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Placing my pain – or how I’m learning to say “ouch” in all the right places!

In my previous blog Saying “Ouch” in all the Wrong Places, I describe our sense of interoception and how my sensory processing differences result in my brain receiving very muted signals about what I feel inside my body. The blog gives some examples of how this manifests for me and the challenges this creates when attempting to describe medical symptoms and access appropriate medical support.

Today I visited the dentist. Dental appointments would have been unthinkable when I wrote that earlier blog, but with support over the summer, I have had several visits to the dentist, requiring x-rays, a tooth extraction and follow up treatment for ‘dry socket’. I went back today because I was experiencing symptoms of severe pain.

Note that I state experiencing “symptoms” of severe pain and not “experiencing severe pain”. Whilst my muted interoceptive experiences have remained similar, my understanding and acceptance of what they mean for me has changed considerably.

Sensory processing:

Each of us experiences pain differently. It’s common knowledge, and we often attribute unhelpful value judgments to people’s experiences of pain. The way that our brain processes the signals that come from our body is unique for each of us. It is dependent on the context too, and can fluctuate. This is accurate for all people, but Autistic people and those who experience sensory processing differences for other reasons, may experience sensory information in different ways. Not just internal body signals; but noise, taste, touch, smell and visual information too. We may experience sensations intensely, or they may be muted. Sensory information could be distorted or fragmented, or take a long time to process.

My personal experience of pain tends towards not noticing it until the sensations are very strong. This is not because I am some brave superhero – it’s just how my sensory processing system works. My brain requires lots of interoceptive sensory information to register something is happening. Conversely, my tactile processing system needs only a tiny bit of sensory information to register with my brain and I can incorrectly appear to be oversensitive to labels in my clothes, or having wet hands for instance.

How I experience pain:

Just because I may not have a strong awareness of something in my body hurting, doesn’t mean I am not in pain. If a medic asked me to use a pain scale to rate the severity of my toothache this morning, they would have been met with a puzzled look and a “I’m not sure….It’s not too bad, I suppose” – I certainly could not have attributed a number between 1 and 10 to indicate how severe it was. In fact, the stress of trying to define what was wrong and where in my body that sense of something being wrong was located, could have pushed me into complete overwhelm. But I was in pain – only I didn’t feel it in the conventional way.

On Saturday I recognised a change in my mood that was not related to any circumstances or life events – in fact I was having a great day with lots of absorbing activities to occupy me. I found I could not regulate my sensory processing system – and as someone who is proactive in sensory regulation and incorporates it as part of my lifestyle, this concerned me. It was dramatic enough to make me realise that something potentially serious was going on; and because I have an awareness of how I experience pain and illness, I explored whether it could have been caused by pain.

I scanned through my whole body, inch by inch; noticing whether I could detect any sensations, or none at all.

I tried to put my “something is wrong” feeling into words but couldn’t. So I didn’t push myself.

I distracted my mind from disappearing into my black mood in search of why “I” am so wrong, and brought my awareness back to my body. This required a huge leap of faith on my part as I have experienced extensive negative feedback from professionals about my insights into my own needs. However, I know myself well and there is little to be gained by stressing over whether I will be believed or not – or whether I am making a fuss about nothing. My dysregulated sensory processing system and my distressed emotional state that could not be regulated by my typical everyday self-care, told me that I was most likely unwell or in pain.

I checked I did not have Covid-19 and my lateral flow test was negative. I tried to notice any symptoms, such as a runny nose or a cough, or limbs that were an unusual shape, but couldn’t detect anything of note.

I considered the type of negative thoughts I was having and rather than challenging them or getting drawn into them, I stood back and wondered what they were trying to tell me…

Noticing where my pain is:

Using my skills in logic and analysis, observations from years of supporting people who communicate without talking; and combined with past knowledge of myself, I considered I may have toothache. I had needed dental treatment in the summer, so this seemed a strong possibility.

I examined my mouth and face in more detail. I noticed that if I touched my jaw I felt slight pain. I looked in my mouth but saw nothing that indicated swelling or infection. As the day wore on, and into the next day I found that I noticed slight earache as well as the sensitivity when I touched my jaw. It was as if the overwhelming and widespread feeling of something being wrong was settling in one place. The sensation was certainly not pain that could be classed as severe, but I recalled how the abscess that had required a tooth extraction in August had created similar mood changes and sensory dysregulation in my body.

When I visited the dentist in the summer they tapped my teeth and explained that if there was a problem I would soon know! I did not react with a typical pain response but the x-ray showed what they referred to as a pathological cyst. When I viewed the x-ray back in the summer, it enabled me to place my pain in my body, and my mood symptoms lifted, I was more able to regulate myself and I began to notice my toothache and could treat it with painkillers.

I decided I would telephone the dentist on Monday morning. I pushed aside my anxiety about making a fuss and made a plan. I knew the dental receptionist would ask if this was urgent and would qualify that by asking if the pain was so severe it was keeping me awake. This line of questioning delayed my treatment in the summer because I answered honestly and said “no”. However, I realised back in the summer that I was incorrect with my response of no. The pain was preventing me sleeping because I was having nightmares, distressing thoughts, and panic attacks. These symptoms that are typically associated with mental illness are closely linked to physical illness in my case. My nights have been disturbed for some weeks and although I have not had a sensation located in my mouth that has kept me awake, the pain has kept me awake by manifesting in other ways.

The receptionist was accommodating and listened as I explained that my pain was as bad as it had been in the summer. Fortunately I could have an appointment later that morning with the dentist who knew me well. I have very specific support needs when visiting the dentist and was relieved to be seeing someone who knew me.

My appointment resulted in confirmation that my cyst was still there, in the same place and the same size. The extraction and weeks of antibiotics had not healed it. Further treatment is booked and I left feeling reassured.

Conclusion:

I am learning to trust my own knowledge of how my body works. This is no easy task when my life has been filled with invalidating comments, disbelief and failure to address my needs.

Some people work hard to identify sensations in their body and name them “correctly” and describe them so they fit mainstream expectations of how bodies work. I feel no need to do this. I prefer to develop my self-knowledge and accept this is how MY body and brain works. I would like more people to accept the way my body works is “normal for me”.

At times it may be helpful to frame my experiences in ways that clinicians accept and understand, in order to receive timely and responsive treatment, but I do this purely for that reason and I would love to be able to use my own language and lived examples, and be taken seriously. Sadly, if I explained I had mood symptoms and thought it was actually toothache, I would likely be seen as neurotic. I get better treatment by stating I am experiencing symptoms of severe pain. Those times when I am unwell or in pain are not the best time for changing attitudes!

Locating the pain reduces the risks that come from being so dysregulated. It also enables the pain to be treated.

It is interesting to note how once I have located where the pain is likely to be, I start to feel it slightly. When the location is confirmed by x-ray or other tests, it begins to hurt more. The overwhelming sense of not being ok that fills my body, condenses into its correct place. Clinicians can really make a difference to people like me by listening with interest and without judgment. Learning to explore your whole body and notice anything different can be useful too. I have used mindfulness for decades and find body scans help me. Pain scales are not a good indicator of severity of pain for some people – what is more useful is having trust in the person’s ability to notice that something is not right for them – and then support them to explore it.

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Why I love motorcycling…

Riding back over the mountain earlier, a pair of Red Kites swooped down low in tandem in front of me and majestically soared back up high into the bright blue sky. I was close enough to see their individual talons and notice whether either had a tag on its wings. There is something about the solitude of motorcycling and being in the scene rather than observing it from behind a windscreen that makes my heart soar, like those Kites, every time I ride.

Not one of the Kites I saw on my ride today, but one from at home in my village. I have written about Red Kites in my wildlife blog http://www.offdowntherabbithole.org

My love of biking was sparked as a child. I spent those long school summer holidays wandering around on my own, down on the beach or in the park; or maybe I’d cycle the 15 mile round trip on my pushbike, to Brean Down, a local beauty spot sticking out into the Bristol Channel. I’d climb along  to the old fort where I could hide and watch the rabbits and avoid the wild goats! (wild? – these were genuinely absolutely livid, and I felt like I took my life in my hands every time I ran the gauntlet through these hairy, horned, feral beasts). I’d make sure I was home in time for ‘Junior Kickstart’ though. This was a 1980’s British TV show and an offshoot of Kick Start – a televised trials bike competition where competitors would skilfully make  their way around and over various obstacles as quickly as possible without touching them, knocking them over or putting their feet down. I can still sing the theme tune 30+ years later – along with the revving engine noise at the end!

I had to make do with bicycling when I was young. We lived in a semi-detached house in a town and there was nowhere to ride an off-road bike. And furthermore, it would not have happened because I was a girl. I wasn’t a typical girl mind. I asked my mum what I was like because I know I never played with dolls or wanted other popular 1980’s girls toys, like a ‘Girls’ World’ – in fact I found the idea of having a severed head (albeit a plastic one) in my bedroom that I could apply make up to and do its hair, quite repulsive. I did have a Cindy doll – I cut its hair off and knitted it some survival clothes for having outdoor adventures in, like being lost in a jungle or stranded on a desert island. My favourite things, according to my mum, and she was absolutely spot on; were reading and cycling. I would get on my bicycle and disappear off for as long as possible, not considering the fear I instilled in her by cheerily recounting how I’d cycled to the next town along the main road and then climbed a hill or gone looking for creatures in the sand dunes. I was an extremely accident-prone child and had a tendency to go off in pursuit of whatever it was that took my fancy that day, with no consideration for safety or telling someone. There was no way I was having a motorbike.

I had my first ride as a pillion passenger on a family friend’s motorbike. I remember how it felt sitting on the back and the pull of the various forces working on my body as we accelerated. I knew at that moment; I would have to have my own motorbike someday. It was all the fun of bicycling but with this added ‘something’.

When I was 18, I bought a moped. An orange Suzuki FZ50. I lived in a town near the Quantock hills and I’d ride up there and wander around, enjoying the solitude away from the busy streets and the flats where I lived. I loaned that bike to a ‘friend’ – well it was someone who lived in the flats who I hung out with. They disappeared off on my bike and I eventually found it dumped and broken. I saved up and bought a Honda step-through – one of the most popular motorcycles in the world ever. The classic C90 in red, with fairing, top box, leg shields – the full works. This bike wasn’t a ‘twist and go’ like the moped,  but had 3 semi-automatic gears where you pushed the gear pedal to engage in a gear but without the need to hand operate a clutch lever. I used this bike for my daily commute to college and it ate up the 13 mile journey easily. However, I had decided that travelling to Taunton every day was tiresome and I was offered a room in a shared house belonging to someone on my course and I moved in. I was riding back to my new pad one evening and a young man shot through a red light and I hit the side of his car at 30mph and tumbled over his bonnet onto the road. We agreed to settle this privately and he gave me enough cash to buy my first proper motorbike; with manual gears, a kick start, and trail bike styling – I was about to realise my ‘Junior Kick Start’ dream with Honda’s XL100.

Up until this point, I had motorcycled alone, much like I did most things in life. One night in January 1994, with my arm in a sling from the aforementioned accident, I turned up at a friends’ house. John, Chris and Matt were guys I knew from my old town and had also moved to Taunton and were at the college, and they had planned a night out. Did I want to come along? I decided to give it a try and when I arrived I found that everyone had brought something to drink before heading for town. I’ve never been good at ‘getting’ this type of social etiquette and I looked around the room and asked whether anyone wanted to go halves with me on a bottle of red wine from the off-licence. This one guy said he did and we went off in search of alcohol. He asked me about my injury and we got talking about motorbikes and never really stopped talking about them for the following 27 years we spent together.

I hadn’t taken my bike test at this point because I had a full car licence and you could ride on L-plates with that. I decided to take  my CBT and test, and passed first time that April. My first ‘big’ bike was the little Kawasaki Z200, that I sprayed matt black. It was a lovely bike and took me on all sorts of camping trips and to rallies and eventually when I moved to Bristol for University, it lived in my front garden and was used for getting around the city. I used to ride to West Wales where my partner had gone to pursue his studies in Lampeter. I discovered the joy of having long rides – and my goodness, everything feels like a long ride on a Z200! I had read Robert M. Pirsig’s Zen and the Art of Motorcycle Maintenance and my head was filled with tales of the open road and philosophy. I still have a copy of this book on my bedside table and I’ve re-read it at various points on my life and I always find something new that resonates with me. Pirsig was an extremely intelligent, articulate man who experienced treatment with electroconvulsive therapy back in the 1960’s when he was diagnosed with schizophrenia. Every time I read his books (Lila: An Inquiry into Morals further explores the concept of quality started in Zen and the Art of Motorcycle Maintenance) I reflect on how similarly we see the world even though we are world’s apart. I would have loved to have a conversation with him about so many things – I’d love to know his thoughts on autism.

Although I enjoyed riding as a pillion passenger or having a try of friend’s bikes and riding along with them, I never fancied joining a club or gang. It wasn’t just my gender – although I must say, most images of biker girls do not show appropriate safety gear in my opinion! I have just never been part of any ‘scene’. When I moved to West Wales there was quite a few bikers. Lots of students, a local MAG (motorcycle action group), a back-patch club on the coast and a NCC (National Chopper Club). There was a MCC around Lampeter at that time but I’ve always been put off joining any clubs. The back-patch MC clubs are generally male only (there are a couple of female MC’s) and the MCC’s have never appealed either. I rode around and lived a simple life and I hung out with other people occasionally and life was good. I had spent a good few years by this time with only two-wheeled transport. I had a full car licence but no car and I rode my motorbike day in, day out. Whatever the weather and wherever I needed to. I rented a converted barn in the middle of nowhere and had no electricity and only spring water. There was no road and the track was just about passable, and allowed me another taste of my ‘Junior Kickstart’ trials riding experiences. My favourite ride was over the hills to Lampeter and on a fine day I’d take off my helmet and ride along the ancient roadway, wind in my hair and a song in my heart.

I’ve never been one for fashion or dressing up, and motorcycling suited me for that reason too. I wore my bike gear all the time. No tough decisions on what to wear each day, no not knowing whether I felt comfy or not – I was always comfortable, my bike gear moulded to fit me and didn’t have to be washed so never smelt ‘wrong’ or felt itchy. It also suited living in a barn with no electricity where we relied on a rayburn and gas lights and candles. I’d ride to town and carry home a week’s worth of shopping in my panniers and rucksack, and strap a sack of coal across the saddle.

1994 on my Kawasaki Z200. I rode in all weathers, hence the ex-army parka

I opened by describing how being ‘in the scene’ rather than observing, was so important to me. Thank Robert M. Pirsig for that one. Riding a motorcycle is an incredibly ‘in the moment’ type activity. I have practiced mindfulness for a long time, and had an interest in meditation, and philosophy, and science for even longer. When I ride, I can only think about the present: I can wonder, and explore ideas, and contemplate and muse; but I rarely reminisce, or worry, or replay past events or plan for the future. You have to be present because you are on two wheels and travelling at speeds of up to 70 mph (or whatever the legal limit is). If you are not totally and utterly focussed, it is likely you will have an accident. Plus, why would you want to miss a single minute of that wonderful feeling?

So what is it that is so fantastic about biking? For me it’s not the lifestyle, I’ve never been one for conforming to any type. Although, the camaraderie is like nothing else. This morning I know that every biker that raised their hand to acknowledge me, had that look in their eye, and probably a smile on their lips that said “This is fantastic isn’t it?!” I’ve always felt accepted by other bikers, my autism doesn’t even seem to register because it’s about what we have in common not what our differences are. I’ve met lots of different people who ride bikes and I’d say that many of them would be seen as eccentric or non-conformist. It’s fine to meet a biker you have never met before and launch into an enthusiastic tirade about your ride, or their bike, or ‘did you just see that idiot pull out in the Volvo?, or even the cake you just had with your cup of tea. Small talk doesn’t seem necessary and this aspect of biking has always appealed to me too.

The most significant part of biking now makes more sense to me. I’ve always recognised there was ‘something’ going on, on that very first ride as a pillion passenger. Motorcycling affects every one of my senses in a most intense way. It is the most holistically satisfying activity ever. It regulates my emotions and senses like nothing else. Harley Davidson and the UCL have recently conducted scientific research into the mental health impact of motorcycling and the findings showed that the benefits are more like those of exercise (reduction in stress hormones etc), rather than being similar to having a drive in a car. Any biker could have told you this! I’ll describe how motorbiking effects my senses:

Vision: There are so many styles of motorcycle to choose from. I’ve owned and ridden all sorts, the machines I’ve described in this blog and many more besides. I do like a trail type bike personally. I like to sit upright and be high up and get a good view over the hedges. My latest bike is an Aprilia Pegaso Strada – a kind of adventure bike machine. Bikes are beautiful to look at and Mal and I sat just staring at his Enfield bullet and it’s wonderful mechanical simplicity and style.

Smell: Who doesn’t love that smell of hot engine, petrol and oil? It is the most satisfying smell to open your garage door to.

Auditory: I love a big single cylinder engine. I had an XBR500 café racer style Honda before the Aprilia and that too had a wonderful slow, deep, thump of a big single cylinder motor.

Touch: The feel of wearing clothing that is solid, fits well and has no fancy bits to irritate me is great. I love the sensation of sitting on the bike and being able to feel things with the extremities of my body. The clunk of the gear pedal, the twist of the throttle and the wind in my face.

Taste: It isn’t a proper ride out if you don’t have chips or a cup of tea and cake! I could write a book called ‘Around Britain by cake’. Whenever I recount a past ride-out I’ll always remember where we stopped and what we had to eat there. Food just tastes so much better when your senses are switched on by the joy of riding.

The next 3 senses are the ones less discussed outside of autism circles. These are the important ones for me though when it comes to motorcycling:

Vestibular: This is the sense of where your body is in relation to gravity. This is the sense that biking really excites in me. I like speed but I prefer acceleration. That pull and push of speeding away from a standing start just gets me going every time. When I am moving, my clumsiness disappears, and I can judge speed and distance in a way I just can’t when not on the bike. The forces working on my body as I travel switch something on in me that lasts much longer than the ride itself.

Proprioception: I mentioned my clumsiness and if you saw me off the bike you’d probably advise me that motorcycling is not for me! The clothing helps give me a sense of where my body is in relation to itself. I feel sensations in  parts of me that I didn’t know existed otherwise. Having recently taken up riding again after a break, I realised that the vibration of riding and the repetitive movement of using my hands on the clutch and brake levers give me a sense of where my forearms are. I’d forgotten I had forearms to be honest and I frequently have bruises around my wrists where I knock things because I don’t notice in time. I need to put a lot of movement into my arms to notice them – I wonder whether that is why certain repetitive movements involving shaking or flapping your arms are so common in autistic people? The vibration (that favourite big single-cylinder engine again) gives me a sensation throughout my body. It’s neither pleasurable nor uncomfortable, it just seems to vibrate everything awake and I know where my body is for ages after a ride. I have certainly been less clumsy during those periods in  my life where I rode daily.

Interoception: This is the sense of knowing what you feel – whether that is bodily functions like being hungry or your emotions. I have weak interoception and motorbiking awakens a pleasant feeling in me. It’s not a strong emotion, it’s more an inner peace where I know I’m ok, I know I’m contented and I know that I am part of the world.

This is me earlier this week with our son riding pillion. He is 14 and has an off-road bike he is learning to fix and ride.