This Is Getting Out Of Hand

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When I started this blog, I wanted to reach out and connect to people like me, but also those not like me. I just want everyone to be able to at least try and understand everyone else…

But what started as a something I wanted to do to reach out and help others, has turned out to be my emotional crutch.

I never thought that it would be this cathartic, but it is. So that is why I come here today, with an update of sorts.

If you’ve read my recent posts, you’ll know that I’ve been dealing with some pretty severe discrimination, and that it’s been affecting my mental and physical health. But now, this has progressed.

PTSD. 

That is what I’ve having to be treated for.

I’ve always thought as it as a soldiers disorder. I never would have considered that this whole situation is having a comparable effect on my mental health as a first hand experience of warfare. In some ways, I feel bad. Guilty even.

I don’t deserve to even say that I’ve suffering from PTSD. What our soldiers do, what they go through? That is so so much more horrifying than my run in with some staff and students.

It makes me doubt my strength as a person to be honest.

At the beginning of this year, I started to have my self confidence really stabilise for the first time in my life. I felt like I was strong for getting through what I had, and that even though the memories themselves weren’t pleasant, I was trialed through fire, so to speak. And I came out burned, but alive.

But now, I doubt that. 

I am not strong, not if this can break me. I could never go to war and keep my sanity, not if this is all it take to tear me down.

But then, part of me is screaming that this whole situation isn’t just some ‘incident’, it’s so much more to me. It has me questioning my place in this world, the effort I put in, especially if this is what I get. The point of the pain, of the trying so hard everyday just to be. And to all the questions I have few answers…but the one answer that keeps cropping up is to simply…give up.

I’m getting help for those thoughts, back to receiving therapy. Back to analysing my every thought, my every feeling, just to try and control them. Who decided that CBT was good for Aspie’s anyway? You ask me something scientific and mathematical, like how to design the perfect experiment for a nice neat three by two ANOVA analysis, and I’m in my element. Ask me what I’m feeling and I what thoughts came with that, and I’m dumbstruck.

I don’t know if I’ve ever felt so helpless. I’ve done this all before. I’ve been here before.

And despite all my intervention, despite my continuous effort, not only do I feel just as bad, I feel worse. 

What’s the frickin’ point!

I can’t walk properly anymore, my hair is falling out in clumps. I can’t go long without collapsing from stress. My heart rate is constantly over 100bpm, I feel tired and depressed all the time. And peaking through that is crippling anxiety that I can never control, just wait out.

I don’t want to. I don’t want to keep doing this. What kind of life is this? I’ve tried to change it, will all my heart…and I’ve only ended up in a worse place.

Why? Why are people like this?

I can’t think for all the aching and pain in my chest, I can’t. I don’t want to. Not anymore.

But I have to…

No one else can go through this. If this can happen to me, after all the intervention and techniques I’ve had taught to me, then I dread the day someone who hasn’t, who is less equipped, has to deal with this. Hopefully they won’t have to, not when I’ve had my say.

This is not okay. This is never okay. 

Discrimination will stop, and I will do my bit, even if it kills me.

Until next time,

Sasha x

The Dirty Underbelly of Discrimination.

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In the past, until they proved otherwise, I would never give anyone my respect. But I would, however, give them the benefit of the doubt; I would assume that they were a good person, even if their immediate behaviour or words seemed to insinuate otherwise.

I wish I never had. I wish I’d stuck to my gut instinct and waited for people to prove their good nature. But that was ‘bad’ of me, it was ‘harsh’ for me to make people do that. And now I am here, taken advantage of and, for the first time in my life, feeling like the ‘vulnerable adult’ I’ve been labeled as.

Never have I ever liked to think of myself as disabled; yes, some parts of having an ASD, as well as other health conditions, can be disabling…but I never really thought I was disabled, not in the sense that I was defective. I saw myself a different, but never ‘wrong’. And now I have an overwhelming urge to hide myself from the world and everyone in it. My trust has been shaken even in those that I have no reason to doubt, and I feel horrible. I hate myself for feeling like I can’t trust them when they’ve done nothing wrong, but the actions of a few have me doubting my presence in their world. Because that’s what it is, after all.

Yes, it’s likely that a neurologically diverse individual fathomed the constructs on which our society is based, but it is the neurotypicals that run this society in their masses. And I have never felt so vulnerable and out of place as I do now.

I feel lesser, I feel my worth is diminished to them. 

I’m not a cryer, but then again I’ve never had an issue that I’m upset over that doesn’t have a logical solution. Now I’m faced with people that hold strong their opinions against those different to them, and they will not listen to reason. I’ve cried almost every day this last week…initially, I had no idea what was happening, but then my frustration at the whole situation became apparent and I realised crying was a release for feeling so helplessly trapped.

Doubt over who I am and what I stand for have ravaged me into not sleeping at all for the last 5 days, going on 6. I can close my eyes, but I do not sleep, I think and think and think. Rumination has always been a bad habit of mine, but there is nothing else I can do. Not that I can think my way through this situation. It’s not logical. They are not logical.

Thoughts have surfaced about the point of all of this, why put myself through this to fit into a world that doesn’t want me in it. And for the longest time, pushing myself into the world has been my way of reminding myself I will never be like them, the neurotypicals.

Now, I’m just tired or trying so hard…only to have it amount to nothing. No. Worse than nothing, it has amounted in my losing my self-worth, my reputation, my health, my life.

I don’t see an end to this. I don’t see this getting better.

I’m feeling worse. The more it drags out, the more meetings that take place…all of it contributing to the continuous deterioration of my mental and physical health, the lapse in my studies. I don’t know how much longer I can hold out. I don’t feel like I have anything to hold onto as it is.

But then I can take a step back and breath. In for 7 and out for 7.

I have done nothing wrong.

Why should I feel this way when I’ve done nothing but be considerate and accommodating. When I’ve tried everything in my power to make others happy and at home, and not because I want anything out of it (like certain pertaining individuals). No, I don’t want appreciation, but I also do not want this all thrown back in my face and to be futile.

I’ve suffered for 5 months, but no more.

 Until next time,

Sasha x

 

Its Been a While

Hello interweb! Long time no type!

It’s silly really; I’ve been feeling all kinds of awful, and avoided the only real support network I have that lives through this kind of thing too. Silly. Very silly.

I don’t know what made me do something so stupid, usually my decisions are thought through and reasoned…but not recently. I’ve just been going on gut instinct, and if I don’t want to do something, I won’t.

That’s silly as well, I’ve worked hard to get out of my stubborn habits, and I don’t really want to regress at all. But at the same time, I’m wondering what on earth is the point in even bothering anymore?

Disclaimer here: I’m in a not so great place at the moment, and if you think reading about that is going to somehow detriment you and your own well-being, please do click away now, they’ll be other posts and nothing I have to write is going to be groundbreaking, honestly…I’d rather everyone be happy and safe ^-^

The complaint I filed through the university came back a week or so ago, and the result was pathetic to say the least. None of the falsified information has been retracted, or even apologised for being said in the first place. None of the discriminatory behaviour had been reprimanded or even acknowledged. My health deterioration due to the whole ordeal doesn’t even seem to matter as they don’t seem to think it’s sizable enough. What do they want me to do? Die?

Is that what it would take for anyone to see how much this is taking out of me?

I don’t know how much longer I can personally hold out, both emotionally and physically. I’m collapsing about every other day now, and my speech will become robotic and stiff once a day on average. It feels like my body is shutting down on me…and I can’t blame it really.

None of this makes any sense to me, and I don’t know if I have the strength to do what I need to, what I want to.

If they won’t acknowledge they’ve done something wrong, then I’ll find someone who will, and this time it won’t be internal, it won’t involve the university itself. It would involve the law.

can’t have this happen to someone else, I just can’t. But in order for that to happen, I have to face that this isn’t going to end yet, that I have to keep feeling this way, that I can’t just run and hide from it.

The university has offered the next stage to the complaint process, which is meant to be if you weren’t satisfied with the initial ruling of your complaint (which I’m obviously not)…but I don’t know if there’s any point in bothering with it, not if they’re just going to try and cover their own bums again.

trusted them. I trusted them to sort this, I put all my faith into their ability to at least ease the problem, but it’s just gotten worse. They’re meant to be here to safeguard me, to support me…and if anything they’re the ones inducing these thoughts and feelings which terrify me. Why am I even considering things so dark? I know there are things to live for. I know there are better things to come. I know I want to be there for them.

But the prospect of having to sustain this state, this state of so much emotional turmoil is…practically unbearable.

For now, I’m pretty much trying to suppress it as much as possible, but I can feel it lingering there, like an elephant pressing on my chest and shoulders, like a cloudy fog in my head. It takes so much effort just to move, to type even…

This is all so stupid.

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Sasha x

Slumpity Slump Slum

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I have so many drafts for posts guys, so many. But I can’t for the life of me finish any of them.

It’s like the topics are too heavy, too emotionally draining to get out. But I think I need to get them out, so that they aren’t so substantial to me anymore. It’s a stupid vicious cycle and I hate it.

What would usually take me 2 hours to complete (work-wise) is taking me 20. What would usually be uncomfortable but manageable, is now so overwhelmingly stressful that I feel like I can’t deal with it, or anything else, ever again. This is all so unproductive and it’s come at the most inopportune time (slog of essays and reports due in, followed by exam season), which just adds to the stress.

I don’t know, I just feel like I’m stuck. 

Without going into too much detail, the situation at University has escalated beyond belief. Now, not only are students being discriminatory and abusive towards me, but so are the staff. It’s horrible, it’s all horrible. My mum has been in contact with social services, and the council who have each have a really nice lady assigned to me from their safeguarding vulnerable adults division. They’re appalled, quite frankly. As is my GP, and all other professionals in every area of my life; this including my lecturers and tutors.

580251I know you can teach or inform everyone. I know you can’t expect people to change. But at the very least, I do expect for those carrying out illegal actions to be removed, especially if said person is a member of staff dutied with looking after student welfare.

This staff member has never met me, and yet has sent out slanderous emails about me to everyone else in my flat, as well as departments (without having me copied in at all), stating I’ve done things that I haven’t, that I’ve threatened and stabbed, stabbed! He even said the University was working with me to ‘fix’ these ‘issues’! They don’t exist, completely fabricated and falsified! I’ve never been spoken too about these supposed allegations, nor have any other flat mates I assume as they would verify that 1) I wouldn’t hurt a fly, and 2) the only thing on the list that happened was carried out my an aggressive alcoholic who has since left the flat.

This staff member is meant to be able to look after, not only me, but all the other students in his designated area. But every time I’ve had the paramedics called out –5 times in the last 3 weeks– he’s hightailed it out of there.

Friends I only met this last year had to deal with me being unconscious and unresponsive when they find me, me screaming why I get one of my stress induced pain cycles. They have to call 999, campus security to open the gates for the ambulance, my parents,  they shouldn’t have to do that! All of them are ill and stressed and showing symptoms of either chronic stress, anxiety, or depression, and it’s all because those in place who are meant to care for the welfare of the students are completely inept!

200 (10)These lovely people, these friends I’ve met, they shouldn’t have had to scramble to find my medication for the paramedics, or try and remember my conditions which were mentioned in passing. The welfare team should do this, it should never be left to 18 year olds who have no first aid training, let alone any kind of duty to take on such a task.

 

The first time I collapsed, I didn’t respond for almost 50 minutes. The paramedics said it was unlikely that I would have at all if I had been left any longer.

I could be dead. 

Let’s just let that sink in for a second. If those lovely friends had left me in the care of the welfare staff, as they should be able to, I wouldn’t be alive right now. It is to them that I owe my life.

The welfare team are meant to be able to support students whilst they are away from home and studying at university. They should know the medical history of ‘at risk’ students, which I am as I am in an adapted room and have been noted on register as needing assistance and support, as well as being within the disability advisory service run by the university. I should be safe to study, and if the event arises that I need emergency assistance, the welfare team should know my medical history, medication, triggers, etcetera. In practice, they didn’t even bother to check on me when I fled a flat meeting clearly distressed, and didn’t bother showing up when notified about my state, nor when the ambulance came (which the welfare team is immediately informed about).

And this was just the first time! There have since been more instances than I can count on both hands that this has again happened. Each time it’s handled worse and worse. So many things have been said and done that are just wrong. I have pages and pages of it jotted down so that I have a log of it. So many pages.

5 weeks later, and nothing has been done. Nothing is sorted out. If anything, it’s worse. 

I don’t know if I have faith anymore in the system we have in place, and the faith I had previous to all of this was tenuous at best. I don’t feel safe at University at all right now, and am staying as home despite paying for my accommodation anyway.

‘Communicating over the computer is cowardly, people say things they would never say in person. If you can’t communicate face to face, you will never succeed in this life. You need to be able to pick up on the social cues, the body language, facial expressions-’ Welfare Officer/Warden

Should someone, who says something like this, really be responsible for the welfare of not only those with disabilities, but also those without? I think not.

The whole reason I chose the university I am studying at is that it’s pastoral care was said to be far superior than any of my other options, and academically it is in the top 1% of universities in the world. I can’t help but feel somewhat disappointed.

Hopefully things will get better, I don’t know what I’ll do if they don’t. I need to get out of this slump ASAHP (as soon as humanely possible).

I hope you are all well, and if not, hang in there,

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Sasha x

 

 

 

Discrimination. This must stop. 

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Ruelle – Game of Survival

I don’t think I’ve ever felt so down in my life. Note: ‘Down’ is my safer word for depression by the way, and will be used here on out as a synonym of sorts.

Last year (my first year of Uni) was the first time I really tried to make friends without consistently monitoring and planning my every interaction. This did not go well. I ended up not leaving my room for days at a time, eating from my room (to avoid the shared kitchen) and running in and out of my room for lectures and meetings-if I went at all.

So this new academic year, I wanted to try this again. I identified that last year I didn’t give any information to my fellow flatmates, I just said that I can be anxious and a little socially awkward. That was to save me feeling uncomfortable, to save me from feeling vulnerable and unguarded. This year I though it best to shove these feelings aside, and be completely open and honest. So I did this from day one. 

The first night, I collapsed and paramedics had to be called out. 

The girl that had stayed in the flat with me rather than going out had the next day complained about having to ‘look after me’, saying that she felt ‘regret’ over not having her evening out, that is was ‘unfair’.

After this, I made a resolution to be utterly self-sufficient. 

At first it started maybe a week or two in, I thought they may just be getting stressed now that work was coming in and freshers week was over. A snear when I flapped my hands, a scoff when my words sounded odd to them… I let it slide. I shouldn’t have, but I was so desperate to keep the friends I had, that I didn’t want to kick up a fuss with others in the flat and have those friends think ‘oh, she isn’t that nice after all, its only a matter of time until she becomes mean to us’.

It was stupid to accept less than I deserve, but that’s what I did, and continued to do for 5 months.

Honestly there is so much that has gone on, but I will share what I can bring myself to get into words in a  separate post, the rest I shall ruminate over until the incidents are a little less raw. But right now I shall share how this progressed, and the resultant impact this has had on me.

  • Background-wise, I have a ungodly plethora of ailments. My flatmates were informed of this by me at the beginning of the academic year, even though it pushed me too far (what with so many strangers, extended communication, and having to share so much personal information) and made me collapse.
    • So they were explicitly aware not only of my conditions, but also the details of them which I also gave (I didn’t want to assume they would bother to look anything up, it was best to give them the information they needed to know).
    • Obviously things came up that I had forgotten to fill them in about, but one of my close friends in the flat would always offer to bring this to the attention of the others, which I was grateful for as work was constant at this point and I was stressed as it was, let alone having to spill my guts all over again, explain/justify why I hadn’t mentioned this earlier, and answer any questions.
  • Progressively their inconsiderate actions seemed less and less careless, and a little more intentional. I’m not saying that any of them sat and planned ways to make uni difficult for me, but they definitely knew what they were doing and the impact their actions and words were having on me.
  • what ensued over the last 5 months (the very words I presented to the halls warden);
    • Severe head pains to rear of skull, usually (but not always) requiring me to sit down in case I pass out from the pain. If I do not pass out I will be lightheaded and unsteady, sometimes even physically sick from pain. 1-2/day
    • I have Vaso vagal, so I will have fainting episodes under any kind of stress (too cold, too hot, too stressed etc) and recently I have been passing out regularly, and having less warning when its going to happen. I may not be picking up on the signs though just due to my own exhaustion and inability to focus through my anxiety. 2-3/day
    • Something that began to get gradually worse over my time at university is my lack of proprioceptive feedback, meaning I can’t feel my limbs or know where they are unless I look at them. This comes at times of residual stress, and is worsened by lack of sleep, anxiety, and low mood. Due to this I fall over regularly, and almost daily require the use of my crutches at some point. 3-4/day
    • Panic attacks grip me before I even get out of bed (I’ll usually need 1.5hours to get out of bed because two panic attacks have to ensue and subside before I can move without my chest becoming painful) and then throughout the day, especially when I have many things to do or I come into contact with people that are not understanding. 4-15/day
    • I have an uncommon combination of Asperger’s Syndrome paired with the addition of the sensitivities to sensory stimuli of traditional autism. As such noises, smells, and contact (I control what I eat and see) is extremely provocative of all of the above issues, but at the very least will send me into sensory overload. 3-6/day
      • I assume this may be the equivalent of a Neurotypical/NT (having an ASD I am neurodiverse or neuroatypical, meaning my neurologiy from birth is different to the majority of the population. In short, I’m wired differently) turning on 20 different tv channels at once, having multiple radios playing separate stations, and someone else hitting pots and pans together in no predictable pattern. I’m not very good at explaining my issues to others, so hopefully the example helped.
      • Further example: A knock on my door will should like thunder, as in it will make me jump and my chest tighten, even make my ears resonate.
    • Due to the stress I’m under I’m forgetting to eat and drink, sometimes though I know I should but I just can’t bring myself to leave my room, or even move. Up to 3/day
    • I have been unable to sleep for more than 2-4 hours a night for just over two weeks now. I would periodically have this last term, but never constantly as it is now. Partially this is due to stress, but noise and disruption at ungodly hours of the morning also play a part. 7 nights a week
    • I do not sleep, and work myself continuously so that I do not become preoccupied with my own anxiety and sadness. Obviously this runs me down, and thus I am more susceptible to all of the above.
    • I have been unable to leave my room for lectures, listening at the door and looking at the peep holes worried I’ll see one of the people that aren’t very nice or understanding – I’ve tried to climb out my windows, but that doesn’t work. In the end I wait for one of my friends in the flat to come and get me after I have asked if they can and are free. I did however go to my double today as my disability adviser and my counselor have arranged for me to be able to go in late if needs be. This means even if I do panic, I can still go.
    • My chest is now continually tight, despite my exercises for my breathing, meditation, yoga, and having a steroid inhaler I take regularly. This is particularly worrying as I am doing all I can on my end. Also, my MRI/neurobiology is fine, the stress responses I’m getting are not due to a malfunction in those areas, thus my situation must be changed/stressers removed.
    • My mood is worryingly low, lower than the time during sixth form when my depression was well into the clinical ranges. Again, none of my techniques are working (and I have plenty, I’ve been in therapy since I was ~11 years old for anxiety and depression).
    • I feel unsafe and alone. Despite having friends in the flat, it doesn’t take away that I feel scrutinized and looked down upon. I feel like a pest, an inconvenience. This is only solidified by the behaviour I receive. I disclosed my disability so that those living with me would be understanding, not to have them use it against me or throw it back in my face
    • Largely, I also feel unsupported, scared, trapped and confused.

And now, when everything was getting too much, when I could barely get out of bed, wasn’t eating or sleeping, not able to drink or think or work…I said something. My friends were so understanding, and I actually felt silly for not saying anything. I thought that as they were so considerate, it was likely this could just be sorted among ourselves; no need to fill my parents or counselor in on the goings on.

I was wrong.

They responded violently, both verbally and emotionally. The manipulation and what I now realise was blatant discrimination became harsh and more direct. The worst part is the halls warden got involved, and was probably just as bad as the students.

If you are being discriminated against, know that you do not deserve it. That if it feels wrong then it probably is, and that there is so much help and support out there that you never have to feel like you’re facing it all alone. Never accept less than you deserve my friends, never. 

Pertinent links:

 

Details of the incidents themselves will be in the next post.

Hope you’re all having a wonderful day,

Sasha x

Award? Me?

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The Rules:

  1. Thank the blogger who nominated you and provide a link to their blog.
  2. Write a post to show your award.
  3. Give a brief story of how you blog started.
  4. Give two pieces of advice to new bloggers.
  5. Select 15 other bloggers for this award.
  6. Comment on each blog to let them know you’ve nominated them and a link to the post you created.

 

Just as I was doubting the value of my contributions to this community, I get nominated by the lovely devereaux frazier (aka Laina) for the Blogger recognition award!

Laina is the wonderful author of the blog The Silent Wave, by the way, which covers any and all things Aspie related if you want to go have a nosey (I highly recommend you do!).

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I haven’t been blogging long,only since November 2016, but I considerably underestimated that amount of reassurance and peace it would bring me.

Initially, I was of the mind set that where this blog would offer me a sense of catharsis, it wouldn’t overtly affect my day to day life; it would remain enclosed on my little corner of the inter web, never to seep into or affect my outer self or my actions.

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©2016 Disney•Pixar. All Rights Reserved.

In some ways this is true, I don’t go around all hunky dory now just because I started a blog…but similarly, it has become something of a confidant.

<- not me.

This probably isn’t making much sense, so let me explain. My initial reason for starting a blog was primarily to help others understand the aspie point of view, but not just any aspie point of view. Mine. In the words of  Stephen Shore;

“If you’ve met one person with autism…you’ve met one person with autism.” 

So where I knew my own experiences wouldn’t be directly applicable to anyone else, they would give an insight into one of the many facets of living with (and maybe even around) ASD; which I deemed valuable.

What I did not account for was my reaction to the blog itself. I knew it may help others, but it was never intended to help me. But now I find myself, fumbling through University life (currently very sad and rather scared) and the first thing on my mind is to write a post about it. My mind is screaming to just get it down and out of my head, all the issues going on, all the worries.

I actually haven’t posted what has gotten me in such a state because I was debating whether that would really suit the blog content. This is to help other people, not my own personal online diary/agony aunt session.

Irregardless, in the short space of time in which I have run this blog, I am thankful that I do. I’m thankful I took the plunge and put myself out there, even if I feel like a goldfish just waiting to be tapped at and antagonized (as of yet this has not happened, everyone is lovely!).

 

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So my tips for new bloggers;

  1. Just do it! (please don’t prosecute me Nike) Just write write write.Honestly, coming from a fellow newbie, even if you don’t know where it’s going, the journey can be therapeutic all on its own.
  2. Reach out. The community is warm and welcoming, and even though I struggle with this myself, there are tonnes of people to get into contact with, even if it’s indirectly. Follow, comment, you don’t have to message them for one-to-one conversation, just let them know you’re there, and you’re listening.

Now this is going to sound terrible (at least it would to a neurotypical) but I don’t know 15 other bloggers on here. I mean I could just search some up and bung them in, but I don’t want to do that and it’s dishonest, so, no. I will put in those who I follow and appreciate because its my honest opinion. And they are as follows;

  1. Anna from Anonymously Autistic – wonderful and honest blog
  2. Laina from The Silent Wave – Duh, how could I not include you? 😂
  3. Zack from Zack Mayo’s Blog – Gotta love a bit of computer science
  4. Russ from Nomadruss – Wonderful nature photography

Thanks again Laina!

I hope everyone is having a lovely day! Chins up 😘

Sasha x

 

 

Results

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They came in. The results of the winter exams.

Remember I said I’d thought they’d gone alright? Well, here’s how that panned out…

I’m checking my university email before bed, when a new one comes in, followed by four more. I blink at the screen, tired and not really seeing it properly. But then the word’s ‘scores’ and ‘up now’ jump out at me, and I feel my chest clench.

Seconds later my thumb is drumming in the url to get to my marks, all the while my brow so furrowed that I feel a migraine beginning to brew.

It’s a convoluted process, going into each module individually and having to access the documents with contain our student numbers and corresponding scores; naturally, they aren’t in numerical order. I can’t ctrl+f the documents either as I’m on my phone, so I scroll through the 8 pages of jumbled numbers with painstaking precision.

I locate my number.

At first I’m sure that I’ve jumped a line as I’ve scrolled to the right, but then as I zoom out to see my student number and score on the screen at the same time, I realise that I haven’t. My stomach tightens and twists, and I swallow thickly before locking my phone.

It’s only seconds later when I grab it back up again to check the marks of my other modules.

Part of me knows this is a stupid time to do this, before bed, when it takes me a considerable amount of time to wind down, and even then my sleep is restless. Causing myself unnecessary stress is pointless. But leaving me without knowledge of all the marks is equally -if not more- anxiety provoking.

All the marks come back similar to my first, and I forcibly chuck my phone aside to dash for my ensuite. After about a minute or two, I’m pretty sure my stomach has emptied its entire contents into the toilet bowl. But it doesn’t stop, bile rises up in my throat and dribbles from my mouth, even though I’m trying to clench it shut. My head is pounding and my vision is hazy and doubled in some places. I think I’m sobbing, but I’m not sure. I don’t cry often enough to really know. And even if I did, I have no idea what to do to make my eyeballs stop leaking fluid. It doesn’t serve any purpose, so there is no logical solution that I can come to.

I stand, albeit shakily, and flush the toilet. After cleaning it and all nearby areas (just in case) I drag my numb and poorly responding body into the shower, flopping down onto my disability seat that’s there.

I’m not sure how long I sat there, but I didn’t realise for a while that the water was too cold. My fingers, toes, and joints were all tinged blue. I turned the temperature up. Twenty minutes pass before I finally wash myself and get out of the water. It had been too hot. My skin had reacted.

Covered in burning and itching lumps (courtesy of my urticaria and angioedema), I make my way back to bed. My eyes painful, my head pulsing, my stomach aching, and my throat raw. Picking up my phone from where I had discarded it, I check my last mark. It’s an 84%.

I text my mum, not wanting to wake my boyfriend even though we have a skype call on for this very purpose, for the event that I’m panicking and/or about to have a meltdown. She replies within seconds, and part of me is wishing she doesn’t ask me what’s wrong, and the other half needs her to ask so I can unload this all, have someone rationalise it to me.

It may have been mothers intuition, or it could be the fact that I’d texted her in the early hours of the morning. But she knew. I tell her I got my marks back, that they weren’t good. She doesn’t reply. She calls.

The tired aspie in me doesn’t feel like talking, I don’t even feel like being. I just want to curl up under the covers and try to not think, to not feel. But I answer, just to spite myself.

We talk for a while. I let slip that the real reason I’m upset is that without my intelligence I’m just weird. Weird and intelligent (in my mind) = eccentric, maybe even endearingly so. But without my intelligence, I’m just irritating and weird. There’s no use for me.

I won’t go into too much detail, but essentially we determined that I was putting too much pressure on myself. Every waking hour (some of which I really should have been sleeping or eating) of last term I was working, and on the weekly tests I would get 75-100% on everything, I didn’t even drop below 100% in one of my modules, not once.

By the time exams rolled around I wasn’t really all there. Mentally and physically I was exhausted. From trying to socialise to compensating for the stress of said socialising by insisting I do better and better on my work….it just became more than I could get my head around. So I numbly read through my notes, knowing them word for word, understanding every concept to the point where I was reiterating it in many different phrasings, switching to Spanish, then back to English. And then I hobbled along to my exams, my legs no longer giving me any feedback, much like my brain.

Vaguely I remember having the words morph on the page, creating patterns and pictures unless I really focused on them. When I did focus, the wording was ambiguous and difficult to interpret. But I remember finishing them all, not caring at the time that I’d just sat an exam in a state much akin to a 5 month old zombie. I just wanted to be able to sleep, to just be without having something looming over me.

And the worse part?

In these exams I’ve gotten a high 2:1.

2:1.

That is not a bad grade. That is a grade most aspire towards. But in my head, I saw scores nowhere near 95 and went into full on freak out.  So I didn’t do badly, I didn’t even do okay or average, I did well. And yet I worked myself up into such a state that it felt like the world was ending, that my life had nowhere to go from that point on. Honestly? I was already thinking about what I could do instead which would support me sufficiently in this economic market, what with the housing prices and competition for jobs. How silly is that? (this question is rhetorical, please do not answer, I know it is silly).

I watched X+Y over Christmas. It’s a film on Netflix that depicts two boys with ASDs. I hadn’t thought about it until now, but when I was watching it I had been thinking ‘I would never put so much pressure on myself that I would become that stressed and unhappy’, turns out I was wrong. I didn’t even realise it. But that’s what I was doing.

I guess the moral of the story is to keep a check on yourself, little by little you may be inching your way towards a state of mind that isn’t healthy; one that, with perspective, you would never venture towards intentionally.

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For helpful links on stress, anxiety and depression see my blog post here

If you want to know how to help and aspie or identify that they’re stressed check my post here

Both have links at the bottom to helpful sites.

I hope everyone has a wonderful day,

Sasha x

Spring Term Stress

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Uni started again this Monday gone, and to say I have mixed feelings would be an understatement.

But ambivalence aside, I’m keeping on top of my work and I feel a lot less stressed doing it-in comparison to my stress levels just before Christmas break. Undoubtedly this will change with time as deadlines converge and pressure mounts, but for the time being, I’m going to mindlessly enjoy the odd lack of stress.

However, I do feel like I’m missing something…like I haven’t fully settled back into Uni again…it just doesn’t feel real, or urgent. Maybe the best way to describe it would be a daze-like state, doing what I need to do, but not really being present for any of it.

Though, however detached I’m feeling, I really do appreciate having my own space again, and all my things with me. My uni room is adapted for disabilities, so I have enough space to hobble around on my crutches if my legs lose proprioception. Plus the adjoined bathroom is a real treat because it has bars all over as well as a wet room(which has a fold down seat!). I have my fridge and food shelf organised in my own way (though I’m pretty sure the shelves are meant for shoes – don’t worry I cleaned them – rather than food), and everything is set up how I like it. The whole setup is just really comfortable.

I’ve been worried about not having a fridge and bathroom in my room next year, as I’m living in a house with some of my friends I made this year. But they’re really nice people, and I don’t mind being a little uncomfortable if it means that I can be around people I’m (for the most part) socially at ease around.

I mean, I don’t know if I can ever truly be 100% uninhibited me, but that’s okay.

Now that I have my driving test passed I don’t really need to go home every weekend, plus I think staying at uni would reduce a lot of the re-settling stress I get every Friday when I return home, and Sunday when I get back to uni. Not only that, I want to really experience Uni properly, now that I have a good set of friends to do that with. I don’t want to go through my whole degree having never been to the laundry room, or going into town on the weekends just for the heck of it.

But that doesn’t mean to say I don’t miss the people at home. I never thought I would, but I do. I feel bad every time I think about my little westie’s face (her name is Boni (short for bonita) and is pronounced ‘bonny’) when I come through the door, it breaks my heart to think she’ll wonder where I am, and it makes it that much worse that I always wish she was with me, keeping me company.

And then I start to miss my parents. It’s not like we have special bonding time or anything when I come home, their routine continues as normal, but just being able to nosey on what they’re up to, or start a conversation, make them a cup of coffee…it’s things like that which I miss.

We’ve arranged for them to visit me for a meal on the weekends I stay, which is really nice. And I’m hoping that this daze I’m in clears as I get more settled (hopefully staying over the weekend will help as well).But for now I just feel like I’m spinning, not out of control, but unable to really grasp at anything.

I hope everyone is having a wonderful new year.

Have a great day, Sasha x

 

 

“But you never said anything…”

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Parachute – Strange World

I thought that getting my diagnosis would mean that everything would get better, that all my problems would just dissipate.

Nothing prepared me for when that didn’t happen.

Everyone was so optimist and positive about the whole diagnostic procedure, it didn’t even occur to me that it would have any downfalls.

At first was just small things. I’d be going to my sessions with my psychologist at the time and found that even though we knew what we were dealing with now, that the therapy was targeted…just knowing didn’t make all my issues disappear. I never understood why my psychiatrist kept asking how I felt about the diagnosis, not at the start anyway. But soon I started to feel helpless, like I’d put all this hope into something and it didn’t deliver.

But I was coping, I was coming to grips with the fact that I’d overinvested. But then my school began to react to my diagnosis.

The Head of my sixth form offhandedly mentioned to my mum that she and the pastoral staff felt I was ‘playing up’ to the diagnosis, ‘acting’ in a certain way which coincided with what my idea of Aspergers was. I remember my stomach sinking. I felt humiliated, I felt ashamed. I thought the diagnosis would mean that school would better understand how to help me, and that I could take some pressure off myself in terms of my facade. I stupidly thoughts that I could now act like myself.

I was wrong. 

The diagnosis wasn’t helping things at school, they didn’t understand any better, if anything, they resisted helping me even more. If they gave me one thing, they’d take away another. For example, I was told teachers wouldn’t spring questions on me in class, so long as I volunteered to answer at least two questions within the hour. But when that was put into place, they revoked the fact that I was allowed to leave class a few minutes early to avoid the crowded corridors (and thus unnecessary physical contact that crowds cause).

I think that’s when I started to sink again, my mood just plummeted. The depression and anxiety reached and then exceeded the clinical levels I’d come into this lot of sessions with, and I had no idea how to proceed. I had the diagnosis, everything was meant to be working out now that we knew.

So I tried everything my psychiatrist gave me to do, I was open and honest, even though it was hard and uncomfortable, even though it left me physically ill and exhausted the days following my sessions. I still did it.

I still went to school, even though I passed out from exhaustion in the car (it would be just before 6am, I had to be in school hours early so that I could ‘settle’ myself). On a max of 2 hours a night, I was a mess. I felt like a zombie, heck, I looked like a zombie.

All my hobbies were dropped, I could barely do anything but lie down. I didn’t even try to think, I just lay there and let my head buzz with the horrid feeling of being overstimulated, pushed past its limits.

My psychiatrist started to talk like we’d finished, I had several sessions left though. I realised either I wasn’t conveying that I still wasn’t okay, or, she had nothing else to offer me. And she was the best they had to offer. I told her I felt like I needed the remaining sessions, that I wasn’t feeling very stable or emotionally strong. But the sessions didn’t offer anything new, nothing I said seemed to really register. And suddenly, this psychiatrist who was the first to really listen, the first to notice that all the anxiety and depression was stemming from something else…she was just like the others before her.

I withdrew, I knew the questionnaires and verbal questions so well that I just lied. And I don’t lie, I can’t, I giggle, really badly. But I didn’t have any emotion at the time, and everything was a lie at that point. I was just going through the motions. Acting. So giving the answers they wanted to hear wasn’t very hard.

Pretending became habit, I learnt to laugh and smile when I was expected to. I memorised god knows how many conversations. I was less myself than before the diagnosis.

Time passed, I went into my final year of sixth form, feeling like I was less myself than when it all started. I took my exams, feeling detached from school altogether, and so alone. The kind of loneliness where I used to whack my fist to my chest to try and ease the ache there. But then I’d just cry, because it wouldn’t ease…not even a little bit.

I got better as new people came into my life, I started to face the state I was in. I started to look at things the way I used to, the way I naturally would…in essence, I stopped pretending to my something I wasn’t. I stopped trying to act like I was neurotypical.

But even now, I don’t always know what I’m feeling, or even what I’m thinking. At least not in the sense that I can put it into words. And without words I can’t communicate my thoughts, least of all my needs.

It’s taken me almost three days of migraines, nausea, lightheadedness and irritability to realise that I’m stressing over something.I still don’t have the slightest clue what though.

My head feels fuzzy at times like this…like sensory overload, without the external stimuli. It’s as if my thoughts and feelings are stimuli enough.

I can’t ever really pinpoint specific feelings or thoughts either. So without the ability to pick out what’s bothering me, I can’t really address it. Even if someone asked, point-blank: ‘What’s worrying you?’ I wouldn’t have anything to say.

In part, I think that’s what makes it all the more overwhelming actually. Not being able to know what’s wrong. How can I help myself, or let anyone help me if I can’t even tell them what’s wrong?

I guess up until this point, I’ve solved my own problems. Not in terms of getting things put in place at school, or making doctors appointments, as that has always been down to my parents (every time I try to communicate I either get into an argument, say something wildly offensive (and not know what) or not get the needed outcome). But in terms of emotional problems, issues with other people, issues with work and productivity, the emotional problems that a Neurotypical would use their support network as a tool to deal with and solve. But when it got to this point, I couldn’t really help myself anymore. The sadness and anxiety was a bigger problem than I could handle, it left no room for the thinking, logical me to take hold. There wasn’t enough energy left to engage my true self.

I still have no idea what I’m doing, and I vehemently wish that I had pushed for the therapy sessions to continue whilst I was still under 18.

I should have never of lied and said I was okay when I wasn’t, when I still needed professional support and help.

Now all I’m left with is some makeshift strategies that don’t really work, but are all I have. And evidently, they aren’t quite cutting it.

So now I clutch at straws, not really knowing what’s wrong, just taking educated guesses based on the events and tasks I have going on at the time. I just feel helpless, powerless even…as if I have no control over anything anymore.

My diagnosis didn’t ‘fix’ me, it didn’t rewire my brain so that I could operate effortlessly in this largely Neurotypical world. But I’d been infected by everyone’s attitudes around me, read too much into them, misinterpreted them to mean my problems would practically disappear.

I’m struggling, more than I’d care to admit. All I know is that I’m absolutely terrible at identifying my own thoughts and feelings, and that this needs to change.

Below are some links that may be useful if you’re feeling something similar.

Have a great day, Sasha x

Important Note:

  • Please seek help if you need it.
  • Learn from my mistakes, don’t lie to your psychiatrist/therapist/counsellor; any help they can offer is better than fumbling through blindly on your own.

 

Winter exams and the stress that comes with them

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There’s nothing like the stress of end of term exams to make you feel like you could actually have a heart attack. In my case, though, it’s usually panic attacks rather than heart attacks.

I didn’t sleep well, didn’t eat well, or drink water for days at a time. I barely managed to get to the exams, actually.

But I took them all, and I daresay that they didn’t go too badly.

The point is, I wasn’t dealing with the situation how I should have. I was stressed to the point where I had triggered proprioceptive issues in my legs. Meaning I wasn’t getting enough sensory feedback to know where they were, so I couldn’t control them very well at all. Mid week I had so little feedback that I couldn’t stand without my legs crumbling beneath me.

I tried techniques to calm myself, to de-stress, but I just couldn’t get out of the mindset of ‘revise, revise, revise’. I was even contemplating if I had enough time to have a sip of water, worried that I would be averting my eyes from my notes for too long a period.

As you’ve probably assumed, I couldn’t keep that level of stress and anxiety up. My mood crashed. I couldn’t get out of bed, I couldn’t make myself move. This is where we swing to the other end of the spectrum. I just didn’t care. I couldn’t even think through all the buzzing in my head, let alone revise. So I didn’t.

Every little thing I was hypersensitive to, making me irritable and unpredictable even to myself. In truth, I don’t remember much of the last few days of term, only that they were daze-like.

The odd thing is, that no-one noticed a difference. Not my friends, not my counsellor, not even my parents. But by this point, I was too overwhelmed to be able to communicate my needs.

With autism, it isn’t always obvious when we’re struggling.

I mean, sure, sometimes it’s like full on WW3, but others, we’ll just come across as normal. Part of me wonders if this is why I’m pretty emotionally self-sufficient, preferring to keep my thoughts and problems to myself, having no one else sort them.

There is a substantial amount of weight removed from your shoulders when you can communicate your needs better. 

After my diagnosis (it was a late one, I was 16) my psychiatrist and I had worked on identifying and communicating my needs, and my relationships with family members drastically improved as a result. My mum took some of the weight off in terms of sorting hospital appointments, doing my washing, helping me choose meals (essentially, any and all everyday tasks that I found overwhelming she advised on). And my dad and I started talking about thoughts, feelings, opinions, all the things that I’d learnt to suppress over the years.

But even now, if I don’t catch myself early enough, I’ll slip into a state where I can’t communicate, where I can’t convey what’s wrong, or what I need.

I guess my point is, that it takes practice and a hell of a lot of uncomfortableness to open up your thoughts and feelings to others, but if you don’t, they can’t understand where you’re coming from.sad-pikachu

You can’t expect people to know and understand your struggles as if by magic, you have to tell them. This is something I still really struggle with, but I’m aware of it now and act to counteract the instinctual anger that appears when someone close to me does something that upsets me.

A few notes to leave on if you are an Aspie;

  • Stress can creep up on you, and it’s a skill all of its own to keep an eye on your stress levels. It’s worth investing time into, though. It prevents uneccessary meltdowns when all that was really needed was early identification and resultatnt intervention.
  • This page can give you a few pointers on what to look out for in terms of stress and sensory overload.
  • If you know (like me) your communication shuts down when you reach a certain point of stress, have a few non-verbal means of communication in place so that you can convey yourself to those closest to you. Maybe a particular emojii you can send, or a coloured piece of card to present to someone.
  • People don’t know what you’re thinking, you have to let them know. Only then can they help you (ie, if they’re doing something to upset you, they won’t know its upsetting you unless you say so, very rarely are your loved ones being mean on purpose).
  • Make sure your equipped to deal with stress when it comes your way. More information here.

A few notes if you know an Aspie;

  • Know the signs of stress and sensory overload (here is a good place to start).
  • Remember that when stressed, sensory stimuli can be particularly triggering to those on the autistic spectrum. For instance, noises that previously were only mildly irritating may cause full on sensory overload if paired with other stimuli. Try to be sensitive to their increased sensitivity.
  • It’s good to have well-established routines and plans for communication when said communication is expected to be difficult (ie, times of stress). Establish these beforehand so that the actual process of communicating isn’t so much of a stressor within itself.
  • Know when it’s time to intervene. I can be hard for those of us on the spectrum to realise when things have gotten out of hand. If you see someone with an ASD in an emotionally precarious state, they might need this bringing to their attention.

If you have any quiries or comments feel free to contact me!

Have a great day, Sasha x