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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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.