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Arianwen Morris

One Walk Bristol 2025

Help Arianwen raise £1000!

Support Kids With Type 1 Diabetes

On 7 June this year, myself, Matt, our son Osian (3) and our daughter Deryn (1) will be joining lots of other Bristol families on a 5 km walk to raise money to fund life-changing reasearch on type 1 diabetes (T1D) through the charity Breakthrough T1D. That's quite a distance for the little ones, but to challenge myself some more, I've decided to also attempt to run 400 km between now and then.

In December last year our lives were turned upside down when we found out Osian has T1D. This is a chronic autoimmune condition. Not to be confused with T2D, which is linked to lifestyle, T1D is hereditary and unpreventable. Osian's own immune system mistakenly identifies his own beta cells as foreign bodies and destroys them. Healthy beta cells produce insulin, which is needed to enable the body to make use of glucose for energy and growth. If glucose can't enter cells, it builds up in the bloodstream, causing damage throughout the body. Osian is currently in a so-called 'honeymoon period' during which he still produces some of his own insulin, but over the coming months he will become completely reliant on synthetic insulin to survive.

It was a huge undertaking to learn how to manage Osian's condition. It requires us to calculate the carb intake of all of his food and to inject him with the correct volume of insulin four or five times a day. He has to wear a sensor to continuously monitor his glucose levels and needs to have his finger pricked regularly to confirm that the monitor values are correct.

If he goes too low (a hypo), he's at risk of a seizure, coma or even death. If he goes too high (a hyper) he's at risk of life-threatening diabetic ketoacidosis. When he has any type of illness, he has to have his finger pricked every 2 hours day and night to check for ketone levels.

In addition to the day-to-day concerns, there are many long-term complications. Spending any time out of the range of a person who doesn't have diabetes (which is inevitable because so many factors affect his levels) increases his long-term risks of kidney failure, blindness, limb amputation, heart disease, stroke and learning/developmental delays (to name a few), not to mention the mental strain of constantly managing his glucose levels and the extra effort required to ensure that even every-day simple tasks can be undertaken safely.

Osian, Matt and I are regularly woken in the night by a loud alert requiring us to act quickly to prevent his levels dropping dangerously low. It's both mentally and phsyically exhausting. Osian isn't old enough to fully understand the implications, but he's had to be very brave to endure all of the needles, not to mention the unavoidable stress and restrictions around food.

Despite all of this, we're comforted in the knowledge that diabetes is a disease with rapid advancements in research. It has only been a little over 100 years since the first dose of synthetic insulin was administered (before then, T1D was a death sentence). Glucose monitors and insulin pumps have helped to increase the quality of life of millions of people with the disease, but there is still a requirement for burdensome human input in its management, and the long-term risks are still considerable. Most importantly, there is no prevention or cure for T1D.

Breakthrough T1D funds world-class research, supports the T1D community and campaigns for broader NHS provision of treatments and technologies.

This is where you come in. With your support and your generous donations, we can fund Breakthrough T1D’s important work and help ease the burden and potentially even cure this unforgiving disease.

Just £20 could help towards the next big T1D breakthrough. 

Whatever you can donate, it is really appreciated. Thank you!

Your support to my challenge has helped me provide:

2152

minutes of Breakthrough T1D research bringing us closer to a cure for T1D.

OR

1076

printed copies of Breakthrough T1D's Straight to the Point guide. It covers vital information for anyone living with T1D to help manage the condition.

OR

86

children to have an initial screening test to help to detect T1D in its earliest stages to prevent un-diagnosed complications.

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My Updates

Admin

Tuesday 27th May
The sheer volume of ongoing admin associated with Osian’s condition makes managing the disease feel utterly relentless.

I’ve already discussed nighttime checks, carb counting and obtaining prescriptions. Management of Osian’s condition also involves (but is by no means limited to): checking reports to ensure he’s in a certain range 70% of the time; feeding back data to nurses at the hospital; taking notes of when and what Osian eats and when he exercises, to feed back to the hospital staff and inform them on the appropriate carb-to-insulin ratios at different times of the day; reviewing his medicine stocks; arranging collection of sharps boxes; checking the expiry date of insulin and emergency hypo medications; making sure insulin that has been out of the fridge for one month is replaced; regularly making sure there’s enough insulin in each pen vial; replacing his sensor every 10 days; chasing Dexcom (the sensor manufacturer) for sensor and applicator deliveries; speaking to Dexcom on the phone when the sensor returns error messages; calibrating his app when it disagrees with finger prick glucose readings; replacing lancets in the finger pricker; regularly restocking a heavy bag of medical supplies and transporting it wherever we go; making sure the batteries in his glucose/ketone sensor have enough power; and charging his phone every day.

In addition to the daily management of Osian’s disease, there has been an immense amount of paperwork. I was off work for almost 8 weeks after his diagnosis because once we’d got to grips with the basics and Osian was finally back in nursery (at least part time), I had to put together numerous lengthy documents. 

First, there was an application for Disability Living Allowance. It’s wonderful that the government recognises our hardships and provides financial support, but boy do they make you work for it through lengthy questionnaires and supporting documents. It’s also been almost 6 months since Osian’s diagnosis and we haven’t heard back about the outcome yet. 

Next, I prepared an application for funding to support Osian’s nursery, since they initially didn’t have the staff to take him back for his usual hours. Alongside this was the requirement to heavily edit and add to Osian’s early years care plan, health plan and risk assessment forms to ensure he’d receive the correct care while at nursery. It's often not so clear cut what the best course of action is when trying to manage Osian's glucose levels. There are a lot of factors that can complicate decisions, so it's hard to know which circumstances to cover without making things overly complicated.

Osian starts school in September, so all of his forms will need to be re-written soon. They’ll also need to be replaced or amended if Osian’s care changes (for example, if he goes onto an insulin pump). 

Finally, I spent a lot of time researching EHCPs, but decided to hold off and see how the school copes with Osian’s care. If they don’t appear to have the resources to manage his glucose levels effectively, this would be our only option. It’s a notoriously lengthy and time-consuming process that often involves mediation and/or tribunal attendance.

The time pressures associated with these documents, along with the responsibility to ensure they cover all eventualities and can’t be misinterpreted, weighs heavy, but there’s also the huge financial impact of not being able to earn money while working on them.

We’ve already received starter forms from Osian’s future primary school, and they’ve asked me to provide information on any medications and special care needs. We also had to provide similar information to the after school club we’d like him to attend. It’s a bit like filling out multiple job application forms when most of the information is already in your CV and cover letter.

Another sizeable admin task is keeping informed about the latest advances in technology, and upskilling ourselves on those available to Osian. Since our initial 5 days of training in the hospital, we’ve read up on various sensor and pump options, had calls and online sessions to learn more about them and been present at training sessions at nursery. I even spent a few days in the nursery office shadowing the staff as they practiced. We’ve had phone calls or online meetings to train us in sensor application and accuracy, learn about two different pump systems and refresh our memory on the basics of diabetes management, as well as fairly regular discussions about the settings on Osian’s app (insulin-to-carb ratios and patterns in the data) and interrogations from the manufacturer every time a sensor has failed early.

We’ve also had online sessions with a psychologist to discuss the challenges we have around mealtimes and sensor applications, and every 3 months we have to attend a clinic at the hospital to check Osian’s bloods and review how appropriate his current management plan is. I’ve also already attended a meeting with staff at Osian’s future primary school and we have another booked in for September to help us set up care procedures specific to his needs.

Every day, I’m on standby for phone calls with specific queries about Osian’s care, so even when I’m not reviewing his glucose levels myself I’m keeping a close eye on what’s been happening so I can advise.

Type 1 diabetes is a chronic condition, and currently there’s no cure. Some days, the thought of having to continue with so much additional admin, and one day pass it all onto Osian’s shoulders, is overwhelming.

Replenishing Prescription Stocks

Friday 23rd May
Simply obtaining Osian’s medications has caused a hugely disproportionate amount of stress, given how simple a task it should be.

Osian has a prescription for 14 items, some of which he requires regularly and some less so. These include: cartridges of rapid-acting insulin for mealtimes and slow-acting insulin for bedtime; pens for administering insulin; needles to attach to the pens; safety needles for use at nursery; sharps boxes; glucose test strips; ketone test strips; lancets for the finger pricker; a gel to apply to his inner cheeks if he refuses to eat during a hypo; an injection to administer if Osian’s unresponsive during a hypo; adhesive to help his sensor stick to his skin; and spray to dissolve his sensor adhesive. Unfortunately, jelly babies aren’t available on the NHS.

The number of mistakes the pharmacy has made since December is bewildering. We had to visit them in person four times just to get his initial prescription filled, and with days between Osian being discharged from hospital and the pharmacy closing for Christmas we almost didn’t have all of the equipment we needed. Since then, we’ve had them hand over prescription orders with items missing or with only one box when we need multiple; they’ve forgotten to include the refrigerated items; they’ve not been able to provide the refrigerated items because someone forgot to put them in the fridge; they’ve sent our order to a completely different pharmacy for no apparent reason; and they’ve consistently supplied two boxes of safety needles with every order, even though we don’t request them and now have hundreds of them filling up our cupboards. They say prescriptions will be filled within a few days, but they’re rarely complete. I’ve started leaving it a week or more before I even attempt to pick them up, and still I might have to go back.

Our lives would be much easier if we could order Osian’s prescription items online or via the NHS app, but unfortunately this isn’t an option. There’s currently no way to add a child to an adult’s NHS login or to set up their own account. The only way to order for him is to visit the surgery and fill in a prescription form in pen or to call the pharmacy, both of which can be time consuming and result in more errors than if we could tick the items we require and how many.

A while back, I spoke to the pharmacy about how some items we require regularly have a limit that doesn’t make sense. For example, when I order ketone strips, which come in boxes of ten, they only provide one box, regardless of how many I asked for. If Osian were to get ill, we’d need to check his ketone levels every 2 hours, so we’d get through 12 strips per day. The pharmacy sent me to the surgery reception, who arranged for a pharmacist to call me back, who said they’d alter the repeat prescription. Next time I went into the pharmacy, they said there was a restriction on how many I could order. I said this didn’t make sense and they sent me to reception again. You get the picture.

It's perhaps unsurprising that one pharmacy visit led me to have what can only be described as a mental breakdown (I may have screamed in the street), followed by a very dramatic panic attack that left me fighting for breath. It had been a very tough few weeks. Still, if there’s ever a good place to have an episode like this, it’s at the surgery. I was seen straight away for once!

On top of our pharmacy woes, not all of his medications come from the pharmacy. We receive his sensor applicators, transmitters and adhesive patches separately from the manufacturer (Dexcom). They only send enough gear to get us through to the next delivery date, so every time a sensor fails early or a patch comes loose, we have to phone up and argue our case for a replacement. They also use DHL, who usually deliver to a bush somewhere within a 100 m radius, so I often have to go searching the neighbourhood with nothing to go on but a grainy image of some leaves. Our most recent delivery was of ten over-patches. I thought surely they’d come through out letter box because of their size, but it turned out they’d been packaged in a medium-sized cardboard box complete with air pillow protection!

If Osian goes onto a pump, I think all associated items will come from a different manufacturer, so there’ll be a lot to keep track of.

We also have to arrange for the local council to collect sharps boxes, keep track of which items we’re running out of, make sure everything stays in date, check the pen cartridges aren’t running low, replace the batteries in our finger pricker, replace insulin that’s been out of the fridge for one month and keep Osian’s phone charged. So, if my phone wasn’t already blaring out enough alarms because of the CGM follow app, I now have reminders in my diary to startle me on a regular basis too.

What A Cure Would Feel Like

Monday 19th May

Lack of Sleep

Monday 19th May
I don’t know if it’s peri-menopause, the aftermath of mothering two babies in quick succession, sleep deprivation or a combination of the three, but I find it difficult to remember a good 30% of the words I need. While writing these posts I find myself Googling the most basic words, and I’ve called Osian ‘orange’ twice in the past week. We thought we were tired after renovating our house during our littlest one’s first year of life, but it turned out it was possible for the chasm of exhaustion to descend many more realms beneath the surface.

For over a week after Osian was diagnosed, I physically shook from anxiety and lack of sleep. We didn’t have a grasp of how serious a hypo could be, how often they’d present, how quickly we’d need to react and whether Osian would wake up if he had one or just slip silently into a coma. Reeling from the news that he’d be affected by a chronic illness for life, may develop horrible complications and would probably have a shorter life expectancy, we were thrown headfirst into hours of training per day on the science of diabetes, carb counting, diet, how to administer injections, the technology on offer to help us manage his condition, and what to do when Osian has a hypo or a hyper or is ill. We took it in turns to spend the night in hospital with Osian while the other rushed across town to collect our daughter from nursery and then return her the next day.

In the weeks following diagnosis, Osian had between one and four hypos every night. It took a while for his care team to establish the appropriate doses of insulin, insulin-to-carb ratios (which change throughout the day) and correction factor. Eventually, things became more manageable and we learned to detect the signs of an imminent hypo and prevent it with a snack. Noone wants to have to provide care for someone throughout the night, but encouraging Osian to eat a few slices of banana and then go back to sleep is far preferable to treating a hypo, which involves pricking his finger in the dark, feeding him jelly babies, waiting 15 minutes, pricking his finger again to check his levels, then repeating this process if he’s still high or providing a follow-up snack of around 10 carbs if not. Try getting a 3 year old who’s suddenly high on sugar back to sleep after all that!

If his levels go above the normal range, we have to do a finger prick for blood glucose and (if this confirms high glucose levels) take a ketone reading from the same blood sample. When he’s ill, we have to take these readings every 2 hours, even throughout the night.

Now that we have a better idea of what we’re doing and feel confident to tweak Osian’s ratios ourselves, the main cause of lack of sleep is sensor inaccuracy (see my previous post on tech troubles). Perhaps once a week we have a bad night of being woken by alerts because his CGM is picking up false readings or has stopped transmitting data. It’s infuriating having to repeatedly go to Osian’s room to acknowledge notifications (or they’ll keep producing progressively louder alerts), finger prick Osian to confirm our suspicions that he’s actually fine, and then calibrate his device. Having to still breastfeed my daughter in the night only adds to the sleep deprivation. It feels utterly relentless. The above video is a fantastic representation of what it feels like to have type 1 diabetes or to care for someone with the disease. It beautifully portrays the peace that a cure would bring to the lives of those living with it.

The Honeymoon Period

Tuesday 13th May
One of many terms I wasn’t aware of being associated with type 1 diabetes is the ‘honeymoon period’. I’m sure any newly diagnosed patient will tell you it certainly doesn’t feel like one. As it turns out, for most people, it takes a while for type 1 diabetes to become fully established. The disease is an autoimmune condition that causes someone’s immune system to mistakenly identify insulin-producing beta cells as foreign bodies and attack them. For some reason, a small proportion of beta cells (often only around 5%) tend to keep fighting. The patient still needs to start taking insulin at diagnosis, but the amount they need to control their glucose levels will be lower until all of the beta cells have been destroyed.

To complicate matters, the length of this phase can be anywhere from weeks to a year or so, if it occurs at all. Its duration may depend on age at diagnosis, the severity of symptoms, and lifestyle. So, when you’ve just got your head around all of the aspects of managing the disease and how glucose levels are likely to respond to various factors, with no warning, suddenly it all goes to pieces.

We think Osian passed through the end of the honeymoon phase a few weeks ago. Over the course of a few days, he started to go really high after meals. I’m talking off the charts. The app stopped reporting values and just said ‘HIGH’. Cue more Teams meetings with the diabetes care team and a week of tweaking insulin-to-carb ratios, correction factors and target values. Some days, it went too far the other way and Osian had far more hypos than we’ve been used to lately. Thankfully, it seems to have levelled off now, although we’re actually a little disappointed that his requirements didn’t go up just a little bit further as he’s still a fraction shy of the minimum daily insulin dose to qualify for a pump. Anyway, it’s good practice for growth spurts and puberty, both of which will also wreak havoc with his disease management.

Tech Troubles

Wednesday 7th May
Although the technology used to manage type 1 diabetes has come a long way in recent years, it’s not without its challenges.

For the timebeing, Osian is using a continuous glucose monitor (CGM) in isolation (his insulin comes from pen injections). The CGM detects glucose readings in his interstitial fluid and transmits values to a mobile phone app via Bluetooth. A lot of Osian’s equipment is available via the NHS, for which we’re immensely grateful, but we had to fork out for a new smartphone, which it turned out wasn’t compatible with all of the apps we’d later need, so we then had to fork out for a second one.

In the days following hospital discharge, we were drowning in admin tasks and a lot of them were linked to technology. We had various apps to download, account details to fill in and settings to change on multiple phones. We needed apps on his phone to track levels, analyse data and calculate insulin doses, plus apps on ours to track the apps on his. We have alerts that tell us when he’s having a hypo or hyper, but these only work when our phones are on noise, so Matt and I had to go through all our other apps to make their notifications silent (you’d think there’d be an option to just keep our phones on silent and override it in one app, but alas, no). For the first few days, the apps on our phones would go to sleep, so we spent a lot of time Googling how to prevent this and speaking to Dexcom customer services, while panicking that we'd sleep through a hypo.

We also need to know that Osian’s phone will always have data, or our follow apps won’t receive information. I must have called EE at least ten times to make sure there’s a direct debit payment so we don’t have to worry about topping up before his monthly data runs out. Over and over, I’d receive a message one month later saying I needed to top up and would spend a stressful morning trying to resolve it on speaker while changing nappies and weighing out porridge oats.

Our main issue has been the inaccuracy of his sensors. Each transmitter can be used for 3 months, but the plastic cage it sits in officially needs replacing every ten days. Unfortunately, it’s rare for readings to remain accurate for this long. Often by day 8 or 9, his sensor will have come loose and the readings will start to jump about (see attached image). We’ve been woken up dozens of times per night because of this. Sometimes we’ll be alerted to a dangerously low reading only to find from a finger prick test that he’s actually riding worryingly high. Not only does this disrupt everyone’s sleep, but it could be dangerous to treat a hypo that isn’t a hypo and cause him to go even higher. When a sensor starts to act up, we also receive a lot of ‘no data’ alerts, and we have to get out of bed to acknowledge this on his phone or they’ll continue every 5 minutes.

When a sensor stops working accurately, we have to call Dexcom, wait on hold and then provide lot numbers, dates of application, error values and calibration information. They ask the same list of questions related to why it might have failed, which are never relevant, and eventually agree to send out a replacement. It’s happened so many times that Matt and I also had to take part in an hour-long telephone session to upskill us in avoiding inaccuracies. We weren’t thrilled to have to add massaging Osian’s sensor site twice a day to the ever-growing list of tasks. As I write this, I’ve just received a notification that Dexcom would like to talk to us again to follow up on the previous phone call. More admin. Yay. It’s a good thing I’m self-employed and therefore flexible with my time, although it’s getting to the point where there are no hours left in a day to earn any money.

Another problem with the sensor is that Osian understandably hates having them changed. The longer we can make each one last, the less frequently we have to pull a very sticky sticker off and push a new wire under his skin via a noisy applicator. He used to hate this so much it would take up to 2 hours for him to work up the courage. We even had meetings with a psychologist to figure out ways to encourage him to be brave.

Other setbacks of the CGM include that it takes 2 hours to warm up after each application, during which time we don’t receive any readings, and it transmits values from the interstitial fluid rather than the blood. As glucose is absorbed into the blood and then transported to other parts of the body, the readings from the interstitial fluid are about 15 minutes behind real blood glucose values. This makes things especially complicated around mealtimes, when a hypo alert might go off after he’s had half his dinner, so it’s hard to tell if it’s a real hypo, and even taking a finger prick reading doesn’t provide information on whether his levels are now rising or falling.

At some point, Osian will probably go onto an insulin pump. This is another device that attaches to the skin and receives information from the CGM, enabling it to deliver small doses of insulin and manage glucose levels more effectively. We were inititally excited about the prospect of an Omnipod pump, but found out after about 3 months on the waiting list that Osian didn’t qualify because his insulin requirements were too low. We then spent a lot of time reading up on the Ypsopump, an alternative that wouldn’t have received information from his CGM, but would have removed the need for pen needles and could have delivered smaller individual doses (see my previous post on why the minimum pen dose is a problem). The Ypsopump has tubing attached to a walkman-like device worn on a belt or in a bum bag. We had reservations about this, given Osian’s age and size. There were additional cons, such as the complexity of the controller and the requirement to change our home insurance. We were also informed that we’d have to change the pump every 3 days (as Osian hates sensor changes, we don’t think he’d have been thrilled by this) and always in the morning before breakfast (as if there isn’t enough to do before nursery with two kids under 3). Also, if there had been any problems I’d have to visit his nursery to replace the tubes (this isn’t something they train other carers to do). The final nail in the coffin was discovering that this pump was only available on a 4-year contract. If we’d known this from the start, we wouldn’t have even considered it, so a lot of time was wasted.

We hope one day to move onto the Omnipod pump, but even this isn’t without its problems. After all, it talks to the CGM to know how much insulin to give, and we’ve already discussed how inaccurate that can be! Also, even the best hybrid CGM/pump systems still require human input. For example, we’d still need to carb count and add this information to an app. I believe we’ll also need yet another new phone if he receives an Omnipod one day. Along with his insulin, hypo treatments, carb-counted snacks, finger pricker, glucose and ketone testing strips, needles and lancets, that’s a lot to have to remember to charge, replenish, pack each day and hand between carers. Fingers crossed we never experience a power cut or technical glitch!

The Joys of Carb Counting

Monday 28th Apr

Mealtimes. Where do I even start? They require an immense amount of planning and input. For every main meal, we have to calculate the carbohydrate content. This means individually weighing each carb-containing food type and then using nutritional information to work out how many grams worth of carbs are in each. Once we have a total for the meal, we input it into an app along with his current glucose level to calculate the dose of insulin we need to give him (if we make a mistake, he receives too much or too little insulin, with the potential to cause a dangerous hypo or hyper).

Next, we need to give Osian an injection of insulin 10-15 minutes before he eats his meal. In the early days, he’d hide under the sofa. He’s admirably receptive to his injections now, but we want him to have autonomy over them, so we wait until he says he’s ready, and this can often cause delays of 5 or 10 minutes, so knowing when to approach him can be tricky.

Injections aren’t the only factor that make timing his pre-food insulin difficult. The packages of some food types provide the carb content per cooked weight (as opposed to dry), so we can’t weigh it until it’s ready to eat. When eating out in a restaurant, we don’t have the nutritional information or portion size, nor do we know when the food will be served. If we make anything containing multiple ingredients, we have to weigh out his portion of the end product as a percentage of the total weight, then use this to work out how many of the total carbs he’ll receive.

The fun doesn’t stop when the food is served because the insulin Osian’s received has already started working to reduce his glucose levels, so he needs to get on with consuming the calculated number of carbs before he has a hypo. Preschool-aged kids are notorious for faffing about during mealtimes, and Osian is no exception. He repeatedly leaves the table, eats slowly, becomes distracted, refuses certain items or leaves his carbs until last (which constitutes a huge delay between insulin receipt and carb consumption). He sometimes gives his little sister some of his food, swaps his normal pasta for my gluten-free variety (they have different carb contents), drops food on the floor or covers his hands and face in yoghurt and then wipes half of it on his jumper. This makes it sound like he’s a total tearaway and we have no authority as parents, but the last thing we want to do is bark orders and give him a complex around food that could lead to an eating disorder in the future, so it’s a fine balance. We have to keep a watchful eye and use a plethora of tricks to encourage him to eat while enjoying his food. Sometimes it’s a race to finish, or we try to guess how many spoonfulls remain or what he’ll eat next. We pretend vegetables are chocolate, present food in the shape of a face and, far too regularly, spoon feed him.

While encouraging him is one thing, we can’t physically force him to finish his plate, so if he's reluctant we have the joyful task of guessing how many carbs he’s had and replacing what’s left with food of an equivalent carb content. Yay! More sums. The point is, we have to be really attentive both before and during a meal.

Another issue arises from the glucose sensor giving a reading that’s about 15 minutes behind the real value in his blood. This is due to the time it takes for glucose to travel from the blood to other parts of the body. If Osian’s levels are falling in the run up to a meal, we may need to give him some carbs to prevent a hypo, but then not enough time will have passed for them to cause peak glucose levels (and these won’t show up until later on the sensor), so what value should we put into the app when calculating his insulin dose? Normally, when the sensor alerts us to a hypo there’s a good chance he’s really having one, but during mealtimes the waters are muddied. If his sensor detects a hypo, but it’s 15 minutes behind and he’s been eating his lunch for the past 10 minutes, is he really having one? If we do a finger prick and determine that he is indeed having a hypo, will the usual treatment of 10 grams of fast-acting carbs, in addition to his current meal, make him spike dangerously high?

Sound complicated? There’s more. First, we have his little sister to think about. We want to ensure that she has a balanced diet, but she might eat more slowly than him. If he needs to get on with pudding because his levels are dropping, but we get him one before she’s finished her main, it’s a real battle to get her to finish her own meal without screaming to have pudding too. Second, we don’t just have to think about the carb content of a meal, but the speed at which different food types are broken down into glucose. A meal too high in carbs will cause Osian’s glucose levels to spike really high, so we have to include non-carb foods or carby foods with a low glycaemic index to flatten the peak. The recommendation is that one-third of a meal contains carbs. This shouldn’t be too difficult to achieve, but because Osian currently requires quite low doses of insulin (they’ll go up as he gets older), we often need to present him with a large portion of carbs just to match the lowest insulin dose you can possibly give: 0.5 units. Once we add three times that amount of food, we have an overwhelmingly large portion for such a small boy. None of the experts have been able to come up with a solution to this.

His low insulin requirements present another problem: snacks. If he needs to eat a huge amount of food to match the minimum dose of insulin, he simply can’t have a carb-containing snack without it accompanying a main meal unless his glucose levels are low and falling rapidly (for example, during exercise). If he’s hungry outside of mealtimes, he’s limited to things like cheese, peperoni, carrot or cucumber. If his friends are having a biscuit or breadstick, some birthday cake or even a glass of milk or piece of fruit, he can’t join them unless it happens to be time for a main meal and we can add it to his carb calculation. Imagine being so restricted at his age, when fairness and sharing are so important to a child’s sense of value.

To avoid the need to give insulin at around 16:30 on week days, we’ve been asked to provide Osian’s tea for nursery. This is more costly and time consuming and also means he has a measly carb-free snack when his peers have far more appetizing hot food prepared on site.

Finally, we also have to be really vigilant about encouraging Osian to drink water. It helps to flush out glucose when his levels are high (reducing the risk of diabetic ketoacidosis) and increases the volume of interstitial fluid, which helps his sensor to give more accurate readings.

In the weeks after diagnosis, we barely coped with this extra burden. Now, it’s amazing how much of it has become second nature and how many techniques we’ve developed to avoid the pitfalls, but it’s still incredibly draining. This is a recurrent theme with diabetes. In isolation, no one task appears to be that big a deal, but the energy expended on continuously managing it, and the monotony of it all, can really affect the mental health of everyone involved.

Learning to Trust Others With Osian's Care

Wednesday 23rd Apr

Today, I'll be discussing the second challenge we've faced with Osian's diabetes: learning to trust that he'll be safe in the care of others. We didn't get off to a good start with this.

It was astounding how many mistakes were made by the non-specialist nurses when Osian was in hospital. They miscalculated the carb content of his food numerous times, gave him too much insulin, took too long bringing him hypo treatments, and at one point completely ran out of insulin pen needles. I had to watch them in the corridor frantically calling other wards and then the hospital pharmacy to track some down, which was really scary for a mum who hadn’t slept for 3 nights and didn’t fully understand the implications yet.

After keeping Osian out of nursery for weeks due to Christmas holidays getting in the way of training his nursery staff, they eventually received a 1.5-h educational session from a paediatric diabetes specialist nurse. While very useful, it was clearly insufficient to cover everything, so I spent a week working from the nursery office so I could be on hand to oversee his care and answer questions. They’ve done an amazing job, but I still have to advise on a regular basis.

In September, Osian will start school and this is a very daunting prospect. It’s recommended that someone his age receives 1:1 care at all times since someone needs to check his glucose levels regularly, as well as giving him the appropriate snacks, injections, finger pricks and hypo treatments. I’ve been given no reason to think that his future school will do a bad job, but I’ve heard dozens of stories of school staff discriminating against children with diabetes or mismanaging their care to the point of threatening their lives. One child wasn’t allowed to go and fetch her hypo kit when her levels dropped dangerously low during a PE session, and another was given lunch without any insulin because the staff member didn’t know where their medication was located and thought it would be fine to give it later on! Kids are frequently excluded from school trips, told they can’t partake in sports, disciplined for using their phone (a very important tool in displaying glucose levels) and made an example of (“You have diabetes and you don’t even know what the pancreas does!”). One of the most ridiculous, and surprisingly common, complaints I’ve heard from parents of kids with type 1 diabetes is that their school has sent a formal letter out threatening exclusion due to poor attendance, despite all of the absences having been for signed-off clinic appointments and illness associated with their diabetes.

I'm waiting anxiously for term to start, to see whether the staff at Osian's school take his care as seriously as they need to. If not, the only avenue available would be to apply for an EHCP. These are notoriously difficult to acquire, especially for type 1 diabetes, as we'd be required to prove the link between the disease and educational attainment, which exists but it subtle. Why there isn't an alternative care plan for those with more obvious medical needs, I don't know.

And then there's the prospect of bullying. I'm sure other kids won't always be understanding, but one of the reasons we chose the school he's going to is because they have a policy of promoting kindness, respect and safety, so for now we'll keep our fingers tightly crossed for a smooth transition.

Coming to Terms with Our Son Having a Chronic Illness

Friday 18th Apr

In an effort to raise awareness of what it’s like to have type 1 diabetes or to care for someone with the disease, over the coming weeks, I’m going to run through what we’ve found difficult about it. It’s worth noting that the challenges vary hugely among different people and change greatly throughout life. Common complaints from older sufferers include: feeling self-conscious about the visibility of the sensor or pump and the conspicuous nature of sensor alerts; mental health problems due to the relentlessness of monitoring glucose levels; difficulty concentrating at school because of the effects of high and low glucose levels on cognitive function; falling behind due to school being missed for clinic appointments and illness; the difficulty of managing glucose levels when drinking alcohol; the hassle of preparing medications for holidays or long-term travel or worry associated with being further away from a hospital or care team; and concerns about (and the potential realisation of) long-term complications.

Since Osian is only 3 years old, we have our own set of challenges to contend with that we never would have envisioned before his diagnosis and the first is: 'coming to terms with our son having a chronic illness'.

Oddly, when I first learned that Osian has type 1 diabetes, I wasn’t overly affected by it. Perhaps I was in shock. I was definitely naive about the implications. Over the next 5 days, during which Osian had to remain in hospital not due to illness but because that was how long it would take to teach us his basic care needs (I’m talking full-day educational sessions from specialist nurses, consultants and dietitians), it started to dawn on us how relentless the management of this condition would be.

In isolation, many of the tasks associated with Osian’s care aren’t too cumbersome, but its relentless nature (constantly monitoring his glucose levels; having to carry his insulin and hypo treatments around everywhere; carb counting; and so on) weigh heavy. It’s a huge burden and responsibility.

And then there are the bigger issues like meal times, sensor changes and sleepless nights that sometimes make us massively late to work or leave us feeling mentally and physically exhausted.

Knowing that Osian simply wouldn’t survive without multiple insulin injections per day is horrifying. I can’t help but wonder what would happen if supplies ran short in another pandemic. I worry about the long-term complications associated with his condition. Will he have a shorter or lower quality of life? Will he have to have a limb amputated? Will he go blind? Will he suffer from erectile dysfunction? Will he develop renal failure? How will his health affect his future relationships?

It's a minefield of emotions. We're fortunate that people with type 1 diabetes can generally lead normal lives, but because Osian's disability is largely hidden from view it sometimes feels like the challenges he faces are trivialised in the eyes of those who haven't experienced it.

Mother's Day Weekend Break

Tuesday 1st Apr
We just retuned from 3 nights at Bluestone in Pembrokeshire. This was our first holiday as a family of four and the first time we've been away since Osian was diagnosed. It was magical to have some time away from our usual routine in a place with endless entertainment for the kids. With all of the swimming, inflatable assault courses, playgrounds, sand pits, treehouses and slides, his glucose levels were all over the place. We had to be extra vigilent and keep Osian's phone and hypo treatments in a first aid cave at the pool, but for the most part we tried to focus on making memories and not letting it dictate everything we did. I managed to forget to pack the weighing scales, but we got by with our rapidly growing experience of carb counting and guestimating the weight of food items by sight. Sunday was mother's day and I felt like the luckiest mum in the world.

Thank you for your support!!!

Thursday 27th Mar
Thank you to all of the people who've donated so far. We're overwhelmed by your generous support. It hasn't been the easiest 24 hours. We changed Osian's sensor last night and he really wasn't happy about it. I stuck the applicator to his skin and was poised waiting for him to tell me to press the button for around an hour and a half! I tried every technique I could think of to encourage him to go for it...hypnobirthing phrases, visualisations, praise for his bravery, information on why the sensor is so important. I showed him a social story made by his psychologist and videos of me overcoming my own fears by doing scary things like bungy jumping. By the time his sensor was on, dinner was cold, and upon finger pricking him to work out his insulin dose (the sensor takes 2 hours to give a reading after application) he was having a hypo we hadn't known about. He then needed his insulin injection, another finger prick to check the hypo was over 15 mins later and then his bedtime insulin. By bedtime (a much later one than usual), he was totally fed up with being a poked and prodded and looked defeated and sad.

Things weren't much better this morning. His sensor was causing him pain and we had to try multiple combinations of underpants and trousers to ease the discomfort. We got the kids to nursery at 09:45 rather than their offical start time of 08:00, and we have to pick him up an hour early on Thursdays because the nursery don't have the staff ratios to meet his increased care needs.

Anyway, rant over. We're going on holiday to Wales tomorrow, so I'd best go and pack!

A Bad Night

Wednesday 26th Mar
Last night, Osian's sensor decided to play up. This happens every 8 or 9 days, but we're only supplied with enough sensors to replace them every 10 days. Most cycles, they become so unreliable that we change them before the 10 days are up, which necessitates a call to the manufacturer to ask for a replacement and a grilling about why it might have failed early.

When it fails, it alerts us to a hypo in the night that isn't actually a hypo. Last night this happened three times. That's three loud alarms waking Matt, Osian and myself from a deep sleep, followed by the requirement to finger prick him to confirm his correct glucose levels. What's more, if the sensor says he's having a hypo and he isn't, we can calibrate it, but it asks for another finger prick reading 15 minutes later to safeguard him. That's a lot of waiting around and a lot of finger pricks for a tired little boy.

Still, he put on a brave face this morning, and I managed to get down to the river to run the first 10 km of my 400 km target. We'll change his sensor tonight to avoid more unnecessary sleep disruption.

Thank you to my Sponsors

£520

Garry

Thank you for all of your hard work with this.

£520

Garry And Marilyn Stephenson

£53.32

Tom And Hels

Wooo. Go gang! Next time Matt is going to run 500km right?

£53.32

Elin Morris

You are all amazing! Good luck with the walk and all of the running!

£53.32

Danny, Laura & Margot Ramirez

Wishing you guys the best for your walk and sending all our love. Xx

£53.32

Lucia Evans

Loads of love to you all and good luck for the walk, Cia and Sash xxxx

£52.12

Bex, James And Leon

Good luck for the walk... and all that running! Lots of love from us all. xxxx

£50

Chris Roche

£50

Ruth & Roman Bindas

Much love to all of you, from Team Bindas 💜💜💜💜 xx

£50

Adam Fradgley

Thank you for sharing your experiences dealing with this decease. Sending love and best wishes

£50

Vic

Go all of you! Good luck, have fun. Ari, you have already smashed the running! Xxx

£41.83

Andrew Rayner

You guys are legends, well done getting through everything and raising awareness of this condition.

£32.23

Ana & James

You guys are amazing! Well done, you will smash it!

£27.05

Lou Muttram

Go Osian! (And Ari, Matt and Deryn :))

£27.05

Sam Hammett

£27.05

Stephanie Markham

I was so sorry to hear this. I hope this can go some way to funding research and making this incredibly hard journey a little easier on you all xxx

£27.05

Mank Short

With everything you guys are facing. It is amazing you are doing this. Big love to you all

£27.05

Fern And Family X

Great plan, we'll done x

£27.05

Denise Allnutt

£27.05

Sophie Baugh

Wishing you lots of strength as you continue get to grips with everything T1D throws at you. It’s amazing you’re doing this fundraising on top of it all — hope this little donation helps. Love from all of Freddie's family (nursery) xx

£27.05

Cheryl Routley

Good luck guys. Raising money for research is so important xx

£26.45

Fiona R

Wishing you all the best for your walk and your battle. X

£26.45

O

£26.45

Alice Smith

£25

Tom Curson

£25

Joe Short

£21.84

Louisa D

Sending love, xx

£21.84

Kelly Lindsay

£21.84

Veronique Cecchini

£21.84

Oana Standavid

You are all amazing for going through this and coming out the other side. Osian is so lucky to have such dedicated and wonderful parents!

£21.84

Daniel

£20

Gemma Hyam

£15

Jade Juckeston

Wow this sounds like a great cause to be raising for. I was very moved to hear Osians story, you guys have been through so much with this and with it being lifelong I can imagine it still feels daunting. I admire your openness and motivation to raise money for charity whilst still struggling through it, and I'm sure this blog will reach people who will really benefit from reading it. Jade (Hazel and Willow from Rocking Horse's mum)

£12.40

Kat

Good luck to you all, I'm sure you will smash it!

£12.40

Madeleine Armstrong

£12.14

Vaneeta Sadhnani-henry

Sounds like you're coping remarkably well with a very difficult situation. Sending you all love and well wishes

£11.09

Suzanne Jarvis

Sorry to see this news Ari. Good luck for Osian on his walk

£11

Edward Wellmore

£11

Neaera Fletcher

With love and best wishes Arianwen- but you are resilient if I remember correctly - from one mum to another xxx

£11

Megan Eve

£2

Anonymous