# What has the DUK forum done for you?



## everydayupsanddowns (May 21, 2020)

Without wanting to go all Monty Python, I was just wondering if anyone would like to share their experiences of the forum, and the differences it has made to their diabetes management, their confidence, and their life with diabetes.

I truly believe the forum is a brilliant, supportive and transformative place - but the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD in the UK.

Diabetes UK are trying to work out how to better spread the word and encourage other to join, engage and experience the support and friendship of the forum for themselves, and it would be great to have some of your thoughts about how you came to join and the difference it has made to you.

_How did you hear about it?_​​_Was it recommended? Or did you find it by searching?_​​_Did you lurk first, or jump right in?_​​_How has the forum helped you?_​​_What sort of things make you keep coming back?_​
Anyone got any short and snappy soundbites to offer??

*Diabetes UK is looking for submissions to use for a social media campaign and may contact some of you.*


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## Amity Island (May 21, 2020)

everydayupsanddowns said:


> the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD.
> 
> Diabetes UK are trying to work out how to better spread the word


Hi Mike,

On the mobile phone app, I find the forum invisible (well hidden) on the main diabetes.org.uk website.

Have a look, see if a new user could find or know about the forum. I can't find anything, any links on the main page or in the main menu.

Besides that, yes, the forum is brilliant, it just needs a link adding to the main landing page so people know about it.






						Diabetes UK - Know diabetes. Fight diabetes. | Diabetes UK
					

We are Diabetes UK, the leading charity for people living with diabetes in the UK. Our vision is a world where diabetes can do no harm.




					www.diabetes.org.uk


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## trophywench (May 21, 2020)

Hear Hear @Amity Island !

I first joined the forum in its very early days and found it mainly inhabited by T2s with very little content for a struggling T1 - @ukjohn was already on it and still was until he and his parrot moved home earlier this year - so he's gone missing since (he said he would until he got things sorted there - so TBH, I'm more than a bit concerned about him by now)  Anyway - I had to find something useful and did, successfully.  I had to register in order to access the forum and therefore note it wasn't going to be much help initially, so used another Forum nickname I adopted after Pete joined a forum re his Triumph Trophy motorbike and I wanted to join a conversation on there, rather than use the name I've had since I was in Junior school - originally used by our headmaster to my older sister, he just carried on using it whenever he was in jesting mood, and one of my classmates also called Jennifer carried it on into senior school, cos it was an easy way of distinguishing between us, and between the Sue's, hence our little group of 4 from senior school still comprise Jen, Sedge Pheas (Sue Pheasant) and Fliss (- only one Felicity so NP)   And we're all over 70 now ….


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## Bexlee (May 21, 2020)

I lurked for a little while, reading but not posting.....I was too scared too to start with as it seemed a place where everyone knew each other ! I now feel as if I know everyone.
I love the waking average post which is just general chit chat and a little snippet into other lives.

My DSN suggested I took a look at the website not specifically the forum then I found the forum.....I’m pleased I did

It’s great you can pretty much ask any question and someone will have a bit of advice or an idea or give you a confidence boost.

Not really sure how you can get it out there more. I sometimes wish there could be a little pack every diabetic is given with useful information in it like websites etc. I know you can join things but you need to know they’re there in the 1st place.....maybe there is a info pack you get but I didn’t! 

Keep up the great work


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## rebrascora (May 21, 2020)

I was already a huge fan of forums and the wonderful learning resource they provide from being a member of two others (both animal husbandry), so when I was diagnosed and given Diabetes UK pack it was the logical thing to do and yes I jumped straight in... I'm not a one for lurking.
The forum has revolutionised my diet and provided the day to day information and support I needed to manage my diabetes and probably more importantly, keep my sanity.

I keep coming back to learn more and to help others who are in the situation I was a year ago... overwhelmed, reeling from the shock and struggling to make any progress via the NHS advice I was being given. I also find the support of being part of a community which understands the ups and downs and subtle nuances of managing diabetes, invaluable and to be able to bounce thoughts and ideas off others who are more experienced.


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## rebrascora (May 21, 2020)

I think part of the problem with many diabetics is that they are prescribed tablets and expect (or bury their head in the sand and hope) that will sort it, rather than put in some graft to change their lifestyle. There are very few other conditions where lifestyle changes are more effective than most medication, so the majority of people will assume that the tablets the doc gave them will fix it. It may well also be a lack of the right dietary information.... which is a problem with the NHS ....but also many people are too busy to take time out to completely change their diet and lifestyle (even if they are open to doing that) and why should they bother when the doc gave them some tablets to sort it. You can understand that mentality even if it doesn't match up to reality. 
Maybe more doctors should offer patients an opportunity to make progress without medication for a 3 month period and providing a BG meter and test strips for that initial period instead of medication would be more helpful to get people committed to the idea of this being their responsibility to manage it and the HCPs just provide the necessary resources together with a link to the forum for day to day guidance.

Obviously the above relates more to Type 2 than Type 1. I still kind of see myself as both.


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## Ralph-YK (May 21, 2020)

rebrascora said:


> I think part of the problem with many diabetics is that they are prescribed tablets and expect (or bury their head in the sand and hope) that will sort it, rather than put in some graft to change their lifestyle. There are very few other conditions where lifestyle changes are more effective than most medication, so the majority of people will assume that the tablets the doc gave them will fix it. It may well also be a lack of the right dietary information.... which is a problem with the NHS


I was actively discouraged from doing anything, & excluded and dismissed as the patient. I got brushed offf by practice nurse when I tried to talk to her about my diabetes & being able to control it. I was also told not to come on here, as it'd just confuse me.
Burying head in the sand is aided & abbeted by "authority" (HCP).
[Edited]


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## rebrascora (May 21, 2020)

Ralph-YK said:


> I was actively discouraged from doing anything, & excluded and dismissed as the patient. *I was also told not to come on here, as it'd just confuse me.*
> Burying head in the sand is aided & abbeted by "authority" (HCP).



Wow! How patronising is that!


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## grovesy (May 21, 2020)

I am an early joiner, I think it was mentioned in Balance Magazine. Back then it was just under the Diabetes UK banner but they had little input.


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## Robin (May 21, 2020)

I can’t remember how I found out about the forum. I stumbled across it by accident, I think, when I was looking for some information. I lurked for ages. I wasn’t sure about forums, having never been on one, but took the plunge eventually and got a warm welcome, so decided to become a permanent fixture.
I’d been feeling rather adrift, because I’d been discharged back to my GP for all diabetes care, and the nurse at the surgery had just taken over the job, and was only just getting trained. And then only in Type 2!
If it wasn’t for the forum, I’d never have known about the Libre, and I’d never have discovered that Levemir was a better option for me than Lantus (and I’d never have 'met' all the lovely people on here, some of whom I’ve now met in real life).


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## grovesy (May 21, 2020)

trophywench said:


> Hear Hear @Amity Island !
> 
> I first joined the forum in its very early days and found it mainly inhabited by T2s with very little content for a struggling T1 - @ukjohn was already on it and still was until he and his parrot moved home earlier this year - so he's gone missing since (he said he would until he got things sorted there - so TBH, I'm more than a bit concerned about him by now)  Anyway - I had to find something useful and did, successfully.  I had to register in order to access the forum and therefore note it wasn't going to be much help initially, so used another Forum nickname I adopted after Pete joined a forum re his Triumph Trophy motorbike and I wanted to join a conversation on there, rather than use the name I've had since I was in Junior school - originally used by our headmaster to my older sister, he just carried on using it whenever he was in jesting mood, and one of my classmates also called Jennifer carried it on into senior school, cos it was an easy way of distinguishing between us, and between the Sue's, hence our little group of 4 from senior school still comprise Jen, Sedge Pheas (Sue Pheasant) and Fliss (- only one Felicity so NP)   And we're all over 70 now ….


I riealised he had been seen since just after his move, when you mentioned it, he is not a fan of Diabetes UK increased involvement.


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## Deleted member 25429 (May 21, 2020)

It has given me an immense amount of support when I was first diagnosed it took 10 weeks to see a consultant I don’t know what I would have done without this forum . I was told to take so many units of insulin if I hadn’t got advice from everyone I would have ended up permanently hypo or eating a lot of food . Thanks to everyone x


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## Flower (May 21, 2020)

I happened upon the forum when searching about an eye problem and started reading. I thought you all must somehow know each other as it seemed such a friendly place. I started lurking regularly and reading threads then one August Bank Holiday I decided to join - I almost felt like I was gate crashing but I was welcomed and have had nothing but support and kindness since. 

I hadn't ever spoken about my diabetes since diagnosis and it had really meddled with my mind during sight loss and feet problems. It was such a relief to find people who talked about HbA1c and what an absolute pain diabetes can be. 

I've made some lovely friends virtually and in reality at meet ups, that is such an amazing bonus I hadn't even considered. Having a laugh about the whole thing has done me the world of good. 

I keep coming back to see how people are doing, to see if I can offer any pearls of wisdom and to share the joy of an in range blood sugar!

@Amity Island , the link button to the forum is on the front page across the top next to Membership but I agree it is certainly not prominent.


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## Sharron1 (May 21, 2020)

grovesy said:


> I riealised he had been seen since just after his move, when you mentioned it, he is not a fan of Diabetes UK increased involvement.





everydayupsanddowns said:


> Without wanting to go all Monty Python, I was just wondering if anyone would like to share their experiences of the forum, and the differences it has made to their diabetes management, their confidence, and their life with diabetes.
> 
> I truly believe the forum is a brilliant, supportive and transformative place - but the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD in the UK.
> 
> ...


Like many people I was diagnosed, received zero advice from the GP and away I went with my perscription for metformin. I found the website by accident and yes, I did lurk but then decided to join. From then on I have learnt how to manage my diabetes. I regularly return with additional questions. It is very important to me - it helps loads


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## eggyg (May 21, 2020)

I was diagonosed October 2010 as Type 2 after a distal pancreatectomy. I bought a book in Waterstones about Type 2, read it and then thought, hang on, I’ve had two thirds of my pancreas removed this isn’t describing me. In November I Googled diabetes, I think, and came across this forum. I’d never ever been on or seen a forum but I bit the bullet and signed up. I basically asked if there was anyone like me. I got two replies from two others Twinny? and a Martin who recently started posting again. I cried, I wasn’t  the only one. As the years have past, I now know I’m 3c and am now on MDI. Both of those are only because of this forum, it made me question my DSN about things. It took a few years though. I would never have known about DAFNE and fought to go on it as I wasn’t “ allowed” as I wasn’t a “proper” type 1 diabetic. I wouldn’t have heard of the Libre for certain. But most of all I wouldn’t have met, both online and in real life, the many new friends who “get” me.


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## Amity Island (May 21, 2020)

Flower said:


> I happened upon the forum when searching about an eye problem and started reading. I thought you all must somehow know each other as it seemed such a friendly place. I started lurking regularly and reading threads then one August Bank Holiday I decided to join - I almost felt like I was gate crashing but I was welcomed and have had nothing but support and kindness since.
> 
> I hadn't ever spoken about my diabetes since diagnosis and it had really meddled with my mind during sight loss and feet problems. It was such a relief to find people who talked about HbA1c and what an absolute pain diabetes can be.
> 
> ...


Hi Flower,
Sorry, I meant to say it's not visible on the mobile phone app. It is visible on a pc browser.


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## brisr949 (May 21, 2020)

I found here by searching and hoping ti find somewhere like here, i lurked for a while as i was finding answers just by looking through threads..then decided to join as i had a few questions that i couldn't find the answers to and im so glad i joined. I think you know how i feel about this place and the wonderful people on here..its changed my diabetic life way way for the better and thats down to all the help and support ive recieved here.

Adam.


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## stephknits (May 21, 2020)

I found it through looking on the DUK website I think.  As lots of people know, I was wrongly diagnosed type 2, but didn't know it and was really struggling.  Nothing o did seemed to be working and I felt really guilty that I was getting it so badly wrong.  I lurked for quite a while and then took the plunge.  If it wasn't for the forum I wouldn't have started testing and certainly wouldn't have taken steps to question my diagnosis.  The support and encouragement I received was literally a life saver.  Fast forward to a few weeks ago and once again the forum stepped up to make what were some of my darkest days so much the brighter.  I will never forget sitting outside the acute assessment ward of the hospital at two in the morning and being told I couldn't see my daughter who had just been diagnosed type 1.  The first thing I thought was to reach out to the forum.  There I wouldn't have to explain how I felt, people would just know.  The messages I received were so wonderful, thoughtful, caring and useful.  
So thanks to everyone who make this such a great, supportive community.


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## Lanny (May 22, 2020)

When I became a diabetic in March 2001 my hospital team suggested I join Diabetes UK which I did for a year. Back then there was no forum & the only form of contact & advice was “Balance” magazine. Whilst helpful in my early days it was only one way communication. I also, noticed & felt that it was mostly about T1’s & not enough about T2’s. I was a new T2 on tablets, the new one then, of Novonorm, generic is repaglinide, I think as I’ve stopped taking it a long time ago when I moved onto insulin. So, all the carb counting stuff didn’t really apply to me & went over my head! Although, I carried the DUK phones numbers in my tel/address books & then, my various mobile phones’ contacts list, I always felt reassured to have those phone numbers in case I ever needed it for advice etc, especially the international number when abroad on holidays, I wasn’t a member anymore & had no contact. It was like me always having an asthma inhaler on me in case of an attack even though I grew out of asthma from my teens into my mid/late 40’s: it was reassuring to have it to hand; but, actually periodically dumped unused & replaced as the dates expired! Ironically my asthma has returned now, since 2017, & I actually really do need to have that inhaler on me & to hand!

I knew from the start of the DUK charity but, had no idea at all of an online forum. I only discovered that when all of a sudden my GP practice started imposing a blanket change of test strips & I didn’t have the meter that would take those test strips. My chemist didn’t have the meter either, I asked, so I looked online to buy the test strips for the meter I’d been using for 15+ years. I was horrified by the prices & the best price I found was on the Diabetes UK online Shop. So, I bought 2 boxes of 50 strips each which didn’t last me very long as I was going through a series of hypos then, Jan/Feb 2018 & had to drastically reduce my insulin doses. At first I felt the hypos but, lost that awareness as they continued & I was testing a lot more since I was relying on the meter to tell me of a hypo! I couldn’t get any more of my test strips from my GP & I didn’t know what to do as I knew ai couldn’t afford to keep buying my test strips! I had to buy more from the DUK Shop but, in process discovered a small, in text size, link to a forum that I never knew existed!

I started reading & got to know what the forum was like: my only experience before was message boards for tv shows I liked; was badly hurt by personal comments made by “trolls” & never joined joined another one again. I was very wary of forums & message boards & avoided them all! For me, in the absence of all person to person contact & all the things that the senses, instincts etc tell you, there are only thoughts left through the text written. So, having my thoughts attacked by derogatory comments was deeply personal & extremely hurtful to me: more than anything else, outward appearances etc; what I think is what I am!

But, it wasn’t long before I started posted myself: got to know you lot for the supportive, kind, helpful & even funny, humorous lot you are! Also, got my test strips problem sorted out thanks to the advice I received here.

I read as much as I could the first few weeks & months, soaking everything up like sponge. I actually learnt more from these forums than I did in 17 years, back in March 2018, of being diabetic: was given a meter to test my blood sugars as they had to give me one, I learnt from a lot of T2’s that aren’t given meters, because I was started on blood lowering medication right from the start. Other than checking for hypos & not letting BS go too high when ill, I, & I learnt from here like a lot of T2’s left mostly on their own, didn’t learn how to use meter readings to change & adapt what I eat: learnt a very valuable & useful lesson, from here, to “eat according to my meter”! I also learnt a lot about insulin use. I had only been on insulin for a few years before discovering these forums & was very dependant on the fixed doses I was given. I learnt, from here, what each of my insulin’s, Levemir & Novorapid, did, how they worked, how I could change my own doses to suit my needs, (shush, don’t tell on me, when being deliberately naughty in eating something I KNOW will raise my BS), & how to tell which insulin I needed to adjust (when & how)! Not that I’m in perfect control all the time, even now, but, have a much better understanding of my own diabetes & manage it better.

I really like the mix of everybody across the board of diabetes & I actually find now, not the case back in 2001, that T1’s advice relevant, & helpful, to me as I’m on insulin: not every aspect as I still have insulin resistance that’s not so much the case with T1’s; also, don’t carb count & still have more or less fixed doses that change when my needs change.

But, there was something that really concerned me when I first joined these forums & has now changed that I put forward. The labels attached to each member could be deceiving & gave others, especially newbies like I was, the wrong impression: eg, new member, up to experienced member, which I found, to my surprise & dismaying concern, very quickly after I’d posted over 100 posts. I used those labels to assess & judge how experienced members are & how much I could trust the knowledge behind the advice given. I was REALLY concerned not to wrongly advise someone when I don’t really know myself: just because it said experienced member attached to my name. I like the new labels of  “well known member” much better as it’s less indicative in the implications of the expert knowledge, or not, of members.


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## trophywench (May 22, 2020)

Mmm - the 'nomenclature' thing is purely an accident of forum software @Lanny - but there again I only know that having been closely involved in one diabetes forum for a very long time, otherwise I wouldn't, and don't even know what I'm labelled offhand!  It doesn't concern me what sort of label people have cos sometimes people aren't right even though they're Admin or Founder Member or whatever!  Everybody human makes mistakes!

PS I see I'm Well-Known too, so snap!


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## Docb (May 22, 2020)

Back to the original question....

Answer,  educated me.


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## Michael12421 (May 22, 2020)

I was having a tough time trying to manage on my own in a foreign country whose language I found difficult to learn.  After a particularly bad spell with my diabetes I just typed 'Diabetes Forums' into Google and up came this.  I joined and posted details of the problems I was having at the time and asked if I would be allowed on as, though a British citizen, I did not live in the UK.  Allowed on? I was welcomed with open arms.  As many of you will be aware I have had many problems, actually going through one at this particular time. Members are kind and supportive for which I am extremely grateful. The Spanish health service whilst extremely effiicient and quick to respond to all manner of things is sadly lacking when it comes to diabetes.  I rely solely on the information and advice of the members here which I cannot do without and visit several times a day.


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## Ralph-YK (May 22, 2020)

This is the only place that even has a suggestion of supporting me making changes & managing diabetes.


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## Ralph-YK (May 22, 2020)

trophywench said:


> Mmm - the 'nomenclature' thing is purely an accident of forum software @Lanny - but there again I only know that having been closely involved in one diabetes forum for a very long time, otherwise I wouldn't, and don't even know what I'm labelled offhand!  It doesn't concern me what sort of label people have cos sometimes people aren't right even though they're Admin or Founder Member or whatever!  Everybody human makes mistakes!
> 
> PS I see I'm Well-Known too, so snap!


One tech forum I used to be on had n00b, novice and expert based in entirely on the number of posts you have made.


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## Pine Marten (May 22, 2020)

I came across the forum in 2013 while googling one day, and after reading it a bit a light bulb went on and I found illumination! 

I was diagnosed in 2007, given some diet sheets and more or less left to get on with it. I followed the diet sheets' advice to eat lots of starchy carbs, gained weight and after a while was prescribed Metformin. When I started reading the forum I learned about eating low carb, doing some exercise, and critically, found support and encouragement from people who lived with this thing every day - so unlike the GPs who knew so little about it. I started following the advice here, started to improve, and kept food diaries which I showed to my surgery at my reviews.

Over the years my surgery improved its knowledge, to the point where my GP told me she'd been enthusiastically telling her colleagues about my good control (anonymously of course), and I had much more support from her and the D nurse.

I do recommend the forum to others if I get the opportunity, and it has been a wonderful resource - I could not have coped without it


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## trophywench (May 22, 2020)

Ralph-YK said:


> One tech forum I used to be on had n00b, novice and expert based in entirely on the number of posts you have made.



Yep - it's bollards quite a lot of the time as computer software can't differentiate between complete drivel and jolly helpful.


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## Nick Cliff (May 22, 2020)

Hi Mike
I was recommended the forum by my GP, as one of the resources offered by Diabetes UK.
I took a quick look and then jumped in with a post related to my specific situation.
I found the many and varied responses helpful - in that some made me re-think about my diet, and others reinforced what I was doing and understood.
I re-visit the forum to pick up information from others, and also to share the benefit of my experience with newcomers.
Definitely provides food for thought and a window into common experience - and the many differences between us all.
Regards
Nick


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## SB2015 (May 22, 2020)

I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped.  I was unsure about joining as I had never been involved with any forums.  I was made so welcome, and that was it.  

I have learnt most of what I know about day to day management of my Diabetes from others on here, and found tremendous support from other members.  It has also been great seeing  others at forum meet ups.

I learnt about the Libre and also about pump options from this forum, as well as pre blousing, exercise strategies, ....

Just glad that I found the forum.


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## Ralph-YK (May 22, 2020)

SB2015 said:


> I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped.


I'd forgotten about that. I used the e-mail version. It was good. Pitty it's gone


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## SB2015 (May 23, 2020)

Ralph-YK said:


> I'd forgotten about that. I used the e-mail version. It was good. Pitty it's gone


I was really cheesed off at the time as I felt it was an important resource for those that didn’t have computers,(which would be rare now I think)  and there was still something good about actually being there to actually listen to people.  However there were fewer and fewer calls and when you see how much traffic and how many members there are on here it does make a lot more sense to focus resources on this.


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## Northerner (May 23, 2020)

It warms my heart to hear all the lovely responses here, and just how much it has helped so many people over the years  Those qualities of a warm welcome for all, good humour and genuine support across the board are what have always distinguished our community and made it such a special place  

I was diagnosed 5 months before the forum started and was a subscriber to Balance, so when I got my copy on the 15th November 2008 announcing the launch (on November 14th - World Diabetes Day) I joined immediately. I was familiar with forums, having been a member of several Usenet newsgroups (the forerunners to today's forums) and a Moderator on one for a few years. I'd also been trying various existing diabetes forums, chiefly the DCUK one (which I, like many other people, thought was the Diabetes UK site - they weren't upfront about being totally separate) and a couple of US ones, dLife and Diabetes Daily, but I didn't really like the DCUK site as at the time there was a lot of spam and unsafe advice - I also didn't like the fact that I felt deceived by the name  I was really pleased when I saw DUK were offering their own official site 

At the time, of course, there weren't many people here - I think I was member 60, although a lot of the 'members' prior to that were test accounts. I think there were probably about 10 real people, a couple of whom had actually joined before the launch date - @ukjohn and @PhoebeC are two that I know of  Posts were thin on the ground, but new people joined every day and a community began to build 

Right from the start I found it tremendously helpful - I hadn't been long diagnosed myself - and I can honestly say it has been one of the most rewarding experiences of my life being here, getting to know people, learning new things every day (still am!), and making many, many genuine friends from all walks of life and ages who I would never have encountered otherwise 

I've always thought that one of the good things about diabetes is that there is so much you can do to help yourself and others, however bad things may seem. I have seen countless people over the years completely turn their lives around, and you could not find this combination of knowledge and experience in any other way. I have literally followed the 'case studies' of thousands of people - quite possibly more than some consultants, and certainly more than many GPs and practice nurses, many of whom may never encounter a Type 1, or the other subtleties of this wide-ranging condition.

I've always wished that more people could find and share in this wonderful resource  The forum wasn't well-supported by DUK in the early years, so the commonest way for people to find it was purely by accident. This hasbeen changing since 2015, when DUK began to see how precious a resource it was. One of my suggestions for many years still doesn't appear to have been taken up with any concerted effort - to tap into the huge number of 'offline' DUK support groups across the country. I used to be a member of a local group and nobody there was aware of the forum's existence  I think that if the leaders of these groups were given some sort of training in the use and benefits of the forum which they could then pass on to their members it would give those members access to support outside of the usual monthly meetings which may not be able to address individual's concerns in the way the forum can. 

If healthcare professionals could also be persuaded to pass on a bit of training in the use of the forum instead of simply giving out the name of the website to patients, that might encourage more people to sign up who might otherwise be reluctant to  I'm sure this would not be easy to achieve, but if it could be done, for each of those patients or support group members it would be 10 minutes far better spent than 10 minutes going through some generic 'one-size-fits-all' generic information, like a virtually useless diet sheet, for example, and it would help spread the word to people who may not otherwise be aware just how fantastic a resource this place is


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## eggyg (May 23, 2020)

SB2015 said:


> I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped.  I was unsure about joining as I had never been involved with any forums.  I was made so welcome, and that was it.
> 
> I have learnt most of what I know about day to day management of my Diabetes from others on here, and found tremendous support from other members.  It has also been great seeing  others at forum meet ups.
> 
> ...


It’s starting up again as I’ve just volunteered. It’s called  a befriending service. Do you think it’s the same sort of thing? Just “ passed” my DBS, done some Zoom training and now waiting to be partnered up. This is Cumbria though, it’s a big county with a small population and rural communities. I think this is the perfect time to start it up again. You never know they might roll it out over the country again.


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## Jodee (May 23, 2020)

everydayupsanddowns said:


> Without wanting to go all Monty Python, I was just wondering if anyone would like to share their experiences of the forum, and the differences it has made to their diabetes management, their confidence, and their life with diabetes.
> 
> I truly believe the forum is a brilliant, supportive and transformative place - but the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD in the UK.
> 
> ...



DUK is a great support for people.  Its a great forum with great people and a lovely place to come to enjoy some sharing and indulge in some exchanges in information, informative, generally and friendly communications.

It is Brilliant, supportive and transformative place 

Initially I found DUK by web search when first diagnosed.  It's also represented at the Desmond and Expert courses which are both great courses 

I just jumped right in to the forum - I am not bashful nor slow in coming forward   (I have used forums before for other health issues)

The forum has helped me a lot, the members here with their experience and knowledge are just great, I found out about the importance of using the blood glucose monitor and the low carb diet really helpful in getting my BG levels down and controlled.

I enjoy coming back and visiting whenever just to be among people I know and am familiar with and people who understand, share, care, support, inform and just generally hang out 

Now I am figuring out what the short and snappy soundbites are in order to offer them...... mmmmmm

-- Diabetes UK - Feeling OK 

-- Sugar don't leave me with Diabetes  (song theme tune)

-- Keep on moving toward Sugar Free  (another song theme tune)
But enjoy occasionally a cream Tea

-- Pump it up and fix me up   (athlete image + song pop tune)

a bit lame but maybe a wordery expert can do summat with 

Does DUK have a FB page that can be shared with link to forum, DUK home page.  Maybe local radios in different areas can do a DUK slot monthly or from time to time.  The recipe page would be a good promoter for diabetics and non diabetics I think.

I have shared link to a friend whose husband has been living with Diabetes for a number of years concerning the page on coronavirus and diabetes and I have shared Page links with my aging mother who is borderline diabetic.

Keep up the good work all at DUK


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## KARNAK (May 23, 2020)

I`ve got nothing to add to what has already been said, well done everyone for your comments. What I will say my Consultant who is also my Endocrinologist speaks very highly of this forum and advised me to join to gain a lot of knowledge but speak with your D team before making any medical changes. Thankyou folks for making this forum the best ever. Thankyou Alan @Northerner and Mike @everydayupsanddowns and all the team for want of a better expression thanks for saving my life, love you all. xxx


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## Ralph-YK (May 23, 2020)

SB2015 said:


> I was really cheesed off at the time as I felt it was an important resource for those that didn’t have computers,(which would be rare now I think)  and there was still something good about actually being there to actually listen to people.  However there were fewer and fewer calls and when you see how much traffic and how many members there are on here it does make a lot more sense to focus resources on this.


I can't remember which telephone line cost more. I'd run a couple of Diabetes Uk ones (inc. Peer Support), Cariomyopathy, and several other places. The call charges added up. (Which is why I used the e-mail contact for the Peer Support).
Although I've been on mobile internet, with limited dater most of the time I've been on here, it's cheaper.
The Peer Support was different, and I would have like to have kept both.


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## Ralph-YK (May 23, 2020)

Northerner said:


> One of my suggestions for many years still doesn't appear to have been taken up with any concerted effort - to tap into the huge number of 'offline' DUK support groups across the country.


The support group I've been to the most, the guy running it (at the least) appears completly uninterested in the forum.


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## Northerner (May 24, 2020)

Ralph-YK said:


> The support group I've been to the most, the guy running it (at the least) appears completly uninterested in the forum.


Yes, without wishing to denigrate the work they do I think that some of the group leaders, if they are not comfortable themselves in using the forum, are less-inclined to promote it  They might have less excuse though if promotion was officially 'pushed' by DUK


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## everydayupsanddowns (May 24, 2020)

Jodee said:


> Does DUK have a FB page that can be shared with link to forum, DUK home page



I think social media posts (eg FB page) are exactly what is being planned, and why Diabetes UK was hoping to get some sound bite quotes, examples and experiences that might be used


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## Ralph-YK (May 24, 2020)

everydayupsanddowns said:


> I think social media posts (eg FB page) are exactly what is being planned, and why Diabetes UK was hoping to get some sound bite quotes, examples and experiences that might be used


Oh, diabetes support groups FB group is something that gets mentioned.


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## freesia (May 24, 2020)

I found the forum not long after being diagnosed as type 1. My DSN had recommended the website to look at and as i felt frightened by the diagnosis i tried to find out as much as i could. I must admit that i did lurk around before finally summoning up the courage to post anything. One time i did post about how frustrated and worried i felt having diabetes and messages i had back made me feel i wasn't alone either in my feelings or my daily battle with levels. I've used the forum to find out information and ask questions and have always found everyone to be helpful and kind. Keep up the good work everyone, not sure what i would do without the forum


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## MikeyBikey (May 24, 2020)

I originally joined in the mid-noughties after reading about it in Balance. However, I have to admit I never participated much. I left after two years as it felt very cliquey. There also seemed a degree of bullying.

Not remembering my login (do old ones get deleted after a period of time?) I joined afresh a few years ago. The cliqueness is still here but less pronounced. However, it seems to exist on the other diabetes forums as well.


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## Northerner (May 24, 2020)

MikeyBikey said:


> I originally joined in the mid-noughties after reading about it in Balance. However, I have to admit I never participated much. I left after two years as it felt very cliquey. There also seemed a degree of bullying.
> 
> Not remembering my login (do old ones get deleted after a period of time?) I joined afresh a few years ago. The cliqueness is still here but less pronounced. However, it seems to exist on the other diabetes forums as well.


Are you sure it was this forum? It's only existed since November 2008, and only really started to take off in mid-2009. There certainly wasn't any bullying going on then - I know because I was Admin and read every post!  The forum had no Diabetes UK branding at the time but there is another forum which was around for a couple of years before this one that called itself Diabetes.co.uk (still does and still exists). As memberships grow then there can be more instances of bullying, but we've always tried to crack down on anything like that from the start. I think also that some people are bound to feel there is some 'cliquey-ness' because there tends to be a core group of members who post regularly, but everyone is welcomed equally. Apologies if I sound a bit defensive!


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## everydayupsanddowns (May 24, 2020)

freesia said:


> One time i did post about how frustrated and worried i felt having diabetes and messages i had back made me feel i wasn't alone either in my feelings or my daily battle with levels. I've used the forum to find out information and ask questions and have always found everyone to be helpful and kind. Keep up the good work everyone, not sure what i would do without the forum



Thanks folks! These are really great! Keep em coming


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## sololite (May 24, 2020)

I found the forum very useful when first diagnosed as it helped me understand through other peoples experiences all the things I was unclear about. 

I dip in occasionally now I am into the whole routine but have visited a lot more recently since the virus took hold.

It's a fantastic resource and apart from content provided by the trolls, who frankly should be ashamed of themselves, supports our physical and mental health.


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## trophywench (May 24, 2020)

Every forum in the world gets visited by trolls from time to time but Admins and Moderators are pretty used to getting rid of them PDQ these days!


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## Pina (May 25, 2020)

I was lost, newly diagnosed, and Coronavirus began... I hadn't been told much about my condition, and to be honest, I was a little scared. I didn't know what I could and couldn't eat. This group helped answer my questions, even though they sounded childish sometimes. Thank you for all the help xx


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## ColinUK (May 26, 2020)

I’ve spent years working in the charity sector and was familiar with the main UK diabetes charities. 
When I was diagnosed I googled them and looked at both the big ones and found this one warmer and more my style I guess. So I apologise for staying around!

I’ve used to forum to vent, to become informed, to feel a camaraderie too - even though we’re all different and all of our experiences are different, there are some common threads that weave their way through our experiences and it’s great to see that in the answers and the posts here.

In practical terms of it wasn’t for the forum I would probably have spent too much on a BG monitor that looks nice rather than one which actually did the job.

I also like the more esoteric threads line the gardening ones and the jokey ones


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## Ditto (May 26, 2020)

Can't remember why I was looking for D stuff, just clicked DUK and the forum appeared immediately so I joined. I join things willynilly. I stay because I mostly like the peoples but I miss some people that aren't here now. Feel a fraud being here in one way as I'm the worst Diabetics ever. I don't pass muster.  One of these days...


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## Jodee (May 27, 2020)

everydayupsanddowns said:


> I think social media posts (eg FB page) are exactly what is being planned, and why Diabetes UK was hoping to get some sound bite quotes, examples and experiences that might be used



The risk is the trolls and spammers love places like this so the forum would have to have tip top security measures and Admin / moderators 24/7 on the ball for those that sneak through and start spamming everyone's mail box via the forum.  Having said that from what I cannot see happening the forum does already have that


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## HenryBennett (May 27, 2020)

Like ColinUK, above, I worked in the charity sector for many years and DUK has been well known to me for a long time. I was diagnosed Type 2 after a heart attack in February. Whilst in hospital I was visited by any number of support people for heart, diet, diabetes etc. But the Coronavirus struck just after I left hospital. An initial visit to the cardiac rehab centre and a short visit with the diabetes nurse at my GP. Then lockdown.

So, my first thought: Diabetes UK and British Heart Foundation websites. Both very professional organisations and wonderful support.

This forum is especially good. Congratulations to the Administrator (great job everydayupsanddowns), moderators and well-known members. I seriously would be hard pushed to think of any changes to make it better. So, a big thanks.


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## trophywench (May 27, 2020)

@ColinUK - are you referring to DUK and JDRF, cos I'm not aware of any other adult forum than DUK?


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## annealex1 (May 28, 2020)

Im so glad to be here! Recently joined and ploughing thought the posts. So grateful for the help.


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## everydayupsanddowns (May 28, 2020)

Awwwww! Thanks @HenryBennett *blushes*


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## happydog (Jun 1, 2020)

I was diagnosed with T2 in September 2012.  No one else in my family has this condition and I have never been overweight. The doctor was very matter of fact and said that it was probable that I would need to go onto insulin but they would start with tablets.  I said that I needed time to consider my options and he said that I did not have any and that if I lived for another 10 years I would be lucky.  I was in a state of shock.  I looked on the internet for information and was fortunate enough to come across the forum.  I decided to try to control my condition with diet and exercise and refused the medication.  The doctor was aghast and said I was jeopardising my health by being non-compliant. He was adamant that I did not need to test myself all I needed to do was take the medication offered. On the forum I found a group of lovely, supportive, knowledgeable people who know exactly what it is like to have this condition.  Through their support I stuck to my guns and so far I have avoided having any medication, I have learnt about what I should eat and what effects to look out for.  My BG was 42 last year, has been a little lower, and is a work in progress.  They have just given me another blood test which I fear will not be as good as I have been unable to have my usual amount of exercise until a few days ago.  I also think I may have put on about a kilo as I have eaten as much as usual without the exercise . I have also had some stress as my husband died and my son has been very depressed since. I will always be so grateful to the people on this forum who have been my help and support even at the darkest times.  I would not be as well as I am without their help.  Sorry to say that I have had minimal help from the medical people at the surgery where I go.  They clearly have a formula which is diagnose and medicate and do not listen to any other suggestions or discuss things.  I had a lot of suspect dietary advice too, but I soon found out what to do here.  I think the forum is a wonderful place full of super people who are so supportive.  I love it and owe everything to it.  Thank you all.


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## SueEK (Jun 2, 2020)

I was diagnosed out of the blue in Jan 2019.  Didn't have a clue about diabetes, didn't know anyone who had it and no idea of what I was supposed to do.  I was told at my surgery that I wasn't a typical T2 but to go on medication and cut out the cakes (I don't eat cakes) - that was it.  I was totally flummoxed.  I decided to look at the learning section and work my way through it which I did over a couple of weeks and then had a hunt around and found the forum.  I had never joined a forum in my life so was a little hesitant but knew that I really needed advice.  I got it by the bucketload, everyone was so friendly and I have never felt there was any bullying, intimidation or ridicule whenever I asked stupid questions.  Stupid questions are part of it, it can often be the little things that worry us the most but they get answered just the same as any other question.  I feel I have learnt loads, though do not always apply it, but just to be able to ask questions about anything at all is just brill.
I also love the 7 day waking average, it keeps me in touch with others and you feel like you know a little bit about the people that are posting.  My favourite posts are by @Ditto who is so honest about everything.  You are a great asset so don't do yourself down.  I like the way everyone encourages each other and we all take pleasure in our achievements and feel for each other when things are not going so great.    We have all taken huge pleasure in the birth of @merrymunky s baby and have followed her pregnancy with baited breath - how diverse is this forum!!!
Just one point I would like to make, I work in a surgery and speak to the DN's, we have three.  One I really like and has been helpful but we work different hours.  The other two are weird, they know I am T2 but never ask how I am or how I'm doing.  I can't abide my DN at the surgery I attend and she doesn't like me testing, trying to get strips or being on this site.  She wants me to do exactly what she says and to be perfectly honest, she doesn't know what she's talking about in a lot of instances.  Therefore I shall do what I want to and follow the advice I receive here, if one thing doesn't work I try another and so far I don't think I've done too bad and anything that isn't working is, I know, down to me and me alone.
So, bottom line is, this forum is excellent, love the people, love the subjects, love the camaraderie and great and fair administrators.  Not sure how else you can advertise the site unless there was a hugely expensive tv advert, don't suppose that will happen.
Anyway well done one and all.  Sue x


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## Ditto (Jun 2, 2020)

> My favourite posts are by @Ditto who is so honest about everything.


 Lol! I so wasn't expecting to read that. Thank you, made my day which has been dire, I banged my shin on my new (to me) futon and it swelled up immediately like an egg and went black and I thought I was dying. I didn't even get a chance to rub it. Such a wimp. Everything is blown out of all proportion because of the D, I thought I might lose my leg, I lay there whimpering. I'd be lost without this forum I think.


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## Ian T (Jun 3, 2020)

I was diagnosed T1/LADA in 2016 but have only recently joined the Forum to get more info on C-19.  I wish I had joined earlier as one of the hardest things originally was feeling isolated with the condition.  My first big step forward was when I went on a course at Paula Carr centre in Ashford - it was the first time I had met other people with diabetes and it made a huge positive impact for me just to share experiences and ideas.  For me this forum achieves much of the same - it almost doesn't matter what the topics are it's just good to know that other people are working on the same things as me - some very successfully, some still trying to work it all out.


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## Jeff Stevens (Jun 5, 2020)

This forum has been really good for me. I only recently joined up and I have been a Type 2 for around ten years or so. I've already had some very helpful messages of encouragement and support and it's those messages from people who know exacly what I'm babbling on about and going through, which make all the difference. Here are a few notes about where I am today...

I'm awaiting my next Type 2 review which is due in a couple  of weeks or so. Recently, my surgery nurse told me my BG level (following my blood sample) was way too high at 74 and had gone up from 64 the year before. So I put myself on a low carb diet and have been keeping a food diary (her suggestion) since the start of the week, and I'm going to be submitting another blood sample in a few weeks time to see if I can get my BS level back down to a more manageable level.

Incredibly, my cholesterol level is only 2.3 and every other body function is OK, except my BMI which is 35, which also needs come down, but I'm exercising every day. I have asked her to set me up an appointment with a specialist dietician but sadly, due to this damned virus the surgery he works from is not yet operating as normal, but hopefully that'll change soon.

Meanwhile, I'm doing the best I can regarding my dietary changes and am hoping for the best. The problem is I'm one of the world's worst cooks (seriously). My wife God rest her soul used to tell me the best way to help her in the kitchen was to stay out of it and she was right, but now, needs must and I'm getting into it more and more because I have to. I mean, how hard can it be, right?


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## SueEK (Jun 5, 2020)

Jeff Stevens said:


> This forum has been really good for me. I only recently joined up and I have been a Type 2 for around ten years or so. I've already had some very helpful messages of encouragement and support and it's those messages from people who know exacly what I'm babbling on about and going through, which make all the difference. Here are a few notes about where I am today...
> 
> I'm awaiting my next Type 2 review which is due in a couple  of weeks or so. Recently, my surgery nurse told me my BG level (following my blood sample) was way too high at 74 and had gone up from 64 the year before. So I put myself on a low carb diet and have been keeping a food diary (her suggestion) since the start of the week, and I'm going to be submitting another blood sample in a few weeks time to see if I can get my BS level back down to a more manageable level.
> 
> ...


I’m with you on the cooking Jeff, I can’t abide it. If you carry on with the low carb you will lose weight and then in turn the weight loss and low carb will lower your bg so that’s all positive. Sounds like you have a good DN there which is great as many of them are not very good.  Good luck with it all x


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## Jeff Stevens (Jun 5, 2020)

SueEK said:


> I’m with you on the cooking Jeff, I can’t abide it. If you carry on with the low carb you will lose weight and then in turn the weight loss and low carb will lower your bg so that’s all positive. Sounds like you have a good DN there which is great as many of them are not very good.  Good luck with it all x



Thanks for the words of encouragement. I must admit to not being any kind of expert on these things, despite having been T2 for a long time, so can you tell me what the abbreviation 'DN' means?     (sorry to be thick...)


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## trophywench (Jun 5, 2020)

Hi Jeff - Diabetes Nurse LOL


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## trophywench (Jun 5, 2020)

Do you perchance, test your own blood glucose at home?  If not - would you consider it a reasonable suggestion, so you can assess whether your food choices are doing you any good (diabetes-wise) or not?

We can point you at affordable, reasonably priced ones if you would, cos it is something we highly recommend.


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## SueEK (Jun 5, 2020)

Jeff Stevens said:


> Thanks for the words of encouragement. I must admit to not being any kind of expert on these things, despite having been T2 for a long time, so can you tell me what the abbreviation 'DN' means?     (sorry to be thick...)


Sorry Jeff, it’s diabetic nurse. I’m no expert either, still learning every day, we all have diabetes but it affects us all in different ways so exploring is a big part of it x


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## everydayupsanddowns (Jun 5, 2020)

Jeff Stevens said:


> so can you tell me what the abbreviation 'DN' means?



No apology needed @Jeff Stevens - and no such thing as a silly question here 


In fact regular members fall into using abbreviations so often that we put together a list of the ones commonly used









						Acronyms and Abbreviations
					

Here is an alphabetical list of acronyms and abbreviations you may come across on the forum:  Health-related  A1c - Shortened version of HbA1c the blood test that checks average BG over previous 6-12 weeks ADA - American Diabetic Association  Basal - 'Background', long acting insulin (eg Lantus...




					forum.diabetes.org.uk
				




Which I just had to edit as DN wasn’t on it!


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## Leonora (Jun 10, 2020)

I found this forum by chance when I was first diagnosed. What it has done for me more than anything is...made me unafraid.


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## SueEK (Jun 10, 2020)

Leonora said:


> I found this forum by chance when I was first diagnosed. What it has done for me more than anything is...made me unafraid.


~Great post - just what the forum should be for x


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## Lizzzie (Jun 12, 2020)

It's provided friendly advice from people who generally 'get it.'   And sympathy, sometimes, when I've felt alone.   I hate my diabetes at the moment;  this place always cheers me up.


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## Hazel (Jun 14, 2020)

Helped me, educated me, supported me.

Plus through diabetic meets from Glasgow to Brighton and all points in between, I have met up with so many beautiful souls, a number of whom have become life long friends.

So thank you


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## Northerner (Jun 17, 2020)

Hazel said:


> Helped me, educated me, supported me.
> 
> Plus through diabetic meets from Glasgow to Brighton and all points in between, I have met up with so many beautiful souls, a number of whom have become life long friends.
> 
> So thank you


We must get back to those when it is safe, @Hazel!


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## trophywench (Jun 17, 2020)

good many things it'd be nice to get back to Alan, chunter chunter ...


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## Pina (Jun 17, 2020)

When I was diagnosed in the end of March, I was stunned. Then this pandemic happened, I felt abandoned. But.... I found this wonderful group of people, who answered my questions, and made me feel better. Thank you all for answering my little questions. xx


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## everydayupsanddowns (Jun 18, 2020)

Pina said:


> When I was diagnosed in the end of March, I was stunned. Then this pandemic happened, I felt abandoned. But.... I found this wonderful group of people, who answered my questions, and made me feel better. Thank you all for answering my little questions. xx



That’s lovely @Pina - so pleased the forum was able to help you when you needed it!


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## everydayupsanddowns (Jun 19, 2020)

I believe the forum was plugged on DUK’s social media channels yesterday. Hurrah!


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