Looking for your help and support

[SusanOF]

Hi All,

I run a website here in Ireland called www.mydiabetes.ie The aim of the site is to enable those living with diabetes to share their stories and experiences with the ultimate aim of producing a booklet that could be given to those upon diagnosis. We are all aware of the amount of medical information we receive so the focus of the booklet would be a little different - sharing support and advice and positive outcomes from those living with the condition. I would like to do the booklet in 2 strands - one for Type 1's and one for Type 2's. I think it would have a very positive impact. The response from Ireland has been very slow and I am now on the path to a PR campaign to raise awareness of the site and its aims.

I have already requested permission from the administrator of this forum to post a request and I hope you all may be able to help me. In order to get noticed I need to generate stories, positive contributions and stories dealing with the negative aspects of diabetes also.

If you have the time to share I would really appreciate your input. You can share your stories through the site, email me directly with your story, follow on facebook, encourage your friends to share - whatever you can contribute I would really appreciate it. I don't want the site, or indeed the booklet, to become a personal blog. I think there is so much more to be gained from a multitude of stories and experiences.

I hope you might be able to find the time to contribute and once I gather enough I will make the book available in PDF as a downloadable link. I will publish first names only, the type of diabetes and when you were diagnosed.

I would appreciate your comments as to whether you think this would be something of value - thats just a personal thing to keep me motivated. The site and subsequent booklet is not for profit.

Thanks so much.

 

[Natalie123]

Hi Susan,

I think this is a great idea, diabetes care shouldn't be all about the medication, emotional support is important too, unfortunately when I was diagnosed I didn't have a great experience, I was 16 and was offered no emotional support at all and didn't have any idea how to deal with things. I was made to feel like I should be able to take set amounts of insulin, my sugar levels would be back to normal after about a week or 2 and I would only have to test once every few days - this is what I was told ... as a result I felt like a failure when this didn't happen.

I struggled a lot with everything, not knowing what to expect, my Mum tried her best to help but she is very underweight and doesn't have a very healthy attidude to food which didn't help me much. When I went to uni it was like an escape for me but meant that I let go of my sugar level control and started drinking too much and not taking care of myself. When I found this forum I was at a turning point I think - I was trying to take a realistic and sensible view of my life and diabetes. Everyone here has been so supportive and I owe them a great deal for giving me the motivation to change my life for the better and be positive about my diabetes and my future. Although diabetes isn't great, it has given me the chance to meet wonderful new friends and has shown me that I want to live my life to the full, use my experiences to help others and most of all be happy 🙂

Lots of luck Susan xx If you want to use this I would rather you gave me a different name - I can be a bit paranoid sometimes 😱

 

[SusanOF]

Thanks Natalie. I would love to use thus piece and will most certainly change your name. Thank you so much for your contribution. It's always lovely to hear such positives. Your story is so like my own and to see the positive response about this forum is exactly what people need to hear. Thanks again.

 

[AlisonM]

I was initially diagnosed as a Type 2 in September 2009 when I was still living in London. I was taken ill at home and found by my landlord and the police then carted off to hospital where I was left sitting for several hours with no treatment and no idea what was going on. I was sent home without having had any help, or even been told what might be wrong with me and told to see my doctor. He did some tests and diagnosed diabetes two weeks later. That doctor was briliant as were the rest of his surgery staff, very knowedgeable and very supportive. However, I decided it was time to come home and the doctor here was very dismissive, one of the 'you've done this to yourself so don't come crying to me' school. She didn't even do the basic reading needed to deal with any kind of Diabetic which amazed me as her ideas were at least thirty years out of date.

As it turns out I'm not a Type 2 after all, I'm LADA, and unable to tolerate the drugs they had me on (Metformin, then Glucophage SR). It took some months and a complaint to the PCT to get the doctor to listen to me. Eventually I was tested for antibodies and the diagnosis was changed to LADA/1.5. These days I'm seen up at the Diabetic clinic, I'm taking Byetta/Exenatide injections and waiting to start insulin shortly, although the Byetta is working for now. I have a number of other chronic conditions and the experts are conferring as I type to decide what medications I will need to a) manage my health and, b) give me a half-way decent quality of life.

As a supposed Type 2 I was denied all sorts of tools, such as testing strips, dietary information, or counselling that would have helped me understand the condition and what I could do to manage it. I was left pretty much to my own devices and if it hadn't been for this place I wouldn't have known what to do or how to live with the condition. Places like this are absolutely essential for diabetics of any kind because, quite often, there is no other knowledgable support offered. I have learned so much from the folk in here and the emotional and moral support they've given me has literally saved my life.

For any kind of newly diagnosed diabetic, support and sensible advice are key to a future in which the condition is well managed and the tales of folk in here make it clear that such support is greatly lacking. As an example, there's a thread in here somewhere from a Type 1 who's had her supply of insulin cut - an absolutely idiotic move on the part of her surgery, do they think she's using too much, that she might make it last longer somehow?

So, I applaud your efforts and look forward to seeing the results.

Oh yes, I'm paranoid too, so please change my name too if you use this.

 

[AileenCJ]

Once I get things settled with my diagnosis, you're welcome to use mine.
You may have to remind me, once things have settled down though as I've got a terrible memory

 

[everydayupsanddowns]

Hi Susan

Loved the idea of your site and tried to add a link from our blog but the editor was having a funny five minutes...

Discovering the wit and wisdom of the Diabetic Online Community just over a year ago was a bit of a revelation for me after 20-odd years with diabetes. Support and encouragement from others who instinctively just 'get it', have been where you are and might just have a suggestion to consider should not be underestimated. I wrote about it here:

My DOC-iversary - 12 months that changed my life

Not sure if it's the sort of thing you are after, but you could always quote a bit from one of the posts with a link to the source if it suits.

 

[SusanOF]

Great, great and great. I really appreciate the efforts you are all making and allowing me to share your stories. I will change names of all those who request it without a bother in the world. Read some of your blog everydayupsanddowns last night - and liked it on facebook. Another excellent resource. And I would love to add the DOC-iversary article and of course a link to your blog.

I've spent such a long time trying to get this idea off the ground that I'd nearly given up. But thanks to this forum I'm back, with fire in my belly!!!! Here's to you all - Thanks again.

 

[SusanOF]

Take your time - no rush and whenever you get a chance.

Once I get things settled with my diagnosis, you're welcome to use mine.
You may have to remind me, once things have settled down though as I've got a terrible memory

 

[Pigeon]

I got T1 4 years ago when I was 26, and it was totally out of the blue. The best advice I was given was by a friend who'd had T1 for 10 years who said "don't let it stop you doing anything, just carry your pen and your sweets and away you go". I've tried to apply this advice to everything since, as well as getting as clued up as I can about it through courses at the hospital and reading books.

Looking back on the past 4 years, it hasn't stopped me doing anything, (apart from occasionally having to wait before driving) and I've tried lots of new things too. My highlights were 3 weeks travelling around Canada, eating out every day and trying lots of different activities like canoeing and doing a zip-wire course. I've done the Great North Run half marathon twice, which was an amazing experience, being part of 36000 people all running for different reasons. I'm fitter than I've ever been before, and this year I'm planning to do my first triathlon.

Yes, there have been down-days along the way, and I'm not pretending it's easy, but I find that exercising really improves my mood and control and I'd recommend it to anyone.

 

[caffeine_demon]

Ok here's mine.

I was diagnosed t2 just before Xmas (2010), but had wondered if i may be diabetic on a number of occasions beforehand - thirsty and tired a lot, had a spot glucose test about 10 years ago, and was told it was fine, but I didn't ask what the reading was. Recently I'd been thinking that I didn't want the trouble a diagnosis would bring - but mum persuaded me to get a test.

So- Whilst it wasn't particularly shocking to find I was diabetic, I was scared about my future - was I going to be able to look at chocolate again? was I going to have to inject insulin? (this one REALLY scared me), what diet was I going to have to follow? etc. etc..

The short version is that I think the compromises you need to make aren't as bad as I thought they would be.

The most important piece of advice is to get a test meter - Drs will usually say that they're mostly for type 1's, but I think this is mainly down to the cost of test strips. A good testing programme will let you know what foods you can tolerate - test before meals, and 1 and 2 hours after meals to start with to find when you peak, aim for 4-7 mmol/l before meals and up to about 9 after meals, but if it's a little high to start with, don't panic too much - my figures went down by about 1 mmol/l over a few weeks just by sticking to the same foods. - If you can't afford to use upto 8 strips a day - one approach I've seen is that one week you test breakfasts, the next lunch and so on.

This forum has been another great source of information and support, Along with Gretchen's book on "diabetes, the first year". The section on insulin injections in there has eased my fears if I ever do need to inject.

My HBA1c has gone down from 11.7 to 5.8 in under 6 months, I've lost about a stone and am feeling so much better, ok - I've had to make portions smaller, but haven't really felt as if I'm missing out. Oh - and chocolate's not nearly as bad as I thought it would be. The standard answer when someone asks "can diabetics eat (x)" is to check with your meter - everyone varies, some can't eat porridge at breakfast, some can barely manage a couple of chips - you just need to find out your own limits.

 

[SusanOF]

A big thank you

Hi all,

Its been a while. I just wanted to post and say that I have added your stories to www.mydiabetes.ie (removed/changed names where requested). If you have the time to take a look to make sure you are happy with what is up there I'd appreciate it.

Hope all is good with all of ye - HBA1c's under control and in happy summer form!😉

 

[Caroline]

SUsan, good luck with your project. I hope you get loads of input. Doctors should be a good source of information and support, but some of them are about as much good as as ieve in a leaky boat.

 

[Natalie123]

Well done on the website Susan! It looks great, I'm sure lots of people will find support on your site 🙂