Retinopathy panic

[Hayleyemma]

I have been to the eye clinic today and was told that I need laser treatment for retinopathy in both eyes. I am type 1 and have been for 28 years since I was 5 years old. I have had laser in my right eye about 3 years ago but here I am again. Only this time the doctor has highlighted to me that it is much more serious this time and I should be prepared to lose my driving licence. This has shocked me as he has also discussed the possibility of my retina detaching. I have always been a very worried person but I sit here tonight worrying like never before. I am also waiting to see a kidney specialist as diabetic changes to my kidneys have resulted in reduced kidney function. I have a lovely daughter but I'm a single parent and I have this awful fear that diabetes is getting the better of me and that eventually I won't be physically able to be a good mother to my daughter. I know I sound very negative but I've fought and struggled with diabetes for 28 years and to be honest I'm totally exhausted from it all. I've trawled through many many websites and forums to find any advice about how I can reduce the risk of losing my eye sight and how to help my kidneys but I don't think the answer I'm looking for is out there.
Does anyone have any advice or experience with improving the situation with my kidneys and eyes? I'm only 33 years old, I don't want to give up just yet. Any advice greatly greatly received xxx

 

[therower]

Hi @Hayleyemma. How has it got to this? You can't fight diabetes and this should have been pointed out to you long ago. Diabetes has to be embraced and utilised. Diabetes thrives on negativity, it thrives on stress, it loves the daily battles, it's biggest weapon is making you depressed. 28 yrs of this is too much, it's time to change.
The answer you're looking for isn't anywhere out there, it's in your heart and in the look of your daughter every time she looks at her mum, the one and most important person in her life now and forever.
Starting NOW is your only option, no magic words or remedies, just plain good old control of your diabetes. DSN's GP's and people her can all advise and guide you.
Whatever aspect of diabetes you are struggling with we can help.
I'm an old guy and experience has taught me that there's nothing more resilient and stronger than a mother.
Keep posting and let us help you.

 

[grandutero]

Hi, Recently I had an eye screening and was told that I had retinopathy. They want to see me in 3 months rather than the usual 6. I've been diabetic since I was 5, so 32 years. I've had background retinopathy for years. Being scared comes hand in had with diabetes I feel, as we are all only too aware of the possible outcomes. As an illness, I think diabetes (and I'm sure most others) can become as much a mental battle as a result of the physical. I've been to counselling relatively recently and I think its made me aware of how much my diabetes is 'there' in my head. I know you may be thinking "will this guys stop talking about himself?!" (and I should), but my point being is I think you should discuss this more and more with others. Who that is is up to you, but I'm only now becoming aware that there is all sort of help out there.
How well looked after do you feel? Don't feel you have to manage your diabetes alone, thats why we all pay taxes! I'm moving my diabetic support to a local hospital team as I felt I wasn't getting the support I new was out there from speaking with other diabetics, its not just about the blood tests and eye screenings, its also the nutritionists etc. I still know so little even after 32 years, and by learning more for me about food and what it does, its really made me realise some things I've been doing wrong, and in some case I've been kidding myself.

I HATE BEING DIABETIC! But I have other things to love as I know you do, (check my picky!! )

 

[noblehead]

I've trawled through many many websites and forums to find any advice about how I can reduce the risk of losing my eye sight and how to help my kidneys but I don't think the answer I'm looking for is out there.

Have you seen the following website, it has a wealth of information and advice on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

If you navigate around the above website it mentions about controlling bg, bp and cholesterol levels to help prevent diabetic retinopathy from progressing, I've suffered from retinopathy myself @Hayleyemma but have been problem-free for the last 12 years (and still hold a 3 year driving licence) so don't lose faith. Best wishes.

 

[Hayleyemma]

Hi @Hayleyemma. How has it got to this? You can't fight diabetes and this should have been pointed out to you long ago. Diabetes has to be embraced and utilised. Diabetes thrives on negativity, it thrives on stress, it loves the daily battles, it's biggest weapon is making you depressed. 28 yrs of this is too much, it's time to change.
The answer you're looking for isn't anywhere out there, it's in your heart and in the look of your daughter every time she looks at her mum, the one and most important person in her life now and forever.
Starting NOW is your only option, no magic words or remedies, just plain good old control of your diabetes. DSN's GP's and people her can all advise and guide you.
Whatever aspect of diabetes you are struggling with we can help.
I'm an old guy and experience has taught me that there's nothing more resilient and stronger than a mother.
Keep posting and let us help you.

Hi, Recently I had an eye screening and was told that I had retinopathy. They want to see me in 3 months rather than the usual 6. I've been diabetic since I was 5, so 32 years. I've had background retinopathy for years. Being scared comes hand in had with diabetes I feel, as we are all only too aware of the possible outcomes. As an illness, I think diabetes (and I'm sure most others) can become as much a mental battle as a result of the physical. I've been to counselling relatively recently and I think its made me aware of how much my diabetes is 'there' in my head. I know you may be thinking "will this guys stop talking about himself?!" (and I should), but my point being is I think you should discuss this more and more with others. Who that is is up to you, but I'm only now becoming aware that there is all sort of help out there.
How well looked after do you feel? Don't feel you have to manage your diabetes alone, thats why we all pay taxes! I'm moving my diabetic support to a local hospital team as I felt I wasn't getting the support I new was out there from speaking with other diabetics, its not just about the blood tests and eye screenings, its also the nutritionists etc. I still know so little even after 32 years, and by learning more for me about food and what it does, its really made me realise some things I've been doing wrong, and in some case I've been kidding myself.

I HATE BEING DIABETIC! But I have other things to love as I know you do, (check my picky!! )

Yes you are so right grandutero I have so much to learn about food too. I have been so strict with my food to keep tight control but sometimes I have those phases of feeling like I need to give up and forget the food and carb calculating and insulin ratios, blood tests, hospital appointments and all the complications that go hand in hand with diabetes. After all, we are only human.
I too know so little after 28 years, it is so daunting at how much there is to know now as it was relatively simple all those years ago when I was first diagnosed. I just wish that sometimes I could walk into my appointments and be told that I'm doing everything right and that I don't need to change a thing. A very unrealistic request but that's what wishes are for, right? Well I can dream anyway.
My daughter is used to me being diabetic which is a very positive thing but as she gets older the more questions she asks me about it and of course I am always so positive about it with her and explain the minimum to her with a big smile on my face. She is why I fight and I really do feel like it is a fight, if I let it get the better of me then I won't be there for her which is why I'm desperately trying to find anything that can help me prevent or delay all these complications us diabetics can suffer from.
May I ask you more about your counselling? Was this specifically geared around the diabetes? And if so where would I begin looking for that sort of help for myself? If this is something that is too personal to ask then I apologise. Or if you would prefer to message me personally with this then I would really appreciate it. I hadn't thought about the counselling option in relation to my diabetes. I am just in desperate need of some sort of support.
I don't really have any hate in my heart, but yes I do when it come to this, I HATE BEING DIABETIC TOO!!!!
I didn't realise I could add a picture on here, I have now added mine too

 

[Hayleyemma]

Have you seen the following website, it has a wealth of information and advice on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

If you navigate around the above website it mentions about controlling bg, bp and cholesterol levels to help prevent diabetic retinopathy from progressing, I've suffered from retinopathy myself @Hayleyemma but have been problem-free for the last 12 years (and still hold a 3 year driving licence) so don't lose faith. Best wishes.

Just had a quick look at this website; I have saved it to read through properly, there is so much positive information and advice for me to follow on here. Thank you so much

 

[Hayleyemma]

Hi @Hayleyemma. How has it got to this? You can't fight diabetes and this should have been pointed out to you long ago. Diabetes has to be embraced and utilised. Diabetes thrives on negativity, it thrives on stress, it loves the daily battles, it's biggest weapon is making you depressed. 28 yrs of this is too much, it's time to change.
The answer you're looking for isn't anywhere out there, it's in your heart and in the look of your daughter every time she looks at her mum, the one and most important person in her life now and forever.
Starting NOW is your only option, no magic words or remedies, just plain good old control of your diabetes. DSN's GP's and people her can all advise and guide you.
Whatever aspect of diabetes you are struggling with we can help.
I'm an old guy and experience has taught me that there's nothing more resilient and stronger than a mother.
Keep posting and let us help you.

Thank you for your lovely reply @therower I am unfortunately having what I call one of my bad diabetes days today but yes, you are right; I am a strong resilient mother, you are so right.

 

[noblehead]

Just had a quick look at this website; I have saved it to read through properly, there is so much positive information and advice for me to follow on here. Thank you so much

Feel free to share the website, it really is a great site and wish it was around when I developed retinopathy. You take care

 

[therower]

@Hayleyemma . Seek whatever help you can from whatever source, counselling, this forum, have you done a DAFNE or similar course? , specialists at your hospital or doctors, all and any advice will help at the moment. Personally I've never needed much help in dealing with day to day diabetes but fully understand how difficult it can be for some people.
Like you I've lived with this for a long time and yes it is sh*t and very few people understand how it affects us. Remember no one knows diabetes better than a diabetic.
We can only move forwards in life, what damage is done is done but you now have the chance to create your own destiny. I along with everyone else fail at times and things aren't always good but I accept the bad , change it , and move forward.
Don't hate your diabetes, that is exactly what it wants you to do. Difficult after so long but try to use it. Make it the reason you eat healthy, do that bit more exercise, go and play outside with your daughter on a rainy day. When you're at the school with your daughter and you look at all the other mums hold your head high in the knowledge that your the best mum there along with the injections, blood tests, low and high sugars and constant control.
Diabetic control is 80% emotional/ mental. 15% medicinal and 5% winging it.
I believe you can do it . You know you can do it. ( just need a bit of help and that's what the forum is here for)

 

[clareb1970]

I have been to the eye clinic today and was told that I need laser treatment for retinopathy in both eyes. I am type 1 and have been for 28 years since I was 5 years old. I have had laser in my right eye about 3 years ago but here I am again. Only this time the doctor has highlighted to me that it is much more serious this time and I should be prepared to lose my driving licence. This has shocked me as he has also discussed the possibility of my retina detaching. I have always been a very worried person but I sit here tonight worrying like never before. I am also waiting to see a kidney specialist as diabetic changes to my kidneys have resulted in reduced kidney function. I have a lovely daughter but I'm a single parent and I have this awful fear that diabetes is getting the better of me and that eventually I won't be physically able to be a good mother to my daughter. I know I sound very negative but I've fought and struggled with diabetes for 28 years and to be honest I'm totally exhausted from it all. I've trawled through many many websites and forums to find any advice about how I can reduce the risk of losing my eye sight and how to help my kidneys but I don't think the answer I'm looking for is out there.
Does anyone have any advice or experience with improving the situation with my kidneys and eyes? I'm only 33 years old, I don't want to give up just yet. Any advice greatly greatly received xxx

Hi @Hayleyemma, I was really touched by your post as I spent all my latter years as a diabetic (T1) worrying my sox off (I had a kidney/pancreas transplant in 2006). Getting diabetic retinopathy was the first indication that my diabetes was not going well. This was spotted at a routine eye check at my optitions when my first child was 1 year old. My previous eye check with the same optition just prior to getting pregnant showed nothing untoward and he actually stated that he would not have known I was diabetic as my retinas looked great. To be told of the sudden changes to my eyes whilst I was pregnant was a massive upset for me and I was immediately sent to my hospital for laser treatment.

Over the next years I was under close scrutiny by the Eye Specialist at my local hospital and occasional visited the Manchester Eye Hospital. All along, my care was second to none. I had quite a number of laser sessions, which were not exactly pleasant, but I was seen often enough to avoid anything major going unchecked.

Since having my transplant there have been no further changes to my retinas, however, I am still receiving 6 monthly eye checks at the hospital.

Diabetes is responsible for many secondary complications. I have come to realise that every diabetic is different and some may suffer very few complications whilst others moreso - despite having similar control.

My advice to you is to build up a good rapport with your diabetic consultant and the Eye specialist you see. Do not be shy about insisting on being seen more regularly and ask them to explain everything g in detail if you are frightened or confused. By doing this I was able to ring one of my Eye specialists if I had any concerns. I even went straight to A&E once and was able to see them there (I thought I'd had a small bleed in my eye, but it turned out not to be).

This website is also a fantastic place to seek advice and keep up to date with all things diabetic. The members forums are so inspiring and everyone will do what they can to help. Always remember, you are not alone. Take care

 

[dollyroger]

Hi, Susan here, I've been a diabetic since the age of 10yrs and I'm now 63 yrs, so quite a long time. I've been having laser treatment on my eyes since 1976, it saves my eyesight up until now, I 9nly see colours out of my right eye and my left eye is virtually gone, but I manage, I won't let it defeat me, one thing I would suggest which I was told I ought to do my my wonderful GP at the time and I didn't and i dontvwantbto scare you further but learn BRAILLE. I now wish I had and my eyes are now too far h9ne, as is my brain as I'm getting older. I have never been told that I might get a detached retina. First I've heard about that, but that can happen to anybody, and as far as I know the answer to that is to rest and lay flat for ages.
When I had been married for 6 months to our delight I was told I was pregnant and taken straight onto the diabetes ward where we're told the best thing we could do was to have a termination as I had Acute Renal failure, the only outcome all the consultants could see (this was 35 yrs ago ) was that both me and our baby would die. My husband and I gave this situation a lot of thought and I do mean a lot, a couple of months, it was the hardest decision ever in our married life so far, but my husband couldn't imagine a life without me and so heartbreakingly we had the termination. 10 yrs down the line I was told I didn't have acute renal failure, I was so angry because neither did I have my child, and I remain angry 35 yrs later ad my baby would now be 34 yrs old. I still take all my meds. Furosemide ( to make me wee ) Lisinopril for my blood pressure, Tildiem for my angina, Thyroxine for under active thyroid, Omeprazole I have a hiatus hernia, aspirin as I have had a stroke and a heart attack, a satin I have high cholesterol
,Gabapentin I have neuropathy in my my legs and ,t feet, I also take a tablet called Orlistat, my savior, it has helped me to lose 3 and 1/2 stone over the past 19 months which has brought my blood pressure down and the amount of tablets I take. B7t I think what I'm trying to tell you is do not let diabetes beat you, I'm still here after all these years, sure a few of the things I have wrong with me aren't anything to do diabetes they are hereditary but I am still here, bring on the tablets ill take a 1000 per day if it will keep me alive and kicking, I will never give in to this disease as long as I can fight it. So do not give in to it. FIGHT IT ALL THE WAY as we all have to do, and whatever you do do not get depressed. 8 have a happy life always I will have one regret, but ive been happily married to the man who would have been father to our child. xxx

 

[pensionistamike]

Hi Hayleyemma......I am 79 yrs old on Sunday and been Diabetic for 43 of them......without going into
too much detail suffice to say I have several "complications" which tend to appear with age.
Have a listen to the song from Carousel .....You'll Never walk Alone .....it does it for me if Im feeling "Iffy"
With the love of your daughter and the help from this site........the lyrics say it all.
God Bless you both.......and the rest of this community.

 

[Hayleyemma]

Hi @Hayleyemma, I was really touched by your post as I spent all my latter years as a diabetic (T1) worrying my sox off (I had a kidney/pancreas transplant in 2006). Getting diabetic retinopathy was the first indication that my diabetes was not going well. This was spotted at a routine eye check at my optitions when my first child was 1 year old. My previous eye check with the same optition just prior to getting pregnant showed nothing untoward and he actually stated that he would not have known I was diabetic as my retinas looked great. To be told of the sudden changes to my eyes whilst I was pregnant was a massive upset for me and I was immediately sent to my hospital for laser treatment.

Over the next years I was under close scrutiny by the Eye Specialist at my local hospital and occasional visited the Manchester Eye Hospital. All along, my care was second to none. I had quite a number of laser sessions, which were not exactly pleasant, but I was seen often enough to avoid anything major going unchecked.

Since having my transplant there have been no further changes to my retinas, however, I am still receiving 6 monthly eye checks at the hospital.

Diabetes is responsible for many secondary complications. I have come to realise that every diabetic is different and some may suffer very few complications whilst others moreso - despite having similar control.

My advice to you is to build up a good rapport with your diabetic consultant and the Eye specialist you see. Do not be shy about insisting on being seen more regularly and ask them to explain everything g in detail if you are frightened or confused. By doing this I was able to ring one of my Eye specialists if I had any concerns. I even went straight to A&E once and was able to see them there (I thought I'd had a small bleed in my eye, but it turned out not to be).

This website is also a fantastic place to seek advice and keep up to date with all things diabetic. The members forums are so inspiring and everyone will do what they can to help. Always remember, you are not alone. Take care

@clareb1970 Thank you for your message can I ask how you came to have your transplant? You put on your maessage that you had a kidney/pancreas transplant. How did this transplant come about?

 

[grandutero]

Wowwww!! Ok I'm rubbish, this is late and probably never going to get read but from my post it's obvious there's a lot of hurt and love out there in relation to diabetes. In response to Hayleyemma, (and I'm sorry Hayleyemma if you are even reading this for such a late response), but my counselling was not geared only to my diabetes. This came out after many sessions. I think it came out simply as a feeling of detachment from everyone as I'm constantly having to mentally check in on myself and work out 'am I feeling OK?' (in relation to blood sugar). I felt that that constant self analysing was giving me a sense of isolation from the rest of the world, as lets face it, who walks about worrying if they may collapse at any moment right?( I know, I needed counselling). I hope this makes sense.

Again, apologies for the late response. AWAY!!