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.

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.

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.

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.

Ear Blockage & Stress

Dear Diary,

My ears are blocked. Both the right and left ear have blockages of wax but the left is especially bad. My ears have always been a problem for me but right now it’s been terrible. What’s more terrible is that I have exams at the moment.

I’ve been very sick recently. There is an intense pressure in my left year, so intense that I’ve been sick and have been experiencing dizziness. What’s more is that the pressure in my ears is making hearing other people extremely difficult. I can genuinely not hear out of my left ear at all aside from the occassional burst of tinnitus.

It’s been hard to go to bed. Usually I listen to ASMR to help me sleep but I can’t hear it out of the left ear and the sound reverberates from my right one as a result. It’s extremely upsetting and frustrating. I have exams to do and I am struggling to sit up.

I had my ears syringed yesterday but that only removed the outer wax and the majority was stuck there. I have to keep studying. I have to go to school tommorrow. Wish me luck.

Medusa.

Knowing My Limits.

Dear Diary,

I’ve come to the realisation that I’m not doing great at a subject I’ve been sudying for a year. I don’t want to quit it as I may aswell carry on to potentially recieve a pass but I’m not feeling great about it.

I keep thinking ‘I should have studied more’, ‘I should have done this – I was capable of doing this’ and ‘I’ve let myself down’. However in all these angry self-hating thoughts never have I allowed myself to think of the reasons why I’ve struggled.

The lockdowns, the not being able to do my routines, not being able to go to my appointments in person, feeling really unhappy and dealing with my OCD. All these factors and more have all added to my stress and inability to focus.

Despite knowing this, despite logically acknowledging that these things are true – I don’t believe it. I just feel bad. My brain hurts and I feel bad. I could be doing more but I’m going to go to bed.

Medusa.

To Make A Choice To Try

Dear Diary,

I had a choice today; a simple choice that could make a huge difference in my life.

I’ve been feeling like I don’t want to be here anymore for a few weeks now (not suicidal – just a wish to not exist). A feeling that if there was a magic button and I had a choice to remove myself from existence, I’d press it.

The world has felt bad and I’ve been feeling miserable. My OCD is bad, my self-esteem is bad and my anxiety is through the roof and whenever this happens a simple question goes through my mind “Things are always going to end up like this so what’s the bloody point?”.

I suppose it’s normal to be negative whilst being depressed but it still sucks. Knowing that I’m going to have to deal with my autism related OCD and anxiety for the rest of my life is horrible to think about and it hurts to think about.

Whilst being in this vortex of misery other aspects of your life gets sucked in too – aspects such as your schoolwork, your appearance and the tidiness of your room. As seemingly inconsequential as these three things seem, they all add up and lead to a very depressing situation.

So after all that; my choice came today. My exams are starting in the next week – exams I’m woefully underprepared for – and the thought of doing any studying felt impossible. It was physically and mentally straining to pull out my textbooks and open my laptop. I confess I nearly quit twice and I nearly threw my laptop in frustration.

But I chose to keep studying; and I ended up doing some good revision. Despite every part of me wanting to curl up in my bed and want to die – I chose to do something productive and it has made me feel better. Schoolwork feels that little bit less worrisome and I feel more in control of my life.

I’m still not feeling 100% – or even 50% but it’s a start and after today I want to keep trying.