Stuffed eggs and school: a post for Anti-Bullying Week

“Eating, and that feel of food in the mouth, is all part of comfort and affection and warmth, and I think that a lot of the reason that I turned to food was because I was actually quite a lonely child.”

Nigel Slater

It might not come as a surprise to learn that my earliest memory of school involves food. Stuffed eggs, in fact. [The link goes to a recipe for devilled eggs as I can only find one that is actually called ‘stuffed eggs’ – see below.] The memory is blurry, but there was definitely hard boiled egg and salad cream involved; the egg being chopped into little bits and mixed with the salad cream and then…what? Stuffed back into the egg? I guess so. As the cooks were five years old,  I don’t imagine there was any mustard or paprika involved, as is the case with actual devilled eggs. There may have been chives, but I could have imagined that.

[Aside: while researching recipes for stuffed eggs I found an interesting site about medieval cookery. Worth a look – and contains the only reference to stuffed eggs I could find. My favourite version of the medieval recipe for stuffed eggs is this: Source [Liber de Couina (Medieval Kitchen #118)]: Eggs: to prepare for stuffing. To make stuffed eggs, cut each one in half when it has been well cooked and [is] thus hard. Then remove the yolk and take marjoram, saffron, and cloves and mix with the yolks of those eggs; and mash it thoroughly, adding a little cheese. For each eight eggs, add one raw egg. This done, fill the egg whites with this mixture. And fry in good pork fat, and eat with verjuice. Mainly because I like the sound (literally and metaphorically) of verjuice.]

After this, my next memory of school is being knocked over by a bigger child running in the playground (I mean they were running, not me). I was just knocked over and fell down the steps, ending up with, ironically, given my previous anecdote, a lump the size of an egg on my forehead. Fun times. As you may have gathered, I wasn’t a massive fan of school. But the problem wasn’t the schooling (apart from PE, which I saw as pointless and just something made to showcase my failings and the other children to bully me/laugh at me as appropriate. The problem was the other children.

I spent my school days avoiding all the children I was scared of, and having my learning interrupted by teachers having to deal with kids who didn’t want to learn. Things got better in the Upper Sixth (I am old – this means Year 13), when the kids who didn’t want to learn had finally escaped, but the bullying didn’t stop. Human beings are, after all, animals, and animals attack and/or reject any one of their kind who is different, it’s just animal logic/instinct. I remember, at my second primary school (we’d moved house) looking at the other children in my class and wondering what it was like to be them, to be normal. I think I was about seven years old at the time.

Not being seen as ‘normal’ makes you feel something other than normal – it’s a bit of a viscous circle, as many things seem to be. As adults, most people learn that there is no such thing as normal, and that maybe normal isn’t something we need to strive for, and even that it might be a good thing to be a bit different to the rest of the pack. But children, and, I suspect, some (most?) adults, don’t have this insight. To them, there is a normal and a not-normal – the dreaded word ABNORMAL. At least we don’t use ‘subnormal’ anymore, at least not in polite conversation. The normal children look a certain way, have the same(ish) physical abilities as everyone else and something else. The not-normal ones are the ones standing on the edge of the circle, in cliche of on the outside, looking in – often literally and always metaphorically. 

“…her memory is of an intense humiliation about being different, a shame she took upon herself”  

Kate Bull, Open Hearts

When I read this, I thought yes, it is a shame and humiliation. You feel this yourself and then other people make you feel it even more. Once, when I think I was about seven, a teacher asked me if I wanted any help using a pair of scissors. I was quite taken aback, as I was perfectly capable of using scissors on my own. In my young mind I thought she was asking me if I needed help with the scissors because of my heart condition, and I felt embarrassed about this, like it was an insult to my intelligence. Thinking this made so sense at all, really, but I think I associated my heart condition with not being able to do things, and I felt that the teachers did, too. Being intelligent was (and, I suppose still is) important to me, because I felt it was my one strength (and I still do, to a certain extent although now of course I don’t think myself as clever as I did when I was six).

I was…unusual…in ways that weren’t obviously anything to do with my heart condition, ways that I now think were early signs of being autistic. I was very slow and changing for PE – even into high school, I could never learn to swim, I was massively anxious about many things, particularly people pushing me or being too near me, being hit by flying objects (balls), couldn’t skip,couldn’t climb, couldn’t skate, couldn’t jump off or on to things, had no balance and little coordination. I often felt that I was the only one who couldn’t do things – it happened a lot – forward rolls, plaiting hair, skipping.

I preferred to talk to the teachers and dinner ladies rather than other children, although I did have some friends. I had trouble with ‘frenemies’, though – although the word hadn’t been invented yet. One particular ‘friend’ at primary school apparently used to bully me – although I can’t remember any of it, my mum noticed and ‘had a word’ with this friend’s mum (I don’t remember that either). I was a bit ‘forward’ with adults – people said I was cheeky, but I just talked to them like they were my peers. A lot of my social life, such as it was, was with adults – I sang in a church choir and later in a choral society that was mainly made up of people my parents’ age or older.  I went to Brownies but I didn’t like the other girls and they didn’t really like me either as far as I could tell, so I didn’t move on to Guides.

I accepted my lot  – in a way it seemed logical to me that I would be bullied and left out and feel different. I was different, there was no point me making a fuss about it – everyone else was doing enough of that. I accepted that this was the way of the world, that I was going to get bullied because I was me, I suppose. That was my childish logic – my adult logic is that it’s human nature to ‘other’ people – people fear difference and are afraid of being different themselves, so in turn they try to ostracise the other, I suppose ultimately they want us to go away and stop messing up their normality. Is that really it?

Anyway, it’s Anti-Bullying Week this week, so go and learn about it and give your support to the Anti-Bullying Alliance. I live in hope that one day people will be more tolerant of those who are different – and I think in some ways, things are better than they used to be, but there is a long way to go yet.

Just the way it is

In The Wounded Storyteller, Arthur Frank posits that people show that they still love their bodies, despite the failings of  these bodies, because they accept or pursue medical treatment. Passively or actively, they show desire for wellness and to do something ‘for’ their bodies. If there was no desire for a healthy body we could say that this person does not love themselves enough to even try to get well. But Frank also points out Broyard’s idea that some people seek out or accept medical treatment because they feel it is ‘the right thing to do’ in terms of following an expected pattern of behaviour (ritual) or rule following. In this case they are mostly concerned with being seen as going through the ‘correct’ process rather than any real desire to become well. These people do not seek treatment for love of their bodies, but only wish to do what is expected of them – they are passive, rather than active in this situation.

As far as I can see, the reality is, most of the time, there isn’t really a choice. It’s either have this done to you or you won’t get better, in the case of treatments/surgery / the doctors won’t have the information they need to help you get better, in the case of tests. So I’m not sure that ‘choosing’ to have medical treatment/tests is either a case of loving the body or rule following; it’s just the way it is.

Apotheka pharmacy sign
Photo by Mika Baumeister on Unsplash

Aliens

I think there is a burden of responsibility for children and adults with congenital heart disease (CHD), which is related to the idea of ‘heart warrior’ or ‘sick person as hero’. We feel a duty to be/act as normal as possible now we are ‘fixed’ by whatever surgery or treatment we may have had and back in society/back to school- back to a ‘normal life’.

Sandeep Jauhaur, in his book Heart, relates the story of Jacqueline Johnson, who, in 1952, was the first person to have “hypothermal treatment” (cooling down the body to hypothermic levels in order to slow down the heartbeat enough so that the heart can be operated on). He ends the narrative by saying, “By the end of the month, she was just another girl at school”.  Jauhaur shows no thought for  the girl’s feelings or aftereffects of surgery. Jacqueline is never going to be “just another girl at school”. Even if she appears that way to her parents, doctors and even her peers, I seriously doubt that she would have had no psychological reactions to her surgery, or that she would not have been seen as ‘different’ by her peers and treated as such when she returned to school. It is possible to do ‘normal’ things with CHD, but, for better or worse, your outlook on life is probably not going to be the same as the people around you.

[missing school and being slow] “served to underline in some young minds that there was something fundamentally ‘wrong’ with what they were” 

Kate Bull, Open Hearts

Somewhat miraculously, I didn’t miss a massive amount of school, but probably more than most of my peers.  Almost every cold would turn into a chest infection, which meant days of lying on the sofa, taking lots of antibiotics and having physiotherapy on my chest – this latter involved me lying tipped sideways over on a heap of cushions and my mum slapping on my chest to try and loosen the mucus in it so I could cough it up. Yes, it was as tiresome and disgusting as it sounds. When I got better enough to go back to school my mum would come into school at least once a day and do my physio in the medical room (I think it was). I don’t know how she managed this, as she worked a lot when my brother and I were school age. But she did. I found it boring and annoying and obviously it did nothing for what little street cred I had. No, actually, I didn’t have any to begin with so that probably only mattered in my head! But I was slow. I was the stereotypical ‘weakling’ kid – the one with no coordination whom no one wanted to pick for their team. I still look back in some dismay at the fact that the teachers actually let pupils pick sides for games – it was an utterly humiliating practice for anyone who wasn’t good at sports, or unpopular or, you know, me. I really hope they don’t do things like that anymore. 

In any case, all this being different does make one think there is something wrong with what one is. People are basically telling you, either kindly (medics, parents) or cruelly (school bullies), that you are not the same as everyone else, that you are ‘other’. I think it is only a short step from there to self-doubt, low self-esteem, low self-efficacy, and at the worst end of the scale, self-hatred. And then if you add in the lack of attunement/attachment experienced by babies and young children with CHDs, it doesn’t paint a very happy picture. 

In their study Cornett and Simms (2014) found that, for adults with CHD, “The desire to have a ‘normal’ life was profound”. There are some pretty heartbreaking quotations in their article, from patients like George, who said:  “I’ve always felt I’m faulty, I don’t fit in…you’re an outcast…I’ve always felt like a reject”.  I have to say, George does a good job of expressing how I’ve felt on many occasions during my lifetime. It is something I haven’t really talked about with my parents or friends, apart from saying seemingly silly things like ‘I think I might be an alien’ – but at times I really mean this. Actually, most of the time. Again, I realise this sounds dramatic; ridiculous even, but the feeling of alienation for people with any chronic illness or disability can be this severe. “…[T]he patient’s perception [is] that their world is at conflict with that of their healthy peers” (Cornett and Simms). 

“…a transformation of the essential conditions of their being in the world. They have become aliens, even exiles in their own land.”

Robert F. Murphy, The Body Silent

It wasn’t all bad. I was secretly glad of some of my differences. When it was very cold, I didn’t have to go outside at playtimes. This meant peace and quiet for me and no need to try and join in any boisterous games or spend the fifteen minutes avoiding projectiles – footballs: I hated them. And of course, not having to do “the run” was a bonus. “The run” was a PE lesson we had at secondary school (ages 11-14), during which we had to run around the nearby park and through a bit of town and over the hills and far away (when we got to the senior school (14-18 years)  that was on the outskirts of town. But these things, along with the way I looked, my ineptitude at physical activity, and my scars, and my time off school for hospital visits, and the fact that my mum had to come into school to give me physiotherapy, all made me not-normal, an alien, in the eyes of my peers. The teachers were, on the whole, kind and careful; but this didn’t always help me not to stand out, or at least feel like I did.

Apart from “the run”, I participated in everything else the PE teachers threw (not literally) at me, to the best of my (in)ability. The problem wasn’t just that I tired easily – in a way that was the least of my worries – at least it would have been more excusable. However, I also had/have terrible coordination, bad spatial awareness and a tendency to run away if a ball comes flying through the air anywhere in my vicinity. So PE was rather a write-off, until Year 11 when we could choose what we did and I spent many happy hours playing badminton or tennis with my best friend, H. Also, tennis. Don’t ever play tennis with H. Her tactic was to whack the ball as hard as possible. In theory, I probably won all the games I played with her because she hit out so many times, but we never really kept score.

Photo by Kevin Mueller on Unsplash

Cooking and baking as therapy

To be able to take ingredients and make them into something tasty and pleasurable for yourself and possibly also for other people is a great gift. And people do it all the time when cooking, and they don’t seem to even think about it. It makes me quite cross when people are not sufficiently grateful for/to the people who make the dinners; the chefs, the parents/carers, the canteen workers, the au pairs (do people still have these?) et al.

Anyway, yes, the creativity of baking. It’s one of those things, really, where the possibilities are endless. You can make something out of not very much and it could turn out to be the best thing you eat all week. The healing factor of this cannot be underestimated – it is indeed therapeutic; not only the creativity of it, but also the practical actions: sifting, kneading, rolling, pressing, dusting, scattering, stirring, mixing, creaming, whipping. Using your hands to touch, feel, measure, weigh, divide, rub, create.  Baking is an escape from the everyday – it is not necessary, but it is wanted, it is comfortable, and in the right circumstances the kitchen can be a safe and protected space. “…to fold myself into the comfortable cloud of mix-baste-and-boil”, as Fisher says in The Gastronomical Me.

Even ‘simple’ cooking can fulfil this function – if you are the cook, you are important, even if  those you feed don’t consciously recognise or acknowledge this. They need you, otherwise they’ll be living off tins of beans and burned toast. So, whether they like it or not, you are the ruler of that particular sphere of home (or wherever) life. And of course cooking and baking, like all other sciences,  are about control. You, the baker, are in control of the ingredients, you are the only one baking, you are measuring, adding, heating to exactly the right measurements –  you are the one in control of all these things, making beautiful (and hopefully tasty) order out of chaos. 

As for all humans, but perhaps even more so, control is very important for people with chronic illnesses, because so much of their lives is beyond their own control. Stuff happens to you if you are ill – other people make decisions for you, you are not free to write your own narrative, your person is colonised. Illness is “about learning to live with lost control”. As Arthur Frank says, disease is a loss of predictability, and causes further losses: failures of body, mind and spirit that are too many and varied to list. Failures in reaching ‘life goals’, too, – not just the ones we might set for ourselves, but also the ones set for us by society – the goals, that, if we don’t meet them, change the way people look at us.  Cooking and baking give me back some control over my life, even over people’s reactions to me – my self. The cakes I bake become my stand-ins – they are between me and the world – see and eat my cake and love me for it/through it.  Is that enough? I guess it’s not ideal.  And yes, baking is predictable, at least to some extent – if you always use the same oven..

Vanilla ice cream

In any case, here I was sitting on my bed in a hospital children’s ward, eating very yellow vanilla ice cream. We had similar ice cream at home when I was growing up, and my main memory of it in that context was that it was nigh on impossible to get it out of the tub! Soft scoop indeed! And none of your ‘real vanilla pods’ here (apologies, Nigel) – this was proper vanilla ice cream, bright custard yellow, as it should be.

Two things stand out from this hospital visit (I can’t remember what it was for – it may have been heart surgery, or it may have been some kind of invasive test). The first thing that sticks in my mind is of course the ice cream. I would also like to take the opportunity here to mention hospital grade mashed potatoes. They had a particular smell, which was actually delicious and mouth watering to a hungry child, which I now recognise as belonging to instant mash. I guess it saved someone the trouble of peeling hundreds of potatoes. I still love instant mash, its smell and taste, and eat in on a regular basis – not all brands smell the same, though. The cheaper the better, I think.  The food in hospital arrived, much as it does now, in a stainless steel contraption on wheels, a giant hot cupboard. I was always so relieved to see the hot cupboard appear on the ward.

The second thing that has stuck with me about the ice-cream eating, is a little girl like me, a similar age. I think she was called  Elizabeth. I only have vague memories of her, just a shadow of a person; company for a change. Elizabeth is only significant in that I remember her at all, not because she said or did anything memorable at the time. I suppose there must have always been other children in the wards, but I only remember things as happening to me on my own. Yes, it is a very passive voice. (I once read that you should use the passive voice as little as possible when writing, but I am breaking all the rules here, Fay Weldon. (Also, at this moment, I am not writing a novel). Things happened to me, as a child, on my own. Memory and the experience of ill health shrinks the world to only what is happening to you – your pain and suffering, your boredom, your endless waiting for things to happen. But this is not the case with the eating of ice cream – I wonder if it’s significant that this was something enjoyable so my universe widened out a little and let someone else in to share it.

I’ve often wondered if I’ve ever unknowingly met Elizabeth again on my travels through clinics and hospital corridors. 

Vanilla ice cream with coloured sprinkles in a bowl covered in coloured sprinkles
Photo by sheri silver on Unsplash

Some baffling misdemeanour

“If they are not given any understanding of why unfamiliar people are doing alarming and horrible things to them, children often think they are being punished for some baffling misdemeanour”

(Kate Bull, Open Hearts, p.107)

I can imagine me doing this. Even now, I assume I have done something wrong if that’s at all possible to do in the situation I’m in. As a minor example, if someone doesn’t reply to my email, I think it must have been something I said. I remember, as an older child/teenager, raging against nothing because I felt I was always being punished for some unfathomable crime I hadn’t committed.  It’s not just that medical procedures can seem like a punishment, but also having the illness/defect in the first place. I never asked, ‘why me?’ in so many words, because I think, as Professor Umbridge says in Harry Potter and the Order of the Phoenix, “[D]eep down you know you deserve to be punished”. [At least she says this in the film, I can’t remember if she says it in the book as well.] I guess it was a way of trying to rationalise things that had no ‘reason’ for happening, at least no reason in the moral, non-biological sense. As children, we’re taught that bad things will happen to you if you do bad things or, worse you are bad. I think the feeling of being bad, being guilty of something, being wrong, being fel, is probably part of depression and probably also part of what makes one depressed, so it’s a bit of a vicious circle really. You/I/one can never get quite right with the world – we don’t fit into it like everyone else seems to. 

And you can see why any child might see medical treatment as a punishment – I would not be surprised if adults did either. Various pieces of research carried out with children dna adults with congenital heart defects/disease (CHD) has shown that people in the CHD population are several times more likely to develop post-traumatic stress disorder (PTSD) than the average person: A study carried out by Meentken et al, in 2017 showed that 12-31% of children undergoing cardiac surgery develop PTSD and 12-14% show elevated post-traumatic stress symptoms (PTSS) (Morton, 2019). Deng et al (2016) found that 11-21% of adults with CHD had PSTD compared to 3-5% in the general population (Morton, 2019). 

This is hardly surprising, even if we only look at one aspect of what a person with complex CHD generally goes through. Children/teenagers (I don’t know up to what age this is considered acceptable) are forcibly held in order that they can receive medical treatment. In a study by Bray et al (2015, 2018)  81% of medical professionals reported children being forcibly held frequently or very frequently despite potential fear of future procedures and contribution to PTSD, and in defiance of professional guidance, which states that “Clinical Holding” , as it is known, should be a last resort (Morton, 2019).  To make matters worse (possibly), it is often the parents of the child who are asked to forcibly hold them, potentially leading to fear and/or distrust of the parent.  Van der Kolk (2014) says, “Immobilization is at the root of most traumas” – it is easy to see how children with CHD develop PTSD or other post-traumatic stress reactions. 

To make matters worse, “…each developmental stage comes the risk of experiencing psychological and emotional difficulties that may result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 2014). Because congenital heart disease is always with us, the people who have it, and our families and friends if we’re lucky enough to have any, there is no end to the risk. It is a chronic condition. Sometimes, a defect is mended and the person only has to check in with their cardiologist once a year, and never has to have any further surgeries or procedures, but this is quite uncommon. Most people with CHD need lifelong follow up outpatients’ appointments at least, and many require further interventions and possibly further surgeries throughout their lives. It can easily be surmised how these experiences could “result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 2014). 

“Children who don’t feel safe in infancy have trouble regulating their moods and emotional responses as they grow older” (van der Kalk, 2014). Although I’ve been diagnosed as being “mildly” autistic I sometimes, well, often, wonder whether my ‘symptoms’ are actually a reaction to not feeling safe in infancy – or possibly symptoms of post-traumatic stress.  Although I disagree with some of her points, I find Holly Bridges’ (2015) idea that autism could be a reaction to childhood trauma an intriguing one. She argues that the Polyvagal Theory suggests autism is a learnt response by the body – a result of the child being in a prolonged state of ‘fight or flight’ while their nervous system is still developing. 

Cornett and Sims (2014) make the point that this emotional impact on the child often remains hidden. Sick children are told to be brave,  to be ‘good’ for the doctors and nurses, even when it is totally unreasonable to expect them to do this. They (or at least we, I hope it’s better for sick children nowadays) were taught to suppress their feelings, emotions and negative reactions to medical treatment. Morton (2019) suggests that ‘rewards’ such as bravery stickers, only serve to reinforce this narrative and could encourage children to suppress their feelings instead of talking about and trying to deal with them in a healthier way.

The idea of ill children being brave fits into the wider ‘sick person as hero/warrior’ narrative that is so prevalent today. More of which another day…

References

Bridges, H. 2015, Reframe your thinking around autism:  How the Polyvagal Theory and brain plasticity help us make sense of autism. Jessica Kingsley Publishers, London.

Bull, K. 2016, Open hearts: stories of the surgeries that change children’s lives, Elliott and Thompson, London.

Cornett, L. & Simms, J. 2014, “At the ‘heart’ of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood“, Journal of Health Psychology, vol. 19, no. 3, pp. 393-406.

Morton, L. 2019, “Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper”Journal of Health Psychology, vol. 25, no. 2, pp. 197-206.

van der Kolk, B. 2014, The Body Keeps the Score, Penguin Publishing Group, East Rutherford.

Image by inspiredbythemuse via Pixabay

Prototypes

”…early experience becomes the prototypes for all our later connections with others, and…our most intimate sense of self is created in our minute to minute exchanges with our caregivers”

Bessel Van der Kolk, The Body Keeps the Score, p.109

I imagine my very early baby-world wasn’t full of pleasant experiences. When I read quotations like the above I wonder how any of us congenitally ill babies of the 1970s survived emotionally and psychologically into adulthood at all. Our early babyhoods were probably just about the opposite of what would be considered the ‘ideal’: separation from caregivers (parents and guardians), painful and what in any other walk of life would be considered unacceptably traumatic experiences, forced holding, un-peaceful places, broken sleep, lack of routine, not being able to feed, and so on ad nauseum.  But here we are, or at least some of us. We were, of course, amazingly fortunate to live in the ‘right’ time period and the ‘right’ place so that medical treatment for our physical conditions was available and for free, too, if we were lucky enough to live in countries with a national health service/system.

We do count our blessings, but I feel there are stories still to tell about the effects of these ‘miracles’ on our little minds and souls. How they have grown and flown away from real life, we feel like aliens in our own homes, schools, lands, societies. We were expected to face death head on, to suffer in ways unimaginable (we hope) to our peers and then go out into the world with ‘normal’ people and do ‘normal’ things, with no psychological support at all, and emotional support only if you were lucky and had emotionally intelligent parents/carers – these are rarer than you might hope or believe.  Yes, normality was the goal to aim for; it was what we were asked to be, what it was all for (whether this was stated overtly or not) – but I never managed it and I’m 42 now.

1 in 100 born with a heart defect

(Gall)Stones in the road

Stones in the Road is an excellent album (and song) by Mary Chapin Carpenter, that I used to listen to over and over again. And I just made a bad pun out of it.

I’ve been on the hunt for new (to me) ways of baking recently, because I have gallstones, and have basically had to give up almost all fat – even ‘good fats’ like olive oil cause my gallbladder to flare up and hurt me if I eat them. It is, to be blunt, extremely annoying. (I would like to use a word other than ‘extremely’ but I don’t like to swear in public).

I discovered I had gallstones in March, just before lockdown started in the UK. It was about 10 pm, and I was sitting on the sofa minding my own business and doing some crochet. I started to feel a pain in my right side and back, and this got worse and worse quite quickly, and then I felt sick so I went into the bathroom and called my husband for help. By this time I thought I was having a heart attack. It was probably the worst pain I’ve ever had, not just because of the actual sensation of pain but because it was so anxiety inducing. My husband called 999, and they didn’t have an ambulance nearby so they send a fire crew – they are trained in CPR and have the right equipment. By the time they arrived the pain had lessened a bit and I was able to sit down on a kitchen chair in the middle of the living room. Then the ambulance came and took me to the hospital. I was there all night, waiting in A & E, where they did some blood tests and a doctor said it was gallstones. A few days later I went for a scan, which confirmed this. The doctor asked me I wanted to have my gallbladder removed, but when I said I have a congenital heart defect he understood why I didn’t want to. So now I’m just trying to manage it with diet, and the occasional painkiller.

The pain has never been as bad since…so far, but, as I said above, I definitely notice the pain if I happen to eat ‘too much’ fat for my gallbladder to handle. Pizza is one of the worst offenders, alas, but even more innocent-seeming things like peanut butter can cause the pain if I eat too much of it, and more than one square of chocolate a day is definitely not on. So, I have bought myself a couple of ‘low-fat’ cookbooks, and then adapted the recipes a bit so there is even less fat in the finished product. It might sound extreme, but the alternative is chronic pain for the rest of my life, so I’ll take the almost-no-fat flapjack anytime.

Almost-no-fat flapjack

Macaroni cheese day (AKA autism diagnosis day)

[Written just after the day in question – edited July 2019]

hermes-rivera-lLpccUSDWQg-unsplash
Just looking at this makes me feel hungry. Photo by Hermes Rivera on Unsplash

One Monday at the end of February, I went to Waitrose to do some shopping and have lunch (macaroni cheese – too hot, but delicious) before going to see a clinical psychologist. I asked work to refer me to see someone because I wanted to know whether or not I’m autistic, and it turns out I am. But now I know this (what I suspected all along), I am finding it hard to know what to do with this information – harder than I expected. I thought I would feel like I understood myself now, that I had a group to belong to, that now I know the reason (or maybe combination of reasons) why I am the way I am (as it were) that I would feel better about myself. But really I just feel the same, with the added complication of having to tell people about it. Well, I don’t have to, but it would be a bit weird not to.

I’m not saying it’s not a relief to know – at least to know that I wasn’t wrong, but I feel that it’s just another thing to add to my list of weirdnesses, rather than something positive – oddly, I felt more positive about autism before I was diagnosed with it. Maybe that’s just because I often see myself as a massive ball of weirdness – so how can autism be a positive thing if I have it? Also, you know, what if she just said I’m on the spectrum because my workplace paid her to assess me? I don’t know – I am being paranoid, and goodness knows I’ve been thinking I’m autistic for ages, so it’s not like the diagnosis was a surprise, but still, I’m not feeling how I expected to feel. I am ruffled. I think I need to talk to someone who will understand, but I’m not sure who that is.

The psychologist said if the term was still in use she would have said I have Asperger’s, but as it isn’t she says I am mildly autistic – this just means my intelligence and speech are good, but doesn’t mean that my autism won’t cause me any difficulties, in fact in some situations I might react just as ‘badly’ as people with who are moderately/severely autistic. I guess it just depends on whether or not I’m in a ‘triggering’ situation, one that I find particularly difficult to process sensorily (I think that’s the first time I’ve used that word)

Formal 

by (the use of) the senses; by means of the senses; in relation to or in respect of the senses

to explore the world sensorily

– Collins English Dictionary 

 

 

 

 

Exercise test

I had an exercise test  (also known as a stress test) on Thursday. I’ve been dreading it for a while, mainly because I was worried about coordinating myself on the treadmill. I’m not usually very good with moving walkways – escalators are a no no – because of my issues with balance/vertigo. But I had to have the test. I was hooked up (or rather clipped up) to the ECG holter monitor, and then I was supposed to do a lung function test before the exercise test itself, but the mouthpiece you’re supposed to blow into was too big to fit in my mouth! I have a very small mouth, so small that the dentist has to use the children’s x-ray plates when he takes x-rays of my teeth. They didn’t have child-sized mouthpieces for the lung function machine (although presumably there must be some somewhere in the hospital?) so my lung function was not tested.

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Photo by Valeriia Bugaiova on Unsplash

So, on to the treadmill. This, you will not be surprised to learn, was not as bad as I’d expected in terms of coordinating myself. I found that the key was to not look at the treadmill but instead look at the ‘horizon’, in this case the wall. When I got on to the treadmill I had my blood pressure taken and an oxygen meter was put on one of my fingers to measure my oxygen saturation levels during the test. Oh, I forgot, the face mask – this was not much fun although it was interesting to see the new design of the masks. They are no longer rubbery and held on with elastic straps, but made up of a plastic bit to breathe through and the rest is material that wraps round your head. It was more like an old-fashioned gas mask than anything else. Not good for the claustrophobic, but then no masks are. At least it didn’t have that horrible smell the old masks had. Anyway, the point of the mask was to monitor my breathing during the test. Also during the test, my blood pressure was taken every two minutes. The technician doing this had trouble hearing my heart sounds, so it took her a few attempts to take it. This is normal for me – I feel sorry for the technicians/nurses/doctors because they seem to think it’s their fault, but no, it’s just me. And then I apologise for myself a bit.

I managed to get to stage three of the test. Each stage is three minutes long. The first stage is a normal walking pace, the second is a bit faster and the angle of the treadmill is adjusted so you’re on a slight incline, then the third stage is a brisk walk and a steeper incline…and I guess the fourth stage is brisker/running and steeper but I didn’t get that far. I think I got about a minute into the third stage. Then I had to stop and I was able to sit down and have a drink of water while my blood pressure was taken again and my oxygen levels were checked and probably some other things I didn’t know were happening.

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Me running – in my dreams. Photo by Sebastian Staines on Unsplash

After the test, the technician went to find the pacemaker technicians to see if they could see me – she didn’t explain why. It turned out they could see me if I waited a bit, so I went back to the waiting room and sat and listened to an amusing very upper-middle-class woman and her elderly mother in conversation. Then it was my turn to see the pacing technicians and they said that during the last part of the test, when my heart was working harder, it had gone into a “Wenckebach rhythm”  which is where the lower chambers of the heart expand and contract at a different (slower) rate to the top two chambers. This can cause shortness of breath in some people (although some people are asymptomatic).

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Karel Frederik Wenckebach By unknown – textbook, Public Domain, Link

The irony of it was/is that it is actually my pacemaker that caused my heart to do this, because of how it is set up – one of the technicians did explain how this happens but I’m afraid I didn’t really understand it and can’t remember what he said. Anyway, they have changed the settings on my pacemaker to see if this makes me feel any better, but there are disadvantages to doing this. (1) the pacemaker will be pacing my heart more so my heart will (over time) become more reliant on it – this can actually make heart failure worse because the heart gets ‘lazy’ and weaker – just like a person who doesn’t exercise. (2) The pacemaker’s battery will run out faster because it’s working harder. I’m going back to the hospital in August so I will report back, and if the new settings haven’t made any noticeable difference they will change the settings back to the old ones.