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Anxiety Roulette


I want to talk about the power of anxiety.

I want to talk about how it’s not about a change in mindset.

I want to talk about how it’s not a thing you can easily control with thoughts and actions and practices.

I want to talk about how all the pep talks and encouragement in the world don’t always help. Sometimes they make things worse.

I want to talk about how the fight against anxiety is often a bad fight, a futile fight.

I want to tell you it’s not about attitude. There’s nothing wrong with my attitude.

I want to ask you please not to tell me not to worry, not to tell me it’ll all be okay, not to tell me I’ll enjoy it if I try, not to tell me I’ll be glad I did something, not to tell me “Well done” when I walk through hell and come out the other side, weak, dizzy and exhausted, with bits missing and reduced power.

I want to ask you to please not write me off either. Don’t think you know what I’m capable of or not capable of. Don’t assume I can’t or won’t. Let me decide.

I want you to know how much I love films and theatre and concerts and loud music and dressing up for parties and dancing and laughing and coming home late in a taxi thrilled by the feel of nylon instead of jeans on my smooth legs, and the soft fade of twenty perfumes around my head from all the familiar faces I kissed in greetings and goodbyes. I want to tell you how much occasion moves me and fills me with the joy of experience. I want to tell you how good it is to catch up with old friends and grin into eyes I love and to feel the energising give and take of a fond squeeze.
I want to tell you how beauty and being Out There, and filling all my senses with both new and familiar experiences and making a record of my life makes me feel alive. I want you to know I am fun. I am.

I want to tell you how, despite knowing everything will be okay and knowing my destination and my love for what I will be doing, that sometimes I hurt too much to see it through. That I hurt before I go, I hurt as I get ready, I hurt as I walk through a door, or leave the safety of our home or our car. I hurt when I see many faces. I hurt when I already know this isn’t going well. And on those occasions I will not be glad I went. And sometimes I will genuinely wish I hadn’t or be glad I didn’t just because I needed the pain to stop.

But instead, I’ll give you an example, and hope that will make you understand – or at least make you realise you understand less than you thought and that you need to understand more.

Yesterday we went to the cinema. I and three of my safe people. Safe people are people I can see whatever kind of day I’m having. In my case it’s my husband and children. We went to our usual, familiar cinema. I said what and where and when, and had booked seats in advance the day before and pictured where we would be sitting. I then got on with my life, pre-event. We went shopping and for a walk and I made dinner and did gentle yoga. I went to bed at a sensible time and I got up and did more gentle yoga. I showered and dressed in the usual way and got myself ready to leave the house. But anxiety had been waiting, and as I got ready, it began to hurt me. I felt pain in my chest, and by time we were in the car I felt pain in my upper arms. As we got out of the car and walked through town, I began to feel weak. This simple everyday event was something I should have felt entirely comfortable with, in theory, and yet I was getting all my usual symptoms of fear.
We met our eldest daughter and the four of us killed a bit of time before the film started but all the while I was looking forward to sitting down in the dark, and being out of this anticipatory phase.

The film was Bohemian Rhapsody. It was loud and entertaining and distracting. It tugged at my emotions, the music lifted the pain in my chest. I was taken back in time and really felt absorbed as music memories were triggered.
I am musical. Music used to play a huge part in my life. I was always singing, playing, performing, practising when I was young. Music always lifts me. Loud music that I can feel in my chest is medicine to me. I related to the quirky creative performer that was Freddie Mercury.

When the film was over and I was still high from the music, I talked about 1984 and Live Aid and the impression it had on a then 14-year-old me. My words weren’t formed properly and I stumbled. I think I got away with it because we were walking out of the building and I was up against other voices. But already I knew I’d exhausted myself.

At home we walked the dogs quickly as the sun set and I felt a strong desire to be still and do nothing but stare at the sky but we rushed home and I cooked the evening meal. My legs began to feel weak and my arms shook. No one noticed. It’s something I’ve had to hide all my life. I began to forget why I’d walked to the left to fetch a spoon or what I was going to do next. I can only explain this is a feeling of shutting down.

I felt dizzy. I felt weak. I felt symptoms commonly associated with hunger but eating didn’t make me feel better.

I didn’t help clear up after the meal. I went upstairs to change and collapsed on the bed. All the pain had stopped (although it’s back now for some reason) but I was left feeling absolutely exhausted. In theory though I shouldn’t have been tired.
The night before I had slept well. Really well. It had been my best night’s sleep of the year. I had absorbed the extra hour of the clocks going back and woken with a smile before doing yoga.

I am glad I did what I did yesterday. I don’t always know when or how much anxiety will strike. I don’t know how much it will affect my faculties. I do still want to plan and look forward to stuff and try to have fun. But anxiety is draining. It sucks the life out of me. If I do something small it’s bigger than your 2 activities, than your 3 activities. My trip to the cinema is bigger than your flight to Morocco or your 60th birthday party. I’m not entirely happy with that knowledge.

Today I will have an anxiety hangover and have to limit what I do and what I put my brain through. My husband won’t understand. Why should he? So I’ll just be slow and useless and boring and feel like a complete disappointment.

When I’m better I will plan something else.
And hope that anxiety can’t be bothered to play up. My trick of distracting myself sometimes works, sometimes it doesn’t. My trick of thinking ahead and making sure I know exactly how things will go sometimes helps and sometimes it doesn’t.
If anxiety does want to play I will have the usual choices:
Cancel?
Get as far as the event and either embarrass myself or run away or both?
Plough through the pain and hope the anxiety fades?
Go but regret it?
Spend the next few days doing nothing while my body recovers?
Get through relatively unscathed and be happy?

Maybe it will be worth it. Maybe it won’t.
I can’t call it. You can’t call it. But I’ll never write myself off or decide that I’m not doing anything again. I just have to pace myself.

So please don’t ever tell an anxious person they’ll be glad they did it. Please don’t tell me “Well done!” when I’m actually done in and uncertain. Each time is different and sometimes getting through was the wrong decision. The power of anxiety to trash events and lives is more complicated than you might think.

And please, please, please don’t write us off, don’t cross us off your list. We need things to look forward to and we need our capabilities noted.

Oh, and did that extreme exhaustion mean I slept well last night? Hell, no… adrenalin and cortisol poison my sleep patterns and haunt my nights.

Family. Familiar. Familiarity.

I’ve fished out my long pyjamas with the hare design: the familiarity is comforting, as is the super soft cotton.

Familiar habits and familiar objects reduce stress and provide immense comfort. I know I am not alone in this.

This isn’t just an autistic thing, it’s a human thing. (I do believe it’s likely to be more important to many autistic people though because the stress of processing a tonne of unfamiliar stuff is exhausting, and so something so totally familiar that one’s brain can take a rest is important.)

Ever since we went through the stress and upheaval of moving in June, the return of each familiar ritual, each familiar knick-knack, and each familiar kitchen item has brought massive comfort to us all. Last night we hung our old kitchen clock on the wall and it told me it was time to breathe. People keep coming back to fiddle with things like the electrics and patio windows and straighten things over the last couple of weeks, and there’s a small hole to fill outside and a new front door is on its way, and we’re expecting bedroom carpets on Friday so we’re madly trying to get ready for that but mostly we’re filling the space in a living rather than surviving kind of way and can keep popping back to our hired garage to fetch a cooking pot or glasses and other things that signal functioning domesticity and familiarity.

We’ve all longed to bring back things and bring back our ways. All of us. Home is about what you do and with whom you do it. Peace is an end to conflict, distress and disorder. So things that can bring back a semblance of a more settled past reduce trauma.

We have been traumatised, disorganised and unsettled. 2018 has, so far, shattered and scattered us – not scattered from each other but from ourselves and from our normality. The expression “my head is all over the place” has never been so apt.

On Friday 8th June we left our clean, bright former home with a huge bank of memories. As I dusted the last skirting board Rich got the call to say the house was no longer ours. This was the only home our youngest child remembered and where she grew from toddler to teenager. It was the home where I passed my degree, published a book, found peace, space and confidence to write and expand my knowledge and gained a little self-love and learned how absorbing myself in peaceful creativity was all I needed to fix my turmoil; where I learned blow-by-blow of my father’s terrible illness and death, then of my son’s terrifying head injury; where we put up family and guests over the years, and watched our eldest leave home and our middle child go from primary school to secondary school to college, to first car to second car to 21st birthday.

It’s where we took our eldest back in while she rebuilt her life and set up her own business.

It’s the last place I sat and had a cup of tea and a chat with my darling father.

It’s where my husband heard that his beloved father had died; where we went from young to middle aged and grey. It’s where we stood and listened to the neurologist give us the news we had begun to suspect about Richard over the phone. I can still picture each room I was in when each life changing phone call came in, and June of 2008 when I paced up and down on the patio, walkabout landline pressed to my ear, listening to bad news and more bad news as the most beautiful time of year took hold around me while horrors of our father’s leukaemia, treatment and pain poured into my ear is a memory of roses and footsteps, long evenings and sick fear.

When we first moved to that home, no one even owned an iPhone yet, Brexit would have seemed impossible, Prime Minister May highly unlikely and President Trump an absolutely incredible joke. No chance.

Pinochet and James Brown and Saddam Hussein were all still alive. Our mothers were still married women and not widows.

We’d created a flow and a rhythm and could get on with our lives because we weren’t distracted or disoriented by the unfamiliar.

There is something incredibly heartbreaking about taking a big old map of familiarity and cutting it up into small pieces in order to move house or initiate change. It is stonkingly painful and unnerving. It is particularly so when life is difficult and upsetting and you need that comfort.

When we walked through the front door as the new owners of Number 21 in June this year, it felt anything but ours. Someone had been a fan of fried food and fatty meats over the years in that house. Someone had been a smoker over the years. Someone had been abroad and been inspired by paint colours that better suited the Caribbean. The banister was sticky, the cooker was broken and filthy and stank of old, burnt animal fat that made me gag, the garden was no longer a garden but a hotchpotch of grey gravel, red and black brick, rubble and unusable outbuildings painted primary blue. The upstairs was a chaotic tumult of mismatched carpets, and the downstairs a cacophony of cheap laminate floor that cracked irritatingly under each step. It had looked okay when we’d viewed it but the harsh reality was that it needed tonnes of work doing.

No one seemed to have had a vague care about who would be entering that house once they left and our hands met grease and dirt on many a surface. Our youngest even woke to find old toe nail clippings on the floor on the first morning.

The impregnated memories of previous residents and thoughts of impending building work, combined with the exhaustion of selling up, downsizing and moving, on top of a Parkinson’s diagnosis and preparations for closing down and selling of a family business left us in what I have now come to recognise as Coping Mode. We simply talked practicalities, and monitored and recorded progress in order to survive. There was no way we could afford ourselves the luxury, at this stage, of discussing just how awful it was surviving in a small, foreign space surrounded by unfamiliarity, dirt, dust, noise, and other people’s, often offensive, smells.

The building contractor who followed our requests, organised the work, and hired all the subcontractors for all the jobs we wanted doing called our renovation project “A Challenge Anneka” (you’ll have to be British and over 30 years old to have any clue what that means…) but we felt supremely challenged ourselves.

I hate chaos, clutter and dirt so much it makes me squirm. I went to bed many a night with the windows wide open trying to ignore the taste and sensation of concrete dust and plaster dust in my mouth and nose. My senses are ridiculously highly tuned, and foreign objects – however tiny – scream at me. Life is a constant battle of trying to quieten or ignore those screaming senses at the best of times, but this was extreme. Foreign sights, foreign sounds, foreign smells, foreign tastes, and foreign sensations all around me began to drive me mad. And all the time my natural desire for cleanliness and a clutter free home so that my poor over-busy mind could rest and stop processing every damn detail, was being monumentally challenged.

Richard needs to eat regular, healthy meals, he needs to rest and recover from the extra exertion simply having Parkinson’s uses up and he needs to exercise regularly to keep his dopamine circulating. He needs to remember to take the right drugs and the right supplements at the right times. Just like me, he needs peace and periods of time when no one is asking questions or creating extra work or upheaval. We both began to find it difficult to attend to each other’s needs as we concentrated on our own survival. But somehow we did the bare minimum and we have survived.

Fortunately, despite being a much more built up area, the small strip of no-mans land between us and the modern houses behind our garden, the nearby river and the nearby Great Field mean that we haven’t lost bird song. The crows, seagulls, starlings, sparrows and pigeons are all here, and at night, when all is quiet and I feel I am the only person left in the world, I can hear a tawny owl couple communicating to each other.

I am learning the new soundtrack to my life, and learning to accept – if not quite filter out – all the new stuff. We haven’t quite created the right rhythm yet but at least it’s no longer a rhythm-free filthy chaos of unknown beats and crashes.

I think I will be traumatised by 2018 for some time. It will take me a long time to put the upset far enough back to live with it. I’ve come to recognise in myself how trauma doesn’t want to fade but wants to keep upsetting me and causing me ongoing pain. But exploring your own neurology can make you beautifully self-aware and able to accept moments of failure as human and just part of life.

I coped. I had mini failures and I will continue to. But I coped. We coped. And this too will fade into birdsong. Eventually.

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