Fantastic Site!

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annaspanna80

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Type 1
I am finding this site so helpful and informative! I feel sad that there was nothing like this when I was a teen, as I found my DCN difficult to cope with - she always used to tell me off when I saw her, as my HbA1c was always too high, and I thought she used to just say things to me to scare me, so didn't take much notice! Wish I could of had access to other people with diabeties - if I only knew then what I do now!

I want to put my story on here - not because I want sympathy, but because I want others to benefit from my mistakes.

I was diagnosed aged 7, after having my pancreas removed when I was born. My Mum was (and still is) my rock. She helped me with everything. I had several fits as I was growing up, requiring hospitalisation. Mum was always there to hold my hand. The fits were always during the night, and Mum was always the one to find me. We both grew so scared that I would fit during the night, that we allowed my BS to run on the high side. Therefore, making my HbA1c high. This poor control went on for years and years, and now I really struggle to get control.

In 2005, I started to have bleeds in my eyes, and i have had to have laser several times. It doesn't get any easier! In October 2008, I had a major bleed in my right eye. It left me with no vision in that eye. I saw my specialist, who said it would drain. It didn't. I was off work for 2 months, and on restricted duties for 3 months. I could not drive, and I lost my independance. In March 2009, I had a major operation on my eye, to remove the blood. After a slow recovery, I could finally see out of my eye again after 5 months.

My message to you guys is PLEASE don't ignore your DCN's when they warn you of the complications - try your very hardest to reduce your HbA1c and don't do as I did and run on the high side, because you think it's safer. It's not!

Until going on this site, I haven't known where or how to tell my story, I just knew I wanted to. I hope by telling it, I can help to inspire even 1 of you to help yourself.

Take care x
 
Thank you so much for telling us your story Anna. I think sites like this are one of the great advances people with diabetes are now able to take advantage of, like the pens and BG meters and all the new knowledge. So pleased to hear that you managed to regain your sight - you have certainly been through the mill over the years. We have a few members here who are diabetic due to having their pancreases removed, and I know this brings additional problems to deal with. Your message of hope, and your warning, are very welcome 🙂
 
annaspanna80 said:
I am finding this site so helpful and informative! I feel sad that there was nothing like this when I was a teen, as I found my DCN difficult to cope with - she always used to tell me off when I saw her, as my HbA1c was always too high, and I thought she used to just say things to me to scare me, so didn't take much notice! Wish I could of had access to other people with diabeties - if I only knew then what I do now!

I want to put my story on here - not because I want sympathy, but because I want others to benefit from my mistakes.

I was diagnosed aged 7, after having my pancreas removed when I was born. My Mum was (and still is) my rock. She helped me with everything. I had several fits as I was growing up, requiring hospitalisation. Mum was always there to hold my hand. The fits were always during the night, and Mum was always the one to find me. We both grew so scared that I would fit during the night, that we allowed my BS to run on the high side. Therefore, making my HbA1c high. This poor control went on for years and years, and now I really struggle to get control.

In 2005, I started to have bleeds in my eyes, and i have had to have laser several times. It doesn't get any easier! In October 2008, I had a major bleed in my right eye. It left me with no vision in that eye. I saw my specialist, who said it would drain. It didn't. I was off work for 2 months, and on restricted duties for 3 months. I could not drive, and I lost my independance. In March 2009, I had a major operation on my eye, to remove the blood. After a slow recovery, I could finally see out of my eye again after 5 months.

My message to you guys is PLEASE don't ignore your DCN's when they warn you of the complications - try your very hardest to reduce your HbA1c and don't do as I did and run on the high side, because you think it's safer. It's not!

Until going on this site, I haven't known where or how to tell my story, I just knew I wanted to. I hope by telling it, I can help to inspire even 1 of you to help yourself.

Take care x
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hi anna, thank you for sharing your story. In a way, we are very similar - I rebelled when I was at school and college and it has led to nueropathy. I've actually written a post about it over on my blog www.talkingbloodglucose.com

Those of us who have learned from our mistakes, I think, make great role models for the young and newly diagnosed.
 
anna thank you for you story and big hugs coming virtually your way ...we have been discussing how to help the teens on another thread and its soooo difficult ...this site is good as its all about support and storys like yours are so important x good luck 🙂
 
Hi Anna,

thanks for sharing your story with us.

I've been through something similar myself with retinopathy. Thankfully, I 've not needed to have a vitrectomy and my eyes have settled down.

SilentAssassin is right, it's up to those of us who have made the mistakes to make sure that others don't do the same. Perhaps, through sites like this where younger members can read our stories, the message will come across that you really need to look after yourself and not ignore the diabetes.
 
Hi Anna,
Your story has scard me yet hopefully put things into perspective. Your story is basically the same as my sons, and the reason for me looking for this website in the first place. My son has had fits due to severe hypos, always in the night, and I have become so frightened that it will happen again, that we are tending to do, just as you did to run sugars on the high side, hopefully avoiding any further fits. Now I have read your story I realise that this is not the right thing to do, and I thankyou for sharing it with us. Good luck,
 
Anna,
I am so glad you have told your story on here. My son is 12 and I am sure that when he reaches teenage years he will start to rebel etc and I always worry how to handle it. If people like you are willing to tell your story - then this will go some way to helping some see the bigger picture. I can tell him til I am blue in the face all the complications - but its much better coming from someone who has *lived* through all the emotions and rollercoaster that living with diabetes can cause.
Have you ever thought about doing voluntary work for DUK weekends for families and children? I think you (and some others on here) would have so much to give the newly diagnosed and those teenagers who are rebelling.🙂Bev
 
CarolK said:
Hi Anna,
Your story has scard me yet hopefully put things into perspective. Your story is basically the same as my sons, and the reason for me looking for this website in the first place. My son has had fits due to severe hypos, always in the night, and I have become so frightened that it will happen again, that we are tending to do, just as you did to run sugars on the high side, hopefully avoiding any further fits. Now I have read your story I realise that this is not the right thing to do, and I thankyou for sharing it with us. Good luck,
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Hi Carol, I am sorry to scare you, but I think it is important people know the truth. One way to put your mind at rest, although it is a pain, is to set an alarm to test sugars in the night. I did it for years, and it just became second nature after a while. My low time was usually 4am, and I was able to have a snack if it was too low. I believe I stopped several Hypos that way. I keep Jelly babies next to my bed - easy to eat in the night, as they require little effort! All the best.
 
Anna - thank you for sharing your story with us. I am glad things are getting better for you again.
 
bev said:
Anna,
I am so glad you have told your story on here. My son is 12 and I am sure that when he reaches teenage years he will start to rebel etc and I always worry how to handle it. If people like you are willing to tell your story - then this will go some way to helping some see the bigger picture. I can tell him til I am blue in the face all the complications - but its much better coming from someone who has *lived* through all the emotions and rollercoaster that living with diabetes can cause.
Have you ever thought about doing voluntary work for DUK weekends for families and children? I think you (and some others on here) would have so much to give the newly diagnosed and those teenagers who are rebelling.🙂Bev
Click to expand...

Hi Bev, Thanks for your comments - no I haven't considered doing any voluntary work - but I may look into it! Thanks 🙂
 
Thanks anna,
I will certainly take that advice, and get him to test around 3 ish, and then hopefully, when I get up at 7, I can make sure he is alright. Maybe this will, as you say, cut down the chances of any more severe hypos. Its good to know there are people who know how it feels to go through this.
Thanks again
 
Nice to hear from you Anna. Thanks for sharing your story. Hope things are getting much better for you now you have better control. Look forward to hearing from you again soon.🙂
 
Hi Anna, good of you to post as you have.

Posts like yours point out in a very real way that things really can go wrong so although the practice nurse can come across as a bit ditzy if she gives a warning then I really need to listen and do something about it.

This site is brilliant. I read far more than I post and someone actually said on another non-diabetes forum that I sounded really clued up. Hah! But reflecting on what I know now compared to two months ago - I have learnt a lot.
 
Anna

Thank you for posting your story. I think it is important for us all to remember that complications can happen if were not careful. I am glad to hear that you regained your sight x
 
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