Type 1 with a serious ED

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
Hi @staycee_xx Firstly know that you are not alone here, there are many in exactly the same boat, it’s a disordered way of thinking in that believing insulin will make you fat and this takes over the mind in that it becomes a priority to ‘control’ weight through insulin manipulation when the reality is that you need insulin to stay alive.

Here’s my point - the reason type 1’s are entitled to free prescriptions is because insulin keeps us alive and each time you enter DKA aside from the damage it causes is that you are bringing yourself closer to death. Sorry there isn’t any nice way to say this but you need to take regular amounts of insulin and start getting yourself well again taking one day at a time.

The sad and stark reality to having an eating disorder with type 1 is that you are continuously damaging your body and although you may feel fine now there does come a point when all the complications start to multiply and affect your quality of life, although much can be done it won’t reverse the damage you are doing now.

Please stop for a minute and think about your DKA admission as your chance to do something positive for yourself and make some small changes ?

Also try and think about the benefits of good health over your appearance, I would rather be carrying a few extra pounds and have my vision than blind and thin, that is the truth of your situation, please seize the oppprtunity now to do something positive for yourself and your future x

Thank you. I know I am damaging myself with my actions and I need to change how I think. I agree completely and I hope I can manage to do it before its too late x
 
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DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Hi all,
Ive have joined this forum this evening as I need to speak to someone about my ED.
I was diagnosed with T1 when I was 27 (about 4 years ago). Before I was diagnosed I was always the ‘party girl’ and lived my life to the full. After my diagnosis I calmed down a lot, got into carb counting, attending all appointments and living a healthy ‘normal’ life.
After about a year, I started to put on weight. In my mind this was down to my diabetes and, specifically, insulin. I got into my head that i was injecting fat into my body and I started skipping injections.
Its now at the point where I can go 3-4 days without my insulin and only when I start to feel a bit rubbish do I take between 20-30 units to bring my sugars down, before the routine starts all over again.
Whilst I am not injecting, i am binge eating and I have become obsessed with counting calories (not in an attempt to reduce my calorie intake but to try and make patterns with the numbers).
I was taken to hospital DKA on Christmas morning. I was unconscious until 28th December. My blood sugars on admission to hospital were 47 and my acid levels were 6.4. The doctors were amazed I survived.
I have been out of hospital since New Years eve and, whilst I was determined to change my life, I have fallen back to old habits really quickly. I have stopped injecting again. I know what I am doing is wrong and extremely dangerous but I feel physically sick at the thought of injecting.
I have an appointment with a psychologist next week (my GP has made a fast track referral for me), I just hope they can help.
I dont know what I am expecting from this post but I felt like I needed to share!
Thank you x

Hi @staycee_xx , and welcome to the forum.

I'm so sorry you are having such a rough time of things at the moment, but very well done on seeking help. That's a massive step forward.

I'm not T1, and have never had to self-inject, so can't offer you any pearls of wisdom there, but I am someone who has recovered from an eating disorder. I know it's a tough old road, and I know how difficult it is to change harmful behaviours. It's no walk in the park, but it is do-able.

I'll tag @jacqfromdwed and @asortafairytale here. They are members of DWED (Disbetics With Eating Disorders) who have lots of experience with T1 and EDs.

Good luck with it all, and please do stick with it. Life's for living, and I honestly believe my own ED was the masking of me, in a bizarre and perverse way. I learned so much about myself and I learned how much I wanted to live my life; live it well and live it BIG.
 

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
Hi @staycee_xx , and welcome to the forum.

I'm so sorry you are having such a rough time of things at the moment, but very well done on seeking help. That's a massive step forward.

I'm not T1, and have never had to self-inject, so can't offer you any pearls of wisdom there, but I am someone who has recovered from an eating disorder. I know it's a tough old road, and I know how difficult it is to change harmful behaviours. It's no walk in the park, but it is do-able.

I'll tag @jacqfromdwed and @asortafairytale here. They are members of DWED (Disbetics With Eating Disorders) who have lots of experience with T1 and EDs.

Good luck with it all, and please do stick with it. Life's for living, and I honestly believe my own ED was the masking of me, in a bizarre and perverse way. I learned so much about myself and I learned how much I wanted to live my life; live it well and live it BIG.

Thank you for this. I am grateful for any advice at the moment x
 

Juicyj

Expert
Retired Moderator
Messages
9,016
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Thank you. I know I am damaging myself with my actions and I need to change how I think. I agree completely and I hope I can manage to do it before its too late x

I know it may of sounded a little harsh and I appreciate you have a good grasp on the reality of the situation so I really hope you do get the right support to help you move on from this, my friends daughter is a type 1 who used insulin to control her weight she’s only early twenties and a bright young thing but already has eye and nerve issues and is moving forward but still has some issues but it’s harder for her to talk about it, you sound so much more positive and are talking about it so I am sure you will be fine, where there’s a will there’s a way :)
 
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staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
I know it may of sounded a little harsh and I appreciate you have a good grasp on the reality of the situation so I really hope you do get the right support to help you move on from this, my friends daughter is a type 1 who used insulin to control her weight she’s only early twenties and a bright young thing but already has eye and nerve issues and is moving forward but still has some issues but it’s harder for her to talk about it, you sound so much more positive and are talking about it so I am sure you will be fine, where there’s a will there’s a way :)

No I definitely need to hear it. Tough love an all that! I think its relief more than anything. I’ve never spoken to anyone or admitted I had missed injections. Its been going on for 3 years and theres only so many excuses you can make for ‘missed’ drs appts etc. I know I need to change my ways and I am grateful for your support x
 

ExtremelyW0rried

Well-Known Member
Messages
333
Type of diabetes
Type 1
It might be too soon or you might not like the idea but what about an insulin pump? One cannula change every three days.
There's also something called an I-port which it made by medronic and you put it on and inject through it. Means that you don't have to wear a pump if you don't like the idea of being attached to something all the time but don't have to inject.

One plus of the pump - not that I am suggesting you have any need to worry about your weight at all - is that it runs only on fast acting insulins whixh are less likely to cause weight gain. Also if you exercise you can reduce the insulin you are taking so you don't hypo and have to treat the low. It may be something to consider?
 
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staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
It might be too soon or you might not like the idea but what about an insulin pump? One cannula change every three days.
There's also something called an I-port which it made by medronic and you put it on and inject through it. Means that you don't have to wear a pump if you don't like the idea of being attached to something all the time but don't have to inject.

One plus of the pump - not that I am suggesting you have any need to worry about your weight at all - is that it runs only on fast acting insulins whixh are less likely to cause weight gain. Also if you exercise you can reduce the insulin you are taking so you don't hypo and have to treat the low. It may be something to consider?

Thank you, I might discuss this with my GP at my next appointment. The idea of having no control is making me feel slightly anxious. Its definitely something to consider though x
 

ExtremelyW0rried

Well-Known Member
Messages
333
Type of diabetes
Type 1
Thank you, I might discuss this with my GP at my next appointment. The idea of having no control is making me feel slightly anxious. Its definitely something to consider though x

You tell the pump how much you want it to deliver and when though.
It just means when you eat you can just put the insulin amount into your pump and it delivers it. It delivers a small amount of background insulin all the time but you programme it to do so.
I don't really think about the fact I'm giving insulin when I use it in the same way as I did when injecting so psychologically you may feel differently about it.
 

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
You tell the pump how much you want it to deliver and when though.
It just means when you eat you can just put the insulin amount into your pump and it delivers it. It delivers a small amount of background insulin all the time but you programme it to do so.
I don't really think about the fact I'm giving insulin when I use it in the same way as I did when injecting so psychologically you may feel differently about it.

I dont really know a lot about the pumps to be honest. I’ve been in denial about the whole diabetes condition for a couple of years. I had an ignorance is bliss attitude! Silly, I know!
I will certainly have a chat with my GP, it may be a good way forward x
 

ExtremelyW0rried

Well-Known Member
Messages
333
Type of diabetes
Type 1
I dont really know a lot about the pumps to be honest. I’ve been in denial about the whole diabetes condition for a couple of years. I had an ignorance is bliss attitude! Silly, I know!
I will certainly have a chat with my GP, it may be a good way forward x

Yes it is worth looking at. It is maybe a bit overwhelming right now and it might seem an upheaval but longer term it might be a better solution.
It is about the closest you can get to not being diabetic whilst still being diabetic in my opinion. It isn't a miracle and it takes work to sort out the background levels but it gives you a lot more flexibility and crucially you wouldn't have to physically inject every time you eat.
I have a t1 friend who ignored it totally for about a decade. She is now on a pump and has much better control and a much better outlook but unfortunately she has been left with a lot of complications from when she just behaved as though she still had a functioning pancreas.
Do you have a diabetes specialist nurse? I know it's tough when you don't feel like it probably, but give them a call if you have. The GP will probably have limited knowledge of insulin pumps but a DSN should know quite a lot and may be able to show and demonstrate various ones to you.
 

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
Yes it is worth looking at. It is maybe a bit overwhelming right now and it might seem an upheaval but longer term it might be a better solution.
It is about the closest you can get to not being diabetic whilst still being diabetic in my opinion. It isn't a miracle and it takes work to sort out the background levels but it gives you a lot more flexibility and crucially you wouldn't have to physically inject every time you eat.
I have a t1 friend who ignored it totally for about a decade. She is now on a pump and has much better control and a much better outlook but unfortunately she has been left with a lot of complications from when she just behaved as though she still had a functioning pancreas.
Do you have a diabetes specialist nurse? I know it's tough when you don't feel like it probably, but give them a call if you have. The GP will probably have limited knowledge of insulin pumps but a DSN should know quite a lot and may be able to show and demonstrate various ones to you.

Thats really helpful. Its comforting knowing you’re not alone. I find it embarrassing to talk to someone face to face about the problems I have with bingeing and injecting and I always play it down. I guess I feel stupid but knowing it affects a lot of people makes me feel slightly more assured. I just need to be open and honest with professionals instead of lying and covering things up/making excuses.
I do have a DSN (appointed following my discharge from hospital), I havent met with her yet (appt due on 14th feb - of all days!) but will ask her for some options when we meet.
Thanks again for your help x
 
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paulus1

Well-Known Member
Messages
843
Type of diabetes
Type 2
Treatment type
Tablets (oral)
are you getting counselling if not get it. you must take it.

Short term
These are the short term symptoms of patients with diabulimia

Medium term
These are the medium term symptoms of patients with diabulimia. They are prevalent when diabulimia has not been treated and hence also include the short term symptoms

Long term[edit]
If a person with Type 1 diabetes who has diabulimia suffers from the disease for more than a short time—usually due to alternating phases during which insulin is injected properly, and relapses, during which they have diabulimia—then the following longer-term symptoms can be expected:

  • Severe kidney damage - high blood sugar can overwork the kidneys, eventually leading to kidney failure and the need for a kidney transplant [6]
  • Severe neuropathy (nerve damage to hands and feet)
  • Extreme fatigue
  • Edema (during blood sugars controlled phases)
  • Heart problems
  • High cholesterol
  • Osteoporosis
  • Death
sorry pet your not fat and even if you where its better than being dead. you need support get your doctor to sort it urgently.
 
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staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
are you getting counselling if not get it. you must take it.

Short term
These are the short term symptoms of patients with diabulimia

Medium term
These are the medium term symptoms of patients with diabulimia. They are prevalent when diabulimia has not been treated and hence also include the short term symptoms

Long term[edit]
If a person with Type 1 diabetes who has diabulimia suffers from the disease for more than a short time—usually due to alternating phases during which insulin is injected properly, and relapses, during which they have diabulimia—then the following longer-term symptoms can be expected:

  • Severe kidney damage - high blood sugar can overwork the kidneys, eventually leading to kidney failure and the need for a kidney transplant [6]
  • Severe neuropathy (nerve damage to hands and feet)
  • Extreme fatigue
  • Edema (during blood sugars controlled phases)
  • Heart problems
  • High cholesterol
  • Osteoporosis
  • Death
sorry pet your not fat and even if you where its better than being dead. you need support get your doctor to sort it urgently.

Thank you. I hadn’t even heard of diabulimia before I joined here this evening. I have an appointment with a psychologist on 15th feb and DPN on 14th x
 
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paulus1

Well-Known Member
Messages
843
Type of diabetes
Type 2
Treatment type
Tablets (oral)
excellent. its important that its dealt with by your full health team. your not alone in this just remember if your picture is right then you are not fat or overweight. your mind may be locked on that but its the least important health issue you face. i have the opposite issue i over eat. food issues are hard for people to understand. make sure you tell your diabetic team that you have this issue. is there anyone tha tcould support your medication until your in a better situation.
 
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Diakat

Expert
Retired Moderator
Messages
5,591
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
The smell of cigars
If you struggle to talk face to face then write it down. You have time between now and the DSN appointment to note how you feel and what you do in response to those feelings.
 
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donnellysdogs

Master
Messages
13,233
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
A psychologist can help you to change your thinking around diabetes and insulin, but bear in mind you must go in with open ears and willing to change.

I've had one to one therapy ref cancer and the likes but it has to be the person that actually wants to change and to find everything as joyful and a blessing rather than negativity around living...

You can do it, I had a friend in ED clinic for 6 months and she came out otherside ok. Still obsessive but is now generating her obsession in to helping others beat it rather than being one that is defeated by it.
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
She’s got a Libre, so I doubt she fingerpricks that much. She probably has a pump. And I’m not impressed with her attempts to run the country either :p /endpoliticalrant
Impressed or not, she still runs the Country with her condition so I can only imagine the pressure and stresses adding to it all whilst managing her health.
 

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
A psychologist can help you to change your thinking around diabetes and insulin, but bear in mind you must go in with open ears and willing to change.

I've had one to one therapy ref cancer and the likes but it has to be the person that actually wants to change and to find everything as joyful and a blessing rather than negativity around living...

You can do it, I had a friend in ED clinic for 6 months and she came out otherside ok. Still obsessive but is now generating her obsession in to helping others beat it rather than being one that is defeated by it.

Thank you.
The problem I have at the moment is that I know its dangerous and stupid but at the moment the thought of injecting and ‘Absorbing’ my binge calories outweighs this and wins all the time.
Hopefully attending a clinic will change my thinking x
 

staycee_xx

Member
Messages
18
Type of diabetes
Type 1
Treatment type
Insulin
excellent. its important that its dealt with by your full health team. your not alone in this just remember if your picture is right then you are not fat or overweight. your mind may be locked on that but its the least important health issue you face. i have the opposite issue i over eat. food issues are hard for people to understand. make sure you tell your diabetic team that you have this issue. is there anyone tha tcould support your medication until your in a better situation.

I havent told anyone about what im doing. I pretend to inject when i am around people, i insert the needle but dont actually administer any insulin. My family think I had too much alcohol over Christmas and thats how I ended up in hospital. Im was so embarrassed that I just agreed with them and went along with it.
It was the DN in ICU who dragged it out of me because it was obvious by my readings that something had been going on for months.
I am going to go to my appt and then maybe sit down with family and friends to discuss it with them then x
 
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