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Feeling lost!

Jubblyjo1601

Jubblyjo1601

Well-Known Member
Messages
80
Location
Hertfordshire
Type of diabetes
Type 1
Treatment type
Insulin
I have been a type 1 diabetic for 19 years since the age of seven. Since I can remember my sugar levels have been all over the place and I find it really hard to control! Am I the only one who is really rubbish at being diabetic? I don't eat terribly and I try and match my insulin to the carbs I eat but it still seems my sugars like to have a crazy party in there! :((( anyone got any general tips?! In a couple of years I will want to start trying for a baby but there's no way I can have a healthy baby with a body full of sugar! I use Novo rapid and Levemir. Just feeling lost and want to talk to people who know how I feel! Not a health professional who wants to fill my head it's lots of long words and scary thoughts! Morning levels are particularly troublesome! One morning this week I woke with a nice 7.3 and then the last couple of mornings I am getting 17 / 19s! :(


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Jubblyjo1601 said:
I have been a type 1 diabetic for 19 years since the age of seven. Since I can remember my sugar levels have been all over the place and I find it really hard to control! Am I the only one who is really rubbish at being diabetic? I don't eat terribly and I try and match my insulin to the carbs I eat but it still seems my sugars like to have a crazy party in there! :((( anyone got any general tips?! In a couple of years I will want to start trying for a baby but there's no way I can have a healthy baby with a body full of sugar! I use Novo rapid and Levemir. Just feeling lost and want to talk to people who know how I feel! Not a health professional who wants to fill my head it's lots of long words and scary thoughts! Morning levels are particularly troublesome! One morning this week I woke with a nice 7.3 and then the last couple of mornings I am getting 17 / 19s! :(


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Hi

First things first try not to worry and stress about it .. As it tends to have an adverse effect on blood glucose levels .. Trust me you are not alone in feeling the way you are I have been type 1 since I was 19 felt like my whole world was turned upside down but day by day I have stuck at it and just plodded along. Ultimately it's your health and you need to stay strong mentally .. My sugars use to be really high but now thank God with dietary changes and exercise I am managing them a lot better.

I tend to eat something about an hour or 2 before bed preferably slow realising carb meal. What time do you take your levemir and how many units?


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I already feel much better knowing I have people on here to talk to so thank you :-)

I am on the waiting list for the DAFNE course and have been for ages! Is this the same for anyone else?

I take 16 units of Levemir before bed and 16 in the morning. I can go to bed with normal levels and wake with highs! I haven't had a Hba1c result below 8 for many many years! Got to get on top of this now :)


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I should of added that I take my Levemir about 10 - 11 pm and about 11 - 12 the next morning. Sometimes I am not great at sticking to set times - do you think that would make much difference?


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A problem shared is a problem halved :-) .. I am currently taking 10 units of lantus around 5pm everyday to give me my background insulin and currently 1unit 10 carb ratio.

You just got to keep a close diary of what your taking and eating also try not to estimate the carbs be as exact as you can .. I use to guess but when I actually counted it properly boy was I far off :-( I am also looking to go on that course not sure how long the waiting list is .. I seen my health professional last week which was beneficial I made a list of questions and found it to be very beneficial.



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Hi

I think you should try and stick to a set time when you take it just to be consistent ... Ultimately just try and make little changes here and there to your diet as certain foods trigger a spike in blood glucose compared to others. Hope that helps.


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Hi depending on how I'm feeling :-P usually I tend to eat a bowl of weetabix (i know not ideal) but i tend to wake up with a reading between 5-7 .. Last week I ate out and woke up with a reading of 12 so it really comes down to management getting the carb ratio correct. Hope that helps.


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Hi it's always important to take insulin but vary it depending on what you eat .. I recently purchased a book carbs & cals it's quiet helpful :-) provides pics of common foods :-)


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Hello and welcome! I had the same problem with erratic bs and docs and dn were no help. For some reason the big tip was always to increase insulin and to try and avoid hypos. Since reducing carbs and getting serious aboit carb counting things have changed dramatically. When I last saw my doc and told him my novorapid was 3, 3 and 4 and Lantus was 12 he looked horrified and said it was too little despite a HbA1c of 6.5 and very few hypos! If I push back the time of my Lantus I notice it in the morning. The difference in bs is quite dramatic. Everyone responds differently but that is my experience. You have come to the right place for help and support. A lot of people here are nothing short of inspirational in their achievements and the advice is staggering in its detail and knowledge. It should be mandatory for all HCPs to check out this forum as by comparison they are just feeling their way blind! Good luck on your journey. If I can get there anyone can! :smile:

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Hi...you are certainly not alone! The DAFNE course will revolutionise your diabetes awareness & control, it's great you are on the waiting list!

I did DAFNE whilst living in oz in 2005 - I couldn't believe I had got through the previous 5 years as a t1 by mostly just guessing!!!! I found it a great way to be more in touch with my diabetes and felt more in control & had more choice after learning about carbs and insulin adjustment.

Since then I think I have more awareness but still have lapses, but I just can't be 'on it' 100% of the time. Life happens! But now little things are starting to show up (background retinopathy, 'slight' peripheral neuropathy) I am determined to be as on top of it as I possibly can be to stop anything from getting worse.

This forum is great for keeping in touch with 'it', don't know about you, but in real life, it's not something I ever really talk much about!






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Thanks guys :-) I am going to chase up to DAFNE course as it sounds like a really useful thing to do! Confused now though. I woke with 10.6 today, okay not great but better than most mornings, had 26g carbs so with my ratio of 1:10 I had 3 units NRapid and now lunchtime is here I have 16.2! Took Levemir at 10 to be sure I didn't leave a big gap! Is my body just mental?! Ha ha :-D


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Don't be disheartened, test test test to see if you can spot patterns. I am impatient and when I see high numbers I want to shovel insulin in. But it's far better to keep a comprehensive record over a few days, of numbers pre & post meals and what carbs you had and how much insulin...then you can see what needs changing. Change one thing at a time (I.e. background or insulin:carb ratios).

If I was consistently high in morning i'd try an extra unit or 2 at night, you could always run it past dsn???


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Hi You are definitely not alone. Type 1 is a nightmare at times, it can be SO hard and I have despaired at readings sometimes, been very happy and been in tears many a time. So lets all keep on trucking and hopefully the road will get easier.

Good luck and don't forget, we're all in this together ((((((((((( a group hug)))))))))))))) :D

Best wishes RRB
 
Hello. We are very similar 20 years have had it and I'm 30 now and have struggled since first diagnosed. A lack of education when first diagnosed didn't help for example not knowing what an hba1c of 10% actually meant! Anyway we are where we are.
I've done dafne and what am eye opener! Great course but like above I stick to it then life happens and I lose it again but I at least have the basic knowledge to put into practice when I'm not being so good

I take almost the same doses as you and unfortunately i suffer from the dawn phenomenon where between 3am and 7 my blood rises. Check you bg at 3 for a few nights to see where you are. It also make me peak all morning and I have to do extra units to keep it down

I changed my foods once I learned how much sugar was in weetabix and I used to spike each time, same with bananas. I'm good at only 30g of my fruit and fibre everyday now.

Download the dafne app if You have a smart phone or iPhone you can look up foods and record bgs. I also bought think like a pancreas which was so interesting and helped me realise what happens when I have pizza and pasta

Sorry this is so long! I have so much to share!!


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Wow thanks so much for sharing your experiences with me! Please share as much as you like! And thank you Robinredbreast for the group hug :-) Having never really spoken to any other type 1's about things this has made me feel like a weight has been lifted! I feel like I can come feel a bit sorry for myself here and people understand why rather than presume I'm making a fuss over nothing! So happy to have found such lovely people! I have already found a copy of "think like a pancreas" and I am about to purchase!

I have been considering a pump as I have seen many haters raving about how much it has improved their control. Any views on this? The only thing putting me off is knowing that there will be a tube attached to me constantly and worrying bout catching it :-/

Thanks again everyone :-) x


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Hi my daughters are like that,it use to be called Brittle Diabeties,thats when you just cant control your sugars,theres a Ice programe that you can go on in your local hospital that will give you a good insight to all you need to know about Diabeties .Have you got some under lying bug going on inside you,do you get infections easliy all these things will knock your sugars high.Have you thought of going on a pump one of my daughters was the 1st person to go on it,and it really turn everything around for her. Both my girls have diabeties and both of them are very different.Remember dont let it Rule you .You Rule Diabeties.:)
 
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