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.

What Now? – Being Off Work With No Plans And Growing Anxiety and Uncertainty

Being a grown-up is a hell of a lot less fun than I expected.

Dear Diary,

I’m back writing on my laptop in my dressing gown and drinking a blackcurrent fruit shoot – mind racing a million miles an hour.

I’m trying to locate the cause or reasoning behind this nagging uneasiness I’m feeling and have yet to come to a conclusion. I’m probably embarrased and stressed out that I vommitted at work; I’m probably worried about going back to work in five or so days; I’m probably worried about my theory test and the content I need to learn by then and various other fears; And yet none seem to be the root cause.

I feel like I’m waiting to go back to school at some point and fall back into the routine of being a high-schooler. I’m waiting to be plucked from my new life as a working adult and placed back to where I truly belong, the place I was for most of my life.

Perhaps it’s being off work that is confusing me – (although this week off was desperately needed.) Maybe I’m feeling discombobulated about not following my routine as I have nowhere I need to be. My physical health is very poor; I can’t even walk to my Dad’s car without being extremely out of breath. I may stand still for hours upon hours at work, walking on even-flooring and walking quick short distances and back but these days I can’t walk down the high-street without repeatedly stopping for breath. In my entire life I have never felt this physically unfit.

Whatever the reason; I am lost and not sure where to go from here. I feel like a child playing dress-up, missing the carefree-ness of being a high-schooler (though high-school in on itself wasn’t exactly carefree) and I am scared of being given time to myself.

Food is still bothering me. Textures and hard bits in meats are causing me great discomfort and upset. My OCD is not great; I’m opting to not care about my appearance out of depression and not trying to make myself feel better by wearing my favourite clothes or accessorise.

I guess you could say I’m in limbo. I’m unsure of what to do and anticipating disaster and so are not doing anything productive or beneficial. I’m reluctant to start challenging my OCD or making myself feel better because I feel so damn tired. The idea of redecorating the house before a tornado strikes feels pointless so to speak. I’m just waiting for my tornado – and a tornado will always, always come – in a run-down shack instead of enjoying whatever time I have left in a cozy cottage so to speak.

A Great Day Until I Found Gristle In A Chicken McNugget

TW: Don’t read if you have anxiety surrounding food and it’s texture.

Dear Diary,

I had a great day at work today. It was genuinely really enjoyable and happy and I was in a fantastic mood until I went to McDonald’s afterwards to get some food.

I ordered what I’ve been ordering for ages: coke, fries and 9 McNuggets and things were going great. I was munching on them on the drive back until suddenly I felt something in my McNugget. It was hard and tough and I knew almost immediately what it was. I convinced myself that it was something else until I took another bite and found an even bigger bit of gristle.

Spitting it out into my takeaway bag I finished my meal with a deeply uncomfortable feeling in my stomach.

The thought of the gristle caused me to panic. Most people get upset when they find something less than desirable in their food but call it autism, OCD or something else, I was really upset.

So upset, that I feel like I can’t go to McDonald’s ever again because the thought of another McNugget having gristle in it is really upsetting for me.

What I need to do is sleep and not obsess about gristle or McNuggets and right now that’s what I’m going to do – sleep and have a lie in.

Stay safe.

-Medusa

Intrusive Thoughts To Do With Greed + Food OCD

Food and me have a complicated history. I’ve always been a big eater and have always enjoyed eating take-outs, at cafes or at resteraunts with my family. Despite how much I’ve loved food, it’s also been a large part of my OCD.

Throughout my childhood certain food was viewed by my OCD as ‘contaminated’. Not by germs ( although ‘germs’ was the terminology I used to use to describe the thing that was ‘contaminated’; a word later added to my language.) or an actual founded in reality, albiat very unlikely concern such as it having some sort of disease; my ‘contamination’ was different.

It was the grease from a bagel, the tomato ketchup from my brother’s hotdog, the slight possibility of a crumb from a sausage roll falling on my scarf when I’m on holiday to Centre Parcs e.t.c.

The thing that was different about my OCD as my phycologist pointed out later was that when I felt like the food had ‘contaminated’ me, I was never in fear of consequences like a loved one dying or getting sick from the food – the typical OCD fears that would fuel the compulsion ( or at least the typical line of thinking that if I do something or fail to do something, X, Y and Z will happen as a result. )

My OCD has rarely been like that. Don’t get me wrong – my OCD is by no means worse or better than any other person’s is – it’s just different presumably because I’m, well, autistic.

When I got ‘contaminated’ by food or any other thing I deemed undesirable, I was not afraid of something bad happening as a result – It was that I felt wrong and bad. It’s hard to explain the way being ‘contaminated’ feels. It’s not real, ‘contamination’ is a way for me to deal with life – I know. But the feeling is awful.

Something that one of my phycologists once said about my OCD being different to the traditional OCD made me think oneday in my appointment about how upon feeling ‘contaminated’ by apple juice – I searched on Google Images ‘celebrities with apple juice in their hair’.

I wanted ( and still do to a degree ) to be like ‘everyone else’, I looked at these ‘normal girls’ in my real life and celebrities. I looked at the girls in my class and on the TV, who I could never quite understand and found flaws in myself in ways that were unconventional. The worst part is that even if someone else got  apple juice on them for example – that was okay! They were not ‘contaminated’ because it was only me who got contaminated…

Because at the end of the day my OCD is not about preventing something bad from happening, I think my OCD is about my autism.

So that brings my point to today. I go out and buy spicy chips from the shops, food I buy with my own money that I truly don’t need as I’ve already ate. I eat them and now I feel the familiar feeling of being ‘contaminated’. I feel greedy because I did not need to eat them and I hate myself slightly for being so greedy.

So tonight I showered, giving into my OCD and as I sit here late at night on what would have been a school night had I still been in school ( a transition that my autism is struggling to comprehend – that I’m no longer in high school ) and a plan to hang out with a friend for drinks tomorrow and all I can think about is how those spicy chips made me feel.

But we all know it’s not really about spicy chips. It’s because I have a social event tommorrow and I’m nervous. It’s because I’m realising that I am no longer a child and have new challenges. It’s because I am autistic. I just wish my brain would believe it.

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!💍

Difficult Thoughts

Dear Diary,

Trigger Warning: If you are experiencing dark thoughts please don’t read further.

To give some context; I have an implant placed in my arm to stop my period, which worked up until a few months ago. I’m now going through my monthly cycle once more and all the hormones and emotions of this. (I will be seeing a medical professional soon to fix the implant or to go on the mini-pill.)

Note: I know my family reading this are going to be sad by all this – I personally don’t know why but I’m autistic and sometimes lack emotional understanding – but I don’t want to upset them. But I think it’s important to document the bad things and not just the good.

About a half hour ago; I got really upset. I was feeling insecure and then suddenly I wanted to cease to exist. I jumped to “I want to die” rather quickly in my tired brain and this was not pleasant.

And then the moment passed and I’m sort of okay again. These thoughts occur to me I’m moments of extreme anxiety or sadness. To clarify I never actually harm myself in ANY way before, during or after these thoughts occur.

The problem is that if I’m overtired; extremely stressed; upset or depressed – thoughts like I wish to be dead are inevitably more frequent.

I’m currently on my period and I’m very emotional and hormonal which added onto my exam anxiety and general depression – equals a very mentally vulnerable me.

But these semi-suicidal feelings are always at a moment of frustration and anxiety. And they never have a plan. I hate pain and I don’t really want to die – I just don’t want to live anymore.

It’s weird that I think like this but I’m concerned that I’m going to die of this in the future. It won’t be anytime soon, but maybe in about thirty years – I’m not going to have the energy to fight it anymore – not because I’m ‘old’ but because it’s a long time to deal with OCD and depression.

That being said I’m by no way encouraging other people to have this mindset. This blog post is about things I need to work through and deal with; not things for others to emulate.

If you are experiencing suicidal thoughts please contact The Samaritans : 116 123 free of charge from any landline or mobile.

Note: As I’m editing this I came across an article that basically summed up how I’ve been feeling in a much more clear way. If you have similar feelings to me please go look at this by Hattie Gladwell. https://www.healthline.com/health/depression/suicidal-but-afraid-to-die

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.

First Day Back At School After Lockdown

Dear Diary,

Today I started back at high school. The morning resulted in me being very positive (with a minor dent in my positivity due to catching my appearance in my iPhone camera) and I saw my friend. Additionally I am exempt from wearing a mask – an exemption I ignored until it was stated that we would have to wear our masks in class and I didn’t want to do that, so I got my lanyard out. Things were looking up.

For the first couple hours I happily read in the canteen socially distant from everyone. After a while I had a good conversation with a teacher surrounding a book I was reading. Everything was fine until lunch came and for the first time in many months I was sat down in the freezing cold outside with my best friend eating lunch. Lunch is hard enough on its own with OCD; being cold is unpleasant for anyone; But maintaining a conversation in person that was acceptable, even with a friend, for the first time in months felt like a disaster.

My social skills are at a low. I see my best friend and I say how much I missed them, giving them the latest news and listening to my friend say the same. After that I start rambling about politics, controversial topics and other societal issues because I am incapable of being a seventeen year old girl who is not autistic for five seconds. It reminds me of the time as a child where a friend visited my house and all I wanted to do was plan a book with them despite the fact that we were ten. But I digress, I feel really upset and frustrated with myself.

I want to blame my autism on this. I want to say that the autism made me do it akin to how the devil allegedly corrupts innocent people making them do things they otherwise wouldn’t – but I can’t. I want to blame my autism but I feel like I must blame myself. What’s myself and what’s my autism? Maybe the problem is separating the two.

I don’t Know How to Act

I doubt I’ve ever been sure how to act in conversation. I take on the role of who I think I should be in different circumstances. It never really works of course, there are only so many mannerisms you can copy from people in your life before your real opinions and thoughts are revealed.

Since my diagnosis I’ve noticed that I’m acting the way I think an autistic person should act. Try that for irony? I’m even being autistic about being autistic. These days in a difficult conversation I avoid eye contact, not because I hate it or feel uncomfortable looking people in the eye, but because I feel like people understand that I am uncomfortable. I play with my sleeve and avoid eye contact because when I do this adults who know about my diagnosis (which is most people) understand how I’m feeling. I take on the persona or role of having autism despite the fact that I actually have it. I know that many autistic people dislike making eye contact so I’ve adopted that in taking upon my role.

It makes me feel guilty, like I’m stealing from people but I can’t help it. It’s both subconsious and consious, I didn’t know I was doing it at first but then I noticed it worked. People could understand the obvious signs of distress especially how I usually make good eye contact and would understand that I was feeling stressed or upset.

I’m not good at figuring out what is the right thing to say, do or think. I struggle to understand people’s feelings sometimes and this makes me sad. I get angry with myself for not being able to decipher the correct things to say, do, act or think.

So what can I do? The truth is I’m not sure but right now I’m going to watch some YouTube and distract myself from being angry with myself.

Medusa

The Effect That COVID-19 Has Had On My Therapy/Recovery

Dear Diary,

It’s one o’clock in the morning as I am writing this draft and only one thing is on my mind: I wish I could speak to my psychologist.

I’ve done two or three zoom calls months and months ago which went well, however the real thing is no doubt better for a number of reasons. The first of them being that it’s awkward with internet connection; especially for someone like me whose house is notorious for having dreadful WiFi and secondly, because I would not be comfortable talking about intrusive thoughts over the video call – it would feel weird for me.

My psychologist who I have not seen in at least five months by my own reluctance to zoom- and my previous improvement in dealing with my OCD which also meant less need for appointments- is a child phycologist and guess what? Soon I will no longer be a child.

I was supposed to have more time with my psychologist over the last year. A pandemic was not supposed to happen and intervene in my improvements. I wasn’t supposed to have to grow up without being able to visit my therapist because of a virus. I suppose a lot of people will be feeling like this and I know that I am very lucky in the grand scheme of things – a lot of people have had to cope with a lot worse this past year.

I wish I could make it all go away. I’m feeling exhausted by lack of sleep, guilt, worry and regret. I wish I could give being normal – whatever the hell that means – a go for a day and spot the difference. I wish that I could’ve worked out some of my problems with my psychologist and psychiatrist (who are wonderful doctors and people by the way) during the past year in a world where the pandemic never happened. If wishes were horses.

But I can’t change what has happened. I can only sit here, in my pitch black room after resisting the urge to give in to my OCD. My skin spotty and hair slightly greasy due to the poor dietary choices I’ve been making lately. I can watch the shadows form around the light of my iPhone screen, my Alexa playing the soft sound Distant Thunderstorm in the background and hope that somehow, tomorrow will be better.