Health Fears | Awaiting Blood Test Results

Note: These are fears to do with my physical health. Most likely I have nothing too serious. I don’t want to seem overdramatic or like I’m making light of serious conditions.

Dear Diary,

I’m realy scared.

I probably shouldn’t be; there is no true cause for panic yet. Doctors are confused but not extremely concerned – so it’s clearly nothing too dramatic; And yet I’m still scared.

A few months ago I noticed that my legs (mostly my right leg) was getting tired far quicker than usual. Throughout my life I’ve always taken longer and gotten tireder faster than everyone in my family- be it walking around a city centre or climbing up Ben Nevis. This was different though; My Dad grew concerned when upon a visit to Edinburgh I could barely manage to walk across Princes Street. I was stopping frequently because my legs were too weak. It had never been this noticeable before. I could convince myself that I was just lazy or unfit (even when I was struggling to do the everyday walk to the shops that takes ten minutes and that I’ve been able to do no matter how exhausted ) but when my Dad noticed then I admitted that I’d see a doctor.

The doctor looked into my eyes, checked my reflexes and told me to move my arms up and down and side to side – all good. The doctor told me that he’d get a nurse to do some blood tests and then we’d go from there. When I asked him what it is he thinks I could have, he said he wasn’t sure.

I got my blood test taken just under a week ago and I’ve been counting the seconds to call them back (they said wait a week but I’m going to check on day 6). I feel like I’m frozen just waiting to hear what to do next.

Tonight my work were going to a work dinner ( I haven’t been to work in weeks and can barely walk up the stairs half the time ) and I obviously didn’t attend. It’s the end of the season and tonight would have been my first ever proper grown-up work dinner. I was excited for it when it was mentioned four months ago before I went on sick leave.

I don’t know what I’m most scared of. Am I terrified of having some horrible rare fatal condition? Am I afraid that it’s nothing and that I’ve either been delusional or it’s something so insignificant that I’m embarassed for being in so much destress over it? I don’t know.

All I know is that until I get some answers I have no interest in keeping my room tidy, looking pretty or doing nice things. All I want to do is wait for my results, wait and be given information on how the hell to get better.

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.

Quick Post: A Lady Went Above And Beyond And Was Kind.

Dear Diary,

Today I went to Edinburgh with my Dad to look at the area surrounding my future university campus. Of course going shopping on Princes Street is an essential part of any visit to Edinburgh so as we walked along – or I hobbled ( calling the doctor on Monday because there is clearly something wrong with my leg ) – I looked at the windows of the various retail stores.

I went into Waterstones where I browsed the aisles of young adult fiction and vietnam-styled flashbacks raced through my mind at the sight of To Kill A Kingdom and From Blood And Ash – two books I’ve reviewed on this blog that will stay with me until I die, due to the sheer volume of cringe.

Anyway I digress, after Waterstones I went straight into Lush on Princes Street, Edinburgh and spoke to a girl who worked there. I told her about how I haven’t been taking care of myself properly and described some of my skincare and hair issues. The lady was lovely and called me “Honey Bun” which after being treated like I was a mature grown-up for the past months since turning 18, I thought was really nice.

The girl told me about the different skincare and hair products at Lush and helped me find the things I needed. I decided to get the Mask Of Magnaminty face and body mask 125g after the lady recommended it. I told her about my hair problems and she gave me two samples: Candy Rain conditioner and Rehab shampoo.

I told her about how I’m going to university at Napier in 2022 and about how I’m having a look around Edinburgh to get used to where I’ll be living after my gap year. She wished me good luck and a great rest of my day.

When I went to the counter to pay she wrote me a note and gave me a Scrubee Body Butter for free – as well of course the two free samples.

I’ve seen waiters, shop assistants and others be not helpful and uninterested in the customer but this lady was truly kind and made my day.

I thanked her for her kindness but I wanted to write this post to share how much I appreciate it, even if she never sees it. Because her friendliness and warmth made me happy and I’m 100% going back there to buy more goodies!

My Lush Haul

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

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.

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.

Miss Independent

Dear Diary,

It’s time to start being independent. It’s true, I’ve been over reliant on other people emotionally and in terms of looking after me.

During a phase of about 5 years I didn’t understand what having a family ‘meant’. It’s not that I didn’t have one, I’ve been lucky enough to always have a wonderful family but my brain failed to understand what that truly meant.

So after I realised ( with the help of TV funnily enough ) what it meant to be a family – I started over relying on it.

I’d spent so long not being able to emotionally interact with my family that when I finally learned, I went all in. I over rely on family members and people I admire to look after me. I try and do and belief things that exactly align with what they do and belief because I have a lack of self-identity.

It’s time to start taking care of myself. I’m an adult now and it’s time to take responsibility for the cleanliness of my room, my medication and other aspects of my life. It’s time to start being more independent.

Medusa.