World Diabetes Day

World Diabetes Day is important to me because I have two incredible women in my life who are the mothers of Type 1 diabetic daughters.  I don’t think they get enough credit for the intensity and relentlessness of the impact of Type 1 on their lives.

The first I want to talk about is Sally.  She and I go back about twenty years.

Seven years ago, Sally was a high flying teacher.  She had been recognised nationally for her work, was leading on projects and initiatives and was on track to be something of a star in her field.  She worked long hours on the nights her daughter stayed with her father.

One night, her seven year old daughter went to bed with flu like symptoms.  A few hours later, Sally found her drinking neat cordial in the kitchen, assumed she was sleep walking and got her back to bed.  In the morning, she couldn’t wake her daughter up.  By the time they got to the hospital, Sally was told she had no more than half an hour to get people to the hospital to say goodbye, while the medics were trying to get drips into her daughter’s little feet.  Why her feet?  Because her blood vessels were closing down as she was in organ failure.  This was the sudden onset of Type 1.

Type 1 diabetes is not linked to age, weight, diet or activity level.  It strikes ruthlessly and largely at random.  It is currently incurable.

What Sally’s daughter has been through and will have to continue to manage for the rest of her life is beyond the comprehension of the mast majority.

At fourteen, she is now a teenager and wants to be doing what her school-friends are doing, but she can’t.  There are other parents who don’t want the responsibility of hosting a sleepover with a diabetic.  The highs and lows of her diabetes heavily impact upon her risk perception, and her memory.  Social media for example needs to be tightly supervised to avoid something inappropriate being posted while on a high that she won’t even remember posting when she comes back down.

She recently had to change schools, because her previous school couldn’t manage her diabetes.  They provided her with a cupboard in which to inject her insulin, and if she didn’t like that she was told she could inject in the toilets.  The staff did not check whether she was testing and injecting at lunchtimes, so she was lapsing into diabetic burnout.  This is apparently common in teenage diabetics.  They stop looking after themselves and stop injecting because they’ve just had enough of it.  The consequences can be devastating.  A boy at Sally’s current school missed his GCSEs as he was having part of his foot amputated.  He was fifteen at the time.

Sally’s daughter has been exceptionally lucky so far, but mismanaged diabetes at that previous school didn’t show up as falling asleep in class or even acting up.  It showed up in her wandering off the school premises and going into a big city by herself, while not in a state of full awareness.  It showed up in illness and epic mood swings.

The impact of these things on Sally has been immeasurable.

When her daughter went back to school after her original diagnosis, it was to a primary school with no experience at all of diabetes.  The staff didn’t want to be responsible, and didn’t want to help with the injections that would keep this little girl alive.  Sally was being called constantly to come to the school.  Her own employers lacked either empathy or sympathy.  They offered little to no support and she eventually lost her job.

Sally went from high flyer to supply teacher in a matter of months, losing chunks of her identity along the way.  Her confidence was destroyed, she was exhausted from getting up multiple times each night to check her daughter’s bloods and she eventually had a breakdown.  None of this was helped by her ex’s refusal to even do the basic training for the first two years.  Their daughter still avoids overnights there as she feels unsafe.

The stress of it all is chronic and requires management.  For Sally, there are the practical or logistical things like making sure the equipment and supplies cupboard is stocked with everything from monitors and testing strips to Lucozade and snacks, not to mention the insulin.  Then there are the emotional side effects.  It is utterly heartbreaking watching your child go through pain, frustration, fear and loneliness.  There are the middle of the night panics when you might question after dosing whether you put the numbers the right way in your calculation, followed by the guilt of putting your kid into a high because you’re so tired you messed up the maths.

The diabetes team are never surprised when Sally flags tantrums or mood swings or even physical lashing out.  The mental health teams apparently won’t touch a diabetic because the disease is known to have intense and unpredictable emotional side effects.  Known to the experts anyway.  None of this was mentioned in advance to Sally.  The impact of puberty has also been alarming, with hormones playing havoc with blood sugar levels.

She did say there are a couple of bonuses – you get very good at maths and your knowledge of the carb content of foods becomes encyclopaedic… but the fun bit?  Her daughter can guess the weight of things pretty much to the gram.  What a shame most of the “guess the weight” prizes are jars of sweets!

Sally seems from the outside to take it all in her stride, but she said this past year has been really tough.  “Each time you think you’ve got on top of the diabetes, it changes and morphs and you need to start again.  It’s been very painful as a family to watch her trapped in this bubble.  We can’t understand what she’s going through and she’s angry that we can’t understand what she’s going through.  And she’s angry because why her?” and it still often feels like a battle to get through the day.

The key differences are Sally’s partner, and her current employer.  Having a supportive partner with some experience of what diabetes really means has made a huge difference, but the relationship is still put under strain by the impact of the diabetes.  Then there is her current employer.  At interview stage, Sally told them her attendance was likely to be low because she has a diabetic child.  The school have been hugely supportive, and she is a favourite with the diabetic children in the school, because they know she will understand when they are struggling.

The impact of having an employer who supports rather than discriminates is huge.

The other supermum I know is Rebecca from our Thursday TAWN Team.  She was running a business with her husband when her daughter was diagnosed, also at the age of seven.  Six weeks later, her husband was gone and she was on her own with three children.

Like Sally’s, Rebecca’s ex hasn’t exactly risen to the challenge of being the parent of a diabetic.  The endless night checks are still falling on Rebecca’s shoulders alone, as is the maths of working out the carb content of food and drink and injecting accordingly first.  Balancing the empowerment of the eleven year old to work it out for herself with the mother’s need to keep her child alive is obviously no mean feat.

Rebecca juggles constantly.  She has chosen to go the self employed route, because of the flexibility it offers.  Flexibility is one of Rebecca’s key strengths.  She goes with the flow and as a family they will detour to go chase a sunset, or decide to go surfing at 6.30pm on a school night.

She told me there’s a saying among the mothers of diabetics that you need just enough selfishness to know you need to put yourself first to be able to deal with your children.  I confess I really don’t see much selfishness in either of them.

Hail the awesome mothers and the strong young women they are raising.