If you press ‘sample’ you should hear me reading the Introduction (fingers crossed 🤣)
I’ve had my fair share of hospitals and major operations over my lifetime. So faced with another, life-changing op, during Covid, I felt relatively confident of coping.
I was advised by the autistic online community to inform the hospital that I was autistic. And how autism might affect me in hospital. I read all the information and blithely thought – I’m in a private room, surely it’ll be fine?
However I’d somehow forgotten how much previous coping had been due to massive support from my partner, family and friends.
Under stress I tend to shut down in both major (plummeting blood pressure) and minor (mutism) ways. Worse, I simply don’t hear what’s being said. Shouting makes everything impossible, it terrifies me. For instance, during labour with our three babies I shut down. I could only follow my partner’s quiet, encouraging instructions.
So! I was anxious this time, but I read the hospital’s info on the process and prognosis. And I felt confident about saying I’m autistic and get very anxious. Everyone smiled, “Don’t worry, everyone gets anxious. It’ll be fine”…
Followed by new, scary-to-me information like, “You must sleep on your back for at least 6 weeks / wear sensory hell surgical stockings for 12 weeks / be on a strong drugs regime despite a history of bad reactions”.
Do non-autistics somehow know that initial info is just a vague guide rather than definite? Or do they just cope better with new info? Without my partner’s support I just panicked. I wanted to run away. I didn’t, I froze and became silent. Tears poured down my face. And everyone was jolly and tried to reassure. By now I was way beyond that.
And so a three day stay turned into much longer because I couldn’t say what was the matter. My terrifyingly low blood pressure meant people shouting (‘Stay with us!!’ ‘Talk to us!!’) then endless monitoring and an oxygen mask. I could neither eat nor stop crying. By now I would have welcomed death.
Eventually I was allowed home where my partner was infinitely gentle, infinitely kind. I began to improve physically.
The emotional scars will take longer. When I see the surgeon (a genuinely nice bloke) I’ll take the Autism and Hospitals document provided by @autisticdoctor and give details of how a seemingly competent person was devastated by the lack of usual support.
I absolutely understand the need to exclude visitors from hospitals during Covid. But do we need to somehow reassess this where there is autism or learning difficulties?? Life saving / life changing procedures are incredible things – no-one would deny that. And NHS or private hospital staff are working brilliantly despite being under appalling pressure. What I’m questioning is: What if the mental cost of no extra support, to those who rely on it, is long-term PTSD?? I don’t know the answer. But I do know we need to make those who are in medicine aware that we are not average patients and the accommodations we need are vital to our health outcomes.
Otherwise it feels like screaming behind soundproof glass…
Panic in the time of COVID-19
Everyone is adding to positivity as best they can at the moment.
The thing I know best and can offer, from years of studying how bullying works and how to defuse it, is that feeling bullied by anything at all has exactly the same effects on our emotions and our behaviour as if someone was deliberately horrible about us.
And most of us probably feel bullied in this way by the threat or reality of COVID-19….
In order to help us cope best with this, I have to do a really quick bit of biology so that what I suggest will make logical sense to you!
You have a brilliant nervous system to keep everything going and, importantly, protect you if you’re threatened. It’s in 2 parts. (Bear with me, I’m going to keep it really simple!!)
- Your sympathetic nervous system:
- When you’re under threat this will direct oxygen (energy) AWAY from your brain and into your muscles for… you’re ahead of me here… fight or flight. Brilliant!
- Your parasympathetic nervous system:
- Once the threat is over, this calms everything down again, you breathe deeply and oxygen goes again to your brain (and other things, like your digestion).
The difficulty is when we get stuck in the fight or flight bit!
So here are two exercises to get your parasympathetic nervous system back working at its peak and doing its job to calm you down!
- Sit, stand or lie down comfortably.
- Think of a colour that makes you feel brave. Or happy! (Mine varies from day to day – sometimes it’s a deep purply-red, sometimes it’s stripes of orange and yellow!)
- Breathe your colour or your happy thought way down… deep into your stomach.
- Now breathe it out AS IF it was going down through your legs and feet… and through the floor… and imagine huge tree roots grounding you… until you completely run out of breath!
- Gasp! And breathe normally again.
- Repeat again… and then as often as needed through your day.
What’s happening is that your body automatically took a huge breath after you breathed all the air out. So, your parasympathetic system is now back working as it should… And now oxygen has got back to your brain again, you will feel a whole lot calmer and able to think again / go forward. Phew!!
Next, we’re going to look at a bit of brain function that also normally is very useful. This is to do with your brain’s ability to make faster and faster connections to something you think about lots. So, if that’s, say, reading, clearly the more you do it the quicker it becomes.
But what if you’re panicking about COVID-19 and how you’ll keep your children safe? In this case what happens is your brain ties your children’s safety to your inability to keep them entirely safe. And every time this fear comes up, your brain is strengthening connections over a situation you cannot completely control (Those I love = COVID-19!).
The next exercise is designed to get you feeling more in control to stay more positive and thus more effective, especially if you’re worried about others.
- This time either sitting or lying down.
- Set a timer for five minutes and…
- Do your breathing exercise a couple of times first.
- Next, imagine a place that makes you feel safe or just plain happy. (Snowy mountains? A wild flower meadow, or a dappled wood? A golden beach with the sound of the sea? Whatever you like.)
- Just concentrate on that place for a couple of minutes… Your worries might sense a gap and try to flood back but just calmly bat them away for now. You are making new connections.
- When your alarm goes, come to slowly, and get on with your day again. Even if it’s brief, you are back in control and more importantly, you’ve broken some of those scary connections.
- Repeat as needed.
Doing either or both of these with your kids too! Useful for when they’re feeling bored or before bedtime?
I know none of this takes away the real danger or anxiety over ourselves and all of those we love.
But it does help us to be more effective, and understanding of what everyone is struggling with.
I send you my love, virtual hugs, and a slice of my finest lemon drizzle cake xx