After some support

[eloise]

Hello

I've just joined the site today and after a little help. I couldn't see a relevant forum area to post in so thought I would start here. If I need to redirect my thread somewhere else though please let me know and I will 🙂

My husband is 27 and was diagnosed with type 1 diabetes at 16 years old. I feel that he still has trouble accepting the condition (understandably) and this gets in the way of him managing it to his best capability.

I feel as though things are getting out of control and I am so scared. I didn't realise how debilitating and dangerous diabetes can be until I met him and I try to do everything I can to support him.

He is very into exercise and goes to the gym and martial arts lessons several times a week. This is really positive for him, but as I'm sure most will know, can play havoc with managing his sugars.

He also works in a very stressful job which often sees him go for prolonged periods of time without food. The heightened stress levels also have an effect on his sugars. I have tried to sensitively talk to him about speaking to his employers about more support there, etc but again, he becomes resistant as he doesn't want to be seen as different to other people.

Another difficulty is that, since I have known him, he has used food as a coping strategy to manage negative feelings such as anxiety, sadness and stress. We have tried together to come up with alternative ways of coping but he often falls back into sweets and high fat foods. I feel like a nagging wife when I try to encourage alternatives or persuade him not to finish a whole bag of whatever because I empathise with how tough things are for him but I also want him to be as healthy as he can be.

My heart aches for him and writing all this down is so painful. We are expecting our first child now and I am so worried that I will lose him.

His GP has never been particularly supportive - the nurse he sees there for his diabetes check ups is rather judgmental and doesn't seem to have any empathy for context or any ways of offering him more support. She seems to just scold him for his lack of managing his condition.

I'm sorry this is such a lengthy post. I am at my wits end and don't know where to turn to. I wondered if anyone knew of how to access diabetes specialists or any other support I can help him access?

Thank you so much if you have read this far!

Eloise

 

[Northerner]

Hi Eloise, welcome to the forum 🙂 I can fully understand your concerns. Your husband was diagnosed at a very difficult age, and often one of the biggest problems that people experience is a poor transition to adult care. If he is under the care of his GP surgery then unless the GP is exceptional (and that does not sound like it is the case) it is unlikely they will have the skills and knowledge in order to provide the proper level of support and knowledge for him. He should ask his GP for a referral to a consultant-led clinic, because the surgery are unable to provide the required level of care for his needs, as illustrated by the problems he encounters.

It might also be helpful, if he has not already done so, to request access to a Type 1 diabetes education course. He may feel that, after a decade of living with it, he knows what he needs to do, but there is an awful lot to be said for being brought right up to date with the latest thinking, and also to meet others in the same boat. Diabetes can be a very isolating condition, because it is really difficult (if not impossible) for those without it to understand what in entails. Many people with diabetes are therefore resistant to non-diabetic people trying to help, however well-intentioned and sincere it is (and I have no doubt you are really trying your best to be helpful, and diplomatic at the same time!). Meeting other diabetics and seeing/sharing problems can really help.

Contacting the Diabetes Careline service might help if you are unsre about getting him referred to a specialist:

http://www.diabetes.org.uk/How_we_help/Careline/

Regarding exercise, it might be worth him looking at the website 'Runsweet':

http://www.runsweet.com/

Lots of information about managing exercise and Type 1! 🙂

Also, it might be worth getting a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas, which is a really excellent and comprehensive book covering all aspects of Type 1, just browsing through it can often raise issues and solutions previously unconsidered 🙂

Please feel free to ask any questions you may have, here or on the General section, and we will be more than happy to help where we can 🙂

 

[HOBIE]

Hi Eloise, Stress always does me in too. I too don't like to think I am different to anybody else & would run as fast as any other kid in school 😱 Have a look at Freestyle Libra cos very good in this type of thing. £130 for starter pack & the info you get is very reassuring. Good luck & keep asking 😉

 

[Copepod]

Welcome to the forum, Eloise and congratulations on your pregancy.

Is your husband able to get to ante natal classes with you? Or does his work pattern make that difficult? While it can be difficult getting time off work for appointments and education, whether for pregnancy, childbirth or diabetes, it's worth it for GOOD appointments. It doesn't sound like he's getting much value, if any, from his GP / practice nurse appointments, so asking for referral to make a new start with hospital clinic would seem to be a very good strategy. He'll still have to get his prescriptions via GP, and he may find it easier to get his blood samples taken, blood pressure recorded etc at GP surgery, but he should get more useful guidance etc, with a degree of understanding, from doctors, nurses, podiatrists, dieticians, psychologists etc at hospital clinic - usually a single referral to clinic opens up lines of communications with all types of health care professionals [HCPs].

 

[AJLang]

Hi Eloise welcome to the forum and congratulations on your pregnancy. I have been in the position of having a stressful job and not eating properly. However I didn't have the tools for diabetes that I have now. My suggestion would be that your husband takes relatively small steps to begin with. If he is on multiple daily injections, the basal level is right and he carb counts he can eat, or not eat, when he wants as long as he balances this with relevant insulin and, when appropriate, corrects hypos. As Hobie suggests the Freestyle Libre is very helpful. I would strongly suggests that your husband asks to be referred to the hospital's diabetic clinic and also gets onto a DAFNE course. Please ask us any questions that you have.

 

[eloise]

Hello again

Thank you so much for all the help and advice! I have passed on some of the links to my husband and hoping he will have a look.

He has agreed that we should go and request a referral from the GP to a consultant led clinnic so that is on the list to do this week 🙂

Copepod - thank you for asking, he is able to attend our antenatal appointments. He has lots of motivation to make time for those. I think he just always puts his diabetes care last - it feels like he is still in denial from being a 16 year old - it's as if he doesn't address it, it will go away. I wish wish wish that would happen!

AJLang - thanks for your advice. He did attend a DAFNE course around 2 and a half years ago. He found it really helpful and it really boosted his confidence meeting other people with diabetes. For a few weeks he was really motivated to stay on top of his carb counting and testing his bloods but it dwindled away again.