Type 1 Diabetes: What you don’t see

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Let me tell you what you don’t see.

You don’t see the impact the heatwave has on my daughter.  I presume most people think the bags under her eyes are because I let her stay up late or the hot weather is causing her restless nights.  You don’t see her sobbing without reason in a morning, you don’t hear her snap like a pre menstrual teenager because she is high.

Turns out, diabetes is a foe of the sun.

I would go so far to say; diabetes hates the heat and shows its wrath on my eldest child.

It’s hot, so diabetes waits until she is asleep, and then rustles revenge through her body, playing havoc with her blood sugars.

Have you ever tried sleeping after eating an entire bag of Jelly Babies, washed down with a litre of full fat coke?

I imagine that is what it feels like for Molly.

Sleep leaves her defenseless, unable to wash the sugar away with water, too still to burn off the excess high with exercise.

She wakes in the morning, still tired, confused as to why she feels like she only just climbed into bed. We explain she was high, all night, we tell her that her body stayed awake waging war with Type 1 Diabetes.

She looks at me, downcast, eyes desperate for a good nights sleep.  She doesn’t need me to tell her that her body didn’t win the war, she knows too well that the battle continues.

What you don’t see is the heat hiccuping into her insulin regime.  We are too new to this, we lack understanding of how quickly to change her levels, to alter her sensitivity, to prevent her dropping too low.

Three hypos yesterday, almost an hour of her day spent wobbling, shaking, crying without reason.  Another hour where I felt I had failed her in her care.

You see a seven year old girl with Type 1 Diabetes, suffering through the heat, trying to manage a chronic, life changing condition.

I see a warrior.

32 thoughts on “Type 1 Diabetes: What you don’t see”

  1. It’s like just when you think you’ve got on top of something, the rug gets pulled from under you. Lots of hugs to you and your whole family. I hope the weather calms down soon and your little girl can catch on some sleep. You are not to blame. Quite the opposite – you are doing a grand job!

  5. I also see a warrior Mum fighting against this defining her daughter’s life. It’s a strength we possibly all have as parents; hopefully most of us will never need to use it. xx

  6. Poor Molly thats all just rubish. I hope her levels settle down soon. Libby so far hasn’t been affected by the heat but she is on a rubbishy generic dose of insulin whilst we wait to be called by the hospital to join a carb counting course ( likely for Sept, so 6 months post diagnosis !) so we have been having horrendous hypos 2-3 times daily for weeks so now we are on school holidays the daily ice cream I let her have with her sisters, a cup cake at a party allowed between meals, an extra biscuit at grandmas have all served to keep her in range for the first time in weeks and weeks. These kids really are warriors, and though we battle with them to keep them on track , we really have no idea what they are going through. Big hugs to you all xx

      • She is 7 in 2 weeks. It doesn’t matter what she eats she is on the same dose at breakfast, lunch, and , dinner ! It’s crazy her appetite has changed in this hot weather so for example at breakfast I have been dosing her for porridge and she has been eating rice crispies . So frustrating we haven’t been given any advice of carb counting, they are insisting we wait to do the week long course. Poor kids levels are very unstable and she fed up with this Diabetes lark.

        • Molly was 6 when diagnosed, and we started car counting the moment we left the hospital – it makes life so much easier. We are under Berkshire care and our nurses are excellent. we didn’t go on a course we just saw the team weekly for four weeks etc.
          From speaking to lots of mums with type1 kids I realise how lucky we are with our medical team (they have been recongnised as being in top 5% of country)
          However this isnt helping you – all I can say is you don’t need a course, you need a book – Carbs & Cals – which has the carb content of everything and you need to program your blood sugar meter – we use an accu chek. That is what you will need support with.
          I am not surprised she is fed up – at least Molls can have an ice cream and we inject for it, or she can have a J20 with her dinner when we are out.
          Diabetes is crap!

          • I emailed you xx Our diabetes team are pretty good, also in the top 5 pf service providers apparently but they seem very hung up on people doing the week long carb counting course for which there is a huge ( 6 months) waiting list before we can control Libby’s insulin doses. They have given us NO information on carb counting in the meantime and so I haven’t a clue. Rubbish.

          • Blimey!
            Have responded to email – google helps with carb counting, plus is you will be there soon, sending love to Libby in the meantime x

  7. As a type 1 diabetic myself I understand what she’s going through. The important thing to realise is that you haven’t failed to care for her, it’s just the way diabetes can be sometimes.

    Dealing with high and low blood sugar levels can be difficult, but believe it or not, if she likes strawberries they’re fantastic. I eat them almost every day and do not have to use insulin (I’m on the insulin pump), because they can help to stabalise sugars.

    Hope she manages to cope with it. Good luck, all the best.

    • Thanks for the tip – we are on a waiting list for the pump, so please pop back and leave some helpful hints.
      BTW – Molly had lots of strawberrys today and until bedtime we have been quite balanced! 19 at 10pm x

  8. I’ve diabetes and have had for 12 years, contact your diabetes nurse and see if she’s any advice on adjusting the dose of her insulin (if she’s on novorapid it’s easy to adjust). The heat gives you a tendency to go high but it also causes your insulin to be absorbed more quickly. Continue to monitor her blood sugars regularly and for hypos they advise 15g carbs which is like a small glass of coke/lucozade or get those glucotabs and take 4. Then eat something like a piece of toast or few biscuits or something! Might help prevent those highs, hope it’s of some help!

    • Thanks Cathy, we are giving extra doses at moment, but it changes all the time, feels like a rollercoaster ride.

  10. I had no idea the heat had that effect. I hope you find ways of coping. Love to you all Jan. H x

  11. That’s so rubbish, poor Molly, I really hope it settles down for her soon. It’s reading these posts that makes me realise the two types of Diabetes are so different from each other.

    • Thanks, we have just dosed her on extra insulin, so here is hopefully a better nights sleep for her. x

  12. We have been going through the same think . My daughter is 14 diagnosed 8 years ago. The extremes of heat are playing havoc with her blood sugars. Lots of hyoos . A warrior mum and daughter I would say.

  13. You didn’t fail. You’re trying to manage a complicated condition and learning all the time – I’ve never heard about the heat effect, and I bet you weren’t warned either. Thinking of you and Molly, and hope you find a way to make it easier soon xxx

  14. Always find time for pleasure and rest. Dont think of trying to heal a ‘broken’ body but instead loving your body with what it needs to be healthy.

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