isnt ist sad that every diabetic cant be offered a pump and CGM. It would make life so much safer and easier for most people. I know my son has no chance of being offered one. When will someone in power weigh up the cost of providing pumps etc, with the cost of dealing with future complications of badly controlled diabetes! Surely they must equal out.
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CGM Insanity
- Thread starter Purple
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Hi Carol,
I cant remember - how old is your son and why do you think he wouldnt be offered a pump?🙂Bev
Hi Bev , my son is 21, been on MDI for the last 6 years, and they say he is reasonably controlled, so wouldnt consider funding a pump. They dont have the worry of night hypos etc though. His last appt , after a severe hypo while he was asleep, the consultant just advised him to decrease his lantus. He only put it down by something like 1 unit, and now hes waking well into double figures(it was 22.6 yesterday. Its a bit of a might mare, nut then you do get a bit scared to have to tight a control on MDI
This doesnt sound like 'reasonably controlled' to me to be honest. Having a pump is NOT just about control and hba1c's - its about lifestyle and the fear of hypo's etc and if your son is having trouble waking on a decent level then this is a good enough reason to ask for a pump. Does your son want a pump? If he does, then get in contact with John Davis at INPUT - he helps people to pursuade their teams to fund pumps.🙂Bev
The biggest thing is the fear of hypos, thanks for that advice bev, I will contact him. I dont think actually the 4 injections bother him that much, but I dont think he has a reasonable control, and it worries me for his future,.
Thanks again, sorry for hijacking this thread.
Thanks again, sorry for hijacking this thread.
Copepod
Much missed Moderator
- Relationship to Diabetes
- Type 1
On MDI, I almost instinctively eat the contents (tiny ziplock bags of jelly sweets) of my pockets when running round a forest, which I do quite often, particularly when orienteering. Plus I seem to know instinctively when to reduce morning basal (more chance to adjust by taking morning and evening) and breakfast / midday bolus doses.
Just a different way of doing things, but I know that it's very different being an adult, who didn't have diabetes as a child, and for whom MDI works well, so I've always been solely responsible for my doses.
Completely agree about importance of avoiding hypos, and treating quickly and efficiently if they do happen, but also agree that trying to analyse why a hypo has happened is important to help prevent future ones.
Just a different way of doing things, but I know that it's very different being an adult, who didn't have diabetes as a child, and for whom MDI works well, so I've always been solely responsible for my doses.
Completely agree about importance of avoiding hypos, and treating quickly and efficiently if they do happen, but also agree that trying to analyse why a hypo has happened is important to help prevent future ones.
novorapidboi26
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- Type 1
Hey guys...................although this is a thread witihn the pumping section my comments were not specifically directed at the pumping community........I think pumps are great and that avoiding hypos on them is much easier........but I do stand by my opinion that striving for almost perfect control and acheiving it will result in frequent hypos and an HbA1c much lower than that of a non diabetic.......lol🙂.....if this is happening then diabetes in my opnion has consumed you.....
When I was discussing hypos, there are times when you can have one unexpected, whether on a pump and planning every minute of the day, agree?
Adrienne, when I said 'healthy' regarding hypos, this was me flowering it up a bit and only reffering to diabetics, and mostly MDI. As we have to walk the line between low and high and may slip off from time to time, and to add, my definition of a healthy hypo on very rare occasion is around 3.5-4mmol.l, anything lower as discussed before has been the result of miscalculation or extra activity................
Anyway...............this is the perfect way to start my monday morning............morning all....
When I was discussing hypos, there are times when you can have one unexpected, whether on a pump and planning every minute of the day, agree?
Adrienne, when I said 'healthy' regarding hypos, this was me flowering it up a bit and only reffering to diabetics, and mostly MDI. As we have to walk the line between low and high and may slip off from time to time, and to add, my definition of a healthy hypo on very rare occasion is around 3.5-4mmol.l, anything lower as discussed before has been the result of miscalculation or extra activity................
Anyway...............this is the perfect way to start my monday morning............morning all....
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Of course diabetes has consumed us - it has taken over our lives and wasnt even invited! If trying to prevent our children from losing their eyesight, or losing a limb, or having heart problems, or, or, or, or etc etc etc etc - which requires us to spend our lives trying to keep levels within the magic 4 - 7 - then yes WE ARE CONSUMED BY DIABETES.😱
If we cant get a full nights sleep due to worrying about all the other awful things that can happen DIB, DKA and all the rest - then YES your absolutely right - we are all consumed by diabetes and you know what? We dont have a choice. So please stop with your inflammatory suggestions and 'tips' - quite frankly I dont need to hear your advice on how to look after my diabetic child or how to run a pump - because you have no experience of either and it really is upsetting that you feel that you *know* anything about either and behave in such a blase way.
I have commented before about how lovely your little boy is on the avatar - try looking into his eyes every night and wondering whether you will still have him in the morning - trust me - it is THE worst feeling in the world - and I wouldnt wish it on my worst enemy. And I can guarantee that you would become *obsessed* and want perfect levels at all times - and you wouldnt give a damn what other ill-informed people thought.
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
Bev, I cant remember ever telling you how to look after your diabetic child, and I understand the difficulties you face...........I really cant see how you can justify a response like that to me just giving an account of my experiences, a diabetic childs experiences, as well as the brother of a diabetic baby........so ill informed, I think not........
I do think about my boy and how he may develop diabetes and its scares me.........but thats really nothing to do with all this..........I was only commenting on hypos and what i believe about tight control........
You are obviously very emotional attached to your childs condition, and thats fine, but you are acting the same way you are accusing me of acting, forcing opinions and theories which couldnt be further from the truth...........
tracey w
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- Relationship to Diabetes
- Type 1
Bev,
I agree with you totally. I too am "consumed" with managing diabetes although of course i wish i didnt have it at all. I think about it 24/7, yet others around me would not know that and often comment how well I am, or how well I cope. They have no idea what it entails daily to manage and the night testing, night hypos to deal with and still work and live full time! Thinking about everything you put in your mouth and what it will do, what will i need to do, will i be active this afternoon or not?
You can take two routes, try for near perfect numbers 24/7 in the hope of well being now and for years to come. Or not be consumed, not try to manage this and ........well we all know the consequences. I truly dont think it is managable unless you deal with it 24/7, you cant take time out.
Everyone has their own views and opinions, but I feel sure Alex will thank you when he is older because you are consumed by this dreadful disease.
I agree with you totally. I too am "consumed" with managing diabetes although of course i wish i didnt have it at all. I think about it 24/7, yet others around me would not know that and often comment how well I am, or how well I cope. They have no idea what it entails daily to manage and the night testing, night hypos to deal with and still work and live full time! Thinking about everything you put in your mouth and what it will do, what will i need to do, will i be active this afternoon or not?
You can take two routes, try for near perfect numbers 24/7 in the hope of well being now and for years to come. Or not be consumed, not try to manage this and ........well we all know the consequences. I truly dont think it is managable unless you deal with it 24/7, you cant take time out.
Everyone has their own views and opinions, but I feel sure Alex will thank you when he is older because you are consumed by this dreadful disease.
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
As mentioned before mangaging a childs condition is much more involved, I was not telling anyone what is right and should be done..............
You are NOT the parent of a diabetic child - so you have no idea how it feels. Being the brother of a diabetic is also very different from being the parent - so you are not in a position to judge whether me or any other parent is *consumed* by diabetes and I was offended that you said that people who strive for perfection are being *consumed* by diabetes.
I have not behaved in the same way you have at all. You are clearly very thick skinned as you seem to get peoples backs up quite a lot and dont even understand what it is you have done - and I dont want to waste my time trying to explain it to you because its like groundhog day.
'you are obviously very emotionally attached to your childs condition'.....did you really say that?😱
Tracey, I cannot imagine how it must be for you - but thankyou for explaining things - because this is something that worries me a lot about how Alex will cope when he is in charge of his own care and how he will deal with it.
Other people have no idea do they. Keep going Tracey - you know your doing the right thing by being *consumed* by diabetes and you are doing everything in your power to stay healthy.🙂Bev
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
I did say that and I can see it was wrong as its unconditional obviously, I am just quite worked up here.....
Are you saynig I cant believe that being consumed with it is wrong, it was an opinion from me, not an enforced rule.......
You think I am wrong all the time, why, is it because your right, no, your not, your doing whats right for your child, yes............I try my best to give my opinons in a light hearted way, utilising all the emoticons things bla bla......yet you still feel you can shout and scream.............
Dig deep and tell me whats really bothering you...................
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tracey w
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Not necessarily more involved? You can be as involved as you decide to be, that was my only point i was making. Not how things should be done.
Emoticons dont hide inflammatory remarks.
novorapidboi26
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- Type 1
Adrienne
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- Parent
I do think you are far far far too critical of us parents. You always have been unfortunately and some of us get upset and indeed angry at your implications. There is always something.
Personally I find a lot of your advice is wrong and sometimes I do take issue with it but I never critcize you and how you do things.
We are totally consumed with diabetes. Bev, and all the other parents have had a healthy child for a number of years, some longer than others and BANG that life has gone, totally, never to return so not only are they having to relearn how to be a parents to a child with this horrendous life threatening condition, they have to deal with it emotionally without it affecting the child too much. No-one can ever comment or criticize about that without experiencing it themselves, the feeling is like no other. We do not know how any of you feel who have diabetes yourselves and we often say that. I cannot comprehend that feeling and hope I never have to.
Diabetes is our life, I now personally help families all over the country, and infact a few on this forum but off the forum. I do it because I am all consumed by diabetes and I can see how horrid it is and how dangerous and I do know what I am talking about. If I don't, I say so.
Please keep this thread to pumps and all things pumping. If you have questions about pumps, we will answer them. Some people want them and some don't. Copepod argues a great case for staying on MDI but doesn't argue that striving for perfect control is daft, which is pretty much what you are doing. If we want to strive for perfect control for our children or Tracey for herself then that is our choice and do not need to be told :
"I believe there is a such a thing as too perfect, I dont think any diabetic should devote there entire life to getting perfect results all the time....then the risk of hypo is much greater, and quality of life much lower......"
This whole sentence is incorrect. You can achieve this perfect control on a pump or try to. The risk of a hypo is NOT much greater at all. The quality of life is infact so much BETTER. You have it all the wrong way around. Only a pumper or a parent of a pumper would know this so again please don't say about things you really have no clue.
Hopefully this will now blow over and not become something unnecessary.
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
I THINK PUMPS ARE GREAT..........INFACT I AM GOINg TO GET ONE SOON.....
I will comment on everything that is related to diabetes, as I am diabetic and deserve a say as everyone else does.................I will not however crtiticise anyone in their efforts, never have, never will..........
I will comment on everything that is related to diabetes, as I am diabetic and deserve a say as everyone else does.................I will not however crtiticise anyone in their efforts, never have, never will..........
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