Pondering Certainty #Undiagnosed

Something a little different today. Three years ago my then 11 year old son asked me to stop writing my blog about his disability, so I stopped, and several years of posts are no longer visible. Now my blog is mainly about me trying to get healthier, physically and mentally, interspersed with random pondering on life, the universe and everything! But on Undiagnosed Children’s Awareness Day my son accepts that I can write about him to raise awareness without breaching his privacy. 

(Image by Swan UK)

My son has an undiagnosed genetic condition. A lot of people don’t realise this is possible. The normal experience is 

  1. Something is wrong
  2. Doctors investigate
  3. Something is diagnosed
  4. A treatment plan follows

But its not always like that. 6,000 children born in the UK every year will have a genetic condition which remains undiagnosed. 

Some children are undiagnosed because things stall at the investigation stage, tests show nothing despite there clearly being a problem. This may be because they have a genetic difference too small to be spotted by current tests. Some are eventually diagnosed, but only after many years of uncertainty and testing. Others, like my son, are undiagnosed because a genetic difference is identified, but it doesn’t link to any known condition. As DNA testing advances, and can spot smaller and smaller genetic differences, this group is likely to grow. The clinical side can’t keep pace with the genetic side.

My son has a genetic diagnosis, a string of letters and numbers that documents exactly which genes make up his extra chromosome, but no clinical diagnosis. No idea how it will progress, what he can expect as he grows up, or even whether it’s the whole extra chromosome, just one gene within it, or something completely different that causes his disability. He does have a list of conditions: global development delay, moderate learning disability, severe dyslexia, severe dyspraxia, autistic traits, sensory issues, speech and language issues etc. etc. But these are each just a part of the jigsaw puzzle. We’re missing many pieces and can’t find the lid with the complete picture on it. 

Things have come a long way since my son was little. There’s a charity, Swan UK, providing much needed support to families of undiagnosed children. They launched when my son was 8, before then I’d been struggling alone. With them we have a network of supportive families going though similar situations. My son loves meeting other undiagnosed children, and strongly identifies with being a Swan child, with having a Syndrome Without a Name. But many people still think you need a diagnosis to get support. 

(Image by Swan UK)

My son has grown into a confident cheerful young man, who talks openly about his genetic difference and the difficulties it causes him. He can explain what support can help him cope when things are difficult. He’s becoming a wonderful advocate for himself and other undiagnosed children, he thinks as many are non-verbal he should use his voice for them too. Today he’s persuaded his school to raise money to support Swan UK. Nothing is certain, we really have no clue what the future holds. That does worry me as he moves towards adulthood and I see services failing, but we are supported. 
Society seems to be craving certainty more and more. Everyone has to have a definite opinion on everything, it’s got to be certain, it’s got to be now, ideally in a short soundbite. Facts are less important than how convinced you are. Saying you would have to study something in detail and then make your mind up is seen as weakness. There’s no more discussion, no debate, no prospects it seems of people changing their views, just name calling and division. 

Perhaps its because I’ve had to come to terms with so much uncertainty at home that I find this especially challenging. 

I don’t believe things are that simple, that definite. I’m rarely certain of anything. I think the drive to certainty creates a harsher more divided society. Everyone has to be on one side or the other, for or against, in or out, right or wrong, and the opposite side is the enemy. What if the solution isn’t in or out, what if it’s up or down or diagonal? What if the world is not made up of the right and the wrong but of many possibilities, each with the potential to have good and bad effects? 

The Swan community is made up of families who encountered a possibility they may not have planned for. My son’s genetic difference is a random blip, a spontaneous mutation affecting every cell in his body. And then affecting every person he meets. It can be isolating, it can be frustrating and it can cause stress, but it has also brought us into a wonderful community, showed us how strong and resilient we are, and improved our lives. Just because it’s uncertain doesn’t mean its terrible. 

I think that’s another lesson for life. 

– – – – – 

Please visit Swan UK to find out more. You can donate to support their work by texting SWAN11 £3 (or any amount up to £10) to 70070. 

Swan UK want to reach as many families with undiagnosed children as possible. Please pass on this information to any family you know who have an undiagnosed child. 

That’s what apples look like! #NewcastleCan

My teenage daughter is looking suspiciously at the fruit bowl. I blame myself for this. 

It’s not that she doesn’t eat fruit. It’s that the fruit she’s used to is generally supermarket bought; uniform, highly-shined fruit, available all year whatever the weather. 

A couple of years ago I read Swallow This: Serving Up The Food Industry’s Darkest Secrets, by Joanna Blythman* and learned about some of the processes that happen to supermarket fruit to keep it shiny and fresh looking. I was horrified. I thought I was feeding my kids healthy fresh fruit, but it turns out its covered in chemicals the shops don’t need to declare because what they’re doing to the fruit counts as a process not an ingredient. 

There seems to be so much to worry about when buying food anyway, excess packaging, food waste, air miles, palm oil, E numbers, fats, sugar, carbohydrates, cholesterol… It’s all too much to take in – so I just filed the information away in my brain and kept buying the fruit. Because some fruit is better than none, and they wouldn’t be allowed to use anything dangerous, would they? 

I’m currently reading Unprocessed: My City Dwelling Year of Reclaiming Real Food, by Megan Kimble* and it’s got me thinking about the issue of processed food all over again. In trying to get healthier for the Newcastle Can challenge I’ve been trying to cook more meals from scratch, less take always, less frozen chips, more fruit and veg. But if the fruit and veg I’m buying from the supermarket has already been sprayed with pesticides, shined with wax, and coated with chemicals to make it last longer is it still healthy? 

I don’t think I could completely avoid processed foods but I would like to avoid more of them. I think there’s a connection between the increase in obesity and the rise in power of the food industry. I’m no dietician or nutritionalist, I’m just a very confused ordinary person who wants to do better. But where do I start? 

In the introduction to Unprocessed Megan Kimble describes how a simple suggestion made her see things in a totally different way: “Spend money better.” Her example uses American dollars, but I imagine it would be similar in the UK. 

“If a community the size of Tuscon shifted 10 percent of its spending to local businesses – a 10 percent shift, not an increase – within one year, we would create almost $140 million revenue for the city. What this also means, I realise, is that we would withhold that $140 million from the balance sheets of those corporations that then use our money to influence government policy, to grow unsustainable food, to waste energy – and to process and sell us foods that aren’t good for us. 

This came as a revelation to me too. I mean, I knew buying local was a good thing. I try to support small local businesses rather than big chains when I’m treating myself to cake and coffee, going out for a meal or buying gifts, but it had never occurred to me to do the same for my food shopping. The supermarket is just where you buy your food, it has been all my life (although, at the risk of sounding like a grumpy old woman, the supermarkets when I was little were very different from the massive 24 hour stores I’m used to now).

For a while in the late 90s/early 00s I got organic veg delivered. But my budget was tight and organic food started being available much more commonly in the supermarkets, so I stopped. As money got tighter I started only buying organic for the things we eat raw, and gradually only buying organic if it was reduced to clear.

I like to think of myself as frugal rather than penny-pinching, careful rather than tight-fisted. I like a bargain, who doesn’t? As prices have been going up much faster than wages for quite a while I need to watch what I spend, as do most people. 

But I want to put my money where my mouth is. I don’t want to just whinge and worry about processed food, excess packaging, sustainability, air miles and the rest. I want to do something. And I think it would be great if as well as bringing the city together to get healthier the Newcastle Can project boosted the local economy! 

So I’ve signed up to a trial weekly fruit and veg scheme from North East Organic Growers. It felt really expensive, but then I’ve never paid for a full months worth of fruit and veg in one go before. And given what I’m saving on take-aways since signing up to Newcastle Can I have some spare cash.

Every week my fruit and veg is delivered to a local contact person and I collect it from there. I don’t know what I’ll be getting in advance, it’s like a lucky dip and the kids are always keen to help unpack to see what’s there. There will always be staples like onions, potatoes, carrots, apples etc. but there are other things too, things I wouldn’t necessarily pick up if I was food shopping. For example purple sprouting broccoli is something I’d heard of but never cooked with, so it’s challenging me to cook new recipes and try new things. 

Veg I recognise…

… and the odd thing I don’t.
It’s also showing my kids what real fruit and veg is like. I remember when I was little strawberries were a summer treat, waited for with anticipation, then wolfed down in abundance because they didn’t keep. To my kids strawberries are just another item on a supermarket shelf year round. Yes, I’m sounding like a grumpy old woman again, but it was different when things were special, when we didn’t all expect to have everything and have it now! 

Real fruit.

So, my teenage daughter is looking suspiciously at the fruit bowl. I blame myself for this. But I’m working on putting it right.

“Those apples look weird.”

“What’s wrong with them?”

They’re not very shiny. And that one’s got speckles.”

“That’s what apples look like! Just try one.”

She liked it.

– – – – – 

Click here for an extract from Swallow This: Serving Up The Food Industry’s Darkest Secrets, by Joanna Blythman

Click here to find out more about Unprocessed, by Megan Kimble.

Ignoring my inner bully.

I was brought up to believe good attendance was incredibly important. You only missed school in our house if you were physically incapable of going. Partly this was because both my parents worked and parental leave was even more of a nightmare in the 70s and 80s than it is now, but mainly it was because it was the right thing to do. 

You’re supposed to be at school, you make every effort to go. You’re supposed to be at work, you get there. You have obligations, you’ve made a commitment. You do it because you’re better than the layabouts, the slackers, the people who don’t try their best. You get on in life by working hard. You stay busy.

Its a mindset that has stuck with me and it’s not uncommon. Every workplace has its share of people who hardly ever phone in sick as they try to struggle on despite cold, headache, fever etc. Good managers will send these people home, both to give them time to recover and to protect the other staff from the germs, but other workplaces expect staff to work through illness, penalising sick leave and treating those who are unwell with contempt.

I once worked for an organisation where “Staff Health” was used as an intimidation technique by managers, if you didn’t stop disrupting their business by being so selfishly unwell they threatened to get rid of you by sending you to Staff Health. I know people who’ve worked for organisations where the staff health systems were well used and supportive of staff with ongoing medical conditions, as it’s surely designed to be. I think it just shows bad managers will treat people badly with whatever tools are at their disposal. 

If I find it really hard to take sick leave when I’m physically sick, it’s even harder when it’s my mental health that’s failing. I saw my GP this morning and was advised not to go back to work just yet. I know I’m struggling, I know I can’t do my job as well as I should just now, and the anxiety about everything would just keep building til I broke if I went to work. 

And yet there’s that bullying voice in my head “There’s nothing wrong with you. You’re perfectly fit. If you can get out to walk the dogs you can get out to go to work. Why are you just lounging about doing nothing? The world would grind to a halt if everyone just gave up whenever they felt sad or worried. You useless waste of space.” And so on. 

But there is something wrong with me, and just because it’s not visible doesn’t mean it’s not real. My whole pattern of thinking is scewed just now. My reaction to any sort of decision making is a fight or flight panic, heart pounding, head hammering, sweaty, breathless fear. The fact I recognise it’s illogical doesn’t make it stop. I know from past experience that if I try to do things when I’m wobbling like this I will just keep getting worse, until I no longer recognise this scewed thinking as illogical. That is where the real danger lies. 

So the break I wrote about last week in Stopping is becoming longer. I will take this time to reset, to ease my mind, get to grips with altered medication, grow my strength. It’s not selfish, it’s necessary. I will try to ignore the voice telling me otherwise. I will try to do things that will fill my spiralling mind without worrying that I should be at home in bed since I’m too ill to work.* 

If I’d injured myself I wouldn’t think it was selfish to go to physio or occupational therapy, so why is self care for mental health seen so differently? Why does our society make us feel guilty for being ill, being less than perfect? Why does what’s visible matter most?

I’m trying to be more open about my mental health, to feel less embarrassed and ashamed of my lack of control of it. I have decades of trying to hide it to overcome, but I know talking about these things helps to normalise them, I know I’m not the only one struggling. Its really helped me to know strong people who were open about their mental health challenges. I don’t feel strong yet, but I’m done feeling guilty for something I can’t help. 

Slightly the worse for wear, but still beautiful.

* I first wrote this section with “I need to” instead of “I will…” but I remembered what I’d written earlier this month about using need too often, and decided I sh/would be more decisive about it! 

15,000 steps and a slice of cake before lunchtime. #NewcastleCan

Time is an illusion. Lunchtime doubly so.

Ford Prefect*

Last night I set my alarm for 8am, which is not usual. For me Saturdays are a time to catch up on the limited sleep I get through the week. 

My partner is the sort of person who can say “Goodnight”, roll over and be snoring within 10 seconds. Sleep doesn’t come that easily to me. I toss and turn, my brain spiralling through repeated anxieties, until finally I fall asleep. I usually get about 5 hours on a weeknight, and that’s since an increase in medication made me sleep noticeably heavier. 

I know this pattern of little sleep on weeknights and long lie ins at the weekends isn’t healthy. I know lack of sleep can contribute to poor mental health. In my case I’m not sure whether the poor mental health causes the problem sleeping or vice versa. 

Anyway, none of that lounging in bed til lunchtime for me today. It turned out my 8am alarm was optimistic, as the dogs decided at 7.30 that they needed to go outside urgently. When my alarm went off I was already eating breakfast and drinking tea.

The reason for the uncharacteristic early rising is that, following last weekend’s Newcastle Can taster sessions, I have signed up for a Dancercise class. And because I had a poor week in exercise and healthy eating terms I’d decided to challenge myself even further, by walking there and back. 

It’s not a particularly exciting walk, mostly through housing estates except for a brief spell across the Town Moor, but its one I’d done before and was confident I could manage on top of an hours dancercising. My map app said it would take 55 minutes, but the app creators have a very poor understanding of how fast a fat lass can walk when she puts her mind to it, so I allowed 45. 

I threw in a couple of short bursts of jogging and made it there in 40 minutes. I’m fairly sure jogging isn’t for me, it takes all my concentration and I can’t keep it up for any length of time, but I persevere because I know it uses different muscles to walking and I reckon every little helps. (Other inspirational supermarket slogans are available!)

The class was small and friendly, and as it was the first we were all newbies together. There was shimmying, hip swinging, bhangra, rock, charleston, lindy hop and even jazz hands. Something for everyone. I struggled to get my arms and legs doing different moves at the same time, but it didn’t matter because I kept moving.

I think part of why I enjoy the Dancercise is that it doesn’t come naturally. While my peers were learning to move to music I was listening to Metallica and Megadeth, neither noted for their dance moves. So it takes all my concentration. And that means those spiralling thoughts, the worries and anxieties that have dragged my mood down this week, have to stop. There’s no room for them when all my concentration is on getting my body to move to the music.

It didn’t feel like an hour. It didn’t feel like a class either. It felt like relaxing and having fun, while at the same time moving and exercising.

Afterwards some of us went for a cuppa and a cake, because, as I’m learning, getting healthy isn’t about never having treats. Its about adding to what you already do, little changes which build and grow. You need to enjoy it, not feel its a chore you’re obliged to undertake.

I walked back, with occasional jogging, and realised I didn’t feel as anxious as I had earlier. On the walk there my brain was doing its anxious, spiralling, hamster-in-a-wheel thing which I’ve struggled to control this week. On the way back I was noticing the sunshine, thinking about exercise and movement, feeling energised. That hour of concentrating on movement had stopped the spiralling. It’s an unexpected way in which improving my physical health can improve my mental health, just giving me a break from my bullying brain.

Before I signed up to NewcastleCan I’d have laughed if you suggested I join an exercise class. I’d have given you loads of reasons why it wasn’t for me, why I didn’t have time, why the very idea was absurd. If youd said I’d be up early, and have done 15,000 steps by lunchtime, I’d have laughed too. And if you’d said I could get healthy and still eat cake I just wouldn’t have believed you!

I’m almost 3 months into my journey of getting healthier, body and mind, and I know now I’d have been wrong back then. I wonder which of my other assumptions about myself will be challenged along the way? 

* In Hitchhikers Guide to the Galaxy, by Douglas Adams. But you knew that, right? 

Stopping. 

I’ve always been a picker, a worrier. No scab left to heal, no blemish unprobed. Sitting in a pub I’ll be shredding the beermats, my restless fingers can’t keep still. My thoughts are like that too. I can’t switch off, I go over and over everything, into minute detail about scenarios which aren’t remotely likely because I just can’t stop.

Sometimes it’s unconscious. I’d wondered for years about the unexplainable callouses on my hands. They never go away, they don’t correspond with how I hold a pen or anything else. I mentioned it to my GP a while ago, and she looked at me and said “Really?” And I noticed for the first time that I was gnawing on my fingers, an outward sign of my anxiety that I must have done for years without ever being aware of it. Now sometimes I do notice I’m doing it, but it’s not that easy to stop. 

It’s the same with my thoughts. These days I do often recognise when I’m being irrational, when I’m getting overwhelmed and upset by things that aren’t directed at me at all, when the last strands of control are slipping through my fingers. I notice it, but I can’t stop it. 

I am curled up in bed, with a dog who senses that my need for company outweighs the ‘no dogs on the bed’ rule. I should be at work, but the negative blips that have been happening over the past couple of weeks combined into a flood I couldn’t cope with. So I am at home, where I’m trying to switch off and be kind to myself.

I’m trying to stop the incessant barrage of my thoughts. 

Everywhere I look there are things I should be doing, reasons to beat myself up for the mess I am, to class myself as a failureBut I’m not going to do that. I need to stop. 

Completely stop.

I’ll give myself today to stop, and tomorrow I’ll look at starting again. I’ll try not to pick up where I left off, with stress and anxiety preventing me making the most basic of decision. I’ll try to restart by building on the break, with a rested empty brain ready to deal with the tasks that need doing, rather than too full of worries to even know where to begin.

I recognise the irony that as my physical health improves my mental health is wobbling. I’m trying not to probe that, just to notice it and move on. I hope to keep this as a wobble, not a breakdown. I could speculate for hours on why now, what’s triggered it, what can I change to prevent it happening again, but that would just make me more anxious. 

So I empty my brain, concentrate on just being here without worrying about anything, ignore everything that needs doing. There’s nothing that can’t wait. 

Sleepy dog keeping me company.

Too much chocolate.

I’ve had a bad day. One where everything went wrong and I just felt I shouldn’t exist at all. 

I managed no unhealthy snacks at work, but once I got in I ate chocolate. And more chocolate. 

I put the chocolate away, then got it out again and ate more chocolate. 

I went to make tea, and before I started I ate more chocolate. 


There’s something to be said for not keeping anything that will tempt you in the house when you’re trying to be healthy. But if there hadn’t been chocolate I don’t know what I’d have done. 

I don’t even know why I was eating the chocolate. I wasn’t hungry. Was it a distraction? A craving? Self harm? 

I’ve been trying to break the link between stress and food, but it’s strong. It keeps snapping back into place. 

I’d like to stay I took hold of myself and stopped myself eating the chocolate. But in reality I ate it until I felt sick, until I couldn’t eat any more. 

And then I cooked tea. I made fried rice. I concentrated on finely chopping the vegetables. I tried to forget everything.


The bad day continued. I forgot the garlic and only remembered the prawns at the very last moment. It didn’t matter though, it still tasted good. 

It showed me I can turn a bad day around. I can find a little victory. I stopped eating the chocolate, I didn’t order a takeaway, I made a healthy meal for my family.  


I still feel sad, hopeless, overwhelmed. But it’s when I feel like this that I most need to cling to the little victories. 

The Newcastle Can Can-Can and other moves.

Today Newcastle Can joined with various leisure facilities across the city to offer free sessions to residents to kick start their fitness. There are an awful lot of people out there, me included, who never consider going to a gym and expect it to be an unpleasant experience. I think they hoped actually getting us in there and proving there were no demon PE teachers waiting to ridicule our every failure (or perhaps that fear’s just me?) would make us consider going more often.

I persuaded my partner to come along, partly for moral support and partly so I was sure there was at least one other person there at my poor fitness level! We went to Eldon Leisure. I walk past this place several times a week, but have never been up the escalators to see what it’s all about before. 

Image (c) Newcastle Can

We were welcomed by one of the leisure centre staff, with a Newcastle Can T-shirt and a welcoming smile whose genuine enthusiasm put us at our ease. She explained what was going on and pointed us to the changing rooms. In a typical rookie mistake I left my phone in the locker – so have no photos to illustrate the experience. We were early for the first fitness class, so we spent half an hour in the gym where we were delighted to discover cycling for 30 minutes didn’t lead to us keeling over. We stuck to the cycles because we didn’t want to be too tired in advance of the class.

The class was Aerobic a GoGo Dancercise, something that took me and my partner way out of our comfort zones. The fact it was being filmed for the Newcastle Can documentary added to our nerves, and I think if my partner hadn’t been there I might have legged it! They asked if we were happy to be filmed, personally I’m not sure happy was the right word – I’ve committed to do this, I’m not going to back out now, but the idea of being hot, sweaty and uncoordinated on camera didn’t fill me with joy! 

The class was led by Dawn who was a fantastic instructor, clearly aware of the very mixed levels of experience in the room, and keen to make everyone welcome. She went through the instructions for each routine clearly, demonstrating the low and high impact versions and letting us know it was fine to rest if we needed to. One of the things that’s put me off attending exercise classes is the fear of being the only fatty in the room, the only one that can’t keep up, the only one puffing and panting while the lithe athletic types don’t break a sweat. It wasn’t like that. Dawn warned us at the beginning that we’d all be hot and sweaty, her most of all!

There were more mirrors than I’m comfortable with, but once we got going my eyes were on Dawn, my concentration on trying to get my body following the moves in time with the music and I didn’t have room for worrying. There was loud music, flashing lights and lots of moves. Some came easy, the surf board and shimmying I liked. Others were more challenging, getting my whole body moving in different directions was a challenge to my coordination. Most challenging was the Newcastle Can Can-Can, incorporating balance, rhythm and high kicks. I couldn’t keep up, but I was smiling. 

Image (c) Newcastle Can

After the session we went back to the gym and tried some more of the machines. And I found myself wavering. I’ve always thought gyms weren’t for me, that I’d be too out of place, too self conscious, too bored. But this was OK. I was definitely working muscles that don’t get a look in during any of my walking. Could I do this regularly?

Since I signed up to Newcastle Can I’ve lost over a stone. And although there have been challenges there’s nothing yet that has felt impossible. I feel healthier. People can see the difference. I think now I’m at the limit of what I can do on my own, and if I’m going to make bigger changes I need to take advantage of what’s out there. 

Image (c) Newcastle Can

The point of Newcastle Can is that we come together as a community, that enough people all making changes together can be more successful than struggling alone. I’ve known for years what I needed to do to get fitter, I’ve never done it til now. If I stop at the changes I’ve already made I’ll still be significantly healthier than I was. 

I suppose what I’m considering now is do I step up a gear? Is what I’m already doing enough, or do I do more? My worry is if I up the pace, make changes that are too dramatic, I might not be able to keep going I’ll feel like a failure. But how will I know how much I can do if I don’t try?