Filmed especially for CWDUK Phillip Schofield talks Type 1 and what it is like to be a son and a brother to someone with Type 1 Diabetes.
This video was produced for Art Antiques London Party in the Park 2012. JDRF was the sole charity beneficiary of the event on 12 June. For more information about JDRF, the type 1 diabetes charity please visit www.jdrf.org.uk.
Intended to inform those who aren’t aware and to make the T1 community (including parents and siblings!) have a giggle.
Most of these things have been said to me throughout my life. So here’s a list of 20 things to avoid saying, why and what goes through our minds when it’s said to us.
1. ‘Ohhh you have diabetes? So that means you can’t eat sugar, right?’
Yes I can eat sugar, yes I can eat carbs, yes I can eat food. It makes me laugh how no one would comment if I were to eat a pizza and chips with garlic bread in front of them, but if I were to have a small packet of haribo – many people would ask me this question in a panicked way, as if I’m unaware that I’m putting sugar into my body. Sugar and carbs are in everything: pasta, apples, sweet potatoes and milkshakes – I carb count and give the adequate insulin for whatever I eat.
2. ‘My gran/cat had that. They had to have their leg amputated/went blind/died.’
Thanks for telling me that. Yeah, I’m fully aware that I’m at higher risks for diabetic retinopathy, diabetic neuropathy and many other things. So, thanks for reminding me of the serious complications that I’m at a higher risk of because it makes me feel great, not.
3. ‘I could never inject myself like that, needles scare me too much.’
Oh dear. I believe that if it were a choice between life and death, you would. Trust me – I don’t like injecting, in fact it terrifies me. But looking at the consequences of not doing the needles, makes me realise that having to go through the experience of a needle every 2 – 3 days is something I’m happy to do in order to stay alive.
4. ‘I’m so tired, I woke up at 3 am this morning!’
I understand it’s rubbish waking up at 3am. Trust me, I really do. In fact, why don’t you go and get yourself a coffee and have an early night. You’ll feel so much better after a full night of non-interrupted sleep. I’ll be up at 3am tomorrow night. And the night after that. And the night after that. And every night for the rest of my life until they discover a cure. I’ll be up at least once, generally twice every night of my life to check my blood sugar and treat/correct. Oh, you weren’t aware that I did that every night? Ahh, well, next time you’re up at 3am, think of me because it’s highly likely that I’ll be up too, squinting at my diabetes charts with my lamp, rubbing my eyes furiously to try and wake myself up.
5. ‘Should you be eating that? Are you sure?’
Okay. I have to carb count everything I eat. I have to consider how much fat there is in it and what kind of bolus I should be doing. Should it be a normal bolus or a square wave? Or maybe a dual wave seen as variety is the spice of life. Every time I eat something, I have to consider what the carbs are. Furthermore, I live in a house where not only am I type 1 diabetic but my mom has coeliac disease. Food is a major thing in our house. So please don’t comment on whether I should be eating what I’m eating – I think about food enough as it is.
6. ‘But Halle Berry cured herself, why can’t you?’
There is no cure for Type 1 diabetes. It’s that simple. Do you seriously think I’d be stabbing myself with needles so frequently and doing blood checks on 7 – 10 times a day if there were a cure? There is no cure. Don’t believe everything that the media tells you.
7. ‘Well, it could be a lot worse. At least all you have to do is have insulin.’
Oh but, it’s so much more than that. Everyone who is non-diabetic or not a D-mom/dad or sibling does not see the work that goes into what I do. It’s not just injections; it’s carb counting with a calculator at every meal, dealing with stroppy receptionists who don’t understand that insulin keeps you alive, remembering to order prescriptions, remembering to pick up prescriptions, dealing with companies that send you the wrong orders (or accidently ship your orders to Italy!), logging all BG readings, going to clinic every 3 months and being weighed/measured/having blood pressure taken/having a hba1c done/undergoing interrogation for your past 3 months of readings, having an insulin pump attached to you 24/7, going hypo from simply studying and using brain power, catching insulin tubing on doors/your own hand/getting it mixed up with your iPod headphones, going hypo, going high, treating and going lower, correcting and going higher, having ketones, dealing with the effects of exercise, dealing with the effects of hormones, dealing with the effects of stress, dealing with random highs and lows that life sends you, breaking down from time to time through the sheer stress of it all, working doubly as hard to get your essays or homework due in on time because you keep going low from studying, trying to second guess what will happen and failing miserably, getting up at least once every night, experiencing hypo-hunger (unless you’ve had it, you’ll never understand this), trying to explain diabetes to people that don’t understand, asking yourself why you have it, separate exam arrangements at school and uni, doing set changes at 3am, practically crying and hugging people when they ask you ‘do you have type 1 or type 2?’, ‘NO DELIVERY’. And even then, that’s only the basics.
8. ‘I had to have my blood took at the doctors today. Needles freak me out so much, it was horrible; I still feel faint.’
Needles suck. The bottom line is that, most people hate needles – I understand that it’s normal to hate them and I can appreciate that if you don’t go through the ordeal often, it can be scary and painful. But please, don’t go on about it for ages to me. I’m a needle-phobe myself, I hate the days when I know I have a set/sensor change. I go through that ordeal every 2 – 3 days, so whilst I appreciate how awful it is for you, I don’t tell you how stressed/awful I feel after doing my set change every 2 – 3 days so please try to avoid telling me every detail of how painful and awful your one blood test was. It only reminds me how awful my sets can be.
9. ‘But you don’t look fat.’
Type 1 diabetes is not caused by being overweight, end of story. No questions, it’s just not. Type 2 is more inclined to occur in people who are overweight, but this isn’t always the case either. Don’t assume my diabetes is linked to my weight, it’s offensive and will give me a complex.
10. ‘Why did you eat so much sugar as a kid?’
I didn’t. As previously stated, diabetes isn’t caused by being overweight. Neither is it caused by the amount of sugar I ingested as a child. Again, this is an offensive assumption that can lead to embarrassment about weight/food and give us a complex. Try to avoid the sugar/weight card.
11. ‘I thought I’d better not offer you a sweet, I mean, you can’t eat them, right?’
Why make that assumption without asking? Yes, I can have the sweet. I give myself the adequate insulin and I eat the sweet. Shock, horror I might even eat two sweets!! Try to avoid making assumptions like this – I’ve had this happen to me and it makes you feel left out and different.
12. ‘Type 1? Is that the bad kind?’
I wasn’t aware that there was a single ‘bad kind’ of diabetes. Diabetes sucks – I have to do loads of stuff that any other person my age wouldn’t have to even think about. But no one kind is, ‘the bad kind’.
13. ‘Ahh, so you’re still diabetic?’
Let me put this gently; Type 1 diabetes does not go away. I will not grow out of it and I can’t cure it through diet or exercise. Essentially, my pancreas is bust. I will be diabetic until there is a cure and on that day, I’m sure it will be on the news everywhere in every country. But for the moment, there is no cure. So every time you see me, yes, I will still be type 1 diabetic.
14. ‘I read about a cure in my magazine. I’ll bring it to show you.’
I hate to break this to you, but… the media lies. Again, there is no cure. Do you honestly think I would put myself through this if there were? A note to remember – when you see an article in a magazine on ‘diabetes’ do three things for me. One, scan the article to see if you can see ‘type one’ or ‘type two’. Two, consider what type of diabetes it’s talking about. Three, shred and then burn the magazine.
15. ‘I read that if you eat healthy then it goes away. There was an advert in my magazine. I’ll bring it to show you.’
The same idea as number 14, there is no cure. Diet and exercise will not work. I’m stuck with type 1 diabetes.
16. ‘That must hurt. I don’t know how you can do that to yourself.’
Erm… because I want to stay alive!!!! Seriously?!? What a comment! Of course it hurts sometimes! When you accidently hit a blood vessel/the canula goes in wonky/ you accidently rip the cannula out, it does hurt. But, do me a favour, don’t draw attention to it whilst I’m doing a set/injecting. ‘Does it hurt?’ is a valid question which I’m happy to answer. ‘That must hurt’ is a statement, which draws even more attention between my hand and the needle. ‘I don’t know how you do that to yourself’ is a tad silly – seen as if you were diagnosed, you’d choose to do it too. I’d rather live and do injections. My method of doing any injection/set is distancing myself from the situation (i.e. singing to myself in French or Spanish – for some reason it’s always my Y9 French teacher’s track from the Superbus album that gets stuck in my mind. It’s my cheesy ‘safe’ song where I’m no longer focusing on the needle and I’m in a happy place.) So s’il vous plaît, my technique is distancing myself, don’t draw me back in to comment on how much it must hurt. That will make me tense and it will hurt.
17. ‘I guess it’s good that you got it when you were only 2. You don’t know any different.’
Yeah, sure, it’s great that I’ve never been able to go out without considering my BG/going without needles. In fact I’ve grown to love it. Of course, that was sarcastic. It sucks having lived with this for all that I can remember of my life. I’ve never had a day off. You reckon that’s a good thing? Wanna trade places and only then may you comment.
18. You said you have to have diet – WHAT THE HELL ARE YOU DOING DRINKING LUCOZADE?!?
I am currently hypo. (Hypothetically, I mean.) I drink lucozade because the sugar gets into my bloodstream quickly and gets my BG back up. I don’t drink sugar drinks normally – I drink diet because when I’m at a normal reading, I don’t need anything to bring my blood sugar up (plus Diet coke is the best.) But, when I’m low, I need that fast acting sugar to bring me back to normal.
19. ‘(After having gone hypo and just finished drinking my lucozade) Better now?’
No. I am hypo. I am still hypo after swallowing the lucozade. I will not be back in a safe range for at least another 20 minutes. So, don’t ask me if I’m better and want to keep walking. Don’t ask me a question in class. Don’t expect a friendly response seen as I’m hypo and considering what you just asked me I am no longer happy. Even if you are a close friend and I love you very much – you will not see nice Beth in this situation, you’ll see hypo Beth. Hypo Beth may snap at you and be grumpy for at least 20 mins, more likely an hour. I take at least 20 mins to come round from a hypo, it’s not instantaneous. So, if I snap after this question, I apologise. I know you have good intentions – but please, for the love of God, don’t expect a friendly response. You’ll be speaking to hypo Beth and not friendly Beth.
20. ‘But you’re so young!’
I have type 1 diabetes. Also known as diabetes mellitus and juvenile diabetes. Type 1 diabetes is most commonly diagnosed from infancy to the late thirties. I was diagnosed at just over 2 years old – it’s generally the kids who are diagnosed with T1, not the adults.
Based on the poem ‘A Mother’s Anthem’ by Linda Kaniasty, this film was made by Suscito Films for Children with Diabetes UK to raise awareness as part of Diabetes Awareness Week 2012.
This short film is dedicated to all the Mothers and Fathers who don’t sleep at night, to all the children who live with this condition so bravely and to all the families that this condition touches.
Hope is in a cure.
One of the greatest challenges that parents of children with diabetes face is caring for their children when they have a stomach illness. When kids have a stomach flu and aren’t able to keep food down, blood sugars can drop quickly. With blood sugars dropping and kids unable to eat, parents often resort to a trip to the emergency room for an IV of glucose or a large dose of glucagon. A new study offers an easier alternative.
A team from the Texas Children’s Hospital Diabetes Care Center came up with a novel idea: use very small doses of glucagon, injected subcutaneously using a regular insulin syringe, instead of the usual large dose of glucagon given IM as a way of staving off hypoglycemia in kids with a stomach illness (gastroenteritis) or who were not cooperating and needed food. Whereas a typical glucagon injection delivers 500 to 1,000 µg, the Texas Children’s team suggested the following dosing schedule:
- 20 µg for kids ages 2 or under, and
- 10 µg per year of age for kids from 2 to 15 (20 µg at age 2, 30 µg at age 3, etc.)
- 150 µg for kids 15 or older
Parents were instructed to dilute the glucagon as instructed in the glucagon emergency kit, but then to use a standard U-100 insulin syringe (30, 50, or 100 units) to draw up the glucagon. Each “unit” on the U-100 insulin syringe corresponds to 10 µg of glucagon. Thus kids two or under received two “units” of glucagon, while a 10-year-old would receive 10 “units,” based on the dosing schedule above. Parents monitored blood glucose every 30 minutes. If the child hadn’t improved in 30 minutes, the dose was doubled and given again.
The results were excellent. Given in the doses outlined, blood sugars rose an average of 3.33-5.00 mmol/l (60-90 mg/dl) within 30 minutes and lasted for about an hour. Also, in the doses given as described, the glucagon did not cause an increase in nausea as is typical with large dose glucagon, and none of the kids vomited from the glucagon.
The team stressed that their approach is suitable for relative hypoglycemia in the face of stomach illness or lack of cooperation in eating, not unconsciousness due to severe hypoglycemia.
For further information
Excellent new site to compare and rate your diabetes clinic or find a clinic that supports insulin pumps or CGMS.
Created by patients for patients
Excellent new website to comment and rate your clinic. Visit The Children’s Diabetes Clinic Comparison site for information about clinics throughout the UK and also to rate your clinic.
John Davis, 72, of Lymington, has been awarded an MBE after heading a support group for patients with diabetes.
Mr Davis founded INPUT, which is campaigning for more diabetics to be prescribed insulin pump therapy.
INPUT estimates that only three per cent of the 300,000 people with Type 1 diabetes in the UK have pumps.
John Davis, who has used one of the devices since 1997, has recently retired from the group, having seen it grow over the past 13 years.
John Davis was first diagnosed with diabetes in 1987 following severe pancreatitis. A pump user himself since 1997, he founded INPUT in 1998.
INPUT serves as a centre for information on insulin pump therapy and an advocacy group for consistent funding for insulin pump therapy across the UK.
NHS Primary Care Trusts must comply with NICE Technology Appraisals, but inadequate governmental supervision of their implementation and little support from the Department of Health to establish best practices have made the NICE guidance on insulin pump therapy very difficult to enforce. INPUT works with Diabetes UK, JDRF, the Department of Health, members of all UK Parliaments, the diabetes care industry, consultant diabetologists, diabetes specialist nurses, general practitioners, to bring about full adoption of the NICE guidance on insulin pump therapy. In 2006 John was winner of the Diabetes UK “HG Wells Award”.
The Faces that Live with Juvenile Diabetes calendar 2012 – a beautiful showcase of just some of the brave, happy and smiley children that live with Type1 diabetes , every day, forever ; no break , no holidays. Hope is in a cure – all proceeds to JDRF
The calendar is now in it’s third year and is bigger and better than ever, with many more families involved. It has been organised by Jo Dury, Helen Campling and Steve Newton, all members of the UK Children with Diabetes (CWD) group and all have children with Type 1 diabetes.
It is retailing for just £6.95 with ALL proceeds being donating to JDRF (Juvenile Diabetes Research Foundation). It makes the ideal christmas present for family and friends, helping to raise the profile of type 1 diabetes by showcasing the beautiful “faces” of our type 1 children and raising money into research as well