Mental Health Awareness Day

This post was originally written on this day two years ago on my old blog. It’s words are still very relevant so I decided to republish with a few amendments. I hope that today is an ok day for as many of you as possible.

“So today is October 10th. “Mental Health Awareness Day”

The day when people rally behind the cause of mental health. The day when people make posts about their stories, share inspirational quotes and tell people “it’s ok not to be ok”.
You’d think given my history, my experience running online support groups, my hopes and dreams of raising money and creating initiatives which will help people who suffer from these very problems, my constant openness and frankness across all platforms of social media that I use…you’d think I’d be at the forefront. You’d think I’d have made plans for today (I had), have my posts and encouragement and particular brand of sass ready and waiting to spread the word, to tell people, nay SHOW people, that you have nothing to fear and you should never be ashamed, you should be loud and proud and fuck what anyone else says!

You’d think so, right?

Wrong.

Because the thing is with mental health…you don’t get to pick which days you’re feeling strong. You don’t get to choose when you are able to shake it off and be there for everyone else. I pride myself on going above and beyond for the people in my group whenever I can. I’m the queen of “my inbox is ALWAYS open if you need a chat”.

But today, I am no queen. I am that thing lurking in the dark dungeon beneath the castle. I am grouchy and snappy with my family. I am the mum with no patience because I’m trying so hard not to scream at myself let alone anyone else. I am the wife who wants nothing more than to hide in bed and cry all day for absolutely no tangible reason other than it’s all I can do, yet I worry my husband will think it’s somehow his fault…so I drown in conflicting guilt and anger. I am the make-up free, scruffy mess who holds a middle finger up to the world while wearing a “Mr Happy” t-shirt as some attempt at ironic humour. I am my worst…

Yet…

It is at my worst that I may be able to do my best. We all have bad days. It’s not just “ok to not be ok”. It’s also “ok to not be ok with the fact you’re NOT ok!” I can show you myself at my worst, and maybe someone out there can identify with that. Maybe they can see themselves in me at my lowest, and therefore realise that there will also be days when you CAN be a queen (or king, or gender neutral badass, whatever floats your boat). You will also have days when you can help others. There will be days when you dare to hope that one day you can reach for the sky and actually find out you’re already among the stars. Maybe you’ll rock a killer hair cut or be pleased with something you made and did. Maybe you’ll post some artwork or a project you’ve completed and get so much love for it you’ll almost cry. Maybe you’ll make someone laugh, or feel warm, welcome, or loved.

Maybe you’ll get a message from someone you don’t even know saying they see you being open and honest and it helps them to be ok.

So on this day of awareness, I give you maybe my most “aware” post to date. Have a bad day. Scream, shout, be a grumpy pain the arse and try not to be too hard on yourself. Just try not to forget those days when you felt ok. Bad days come, but they also go. The guilt that comes from having a bad day is one of the most evil parts of mental illness. It makes you feel like shit and then makes you feel bad for feeling like shit in the first place. Like it’s your fault. Like you’re broken. “Why can’t I just be happier??” I can’t answer that. What I can do is show you a bad day. In all its broken, painful, messy glory and then sometime soon you’ll see me have a good day. You’ll see me being positive and sharing some make-up or creative stuff that I’ve done. Or you’ll see me on social media buzzing with ideas on how to help people. Or back on my soapbox being that uppity social justice warrior you all know and (maybe) love. Then maybe you’ll remember that next time you’re feeling like I do today…it will get better. It can always get better. Don’t give up. The good days are worth it I promise.

Stay Shiny Warriors xxx”

#mentalhealthawareness

Life in Limbo…

The initial jubilation at having been taken seriously by my GP and being told I was being referred has long since gone. I’m now existing in that place between. I’m in limbo. Purgatory. I’m just waiting.

The more time I spend within the autistic community, the more sure I am that I am a legitimate part of it. But I still feel like a fraud. I don’t feel like I can claim it as part of my identity.

I know it shouldn’t really matter. It shouldn’t change who I am. But I can’t help but feel incredibly frustrated. Part of me feels like my presence among these people is a lie. Like I’m deceiving them somehow. I feel more at home than I ever have yet I worry that I’m going to be exposed…worried that people will point and shout “LIAR! SHE DOESN’T BELONG!”

I feel I need to be open and honest about these feelings, mainly so I can be as transparent as possible. I always endeavour to be as honest as I can. I struggle a lot with admitting my feelings and part of this journey for me is to try and stop hiding my reality from myself any more.

Part of me dealing with that is writing this blog. I find writing so much easier than the spoken word. I would never consider myself non verbal but since finding this community I have admitted to myself that verbal communication is becoming increasingly difficult for me. When I write I can always find the words. I can consider my viewpoint and express it far more eloquently than I can if I’m speaking. I’m sure many people can relate to that, whether on the spectrum or not, it’s hardly a rare personality trait.

I genuinely feel like I have spent the first 34 years of my life wearing a mask. It became so much a part of me that for a long time it was indistinguishable from who I actually am, even to myself. But now I can look back on it and see it for what it was. They call it “masking” and that description is spot on. I would put on my “person” suit and go and interact with the world. My brain inside myself was constantly aware it was going on but I just assumed that was how everyone felt. I felt like it was just how we coped. I often felt like the real, tangible “me” was trapped in this little corner of my head and trying not to be discovered. I was always worried that I would be found out. That a reaction or a behaviour would betray me. This last couple of years it has become exhausting. I honestly feel it is a major contributing factor to my fibromyalgia. At least the chronic fatigue aspect of it. Constantly having to feel “on” at all times is knackering. I am constantly worried I will do or say the wrong thing, or that people will think I’m odd, awkward or rude. I’m very good at hiding it, but that doesn’t make it any less real.

One of my promises to myself is too try and let that go. To stop hiding and being ashamed of that “me”. But it’s incredibly hard. I don’t know where the mask ends or where it begins. Putting the mask down is like a child walking away from it’s parents on that first day of school. It’s like a baby bird’s first terrifying jump from it’s nest to see if it can fly or if it will fall and fail. The mask is a security blanket, one I don’t know if I’m ready to let go of…even though I know I should.

I remember one time when I was in maybe 8 or 9. I had stayed at a friend’s for a sleepover and left my actual security blanket at her house. This blanket was EVERYTHING to me at that time. I had repetitive behaviours I did with it that helped me cope. I was sat in class and I saw my friend walking across the playground holding my blanket. The embarassment I felt at that part of me being exposed to my whole class forced me to jump out of my seat and run out of the class to go and get it from her. I remember it as clear as day. I was a stickler for rules at school but I just couldn’t let anyone see that. My close friends knew but it took a lot for me to trust anyone to see me with my guard down. That much is still true now.

And then there’s part of me that is convinced that this feeling itself is all a lie. Am I seeing things that aren’t there? Is my desperation for answers and a reason for why I feel the way I do making me latch on to anything that floats past so I can feel like I belong?

This is the real problem with where I am right now. I just don’t fucking KNOW! How can I formulate a way of dealing with this and trying to move forward if I don’t know what I’m supposed to do? Do I commit to it and risk finding out I’m wrong? Or do I sit here waiting? All the while continuing to feel like I’m stuck, dangling by a thread, unsure if I can fly or if I’ll just spiral down into the abyss below.

I’d love to hear from some other #ActuallyAutistic people who may have experienced similar thoughts and feelings prior to their diagnosis. I feel so lost right now.

It’s Been A Long Time…

It has been a while since I’ve written, much longer than I intended. Life gets in the way sometimes and there has been a lot going on recently. I have been spending a lot of time on my advocacy and campaigning projects. For now I’m keeping that mostly seperate to this blog, however if anyone would like more information please feel free to ask questions. I’m working with a group of people to combat the misinformation of the “alternative health” industry. It’s been a great focus for my currently scattered brain.

My last blog post talked about how I was waiting for my appointment with my doctor to discuss being referred for an autism assessment. The anxiety was very real but I got it done.

I went and saw my doctor who I’m always sure is endlessly frustrated with my seemingly neverending list of maladies. I think because it seems those maladies themselves have no end and I always feel like I should be able to just “get on with it” so I shouldn’t even be asking for help. I know this attitude is ridiculous, but Anxiety Liz (yep, that girl again) is always in my ear, telling me my problems aren’t worth anyone’s time.

I went and saw my doctor and said “Hi…I think I may be autistic.”

She stared at me blankly and responded with “….oh”. This was exactly the response I was expecting to be honest. I then started speed rambling the list of things I’d written down which had led me to this conclusion in an attempt to get her to take me seriously. Everything that had been whirling around in my brain for the last number of weeks came tumbling out of my mouth as I avoided her gaze and tried to look intently at my notebook that I had brought with me.

Her face softened as she started taking notes. I’m not very good at hiding myself when I’m at the doctor. Even if I try to hide behind my words, my actions and expressions betray my inner reality. I was fidgety, nervous, my eyes darted everywhere and eye contact was impossible. I resorted to the comforting actions of playing with the silver rings on my fingers as I always do. She gently stopped me mid sentence and informed me that she would make the referral. While I could go through the long list with her, she felt it would be more productive for me neatly write everything down and give it in to the receptionist to include in my file. That way the person receiving the referral would be able to read MY words rather than her interpretation of my words. She admitted that she was unsure who she needed to refer me to as an adult, but she would look into it for me.

She had listened to me. I couldn’t believe it. It is still something I am struggling to process. I know it will take a while but just to have that one person take me seriously has meant the world.

I have continued on with my research, talking to more autistic people about their experiences and relating my own to individuals and groups that I’m part of. Now it’s just a waiting game. This is why I have been throwing myself into advocacy so hard. It’s given me a productive use of my time. I have also found my mojo again with my work and am back creating my hair extensions and writing for various blogs and websites.

The depression and anxiety are looming in the background and I’m barely keeping my head above water but I will “just keep swimming” because I owe it to myself. I need to do this. And I owe it to my husband and my daughter. I finally feel like I may be on the right path. I might be early on my journey but I really feel like the direction is FINALLY where I’m meant to be headed. I need to keep my mind occupied, that’s the main challenge. Too often I have let myself dwell on things and that is when the Black Dog secretly slinks from the hazy background to the bright and vivid forefront of my mind. That is when it’s presence is impossible to ignore.

At times it may seem like manic obsession but I have stopped myself from feeling guilt for that. It is just who I am and what I do to cope. It is hard to explain to those who don’t understand. The obsessions seem to come from left field and they can end and be replaced without warning. It is sometimes like I have little control over what my brain wants to focus on. But I’m learning to just go with it. Make use of the productivity while it lasts and try not to berate myself too much when I have periods of quiet.

Hopefully those that know me can try and understand. It can make me unreliable and flakey and that is really something I’m working on. Even if it’s just to be more communicative to the people who are relying on me, so they know where my head is at.

All I know is this is my brain. This is what it does. I’ve fought against it and felt guilty about it for too long. This is me and I need to be proud of who I am.

For anyone who is interested in checking out my latest advocacy project, involving exposing the dangers of Jillian MaiThi Epperley and her Jilly Juice protocol, which has been featured on Dr Phil this week, then please feel free to check out our Facebook page and linked group below for more information.

https://www.facebook.com/dontdrinkturpentine/

https://www.facebook.com/groups/330217164107527/

So, what next?

It’s been a little while since I’ve posted as I haven’t been able to think of a specific topic to write about, but I didn’t want to let myself fall out of the habit of writing again.

Since my last post, I’ve had so much support and it’s been awesome. It felt good to be able to talk about my “Possibly Autistic” journey to people publicly. However it’s put me in a bit of a weird place mentally. It’s all I’ve been able to think about. It has become all consuming, just like any of my other Special Interests have in the past. I’m reading articles about it, talking to autistic people about it, comparing experiences and asking for advice…

And I’m remembering.

I’m remembering so many things from my childhood. The more I hear people’s experiences, the more it’s opening doors to random moments from when I was a child. The more it’s making me think “wow, me too!” when I’m hearing other people’s traits and things they did when they were young (and may still do).

I remember the time when for a good few months I would walk around repeating everything I said to myself. I would say something in conversation and then I’d have to immediately repeat it back to myself under my breath, like an echo. I would be really self conscious of it so would try and hide it. But if I didn’t do it, I would feel panicky and anxious, it was like a compulsion.

I remember my wild obsessions. I remember being so into animals, conservation and the environment. I would devour books on the subject, spend every moment I could watching documentaries. I remember spending hours drawing posters saying “Save The Rainforest” and putting them up around my village when I was maybe 7 or 8. I remember begging my parents to take me to my first protest at aged 8 (Brightlingsea Against Live Exports).

I remember suddenly I was into horses. Every waking moment was dedicated to learning about them, drawing them, reading fact books and fictional stories and writing my own. I remember when I finally convinced my parents to let me take riding lessons and I was so happy I cried.

I remember my teenage years when I drowned myself in art and music (and the rest). I was drawing constantly. I taught myself the guitar from aged 12 and sang in a band and it was awesome.

 

I remember having a ridiculous memory for numbers and facts, it made exams easy with little revision. I stood out at school for being bored and disinterested, never doing homework, yet still getting top grades. I remember getting shit for this from pissed off classmates. I remember struggling socially at school a lot despite being excellent academically.

I remember disassociation, anxiety, a constant feeling that something was wrong with me and I didn’t know what. A feeling like I was never quite enough.

Throughout all this my parents were there. What makes all this remembering so hard and exhausting is the very obvious fact that they’re not here anymore. I can’t talk to them about this. I remember their constant love and support no matter how weird I was, no matter how much I fucked up, no matter how much I didn’t appreciate it at the time.

They were there. And now they’re not.

It hurts…a lot. I feel almost like I’m having to unlearn who I thought I was and find out who I really am, and that rock foundation of support isn’t there. My husband and friends are great, but they’re not them. They don’t remember my little quirks and oddities that I had as a child.

So I’m trying to make sense of all this without them and it’s fucking hard! My brain just won’t leave it alone. It’s like a dog with a bone (hey that rhymed!) It’s like a rabid animal that’s picked up a scent it can’t ignore and it’s just running and running and running. Not really knowing why but just knowing it has to run. It is literally all I think about from the second I wake up to the second I try and go to sleep but I can’t because I can’t switch it off.

I’m so tired. I’m even dreaming about it. I have so much else going on in my life and I just cannot focus on it. I need to work and I’m really struggling. I need to run a house and I can’t even remember the basic things that need to be done. I have to be reminded to brush my teeth, or get dressed. It’s not laziness it’s just a complete and utter “elsewhere” feeling that I can’t escape from. I feel like I’m not really here.

I’m starting to notice traits in my daughter too. It’s helping me relate to her in a way I never could before and it’s beautiful. Wild and crazy and beautiful. I see so much of myself in her that I couldn’t see before now. It’s helping me understand her more. It is one positive thing that I am holding on to. Finally I feel like I get it when I try and speak to her and she seems “elsewhere” and ignorant. I used to get so frustrated but I get it now. She’s likely just experiencing exactly what I am.

I’m not really sure where I’m going or what I’m doing but I know I’ll be OK. I may need some help to get there. I may need some support to make sure the wheels don’t just fall off everything and spill my life all over the road never to be righted again. But I’ll be OK.

It’s scary. Trying to get to know yourself as if you are a stranger. Most of the time I feel like my mind is too big for my head and it’s going to start leaking out everywhere so I have to constantly concentrate on keeping it in, as if I’m balancing a full glass of water on my head. I’ve no idea if any of this makes any sense to be honest. To anyone reading this may read like utter garbage with no sense of direction but I needed to get it out. I need a record of how I’m feeling. I need stuff written down for my appointment next week.

I need to keep remembering.

If anyone’s made it this far you have my thanks. If anyone can relate to any of these feelings I’d love to hear from you. Maybe we can wobble about on this plane of existence together and try and help each other stay sane.

Much love to you all and, as always…

Stay Shiny Warriors xxx

 

“That sounds like Me…”

This post may come as a surprise to some people but I think it’s about time to talk about this in the open.

My name is Liz, I’m 34 and a Mum to a 7 year old girl…

And I think I might be autistic.

That is a sentence I never really imagined myself saying, mainly because until recently I was really quite ignorant about autism and just how broad the spectrum really was. I’ve always struggled socially and have done things I just considered my “odd little quirks” (everyone has those, right?) but I just put this down to social anxiety, depression or any number of other things.

I spoke in another blog post about how some months ago I found myself getting involved in scepticism and science advocacy. In doing so I made friendships with many adults who are on the spectrum which deepened my understanding of it as well as my respect for it. But it wasn’t until one day when I received a random message from a friend that I ever thought it could apply to me.

Now this is not because I thought that all autistic people are the stereotype pushed out by hate groups such as Autism Speaks, or the ableist and vile anti-vaxxers who treat their autistic children as if they are damaged or broken. This is mostly because I always assumed that, as I’d managed to mostly cope with social interaction as a child and teenager, that my issues weren’t really….real. That it was “just mental illness” that made me feel this way.

A few months ago a friend messaged me out of the blue. She had reservations about approaching me in case I was somehow offended by the suggestion. She suggested that maybe I should look into the possibility that I was autistic. She had experience with it and said how she’d noticed a few things that made her think that maybe I was on the spectrum. The suggestion took me by surprise but I was in no way offended, why would I be? I don’t see autistic people as lesser human beings, just different. A few things she said made sense so a little seed was planted in my mind.

Curiosity got the better of me and I thought “why don’t I try one of those online test thingies and see what it says.” So I looked around for advice on what tests might be the most useful and bookmarked a few to look at later. When I finally got around to doing the tests I had a few to work through. I took one which came back “high probability of ASD”, so I took another. And another. And another.

They all came back the same.

Now I’m aware that online tests aren’t the most accurate and certainly shouldn’t be used as any sort of diagnosis tool but at the same time I couldn’t help but think there must be SOMETHING in it for so many to come back with such high scores. I started to notice the kinds of things that were asked which must have pointed towards certain traits. I spent time reading up on the “signs” on different medical websites. The more I read the more one thing became very clear.

That sounds like me.

Little things I’d never even considered before like light sensitivity (I cannot leave the house without sunglasses on, no matter what the weather, because the light hurts my eyes), an aversion to certain food textures (certain things I’m so affected by even the thought of them is like a serious phobia), struggling to pick up on conversational cues (I’m constantly talking over people without realising) and repetitive motions/fidgeting I do to calm down or distract myself from stressful situations. And these are just the tip of the iceberg.

My next step was to reach out to a few autistic friends I had who I’d become very close to. I felt like a fraud. I was worried people would think I was making stuff up for attention or that maybe I’d offend them in some way by making the suggestion that I was like them. Don’t ask me how that works, Anxiety Liz doesn’t make a whole lot of sense sometimes. But they were very receptive and supportive.

I would ask them about the traits they had and so many of them were things I could relate to. Then as I got more confident I started to offer experiences of my own and they could also relate. One very dear friend invited me to join an autistic Facebook group so that I could see for myself some of the experiences of other people who live this every day.

One thing became clear quite quickly and that is that getting a diagnosis as an adult is very difficult, especially if you’re a woman. The diagnostic process is generally centred around children, more specifically, boys. Many people have said to me that girls seem to be better at hiding it and presenting as neurotypical. This was something that really struck a chord with me as I thought back to my own experiences growing up.

As a child, from the outside it probably looked like I was very sociable. I generally didn’t have any problems making friends. However something that I’ve become painfully aware of recently is that it never felt natural. I remember feeling like I had to play act at being normal. I had to pretend to be someone who was sociable. It felt really odd for me to be like that, but I kept pretending until it almost became second nature.

Things which I have put down to depression and anxiety for many years are now starting to come to the forefront of my mind, and they are suddenly making much more sense. Most of the time I feel very detached from reality. Like I am a spectator watching my life happening to someone else. Now this doesn’t mean the emotions I feel don’t affect me, or that they’re not real, the love I have for my family is most definitely very real. But the mundane practicalities of going about living day to day life I feel very disassociated from. I’ve been trying to think of a way to word this feeling for ages to really try and get it across to anyone who doesn’t understand but it’s incredibly difficult. I still don’t think I’ve managed to describe it accurately. It feels like acting…almost.

Social interaction is where I notice it most. Keeping that mask up was easy when I was a child. Now as an adult it is absolutely exhausting. I find myself totally zoning out while I’m talking to people. I don’t know what’s expected of me in a conversation. Small talk with strangers feels like rolling in broken glass and then running a marathon.

I also found out that putting a lot of time and effort into special interests or obsessions was quite common. Often when I get into something I throw myself into it so much that everything else just becomes irrelevant and unimportant. It can be frustrating at times because I may need to spend some time doing something else but it’s like my brain can’t get out of the gear it is in focusing elsewhere. It is obsession to the point of almost being frantic.

Another thing I’ve been looking into recently is executive dysfunction. This is trouble with keeping on top of daily tasks, prioritising and organising etc. I always put it down to me just being a shit person at organising stuff but the feelings and descriptions of Executive Function Disorder (common in autistic people) were so true to my experience it was almost uncanny.

All of these things kept falling into place. Like pieces fitting into a puzzle I didn’t even know I was looking at. I started to really wonder if maybe this WAS me, because it sure as hell sounded like it.

Now the intention of this piece is not to try and paint myself as an autistic person who can speak with authority or experience on the subject. For all I know it might be “just” social anxiety mixed with a few other odds and ends. I might be just looking into it too much. This is why I feel like a fraud. In this day and age where people are accused to seeking attention if they write about their struggles, it is sometimes scary to put yourself out there. I might be wrong, so I’m not speaking with absolute certainty.

But I am going to pursue a diagnosis and see what happens. I have an appointment on the 26th of April with my GP. I will be writing about the process. My thinking is that if I do end up being diagnosed, then there must be other people who are out there who are like me. Not really knowing. Not really understanding. People who feel guilt for the way they are. People who know they are flawed and no matter how hard they try and live up to society’s definition of “normal” (for want of a better word) will always fall short of expectation.

Not because they are less than. Not because there’s anything “wrong” with them. Just because they are different. Because society’s standards don’t quite fit them like they do most other people.

I was really worried about writing this piece. I almost didn’t. I didn’t want people thinking I was attention seeking. I didn’t want autistic people thinking I was trying to speak for them. I was worried I’d maybe used some terms wrong or that I would say something unintentionally offensive (if I have, PLEASE tell me). Mostly I was worried that people who knew me would look at me like I was bonkers and wonder why on Earth I was thinking this way.

But I felt that this needed to come out. I wanted to start being more open about my journey, no matter where it takes me. I wanted to maybe reach out to someone who could be in my position and show them they’re not alone.

Also, I wanted to thank each and every person who has given me advice over the last few weeks. You have pretty much changed my life.

To those thinking I am jumping the gun or getting carried away, you may be right. If you are I won’t shy away from it. I’m not ashamed that I’m looking for answers, or where those answers might be.

I will never be ashamed of who I am. I am Liz. I’m 34 and a Mum to a 7 year old girl…

And I think I might be autistic.