19 Nov

Let’s talk about…Autism

the infinity sign in rainbow coloursSo, I might have been a bit quiet this year, but I’ve had a LOT to get my head around. Back in January I started to do a course named Understanding Autism by Future Learn.  I thought that I’d do the course because some friends of my son are Autistic and I thought that if I knew more about it, than I could explain what that meant, to him.  Coincidentally, at the same time I came across some YouTube videos about autism in women.

And the penny dropped. The reason behind my crazy messed up life. The reason for my clumsiness of body and speech.  The too-many-to-mention mix ups and misunderstandings.  The way that I can write fluently yet struggle in face to face communication.  Why I can’t stand wool on my skin or scratchy labels in my clothes.  Why my parents had my hearing tested as a child because they didn’t think I could hear them.  The way I like things neat and clean, and why my ears hurt if it’s too loud.  How I can hear electricity and nobody else can.  How I literally cannot hear someone talking to me if there is more than one noise of a similar volume going on at the same time.  Why I’ve felt like I can fit in everywhere and yet nowhere at the same time.  Why I seem to experience time very differently to everyone else.  Why I’m different, “other worldly”, “too good for this world”, and even “aggressive” or “patronising” or other such hurtful descriptions for my poor overloaded little soul.

How I’ve been gaslit into thinking that none of the above mattered that my experiences were somehow all in my head and I was making them up.  How all the bad things that have happened to me are my fault, because I was a broken, a wrong, a faulty individual.  That I deserved it, brought it all on myself, that I am flawed, and nobody else is that accident prone/stupid/careless/naive/other insult.

How I’ve cried and accepted that I was just faulty, damaged, wrong, a square peg in a round hole, a black sheep, defective and somehow deficient because I am unable to cope with things that other people seem to do really easily.

But I’m not. I’m normal. A perfectly normal autistic person and there are thousands and thousands of people out there who are just like me.  It was an emotional cannonball.  From my initial joy that there are so many people out there who have had such similar experiences of life as me, the confusion and depression hit me as I looked over a whole lifetime of experiences and re-examined them under the lens of autism.  I don’t want to go into it all here but I’ve had an unusual life that has been unusually traumatic.  The victim-blaming I experienced became even more upsetting now the light of autism has been shone on those dark places.

I’d accepted over the years that I was different from everyone around me, and now I find I am not so unique after all. At first this felt like a betrayal, but is increasingly feeling like a comfort.  But the comfort of a community also brings with it the outrage and despair that people like me have been mistreated, institutionalised, misunderstood, misdiagnosed and even killed because we are different.  The marginalisation and abuse of autistic people is a heavy burden to share, and it is still very much happening today.

So just as I found I am no longer alone, at the same time, it’s now set in stone that I will never, ever be “normal”.  I’ll never be able to enjoy normal social occasions like weddings and barbecues.  I’ll always stick out like an awkward sore thumb and I’ll never just blend in and be one of the crowd.  Some things in life will just always be hard and upsetting for me and no amount of mindfulness will fix that. And I know, you should be proud to be yourself, and I know I’ve never even wanted to be a Karen but I guess part of me wanted the normal two kids, a husband and financial security. I know that I have talents and skills that your average person doesn’t.  But it’s tough.

Online, the #ActuallyAutistic community is strong, and warm, and supportive and I’ve learned so much from my fellow autistics. But then I hop back into real life and realise how little people are aware of autism in my day to day life and how nobody understands or appreciates our struggles.  And why should they?  Before January, my main image of Autism was a little non verbal white boy, rocking back and forth and maybe screaming and biting people.  That it was some kind of brain disorder and that the explanation was the “extreme male brain” theory.

I have only just begun this journey, but I’ve learned that just because we are disabled, it doesn’t mean we are incapable.  That autism isn’t a brain defect but a difference in neurological circuitry.  I’ve learned that we experience the world with less filters than the neurotypical brain, and therefore our daily experiences are significantly more vivid in many many ways, some of which can be utterly exhausting and overwhelming.  I’ve discovered that simple things like headphones can make such a big difference to how tired I get in a day, and that not stimming causes me anxiety.  I have to move, always, and this is OK.  It’s beautiful to discover things that are helping me, but I have moments of regret, knowing that every area of my past from school results to avoiding abusive situations might have had different outcomes if I had just known I was different.

It’s been a rollercoaster, a bittersweet journey and I’ve barely scratched the surface here of my autistic internal voyage so far.  It’s hard to believe that this time last year I didn’t know that I was autistic – or that the professionals that I’ve encountered over the years didn’t spot it either.  I’ve still got a way to go till I achieve Autistic Nirvana and lose my well crafted but rapidly cracking mask completely but, I’m hoping, that getting it here in black and white, will help, a little.

In the meantime, I have so many ideas for t-shirts.  Here’s what I’ve made so far: https://www.wildbunnyarts.uk/product-category/t-shirts/autistic-pride/

21 Jun

Let’s talk about…CBD for anxiety

mia liljana cbd oil

My last post described my experience of anxiety, and a few months ago I found my worst days were becoming my every day, and the good days were a distant memory.   I told my GP that my medicine was no longer working and that I needed a swap. To do this, I had to discontinue my old medicine first. Then the games really began. Have you heard of discontinuation syndrome? Nope, neither had I until I asked Dr Google why my anxiety nightmare had levelled up. Add to this a complete inability to focus on anything, remember anything and my sense of the passage of time was making the world a really dreadful place to be in. 

Years ago, GPs would provide benzodiazapenes to relieve anxiety and these had a swift and effective action on me, even if the next day was not all that nice. I’d experience a little panic and wooziness when I stopped taking them, but they seemed to press the reset button on my brain and in the context of extreme chronic panic, the side effects were  absolutely worth it. This time, when I was going stir crazy in my own body, I was prescribed beta blockers. They knocked the edge off the fear but just made me feel like a really thick dry wedge of cardboard. I really can’t think of any other way of describing it! 

Then, I came someone on twitter who goes by the name of Dope Buds . They sell CBD products. Now – I had already researched CBD for anxiety and had decided not to try it because a) marijuana has a very negative effect on me, making me hallucinate and have panic attacks and b) it’s not been medically tested, so nobody knows if it’s truly safe, good quality and has no long term side effects.

However – faced with another two weeks of worsening mental distress and the only medicine I could access to help me through the discontinuation was guaranteed to make me feel like a thick dry wedge of cardboard – I was really, really desperate.  So I ordered some Mia Liljana oil, with next day delivery. 

I was apprehensive, but I really wasn’t functioning.  I was glued to the sofa, too frightened to go outside.  Discontinuation Syndrome really is a living hell.   I took half of a dropper full.  

Within half an hour, the majority of my panic just vanished.  I didn’t feel woozy, or sick, or any of the other side effects of every other sedative that is out there.  In fact, I was not sedated, i was energised!  I felt myself smile, for the first time in weeks.  The massive, loud, intrusive fear and internal noise just quietened.  It was as though I had stepped out from that awful, noisy, painful, storm, into a peaceful, gentle, colourful new day. I was up, dressed and cleaning the living room. 

While some people will no doubt argue that this is the placebo effect, I can only respond that I have never in my life been lucky enough to experience a placebo effect, even when I did believe in homeopathy and acupuncture and the like. 

It’s incredible stuff.  When I took more, I had no greater effect.  There is definitely a personal plateau level. There’s some more information about this on Hempura’s webpage.

So I’ve experimented with a couple of different oils since then.  The one I bought was a multi-spectrum CBD.  There are also broad spectrum CBD oils, but the broad spectrum didn’t have the same calming and focusing effect of the multi spectrum.  It didn’t seem to do much at all. 

CBD gummies have the same-ish effect as the oil with the advantage that they are easier consume and the dosing is presumably more accurate.  Some people prefer the gummies, like Yumi’s recover & de-stress ones (link for 20% off here), some the oil.  I actually really like the earthy smell of the oil.

Since my new medication kicked in again, I still get panicky moments and I find the CBD helpful for this, though the effects are less dramatic because I have a higher starting point, I suppose.

If I could afford a constant supply, I would consider weaning myself off medication and just using CBD oil, but I can’t afford to take it in the quantities that I’d need it.

There are only a few disadvantages that I can see:

  1. The cost.  It’s not cheap.  I’m not saying that it’s not worth it, but if you don’t have the money, you just don’t have it.
  2. it’s hard to get an accurate dose with a dropper.  I’ve considered using a pet micro dosing syringe but I don’t want to waste any because of 1.
  3. There have been no studies of the long term effects.

Have you ever used CBD for anxiety? 

I’d like to compare different methods of taking it, and brands. Which brands and types do you prefer?

I’d love to hear, either in the comments here, or on social media.

*not a sponsored post, just sharing my discovery.

 

.

17 Jun

Let’s talk about…Anxiety

fear

I bet you’ve heard about chronic anxiety and wondered what the big deal was? Even maybe wondered why people can just pull their socks up and get on with life? Maybe even contemplated that people with anxiety are putting on a show and should just get over themselves? A bit of stress is necessary in the workplace – I was told once – because it motivates you.

Have you ever been nervous about an examination or a job interview? We’ve all been on edge at some point in our lives. Most of the time we ride through that worry and come out just fine on the other side. In a few days we will have wondered what we were concerned about.

I’ve been like that too. That kind of worry, for the sufferer of chronic anxiety is really mild and hardly worth a second thought. I suffer from long term, chronic anxiety. I am going to try to describe my experiences to you.

I feel able to talk about it just now in my life because I have been given some new medication and I think it is finally working a little bit. I can talk again, after about maybe a year or terrifying ups and downs. I don’t even know to what extent my anxiety is linked to PTSD, because I’ve had rapes, abuse, and a prolonged period of stalking. I am Autistic, so the world places extra demands on my senses even when my brain is in a non- anxious state. I will talk about Autism, another time.

Anxiety it is not a short term thing. On a bad day, it feels as though the world is full of noisy TV static which is not only a noise but a feeling of intense fear. Colour is dimmed. A thick gloopy grey fog surrounds me. I can see no fog, but I can feel it and my body struggles to move through it, as though gravity is extra strong. The world around me vibrates and is distorted by this static noise-feeling and I struggle to focus on anything. I am lucky to have a good brain that takes me on autopilot for most of my daily tasks, but each task is exponentially more difficult and concentrating on things is super frustrating.

My body tenses up and feels glued to the earth or to the sofa – a kind of feeling similar to that which you feel when you ride a roller-coaster and the gravity pushes you onto your seat . I feel pushed to the sofa, or my back to a wall with some kind of a force. Like when you pull two magnets apart, it takes a real big effort to move from sofa to table, from room to room. Like that moment before the roller-coaster drops, and your breathing is temporarily interrupted, your heart skips beats, but the feeling never goes away.

On a better day I can beat the exhaustion that being in a constant state of alarm gives you, and I can appreciate my dog’s soft fur and the birds singing outside. On a worse day, leaving the house is like a terrifying game of beat the zombies where I just have to focus on my tasks and act normally so that nobody suspects that I am not.like.them. I have to ignore the fight or flight response that my brain has activated and hold it together until I get home. It will take me the rest of the day or even the week to recover.

It’s relentless.

Life shortening.

It affects the whole body.

And it’s very, very, tiring.

There is medicine to reduce it, but, it will always come back in the end.

I often wonder – if in a better society, one where we all had a guaranteed level of security (good healthcare, an universal basic income) in our lives – whether anxiety would decrease across the population.

Whether if I hid my Autism less, my anxiety would lessen.

If poverty and war were a thing of the past, would we all feel more secure?

So. Many. Questions.