Background retinopathy

[H_11]

Please help!!

My boyfriend who is 22 went for his yearly eye check up usually the results are good but it has came back he has background retinopathy. His sugars are never no lower than 15 they are constantly high. No matter what I do or say he does not listen. I don’t know what to do anymore. The nurses don’t care, I don’t blame them they can only help so much. I tried to get him to use a insulin pump he won’t. Can background rentinopathy go away and not get any worse. If he really starts looking after himself ????? I don’t know what to do I have tried everything to support him but he his rebelling.

 

[mikeyB]

An insulin pump won’t help if he doesn’t look after himself, you need to be motivated to use a pump.

The answer to your question is yes, background retinopathy can get worse, and eventually lead to severe visual problems and blindness. It can disappear with good control, but with BGs of 15 or over it will only get worse. As will other diabetic complications, like peripheral neuropathy, usually with pains and loss of feeling in the feet and legs, plus erectile dysfunction. And kidney failure.

Is he under consultant care? Does have any appointments at the hospital diabetes clinic? He needs specialist care to get him to change his attitude, and he will feel better for it. Otherwise he may be 22 now, but he won’t reach 40 without changing.

 

[everydayupsanddowns]

So sorry to hear about the struggles your boyfriend is having.

Do you know how long he has been living with diabetes? It can be a very difficult condition to ‘share’ with others, and it can be all too easy to push back against suggestions, offers of support, or pieces of advice (even good ones) - out of frustration, perhaps even guilt, and a sense of independence and that your diabetes is yours to deal with.

There can also be a fatigue that comes with constantly trying to manage something which wriggles and squirms, behaves illogically and contrarily, constantly changes the rules, from which there is never a day off, and which you didn’t want to be dealing with in the first place. Add to that a sense of being worn down, and that ‘this is as good as it gets’ and it can be quite difficult to summon the energy and enthusiasm to have yet another go.

But constantly elevated numbers do feel like they need some attention. And any small improvements to reduce glucose variability and glucose instability (the differences between highs and lows, and how fast he wobbles up and down from one to the other) can make a huge positive difference.

Background changes in the eyes can be slowed or in some cases reversed (I have had them in the past, but don’t now)

There are lots of resources on the Diabetes UK website, recommendations of books, or courses to attend, and the support and encouragement of the forum - but he has to believe change is possible, and want to make that change happen.

Hope he manages to find a way to engage with his diabetes in a different way.

 

[H_11]

An insulin pump won’t help if he doesn’t look after himself, you need to be motivated to use a pump.

The answer to your question is yes, background retinopathy can get worse, and eventually lead to severe visual problems and blindness. It can disappear with good control, but with BGs of 15 or over it will only get worse. As will other diabetic complications, like peripheral neuropathy, usually with pains and loss of feeling in the feet and legs, plus erectile dysfunction. And kidney failure.

Is he under consultant care? Does have any appointments at the hospital diabetes clinic? He needs specialist care to get him to change his attitude, and he will feel better for it. Otherwise he may be 22 now, but he won’t reach 40 without changing.

Hi,

Thank you for replying.

Yes he is under consultant care, they don’t ever really say much just that he needs to speak with dietician about carb counting as he does not know how to give himself the correct amount of insulin but they only soeak to him over the phone he needs an appointment to sit down with someone and create a plan. He is all over the place and has his priorities all wrong work comes first so does family he does not care about himself it is so hard to watch him go through this I wish I could have this instead of him. I really do!!

I am going to try and speak with one of the nurses today. I left so many messages yesterday and all this morning trying to speak with one of them but they never ever ring back He needs an appointment asap to get support and advice.

Thank you for your help and advice x

 

[H_11]

So sorry to hear about the struggles your boyfriend is having.

Do you know how long he has been living with diabetes? It can be a very difficult condition to ‘share’ with others, and it can be all too easy to push back against suggestions, offers of support, or pieces of advice (even good ones) - out of frustration, perhaps even guilt, and a sense of independence and that your diabetes is yours to deal with.

There can also be a fatigue that comes with constantly trying to manage something which wriggles and squirms, behaves illogically and contrarily, constantly changes the rules, from which there is never a day off, and which you didn’t want to be dealing with in the first place. Add to that a sense of being worn down, and that ‘this is as good as it gets’ and it can be quite difficult to summon the energy and enthusiasm to have yet another go.

But constantly elevated numbers do feel like they need some attention. And any small improvements to reduce glucose variability and glucose instability (the differences between highs and lows, and how fast he wobbles up and down from one to the other) can make a huge positive difference.

Background changes in the eyes can be slowed or in some cases reversed (I have had them in the past, but don’t now)

There are lots of resources on the Diabetes UK website, recommendations of books, or courses to attend, and the support and encouragement of the forum - but he has to believe change is possible, and want to make that change happen.

Hope he manages to find a way to engage with his diabetes in a different way.

Thank you for your kind words.

I read him your reply, and he said that is the perfect explanation to how I feel. So thank you for that, first time he’s actually said something like that. I have showed him this forum and I think he may actually consider joining it may help to speak to people with diabetes to. I just pray this is the wake up call he needs. I am so worried though as lastnight I was reading through the forum and I read it can be dangerous and cause complications if he brings his sugars down to quickly. For example his sugars range from 15 to 28 sometimes they will say HI so high they can’t give a reading. All day yesterday he managed to keep them between 5.8 - 11.7. He said he felt like he was having a hypo but I explained his body is soo used to running on extremely high sugars he will feel this way.
But I can’t get ahold of the nurses to get advice it’s Just a nightmare.

Thanks

 

[Leadinglights]

Thank you for your kind words.

I read him your reply, and he said that is the perfect explanation to how I feel. So thank you for that, first time he’s actually said something like that. I have showed him this forum and I think he may actually consider joining it may help to speak to people with diabetes to. I just pray this is the wake up call he needs. I am so worried though as lastnight I was reading through the forum and I read it can be dangerous and cause complications if he brings his sugars down to quickly. For example his sugars range from 15 to 28 sometimes they will say HI so high they can’t give a reading. All day yesterday he managed to keep them between 5.8 - 11.7. He said he felt like he was having a hypo but I explained his body is soo used to running on extremely high sugars he will feel this way.
But I can’t get ahold of the nurses to get advice it’s Just a nightmare.

Thanks

Unless you are listed as an 'official' carer the nurses may be constrained by policy of the practice on patient confidentiality so may feel they cannot discuss with you the issues of your partner without his agreement.

 

[H_11]

Unless you are listed as an 'official' carer the nurses may be constrained by policy of the practice on patient confidentiality so may feel they cannot discuss with you the issues of your partner without his agreement.

They usually do talk to me they know I’m the only one keeping him alive so I don’t actually have a hard time discussing things with them. It is getting ahold of them that is a nightmare I must have left about 20 messages they don’t get back to you it’s really strange even when there have been emergencies they take their time. So ODD !!

 

[Proud to be erratic]

They usually do talk to me they know I’m the only one keeping him alive so I don’t actually have a hard time discussing things with them. It is getting ahold of them that is a nightmare I must have left about 20 messages they don’t get back to you it’s really strange even when there have been emergencies they take their time. So ODD !!

Yes, at first glance it does seem odd. But we live in a changing world and because we do so much by phone or messaging and so little face to face - people's circumstances change and we don't get the F2F interaction to allow us to become aware of those changes.

So perhaps the people who did usually talk to you have been moved to somewhere else, or received a nudge about breaching patient confidentiality, or ..... who knows. Anyway, you aren't getting the hints you might otherwise have got when F2F and they can't tell you in writing about the subtly changing relationship. Managing expectations has definitely become more difficult in these days of remote communications.

All that said, I hope your boyfriend does pick up on the help and support you are giving him and finds a motivation to look after himself more. Good luck.

 

[everydayupsanddowns]

Ah that’s great to hear he may consider joining the forum!

There are no ‘perfect’ people with diabetes. We are all just muddling along, making mistakes, trying things out, supporting each other, and aiming for slightly better quality of life with diabetes along for the ride.

If you’d like some background on up to date insulin management you might find the books

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - don't be worried by the title - this book is great for adults too

Or

Think Like a Pancreas by Gary Scheiner

Very helpful. They are clearly written in understandable ways without too much medical jargon.

There was also this thread of people’s top tips looking back over past discoveries and things they wish they had found out sooner

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

 

[H_11]

Yes, at first glance it does seem odd. But we live in a changing world and because we do so much by phone or messaging and so little face to face - people's circumstances change and we don't get the F2F interaction to allow us to become aware of those changes.

So perhaps the people who did usually talk to you have been moved to somewhere else, or received a nudge about breaching patient confidentiality, or ..... who knows. Anyway, you aren't getting the hints you might otherwise have got when F2F and they can't tell you in writing about the subtly changing relationship. Managing expectations has definitely become more difficult in these days of remote communications.

All that said, I hope your boyfriend does pick up on the help and support you are giving him and finds a motivation to look after himself more. Good luck.

Yes you are so right. Thank you for your kindness xx

 

[H_11]

Ah that’s great to hear he may consider joining the forum!

There are no ‘perfect’ people with diabetes. We are all just muddling along, making mistakes, trying things out, supporting each other, and aiming for slightly better quality of life with diabetes along for the ride.

If you’d like some background on up to date insulin management you might find the books

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - don't be worried by the title - this book is great for adults too

Or

Think Like a Pancreas by Gary Scheiner

Very helpful. They are clearly written in understandable ways without too much medical jargon.

There was also this thread of people’s top tips looking back over past discoveries and things they wish they had found out sooner

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

Ah brilliant! Thank you so much for your suggestions I will definitely order these and have a read myself and try and get him to read!

Thanks again !
Heather

 

[sg295]

Please help!!

My boyfriend who is 22 went for his yearly eye check up usually the results are good but it has came back he has background retinopathy. His sugars are never no lower than 15 they are constantly high. No matter what I do or say he does not listen. I don’t know what to do anymore. The nurses don’t care, I don’t blame them they can only help so much. I tried to get him to use a insulin pump he won’t. Can background rentinopathy go away and not get any worse. If he really starts looking after himself ????? I don’t know what to do I have tried everything to support him but he his rebelling.

Hi,

So sorry to hear of the struggles you two are having.

I was diagnosed with type 1 last year at 22 years old so I understand how it feels to be a young person with type 1 and trust me, it can be hard sometimes!

Just letting you know that if either of you want to message to chat about anything you’re more than welcome. Here to help 🙂

 

[H_11]

Hi,

So sorry to hear of the struggles you two are having.

I was diagnosed with type 1 last year at 22 years old so I understand how it feels to be a young person with type 1 and trust me, it can be hard sometimes!

Just letting you know that if either of you want to message to chat about anything you’re more than welcome. Here to help 🙂

Ah I am so sorry to hear this, I hope you are doing well. And thank you so much I really appreciate that. Lovely to see you on here as it can really help talking to others can’t it.

🙂 x

 

[sg295]

Ah I am so sorry to hear this, I hope you are doing well. And thank you so much I really appreciate that. Lovely to see you on here as it can really help talking to others can’t it.

🙂 x

No worries, yes pretty good thank you! I’m finding physically managing my levels is going pretty well, it’s more the emotional impact it’s had that’s been tough to deal with but I feel like I’m getting there 🙂

Joining this forum has honestly been one of the best things I’ve done to help myself. You get so much information, advice and support from others who understand exactly what you’re going through and feel less alone. If your bf is up for joining I would deffo recommend!

Take good care of yourself and anytime you need any advice or support please don’t hesitate to ask 🙂 x

 

[Leadinglights]

It may help him to know that there are quite a few young people on the forum who would be on the same wavelength when it comes to dealing with their condition, not just old fuddy-duddies though they have a wealth of experience to tap into.

 

[H_11]

No worries, yes pretty good thank you! I’m finding physically managing my levels is going pretty well, it’s more the emotional impact it’s had that’s been tough to deal with but I feel like I’m getting there 🙂

Joining this forum has honestly been one of the best things I’ve done to help myself. You get so much information, advice and support from others who understand exactly what you’re going through and feel less alone. If your bf is up for joining I would deffo recommend!

Take good care of yourself and anytime you need any advice or support please don’t hesitate to ask 🙂 x

So glad to hear that! Thanks again, take care speak soon 🙂 xx