In the driving seat

I’ve had something on my mind, and some #dblogweek posts have got me thinking about it more. By writing openly about the traumatic side of Type 1 diabetes, am I unwittingly casting my son in a Tiny Tim role? Is the trauma about me or him? Will the adult him thank me for raising awareness or curse me for exposing his frailty as he tries to succeed in the world?

Reading Frank’s blog this week sent me into a frenzy of proofreading to eliminate over-dramatic language. Then Typecasted Diabetes reassured me that it’s “ok to be honest.” By its nature, this blog only offers one perspective on our lives, which are full, fun and at times frustrating for reasons quite apart from T1D, but where should I draw the line?

Driving up the windy, narrow backroad to my son’s school to drop off his forgotten packed lunch (87g carb, square wave over 30 minutes please), it became clear.  Managing Type 1 diabetes is like driving a car.

Every time you drive your car, it’s potentially life-threatening.  You need to watch the speed, the fuel gauge, the terrain, other road users. And still unexpected potholes or leaping deer could cause unavoidable damage.  As an adult, I rarely think that if I get into my car I could die, even though this would be the inevitable consequence of losing concentration.  But if your child were to get behind the wheel, to career along at 90 mph in a Caterham kit car, your focus would inevitably be on the risks.  You’d be shouting “stop, stop, get out, make it stop!”

The metaphor extends further.  Adults with Type 1 can go about their normal lives, they can achieve to their full capability, so long as they have mastered the art of driving their particular T1D vehicle, so long as they have their annual MOT. I strongly believe they deserve every credit for this in the same way my son does. Could you do 100 multiplication and division sums with 100% accuracy in three minutes or sing a psalm in Latin with near perfect pitch whilst off-road driving? That’s what he does every day.

We’re lucky.  We now have a sat nav and automatic transmission in the form of our continuous glucose monitor and insulin pump.  The CGM is a tool to help guide us through the mountainous terrain of the body’s fluctuating insulin requirements. The pump responds to our instructions whilst avoiding the clutch/gearstick clunkiness of multiple daily injections. Yet they are no substitute for constant vigilance.

However we’re still learners, not quite qualified for our P-plates.

So if you see my boy skidding past, top down, singing “sed et si ambulavero in valle mortis non timebo malum quoniam” and dividing 144 by 12, watch out for him.  Give him a clap.  Make sure he doesn’t crash…

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Correcting an adrenalin high with an injection whilst off-road mountain driving a 4×4
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Navigating the track’s easier with a twin brother for a co-driver

Have you heard the one about Bob?

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Sometimes I’m glad I’m me. When my son asked me about a joke he’d heard some older boys telling (see left), I gave him the long answer. “There are different kinds of diabetes. One tends to affect younger people and is genetic; the other happens to anyone but more in larger, older people. Both are serious, so it’s not a very good joke.”

Humourless? Pitched to high for an 8-year-old? Maybe. But a week later, he was in a hospital bed, being asked by the doctor: “have you ever heard of diabetes?” “Yes, there’s this joke, but Mummy explained…”
Suddenly the diabetes jokes are everywhere. I’ve described trying to challenge them as an endless game of Whack-A-Mole. I’m learning to pick my battles but I lost my sense of humour badly recently over two jokes in the BBC’s EastEnders. Within a couple of months, a child character with cystic fibrosis “joked” about getting diabetes from eating biscuits and another character said: “If the kids don’t give themselves diabetes, it’s not a good party, is it?”

Facts aren’t a good defence against humour, but it might help to explain that around half of people with cystic fibrosis may develop CFRD (cystic fibrosis related diabetes) because of their condition.  With reference to the second incident “kids” almost exclusively don’t get diabetes from lifestyle choices, and if they did, is it really that funny?

Full disclosure.  I used to work at the BBC. I sat on the Diversity Committee for Drama, Entertainment and Children’s programming. I set up workshops to promote on and off screen diversity, forged links with disability organisations, the list goes on. I KNOW how much the BBC cares about this stuff, how tight the guidelines are on what you can and can’t say. The BBC is staffed by people like me, who attempt to educate, who give their children the worthy answer to school yard jokes.

That’s what gets me. Why is it alright to joke about diabetes in a way that it isn’t about other conditions and disabilities?

My brave, talented child will undoubtedly achieve in life but he now has the burden of drawing blood ten times a day, injecting himself six times, coping with highs and lows, weighing or assessing everything that passes his lips, dealing with the shadow of  complications. It’s an extraordinary, parallel world.

But contemplating that his condition is perceived as a joke, wrongly synonymous with obesity? That’s when I knew I’d fallen down a rabbit hole. And that Queen Beeb, paragon of worthiness, is cackling too? That’s grotesque: it’s beyond a joke.

Ofcom cleared the BBC of the EastEnders complaints.  The BBC’s editorial guidelines prohibit content which causes offence or harm without a strong justification, so how Ofcom reached its decision I’m not sure.  The BBC has promised to work closely with diabetes charities in the future: a tentative positive.

But I can’t help thinking that ignorance had the last laugh.

My name’s not Bob…

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Smiling again

I’m late coming to #dblogweek as I’m struggling to get the figures I need for my piece on CGMs. Then something happened which is more personal that the universal themes of the week, but which I wanted to share.

We’re still two months away from my son’s first “diaversary” (the date of his diagnosis). It co-incides with my daughter’s fifth birthday so it’s going to be a challenge.

But my son has had Type 1 diabetes for more than a year and every point of the summer term calendar is a reminder of how sick he was, and how we failed to get him diagnosed despite multiple trips to the GP.  The hayfever which masked his fatigue and breathlessness is back; everyone’s drinking more in the heat. The annual choir tea party comes round again and I remember how ravenously he demolished the cakes (“polyphagia”, or excess hunger, was his main and not well known symptom alongside fatigue).
IMG_1335-2Last summer term his school took photos to use on their website and as marketing shots. My son features heavily, something this proud mum would love, but in every photo I can see how ill he is. His glassy eyes, impish look and high colour I know so well now as “tells” for high blood sugar. All term he teetered on the brink of the ketoacidosis that landed him in hospital on the first day of the holidays with a blood sugar of 50 odd, a drip in his arm, a lifetime diagnosis and the knowledge that a few days more and we would have lost him for ever.

The photos have been so painful that I’ve avoided the school website. But today our local magazine popped through the door, and fell open on a page with this picture.  And the first thing I saw was the smile! Yes, he’s as high as a kite, yes he’s ill, but he’s happy!

Critical life events make you revise history.  For the last 10 months I’ve had to shut the door on the past.  Every memory of my children’s early years has been consigned to a box labelled “before”, too dangerous to be opened as it brings into focus the difference between “now” and “then”.

But the magazine that burst through the letter box today, with that smile… Maybe the time is right to go rummaging through that boxful of memories, to start to try to reconcile the good things of the past with our present. Even to think about the good memories we’ll create in the future.

Warning signs of Type 1 Diabetes  (external link)

Being diagnosed with Type 1 Diabetes (link on this blog)

Testing, testing…

It’s been a testing week for some UK children taking their national curriculum assessments with a new syllabus. Some parents have registered their disgust for the tests and curriculum by staging a “school strike”  in protest at the loss of childhood.

(For the benefit of my (4 or 5) international readers, the UK has recently changed the elementary and middle school curriculum to focus on grammar and back to basics. The test for 10 and 11 year olds is sampled here – give it a go. )

My son was at home for different reasons.

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He started on an insulin pump last week: a device which delivers precise, fluctuating amounts of insulin continuously through a cannula mimicking the pancreas (which has been destroyed in an autoimmune attack in people with Type 1 diabetes). I’ll blog about the pump soon, but at the moment it’s like having a newborn: on top of waking every two hours to test his blood glucose, we are feeling a mixture of apprehension, frustration, exhaustion, pride and sense of wondrous possibility best kept in the family unit for now.

We have arranged to home-school until we gain some confidence in our son’s levels. So as well as learning about cannulas, basal testing, multi-waves and square wave boluses, I find myself investigating a whole new un-encountered language.

[I should say up front that I have nothing but respect and admiration for my son’s school and teachers so anything I say here is not a criticism of them.]

In the past few days, alongside multiplying decimals (counting carbohydrate has made us quite good already: 170g carbs at 18.3g per 100g anyone?), I have resorted to Google with questions including:

  • what’s a parenthetic comma?
  • is ‘and’ always a connective?
  • are verbal connectives a thing?
  • conditional – tense or mood?
  • can you have connectives at the beginning of sentence?
  • And, what the jeff are ‘strong’ verbs?

My son is 9. I am 43 and I have a degree in English, a post-graduate diploma in journalism and I was paid to write for more than 15 years, latterly for some big names in broadcasting, I’ll have you know! I have never needed to distinguish between a “subordinating conjunction” and a “preposition” (presumably like the unfortunate minister for schools ).

IFullSizeRender-7’m from a generation whose knowledge of language was osmotic: gleaned through reading, discussing and experimenting.  My 9 year old boys love to read. I overheard one of them yesterday telling my 4 year old girl that reading is “so much better than films as you can conjure pictures in your own imagination”. They burn with a passion to be Rick Riordan or John Flanagan; to express themselves.

Their grammar needs to improve.  Presented by my son’s teacher with a piece of his almost entirely unpunctuated writing, I now recognise it was unhelpful to describe it as “Cider with Rosie written by the bastard son of e e cummings and James Joyce”. So I’ve made sure the boys know grammar is a building block to the next level of writing, without which you will never be taken seriously.

But “modal verbs”, “conditional clauses”, these are not building blocks. And learning to write is more organic and fluid than construction. Sub-editing is an important skill, but continuous monitoring and using a starting point of technical detail will not deliver growth.

As an English graduate, my thoughts turn to similes. The effect of type 1 diabetes is like the effect of the literacy curriculum on our children’s education.  For my child, nothing is natural. He watches and assess functions that should happen without thought. By analysing, dissecting, testing we are attempting to mirror something that, in different circumstances, would happen through the miracle of development. We break the day down into chunks and try to build it back up again.  And it’s time consuming, mind absorbing stuff, squeezing out time for play.  The consequences of failure lurk constantly in our peripheral vision.

Nothing we do will replicate the human pancreas. No matter how good we are, no matter what technology we use. This is the message repeated to me by medical professionals, perhaps sensing that my intense need for knowledge and data is an attempt to achieve a god-like perfection in supporting my son’s health.

We are not the sum of our parts

The difference is we have no choice.  What nature gave us is broken. Bust. Kaput. Whether  you think this approach to literacy is right or not depends on how broken you think educational development is, how little faith you have in the child’s intrinsic ability to learn self-expression. But trying to build a wonderful whole from the component parts will always fall short, for either child literacy or child health.

 

[Incorrect use of connectives as sentence openers with no corresponding clause in this piece is entirely deliberate.  Other grammatical errors may also be so…]

 

 

 

 

 

Let it be

I’m always nervous when one of my children performs. Maybe it’s my childhood memory of the burning shame of forgetting my lines, or the sight of them so small, so vulnerable on a big stage, bursting with pride to take part: I’m one of those mothers staring intently at their child, mouthing their words, on the brink of an embarrassing loss of self-control.

A couple of weeks ago I lost it completely. My boy was in the final of his school singing competition and as he took to the stage I shook uncontrollably. By the time he reached the final verse the tears were flooding down my cheeks with nowhere to hide.

It was an emotive song – one he’d loved since a little boy – and the words were particularly relevant to us now.

 And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be.

But few people in the room knew just how pertinent. My boy had been struggling with cold viruses for the past three weeks. Simple enough childhood illnesses but in a Type One Diabetic, the body’s response to illness results in barely controllable blood glucose.

A virus means a round the clock battle against hospital admission for life-threatening Diabetic Ketoacidosis (DKA). During this period the press reported two tragic cases of young people in the UK who lost that battle, and their lives.

His insulin needs had increased by 250% (and bear in mind that normally an extra 25% could result in a hypoglycaemic coma if uncorrected). He has to inject every two hours day and night, with constant watchfulness in between.

The night before the competitions his bloods shot up to 21 mmol/ml (normal is up to 7). They were down again by morning, so I reluctantly let him go into school. As I left to  watch the competition, school called, he was back up to 12 and what correction should he have? I made a conservative choice to try to avoid him crashing with hypoglycaemia before it was his turn to sing.

As he took to the stage I knew he was still high. The effects of high blood sugar include lack of concentration, severe thirst, crashing fatigue and (in some people) anger/aggression. His symptoms include raging hunger, breathlessness and a crazy look in his eye.

He sang beautifully, but I could hear the hyper all the way through. And that, dear friends, was why I lost all control.

At diagnosis they tell you that Type 1 Diabetes won’t stop your child from doing anything.

Today’s info graph from Diabetes UK reiterates that it “shouldn’t stop anyone from enjoying a full and active life”. This is true. But it doesn’t reflect the work that it takes to do so. The Type 1 diabetes forums are full of children excelling at sport and dance: their parents share their stories to inspire, but also because others there will know how precarious each day’s achievement is.

Three days ago, after a week of near perfect bloods, we were stalled. Bouncing between extreme highs and a crippling 2.1 low.  The next day we climbed a mountain, my pockets full of the paraphernalia that means we can respond to an emergency while we wait for an ambulance in the worst case scenario.

We’re not cowered by this condition. But achievement looks different now.  Things might not be how they could have been, and we just need to Let it Be.12932638_10155134105223973_5239222619442429662_n

Decision Maker Tells Mother Her Daughter’s Terminal Organ Failure Is ‘Your Opinion’

I’ve written a blog post about this, but this is the main story so on reflection here is a reblog.

Same Difference

I found this heartbreaking story on the ATOS Miracles Facebook page. I usually share the links to Facebook statuses directly from Facebook, but this story is so heartbreaking that I don’t want to take the chance of anyone not being able to read it. Please share as widely as possible.

This mother talked to the Decision Maker last week and told him, “my daughter is dying from organ failure”. He said ‘that’s your opinion’. Her daughter had just been turned down for PIP for the third time. She has had a lifetime of health problems which have spread to many other illnesses. Aged 28 she now has end stage organ failure and will die without transplants. Whether a donor comes or not she is living the quality of life of someone at the end of their life. No PIP.

To anyone terminally ill your claim should get fast-tracked with a…

View original post 1,202 more words

Benefits for humanity

This is a tricky one to write. This is the story of a young adult with Type 1, who has late stage kidney failure, being refused PIP, the new adult equivalent of DLA (Disability Living Allowance). Her battle is an extreme example of one which is being fought everyday, as unqualified assessors working for a private company (ATOS) make decisions about who receives financial support. A company target driven to reduce payments, and one which has already had to buy themselves out of their “fitness to work” contract due to heavy criticism.

Please also understand, the severity of this young woman’s complications are not necessarily a reflection of her commitment to control her Type 1.  Unfortunately even excellent control only reduces the likelihood of complications and almost all Type 1s will have some form, for example, of retinopathy after 20 years.  (By the way, screening for retinopathy was reduced from yearly to biannually a week ago, a nice way to half costs in the short term).

Her story is not uncommon. Whilst all children under 12 with Type 1 should be eligible for at least middle rate DLA, claiming is a science, requiring research, time and support simply to fill the form.  A luxury many vulnerable people and their carers don’t have.

 

My brave, bionic boy

At our first visit to the GP, post diagnosis of type one diabetes, to get our repeat prescription confirmed, the GP told my newly diagnosed 8 year old that:

  1. The test strips we were prescribed in hospital were too expensive and he had to use cheaper ones;
  2. He shouldn’t be testing more than a couple of times a day anyway; and
  3. His fingers would turn to mush.

The first two points were clinically incorrect to the point of being life threatening.  But I will concede the third one.

So today was a huge day in our house.  My brave boy has become semi bionic with a Libre sensor in his arm. This enables him to swipe a reader over his arm to find out his blood glucose level, saving some of the 12 blood finger prick tests he does daily.  More importantly for us, it may allow him to sleep through his 11 pm and 3 am blood tests as the swiping is painless, giving him the first full night’s sleep he has had since diagnosis nearly six months ago.

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Sensor with camo rock tape!

The Libre isn’t available on the NHS, so we’ve funded it ourselves.  The reader at just over £100 is reasonable.  The sensors, which last us to two weeks, are around £55, so a minimum cost of £110 a month.  To allow an exhausted child to sleep, that’s worth it to us.  Last Monday, watching him hacking at his calloused fingers desperately trying to draw blood for 20 minutes after a freezing rugby match cut the circulation to his capillaries, I looked forward to this moment.

It’s our fourth go at inserting the sensor: the first three were faulty.  Despite drawing blood from his fingers so often, and injecting himself five or more times a day without fuss, sensor insertion was terrifying for my son, recalling the cannula insertion at diagnosis. Delays in replacements have allowed our anxiety to build for a month.  Unable to believe the failure rate, I started to doubt myself and my ability to follow the process properly. Never have I felt so alone. Because the NHS doesn’t fund the sensors, there is no medical support.  Neither my son nor I are quitters (we have the “dog with bone” gene), but we would have given up if my plea for help on the internet hadn’t been answered by a very kind Libre-using soul who sat with us through this fourth attempt.

The JDRF estimates that 99 per cent of diabetes care is self management.  We currently have one fifteen minute appointment every three months – a paltry 0.01 per cent of time we live with Type One.  We also have telephone or text contact with our specialist nurse every month or so, when I get really, really stuck. He is amazing, but his time is incredibly precious as he deals with the newly diagnosed and trains schools as well as supporting the 200 plus children with diabetes in our area.  We choose responsibly our calls on it.

This sensor, if it works, will save the NHS money, not only in test strips (I’m expecting a thank you card from that GP).  Because it provides better data it should help with the ongoing battle of blood sugar management, potentially reducing or delaying complications that contribute to the big, fat NHS diabetes bill you may have read about.

But for us, today, we’re not thinking about the money we’ve paid out or the costs we’ve saved the NHS.  We’re thinking about the kindness of relative strangers who pick up the pieces when no other help is available.  And most of all:

we’re imagining the dreams of a little boy who sleeps for the first time in half a year.

 

 

Please sign this petition https://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs if you support cost-neutral improved care for people with diabetes.

 

 

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