Vision loss at 42.

[Deleted member 45091]

Hi all just got back from hospital yesterday had last vitrectomy. In a nut shell docs tried there best but said there's nothing else that can be done for eye. Still having injections in the other eye. Blood pressure meds for kidney problems. It can be abit rough this diabetes can. Trying all sorts to get better control. From up to 7/8 injections a day, 12 eye drops a day and blood pressure meds for kidneys, message to others, most will get no where near the stage I am. But know you are not on your own if you are going through a rough time with your diabetes, or you have just newly been diagnosed. There are a lot of new treatments and some good new technologies out there. I thoroughly understand the feeling you get when you get the first letter saying you have changes to your vision etc and you need to come back, sometimes it can be relentless, the message is still the same, if your feeling over whelmed just take one day at a time. Try to improve things bit by bit. Understand we never asked for any of this. And we are only human at the end of the day. so for the future iam trying to concentrate on just that. I will try my best to do what I can, focus on what I do have. Iam not trying to scare people with the complications etc. Iam trying to say whatever your going through you can still focus on the positives.

 

[Jaylee]

Hi all just got back from hospital yesterday had last vitrectomy. In a nut shell docs tried there best but said there's nothing else that can be done for eye. Still having injections in the other eye. Blood pressure meds for kidney problems. It can be abit rough this diabetes can. Trying all sorts to get better control. From up to 7/8 injections a day, 12 eye drops a day and blood pressure meds for kidneys, message to others, most will get no where near the stage I am. But know you are not on your own if you are going through a rough time with your diabetes, or you have just newly been diagnosed. There are a lot of new treatments and some good new technologies out there. I thoroughly understand the feeling you get when you get the first letter saying you have changes to your vision etc and you need to come back, sometimes it can be relentless, the message is still the same, if your feeling over whelmed just take one day at a time. Try to improve things bit by bit. Understand we never asked for any of this. And we are only human at the end of the day. so for the future iam trying to concentrate on just that. I will try my best to do what I can, focus on what I do have. Iam not trying to scare people with the complications etc. Iam trying to say whatever your going through you can still focus on the positives.

Hi @DannyH ,

Thank you for your post. I hear you on staying positive we can only understand our own condition & keep batting away at it as best we know how.

You have my best wishes..

 

[Juicyj]

Best wishes Danny - it is relentless, one day at a time.

 

[JAT1]

Iam trying to say whatever your going through you can still focus on the positives.

With all that you have to go through, Danny, your positive perspective is inspiring. Thank you for posting. It's very helpful to me and I am sure for others too. Keep up the fight! We're on your side!

 

[Deleted member 45091]

Hi thanks for replies. I know there's a lot of people out there in worse situations than me. I would find the artificial pancreas useful right about now haha. It's abit of a rubbish situation, as before I've made mistakes etc and some of it may be contributing to my situation now, but I am only human too. Il keep trying to post when I can. Some really nice people on this forum. As before life has a way of making you humble. So whatever the future holds iam just going to keep trying, not beat myself up when things don't go to plan. I do not blame anyone for my situation, I don't think I am worse than anyone else, it can be scary starting out on this journey, and the stress it can cause when you don't get things right. Ive had diabetes for over 30 years and can still offer any support or encouragement to anyone that needs it. Some of the things I've had done or going through etc it may be of use to someone in the future. But above all thanks for replies I know we've not met in person but you can't underestimate sharing your experiences with others so thankyou.

 

[EllieM]

Hi thanks for replies. I know there's a lot of people out there in worse situations than me. I would find the artificial pancreas useful right about now haha. It's abit of a rubbish situation, as before I've made mistakes etc and some of it may be contributing to my situation now, but I am only human too. Il keep trying to post when I can. Some really nice people on this forum. As before life has a way of making you humble. So whatever the future holds iam just going to keep trying, not beat myself up when things don't go to plan. I do not blame anyone for my situation, I don't think I am worse than anyone else, it can be scary starting out on this journey, and the stress it can cause when you don't get things right. Ive had diabetes for over 30 years and can still offer any support or encouragement to anyone that needs it. Some of the things I've had done or going through etc it may be of use to someone in the future. But above all thanks for replies I know we've not met in person but you can't underestimate sharing your experiences with others so thankyou.

I just want to say that I find your positive outlook inspiring. Some of us get diabetic complications and some of us don't, and there does seem (to me) to be a large element of luck both in how easy your diabetes is to manage and in how past high levels of blood sugar effect your current health. So thank you for posting and I hope you are first in the line when they finally give us that artificial pancreas/diabetes cure that we've been promised is in the pipeline for the last few decades.

(And maybe in the mean time your team can give you some of the best diabetic tech? )

 

[Deleted member 45091]

Thanks Ellie, iam just glad the new tech is coming along, weather I benefit from it iam not sure, but it can only be a good thing for new diabetics, I agree complications can be a little down to luck and some diabetics do struggle more than others to get control. Some get better access to services and technology etc. But like I said before I've been far from a perfect diabetic, and some probably is catching up with me now. But we are where we are are, and I can only just keep trying one day at a time, iam seeing the diabetes team next week, so il try and keep you updated if I can. Like someone said earlier we're all on different paths in life, iam just glad met some lovely people on this forum.

 

[Jaylee]

Thanks Ellie, iam just glad the new tech is coming along, weather I benefit from it iam not sure, but it can only be a good thing for new diabetics, I agree complications can be a little down to luck and some diabetics do struggle more than others to get control. Some get better access to services and technology etc. But like I said before I've been far from a perfect diabetic, and some probably is catching up with me now. But we are where we are are, and I can only just keep trying one day at a time, iam seeing the diabetes team next week, so il try and keep you updated if I can. Like someone said earlier we're all on different paths in life, iam just glad met some lovely people on this forum.

Hi @DannyH ,

I’m older a “little” than you. I don’t claim to be perfect in my time neither. Sometimes the mistakes we’ve made are more appropriate than the assumptions from some that haven’t walked the “path.”

We worked with what was prescribed..Then tried to live a life. Tagging in @Ushthetaff . I personally respect his outlook. (With the posts.)

 

[aturi83]

Hi I’m waiting to have a vitrectomy in my left eye. Bit worried about the whole thing, my consultant told me that after 27 years of t1dm things start to happen. Youve just got to keep on going

 

[Fairygodmother]

Hi @DannyH,
I admire the way you’re facing your future. A lesson to all of us to replace the moaning with the positive.
May you find future happiness in the sounds, scents, friendships, tastes and feelings of life.

 

[Deleted member 45091]

Hi not posted in a while, thanks for the kind message. Iam just an average person, trying what I can. Not long had a big stemi heart attack. But the message is still the same, alot is out of my control, the consultant I seen the other week has accepted me for a pump and trying to get funding for the hybrid loop. She was a type one around the same age, and had diabetes just over 30 years like myself. She was fitted with a hybrid loop, bs running at 4.3, admitting she would not be able to manage her diabetes as she does without the hybrid loop and admitted she got access because of the line of work she does, I just asked her if there's any help to manage my diabetes etc would be appreciated. I told her at least the technology is starting to come through for more people especially the younger generation, Iam not really a positive person, Iam just trying to accept the things the way they are and not what I want them to be. So if I wake up in the morning and not won the lottery, il at least try and be thankful for that I've woke up, have a nice cuppa tea with a couple nice crumpets haha, take care Dan.

 

[JAT1]

I hope with all my heart that things turn to the better for you Danny. Your spirit is inspiring. I was wondering about you. Thanks for the update. We care. Many hugs.

 

[Deleted member 45091]

Thanks Jat, I know from your previous posts you have been through your own issues, so I know iam not alone going through some tough times, and that's what it's really all about, not going through things all alone, when I started having serious problems with my eye first thing I did was come on this forum, IAM not saying I totally agree with every bit of advice, but just knowing some people actually cared and tried to help was enough for me. I was with my wife over the years, but we lived separately as we found it easier. But we are now all living back together as a family. Even when I had a big heart attack recently I was crying in hospital as I couldn't breathe as lungs was filling up with fluid and heart failing, I still thought the worst time I've ever felt was some years ago when I was drinking and smoking etc. As for me I was already giving up on life and myself. And the ironic thing is the complications have caught up with me since I've quit smoking and drinking and try and eat healthier, but I still feel slightly better, as although my health isn't the best I found it worse giving up mentally on everything. As it is now, I dont blame anyone for where I am now including myself, my wife, my young lad who is 9 and family all know I gave up my habits and are at least trying abit. So who knows what time any of us have left here, IAM just glad whatever happens in the future I didn't give up on myself and that's all we can do.

 

[EllieM]

the consultant I seen the other week has accepted me for a pump and trying to get funding for the hybrid loop.

I do hope they succeed, and also that you let us know how you go with it if/when you get it. It does sound like a great piece of tech.

 

[JAT1]

But we are now all living back together as a family.

I'm super happy to hear that. Don't give up no matter what - it sets an important precedent for the kids, who of course will have their own problems as we all eventually do. Many hugs to you.

 

[Helen40]

Hi, sorry to jump in a little Kate but wondered how things are with your vision now? Your story/age/length of T1 is very similar to mine. I feel strong and resilient then get knocked back a bit, have a vent then start again, im trying!. I feel I may be reaching the vitrectomy stage and would like to know your experience of it? Hope that's not too personal so please feel free to not reply. Ps you do gave a great outlook, best of luck to you and your family

 

[IanBish]

Hi all just got back from hospital yesterday had last vitrectomy. In a nut shell docs tried there best but said there's nothing else that can be done for eye. Still having injections in the other eye. Blood pressure meds for kidney problems. It can be abit rough this diabetes can. Trying all sorts to get better control. From up to 7/8 injections a day, 12 eye drops a day and blood pressure meds for kidneys, message to others, most will get no where near the stage I am. But know you are not on your own if you are going through a rough time with your diabetes, or you have just newly been diagnosed. There are a lot of new treatments and some good new technologies out there. I thoroughly understand the feeling you get when you get the first letter saying you have changes to your vision etc and you need to come back, sometimes it can be relentless, the message is still the same, if your feeling over whelmed just take one day at a time. Try to improve things bit by bit. Understand we never asked for any of this. And we are only human at the end of the day. so for the future iam trying to concentrate on just that. I will try my best to do what I can, focus on what I do have. Iam not trying to scare people with the complications etc. Iam trying to say whatever your going through you can still focus on the positives.

Thanks for your positive message. I'm Type 2, and had a retinopathy scan fairly recently, which turned out well. I don't know how the rest of my organs are doing, mind.

I'm being a bit flippant, and I hope that you're doing okay. You're right in saying that nobody asks for this.

All the best to you.