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.

That’s MY Thing! – Feeling Territorial Over ‘Having Problems’ And The Embarrassing Reality Of Being Jealous That You Are Not The ONLY One In Your Life Who Has Similar Problems

Feeling like you are the only one feeling a certain way is awful; but the complex feelings that develop when you learn that some people close to you, outside of the people you know through your disorder, also may have similar issues, can be complicated to process.

Dear Diary,

Perhaps the most strange of feelings is the realisation that your wish of being accepted by the people you knew before your diagnosis is trumped by your misplaced-irritation at no longer being unique.

I spent so long subconciously treating my OCD, depression, anxiety and autism as my defining traits, which for all the time I’ve spent sad, anxious and doing compulsions – is understandable. Everything that was wrong with me has become the very thing that defines me. I am the one with issues. I am the one who has had to deal with mental health struggles and I am the one who has a messed-up brain.

The problem with thinking like this is the fact that in my misplaced jealousy about my so-called soul defining characteristic – the thing that only I have – is not exclusive to me.

You spend so long annoyed about being different and being a certain way that you begin to view it as the only thing about you that matters; that it’s the one thing that makes you different and special – even if it’s for what you percieve to be a bad reason.

When you meet like-minded people through your disorder/s it feels like it is something away seperate from your day-to-day life and those you know previous to the diagnosis are in a seperate ‘box’ so to speak. That is not real life though. People who are alike end up finding each other, or knowing each other anyway because that’s how life works. Things can never be kept completely seperate and that is the reason for so many good things. If sections of our life never interlapped no-one would ever have friends or have relationships in anyway.

The reality of the situation is that just because other people I may know have their own struggles and challenges to overcome, it doesn’t make my challenges and achievements any less important. The only thing that you can do is support the people in your life who have done the same to you and continue to make the most out of your life. One person’s struggle does not make another’s less important and feeling territorial over certain ‘problems’ doesn’t help.

It may feel weird to realise that your not quite as different to the people you have known for years as you thought you were; but just maybe it will ecourage you to be kinder to yourself. Afterall the people you care about are not defective or wrong – so many it’s about time you stop viewing yourself as such.

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.

Day Off Work!

Dear Diary,

I had today and yesterday off work and tomorrow off as well meaning that I’ve had a lot of spare time to get stressed, overthink, scare myself with horror movies and stressfully over-analyse every social interaction I’ve had all day – all of which is not good! Today however my Mum bought me a lovely Garnet ring from a lovely lady selling them from a stall and it made my day!

Having a few days off is essential to stop me or anyone else burning out of stress and over exhaustion, but it leads to other problems such as not being busy. Working leaves no time for OCD, overthinking and ruminating but working too often and frequently leads to burn outs and depression. It’s finding that balance that’s important.

Even now as I write this I’m feeling like throwing my phone across the room – not because I’m angry but because I’m overtired and don’t know if what I’m writing is me or some role I feel the need to play.

Anyway, me and my mother came across a stall and there were beautiful pieces of jewellery on display for great prices and my Mum asked if I wanted one! At first I couldn’t decide which one to go for but very quickly my ring caught my eye. The lady told me it was a garnet stone and I tried it on. She gave me a discount and it was so kind of her.

My ring is lovely and I’m going to wear it tomorrow to my sisters 16th birthday dinner! Thanks Mum. X

My new garnet ring!💍

An Autistic Girls’ Second Day at Alton Towers: Fun, Heat and The Smiler

Dear Diary,

Last nights sleep was anything but easy as the room was sweltering despite the air conditioning being on full blast. Eventually I managed to get some shut-eye and awoke to find that my boss has put me on the 9-5 shift the day after next. (I’ve loved working but this morning I just wanted to quit to relax!)

I listened to music in the car using my AirPods and purchased the new iPhone 12 mini 64GB from Carphone Warehouse. After accidentally putting in the wrong email address I tried contacting them to fix the situation and got very annoyed. The number I called basically said go online for answers (which weren’t there) and then I got in contact with my first message link employee who I had a rough relationship with. Basically I had put the wrong first line of address in when she asked me to confirm and I got mad at her not realising the mistake was on me but when I realised my mistake and told her to change it she said “Can’t help you – call the number-“. I then found someone else who helped get everything arranged and I am awaiting the phone on the 21st this month; a phone that I used my first ever proper grownup pay cheque on.

The first ride I went on was of course The Smiler. I must be getting old because the main worry was if I would feel sick afterwards rather than the rollercoaster itself scaring me. It was really fun but I had to take a major time out afterwards due to intense nausea.

I went on The Oblivion again – this time with my sisters and went on Rita for the first time as well as returning to Spin Whizzer and The Blade one last time.

The weather was hot and I felt slightly uncomfortable due to it but wore enough sunscreen to prevent what happened before my prom where I had second degree burns. Now that, had been a disaster I was unwilling to repeat. I perhaps wore long sleeve tops in the fear of preventing that, rather than just be extra careful and wear a T-shirt. Whatever the reason I was hot and grumpy at times but I genuinely had a lovely time.

My Dad took us out for dinner where I ordered sirloin steak and peppercorn sauce and then bought us sweets and crisps. As soon as we all got back to the hotel I took a much needed shower and I am currently sitting in my pyjamas with one of my sisters, debating internally whether or not I should open my Wine Gums or not. I will I think, just not the crisps as the smell will make me unable to relax.

Overall so far this holiday has been incredible and I’ve enjoyed every minute of it. My Dad especially has been wonderful as he has waited patiently on us all on each ride, buying us merchandise and food and ensuring that we all have a great time.

Tomorrow we are going to either York or New Castle and I’m so excited to have a more relaxed day with my Dad and sisters and maybe even stop off at a service system and get a KFC.

Until then, Bye.

Medusa

My Smiler pin badge.

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.

First Day At Work

Dear Diary,

I started my first job today and I had a great time! It was weird being a grown up when I’m so used to being the pupil in school but I loved every minute of work today and I can’t wait for tomorrow where I’ll be covering the night shift.

When I got home I was quite tired and I felt very sensitive. When I told my parents a joke that didn’t land and they thought I was being serious – I felt really hurt. I started thinking that they hated me and thought that I was bad. This is a sign that I’m tired and my OCD are causing my brain to malfunction.

I won’t let my own insecurities ruin an all round great day so I’m going to go to bed in a minute and get a good nights sleep!