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.

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.

Back From Holiday Blues x 10

Dear Diary,

I’m back from my holiday and I have got my new iPhone 12 mini using my first pay-cheque. I’m not feeling good though; I feel like I want to scream and smash things and cry.

I returned home from Alton Towers and struggled to sleep only to then lie-in until midday. I can’t touch my new iPhone all that often because my OCD is appalling. I don’t want to be at home and I don’t want to be at work. I feel like smashing my laptop and running away. Little comments today have been making me really upset and I’m angry at everyone. I don’t want to be here anymore. I’m tired of being like this.

I just want my brain to stop for five minutes but it won’t. I want the weather to cool down so that it’s easier to sleep and I want to stop feeling troubled by my middle ear problems. I want to not worry about how wrong everything feels – because it does! Everything feels so wrong and I can’t explain why. My OCD is terrible and I’m feeling so bad.

It’s hilarious that I work and stay busy but it inevitably ends up causing me to burn-out and yet when I have time-off I can’t cope with the lack of routine. If I’m busy I have no time to clean my room and do other tasks and when I’m completely free I’m lost on what to do (especially when I’ve already wasted half the day.)

I fucking hate my mind and I just want things to feel right.

The Night Before Prom

Dear Diary,

I’ve said goodbye to many teachers who have supported me and whom I genuinely care about. My last day is tomorrow evening where I’ll go to prom, enjoy a meal and get my high school graduation certificate.

I’m nervous for tomorrow but also so excited. I have a beautiful dress, I’m getting my hair professionally done, I have beautiful accessories and makeup and I’m so excited!

I’m currently painting my toenails for the prom and I’m going to choose my jewellery – I’m definitely wearing my Elena vervain locket and my Elena ring as well as some of my Pandora charms.

I have a busy day tomorrow so I’m going to get some sleep. This may be the shortest blog post in the history of humanity but I want to record how I’m feeling.

Take care and wish me luck!

Medusa

The nail polish I’m wearing to prom tomorrow.
The beautiful bow my neighbour made that I’m wearing tomorrow!

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.