A Good Day (Minus Neck Weakness)

After a good ‘restart day’ yesterday, I am back to feeling content. Today I went out for breakfast at ‘Morrisons’’ Cafe and enjoyed a baby chino and cooked English breakfast. Afterwards I went back into the car to wait until my family bought me my pizza of choice from the ‘make your own pizza’ section – an essential for me who doesn’t like cheese on pizza-

-What can I say I’m autistic.

As well as other goodies for this evenings. Being out of the house, living life in any capacity -especially getting a nice meal! – is beneficial like never before as it makes me realise that when I get better, I have a lot to look forward to.

Last night my OCD was bad with intrusive thoughts and insecure worries that ‘everyone hates me including my family’, but after getting a bit of reassurance from family and a nice Goodnight text message – I happily went to bed and have been undisturbed with self-esteem issues and fears since.

When I got home (after walking up the dreaded house steps) I had a rest on my chair and then proceeded to do my task for the day: printing off some photographs.

I did print them off. I did get my printer out of the cupboard and I did manage to achieve my goal. The problem is I am currently laying on my bed with my materials still on the carpet because my neck felt like it was so fragile it could snap off.

I know that if I wait awhile my neck will recover and I’ll be able to move again – at least move enough to clean away the floor – but there’s something undeniably discombobulating about seeing myself in the mirror unable to move without feeling as though I’m going to go headfirst into my bedside table.

I had to text my Mum and ask her to come and clean it up for me. Part of you wonders when you send such a text at 19 years old whether or not your parents think your at it. I wish I was at it so to speak. Then I could get out of it and carry on with my life. Gratefully my parents have been very understanding and helpful and I am lucky.

Overall today has been very positive. I enjoyed my trip out and am very excited to tuck into my pizza, Coka cola and jelly tots tonight. It is my ‘shower night’ (I shower every second day) tonight which does make me feel apprehensive and nervous. Having a shower has become a battle between me and my body. I usually end up nearly falling over and taking hours to get ready. Despite my neck issues and the nervousness for my shower I definitely count today as a positive.

Restart Day

Today was my Restart Day where I tried to get myself sorted both in terms of my mood and my OCD/autism.

I feel a lot more positive about my life. I no longer feel ‘contaminated’ and no longer feel like anything is ruined by me. It’s not the same thing as giving into my OCD, more like appreciating that there are correlations between what I myself feel comfortable with due to my autism and a harmful coping mechanism. I will do a blog post in the future exploring this further.

For dinner my Mum made me gammon steak (which she cut up into strips) to allow me to eat easier. It was really nice and despite the chewing causing my jaw to still be tired – it was an improvement that allowed me to actually enjoy my meal! The frustration of being unable to gobble up my food, rather than spend hours at the meal table, was still there, but my overall happy attitude made all this seem inconsequential and I enjoyed my dinner.

Tomorrow my Mum is taking me and my sister to Morrisons cafe for breakfast and I’m very much looking forward to this.

It has been a success but of course I’m still feeling funny. My OCD is not brilliant but it is by no means the state it was yesterday and the day before that. I also still am finding my mobility a problem. I went out to the car today for a trip down the shops (although I didn’t go into the shop) and back which was good but I also struggled to get up off the toilet earlier this evening. It’s swings and roundabouts in terms of progress.

Perhaps my new anxiety is also due to my officially deferring from university for another year and all this floating anxiety is, at least in part, caused by the consequent sadness. It’s a bittersweet feeling that is also weighed down by my inevitable tiredness from lack of sleep over the last few days. If anyone has any experience with autism spectrum disorder/mental health problems/etc you’ll know that the chemical equation:

Lack of sleep + OCD/Insert condition —> Disaster

I am keeping myself collected and calm as much as I’m able and I hope that tomorrow after a good night sleep, I’ll find it even easier tomorrow.

My FND Journey So Far

My GP then suggested I may have Functional Neurological Disorder. I was then referred to the hospital for Neuro-physiotherapy. His thought was that the Vitamin B12 deficiency had caused my symptoms and my nervous system has gotten mixed up with how to send and receive signals to my body even when I’m no longer deficient in Vitamin B12.

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Best Day Of The Year So Far (2022)

Dear Diary,

Today is the 3rd of January and I’m back from meeting up with my friend from high school who is currently at university. It was great seeing her and finding out all about her experience at university aswell as catching up.

The best part was that I felt happy. I’d made an effort this morning to wash my face, make my hair look pretty, wear jewellery and accessories aswell as wearing my nice clothes – which felt so good! I feel less misery-guts and seeing someone outside of my family after being stuck indoors with my B12 deficiency for the past months. I still needed to use my walking stick and I fell over at one point onto the pavement after loosing my balance but it was really nice.

It has made me much more positive and I feel much more tolerant in dealing with sensory problems and less irritable when it comes to family members who have gotten on my nerves for simply existing, a phenomenom which has afflicted thousands during the first lockdowns.

For the past few months I’ve sat by the phone awaiting a call from my G.P and co. like a clingy highschool girlfriend awaiting a call from a crush that’s just not that into her; so it was nice chatting to a friend for a change.

Things are not 100% good with me just yet though. My fall today was bad but not as bad as falling into the staircase wall and cracking my head on Christmas Eve or not being able to get up from a beanbag yesterday. I’m going to have to chase up the medical practice again and listen to that God-awful jingle they play whilst you’re on hold.

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.

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.

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!💍

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.

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.