Feeling upset and lonely about type 1

ruby_jane26

Active Member
Messages
26
Type of diabetes
Type 1
So I was diagnosed in 2017 with type 1 and since the beginning I’ve had to deal with it in my own (as I should, right haha). My nurse wasn’t always there and my mum is and was quite helpless with it all. I haven’t had support with this and even when eating normally I’ve gained weight - over a stone since diagnosis. I try to explain to my mum that I’m going to change my diet. I say that I’m going to cut down carbohydrates first (as carbs usually have a lot of calories) and that’ll mean I take less insulin.. and she tells me off telling me that if I don’t have enough insulin my blood will “get thick and I will get sick”. Although I’ve explained to her that that’s not how it works she still argues with me. She doesn’t know what to do when I have a hypo or hyper and I always worry about going to sleep and never waking up again. I know this sounds silly but these are honestly my true thoughts. I have so much anxiety around my condition. I had a friend who died in her sleep a few years back due to type 1 diabetes so it’s not exactly irrational of me to be fearful. I know this is my condition and it’s no one else’s responsibility but my own but I honestly feel like I’ve been thrown in the deep end and I still feel like this almost 2 years later. I feel really lonely and I don’t know anyone personally who actually UNDERSTANDS. My mum and I have had so many arguments and my mum thinks she understand because she works with 2 diabetic people at her work place. For example, if my blood sugar is low she’d ask me am I injecting properly (“is the needle giving me all the insulin”?!?!) which is the exact opposite reason for why my blood sugar would be low. It’s frustrating living like with someone who doesn’t understand and refuses to understand.
I’m not sure what to do other than move out but that’s quite extreme.

I honestly try to ignore this condition as much as I can do that it doesn’t consume my life but it’s not working
 

JAT1

Well-Known Member
Messages
563
Type of diabetes
Type 1
Treatment type
Insulin
Welcome to the forum Ruby Jane! I am also type 1, diagnosed last year. Sounds like you have two problematic situations you are dealing with. One is an overbearing, completely misinformed mum and the other is your type 1. It would be best if you could make your own meals and snacks. That way you have control. Count your carbs and make sure that you are taking the correct amount of insulin for what you eat. Don't count calories, that's old-school. It's carbs that make you gain. So gradually stop eating as many carbs as possible. That's what worked for me. You will find that different type 1s deal with their condition in different ways. Type 2 is a whole different physiology. It's very useful to listen and learn from all the advice here and then find out what is working for you. Living on your own is great (for me). I don't have to listen to anyone's disapproval which just complicates an already complicated life dealing with the regime of Type 1. Best of luck moving forward. Never stay discouraged.
 

LooperCat

Expert
Messages
5,223
Type of diabetes
Type 1
Treatment type
Other
Welcome, @ruby_jane26 - it’s a club none of us wanted to join! Can I be rude and ask how old you are? I was diagnosed at 23, back in 1998, so if you’re old enough to leave home but haven’t, we may have been similar ages at diagnosis. I’m sorry to hear about your friend, it’s not surprising you have anxiety about it all. What do you use to manage things? Pump/injections? Blood tests or Libre/CGM? The more you can tell us, the more we can help.

The problems with mums is that WE ALWAYS KNOW BEST and it’s very hard to change our thinking on things once we’re convinced we’re right :D I’m the mum of a teenager, so can see both sides of that one, hehehe. Just keep holding your ground.

It’s quite normal to gain weight when you’re diagnosed and start taking insulin, as your body is actually using the food you’re eating, rather than peeing it all out and eating itself. But I understand your frustration, I went through similar myself.

Not many type ones decide to drop carbs to help manage their condition - however, I do, and so does @kitedoc - if it’s the route you want to go down, I’d thoroughly recommend Dr Bernstein’s Diabetes Solution - https://amzn.to/2HR4Yy5 - it’s kind of the bible for low carbing. A fair bit isn’t relevant to the U.K. as it talks about where to buy supplies, but there’s a lot of useful stuff to pull out of it. Having said that, most of the type ones here eat plenty of carbs and dose appropriately (tagging @helensaramay @Knikki @Scott-C ), but I could never make that work for me.

If it’s any consolation, I had no idea what I was doing for years, in fact it’s only recently I found a way that works for me. Everyone’s mileage varies.
 

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.
Hi @ruby_jane26 and welcome to the forums.

There are plenty of people here who do understand. But if you feel that you'd benefit from a support group then head over to the blue corner,

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

You might be lucky enough to find a group in your area. Otherwise we are here to help and you can rant away to your heart's content (as long as you're not rude!)

Catch you later.
 

ruby_jane26

Active Member
Messages
26
Type of diabetes
Type 1
Welcome to the forum Ruby Jane! I am also type 1, diagnosed last year. Sounds like you have two problematic situations you are dealing with. One is an overbearing, completely misinformed mum and the other is your type 1. It would be best if you could make your own meals and snacks. That way you have control. Count your carbs and make sure that you are taking the correct amount of insulin for what you eat. Don't count calories, that's old-school. It's carbs that make you gain. So gradually stop eating as many carbs as possible. That's what worked for me. You will find that different type 1s deal with their condition in different ways. Type 2 is a whole different physiology. It's very useful to listen and learn from all the advice here and then find out what is working for you. Living on your own is great (for me). I don't have to listen to anyone's disapproval which just complicates an already complicated life dealing with the regime of Type 1. Best of luck moving forward. Never stay discouraged.

Haha yes now come to think of it, calorie counting is old school. I think making my own meals is the way to go- I’ll be in control of that at least. Thank you for the encouragement!
 
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ruby_jane26

Active Member
Messages
26
Type of diabetes
Type 1
Welcome, @ruby_jane26 - it’s a club none of us wanted to join! Can I be rude and ask how old you are? I was diagnosed at 23, back in 1998, so if you’re old enough to leave home but haven’t, we may have been similar ages at diagnosis. I’m sorry to hear about your friend, it’s not surprising you have anxiety about it all. What do you use to manage things? Pump/injections? Blood tests or Libre/CGM? The more you can tell us, the more we can help.

The problems with mums is that WE ALWAYS KNOW BEST and it’s very hard to change our thinking on things once we’re convinced we’re right :D I’m the mum of a teenager, so can see both sides of that one, hehehe. Just keep holding your ground.

It’s quite normal to gain weight when you’re diagnosed and start taking insulin, as your body is actually using the food you’re eating, rather than peeing it all out and eating itself. But I understand your frustration, I went through similar myself.

Not many type ones decide to drop carbs to help manage their condition - however, I do, and so does @kitedoc - if it’s the route you want to go down, I’d thoroughly recommend Dr Bernstein’s Diabetes Solution - https://amzn.to/2HR4Yy5 - it’s kind of the bible for low carbing. A fair bit isn’t relevant to the U.K. as it talks about where to buy supplies, but there’s a lot of useful stuff to pull out of it. Having said that, most of the type ones here eat plenty of carbs and dose appropriately (tagging @helensaramay @Knikki @Scott-C ), but I could never make that work for me.

If it’s any consolation, I had no idea what I was doing for years, in fact it’s only recently I found a way that works for me. Everyone’s mileage varies.

Not rude at all haha, I’m 19 so not too much younger than when you were diagnosed. I have injections at the moment (pump funding case has been put in so I’m waiting for the outcome) and I use a Libre. I’m glad you understand as you can see from both viewpoints. I think dropping carbs would be the best option for me! It’ll help with control too which is what I want.
I haven’t read that book, I’ve been meaning to buy it for a while. That’s reassuring, I honestly thought I should know what I’m doing by now but if others were struggling for years after diagnosis then I’m not the only one. Thanks for your help
 

ruby_jane26

Active Member
Messages
26
Type of diabetes
Type 1
Hi @ruby_jane26 and welcome to the forums.

There are plenty of people here who do understand. But if you feel that you'd benefit from a support group then head over to the blue corner,

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

You might be lucky enough to find a group in your area. Otherwise we are here to help and you can rant away to your heart's content (as long as you're not rude!)

Catch you later.

Hi, I’ve never heard of this but thank you I’ll check it out!
 

Juicyj

Expert
Retired Moderator
Messages
9,018
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Hello @ruby_jane26 :)

Sorry to hear about your problems with your mum, that's hard to deal with, is there any possibility if you get your nurse to enrol you on the DAFNE (Dose Adjustment for Normal Eating) course that your mum could come with you ? If she were able to attend she would understand so much more about how it is manageable to live with t1 and adjustments with insulin dosing. The course also helps with lots of other areas like exercise, sick day rules as well as meeting other type 1 diabetics which helps you to feel that you're not alone.

Your not alone here and there's lots of folk always about you can chat to :)
 
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JMK1954

Well-Known Member
Messages
520
Type of diabetes
Type 1
Treatment type
Insulin
Well, I was aged 50 when my mum came with me to a hospital appointment (nothing to do with diabetes). We planned to go into the city centre afterwards. As I got up to walk into the consultant's office, my mum started producing a selection of cakes and biscuits from her shopping bag and thrusting them in my direction, with the comment, 'You might go hypo'. (I had been diagnosed 40 years at this point and was fully-equipped with glucose in my handbag and my coat pocket and biscuits in my own shopping bag.

I apologised to the consultant because I knew my BP would be up when checked and I was feeling really exasperated. It was slightly up. She smiled and said she had met mother-induced raised blood pressure before. To be honest, I think my son suffers from it at times. I think the problem is almost universal.
 

NicoleC1971

BANNED
Messages
3,451
Type of diabetes
Type 1
Treatment type
Pump
Hello and welcome Ruby Jane! It is early days and as Mel says, you have the tools with the libre and possibly the pump, to experiment with different dietary approaches. I am with Dr Bernstein and Mel with regards to the seeming impossibility of calculating insulin doses when eating lots of carbs but choice is the most important thing here because I think for some who eat similar meals at similar times (not me) find they can get the basal and bolus doses right.
As for mums, ;you may just need to lower your expectations of her 'getting it'; hopefully she is a good mum in other ways! She can't solve the issues that come up as we type 1s are our own experts but I am sure she will be chuffed and proud to see you getting on with life without T1 getting you down (no mean feat).
How much weight do you feel you really need to lose? Obviously if you'd dropped from a normal weight pre diagnosis then you'd expect to gain a little back. On the other hand if you feel you are really piling it on, then you might find the low carb approach really helps with both appetite control and insulin doses.
I've found this lady's vdeios great btw (she is a type 1 like Dr Bernstein but I find her presentations a little easier to get into): Her name is Jody Stanislaw. There's also Adam Brown (google free ebook Bright Spots and Landmines). Both American and taking a low carb approach but perhaps not as rigid as Dr B!
https://www.drjodynd.com/
 
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kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Hi @ruby_jane26, and welcome to this site. Thank you for letting us know of your troubles - that takes courage !!
Apologies for being late to reply!! If you take a peek at the Type 1 Forum thread - Type 1 'stars R us - you can see why !!
The following is my own experience and not intended as health professional advice or opinion:
(sorry no theme music, lights or action) !! :bag::bag: But please read and re-read what is below if you need to!
If your mother wishes to also read it, please let her !!

I was 13 when diagnosed, 52 years ago, before pens, pumps, glucose monitors or fancy insulin.:dummy::dummy:
At age 19 I recall, as an male Aussie on a school break, working on a farm shovelling cow pats onto a truck for fertiliser use
and wondering what life held for me. No support groups, email, mobile phones. Nothing romantic about it at all!!

I get the loneliness, the 'being different', and for me, wearing it like a badge - being stubborn and independent helps
but only so much.:watching::watching:
But like others with some years under our belts (e.g. @Knikki, @Grant_Vicat, and others) you never stop learning -
and the beauty of this site is that you can learn from other's mistakes and experiences!!!:banghead::banghead:

It sounds like your mother's views on diabetes might be shaped by her interaction with Type 2 diabetics at her workplace?
Would she be amenable to learning about the differences between Type 1 and Type 2 - say from info on the Home page here?
And also about the various diets available for T1D and T2D? I kinda mother-daughter learning experience?:headphone::headphone::dummy1::dummy1:

You will see that the variety of diets includes low carb high fat (LCHF) as well as others - they are all regarded as 'legit' with some being better for some than others. You may wish to try them out and see what suits you best.
It is like trying to find common ground between you, using an "external range of experts". :pompous::pompous::pompous:
And are there other family members who could be involved?
And please let your mother know that this site in conjunction with medical practitioners who have been running a successful,
now NHS-approved Low Carb programme for T2Ds and about to start one for T1Ds !! (and why would this site and some
doctors promote these programmes if there were major health issues for patients in doing so)?

My experience - and each of us is different so may not apply to you necessarily, is that the two things that in
all my 52 years on insulin made the greatest differences were:
my moving to use of an insulin pump in 2012 (45 year 'in') and
moving to a very low LCHF diet this past Xmas. (very low = approx less than 40 g carb per day).
90 g carb per day did not work for me.
As you might imagine I have seen many variations of diabetic diets over the years.
For me only the LCHF diet has really worked and I rate it as the number one influence on my diabetes and the
pump as the second.:):)
For basics of the very Low Carb High Fat diet, I used Dr Bernstein's book and used the dietdoctor.com as a help for when
I started the diet and needed some guidance about issues early on.
As others have suggested you may find others who explain the LCHF diet (Dr B. emphasises Low Carb High Protein)
more to your liking than Dr B..:pompous: see post above by @Mel dCP and @NicoleC1971.
But ... I did discuss things with my DSN(= DNE in Oz)! before starting. As I lowered my carb intake my need for short-acting (bolus) insulin before meals was less and also over those first few weeks my long-acting (basal) insulin also decreased a little.
Other wise hypos could happen but any that did were only very mild ones.
So from about 40 units total daily insulin to about 26 units.
But we are talking about on 30 g of carbs per day, and according to Dr Bernstein's advice, - counting 50% of the grams of
protein eaten as carbs also. His book (or e-book, which saves the hassle of ordering and picking up the book) explains why.
Just as the dietdoctor.com, gives the guide on dealing with the changes one undergoes as one's body adapts to the new diet.

Whilst we cannot give professional advice or opinion on this site, we can let you know of your own experiences and make suggestions which you might take to your health team to discuss.
Not all doctors and DSNs know, understand or accept low carb diets - I found my nurse was more relaxed about it than my specialist!! :nurse::snaphappy:
Several issues: doctors in my experience are often hung up about fat - as you lower carb intake, calorie-wise protein and fat intake increase - and if 50% of one's protein intake counts as carbs on such a diet then protein is not unlimited either.
From my reading* and experience of seeing doctors over the past 52 years many doctors seem to be indoctrinated into believing that saturated fat is bad for health and that low fat diets are best. (but try to find a low fat yoghurt that is low in sugar)!!
Research however does not bear this belief out.*
And then there is fat and cholesterol - again independent research does not bear this out either.*
And even an article in the prestigious Lancet medical journal last year about low carb diets being associated with higher risk of heart disease has been debunked.*
* suggest any doubters to subscribe to zoeharcombe.com (I am sure they can afford UKP 30 per quarter)!!
There are some potential issues with insulin pumps too that may be raised but perhaps let us all wait and meet that issue if it arises.
Briefly:
Emotions: I learnt to breathe - holding breath in or breathing rapidly made me unable to think clearly
(to think requires brain to be in gear):confused:
Use humour and self humour: injection time was 'javelin practice', an out-of-range (blood sugar level) BSL was due to the weather, the side of bed one got out of that morning etc etc. A husband and son used to bet on what the mother's pre-dinner
BSL would be, and the loser did the washing up !! Stressing about what went wrong only puts BSLs up.
Being prepared to admit a 'diabetes gremlin' within one's body/mind was responsible and working out how to prevent the
problem next time is far less stressful !!:shifty::shifty::smug::smug:
Engage in interests: interests, hobbies can distract us from the unfairness of life, give us initiative, confidence, help us meet people with like interests, be good for CVs, may include healthy (non-risky) exercise:doctor: but not to drain one's pocket !!
Awareness: I agree entirely with @Knikki, as much as we T1Ds would all like a holiday from this condition, it cannot be
done, without risk. I can never take my diabetes for granted. The need to think ahead to prevent problems becomes
second nature and, as I found, helped me develop skills for use in my later life and work career. :playful:
Make every post a winning post !!
Best Wishes, and please keep asking questions.

Needles, finger-.....Mistakes........Be not afraid........... Life...............Keep reading.......Nothing is
pricks............................................to ask for help..................................and learning.........impossible

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