8 months in and struggling

MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
I was diagnosed with type 1 diabetes in March 2019, since then I have completed my A-levels and moved 100miles away from home to university. As soon as I was diagnosed I really wanted someone else to talk to who knew what having T1 diabetes was like, it seems that even though people around me try to understand what its like for me - they never quite do and I find it quite isolating (especially since moving to university). I regularly find myself getting very stressed about the levels of my blood sugars as I know that they're far from perfect and it feels like an impossible task trying to make them more stable! I feel very out of control of my blood sugars and often catastrophise about possible future complications if I don't get them sorted out. For this reason I would love to have someone who knows what it's like being newly diagnosed to talk to, I need someone to tell me if my blood sugars are as bad as I think they are and honestly I just want someone to tell me that I'm going to be okay cause every time I think about a lifetime of this it makes me want to cry.
 

mouseee

Well-Known Member
Messages
644
You've come to the right place. This is the perfect place for all the advice and support you need. I'm T2 not t1 but there'll be plenty around soon!
In the meantime, maybe post some of your numbers and people will give you an honest opinion and advice - no one can give medical advice but there are plenty of experienced t1s to help you.
 

MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
You've come to the right place. This is the perfect place for all the advice and support you need. I'm T2 not t1 but there'll be plenty around soon!
In the meantime, maybe post some of your numbers and people will give you an honest opinion and advice - no one can give medical advice but there are plenty of experienced t1s to help you.
Thank you so much, I'll post some general numbers below :)
 

MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
One of the hardest things right now is that there's not really a pattern to my blood sugars, one day I'll spike up to 16mmol/L and stay high for the rest of the day and other days I'll be on a roller-coaster have multiple hypos a day. The only pattern is that I almost always spike ridiculously high (often 18mmol/L +) after breakfast and then struggle to regulate my bloods the rest of the day, I'd say my average blood sugar 2 hours after meals is 12-14mmol/L (but like I say this changes all the time as there really isn't an obvious pattern) - is that normal?
 

urbanracer

Expert
Retired Moderator
Messages
5,186
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
I was diagnosed with type 1 diabetes in March 2019, since then I have completed my A-levels and moved 100miles away from home to university. As soon as I was diagnosed I really wanted someone else to talk to who knew what having T1 diabetes was like, it seems that even though people around me try to understand what its like for me - they never quite do and I find it quite isolating (especially since moving to university). I regularly find myself getting very stressed about the levels of my blood sugars as I know that they're far from perfect and it feels like an impossible task trying to make them more stable! I feel very out of control of my blood sugars and often catastrophise about possible future complications if I don't get them sorted out. For this reason I would love to have someone who knows what it's like being newly diagnosed to talk to, I need someone to tell me if my blood sugars are as bad as I think they are and honestly I just want someone to tell me that I'm going to be okay cause every time I think about a lifetime of this it makes me want to cry.

Hey, welcome to the forums.

Ok so compared to you I'm an old git, I contracted T1 at the age of 54 and that was over 4 years ago. I think the emotions that we experience are similar no matter what age you are when it happens and everybody here has experienced it so you are amongst friends when you come here.

It is important to understand that stress raises your cortisol levels and this in turn leads to increased glucose levels (a nice little trick diabetes plays on you there) so relax. Easy to say, but it will help you in the longer term if you can find a way to accept it.

You've maybe had a stressful period moving away from home for the first time and starting Uni' and this probably hasn't helped.

It sounds as though you may still be experiencing the honeymoon phase where your pancreas springs back into life sporadically and gives you some extra insulin. The time length of this varies from person to person so it's difficult to predict how long it will last.

Your glucose levels may settle down at some point so hang in there, it gets easier to manage with time and modern management methods can help to keep you free from complications. So don't worry about all the scare stories, they mostly date back to an age where diabetes was almost a death sentence, but we have people here in the forums who've led a relatively healthy life for many many years.

Come join us in the T1 stars are us thread, put your feet up and have a good old moan. Theres also a forum for younger people if you don't want to hang out with us oldies.

Be lucky.
 
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urbanracer

Expert
Retired Moderator
Messages
5,186
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
One of the hardest things right now is that there's not really a pattern to my blood sugars, one day I'll spike up to 16mmol/L and stay high for the rest of the day and other days I'll be on a roller-coaster have multiple hypos a day. The only pattern is that I almost always spike ridiculously high (often 18mmol/L +) after breakfast and then struggle to regulate my bloods the rest of the day, I'd say my average blood sugar 2 hours after meals is 12-14mmol/L (but like I say this changes all the time as there really isn't an obvious pattern) - is that normal?

What are you eating for brekky?
 

Juicyj

Expert
Retired Moderator
Messages
9,018
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Hello @MCart18 and welcome to the forum :)

I am about 8 years in now since my diagnosis but remember the early days very well, I learnt fairly early on that there's no such thing as perfect, for a type 1 learning to live with imperfection is key. Some days great, some days terrible, it took me a while to adjust my head to that. What I did do early days was to read and learn. Using a support forum like this is also really important to help you realise that your not alone and that others can help when your struggling so it lessens the burden.

Couple of questions, do you have a diabetic nurse ? What Insulins are you on and are you using a Libre ?

Fine tuning things and stabilising your levels will help, there's a few things you can do, grab yourself a copy of 'think like a pancreas' written by a type 1, there's also a course called Dose Adjustment for Normal Eating DAFNE which you can enrol in but it's generally after a year or so before the NHS will refer you as Urb mentioned above if your still honeymooning then it's easier to manage once this has passed. Talk to your team too, also speak to the students union at your Uni, there will be other diabetics at your Uni and they should help put you in touch. Let us know how you get on ?
 
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mouseee

Well-Known Member
Messages
644
Also important to tell uni about your diagnosis if you haven't. They need to know so they can make reasonable adjustments to things like exams. Allowing you to test part way through or ear if you need to etc. You definitely wont be the only one with t1 at uni.
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi and welcome. I suspect your insulins may need balancing together with possibly improving your diet? A few things. Can you let us know what are the two insulins you are on? Are you counting the carbs at mealtimes when using the Bolus (fast-acting insulin). You should be adjusting the number of insulin shots at mealtime to suit the amount of carbs in the meal. Your Basal (24 hour insulin) may need balancing. It's purpose is to balance the background glucose output form the liver. If your BS goes up or down when you haven't eaten for perhaps 8-10 hours then some adjustment may be needed. Your diet needs to be sensibly low in carbs to avoid BS spikes and weight gain. It's not as critical as it is for T2s but your Bolus shots need to be right. If you need further feedback then it may be worth posting on the T1 forum.
 

MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
Hey, welcome to the forums.

Ok so compared to you I'm an old git, I contracted T1 at the age of 54 and that was over 4 years ago. I think the emotions that we experience are similar no matter what age you are when it happens and everybody here has experienced it so you are amongst friends when you come here.

It is important to understand that stress raises your cortisol levels and this in turn leads to increased glucose levels (a nice little trick diabetes plays on you there) so relax. Easy to say, but it will help you in the longer term if you can find a way to accept it.

You've maybe had a stressful period moving away from home for the first time and starting Uni' and this probably hasn't helped.

It sounds as though you may still be experiencing the honeymoon phase where your pancreas springs back into life sporadically and gives you some extra insulin. The time length of this varies from person to person so it's difficult to predict how long it will last.

Your glucose levels may settle down at some point so hang in there, it gets easier to manage with time and modern management methods can help to keep you free from complications. So don't worry about all the scare stories, they mostly date back to an age where diabetes was almost a death sentence, but we have people here in the forums who've led a relatively healthy life for many many years.

Come join us in the T1 stars are us thread, put your feet up and have a good old moan. Theres also a forum for younger people if you don't want to hang out with us oldies.

Be lucky.

Hello,
Thanks so much for your advice I didn't know that stress released glucose which is probably a big factor effecting my blood sugars right now. I'll definitely check out a few more of those forums cause its nice having someone to talk moan to!
 

MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
Hello @MCart18 and welcome to the forum :)

I am about 8 years in now since my diagnosis but remember the early days very well, I learnt fairly early on that there's no such thing as perfect, for a type 1 learning to live with imperfection is key. Some days great, some days terrible, it took me a while to adjust my head to that. What I did do early days was to read and learn. Using a support forum like this is also really important to help you realise that your not alone and that others can help when your struggling so it lessens the burden.

Couple of questions, do you have a diabetic nurse ? What Insulins are you on and are you using a Libre ?

Fine tuning things and stabilising your levels will help, there's a few things you can do, grab yourself a copy of 'think like a pancreas' written by a type 1, there's also a course called Dose Adjustment for Normal Eating DAFNE which you can enrol in but it's generally after a year or so before the NHS will refer you as Urb mentioned above if your still honeymooning then it's easier to manage once this has passed. Talk to your team too, also speak to the students union at your Uni, there will be other diabetics at your Uni and they should help put you in touch. Let us know how you get on ?

Hiya,
I think I need to start accepting that I'm not going to get perfect blood sugars cause I'm just setting myself up to fail. Yes I have a team of diabetic nurses back at home and also a nurse at Uni that I contact if I need to, I'm currently on Levemir and Novorapid and I use the Libre yes. I'll definitely give that book a read thank you, I did the DAFNE course at the end of the summer as my parents thought it would be a good idea before going to live on my own - but being so early in my diagnosis I found it very overwhelming. I'll try and find some sort of diabetes community at my Uni as that would be helpful :)
 
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MCart18

Member
Messages
8
Type of diabetes
Type 1
Treatment type
Insulin
Hi and welcome. I suspect your insulins may need balancing together with possibly improving your diet? A few things. Can you let us know what are the two insulins you are on? Are you counting the carbs at mealtimes when using the Bolus (fast-acting insulin). You should be adjusting the number of insulin shots at mealtime to suit the amount of carbs in the meal. Your Basal (24 hour insulin) may need balancing. It's purpose is to balance the background glucose output form the liver. If your BS goes up or down when you haven't eaten for perhaps 8-10 hours then some adjustment may be needed. Your diet needs to be sensibly low in carbs to avoid BS spikes and weight gain. It's not as critical as it is for T2s but your Bolus shots need to be right. If you need further feedback then it may be worth posting on the T1 forum.

Hi,
When I got diagnosed I never thought that changes to my diet would be necessary but I probably would benefit from a lower carb diet (especially around breakfast), I have a healthy diet but quite carby also. I'm on Novorapid and Levemir, and yes I do carb count using food labels, an app I have and just generally my common sense - I'm pretty confident in my carb counting. My background doses have changed a lot recently and I really don't know what's working and what isn't. Thanks for your help I'll look at a T1 forum :)
 

urbanracer

Expert
Retired Moderator
Messages
5,186
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
Generally I have porridge, Weetabix or sometimes toast - so quite carby I know!

I quite like a porridge brekky myself. When I was using the Libre I found that porridge gave me a more gradual rise than something like Weetabix which gave me a pretty sharp spike and I don't eat it anymore.
 

urbanracer

Expert
Retired Moderator
Messages
5,186
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
@MCart18 - an additional thought! If you feel you would benefit from a support group then check out our adversaries (only joking, we're all in this together) over in the blue corner. Their forums aren't as lively as ours but they do have a list of support groups dotted around the country and maybe you'll be lucky enough to find something local.

https://www.diabetes.org.uk/how_we_help/local_support_groups
 
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Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi,
When I got diagnosed I never thought that changes to my diet would be necessary but I probably would benefit from a lower carb diet (especially around breakfast), I have a healthy diet but quite carby also. I'm on Novorapid and Levemir, and yes I do carb count using food labels, an app I have and just generally my common sense - I'm pretty confident in my carb counting. My background doses have changed a lot recently and I really don't know what's working and what isn't. Thanks for your help I'll look at a T1 forum :)
Hi again. You appear to be doing everything right and using the insulins correctly. Some carb reduction should help and otherwise just gaining more experience may help things settle.