Struggling to cope with type 1 diabetes

[Becks33]

Hi all,

I have had diabetes nearly 15 years and for years I just ignored the condition almost in denial , I am now 23 nearly 24 and been diagnosed with proliferative diabetic retinopathy, which has destroyed my life , I have had my driving liscence taken off me and lost my job and having to have so much laser surgery on my eyes and eye injections every month I feel disabled with the condition and struggle to see myself every living a happy content life with no problems - is anyone else feeling this way? I just don’t seem to do much with my life now I’m to scared to go out the door with how vundrable I feel with the diabetes and living a normal life , I’ve been told I could go blind if I don’t take control but I seem to loose control all of the time - can anyone else relate to this or share what helps them?

Thank you

 

[JAT1]

Now that you are older, wiser and have seen for yourself the consequences of poor diabetes management, you will get your blood sugar under control provided you make the choice to do so. I understand that if you keep the sugar levels in range and fairly consistent, consequences can self-heal.

 

[Juicyj]

Hello and welcome @Becks33

Sorry to hear of your issues with complications, have you ever been given much guidance with your diabetes management ? And why do you think you are losing control all the time ?

If we can help in any way and you are able to get back on track then some of the damage can reversed, Dr Bernstein is type 1 and in his 80's and reversed most of his and lives a healthy life. It's never too late but the need and desire is down to you.

 

[michita]

You are so young and it’s heart breaking to hear you are having so much problems managing. Have you asked for Libre ? And try if a lower carb diet would help. Complications can be reversed. You can do it. Hugs x

 

[kevinfitzgerald]

So sorry to hear of your situation but you state you were told you "could go blind" if you do not take control. By this I would think you wont if you do start taking control and responsibility for your condition.

Diabetes is a chronic illness but it is one of the few chronic illnesses out there where the person can reverse complications or at least stop them from getting any worse.

Be responsible and change because if you don't at some stage the damage to your eyes will reach the point of no return.

Stay close to the forum and take on board all the experience and guidance which is offered. The balls in your court now. Be motivated and committed and things will hopefully improve...

 

[endocrinegremlin]

Now that you are older, wiser and have seen for yourself the consequences of poor diabetes management, you will get your blood sugar under control provided you make the choice to do so. I understand that if you keep the sugar levels in range and fairly consistent, consequences can self-heal.

This in no way helps them. All it does is make them feel guilty. No help whatsoever. There is that saying of if you don't have anything nice to say!

 

[endocrinegremlin]

Hi all,

I have had diabetes nearly 15 years and for years I just ignored the condition almost in denial , I am now 23 nearly 24 and been diagnosed with proliferative diabetic retinopathy, which has destroyed my life , I have had my driving liscence taken off me and lost my job and having to have so much laser surgery on my eyes and eye injections every month I feel disabled with the condition and struggle to see myself every living a happy content life with no problems - is anyone else feeling this way? I just don’t seem to do much with my life now I’m to scared to go out the door with how vundrable I feel with the diabetes and living a normal life , I’ve been told I could go blind if I don’t take control but I seem to loose control all of the time - can anyone else relate to this or share what helps them?

Thank you

You are doing brilliant for reaching out here. There are also communities on fb, instagram and twitter if those platforms are more your thing. The first step is asking for help with any problem!

I've been in the position of not wanting to leave my house because of diabetes. Injections didn't work for me any more. I'd go hyper or hypo at any moment. In time I was granted an insulin pump and also got a dog (he's in the pic). I had to walk him at least around the block so off I trotted. Nearby though. In my comfort zone.

You can build yourself up too. Firstly, reach out to your DSN. They should never judge but always help! Take small steps. Have you been offered a libre monitor or an insulin pump? Do you think you would want one of those? They may help. They may not be for you. Jobs are still available, no matter your eye-site. One day you may get to drive again. Before that, have you looked into bus passes or train passes? You might be able to get free or discounted travel to help you get out and about. Perhaps in the interim your mates might visit you. Keep your spirit up, that sort of thing.

It is one day at a time. You CAN do this.

 

[Becks33]

Hello and welcome @Becks33

Sorry to hear of your issues with complications, have you ever been given much guidance with your diabetes management ? And why do you think you are losing control all the time ?

If we can help in any way and you are able to get back on track then some of the damage can reversed, Dr Bernstein is type 1 and in his 80's and reversed most of his and lives a healthy life. It's never too late but the need and desire is down to you.

You are doing brilliant for reaching out here. There are also communities on fb, instagram and twitter if those platforms are more your thing. The first step is asking for help with any problem!

I've been in the position of not wanting to leave my house because of diabetes. Injections didn't work for me any more. I'd go hyper or hypo at any moment. In time I was granted an insulin pump and also got a dog (he's in the pic). I had to walk him at least around the block so off I trotted. Nearby though. In my comfort zone.

You can build yourself up too. Firstly, reach out to your DSN. They should never judge but always help! Take small steps. Have you been offered a libre monitor or an insulin pump? Do you think you would want one of those? They may help. They may not be for you. Jobs are still available, no matter your eye-site. One day you may get to drive again. Before that, have you looked into bus passes or train passes? You might be able to get free or discounted travel to help you get out and about. Perhaps in the interim your mates might visit you. Keep your spirit up, that sort of thing.

It is one day at a time. You CAN do this.

 

[Jaylee]

Hi all,

I have had diabetes nearly 15 years and for years I just ignored the condition almost in denial , I am now 23 nearly 24 and been diagnosed with proliferative diabetic retinopathy, which has destroyed my life , I have had my driving liscence taken off me and lost my job and having to have so much laser surgery on my eyes and eye injections every month I feel disabled with the condition and struggle to see myself every living a happy content life with no problems - is anyone else feeling this way? I just don’t seem to do much with my life now I’m to scared to go out the door with how vundrable I feel with the diabetes and living a normal life , I’ve been told I could go blind if I don’t take control but I seem to loose control all of the time - can anyone else relate to this or share what helps them?

Thank you

Hi @Becks33 ,

Welcome to the forum.

I was wild & reckless in my youth.. Ironically, got away with any diagnosis of retinopathy. But there are now newer developments in detecting any issues.
Oddly, just after I cleaned up my act. A little too quickly. I was diagnosed with a macula edema which involved injections.
I realize now I tweaked my BGs & A1c a little too fast. & have a tentative relationship with DVLA. My advice whilst sorting your Aic? Slowly like a decompression..

Yep, a bit of a kick in the teeth. However. Tell us a little more about yourself.

I'm going to tag in @Knikki a long termer who may have his own thoughts..
Also, @himtoo .

You have my best regards.

 

[Circuspony]

Have you got a supportive diabetes team? Trial of a Libre might give you that support you need to kick start looking after yourself again x

 

[Becks33]

Hi

Thank you so much for your reply , I have been told the pump would make my life a lot harder and they will not offer me anything else but injections and finger prick.

Sometimes I feel like my diabetes team get angry with me which is difficult I’m going through a lot of surgery on my eyes at the moment and I’m going to counselling aswell.

I’m just afraid of things like going out for meals or even on holidays or traveling or out for a few beers I’m even afraid of going to the gym at this rate , I haven’t enough education so I’m attending a course for carb counting I’ve reached out for help so many times and seem to end up loosing everything the condition is exhausting me mentally and physically at the moment I can barley see out of my left eye and waiting for surgery on that one! I’m just exhausted and wanted to reach out and see if I’m the only one and what other people do to over come this and move on.

Thank you for your reply though Is your diabetes well managed yourself?

 

[Robinredbreast]

Aawww @Becks33 so sorry to read of your diabetes problems, it's hard at times. You have made a big step forward by reaching out to other type 1's on the forum. I hope you can turn things around,

No one can go back and make a brand new start. But anyone can start from now and make a brand new ending.
Just take small steps, you can do it

 

[Becks33]

Hi @Becks33 ,

Welcome to the forum.

I was wild & reckless in my youth.. Ironically, got away with any diagnosis of retinopathy. But there are now newer developments in detecting any issues.
Oddly, just after I cleaned up my act. A little too quickly. I was diagnosed with a macula edema which involved injections.
I realize now I tweaked my BGs & A1c a little too fast. & have a tentative relationship with DVLA. My advice whilst sorting your Aic? Slowly like a decompression..

Yep, a bit of a kick in the teeth. However. Tell us a little more about yourself.

I'm going to tag in @Knikki a long termer who may have his own thoughts..
Also, @himtoo .

You have my best regards.

Hello there ,

I wouldn’t say I was very wild , but I enjoyed life (whist ignoring the diabetes) which I’m hugely regretting now and I’m just in such a dark place I can’t seem to enjoy life like I used to I’m living life in total fear at the moment.

Wow that sounds painful is that a result of your diabetes? How is it now are you better??

I smoke aswell and right now I’m smoking a lot due to the stress I’m in just wanted to reach out to other people with diabetes too thank you for your reply !

 

[Becks33]

Aawww @Becks33 so sorry to read of your diabetes problems, it's hard at times. You have made a big step step forward by reaching out to other type 1's on the forum. I hope you can turn things around,

No one can go back and make a brand new start. But anyone can start from now and make a brand new ending.
Just take small steps, you can do it

Hello

Thank you so much for your reply , I’m definitely trying to make a change but my mindset is very dark at the moment and that is half of the battle but thanks you so much xxx

 

[Becks33]

Have you got a supportive diabetes team? Trial of a Libre might give you that support you need to kick start looking after yourself again x

Hello I have just moved to my area and only getting to know them but they are the ones who took my liscence off me so I automatically don’t trust them but they have to do that I get it! What’s a libre? Xx

 

[Robinredbreast]

Hello

Thank you so much for your reply , I’m definitely trying to make a change but my mindset is very dark at the moment and that is half of the battle but thanks you so much xxx

Hi, many member's know of the dark place, myself included and many have visited, but it's not somewhere we wish to remain.
Keep your chin up and try to think positively, I know it can be very hard, but with help and support, I hope the future will be a brighter place for you x

 

[Becks33]

Hello and welcome @Becks33

Sorry to hear of your issues with complications, have you ever been given much guidance with your diabetes management ? And why do you think you are losing control all the time ?

If we can help in any way and you are able to get back on track then some of the damage can reversed, Dr Bernstein is type 1 and in his 80's and reversed most of his and lives a healthy life. It's never too late but the need and desire is down to you.

Hello there

No I feel very uneducated and I feel the diabetes team that I report too and very medical talking rather then emotional and understanding how I feel so out communication is not great , I have applied for an IMAGE course for more education on carb counting and living with type 1 ect ... but a waiting list

I feel like I loose control like if I do my blood sugar and I put into the meter how many carbs I’m eating and I take the right dosage -2 hours later my sugars are 22mmol and that just exhausts me hugely I’m totally burnt out with it I really am but what’s happening with my eyes I’m eager to learn more about it and keep going as much as I can - things like party’s and holidays I loose control big time xxx

 

[endocrinegremlin]

Hi

Thank you so much for your reply , I have been told the pump would make my life a lot harder and they will not offer me anything else but injections and finger prick.

Sometimes I feel like my diabetes team get angry with me which is difficult I’m going through a lot of surgery on my eyes at the moment and I’m going to counselling aswell.

I’m just afraid of things like going out for meals or even on holidays or traveling or out for a few beers I’m even afraid of going to the gym at this rate , I haven’t enough education so I’m attending a course for carb counting I’ve reached out for help so many times and seem to end up loosing everything the condition is exhausting me mentally and physically at the moment I can barley see out of my left eye and waiting for surgery on that one! I’m just exhausted and wanted to reach out and see if I’m the only one and what other people do to over come this and move on.

Thank you for your reply though Is your diabetes well managed yourself?

I'm going to assume this is for me and replay anyway. Sorry if it isn't!

That is odd but it might be they just want to get you focused on one thing at a time which is fair.

If you feel that your team is not right for you then you should contact the head of the department and tell them that. Ask if there is anyone else that you can work with. It sounds like you have a lot on your plate right now, treatment wise and your diabetic team should support you in that. (also, brilliant that you are getting all that help. well done you!) Though, don't assume they are angry. I am sure they are trying their best for you.

I think a carb course will be brilliant. I am sorry it took so long for you to get one. That course might change everything for you. The T1s are always here with answers of any questions.

My t1 is steady at the moment. I am having problem with my insulin pump but for the most part it is behaving. I don't have any complications thankfully but it is always a battle.

 

[Robinredbreast]

Hello I have just moved to my area and only getting to know them but they are the ones who took my liscence off me so I automatically don’t trust them but they have to do that I get it! What’s a libre? Xx

It's a Continuous Glucose monitoring device. It is attached to your upper arm and you use a small device to scan your BS and the reading and you can see trends that are taking place. I am on a 2 week trial of the Libre and I love it, but it has to go back on Thursday, then I will discuss the usage with my DSN, plus a 2 day food diary, so hopefully I get a permanent one at the end of June at my hospital, I can't wait.

 

[Becks33]

I'm going to assume this is for me and replay anyway. Sorry if it isn't!

That is odd but it might be they just want to get you focused on one thing at a time which is fair.

If you feel that your team is not right for you then you should contact the head of the department and tell them that. Ask if there is anyone else that you can work with. It sounds like you have a lot on your plate right now, treatment wise and your diabetic team should support you in that. (also, brilliant that you are getting all that help. well done you!) Though, don't assume they are angry. I am sure they are trying their best for you.

I think a carb course will be brilliant. I am sorry it took so long for you to get one. That course might change everything for you. The T1s are always here with answers of any questions.

My t1 is steady at the moment. I am having problem with my insulin pump but for the most part it is behaving. I don't have any complications thankfully but it is always a battle.

Hello there

Yes this reply was for you sorry I’m just getting used to this new website!

Yes I understand that they want me to take one step at a time all of this can be very overwhelming.

I have had my runs ins with the team and my family there supporting me I am now seen twice a week and I will take all the help that’s possible because I’m living in total fear at the moment I’m guessing this is normal for people with type 1 diabetes it really is such a task to control and ontop with the complications that can happen

I’m delighted to hear you have no complications that’s absolutely brilliant how long have you had diabetes?

I’m so excited to get on this course and learn more and start moving forward.

Do you ever feel like you don’t get a break? Never let my hair down or relax at the moment for now anyway very tense and nervous all the time I’m going to join yoga to try and relax the mind