Trying to find balance

Written by Ros her previous blogs have been about anxietykeeping goingbeing ill and capableautism and the question ‘how are you?’, more of her art can be found here.

I am writing this the day it’s supposed to be posted… well to be completely honest a week after it was supposed to be posted (luckily Meg saved the day last week with her excellent post).

If you know me you’re probably thinking that’s normal because I’m a bit of a disorganised mess. I am terrible at responding to messages, committing to plans, I am often doing things last minute, things that should be simple can take me weeks to get round to etc.

I think scatty or eccentric would definitely be words used to describe me, however there is a lot of time and energy that goes into being this disorganised so today I’m going to break some of that down for you with a glimpse into the world of my Autistic brain.

Behind the chaos:

  • Most of my blog posts are very well thought through, re-written multiple times (and in ideal circumstances proof-read at least once).
  • I have a system for how I rank texts and the importance of replying to them; there are multiple variables here and even those on my priority reply to list often get ignored.
  • I attempt to rank ‘daily’ tasks by importance, time and energy.
  • When I make plans there are many factors I consider, I often run them through with another person and my reply will have been thought through (even if its ‘I’ll have to think about it’).
  • Activities I have done before/places I have been have their own score, which intersects with my physical/mental state; I also have a system for judging new things and places based on this.
  • On that note I also have complex social systems which has people in my life placed based on my assessment of our relationship and multiple other factors (this influences my interactions with this person in relation to my current state).

I have often thought about drawing these out but it feels vaguely sociopathic to have physical representations of some of these concepts.

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I use these systems to attempt to organise myself; I have to-do lists dotted around, which try to take these into account. My to-do lists never look that complex and how effective they are is dependent on my mental state but I’m getting better, they can contain things like ‘shower’ (I put my towels on to wash today, if you have an estimate for the last time I washed them you can probably double it and you would still be wrong).

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One of the reasons I need these lists (and also why they fail sometimes) is because often I am at the mercy of my own body/brain. I have come to realise that the greatest of intentions do not mean something will happen; I mean I can’t even clean my teeth twice a day and I keep a toothbrush by my bed.

I have come to see my physical form as a delicate eco structure as unpredictable and irritating as it is beautiful. One moment I can be buzzing with energy, practically bouncing of the walls; another I cannot muster the energy to get up and go to the loo, pick up the glass of water from the bedside table or even adjust to a more comfortable position.

The same is true of my brain, I can have brilliant ideas, be thoroughly engaged and interested in the world, then everything can disappear into nothingness suddenly I find it hard to access simple knowledge or care about engaging with anything/anyone.

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There are many shades of these states and they can interact in the strangest ways (being full of energy yet mentally aware that nothing matters and having no motivation to do anything, is a strange conundrum).

This is what I have to be aware of in the general scope of my life and it’s difficult; understanding my own emotions is not something I am highly skilled at, my concept of time is extremely fucked up and my processing speed can match that of an old school computer.

You may be thinking the number of systems I have is overkill, but this is how I maintain a life that is not predictable.

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Without these systems I get to new places and I shut down, think of the worst pain you have ever been in, that brain fog that overwhelms everything, that’s kind of my experience. Or maybe a better description is that moment when you can’t think of a word it’s on the tip of your tongue, you can feel it in your brain but it just won’t let you access it. Now imagine things like how to start/continue a conversation, how to walk into a room (how to leave to got to the loo) are just on the tip of your tongue, it’s not great.

More to the point, without these I may not even get involved in half the interesting things/people that I do manage to engage with.

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While I don’t always pay attention to these lists and systems having them in place is useful and I update them the more I learn (as most of them are internal). I am constantly trying to figure out a balance, but often (even with my systems) this is like trying to control a see-saw when the other side is an over-excited child.

The more I think about this metaphor the better it gets: I mean as an adult you can sink down and stop the see-saw but what you’ll get is a child in the air in tears or jumping off: the inevitable injury. But also as soon as you push off you are at risk of the child pushing with the whole force of their body leaving your knees at severe risk. Sometimes you get off/fall off the seesaw and you take some time away but eventually you get back on and try and figure out this whole balance thing over again.

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I’m not sure if this made any sense or was even that accurate but I gave it a good shot and I still just about managed to post it on the Friday (just about).

Part 3. of horrible things to happen to my cervix – coil edition!

This is our third guest blog by Megan you can find the first here and the second here.

This is a weird one, as it is a personal choice to inflict this pain on myself. I have been struggling for a while now to find a method of contraception that works for me.

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The combined pill worked well, I don’t really have much of a problem remembering to take a pill everyday, but I have been recommended against it due to a couple of dodgy blood pressure readings.

I moved on to the Progesterone only pill which caused a lot of problems; I was left with a fairly constant light period for months on end (which to be fair worked quite well as a contraceptive in itself).

Then the depo injection, which worked brilliantly but is not supposed to be used as a long-term method.

Finally, I tried the implant which worked!… until it didn’t. After just over a year I was back on a constant period which led to part.1 and part.2 you may also have read about.

This left my GP recommending me the coil and after all my problems with hormonal contraceptives I decided a nice mechanical method that works for 10+ years sounded brilliant!

The coil (aka. IUD or mirena the hormonal version) is a small T shaped device that sits in your uterus and stops conception. Just to clarify for those who, like my father think ‘it won’t hurt to have it put in, there are no nerve endings in your cervix’, I would like you to first have a cervix and then have someone stick a tube through it and then, and ONLY then, can you decide whether it will hurt.

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Having the coil fitted was probably the least traumatic though! But then saying this, I am also fairly experienced in having my legs up in stirrups by this point. The process of getting the coil was fairly straight forward, I called my GP’s office and asked ‘can I book a coil fitting?’ The receptionist told me I needed a consultation with the Doctor who would insert it first.

This seemed reasonable and was a fairly useful appointment. I asked all my questions about the different coils and my medication, I was told to take paracetamol before my appointment and that although it may hurt a bit most women ‘could tolerate it’.

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Bearing in mind the things women ‘tolerate’ I wasn’t much comforted by this. However, I left well informed and booked to get it inserted.

Now we fast forward to insertion day and I am sat nervously in the waiting room trying not to think about how many people have told me it hurts. Is this a good idea? Is it really necessary? Maybe I could just cancel the appointment and go home and just live with the constant slight period that my implant has caused!

Alas! My name has been called – there is no going back now!

‘So Mirena or Copper?’ – The two different types of coil, one uses a small dose of progesterone hormone, one seemingly uses black magic to do with copper. I opt for the copper version purely because of my previous experiences with hormonal contraception, I am not going through getting a coil fitted just to find out that it causes the same response as the implant!

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Here we go again! Pants off and legs up in stirrups. Surprisingly, in this appointment it’s only me, the doctor and one nurse (who while I’m sure doing a whole host of very important things, seems to be there purely to comfort and distract me).

The one thing that really got me this time was that I didn’t take my socks off. It didn’t occur to me due to the cold floor but the moment I put my legs up in the air and said I was ready I was completely overcome with the thought that I should have taken off my socks. How bizarre to be fully nude from the waist down and yet still sporting my glittery space themed socks. Feet warm and yet breezy in the downstairs. Do you think people usually take their socks off? I wonder if when I’m nervous my feet sweat like my hands do, because if so it’s gonna be real grim putting my shoes back on! Do you think I have time to stop them and take my socks off before they start? Or will drawing attention to the socks make the fact that I left them on look even more weird? Its official, I had missed the sock gap…

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Luckily the nurse and I start chatting straight off and my brain stops focusing on my socks. I love the nurses and doctors who are good at small talk!

‘What did you get up to this weekend?’

‘What would you be doing today if not this?’

‘What have you got on for the rest of the week?’

If there is one thing that helps keep my brain off pain it’s rambling incessantly about stuff that doesn’t really matter!

Me and the nurse talked Netflix and Yoga while the doctor popped in a speculum and had a look around. She also had a bit of a feel around at one point which was a more awkward look away and pretend it’s not happening moment. Once she was back in with the speculum stuff started to get pretty uncomfortable and crampy, but I kept nattering away about my weeks plans. When she stopped I sighed a breath of relief.

‘Not too bad… is that it then?’

No no, that was just my cervix being measured. The insertion was where the real fun was at! I was mid talking about the work I had to do that week and then came along a new kind of pain, an ‘ooo that would be in my cervix then!’ kind of pain.

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Then in almost no time she was done, the lovely nurse helped me shuffle up the bed a little so I could have a little lie down and a breather. When I was ready I tried out a sitting up position, then when that was alright I donned my clothes again (noticing that I was right, I should have taken my socks off after all because my feet had nervously sweated).

I was again given a bunch of leaflets (I have a nice hefty disorganised pile and folder full of these darn leaflets) about the coil and a questionnaire to fill in after a couple of weeks.

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I left breathing heavily, there was a lot of pain, when I made it home I set up shop with mildly entertaining TV and a heated pad and sat and groaned ‘till well into the evening. In reality, it was probably not far off the crampy-ist part of my period.

After that day things got good, pretty quick. I had minimal to no pain the next day. I did bleed for 3 weeks, although, I think I deserve it after shoving something into my uterus. Fingers crossed a long-lasting method of contraception that is going to work for me. Nothing works for everyone, that I can certainly attest to! The coil certainly won’t! But for those who are interested, it isn’t as bad as you think it will be and the pain is temporary!

My anxiety is certain, it’s a head clearing, “you are not doing this”, absolute bitch.

The fifth post by Rosalind links to her others can be found at the bottom of the page.

It took me a good 20 years to realise I’m an anxious person. When I thought of anxiety I thought; nervous, nail biting, self-doubting- and that just didn’t compute with my experience.

My anxiety is certain, it’s a head clearing, “you are not doing this”, absolute bitch. My anxiety is a self-assured monster; it’s smug and self-satisfied. If I follow my anxiety back into the hermit cave where it wants to live, it’s happy as fucking larry.

While that’s all very well and good for my anxiety, it means I don’t eat, socialise or look after myself; which is not a good combination for adult life.

teeth

I tried suppressing my anxiety; this didn’t work very well, as it takes up a large portion of my brain. One of its main moves is to affect my thinking; it slows down my ability to process information. You know when you get to that level of drunk where you are almost out of your body and it’s on automatic?

It got to the point where I was so disconnected from my life, feeling normal things was difficult; which leads to crying in public and generally withdrawing from life (which is what my anxiety wanted in the first place damn it).

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This is when I went on anti-depressants (I may expand on this experience later) for 6 months, and started to discover the world of women with Autism. From this point I started managing my anxiety better (I still didn’t call it anxiety.) I started to look at what situations made me feel, I realised I process things differently and that physical environment can have effects on my anxiety (being diagnosed Autistic also helped a great deal).

walking

For example walking past this wall (see gif) makes me feel dizzy, lightheaded and puts my whole body on edge. This was the sort of thing I wouldn’t notice before and would try to attribute to the situation/person I was with, or the thoughts I was having.

One of the things my anxiety does is wipe my brain of all the useful information. It’s like the pilot of the plane has passed out and all you’re left with is a passenger who has played a lot of video games (yeah not going to cut it). If I take my time I can access some of the useful information, but if I’m in a pinch, I got nothing.

The passenger in my brain also happens to be a nutcase (you know that voice that ponders things like ‘what would happen if I just punched that stranger/jumped in that fountain/said this inappropriate thing’). This nutcase passenger can sound sane, sensible and also very similar to the pilot (which makes things interesting).

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I wish there was an easy way to manage my anxiety and I could smile (and wave my arm around in that knowing way) and tell you I’ve figured it all out, but that would be bullshit.

So instead here is some questionable advice from someone that has spent most of the last week sleeping, but has still managed to go to work and socialise because even though I’m a mess, I’ve still got it together (or at least I’m holding something together and making the most of it).

The zen art of breathing– oh hey didn’t you know if you just focus on your breathing your anxiety will float off into the ether, well that’s not true but I find focussing on my breathing and counting to ten (sometimes again and again, I get so sick of counting to ten) can give my head enough time to jump back into gear, or it gives me enough space to be able to figure a way out of the situation.

Soothe your soul with music– and I’m not talking about relaxing whale sounds, I listen to all sorts, something with a bit of movement can get me out of bed and dressed (Arctic Monkeys was the go to at one point), slower stuff can calm my racing brain (I favour Tom Rosenthal). I have a tendency to forget music because I find it difficult to find new stuff, as I like music from across a whole spectrum of genres (if you have any recommendations I am trying to collect more, any genre, send them over).

Finding some space– moving into a more restful place is the ticket, or more likely I find myself sitting on a toilet with my head between my legs until I can assess clearly, it’s always okay to sit on the toilet for ages. Although if your uncomfortable about the idea of people thinking you’re taking a hefty shit, just walk out, take a call, find a quieter space.

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Grab a friend– I find it calming to speak to people who know me, as my anxiety can make me feel very separate from myself (dissociation). It’s grounding to talk to someone who knows me, just hearing a familiar voice can be helpful, the phone can have less pressure than a face-to-face interaction. Just hearing about someone’s day can calm the noise in my head.

Let’s get physical– that was slightly misleading, but I’m not sorry, I love to dance even though sometimes it’s the last thing I feel like doing, linking it with the music, I put on something with the right rhythm and I can’t stop myself. On this note I realised sometimes I purposefully make myself late, so I have to half run, having a reason for an elevated heart rate can make it less overwhelming and reduce my anxiety (also I can find it easier to say I just ran here than saying I’m anxious and fluttery). This can backfire if I’m thrown into a more stimulating environment immediately, as my heart rate is already raised, something I would not find stressful can send me into a ‘panic attack/utter headblank’.

No seriously lets get physical– still not talking about sex (I know I’m a tease) but physical affection is important; I like holding hugs a little bit too long, playing music on friends arms/shoulders, my family likes to lie on each other. If I feel super comfortable with someone (mostly this is my sisters) I like to do things like find the strangest way of holding their hand or share a t-shirt sleeve, hold an ear.

Fuck it all– just take some time off, the more productive way I do this is by structuring my week to have a bit of me time; nice food, coffee shop, bath etc. Less productive version is to fall in a hole of binge watching some series, buy myself easy to cook food (if I’m sensible) and not really leave my bedroom except for essentials (which now includes work and socialising, well done me). The even less productive is taking every opportunity to sleep struggling with the idea of getting out of the house even for food, cutting into my socialising for sleep.

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Get the fuck out of here– I’m still waiting for my Stephen Fry moment where I fuck off to Belgium for a week (considering I’m comfortable on public transport now, getting better at handling new places and enjoy throwing myself into stuff this is coming). Currently I take long walks, go to friends houses (this is not limited to my immediate area, the world is my oyster).

Check yourself– anxiety can cause spiralling thoughts and paranoia; it’s easy to let yourself believe things that aren’t true (or are half true) and keep seeing signs that support your conclusion. I’ve had moments where friends I’ve introduced to each other have hung out without me… need I say where my brain goes? I find trying to supress a thought just builds it, so I go full researcher on it. I examine the situation from different angles and perspectives; I look at all the possibilities until there are so many options I’m no longer convinced I know something. But if still having trouble I ask someone I trust or I clarify; ‘did I hear it right?’, ‘did they say it right?’ more often than not the answer to one of these is no.

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Don’t assign blame– it’s very tempting to tell yourself that people around you or the environment you are in, is what’s causing your anxiety, and you could be right. However it could also be your insides responding to something you are not aware of. Assigning blame can also mean you create a link between someone/somewhere and anxiety that wasn’t there in the first place (isn’t the brain a clever thing). Acknowledge the thought let it drift past, come back to it later when you’re not in a heightened state.

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This may all feel very specific to me and you may feel like you’ve gotten nothing out of it (except realising what a together person you are, well done you, no seriously I’m impressed, any tips?) maybe your anxiety doesn’t manifest itself in the same way, but from my extensive reading it seems to me like it’s coming from a similar place. My coping mechanisms have come from trial and error and figuring out how to read myself better (and having people around me who are gently or brutally honest).

I now understand the metaphors of making friends with your depression; though I still think they’re a little shitty and limiting. I think it’s more realistic to say treat your anxiety like a baby, sometimes you can figure out the source of the crying (hungry, tired, cold, just shit themselves), other times it’s just about singing yourself mad, rocking, crying until you both wear each other out.

Just like when you have a baby, letting someone else give you a hand does not mean you’re weak, it also doesn’t have to mean someone dedicating a set amount of time to focussing on your issues (that’s what therapy is for, maybe I should get some). I enjoy going with friends to do shit they need to get done (this can be mutually beneficial if I also get something done) or making dinner for a friend (or visa versa) etc.

So look after the baby that is your anxiety, it’ll get older and you’ll figure out more things about it then puberty will happen and everything will get fucked up for a bit, but hopefully it will leave home (although considering the economic state maybe not)… that metaphor went a bit far (not sorry though). To end this here are some video’s I have found useful in my search for sanity?…/peace of mind…

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Thanks for sticking with me through this one, all the art is my own (find more here) and my previous blog posts here, here, here and here

“I feel good, I feel great, actually I don’t but I’ll keep going anyway”

The fourth blog post by Rosalind, links to previous three blogs can be found at the bottom of the post!

It was at the beginning of 2016 I started singing this little bit to myself (in the tune of barneys I love you):

“I feel good, I feel great, actually I don’t but I’ll keep going anyway”

I sang this to my sister when she was in hospital; she said it was super depressing and didn’t make her feel any better, but each to their own I suppose.

There is something in this ‘depressing’ little jitty that made me feel better about the various shit that occurred throughout the year: be it my digestive system fucking up, anxiety, depersonalization, something shit happening etc. I can’t really tell you what it is about singing something that begins cheery then turns grim that comforts me, but singing this to myself has got me through.

2016 was a temperamental year, despite this personally I feel like I had a good year. I think part of that is due to the fact that even when things got really shitty a small part of me would just pipe up and be like ‘it’s okay, you can handle this, even if that doesn’t mean being the most functional person’.

This blog has been a big part of that; it’s helped me figure out a way to talk about being ill or feeling shitty and anxious without it being so much of a big deal. It can even be a great conversation starter.

Looking back at my calendar for the year is slightly baffling to me*, it’s a clear sign of the difference of how much more I’m capable of, how I can be not okay and keep going.

I have over the years managed to surround myself with some great people, who are very understanding, interesting and just great (wherever they happen to be in the world). Despite the fact that I have ‘moaned’ about having too many friends (the struggle is real) just having people in your life who don’t mind how tired/sick/anxious you are when you turn up to spend time with them is priceless.

This goes both ways, the other day I got a text saying something along the lines of “I’m feeling shitty not going to make the cinema want to come over for dinner”, I have a friend who frequently turns up really grumpy or unwell to see me. I’ve had really enjoyable evenings despite the fact that me or whomever I’m with (or both) haven’t been on top form. Alternately I’ve had evenings with friends that have been less enjoyable because of various things, but it’s just been nice to have the company.

I also really relish time by myself, especially this past year when I have not had as much as before (when did my life get so full). Even when I get crushingly sad and feel the weight of nothing really meaning anything or I just feel really disconnected from reality, there is something kind of comforting in my head. This hasn’t always been the case, another thing this year has kind of changed.

I have come to terms with my anxiety more in the past year**, I’m going to attempt to write more about anxiety in a future post; it’s been a journey. I have honed in my coping mechanisms and figured out the root of some of my anxieties, which makes them much easier to deal with.

I’m still a mess of a person and I fuck up, I struggle with silly things, my brain goes on strange journeys and creates problems that aren’t real but that’s just how you know you’re alive isn’t it (or maybe I’m just in denial but at least I’m happy some of the time).

To end this strange post I’m going to share some things from 2016 that made my life more enjoyable:

Podcasts:

  • The Bright Sessions
  • Terrible Thanks for Asking
  • ars PARADOXICA
  • The Orbiting Human Circus of the Air

Films:

  • Whiskey Tango Foxtrot
  • Golden Years
  • Hit and Run
  • Touched With Fire

TV series:

  • Detectorists
  • You’re the Worst
  • Fleabag
  • Campus

*Seriously though a week off for me, back in the day, could mean I wouldn’t see anyone because I needed the down time, now a day off can mean I socialise in the evening, who am I? Although I have been thinking more about fucking off somewhere on my own for a weekend… my pen, sketchbook, some books and me… maybe by the sea.

**I never used to think of myself as an anxious person; in fact I hated the word anxiety, but since I realised I was thinking about anxiety wrong my mind has been blown; anxiety while it can be restrictive and crippling can also be useful.

If you want to catch up on my other posts you can do so herehere and here.

 

Why I no longer want to pretend I’m not sick, anxious and absolutely capable of dealing with shit

I wrote both the poem below and this blog post a few months ago after a very tough couple of weeks. This culminated in a Gastro-endoscopy; which I had on the same day the Brexit result happened (I mean at least I was sedated).

The Gastro-endoscopy didn’t really give me any more answers than I had, which was extremely frustrating. I spent the entire day after coming back crying in a ball in my bed. This blog post was written shortly after.

For those who don’t know I have had gut pain for about two years (I say gut as I now know where my stomach actually is) and earlier this year I started getting acid reflux, nausea and food coming up my oesophagus but never making it out (I never thought I would miss vomiting). It’s still under investigation.

I now talk about being unwell more than I did, I have been looking after myself better and I have begun to understand more what helps (sometimes that means dropping some none essential self care behaviours).

I have learnt the zen art of breathing through the discomfort, I am picking up on when I need a break and when I can just push on through. I am balancing rest/work/friends much better.

I do not feel as frustrated as I did when I wrote this, but I still relate to the sentiment of it and I think others will too. So instead of trying to write a less ranty post I want to share this one.

I don’t want to hide the really shitty moments because we all have them, being ill (whether physically or mentally) wears you down. One of the reasons I can be positive about my life is because I accept it when it’s shitty and I let myself feel that. I also express it more than I did, I let others know which takes the pressure off; you don’t have to be a competent human all of the time.

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To be honest with you I’m tired of just being a capable human. I work in customer service I smile and say no problem. I see friends and can be present, I can listen, I can entertain. I am developing my skills for my future by making contacts and seeking volunteer work.

I can do all of this even when feeling completely shitty. That sensation you get just before vomiting, the moment the food starts to come up and your body prepares itself, well I’ve smiled and chatted through that (as I said I no longer get closure on my nausea).

Frequently nowadays if I get a moment to myself, I collapse I can’t bear to think about anything, I can’t muster the energy or motivation to make art, one of my favourite things to do. This is because I’m sick and I’m fucking exhausted.

I’m not unhappy, I’m not lonely, I’m not bored and I am certainly not uninspired; I have notes everywhere with ideas ranging from mediocre to brilliant. My body is broken and it’s a fucking whiney bitch about it.

I would like to compare it to looking after a difficult child 24/7. I have to monitor my energy, sometimes my body can handle dealing with real life, socialising, working I mean it’ll complain about it but it can deal, but other times it just screams, shouts and trys to destroy everything it can reach (this is when I don’t leave the house).

I have got to that point where I can keep going more than I could, I can pretend I’m ignoring the screams but it’s more noticeable. I can laugh about it to friends and they can’t hear the shouting, but it’s useful to let them know I may not be able to listen fully, I may not be as engaged as I should be.

It is of course easier with a child as you can physically get away, but as that child in this terrible metaphor is my own body, this means I’m shut in with it. I binge watching episode after episode of terrible tv shows (to distract it), while also sending important emails and maintaining friendships, because sometimes you just have to drag the screaming child behind you as you pick up your groceries.

I can deal with the screaming child that is my digestive system, but if I am going to stay sane I need to talk about it. Whether anyone wants to listen or not is there choice, while I am not going to let it be the only thing I talk about, I will not expand more energy than is necessary pretending it isn’t there.

I know it may be fucking dull sometimes, I am drowning in the apathy I feel towards my own fucking pathetic pain and discomfort but it is not all I have. Being ill does not make you a shit person to be around it does not mean you are incapable of having fun, of talking about interesting things.

So when you next get frustrated with someone, whether you know them or not, take a minute to think about what you can’t see, what you may not know about their life (they may be just as frustrated with themselves, if not more). I have benefited many times from this kind of understanding and you probably have too (even when you were being shitty for no reason) and it always makes things a little better.

So I’m Autistic but what does that mean?

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Roz’s second post for TOTM!

I was diagnosed with Autism Spectrum Disorder two years ago, so by all rights I should be able to explain it easily and talk about how it affects me, not the case apparently. On probably about my 8th attempt at this post and I’ve cracked out the wine, it has to be done.

“If you’ve met one person with Autism, you’ve met one person with Autism”

 This slightly stupid sounding quote rings so true; people with Autism are just like people without autism; intensely varied individuals. Autism being a spectrum condition means even the definition of Autism varies from person to person. I have seen this first hand having friends and family who also have Autism. This post will mostly cover my own personal experiences with Autism.

“Mild autism doesn’t mean I experience my autism mildly. Mild autism means that you experience my autism mildly.”

I have had good friends initially skeptical about my Autism or saying I have ‘Autism light’ this is not an uncommon experience. A lot of the difficulties that Autistic people face are hidden or masked especially in women on the spectrum. The common phrase that ‘everyone is a little on the spectrum’ also doesn’t help. The spectrum is a spectrum of people with Autism, you may have had some experiences that Autistic people experience but that does not make you Autistic. Just as having diarrhea a few times does not mean you have a chronic bowel disease.

‘But you’re so social’

I am not unable to be social because I have Autism, I am not unable to have different kinds of relationships with people. Socialising does not come naturally to me: I am not shy, I don’t feel nervous, I just don’t get it. It’s a skill I was born without, it’s a skill I learnt; you can thank my ability to participate in small talk and engage in everyday conversations to years of study and practice. Even using facial expressions, eye contact and varying tone were things I have learnt that take an active effort.

You may have experienced that moment of walking into a group of friends who are throwing inside jokes and words you don’t know about. When you try and add to the conversation everyone stops to look at you then continues like you haven’t said anything. That feeling like everyone knows something you don’t, is something I experience in most social situations even in groups I have inside jokes with.

I struggle when people are ambiguous especially if they have asked me to do something. Something that may seem like common sense can be the equivalent of someone asking you to ‘put the thing on the whatsit’. Sometimes it’s because I see so many different ways of doing things. It took me a long time to realise that most of the time it’s not about how you do it, it’s just about getting the task done, but that’s still difficult for me to do.  I am now better at asking for clarification – learning the source of my difficulties helped me put in better strategies.

Emotions have also been a great source of confusion to me, a close friend of mine told me she understood me so much better after a moment in the Big Bang Theory where someone said “Sheldon doesn’t have emotions” and she realised that was like me. Of course that’s not true, it’s not that I don’t have emotions, but I don’t have the same emotional reactions as neurotypical’s.

It took me a long time to realise that people had different emotions to me, for a while I tried pretending to have normal emotions – people seemed fooled but this in itself was exhausting. I did this without knowing that’s what I was doing, it helped that people would give you hints ‘oh you must be really sad about that’ ‘you must be so pleased’ etc.

Before I was diagnosed I would frequently burn out from socialising, I was trying so much to be like other people. Being myself more has helped me connect better with people I’m close to and people I meet.

You’ve probably had that moment where you get a present you don’t like, you open it in front of the person and have to pretend to like it otherwise they’ll get upset. That’s an emotion they are expecting, that is the feeling I used to have all the time. Initially I didn’t realise that people got upset if I didn’t seem to feel things, because that concept is crazy, think about it rationally in regards to the first example: I would not want to get someone a present they don’t like, so it’s much better for me if they let me know when I’ve got it wrong I’d rather know.

I have studied people since I was very young, you may know obsessions are a big part of autism, mine is people and how people work, initially looking at social interaction and emotion later branching into psychology and neuroscience. It is a very satisfying obsession as there is always more to be learnt; people are intensely complex and all in different ways. I find patterns in behavior and I see things that other people don’t. This isn’t always a good thing, apparently the question “why would they do that?” isn’t always meant to be answered.

Obviously this obsession has aided my social ability, however it can also hinder it in some cases. I can get so wrapped up in everything behind an interaction I no longer know how to interact. Misunderstandings are inevitable: however I can find them excruciating – I don’t use that word lightly – I have strategies and looking at them as a way of learning helps.

Sensory issues are also a large part of autism, imagine for a moment a baby is screaming right next to your ear and someone is poking you, now think about having a conversation while this is going on, difficult right, well imagine the person you are talking to can’t hear the baby or see the poking. This is sort of what a sensory overload is like, it can be the smallest of things but it makes seemingly easy things feel like wading through treacle.

I have a whole host of coping mechanisms for the different aspects of my Autism, I have also been lucky having supportive family and friends throughout my life. I have a large amount of anxiety about different things, but I have a high self-esteem (some may say too high), which is due to the support and understanding of family and friends. I have only briefly touched on some of the things I experience and if you have any specific questions feel free to ask them.

Below are link’s to some websites with more information about Autism that I have enjoyed and found useful:

An illustrated explanation of the Autism spectrum: http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum

If you are a female and felt the things I was talking about applied to you this website has a list of female Asperger traits that I found useful: http://www.help4aspergers.com/pb/wp_a58d4f6a/wp_a58d4f6a.html

Also these are a couple of excellent female bloggers with Autism worth a gander: http://aspertypical.com

http://www.purpleella.com

How are you?

 

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The first blog written by Roz!

Hello human, how are you? Good? Busy? Knackered? Anyone with digestive discomfort? Stomach pain? Headache? Chest pains? Joint ache? Come on let’s get it all out. Feeling anxious today? Got any bowel issues in the house? General fatigue? Chronic pain? Weight insecurities? Depression? Dizziness?

I know we don’t often talk about it, we’re so used to keeping going, getting through life, but this is a safe space and I want to acknowledge the feelings that don’t get shared regularly.

I had multiple thoughts on how I would introduce myself on this blog, I could have gone in for the emotional angle, being ill in your twenties as a woman, the educational ‘how to be a friend to an ill person’, I could talk about being a woman with Asperger’s. I am however going to save that for later, today is about greetings. ‘How are you?’ such a simple question a commonly used greeting with so many complex answers.

There are many forms of this question ‘What’s up?’ ‘Wagwan?’ (as my Croydon housemate used to say) ‘How’s life?’ I could go on. When in passing you’d usually respond with a simple ‘fine’ or ‘good thanks you’ even elaborating ‘absolutely knackered’, ‘insanely busy’; simple, to the point, get the job done and move on answers. Then with closer friends you may elaborate; ‘mate it’s been a crazy day….’, ‘So tired I can’t even think right now’, so many possibilities. There is also a standard ill response for short-term illnesses; ‘I have a cracking headache/awful cold/explosive diarrhoea’… you get my drift, but how do you express an illness that is more everyday? Being honest I want to say ‘my digestive system feels very uncomfortable but I’m pretty good been busy blah blah blah’ you may think, not a problem, sounds great; thing is it gets a bit repetitive, digestive discomfort is currently my everyday experience and has been for months. Good friends have turned to me and said ‘Your stomach issues haven’t been so bad recently have they’ assuming that because I haven’t brought is up it’s sorted itself out. Sorry to say my body still hates me, once it stops you’ll know – I’ll be shouting it from the rooftops.

It’s difficult not having a diagnosis, a simple explanation that I can role out, I have to specify what it is that’s fucking up today. For two years now I have been experiencing gastro-intestinal issues; gut ache, bloating, acid reflux, food reflux (without actually vomiting – so unsatisfying, I never thought I would miss vomiting) etc. I have had various tests but nothing specific has been found, there have been theories and I am currently awaiting the results from the most recent tests, which I have a feeling (based on observation of those administering the test) might show something.

It’s much easier when you’ve seen the back of something; ‘I had this [symptom of any kind] for [an amount of time]’ it was exhausting/awful/difficult’. It’s a story, we can disconnect, that was past me it’s got narrative arc, beginning middle end, that last one is the glory moment; end, it’s over, I got through it. It’s not as easy when the story is more complicated, going on a few weeks/months/years when you’re under investigation.

Not only is it difficult internally not having a diagnosis (if I had a pound for every time I have tried to convince myself I’m insane and it’s all in my head; not taking painkillers until it gets crippling because I am clearly just a hypochondriac and it’ll disappear if I pretend it’s not there. It doesn’t) it’s also difficult to talk about, I only really started to tell people generally when I thought I had the answer. It’s the same with a lot of people I know, my best friend got a colonoscopy without me knowing (she does live about 250 miles away and our communication is sometimes sporadic due to life) I found out once she had her diagnosis- she had mentioned health issues but not in that much detail.

It makes it so much harder dealing with it alone, when you’re not sure what’s going on, flipping through thinking you’re making it up and just wanting an answer. Since talking about it I find it much easier to deal with life because it’s a thing people know, it’s not about being treated differently just about shit being acknowledged. We all have things that make life difficult, a lot of things in my life are going really well; in fact it’s really just my health that’s not (the opposite of the cliché ‘at least I’ve got my health’).

From talking about my own health issues and talking about this blog so many friends and acquaintances have revealed their own health struggles or things going on with family and friends. It’s been such a positive experience and one of the things I personally want out of this blog is for more people to feel able to share their health issues and not think that they’re bringing the mood down. So try telling someone how you actually are when they ask see how it makes you feel, let’s see if a bit more honesty can make us feel just a little better. I promise I’ll try more too.