Burnout, retinopathy and only 5 years in!

[pearceam]

hi everyone

Never posted on a forum before. Hoping to make some new contacts.

I'm type 1 diagnosed 5 1/2 years ago at the age of 24. I had a really long honeymoon period so eased through my first 2-3 years, thinking I could handle it. Since that ended, I've never had a particularly good hba1c. Actually having to carb count and work everything out to exercise has become a chore and a bore and I think I'm now in burnout. I have spent a month or two (still injecting) really not paying attention to carb counting just guessing and hoping for the best. Managing to stay under 15 most days.

I had my diabetic eye screening and they told me I have early signs of retinopathy. Then a night or two ago, hyperglycaemia woke me up, >25. That was when I realised, its not just a number on a meter.... it's my life.

I don't know any diabetics. I guess I was hoping for a friendly message to not feel so alone.

Thanks!

Happy New Year!

 

[kimrooney89]

hi everyone

Never posted on a forum before. Hoping to make some new contacts.

I'm type 1 diagnosed 5 1/2 years ago at the age of 24. I had a really long honeymoon period so eased through my first 2-3 years, thinking I could handle it. Since that ended, I've never had a particularly good hba1c. Actually having to carb count and work everything out to exercise has become a chore and a bore and I think I'm now in burnout. I have spent a month or two (still injecting) really not paying attention to carb counting just guessing and hoping for the best. Managing to stay under 15 most days.

I had my diabetic eye screening and they told me I have early signs of retinopathy. Then a night or two ago, hyperglycaemia woke me up, >25. That was when I realised, its not just a number on a meter.... it's my life.

I don't know any diabetics. I guess I was hoping for a friendly message to not feel so alone.

Thanks!

Happy New Year!

Happy New Year to you too @pearceam.

I've been diagnosed as T1 for 10 years..throughout that time there have been periods when i have tried to 'forget' that im diabetic and even resisted taking my insulin as I didn't want to gain weight...

I think what you've experienced is the realisation of how severe diabetes is, and also acceptance of your illness.

I only joined the forum yesterday, i dont know any T1 diabetics either. So far this forum has been amazing for gaining knowledge and information on all things diabetic. The people are very friendly and will always lend an ear

 

[blueeyed81]

Hi, I've been diabetic 16 nearly 17 years . I've been there myself and it's only really been the last just over 2 years, since having my son that I've been trying to get back to doing things properly. The only time I've had a good a1c was whilst pregnant and when I was first diagnosed.

I've had burn out a lot and recently too. My inbox is always open if you need a rant or just want to chat.

I'm now on countdown to getting a pump eeeeek on the 23rd .

Happy new year to you too @pearceam

 

[himtoo]

Hey @pearceam
welcome to the forum
glad you have woken up to the hard side of D -- but keeping control can definitely keep the complications at bay

my advice is to try and be kind to yourself -- this lasts a lifetime -- so beating yourself up doesn't help.

taking small steps and keeping your focus on 1 day at a time is what helps to put the D in its cage !!!!!

keep posting

all the best !!

 

[daisymj14]

Hi @pearceam

I've had type one since I was 7, now 25 I've only just started looking after myself! Years of eating what I want without knowing my blood glucose levels! Silly girl I know, but past is past and I'm feeling much more positive after joining this forum.
Drop me a message if you want to chat, you are not alone, and you will certainly feel fully supported on here.

 

[lizdeluz]

Hi @pearceam, happy new year!
Yes, we are with you, you are not alone with this, we know what you are talking about. As I explained recently on another thread, when I was diagnosed Type 1, over 30 years ago, I kind of decided that I would quietly manage my diabetes and play down its effects to other people. As you will realise, although, on the surface, it might appear a selfless way to proceed, in fact it was a kind of denial, and not to be recommended!
What I really needed to do was take time for myself, for learning more about diabetes and how to manage it - within the limits of the knowledge available at the time.
A lot more is understood now about diabetes, there is a lot of help on this forum and on various websites to help you do the best you can to look after yourself really well. Try not to think of it as a chore, but as a 2017 New Year gift to yourself? Include relaxation as well as a diet that won't spike your blood sugar. My own personal favourites are yoga, swimming, aromatherapy, a low carb diet, and a sense of keeping an eye on my health better than anyone else can just because of my constant presence!

 

[noblehead]

You've come to the right place for help & support so welcome to the forum @pearceam

We have a thread running discussing Diabetes Burnout where members share their experiences, so your not alone by any means:

http://www.diabetes.co.uk/forum/threads/diabetes-burnout.13994/

As for you being told you have diabetic retinopathy, if you have a read of the following website it has some great information & advice on the condition and how you can prevent it developing to the next stage:

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

Take care and best wishes for 2017.

 

[pearceam]

Happy New Year to you too @pearceam.

I've been diagnosed as T1 for 10 years..throughout that time there have been periods when i have tried to 'forget' that im diabetic and even resisted taking my insulin as I didn't want to gain weight...

I think what you've experienced is the realisation of how severe diabetes is, and also acceptance of your illness.

I only joined the forum yesterday, i dont know any T1 diabetics either. So far this forum has been amazing for gaining knowledge and information on all things diabetic. The people are very friendly and will always lend an ear

Thank you for your message.

Happy New Year to you too @pearceam.

I've been diagnosed as T1 for 10 years..throughout that time there have been periods when i have tried to 'forget' that im diabetic and even resisted taking my insulin as I didn't want to gain weight...

I think what you've experienced is the realisation of how severe diabetes is, and also acceptance of your illness.

I only joined the forum yesterday, i dont know any T1 diabetics either. So far this forum has been amazing for gaining knowledge and information on all things diabetic. The people are very friendly and will always lend an ear

Hello

Thank you for your reply. I really didn't expect any responses so thank you for taking the time.

It is reassuring to know that there are other people when you need to vent about things non-diabetics don't get.

Please stop by my inbox anytime with anything you need too. It would be great to build a group of people on here I can chat to.

xx

 

[pearceam]

Hi, I've been diabetic 16 nearly 17 years . I've been there myself and it's only really been the last just over 2 years, since having my son that I've been trying to get back to doing things properly. The only time I've had a good a1c was whilst pregnant and when I was first diagnosed.

I've had burn out a lot and recently too. My inbox is always open if you need a rant or just want to chat.

I'm now on countdown to getting a pump eeeeek on the 23rd .

Happy new year to you too @pearceam

Hello!
thank you for replying. I am on a waiting list for a pump too! I am so hopeful but also really nervous so I would be really interested in your emails about how you are getting on with it and what it is like etc.

My husband and I would love to have a baby. The doctor told me at the moment, it is too risky with a high hba1c which I think might have triggered the wake up call!

I am not sure how the forums/contacts etc work so if you are able to "add" me or email me to keep in touch please do.

Good luck with your pump
xx

 

[pearceam]

Hey @pearceam
welcome to the forum
glad you have woken up to the hard side of D -- but keeping control can definitely keep the complications at bay

my advice is to try and be kind to yourself -- this lasts a lifetime -- so beating yourself up doesn't help.

taking small steps and keeping your focus on 1 day at a time is what helps to put the D in its cage !!!!!

keep posting

all the best !!

Thank you for posting! I really am grateful to have so many responses....

 

[pearceam]

Hi @pearceam

I've had type one since I was 7, now 25 I've only just started looking after myself! Years of eating what I want without knowing my blood glucose levels! Silly girl I know, but past is past and I'm feeling much more positive after joining this forum.
Drop me a message if you want to chat, you are not alone, and you will certainly feel fully supported on here.

Hello!

Thank you for posting to me! I am still finding my way around the site so am unsure how to contact people or "add" them to keep regular contact so advice there would be great!

I would love to keep in contact, you sound like you are in the same boat as me. Making a fresh start and moving on and learning from previous mistakes.

I am on a waiting list for an insulin pump so am trying to hold my own with the injections until then.

The part I find the hardest at the moment is also trying to lose a few lbs. I am an intermittent runner too which is hard to balance. Do you have any plans on what you're doing to improve your hba1c?

Amy
x

 

[pearceam]

Hi @pearceam, happy new year!
Yes, we are with you, you are not alone with this, we know what you are talking about. As I explained recently on another thread, when I was diagnosed Type 1, over 30 years ago, I kind of decided that I would quietly manage my diabetes and play down its effects to other people. As you will realise, although, on the surface, it might appear a selfless way to proceed, in fact it was a kind of denial, and not to be recommended!
What I really needed to do was take time for myself, for learning more about diabetes and how to manage it - within the limits of the knowledge available at the time.
A lot more is understood now about diabetes, there is a lot of help on this forum and on various websites to help you do the best you can to look after yourself really well. Try not to think of it as a chore, but as a 2017 New Year gift to yourself? Include relaxation as well as a diet that won't spike your blood sugar. My own personal favourites are yoga, swimming, aromatherapy, a low carb diet, and a sense of keeping an eye on my health better than anyone else can just because of my constant presence!

Hi!

Thank you for replying to me! I never thought about taking time to do things like this until now. I saw it as numbers on a screen and that I had to share them with a nurse. It never really sunk it what it meant, until they told me about my eyes. It seems insane to write down. That a diabetic doesn't know what diabetes means.... But like you said 2017 is a year to look out for my health.

I am interested in your experience with a low carb diet. I am struggling to find the right balance and find that I run too low if I don't bulk my meals out with carbs. I am also terrified of hypo's so if I get down to 4-6 I eat without insulin out of fear...

Would love to hear from you.

Amy
x

 

[pearceam]

You've come to the right place for help & support so welcome to the forum @pearceam

We have a thread running discussing Diabetes Burnout where members share their experiences, so your not alone by any means:

http://www.diabetes.co.uk/forum/threads/diabetes-burnout.13994/

As for you being told you have diabetic retinopathy, if you have a read of the following website it has some great information & advice on the condition and how you can prevent it developing to the next stage:

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

Take care and best wishes for 2017.

Hello

thank you so much for replying and providing the links

Amy
x

 

[blueeyed81]

Hello!
thank you for replying. I am on a waiting list for a pump too! I am so hopeful but also really nervous so I would be really interested in your emails about how you are getting on with it and what it is like etc.

My husband and I would love to have a baby. The doctor told me at the moment, it is too risky with a high hba1c which I think might have triggered the wake up call!

I am not sure how the forums/contacts etc work so if you are able to "add" me or email me to keep in touch please do.

Good luck with your pump
xx

I'm not sure either, I'll send an inbox and take it from there. What is your a1c, mine was high when I conceived, can't remember what now.

 

[AndyS]

Hi @pearceam

You've definitely come to the right place for help from people that will have a pretty fair idea what life is like with this.

You mentioned carb counting etc but have you actually done any courses to help you there?
One of the things that I learned on that but more so from some of the folks I have met on here (and at the pub for the London meet ups) is to knock down the problems one at a time.

My own experience has been to try and have a bunch of "go to" meals that I know the carb count for 100% and so when things are getting a little out of hand I have some known quantities to work from.

Your fear of hypos is not uncommon, the range you defined is actually my target range. The key is that once you get the various key aspects (basal, Insulin Carb ratio, insulin correction and carb effects) all mostly dialled in you may find your confidence to do nothing at those levels will improve. My specialist nearly had a fit when I told her I happily go to bed in the mid to low 5's but since I am flat overnight (when my basal is right, just recently had to adjust again) the risk is pretty low.

Depending where you are based it might help to try and hook up with some others in the same boat, not talking formal meetings etc more just lunch at a pub or coffee or something with other T1's. As I mentioned before I have learned a ton from the folks I have met in London.

Best of luck and don't worry, you will get there.

/A

 

[pearceam]

Hello @AndyS

Thank you for your message!!

I have done a carb counting course, I have also asked to be seen again by a dietitian for a re-fresher.

I would like to have some more confidence to remain at 5/6 and not panic eat, I think this will come with getting a pump? I am so convinced that I have insulin stored in a secret place that will leap into action at any time and bring my BG down.....

I see you mention Novorapid variable ratios.... curious to what that is?

Thanks for talking to me!

Amy

 

[catapillar]

I would like to have some more confidence to remain at 5/6 and not panic eat, I think this will come with getting a pump? I am so convinced that I have insulin stored in a secret place that will leap into action at any time and bring my BG down.....

I see you mention Novorapid variable ratios.... curious to what that is?

I have just had a really brief read of this thread and I just wonder if you have a grasp of what a pump does and how pumps work.

If your on a waiting list for a pump it would probably benefit you to have a look into that a bit. Pumping insulin by john Walsh is a great guide on how to get the best out of a pump.

I think "variable ratios" is talking about insulin to carb ratios. So the ratios used might change through the day and be variable.

 

[AndyS]

Hello @AndyS

Thank you for your message!!

I have done a carb counting course, I have also asked to be seen again by a dietitian for a re-fresher.

I would like to have some more confidence to remain at 5/6 and not panic eat, I think this will come with getting a pump? I am so convinced that I have insulin stored in a secret place that will leap into action at any time and bring my BG down.....

I see you mention Novorapid variable ratios.... curious to what that is?

Thanks for talking to me!

Amy

Variable ratios, yes. Essentially my Insulin to Carb ratio changes depending on time of day. I did a lot of trial and error with that but by constantly going over my log I zeros in on them.
Currently I am on 1.5u : 10g in morning
1u : 10g at lunch
2u : 10g at dinner (if dinner is early / before my night time basal)

I have also found that these tend to change now and then so the important thing is to always review my log and see if there are any trends starting to appear then making adjustments. Just writing everything down is pointless if you aren't reviewing it regularly. Also there is no way your HCP can review it properly in the few minutes they have to see you every few months.

/Andy

 

[AFoxy74]

I've been diabetic 27 years I ignored it for 14 years only takin insulin regularly didn test bg at all then it killed me! Paramedics revived me, that was the kick I needed to take it seriously, please don't let it kill you before u take it seriously! I was really lucky!!

 

[Diamattic]

Welcome @pearceam !

Diabetes is not something anyone likes to think about, at least for me - I try to avoid it.

I do my best not to think about it, but instead just think about what can be done for it. I have done my best to just make checking and counting as mechanical and non-personal as I possible can.

Its almost like putting on a seat belt in your car - you never think of WHY you have to use it just that you should, so you do without question and move on with the trip. Some times it will get tight and you have to adjust it, or after a long time its uncomfortable but we always keep them on and just fuss around with them. Try your best to learn how to carb count, so that it becomes second nature something you can do in your head so fast your don't release its being done, and then make injecting like clicking in that seat belt, once its done move on with your trip.

Don't think about it, just what you have to do for it - disconnect the two and it becomes a lot easier IMO.

This isn't medical advice its just how I manage to deal with things as I am like you - I know only 2 diabetics in real life and never see either of them so I had to work things out myself... and on here.

All the best! Congrats on your new you!