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.

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.

Parents and Autism

Dear Diary,

I was never great at communicating with my parents growing up. Call it autism, depression or the fact that I had OCD and my parents had no clue what I meant in my early years when I told them about ‘germs’ – or a culmination of all these things but I truly was rubbish at communicating my feelings.

After I grew up a bit, I understood a lot more about what I thought a family was about; and so I opened up a lot more about how I was feeling and then I also began to rely on my parent’s approval without even realising it. I am so reliant on my parent’s opinions and approval and they don’t understand it. My parents are by no means pushy or try to stifile or undermine mine or anyone else’s opinions but they are human beings with different opinions.

I feel alone in the world when I’m not relying emotionally on my parents because as soon as I realised properly in my autsitc brain that I had parents – I became subtly dependent on their approval. It’s not that I didn’t still yell at my parents, roll my eyes and storm out in a huff – because believe me I did (and still do). It’s more like I have the need to tell them every little thing that goes on in my life because I need to know that what I did was okay. My parents already do so much for me and I don’t think they actually realize how much I appreciate all that they do because I’m not good at communicating it all the time. They make sure that my room is clean, my clothes are ironed and I get driven to work and cooked hot meals without any complaint from them.

The trouble is that they don’t understand how I don’t understand that I need to keep my room clean and that I have to iron and wash clothes and arrange things. In my head I’m only a few years away from not living in my room full-time so the notion of keeping my room clean is pointless. Of course their argument that you could say that about anything is valid but I just don’t feel like it is correct.

One more thing about my parents that I find so frustrating as a young person with autism is the fact that they seldom remember I am autistic at all times. When I do something ‘autistic’ in public like speak much louder because I’m not good at regulating my volume in different places – they treat me like they would any other 18 year old who is being loud and seem to forget I’m autistic. When I talk about something too much they think I’m obsessed and don’t understand that sometimes I’m just trying to process something I like or really don’t.

Here lies my main problem and the reason I need to grow-up. Deep down no matter how much I know in my heart of hearts how much they love me and how much time, money, effort and sacrifice they put into getting me help and making sure that I am ready for adulthood, even with all of that and more; I am angry at them. And at the same time I just want to make them proud.

I am so angry and annoyed that they didn’t realise I had autism sooner. After I was diagnosed my mother said that “Finding out I had autism made everything make sense – it was the missing piece of the puzzle” not in an unkind way but it made me wonder how could you not know? Maybe not that I had autism but that there was something wrong with me when I was unable to touch my toys without washing my hands and brushing my teeth because I had OCD. I obviously didn’t know that I was different but surely they must have. I’m angry that whilst of course I joined CAHMS in primary 6 – my parents didn’t figure out that I was wrong. My mother told me that they thought I was just mature for my age which is why I preffered speaking to the grown-ups on play-dates.

Of course my parents are only human – two humans with three other kids, a morgage, a house and jobs to juggle; and if we are being honest I took up alot of those juggling balls – so it is truly unfair to blame them for not understanding a condition that mainstream media didn’t and still doesn’t understand. It’s also completely unfair to expect two humans to be able to 24/7 be able to deal with the autistic behaviour I do and not be in the slight bit frustrated how I wake them up because I want to talk to them.

It’s also truly unfair to blame them for things that they could not have known. Like my mother’s offhand remark of “Always stand up for yourself” a hallmark quote that she couldn’t have known I’d take literally. A quote that led to S1 me taking on S3/4s girls who were rough and ready because I stood up for myself for a stupid comment that would have saved me alot of friends, tears and pain had I just ignored. Me following her advice from nursery because I didn’t understand about how varied and complex most situations with conflict or drama can be. So why do I still feel angry about it? And why do I now get annoyed when my mother tells me very simple things that I obviously should and shouldn’t do in a situation which makes me feel like an idiot when I have a very recent history of taking the words of a cat poster to heart?

Why do I still feel angry at taking my middle aged Dad’s advice to write my phone number and e-mail down to give to all the girl’s in my new primary class in P6 on my first day only for them all to somehow have lost the bits of paper by the time I started my first term? Why am I annoyed that my Dad still has no clue about what a lot of my conditions actually are?

Why do I feel so upset that as a 18 year old woman I have just literally asked my Mum if it’s ‘okay’ to go to a nightclub with my colleagues. Not is it okay on a specific night because we have plans – but is it okay at all.

It’s not all bad though, my Mum disagreed with something I did recently – not in a nasty way but a simple “wouldn’t have done that myself” kind of way. I obviously don’t agree with her as I believe I did the right thing in the situation but her critisism did make me think about certain consequences of doing similar things again which is without a doubt a good thing. So I made some progress really today. I acknowleged my mother’s reasonable advice, respected myself for making the choice that I made and moved on. I think this mindset is the place I need to be at. I need to be Miss Independent but able to accept my parents opinions and advice without ignoring it or treating it as gospel truth.

I don’t think they’ll read this post as I’m obviously not going to directly message them about it but if they do read it they should know that I’m obviously not trying to upset them, nor trying to make them feel like bad parents, people or anything like that. They are fantastic people and parents – I am simply unable to verbally communicate some of this to them.

Take care of yourselves.

Medusa.

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.

University Decision: Pre-Making the choice

Dear Diary,

The time is here – well a mere matter of hours away – for me to decide where I want to go to university and what course I want to take.

There are a few things for me to consider in the next short while. There are things to consider about both my capabilities my dreams and what the hell I want to do with the rest of my life.

I’m an insecure eighteen year old with autism and mental health problems; trapped in the mindspace of a primary one girl, who longs to be accepted and liked by the other kids in the playground. A girl who can’t understand why people don’t like her. I’m someone who lacks confiction in her decisions without letting on to the fact. I’m someone who still struggles to understand how she could possibly be autistic one day and on another day can’t touch her belongings because her OCD is too bad.

This is why I’m scared. I’m scared that I’m going to end up miserable in two ways:

Reason 1: I’m scared that by picking one choice I will be passing up on an opportunity I have always wanted and may never get again. I’m terrified that I am choosing based on fear of the unknown. That I’m using any excuse to not take a leap of faith and do something I’ve wanted to do since I was little. I’m afraid that I’ll end up filled with regret and anger at myself.

Reason 2: I’m scared that if I pick something and take a leap of faith it won’t work and I’ll be disheartened, sad and crushed. I’m scared that I’ll not be able to manage the course either by being not good enough at the course or by having a mental breakdown, or by both. I’m scared that I’ll miss an opportunity to discover what I want to do by rushing into an idea that could make or break me. I could take my time and see, try something and then if I can do it – move on to my dream course (if it remains that).

I’m so scared of regret, I have enough of it from my years of letting my OCD control my life and I don’t want to add to it. But whatever I do regret is always a risk.

I need to spend the next few hours thinking. Will post after I make my choice.

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.

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.

Feeling Bad

Dear Diary,

Things feel for lack of a better word – weird. My OCD is not great and my depression is suffering right now. I don’t feel right and I don’t know why.

I feel like I’m drowning in uncertainty. I feel like I can’t breath and like any second I’m going to crumble into a billion pieces. My mind feels frazzled due to the OCD and anxiety and I don’t know how to make myself feel better.

I feel almost lost for words. The feeling I feel is that of constant anticipation for something bad to happen despite nothing suggesting that this is true. Maybe it’s the post-lockdown worry, maybe it’s that I’ve got school tomorrow or maybe it’s another thing entirely; the problem is that it sucks.

I’m refusing to make an effort in my appearance. I’m finding it hard to find the willpower to brush my hair and feel no motivation in making myself look nice which for a teenager is difficult to deal with.

Contamination is there but not the worst OCD-related thing that I’ve been struggling with. My main problem is avoidance – I’ve been avoiding touching my scrapbook, my jewellery and certain belongings.

I just want a magic wand to be waved curing me of all my problems. It’s really hard to give a damn about anything right now. When breathing feels like an anticipatory move for an unseen threat coming from my own mind – it’s difficult to do anything except play video games and hope that I’ll wake up the next day feeling better.

I fear my mind is going to break and that I’m going to be sent down a path of anxiety and depression that I’ll never get out of. This of course is nonsense – no emotion can last forever but it’s a fear nonetheless. I suppose that’s common for fears though, they tend to be semi-unrealistic.

It’s late now so I’m going to go and brush my teeth and get some rest. I have no clue how I feel about school tomorrow, but that’s the beauty of autism isn’t it?

Medusa.