type 1 diabetes/ invisible illness documentary

[Shar67]

I would like to see it on insulin dependency (type3c is treated the same way as type 1 although there is other health issues) how every day you need to be thinking ahead to avoid hypos or hypers. Going on holiday, time zones, weather, heat, cold, exercise, sex, dancing, alcohol, eating out. Making it look easy whilst you are constantly having to be aware how your body is reacting.
Fails, wins, depression, being discreet or openly injecting (bit like the breast feeding arguement) (yes of course I'm a junkie that's why I tested blood from my finger, then swabbed my belly and have a preloaded heroin pen)
I think you might have to do a 4 parter

 

[hollyslot]

Itoohave a chequered history of both anorexi and type 1 diabetes. I'd love to see information on how healthcare professionals and carers work or not, to help manage multiple hidden and complex conditions and the domino effect it has on the patient.

I also think themes of illness behaviour and identity are important. I've been told I'm practically a write off, and also that I'm not sick enough because the Dr couldn't see anything wrong with me at first glance! An intensive care stay two days later for DKA sort of prices them wrong lol!

i think that sounds like a really good idea! i think the mental aspects of having a chronic physical illness aren't really looked into enough x

 

[hollyslot]

I would like to see it on insulin dependency (type3c is treated the same way as type 1 although there is other health issues) how every day you need to be thinking ahead to avoid hypos or hypers. Going on holiday, time zones, weather, heat, cold, exercise, sex, dancing, alcohol, eating out. Making it look easy whilst you are constantly having to be aware how your body is reacting.
Fails, wins, depression, being discreet or openly injecting (bit like the breast feeding arguement) (yes of course I'm a junkie that's why I tested blood from my finger, then swabbed my belly and have a preloaded heroin pen)
I think you might have to do a 4 parter

i have to say, this is the first time i've ever heard of type 3C! is this different from type 1.5?
yes i think it would be great to go into how you have to be always very aware of your diabetes, it's not something you an ever really forget about. and yes there is so much to talk about! i only have 15 minutes though x

 

[Shar67]

If you look at this site type 3c you usually get it being due to Alzheimer's, but there is type 3 a,b,c,d,e and f
3c is due to illness, operation or accident.
I have a shrivelled up pancreas, I have no pancreas function at all, the other function of the panc is to produce enzymes to break down fats and proteins and absorb vitamins and minerals, so complications are usual. I take replacement panc enzymes tabs that are made of pig pancreas, there is a small risk in these as any meds pig was given some remain in the tabs.
These tabs are allowed to be taken by Muslims and Jews as it is the only way they are made.

Because of the problem digesting fat type 3c are told to eat a low fat high carb diet, but as diabetics it is better to follow a lchf we usually land somewhere in the middle.

15 minutes isn't long but you could do a fast speed of a "normal" person Friday get up, into work, out at the gym, home changed, friends round, going to pub, going to club, bedtime with passion, them grabbing snacks, drink energy drinks, eating, the kebab after club.
Then do a diabetic doing same but have the testing and injections in between all the usual routine and them having to lug all the stuff with them

 

[Aginoth]

Would love to see some kind of film on type one. I got diagnosed last year at the age of 40 after a hip operation. Nearly died intensive care etc but getting there now. Only problem I'm registered disabled with back/hip problems and now moving to other joints can't or they won't do steroid injections anymore because of my diabetes so now struggling with more pain and type1

I have Psoriatic Arthritis as well as T1D. I've never been refused a steroid injection because of the D; they don't do a thing for me mind, but have never been told I shouldn't have them

 

[Aginoth]

i have to say, this is the first time i've ever heard of type 3C! is this different from type 1.5?
yes i think it would be great to go into how you have to be always very aware of your diabetes, it's not something you an ever really forget about. and yes there is so much to talk about! i only have 15 minutes though x

One of my brothers has Type 3c caused by Cystic Fibrosis damaging his pancreas.


see this thread http://www.diabetes.co.uk/forum/threads/type-3-diabetes.15283/

 

[hollyslot]

As I have been told for many years, diabetes will never kill me but any one(or more) of the things that it can bring on will. I think people are quite ignorant on the affects that diabetes can have on the body and the amount of other things we have to be aware of. It is a very complex condition.

Personally I think that all the other conditions that can be brought on by diabetes needs to strongly highlighted. The need for good control should also be paramount. There are so many conditions that we cannot see happening to our bodies and can be unaware of them until it is too late. I have suffered from depression on a number of occasions. Apart from that I am relatively healthy but I do put that down to good control and looking after myself.

I have been a diabetic for 42 years (since the age of 16) and have an insulin pump.

Good luck with the documentary.

Ann

I agree, related conditions aren't brought to the public eye (eg depression, eating disorders in my case and other issues) and I think they should be, as diabetes isn't just inject test and get on with your life, there's a lot more to it than that!

 

[hollyslot]

M

OMG yes.. this is a huge frustration i have had. Pretty much everyone i know thinks now that I have diabetes i just take a single insulin shot before a meal and then i can eat whatever i want without consequence, and everything is fine.

One of my friends actually got in an argument with me because he said that his Tinnitus was worse my diabetes because his disease "actually affects his day to day life" and "diabetes wont affect me "unless i don't take my insulin" I had to walk away because i was about to punch him in the face.

People think we can't feel the change in blood sugars and we TOTALLY CAN. I am constantly feeling my BG change all day, every day. it certainly affects my day to day life. Especially highs and lows. There is maybe 4 hours total in my days where i don't feel my BG because they are stable and at a good number, the rest of the day they are either falling or raising, although still in a good range i can totally feel the fall/raise.

Me too. I feel it affects me all the time! That's so annoying of your friend I would have been so angry! Yep I definitely think this is an important part to cover. Insulin helps us not die, but it doesn't take away our diabetes and everything that comes with it.

 

[viv k]

I've been following really positive stories about the procycling team sponsored by novo nordisk. My family are cycling fans and during my recent problems with diagnosis they kept showing me clips about these professional athletes with type 1 and it helped me feel more positive about living with diabetes.
I'm with Diamattic on the bit about people thinking insulin lets you eat whatever you like, I'm sick of being told that now I'm on insulin, I'll be able to 'eat normally'. It's not just that they don't get the idea that it's still not good to eat big, high carb meals, it's also the timing issue. "No, I won't have crisps before my meal, I need to test my BGs before I eat, random snacking mucks with that." Non diabetics can eat when they like, for us it's not just what we eat, but also when.

 

[Matt J]

I've been following really positive stories about the procycling team sponsored by novo nordisk. My family are cycling fans and during my recent problems with diagnosis they kept showing me clips about these professional athletes with type 1 and it helped me feel more positive about living with diabetes.
I'm with Diamattic on the bit about people thinking insulin lets you eat whatever you like, I'm sick of being told that now I'm on insulin, I'll be able to 'eat normally'. It's not just that they don't get the idea that it's still not good to eat big, high carb meals, it's also the timing issue. "No, I won't have crisps before my meal, I need to test my BGs before I eat, random snacking mucks with that." Non diabetics can eat when they like, for us it's not just what we eat, but also when.

Yes, Team Novo Nordisk (formerly Team Type 1) is a UCI professional continental team - all team members and a lot of the staff have type 1. If you're based in the UK they're competing in the Tour of Britain starting this Sunday (6th) which runs for a week. I'm in some of the same strava groups as some of the team members and the distances and elevation they cover is amazing. Yes, I know they're professional cyclists and have access to the best healthcare and CGM's etc but to be able to do it with Type 1 is inspirational stuff.

 

[viv k]

Other side of the world, but my family will be watching it on TV and I know who I'll be cheering for!

 

[Emilyprice]

To make sure the difficulty of maintaining good sugar levels is highlighted. I hate the word 'control' when there are so many flippin variables..sometimes it feels Impossible even after 22years! Important not to talk about complications in a way that makes it sounds like you have been a 'bad' diabetic if you get any- way to kick someone when they're down I had diabulimia and definitely have high anxiety, possibly because I've had so much more to think about from a young age, other than depression, but I think this is down to the complications I have now after pregnancy. Good luck!

 

[Shar67]

One of the complications of having a damage panc is you vomit a lot, it is like being a forced bulimic or anoxorexic, but the only treatment is to either constantly eat in hope some stays, which makes panc struggle. The pancreas is such an under rated organ, ask most people about it they will probably mention diabetes, but have now idea how much more important it is, if you tell them if it decides to go awry it can damage stomach, liver, intestines, lungs, spleen and heart, it is like ok never heard of that and maybe not believe you add in diabetes and diabetic complications then to me it is the most important part of your body.

 

[coco44]

If only it were that simple Diamattic our day to day lives would be so easy.

OMG yes.. this is a huge frustration i have had. Pretty much everyone i know thinks now that I have diabetes i just take a single insulin shot before a meal and then i can eat whatever i want without consequence, and everything is fine.

One of my friends actually got in an argument with me because he said that his Tinnitus was worse my diabetes because his disease "actually affects his day to day life" and "diabetes wont affect me "unless i don't take my insulin" I had to walk away because i was about to punch him in the face.

People think we can't feel the change in blood sugars and we TOTALLY CAN. I am constantly feeling my BG change all day, every day. it certainly affects my day to day life. Especially highs and lows. There is maybe 4 hours total in my days where i don't feel my BG because they are stable and at a good number, the rest of the day they are either falling or raising, although still in a good range i can totally feel the fall/raise.

 

[coco44]

I've been following really positive stories about the procycling team sponsored by novo nordisk. My family are cycling fans and during my recent problems with diagnosis they kept showing me clips about these professional athletes with type 1 and it helped me feel more positive about living with diabetes.
I'm with Diamattic on the bit about people thinking insulin lets you eat whatever you like, I'm sick of being told that now I'm on insulin, I'll be able to 'eat normally'. It's not just that they don't get the idea that it's still not good to eat big, high carb meals, it's also the timing issue. "No, I won't have crisps before my meal, I need to test my BGs before I eat, random snacking mucks with that." Non diabetics can eat when they like, for us it's not just what we eat, but also when.

I think that's it in a nutshell especially how random snacking just isn't worth the hassle of mucking up a tight control routine and the when dilemma!

 

[ljmc]

Shar67 I tell people i am shooting up vodka or gin. Can't inject a mixer like coke cause the fuzzy bubbles cause you to fart. So far only 2 idiots believed me. Keep injecting in public though. People stare so much i take my time hoping one day while they are eating they fork themselves in the eye

 

[Anaelena]

As the outsider here and maybe this is not possible as a budget might constrain you but I think type 1 Diabetes as viewed by different parts of the world would be interesting. I often read on here about how unhappy many of the people are with the health care system when i myself have no health insurance and must travel to Turkey for my medical supplies as it is much cheaper there than it is in the states. Recently I saw a documentary on an african man who was given approximately 45 units of insulin to last him a entire month and test strips were unheard of . Perspective is everything .

 

[Heathero]

Just been to Marracech, they thought I was really strange when I managed to explain I can't have sugar as cakes/ pastries/ orange juice and bread for breakfast. Had sort of scrambled egg with onion and tomato( yuck ) every day instead .

 

[Charles Robin]

I think a documentary on Type 1 diabetes could be a great thing. However, there are a huge variety of angles you could approach this from. First up, pick your target audience. Are you looking to educate an uninformed public, or are you planning to highlight the best control methods for people already coping with type 1 diabetes? Depending on the length of the documentary, it may be difficult to accommodate both. Of course, that statement could be completely discarded depending on how in depth you plan to be. If you're going massively over complex medical ideas, that's going to take up time. If you're looking more at how lifestyle can be adjusted to suit a type 1, your documentary could be of interest to both general public and type 1s/ their family members.
One approach you could take is to look at different people and their approach to managing their diabetes. For instance, I and many others eat a low carbohydrate diet. However, others insist that this is not healthy or constructive. You could present different ways to eat (e.g. Go on as normal, eat according to DAFNE, or low carb). I would recommend doing it in a non judgemental way, merely showing positives and negatives of each.
Alternatively, you could look at how a certain age group deals with living as a type 1. A natural area of interest is the teenage years. Plenty of forum members have admitted to rebelling against their diabetes as adolescents. I was certainly one of these. You could look at the standard of care offered to teenagers with diabetes, and how they do or do not cope with their conditions. Again, a rounded view is important. I had awful control as a teenager. A friend maintained a fantastic HBA1C all through school.

 

[hollyslot]

One of the complications of having a damage panc is you vomit a lot, it is like being a forced bulimic or anoxorexic, but the only treatment is to either constantly eat in hope some stays, which makes panc struggle. The pancreas is such an under rated organ, ask most people about it they will probably mention diabetes, but have now idea how much more important it is, if you tell them if it decides to go awry it can damage stomach, liver, intestines, lungs, spleen and heart, it is like ok never heard of that and maybe not believe you add in diabetes and diabetic complications then to me it is the most important part of your body.

it is an incredibly important part of your body, as your BG level affects how you feel greatly. i think it varies in to how much people are sick though, i know before i was diagnosed i was sick every single day, but i haven't been since i was 11! (i am now 19) x