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Hi, new to the site but not to T1. Really struggling atm

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Charlotte7

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Relationship to Diabetes
Type 1
Hi, can anyone point me in the direction of some help please? I'm sick of being sick. I've never had stable sugars and have had a binge eating disorder for 7+ years now and I'm utterly miserable and really scared. x
 
Hi and welcome to the forum 🙂

Do you have a diabetes team you could chat to about what your going through? I suffered a fear of carbs and an eating disorder not long after I was diagnosed and my team referred me to a psychiatrist, unfortunately I was on the waiting list for a year and I couldn't take the appointments after my first one as I just couldn't make the 6 hour round trip every fortnight but help is available
xx
 
Hi, I have told the diabetes team but keep getting appointments cancelled. I'm sorry you've had a bad time x
 
Any reason as to why the appointments are being cancelled? I'd call them asap and demand to be seen and tell them that your concerned at the lack of care you are receiving and you will take the matter further if things don't improve, you'd be well within your rights, ah thanks I've had a really rough time in my almost 3 years with eye problems arising less than a month after I was diagnosed Type 1 as well but hey I'm still here
xx
 
There's only 1 consultant and she cancels a lot and the nurses don't communicate. I moved areas and this team really isn't good. Your hba1c is good! Mine's been 100+ for 10 years
 
Charlotte7 said:
There's only 1 consultant and she cancels a lot and the nurses don't communicate. I moved areas and this team really isn't good. Your hba1c is good! Mine's been 100+ for 10 years
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well if you contact them and they don't see you I really would suggest taking the matter further as you are entitled to that care, thanks but hba1c doesn't really matter seen as I've had 2 different eye conditions and haven't even been diagnosed 3 years yet lol, I'm very strict with what I eat and stick to around 100g carbs (unless I hypo of course) xx
 
Hello @Charlotte7 and welcome 🙂 I'm sorry you are having a tough time.

There is an excellent organisation who you can contact for help DWED (diabetics with eating disorders) link here http://dwed.org.uk/ or alternatively talk to the diabetes uk helpline and they will be able to advise you how to get help https://www.diabetes.org.uk/how_we_help/helpline.

I lived with diabulimia for years, manipulating insulin with a really bad relationship with food. It all takes its toll mentally and physically. Being sick of being sick is a good description. Eating disorders are not uncommon with T1 diabetes and help is out there - it may take some persistence to get the correct help but keep at it because you deserve to feel happy and healthy.

Diabulimia covers a whole range of physical and mental issues we can face, binge eating, manipulating insulin, limiting food intake etc here's a bit of information from the Diabetes UK site

How diabulimia develops
There are lots of reasons diabulimia may develop. It’s often not just down to one thing – it might be a combination of physical, social and mental health problems. When you have Type 1, the things you need to do to manage it can play a part in setting off diabulimia, like:

  • having to carefully read food labels
  • the focus on your weight when you go to the clinic
  • having to eat to treat hypos, which can cause weight gain and guilt
  • being constantly aware of carbohydrates or calories in food
  • feeling shame over how you manage your diabetes
  • a bad relationship with your healthcare team
  • difficulty keeping to a healthy weight.
How common is diabulimia?
The term diabulimia may not be well known – but it is a serious problem.

But we don’t know exactly how many people are living with it. It’s estimated around 4 out of 10 women, aged 15 to 30, take less insulin to lose weight. And for young men, it’s around 1 out of 10. Research shows men with diabetes are more worried about their weight than men who don’t have diabetes.

Please contact your DSN or GP and ask for some help to start to get you to a better place. They will have heard it before, you are not the only one feeling like this. Best Wishes.
 
Hello Charlotte welcome to the forum. Hmmm 500 grams of carbs a day, I have less than 100gms per day but there is no right amount for all of us. I agree with the others you need specialist help, please speak with DUK on 0345 1232 399, they are there for you and will advise you how to contact your HCP (Health Care Professional) and how too discuss your concerns with them. You can also do it through the website but I in my opinion feel you need to talk on a one to one basis with a human being. Please take care and come back and let us know how you are coping.xx
 
Hi @Charlotte7 and sorry to hear what you're going through. NHS diabetes care does seem to be a bit of a postcode lottery, but some type 1s can manage with minimal support and others can't, and it sounds as though your team should be prioritising you and aren't. Diabetes UK might be able to advise you, as Karnak suggests, and another thing you could try is to contact PALS (Patient Advice and Liaison Service) and ask them to talk to your diabetes clinic on your behalf and make sure you get an appointment with a Diabetes Specialist Nurse - you can find your local one here - https://www.nhs.uk/Service-Search/Patient advice and liaison services (PALS)/LocationSearch/363
 
Hi, I've just logged back on and read your replies. Thank you so much, you said some really helpful things. I've asked for a self referral form to be sent out today for specialist counselling for this problem so hopefully I'll get help soon. x
 
Morning @Charlotte7

Good to hear that you are sorting out a self referral form.
Keep seeking help and keep in touch.
 
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