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Avawilliam1

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Just a quick question please because I'm upset and I can't get my head around this. My daughter is 30 and the most wonderful person in the world and has had diabetes since the age of 12. She didn't handle it very well for years and continued on with her life and just wanted to be like all her friends as a teenager which is understandable, she didn't look after herself and wouldn't be told. Now she's thirty and the complications are setting in big time. She has just recently got a libre in her arm and she's trying so hard to get it right although she is a little overweight. The thing is, she's had her eyes lazored countless times and since having the libre she's been staying mostly within range but today at the hospital they told her that now both her eyes are bleeding again. We are absolutely gutted. She suffers with terrible anxiety and I hate to see her stressed, worn out and worried about this. All the time I had been saying to her 'see, now you're looking after yourself everything will be better, everything will be fine' and now today, more bad news...I'm worried she's going to get extremely depressed, she already just sits alone in her home in the cold, no work, no hobbies because she has bad fingers piling on the weight. I feel so desperately sorry for her as she's my daughter and I can't change a thing so please, sorry for the rant, can anyone explain how, if her blood sugars are now controlled why her eyes are bleeding again because it absolutely does not make any sense to me? Sorry for the long post.
 
Hi @Avawilliam1
I’m so sorry to hear the complications your daughter is having , I know from personal experience how frightening it is with proliferative retinopathy & retinal bleeds.

If glucose levels are reduced too rapidly it can increase the progression of proliferative retinopathy. It is perverse when you’re doing everything you can to be ok but sadly true. That may explain why your daughters retinopathy has kept on progressing despite improved levels.

There is so much that can be done now with eye injections & laser, nobody wants any of it but it can be very efficient at maintaining sight. All the good effort your daughter is putting in will help her but the retinopathy can be a bit of a rollercoaster to slow down.

Keep encouraging her to use the data from the Libre and every day of improved levels should help things stabilise.
 
I’m sending you massive hugs. Along with my diabetes I also have 4 children, each with medical needs that impact their lives by varying degrees. It’s horrible when they are suffering and you feel helpless. They say you are only ever as happy as your unhappiest child and it’s so true ! I’m sure you will get lots of practical advice as this forum is full of the most wonderful, helpful and knowledgeable people who dedicate vast amounts of time helping people like you and I. I just wanted to say from a personal level, I know what your going through and it sucks, we can’t take it away from them, but we can support and care for them when they needs us and that’s exactly what your doing, just by being here xx
 
Also, sending (((HUGS))) to your both. Would you be able to encourage your daughter to join the forum herself? Being part of a community which understands the challenges of living with diabetes and can offer understanding and support and practical tips for managing things better is a huge benefit and one that has kept me afloat mentally since my diagnosis.

I would agree with @Flower that perhaps your daughter has dropped her levels back into range a bit too quickly and that has resulted in further bleeds. If she can now maintain her levels mostly in range her eyes should stabilize and possibly even start to improve a bit. Unfortunately this issue is something that we are aware of on the forum but isn't well discussed or known by some health care professionals. The eyes are very vulnerable to significant changes in BG/HbA1c as well as high levels, so bringing things down slowly and steadily and then maintaining stability is best for them.
Hopefully now she has Libre, that will help her to manage things better, but coming here to the forum and comparing notes with others can be great at making you feel less alone with it and more normal. I would also recommend an in person DAFNE course or whatever your local equivalent is. It is an intensive education course which tends to be offered to adults from 6 months after diagnosis but I think many people who are diagnosed as children slip through the net as regards being referred onto it because by the time they reach adulthood, they have already been managing their diabetes for quite a few years. There was a lady on my course who had been diagnosed 50 years and it was probably more beneficial to her than any of us because she had been suffering frequent and very debilitating hypos often involving paramedics for much of her adult life and her children had grown up witnessing it and sometimes having to assist, which is a big strain to put on your children, but the lady just assumed it was part of having diabetes. It isn't until you meet others and share experiences that you come to understand things better and perhaps learn that it isn't normal and there are things that can be done to prevent it. For me one of the huge benefits of the course was spending a week with other Type 1s, learning from them and just feeling normal at lunchtime when we all sat down and carb counted and injected our insulin together. It really was quite liberating and bonding. The courses are usually limited to about 6-10 people so it isn't an intimidatingly large group of people and the course educators are usually the very highest qualified DSNs and diabetes dieticians who are specifically selected to be non judgmental, as the idea of the course is to help people keep themselves safe (and out of hospital) in all manner of real life situations, including using drugs and alcohol and eating disorders etc, as well as pregnancy and exercise and managing diabetes through illness. The educators also have reps come to discus the latest tech which is available and they often have the ear of the local consultant and are prepared to advocate on your behalf if they feel that there is something (change of insulin or tech like a pump) which they feel will benefit you as an individual. I personally no longer follow most of the principles of the course because I follow a l;ow carb way of eating, but I still highly rate the course and feel it would be beneficial for your daughter, particularly if she is feeling isolated and vulnerable as a result of her diabetes. It gave me a lot of confidence to make better decisions about my diabetes management.
 
Can I say thank you so much for the lovely response, it really means a lot to me. I will definitely pass on the information about the DAFNE course and will definitely suggest a low carb diet, she did go on a keto diet last year and was losing loads of weight and getting dead happy about it all and I could really see the joy returning in her eyes and then it all went terribly down hill when she got a kidney infection and ended up in hospital and the Dr shouted at her saying having ketones in the blood was not acceptable for a diabetic and it would affect her heart so when she came out of hospital she was very disheartened and the weight gain has come along again. I try to remain positive for her but sometimes I think she just assumes I don't know how difficult it is for her to just keep getting up and starting over. I really do take my hat off to everyone dealing with this condition, and thank you for your very kind responses and giving me the answer to my question. I will ask her to join the forum but she has trouble with her fingers locking when she types and it's painful xxx
 
Sorry to hear what a tough time your daughter has been having with her diabetes @Avawilliam1

And to get additional progression when she has worked so hard at improving things must be a real kicker.

I really hope the latest changes are transient (as they can be when caused by rapid changes in levels) and improve and stabilise as her levels settle in the improved zone.

Very best wishes to you both. And hope she feels able to join the forum (posts can be very short!). Maybe use the dictation feature on a smartphone?

There is something very powerful about being able to vent and rant about the frustrations of life with diabetes among people who are walking the same path. And it’s great to be able to pick up practical hints, tips, and ideas too.
 
I wonder if it might give you a little bit of hope to read a post from another member who has just posted, where they have had background retinopathy for the best part of a decade but their latest test has just come through clear, so improvement is possible even after long term changes. As mike says above, will keep fingers crossed that this latest deterioration is transient.
This is the thread I mentioned above...
 
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