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.