There’s Something Wrong With My Leg

Dear Diary,

A few months ago I realised that my legs (especially the right leg) were weaker than usual. It was annoying at first but mostly dismissible. However it has been getting much worse and over the last few weeks I’ve gone from not being able to go on walks with my family to being completely unable to walk down the street or work.

It’s frustrating to say the least as all I want is answers to what is wrong. I look at people walking and now can’t believe the physics – “how are they doing that?” I think when seeing people walk up slight hills or stairs. Nothing in my body hurts nor are my reflexes poor but that makes it all the more perplexing.

I was supposed to have a schedule. Finish work and then clean my room, get my driving license and then start writing more often as well as doing more hobbies. I wanted to be more independent and more self-sufficient.

However having to pause multiple times whilst simply going up and down my home’s staircase; suffice to say, does not line up with that plan. My autism wants to be better and is angry that I can’t do things. My autism and OCD are only manageable when I am both well rested and healthy.

I have to be rested mentally and physically to function as a normal human being. I have to be healthy in order to function as a normal human being. Having unexplained symptoms that I’m going to have to wait at least five weeks to be diagnosed is not congruent of functioning as my best self.

Every single day is so hard. I’m trying to drown out the OCD fear, the autism-ness and the depression constantly whilst being asked to function as a normal human being and do simple basic shit like clean my sink. Having a health problem adding to that is even more hard.

After my appointment with the doctor today (who was lovely) I have to get a blood test in a few weeks time but he was unable to give me advice other than “take it easy, do what you can and then a little bit more and if that makes things worse, ease off and let us know if the problems get worse.”

I have a driving theory test to go to in early November but I think I may have to delay that as I have no idea how worse this is going to get until then. I don’t think I should be going to driving lessons either as my right leg is obviously the one that controls the clutch and it would put a lot of strain on it.

I’ve been worried about my appointment for days and I’ve barely brushed my hair. I’ve been “contaminated” (giving into my OCD by avoiding the things I like) all week, somehow thinking that after my appointment the cause of my leg weakness would be discovered and treated by some medication I need to take twice daily for a fortnight. I thought after today I’d get to go and shower and “restarting” and being “uncontaminated”.

However I’m currently sitting in my dressing gown feeling sensory overload over the skin and oils on my face and back – upset that I can’t go to the shops and buy myself a bag of chips.

What Now? – Being Off Work With No Plans And Growing Anxiety and Uncertainty

Being a grown-up is a hell of a lot less fun than I expected.

Dear Diary,

I’m back writing on my laptop in my dressing gown and drinking a blackcurrent fruit shoot – mind racing a million miles an hour.

I’m trying to locate the cause or reasoning behind this nagging uneasiness I’m feeling and have yet to come to a conclusion. I’m probably embarrased and stressed out that I vommitted at work; I’m probably worried about going back to work in five or so days; I’m probably worried about my theory test and the content I need to learn by then and various other fears; And yet none seem to be the root cause.

I feel like I’m waiting to go back to school at some point and fall back into the routine of being a high-schooler. I’m waiting to be plucked from my new life as a working adult and placed back to where I truly belong, the place I was for most of my life.

Perhaps it’s being off work that is confusing me – (although this week off was desperately needed.) Maybe I’m feeling discombobulated about not following my routine as I have nowhere I need to be. My physical health is very poor; I can’t even walk to my Dad’s car without being extremely out of breath. I may stand still for hours upon hours at work, walking on even-flooring and walking quick short distances and back but these days I can’t walk down the high-street without repeatedly stopping for breath. In my entire life I have never felt this physically unfit.

Whatever the reason; I am lost and not sure where to go from here. I feel like a child playing dress-up, missing the carefree-ness of being a high-schooler (though high-school in on itself wasn’t exactly carefree) and I am scared of being given time to myself.

Food is still bothering me. Textures and hard bits in meats are causing me great discomfort and upset. My OCD is not great; I’m opting to not care about my appearance out of depression and not trying to make myself feel better by wearing my favourite clothes or accessorise.

I guess you could say I’m in limbo. I’m unsure of what to do and anticipating disaster and so are not doing anything productive or beneficial. I’m reluctant to start challenging my OCD or making myself feel better because I feel so damn tired. The idea of redecorating the house before a tornado strikes feels pointless so to speak. I’m just waiting for my tornado – and a tornado will always, always come – in a run-down shack instead of enjoying whatever time I have left in a cozy cottage so to speak.

A Great Day Until I Found Gristle In A Chicken McNugget

TW: Don’t read if you have anxiety surrounding food and it’s texture.

Dear Diary,

I had a great day at work today. It was genuinely really enjoyable and happy and I was in a fantastic mood until I went to McDonald’s afterwards to get some food.

I ordered what I’ve been ordering for ages: coke, fries and 9 McNuggets and things were going great. I was munching on them on the drive back until suddenly I felt something in my McNugget. It was hard and tough and I knew almost immediately what it was. I convinced myself that it was something else until I took another bite and found an even bigger bit of gristle.

Spitting it out into my takeaway bag I finished my meal with a deeply uncomfortable feeling in my stomach.

The thought of the gristle caused me to panic. Most people get upset when they find something less than desirable in their food but call it autism, OCD or something else, I was really upset.

So upset, that I feel like I can’t go to McDonald’s ever again because the thought of another McNugget having gristle in it is really upsetting for me.

What I need to do is sleep and not obsess about gristle or McNuggets and right now that’s what I’m going to do – sleep and have a lie in.

Stay safe.

-Medusa

Intrusive Thoughts To Do With Greed + Food OCD

Food and me have a complicated history. I’ve always been a big eater and have always enjoyed eating take-outs, at cafes or at resteraunts with my family. Despite how much I’ve loved food, it’s also been a large part of my OCD.

Throughout my childhood certain food was viewed by my OCD as ‘contaminated’. Not by germs ( although ‘germs’ was the terminology I used to use to describe the thing that was ‘contaminated’; a word later added to my language.) or an actual founded in reality, albiat very unlikely concern such as it having some sort of disease; my ‘contamination’ was different.

It was the grease from a bagel, the tomato ketchup from my brother’s hotdog, the slight possibility of a crumb from a sausage roll falling on my scarf when I’m on holiday to Centre Parcs e.t.c.

The thing that was different about my OCD as my phycologist pointed out later was that when I felt like the food had ‘contaminated’ me, I was never in fear of consequences like a loved one dying or getting sick from the food – the typical OCD fears that would fuel the compulsion ( or at least the typical line of thinking that if I do something or fail to do something, X, Y and Z will happen as a result. )

My OCD has rarely been like that. Don’t get me wrong – my OCD is by no means worse or better than any other person’s is – it’s just different presumably because I’m, well, autistic.

When I got ‘contaminated’ by food or any other thing I deemed undesirable, I was not afraid of something bad happening as a result – It was that I felt wrong and bad. It’s hard to explain the way being ‘contaminated’ feels. It’s not real, ‘contamination’ is a way for me to deal with life – I know. But the feeling is awful.

Something that one of my phycologists once said about my OCD being different to the traditional OCD made me think oneday in my appointment about how upon feeling ‘contaminated’ by apple juice – I searched on Google Images ‘celebrities with apple juice in their hair’.

I wanted ( and still do to a degree ) to be like ‘everyone else’, I looked at these ‘normal girls’ in my real life and celebrities. I looked at the girls in my class and on the TV, who I could never quite understand and found flaws in myself in ways that were unconventional. The worst part is that even if someone else got  apple juice on them for example – that was okay! They were not ‘contaminated’ because it was only me who got contaminated…

Because at the end of the day my OCD is not about preventing something bad from happening, I think my OCD is about my autism.

So that brings my point to today. I go out and buy spicy chips from the shops, food I buy with my own money that I truly don’t need as I’ve already ate. I eat them and now I feel the familiar feeling of being ‘contaminated’. I feel greedy because I did not need to eat them and I hate myself slightly for being so greedy.

So tonight I showered, giving into my OCD and as I sit here late at night on what would have been a school night had I still been in school ( a transition that my autism is struggling to comprehend – that I’m no longer in high school ) and a plan to hang out with a friend for drinks tomorrow and all I can think about is how those spicy chips made me feel.

But we all know it’s not really about spicy chips. It’s because I have a social event tommorrow and I’m nervous. It’s because I’m realising that I am no longer a child and have new challenges. It’s because I am autistic. I just wish my brain would believe it.

Parents and Autism

Dear Diary,

I was never great at communicating with my parents growing up. Call it autism, depression or the fact that I had OCD and my parents had no clue what I meant in my early years when I told them about ‘germs’ – or a culmination of all these things but I truly was rubbish at communicating my feelings.

After I grew up a bit, I understood a lot more about what I thought a family was about; and so I opened up a lot more about how I was feeling and then I also began to rely on my parent’s approval without even realising it. I am so reliant on my parent’s opinions and approval and they don’t understand it. My parents are by no means pushy or try to stifile or undermine mine or anyone else’s opinions but they are human beings with different opinions.

I feel alone in the world when I’m not relying emotionally on my parents because as soon as I realised properly in my autsitc brain that I had parents – I became subtly dependent on their approval. It’s not that I didn’t still yell at my parents, roll my eyes and storm out in a huff – because believe me I did (and still do). It’s more like I have the need to tell them every little thing that goes on in my life because I need to know that what I did was okay. My parents already do so much for me and I don’t think they actually realize how much I appreciate all that they do because I’m not good at communicating it all the time. They make sure that my room is clean, my clothes are ironed and I get driven to work and cooked hot meals without any complaint from them.

The trouble is that they don’t understand how I don’t understand that I need to keep my room clean and that I have to iron and wash clothes and arrange things. In my head I’m only a few years away from not living in my room full-time so the notion of keeping my room clean is pointless. Of course their argument that you could say that about anything is valid but I just don’t feel like it is correct.

One more thing about my parents that I find so frustrating as a young person with autism is the fact that they seldom remember I am autistic at all times. When I do something ‘autistic’ in public like speak much louder because I’m not good at regulating my volume in different places – they treat me like they would any other 18 year old who is being loud and seem to forget I’m autistic. When I talk about something too much they think I’m obsessed and don’t understand that sometimes I’m just trying to process something I like or really don’t.

Here lies my main problem and the reason I need to grow-up. Deep down no matter how much I know in my heart of hearts how much they love me and how much time, money, effort and sacrifice they put into getting me help and making sure that I am ready for adulthood, even with all of that and more; I am angry at them. And at the same time I just want to make them proud.

I am so angry and annoyed that they didn’t realise I had autism sooner. After I was diagnosed my mother said that “Finding out I had autism made everything make sense – it was the missing piece of the puzzle” not in an unkind way but it made me wonder how could you not know? Maybe not that I had autism but that there was something wrong with me when I was unable to touch my toys without washing my hands and brushing my teeth because I had OCD. I obviously didn’t know that I was different but surely they must have. I’m angry that whilst of course I joined CAHMS in primary 6 – my parents didn’t figure out that I was wrong. My mother told me that they thought I was just mature for my age which is why I preffered speaking to the grown-ups on play-dates.

Of course my parents are only human – two humans with three other kids, a morgage, a house and jobs to juggle; and if we are being honest I took up alot of those juggling balls – so it is truly unfair to blame them for not understanding a condition that mainstream media didn’t and still doesn’t understand. It’s also completely unfair to expect two humans to be able to 24/7 be able to deal with the autistic behaviour I do and not be in the slight bit frustrated how I wake them up because I want to talk to them.

It’s also truly unfair to blame them for things that they could not have known. Like my mother’s offhand remark of “Always stand up for yourself” a hallmark quote that she couldn’t have known I’d take literally. A quote that led to S1 me taking on S3/4s girls who were rough and ready because I stood up for myself for a stupid comment that would have saved me alot of friends, tears and pain had I just ignored. Me following her advice from nursery because I didn’t understand about how varied and complex most situations with conflict or drama can be. So why do I still feel angry about it? And why do I now get annoyed when my mother tells me very simple things that I obviously should and shouldn’t do in a situation which makes me feel like an idiot when I have a very recent history of taking the words of a cat poster to heart?

Why do I still feel angry at taking my middle aged Dad’s advice to write my phone number and e-mail down to give to all the girl’s in my new primary class in P6 on my first day only for them all to somehow have lost the bits of paper by the time I started my first term? Why am I annoyed that my Dad still has no clue about what a lot of my conditions actually are?

Why do I feel so upset that as a 18 year old woman I have just literally asked my Mum if it’s ‘okay’ to go to a nightclub with my colleagues. Not is it okay on a specific night because we have plans – but is it okay at all.

It’s not all bad though, my Mum disagreed with something I did recently – not in a nasty way but a simple “wouldn’t have done that myself” kind of way. I obviously don’t agree with her as I believe I did the right thing in the situation but her critisism did make me think about certain consequences of doing similar things again which is without a doubt a good thing. So I made some progress really today. I acknowleged my mother’s reasonable advice, respected myself for making the choice that I made and moved on. I think this mindset is the place I need to be at. I need to be Miss Independent but able to accept my parents opinions and advice without ignoring it or treating it as gospel truth.

I don’t think they’ll read this post as I’m obviously not going to directly message them about it but if they do read it they should know that I’m obviously not trying to upset them, nor trying to make them feel like bad parents, people or anything like that. They are fantastic people and parents – I am simply unable to verbally communicate some of this to them.

Take care of yourselves.

Medusa.

Back From Holiday Blues x 10

Dear Diary,

I’m back from my holiday and I have got my new iPhone 12 mini using my first pay-cheque. I’m not feeling good though; I feel like I want to scream and smash things and cry.

I returned home from Alton Towers and struggled to sleep only to then lie-in until midday. I can’t touch my new iPhone all that often because my OCD is appalling. I don’t want to be at home and I don’t want to be at work. I feel like smashing my laptop and running away. Little comments today have been making me really upset and I’m angry at everyone. I don’t want to be here anymore. I’m tired of being like this.

I just want my brain to stop for five minutes but it won’t. I want the weather to cool down so that it’s easier to sleep and I want to stop feeling troubled by my middle ear problems. I want to not worry about how wrong everything feels – because it does! Everything feels so wrong and I can’t explain why. My OCD is terrible and I’m feeling so bad.

It’s hilarious that I work and stay busy but it inevitably ends up causing me to burn-out and yet when I have time-off I can’t cope with the lack of routine. If I’m busy I have no time to clean my room and do other tasks and when I’m completely free I’m lost on what to do (especially when I’ve already wasted half the day.)

I fucking hate my mind and I just want things to feel right.

An Autistic Girls’ First Day at Alton Towers: The Good, The Bad and The Queasy

Dear Diary,

Today I went to Alton Towers with some of my siblings and father. We left very early in the morning – especially since I’d just done a night shift at work – to head off to Staffordshire to enjoy our two day and night trip with both days at Alton Towers and the nights at a Premier Inn nearby.

I was struggling a bit to sleep in the car. I couldn’t seem to get comfortable and was becoming a bit distressed. Much like a toddler having a temper tantrum in frustration about not being able to get the new toy she wanted, I too was about to throw something out of the frustration of not being able to get comfy. In these moments of frustration I become almost like a toddler; I lack perspective and advanced deductive reasoning and want to scream. Eventually I managed an hour nap in a position that could not be described as advisable for road safety but I was strapped in and following the law.

When we arrived at Alton Towers today I was so excited. I almost ran round my family in excitement wanting to express how happy I was and how much I loved them all. This is perhaps not the average behaviour of a neurological eighteen year old but I was happy.

I went on The Blade first and loved it. My head felt wobbly in a good way as I went high in the air and back down again. I definitely want to go on it again tomorrow!

The next ride we went on was less good. I went on with my sisters and at first it was fine but as we were carried higher in the air we also began going round and round and round and I could feel my stomach lurching. I’d had about three hours sleep, not really eaten anything this morning (as I’m fussy about what I eat) and I have middle ear difficulties as I’ve wrote about before on this blog.

The culmination of these different challenges were a disaster on the next ride I went on, which was Spin Whizzer. I know what your thinking reader – why the hell did I go on a ride called spin whizzer when I was still terribly nauseous from the last ride? – and the answer is that I’d never been sick due to a rollercoaster before today and that I also wanted to do what my younger sisters were doing.

After sheepishly wandering off the Spin Whizzer like a drunk Scotsman after a few too many pints; I run behind a bucket (the bins were not the right shape for sticking your head in) as it was the only non public place to go, and hurled my guts up.

I felt better after this and even more so after I’d had my hotdog at lunch (though I nearly hurled it up on the picnic bench after finishing it) after consuming it with what can only be described as the resilience and strength of a naval officer.

Next we went on The Wicker Man which I thoroughly enjoyed despite the very long wait in line. My and my youngest sister are desperate to get some merchandise from the ride tomorrow.

As a good ‘family ride’ we all went on the Congo River Rapids and I bought the picture of us all in the boat for a whopping £10 since my Dad is far too grippy (and perhaps far too wise) to spend that amount of money on a printed out photograph.

I went on The Oblivion which I loved and The Nemesis which I’m glad I’ve gone and bought the t-shirt but never wish to go back for leggings. After a substantial time away from Spin Whizzer I gave it another go with one of my sisters and this time I neither puked nor lived in fear of doing so – although I must admit a slight uneasiness in my stomach stopped me from going on it immediately after again with my sister.

After a quick snack of strawberries, marshmallows and melted chocolate, my family and I made our way to the Premier Inn hotel we are currently staying at. We visited Burger King for dinner (which I’m half-convinced is going to give me food poisoning symptoms in the next half hour) and Spar for snacks such as the Monster Munch I ate whilst writing this post. I of course am yet to get into my pyjamas as I hate having the smell of anything on my pyjamas and as we all know snacks tend to leave crumbs but I shall soon wash my face, brush my teeth and get changed – maybe after some Wine Gums and YouTube videos. I’m next to one of my sisters and currently our whole squad is on their devices with various snacks resting our legs and feet after an adventurous day at Alton Towers.

The castle and the bench area where you can watch the live performances.
Entrance Area of Alton Towers.

My First Pay Cheque/My First Three Weeks of My First Job

Dear Diary,

I’ve been keeping a small diary of my days as a waitress in paper from my first day as to not forget anything. Perhaps I will one day publish them anonymously but for now it is a nice ritual I do as soon as I get home from work.

I can’t really believe that I have a job. I can’t believe that I’ve left high school or that my life has completely changed. I reckon that getting a job has insured me that I’ve kept my routine and the long hours have enabled little time for rumination. There are draw-backs to this of course. I may be thriving…or, I may be a bottle of coke being shaken and will eventually erupt. Only time will tell which is one thing that sucks about being autistic – I never know how I’m feeling until it’s too late.

But I’ve enjoyed working as a waitress. It’s been really tough don’t get me wrong and my feet are in constant pain from blisters but I’ve enjoyed working so much. No-one aside from my boss knows that I’m autistic so far and that’s the way I’m going to keep it (unless it is necessary for me to reveal that information) secret from my colleagues. I would hate to be treated differently by my colleagues who don’t understand what autism is as they don’t know me well enough to be able to see who I am beside the diagnosis.

I’ve made some money and it feels really good. Having the ability to buy myself a new phone in the next few weeks is an amazing thing. I’m extremely grateful for my parents for giving me lifts to work at early morning shifts and lifts back at late hours and I appreciate it more than I feel I am able to successfully communicate.

Something that I’ve loved about my job (aside from meeting some really cool colleagues) is meeting some incredible and kind customers. I’ve had talks with people who have left an imprint on me with their kindness and their respect. I’ve recognised people like me and spoken to them and their parents and felt a lovely sense of community with people like me. I have never seen my autism as anything positive but my ability to recognise a little boy like me and treat him with respect and fun meant so much to his parents they told me and meant so much to me.

So yes. I’m now consistantly tired; Occasionally bored; Frequently excited due to interesting events at work; Sometimes insecure about forming friendships at work but mostly relaxed around a great bunch of people; Endlessly in pain over my feet but ultimately damn happy. Things are really, really, really, good right now.

University Decision: Post-Making My Choice

Dear Diary,

I’ve chosen a course that in part surprised me. I know that I can excel at it and I am genuinely excited to get started!

Of course there are the wriggling doubts, the fears, the nagging voice in the back of my head whispering that I’ve made a huge mistake – which sucks but is also normal. I got into a fantastic course that may not have been my ‘dream course’ but is something that I love and can’t wait to begin.

So yes with the celebration comes slight mourning – mourning for a S1 girl’s dream and mourning for the countless other opportunities that every choice we make in life limits you to.

But despite some sadness and anxiety; I feel relieved. I have a clear view of what I’ve got to do and how I’m going to do it and that feels really good.

I am very happy and I think that this course will not only be badass, exciting and that guarantees a career; but will also make me happy in life.

Only time will tell but today is a good day and it requires a celebration – one preferably when I’m neither sunburnt or exhausted from adrenaline. One thing is for sure; I can’t wait to get started!

Take Care.

Medusa.

University Decision: Pre-Making the choice

Dear Diary,

The time is here – well a mere matter of hours away – for me to decide where I want to go to university and what course I want to take.

There are a few things for me to consider in the next short while. There are things to consider about both my capabilities my dreams and what the hell I want to do with the rest of my life.

I’m an insecure eighteen year old with autism and mental health problems; trapped in the mindspace of a primary one girl, who longs to be accepted and liked by the other kids in the playground. A girl who can’t understand why people don’t like her. I’m someone who lacks confiction in her decisions without letting on to the fact. I’m someone who still struggles to understand how she could possibly be autistic one day and on another day can’t touch her belongings because her OCD is too bad.

This is why I’m scared. I’m scared that I’m going to end up miserable in two ways:

Reason 1: I’m scared that by picking one choice I will be passing up on an opportunity I have always wanted and may never get again. I’m terrified that I am choosing based on fear of the unknown. That I’m using any excuse to not take a leap of faith and do something I’ve wanted to do since I was little. I’m afraid that I’ll end up filled with regret and anger at myself.

Reason 2: I’m scared that if I pick something and take a leap of faith it won’t work and I’ll be disheartened, sad and crushed. I’m scared that I’ll not be able to manage the course either by being not good enough at the course or by having a mental breakdown, or by both. I’m scared that I’ll miss an opportunity to discover what I want to do by rushing into an idea that could make or break me. I could take my time and see, try something and then if I can do it – move on to my dream course (if it remains that).

I’m so scared of regret, I have enough of it from my years of letting my OCD control my life and I don’t want to add to it. But whatever I do regret is always a risk.

I need to spend the next few hours thinking. Will post after I make my choice.

Medusa.