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Type 1 Binge eating disorder

HayleyBumble

HayleyBumble

Member
Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
 
As a Type 2 I don’t understand everything you are going through, but I just wanted to wish you all the best with your upcoming appt with your DSN. I hope she’s a good listener and can provide the support you need.
 
Thank you! I've recently moved house so changed hospitals etc and finding the care in this area so much better!
Plus I've met this DSN briefly before so one less thing to feel anxious about I suppose!
 
HayleyBumble said:
Thank you! I've recently moved house so changed hospitals etc and finding the care in this area so much better!
Plus I've met this DSN briefly before so one less thing to feel anxious about I suppose!
Click to expand...

Hi HayleyBumble - It certainly sounds like you've been around the ED loop a few times.

I'm not a T1, and when I had my own ED, many moons ago, I hadn't had any diabetes diagnosis, but I can imagine it throws an extra few factors into the equation.

Right now, I don't have any specific wisdom to offer you, apart from to encourage you to continue to seek professional help. It sounds like you are finding things a bit better with your new team, so that's something to work on.

I hope @asortafairytale or @jacqfromdwed will be around sometime to say hello. Both are specialist mods in this area of the forum.

I'll be keeping my fingers crossed for you, Hayley. Wanting help and wanting to be better is a big step in the right direction.
 
HayleyBumble said:
Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
Click to expand...

Hiya

I understand exactly what you are going through, I have had binge eating disorder for many years and find it really hard with the diabetes, like you I can go weeks being really good but then it goes down hill really bad. I hope you get the support you need.
 
Hi there

I'm sorry that you are going through this it's so hard to get help for disordered eating behaviour rather than a straight up ED like anorexia or bullimia. That having been said you do sound like you may fit the criteria for binge eating disorder and there are now specific NICE guidelines for T1s with Binge Eating Disorder including swift treatment due to increased physical health risk. If you are a dwed member we have some guidelines and material you can take in. I also might know HCPs in your area if you want to email me via the DWED website contact us section with your location x

It's really easy to blame your self for not being able to 'get a grip' but if we could have thought our way out of this then we would have, I know qualified medical doctors with eating disorders, it's no ones fault, just like getting T1.

Have you tried any treatments in the past?
 
jacqfromdwed said:
Hi there

I'm sorry that you are going through this it's so hard to get help for disordered eating behaviour rather than a straight up ED like anorexia or bullimia. That having been said you do sound like you may fit the criteria for binge eating disorder and there are now specific NICE guidelines for T1s with Binge Eating Disorder including swift treatment due to increased physical health risk. If you are a dwed member we have some guidelines and material you can take in. I also might know HCPs in your area if you want to email me via the DWED website contact us section with your location x

It's really easy to blame your self for not being able to 'get a grip' but if we could have thought our way out of this then we would have, I know qualified medical doctors with eating disorders, it's no ones fault, just like getting T1.

Have you tried any treatments in the past?
Click to expand...
Thank you for your reply,

I've been on a 'unhelpful eating behaviours' course a year or so ago which was helpful to some extent but of course wasn't tailored for diabetes specifically. I've been to see a nhs diabetes psychologist fairly recently but only for a few sessions. I tend to be in a better place when the appointments actually come around for these things and then I find it hard to explain how I feel when I'm struggling, if that makes sense, I feel like I'm better and embarrassed for wasting their time.
I will see if I can get hold of the psychologist to book another appointment, I may find it more helpful this time round.

Thank you for pointing me in the direction of your website, I will take some time to read through the guidelines and email you my location :)
 
HayleyBumble said:
Thank you for your reply,

I've been on a 'unhelpful eating behaviours' course a year or so ago which was helpful to some extent but of course wasn't tailored for diabetes specifically. I've been to see a nhs diabetes psychologist fairly recently but only for a few sessions. I tend to be in a better place when the appointments actually come around for these things and then I find it hard to explain how I feel when I'm struggling, if that makes sense, I feel like I'm better and embarrassed for wasting their time.
I will see if I can get hold of the psychologist to book another appointment, I may find it more helpful this time round.

Thank you for pointing me in the direction of your website, I will take some time to read through the guidelines and email you my location :)
Click to expand...

Hi Hayley - Could it be worth trying to keep a bit of a journal when things aren't going so well, so that you could use that to help explain when you're in appointments?
 
DCUKMod said:
Hi Hayley - Could it be worth trying to keep a bit of a journal when things aren't going so well, so that you could use that to help explain when you're in appointments?
Click to expand...
This is definitely something I will start doing. I've not thought of doing this before but will prove do be very helpful. I guess I'm so used to recording numbers and food that I've never given much thought to my feelings etc.


Thank you :)
 
HayleyBumble said:
This is definitely something I will start doing. I've not thought of doing this before but will prove do be very helpful. I guess I'm so used to recording numbers and food that I've never given much thought to my feelings etc.


Thank you :)
Click to expand...

If you use a spreadsheet or notebook to record those things, you could just add to each day's entries?

I imagine on days you feel a bit rubbish, it might feel uncomfortable, but if it gives you another tool, or you spot any trends, it might be useful.

Fingers crossed for you. That feeling of knowing something has to change, but not being able to breach the loop is horrid. All these years on, I can still remember it.
 
DCUKMod said:
If you use a spreadsheet or notebook to record those things, you could just add to each day's entries?

I imagine on days you feel a bit rubbish, it might feel uncomfortable, but if it gives you another tool, or you spot any trends, it might be useful.

Fingers crossed for you. That feeling of knowing something has to change, but not being able to breach the loop is horrid. All these years on, I can still remember it.
Click to expand...
Yeah it's such hard work to be mentally battling with so much every day. That's the worst part for me.
Wanting to lose some weight because it'll be better for my health / possible pregnancy not too far in the future and figuring out the best way to do that. I know slimming groups work for me when I am 'in the zone' but also know they profit from our insecurities and I want to be able to reprogram my brain to just learn to eat in moderation and be sensible without binging and getting stuck in this vicious cycle.

Feels like it will never happen :(
Just have to keep battling through I guess
 
HayleyBumble said:
Yeah it's such hard work to be mentally battling with so much every day. That's the worst part for me.
Wanting to lose some weight because it'll be better for my health / possible pregnancy not too far in the future and figuring out the best way to do that. I know slimming groups work for me when I am 'in the zone' but also know they profit from our insecurities and I want to be able to reprogram my brain to just learn to eat in moderation and be sensible without binging and getting stuck in this vicious cycle.

Feels like it will never happen :(
Just have to keep battling through I guess
Click to expand...

Have you ever tried to have a period where you weren't trying to lose or gain weight; "just" maintain a steady state. I use the "" around the just because I do appreciate that's certainly not easy either. The yo-yo effect is a hateful situation.

When I was diagnosed T2, and I (super annoyingly for you, I know) started trimming up, by tweaking my diet a bit, I was (for quite some time, silently) terrified of getting into a yo-yo situation. I was very fortunate that my fears didn't come to pass.

I salute you for keeping trying. You'll get there.
 
DCUKMod said:
Have you ever tried to have a period where you weren't trying to lose or gain weight; "just" maintain a steady state. I use the "" around the just because I do appreciate that's certainly not easy either. The yo-yo effect is a hateful situation.

When I was diagnosed T2, and I (super annoyingly for you, I know) started trimming up, by tweaking my diet a bit, I was (for quite some time, silently) terrified of getting into a yo-yo situation. I was very fortunate that my fears didn't come to pass.

I salute you for keeping trying. You'll get there.
Click to expand...
It's funny really because it's never crossed my mind to try to just stay where I am, weight wise. I guess it's sad that I've never really thought of accepting and loving my body as it is, I'm always looking to lose some weight by Xmas, or for that wedding or whatever it may be, and of course that never happens anyway.

That's certainly food for thought isn't it! Pardon the pun!
 
HayleyBumble said:
It's funny really because it's never crossed my mind to try to just stay where I am, weight wise. I guess it's sad that I've never really thought of accepting and loving my body as it is, I'm always looking to lose some weight by Xmas, or for that wedding or whatever it may be, and of course that never happens anyway.

That's certainly food for thought isn't it! Pardon the pun!
Click to expand...

I just wondered if it might take off some pressure - even if for a while.

The thing about trying to lose weight is it's a roller coaster in it's own right. Good days,...... Hurrah! Less good days are a frustration, or a reason for us to beat ourselves up, in whatever way that happens.

Of course everyone has good and bad days, just living our lives, but sometimes we ramp it up for ourselves.

It's just a thought.
 
Im no expert but keep reaching out to people as you are with this post. Keep seeking help eg your appointment with DSN. I have a bingeing problem as well, been overweight most of my life & now prediabetic. You are right. It isn't simple, esp when suffering from depression, but kp searching for ways that can help you. For me it's meditation, exercise, gentle music, prayer.
 
I have been a diabetic for decades and we have all been there in one form or another. My daugther is type 1 too and i am powerless to see (she is 32) that she does everything to stay slim which means skipping insulin injections, throwing up when she is out with friends and over eat. And all this because society says slim is ok. I would say dont be too hard on yourself. managing diabetes is after all a roller coaster experience. I found the app carbs and cals very useful. It has all the chocolate in it, the fast food and it will tell you how much carbs youre about to eat and maybe change youre mind and then choose a less volatile option (for instance Nando's instead of McDonald). And about being overweight...feeling good is look good girl. And if certain people dont like what they see they can lump it;)
 
Hayley.

Wow. I could've wrote this. I'm a type 1 too. I am undiagnosed with an ED but reading this has made me want to ring my diabetic nurse up and cry like a baby. I cant even bring myself to talk about it to them. I've been to a doctor who told me its normal to binge, we all do it. She told me to be accountable when a binge comes along and talk about it to someone. I cant afford private therapy but i fell like what im doing is self harm. My hba1c is 11. I'm either sky high or having hypos. I'm exhausted with it. You are not alone and i will message you too xx
 
jacqfromdwed said:
Hi there

I'm sorry that you are going through this it's so hard to get help for disordered eating behaviour rather than a straight up ED like anorexia or bullimia. That having been said you do sound like you may fit the criteria for binge eating disorder and there are now specific NICE guidelines for T1s with Binge Eating Disorder including swift treatment due to increased physical health risk. If you are a dwed member we have some guidelines and material you can take in. I also might know HCPs in your area if you want to email me via the DWED website contact us section with your location x

It's really easy to blame your self for not being able to 'get a grip' but if we could have thought our way out of this then we would have, I know qualified medical doctors with eating disorders, it's no ones fault, just like getting T1.

Have you tried any treatments in the past?
Click to expand...
Hi could you please send me any info you have? I'm pretty much the same as Hayley xx
 
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