettle, but theirs is fine?
Even more dangerous, surely, is a toy cooker…
Ugh, I don’t know. It just seems silly to me. Although, I had these things as a child and I very rarely had a run in with the real thing. However, I did touch the hob of our oven when I was 3 or 4 and I burnt my finger – it got a little white bubble on it and it hurt a lot! I hid it from my parents because I thought I’d be in trouble.
Not sure if it was just an accident or something to do with the fact that my toy cooker was okay to touch and that hadn’t burned me, so why would big one?
Just something that I was thinking about…so I thought I’d blog about it instead – it’s more productive. J
After messing around selling things on eBay as if my life depended on it, I thought I’d sit down and finally sort out my children’s book which has been almost finished for several weeks now. I polished it all off and am super happy with the results! I have released it as a PDF for now, and then it will get released as a paperback when I am able to purchase the block of 10 ISBN numbers.
It’s my first children’s book, and I hope it will be helpful to children on the Autistic Spectrum. I wanted to use Koby and Friends because they are bright and cute, and hopefully, engaging for children. I gave them personalities from the start, which means that they will be very relatable for disabled children; for example, Koby is closest to a child with Aspergers Syndrome, and in the first book he is struggling to understand why his brother and sister are allowed to play with ‘his’ toy. By the end of the book, he has come to realise that they can all play with it together and this means no one is left feeling upset. When he wanted to play with it, his brother, Chuckles, was upset, when Chuckles and their sister, Sparky, were playing with it, Koby was upset – but when they all play together, they all get a turn and are all happy.
I think that it would have been useful to my brother, who is on the spectrum, as a young child, as he didn’t understand that it was the kind thing to do to share. He just got super stroppy and expected to be able to play with whatever, whenever he wanted! I know that a story book isn’t going to be the answer to everything, but hopefully it will be a nice place to start.
I didn’t want to set an age for the reader, but I think that it could suit a wide variety of age and child – young toddlers could look through the pictures and still grasp what is happened, whilst their parents could explain what is going on, through to an older child being able to read it themselves.
I’d like to think that the Koby and Friends characters could be a silent nod for supporting raising awareness of Autism Spectrum Disorders, without plastering ourselves and our children with the ribbon, which other kids might understand and possibly bully them for – whereas, Koby and Friends are just characters like from any other children’s book.
I know I only posted about makeup the other day - but I forgot to mention how much I like to do really creative makeup - like, for Halloween usually. Anyway, today I tried the 'pop art' style of makeup for the first time, and here are my results:
I started doing videos on YouTube, primarily, because I had a petition going to raise awareness of ‘hidden’ disabilities, but as it was a school holiday at the time, boredom took over and I started a regular video blog. The rest, as they say is…nah that’s too cheesy.
Anyway, I say ‘hidden’ disabilities because all the things I have aren’t exactly obvious, and thereby people seem to brush them to one side and think I should manage to cope just like everybody else. But that isn’t always the case. I have managed to cope with some things, but a lot of the time I do struggle with these invisible symptoms and I only wish that more people were aware of certain disabilities so that I could be more easily accepted and understood. This is true, more than ever, within a school environment (and I’d hazard a guess that it’s similar in a work environment as well).
The first time I went through school, I was undiagnosed and I metaphorically fell flat on my face. No one understood me, hell; I didn’t understand me so I don’t know why I expected anyone else to. I was just starting to realize that I seemed to be standing still, personality wise, whilst everyone else grew hormones – and interest in the opposite sex. I was in love with education, and everyone else’s behavior got in the way of that when they continually disrupted lesson time. So for the first time, I was looking around me and seeing the extent of the problem. I had no friends (as they grew so different from me, I stood frozen in time and they all drifted away from me to find someone more up to date). Because of my social problems and apparent depression, the school sent me for therapy – which didn’t help me. And as things went from bad to worse when the bullying kicked it, I eventually ended up on a part time schedule for school. Missing out on lessons and stuck in therapy. That’s what my school did for an undiagnosed Aspie. I ended up leaving, and tried out another secondary school – which also failed.
In the time when I wasn’t in school I did manage to get diagnosed with Aspergers Syndrome, Dyspraxia, Attention Deficit Disorder and Schotopic Sensitivity – oh and…Dyscalculia. So just the odd thing then… The main one for me is always going to be Asperger’s though.
When I eventually went back to school to do my GCSE’s, I was with a year group 2 years younger than me – and it turns out I had more in common with them. I made friends and they were all understanding of my issues. I made the decision to tell everyone, so that they would understand if I was having a bad day. Everyone was surprisingly kind to me. Anyway, being loaded with information about my various disabilities seemed to help the school and they majoratively understood; until they got a new head teacher. But that’s a story for another day.
People have often said to me that a lot of people struggle socially and that I should just learn to cope, like everyone has to. I think that I must hide my Asperger’s well, because people just don’t seem to understand the severity of having AS, especially in certain situations or whilst in certain frames of mind.
My point is, unless you have all the information under the sun to support your diagnosis’ then it can be hard to make people understand; whereas, with more outwardly obvious disabilities, people seem to be much more understanding. So, I just wanted to raise awareness - of Asperger’s in particular.
When I used to be in school, I loved the structure of it. It gave me a really solid routine and it helped a lot to sort myself out. Previous to this I’d been at home and I’d been in a really bad place – trying to recover from what I was told was a nervous breakdown. But, when school holidays came around I sort of fell apart. The only other routine I’d had recently was when I was recovering, so I was just in bed a lot, really depressed and scared to go out etc – not knowing what was wrong with me, so I just started to slip back into not doing anything. The longer the school holiday, the worse it got, and the harder it was to go back to school again. I often had the first day back off school because I’d panicked and didn’t make it all the way there, or sometimes, not even out of the front door.
So, as you can imagine, the summer holiday was a nightmare for me. Especially as my only proper friend went to his family’s ‘second home’ type thing, for pretty much the entire summer. I started finding it difficult to sleep properly, especially at night when I was supposed to be asleep.
I tried to fall into a ‘home’ routine, and went to town with my Mum – which wasn’t always helpful as I panicked when I saw people from school. I don’t like seeing people whom I only see in one place, somewhere else as I don’t know how to talk to them about anything else other than about things to do with where I normally see them. Example; I could talk to people from school, about school, at school. Line drawn, can’t speak to them anywhere else about normal things.
Anyway, the summer when I was trying desperately to get a specific diagnosis, I’d been at school, two years behind, doing my GCSE’s for one year and it had gone pretty well. Aside from the uniform; I didn’t like the jumper, which was fine when I first went because it wasn’t cold enough, but then in winter they said I could wear a plain black one (rather than the burgundy, logo one). I also didn’t like wearing the shirt on its own, because it was; see through, baggy, uncomfortable when tucked in and the logo rubbed on my skin and it was itchy. So they let me wear a plain white linen shirt instead. And they let me wear slightly different trousers because I don’t like the material of normal school trousers. I didn’t look too different, and still looked smart. But, when the school got a new head teacher, he wanted me to wear proper uniform, and as the head of the special needs department had (for some reason) said that having issues with materials didn’t come under my diagnosis, I needed to get a letter from a professional saying otherwise.
So, instead of being diagnosed with Autistic Spectrum Disorder, I needed to be diagnosed with Asperger’s Syndrome, and to have it noted that it is typical to have sensitivity to certain materials. Which is what I busied myself with during the school holiday. I also came across a pitfall when I realized that, at 17, there wasn’t much in the way of help. I wanted someone to help me sort out my disability related problems with school and to help me fill out my Disability Living Allowance forms. There’s a group that offer help called the Adults with Asperger’s Team. But, they could only deal with people from age 18, and their children’s unit, with people up to 16. I don’t know if this is a common thing across the board, but to me that seems pretty shocking for 17 year olds…
Anyway, I did get my diagnosis and everything, but the school didn’t budge and I ended up leaving. Luckily, I did some part time study for a bit – long enough to come out with a B in English GCSE and a C in Math GCSE.
I remember singing to myself after my Mum had put me to bed. I would song Disney songs, at the top of my lungs until I fell asleep – it was just calming for me. I didn’t really listen to too much music, but my parents both had CD collections which I was familiar with. My Dad mostly listened to pop from when he was growing up, and Mum listened to some rock and some pop, but the more alternative stuff like The Cure and Soft Cell – but mostly Michael Jackson. As I grew up she got more and more current rock, like Evanescence and Muse.
As I got into my early teens, I started buying my own music. I think the first CD I bought for myself was a Red Hot Chilli Peppers one – because I loved ‘Can’t Stop’. From there I ended up getting into Evanescence; obsessively listening to ‘Fallen’. Mum didn’t mind too much that I was singing loudly all the time, and I wasn’t half bad, though I did improve a lot early on. My favourite bands were Evanescence, of course, My Chemical Romance and Placebo. No one else seemed to like Placebo though – I still love them.
By the time I felt like I’d nailed singing all the songs on ‘Fallen’, ‘The Open Door’ came out and it was a lot more challenging – I still can’t do most of it; mind you, I can’t really sing anything anymore. When I lived at home, I could sing non-stop and it didn’t bother anyone, and I wasn’t embarrassed. But since I stopped, I can’t start again. I’ve lost my voice. I know it’ll come back one day and I can get my confidence back, but for now, I feel like it’s gone. And I hate it. I have no confidence in my voice at all; so much so that I even feel stupid and self-conscious singing in the car, where the music so loud that you couldn’t hear me anyway.
I once competed in a singing competition in Manchester; my Dad took me. I wanted to sing ‘Lithium’ by Evanescence, but I wasn’t sure I could do it (I could, but not now), so I opted for ‘Call Me When You’re Sober’ instead. It was way more pro than I had expected though; it may as well have been a pageant. All the girls, younger than me I suspect, dressed up to the nines in show outfits, singing show tunes and pop songs etc. with backing tracks and dance routines – and then me, black hair, black dress and converse, singing some unknown rock song with no music. Though I do feel I was braver than they were – standing up in front of a crowd and singing with no music is a pretty ballsy thing to do, especially in a competition like that! I didn’t win anything though, but my Dad was super proud.
I also sang in a school talent show. I was supposed to be going on with a band, singing a few Evanescence songs, but they let me down at the last minute because they couldn’t play the music. But instead of duck out of it completely, I went up alone and sang 3 Evanescence songs – just me, stood in the middle of the stage, with my entire school year looking at me. And I wasn’t even that popular. People ended up singing along and chanting my name though – I think everyone realised how hard it must have been for me. Plus, the school Jazz band, run by the head of the music department ended up wanting me to be their singer. I had to decline though because it just wasn’t my style of music.
I usually ended up singing in drama classes etc., but the only occasion that sticks out is when I sang for an open evening the whole school was having, and I chose to help represent the drama department (a few of us were there, doing various bits and pieces). Anyway, we ended up getting the karaoke machine out and I sang ‘My Immortal’. Parents and visitors were passing our room and by the end of the song quite a few had gathered, so it was pretty nerve wracking – and my drama teacher ended up crying because he said that the emotion I put into the song was so powerful.
Throughout all of this, I’ve only really sang acapella, and it’s because I struggle SO much to keep in time with backing music. It’s a really annoying issue and I get so angry at myself for it, but I just can’t seem to help it. I don’t seem to have a sense of rhythm.
I miss singing so much at the moment. I hate not being able to do it, and I do try every now and then to get through a song – but it’s so disheartening to get it wrong when I know I used to be able to do it. I still put some up on YouTube, but they’re usually just a practice. I don’t really care what people think about it, though I don’t get many negative comments because I don’t do popular songs. I can’t remember if I originally started YouTube with another channel name with just singing videos; though I know I started my current channel with singing.