If I'd only known then what I know now...

[Northerner]

What would have helped you most when you were diagnosed? Is there something that you think has contributed the most to your management of your diabetes, that you weren't told about and had to find out for yourself? Did anything hinder you in getting to grips with your diagnosis?

I think I was personally very lucky, and got good advice and guidance from the start, but I'm aware that there are lots whose experience was quite the opposite.

 

[Pigeon]

Don't just think it's about giving up sugar! I used to have extra mains or cheese and crackers instead of a pudding, then wonder why readings were high.

Oh, and connected to this, learn to carb count! Even on fixed doses of mixed insulins, it helped no end and things strated making sense!

My final one would be if you don't need much insulin, get a half unit pen!

 

[Catwoman76]

What would have helped you most when you were diagnosed? Is there something that you think has contributed the most to your management of your diabetes, that you weren't told about and had to find out for yourself? Did anything hinder you in getting to grips with your diagnosis?

I think I was personally very lucky, and got good advice and guidance from the start, but I'm aware that there are lots whose experience was quite the opposite.

Over 20 yrs ago I wish the hospital ( where my sister lives ,North Tees near Middlesborough) told me that when I left the hospital I would be doing more exercise and burning up calories ( having done no exercise for a week) that I may get a hypo😱 I was out with my sister and felt so strange, it did frighten me at the time, my sisters doctor told me to reduce insulin by 2 units and then sent me on my way.
Even though I accepted diabetes and just got on with it, I felt so vunerable and alone at times, especially as my Ex left us in the January and there was no other adult here at the time. I wish there was more support and help then. Sheena

 

[Northerner]

Don't just think it's about giving up sugar! I used to have extra mains or cheese and crackers instead of a pudding, then wonder why readings were high....

I think the dietary advice I was initially given wasn't very good. I wish I'd been told about GI/GL as it would have helped me understand about fast and slow carbs more. Looking back, the first 6 months or so I was eating pretty much what I wanted and only checking my levels prior to the next meal, rather than seeing what the food might be spiking me to in between 😱

 

[brett]

What would have helped you most when you were diagnosed? Is there something that you think has contributed the most to your management of your diabetes, that you weren't told about and had to find out for yourself? Did anything hinder you in getting to grips with your diagnosis?

I think I was personally very lucky, and got good advice and guidance from the start, but I'm aware that there are lots whose experience was quite the opposite.

i think sites like these would have helped alot, rather than having to find them yourself not one proffesional has recomended it. Also all the nurses/consultants lead you to believe you can get it right with meds only. I have found that this is impossable for most always needing to anticipate how much insulin is left in you and your current levels and how much extra carbs you need till your next meal without spiking. They advise on how to treat hypos, but no advice was given on eg if your level is 6 with 2 hours of insulin left how many carbs you should have as a snack. Had to figure out for myself as probably most others. But some advice should be discussed with proffessionals rather than seeing a 6 thinking great and then having a hypo an hour later. These are just a few of many problems each individual faces on a daily basis. im sure we will all get ther eventually knowing how to read each situation and anticipating things but more in depth discussions should be done rather than just the obvious hypos/hypers. Also a full knowledge of how fats and proteins affect bs levels was not covered even on the type 1 carb counting course i attended in my area. apologies for the rant but i have had such a struggle to get things under control on a self learning basis through sites such as this and other info on net which without i would have been all over the place.

 

[Pumper_Sue]

Blood testing strips, back in the 60's no such thing existed. 🙂

 

[Northerner]

i think sites like these would have helped alot, rather than having to find them yourself not one proffesional has recomended it. Also all the nurses/consultants lead you to believe you can get it right with meds only. I have found that this is impossable for most always needing to anticipate how much insulin is left in you and your current levels and how much extra carbs you need till your next meal without spiking. They advise on how to treat hypos, but no advice was given on eg if your level is 6 with 2 hours of insulin left how many carbs you should have as a snack. Had to figure out for myself as probably most others. ...

Some enlightened professionals do recommend forums, but I suspect many of them are suspicious about the kind of information that might be taken from 'amateurs' like us 😉 But I think the main thing that forums such as ours brings is peer support - the knowledge that you are not the only one going through it, and you can learn from the experiences of others.

I agree about the situations like being (in theory) fine at 6.0, but not being made aware of the duration of insulin and how your levels might continue to drop. As I recall, there was very little that I was told about hypos, I think I just read about them in the DUK book I was given. Personally, I think every Type 1 should be given a copy of Ragnar Hanas' book about Type 1 - it would have straightened me out on a lot of things much sooner 🙂

 

[brett]

Some enlightened professionals do recommend forums, but I suspect many of them are suspicious about the kind of information that might be taken from 'amateurs' like us 😉 But I think the main thing that forums such as ours brings is peer support - the knowledge that you are not the only one going through it, and you can learn from the experiences of others.

I agree about the situations like being (in theory) fine at 6.0, but not being made aware of the duration of insulin and how your levels might continue to drop. As I recall, there was very little that I was told about hypos, I think I just read about them in the DUK book I was given. Personally, I think every Type 1 should be given a copy of Ragnar Hanas' book about Type 1 - it would have straightened me out on a lot of things much sooner 🙂

Totally agree with professionals not recommending these sites as they think of "amateurs" giving advice. The best advice i have read and got is from other people in the same situation, as you said peer support. You can discuss situations with proffessionals and they will advise on what they have bben taught, not what they have experianced.

 

[RachelT]

I'm not sure what my trust's policy on advising people to go to sites on the internet for support is. we're only too happy to mention Diabetes UK, so when the fuss has died down at the top (major management re-recruitment at the moment) i might ask if i can put up a poster or something in reception.I'd also mention that this very sight has been quoted in a trade magazine about how the internet is empowering patients, which is generally recognised as a good thing in the NHS.
I'd not hesitate to recommend this site to anybody, it's one of the things that helped me the most, like someone said, just knowing that you're not the only person going through whatever you're going through is a huge help. And unlike some places i went to before i found here, nobody's allowed to get preachy or holier than thou or "do this or you'll die!" about anything. It's a brilliant place to come.
I'd also like to say that Gretchen Becker's "First Year" book was a huge help, especially the early chapters that reiterated the most important point for me when i was first diagnosed..."It's not your fault." I'd say that overcoming the feelings of guilt and blame on myself was crucial to learning to live with diabetes.

Rachel

 

[pgcity]

Carb counting is essential.
Estimating the GI of your food is essential.
Timing of injections is important.
Regular exercise helps keep fasting readings stable.
All hypos are different and need different amounts of carbs depending on when you last ate and injected and when you will next eat and inject.
You need a half unit pen if your correction factor is bigger than 3 (ie total insulin units less than 30 per day).
Get hassling for a pump at your first appointment.
Go and see the practice manager to sort out a monthly repeat prescription with the right amount of meds. Get one months supply in advance.
Blag spare meters from your supplier, leave one at work, one by your bed and carry one with you at all times.

 

[Northerner]

...I'd also like to say that Gretchen Becker's "First Year" book was a huge help, especially the early chapters that reiterated the most important point for me when i was first diagnosed..."It's not your fault." I'd say that overcoming the feelings of guilt and blame on myself was crucial to learning to live with diabetes.

Rachel

Yes, as with the Ragnar Hanas book for T1s, it would be good if T2s were given a copy of Gretchen's book and perhaps have a session with a nurse going through the first few chapters if it would be helpful to the patient. Getting that understanding right at the start -even if you don't absorb much of the details - is surely the best start for someone. I get the impression that so many are left feeling either confused, or abandoned after they've got the news - the message should be about all the positive things you can do to manage the condition, not guilt, shame ignorance and fear.

 

[Steff]

Agree with Rachel that book was an absolute godsend to me in the first 6 months i ordered that 4 weeks after being diagonsed and still look at it to this day..

Ive got to say initially all i thought i had to do was cut our sugar and i would be fine how wrong was that 🙄

 

[trophywench]

It's hard to comment really - as Sue said, would have been good if they'd invented Blood sugar monitors; it would have been good if they'd invented MDI, good if we didn't have glass and metal syringes blah blah blah

- but I was given absolutely A1 advice of the day, under one of the best consultants there ever was in the land up to then (Prof John Malins - famous for doing pioneering work at the QE in Birmingham that enabled diabetic mothers to have live births .... I believe that Ragnar Hanas actually worked under him initially but don't quote me on that cos I'm not 100% sure where I've had it from)

And I just assumed every diabetic got equally brilliant treatment - why wouldn't I?

I never uttered one single word of complaint about the NHS - because they were totally wonderful - until 1998 when I moved to Coventry ......

 

[imtrying]

Carb-counting!!!!!!!!!!!!!!!

 

[slipper]

Was told my diet was fine, but then I tested and came on here.

My PN is excellent for making the various appointments for specialist tests, cant be faulted, but I wanted to know HOW to achieve the BS figures she recommended.

 

[cherrypie]

I have had excellent care from day1 and cannot fault any Health Care Professional that I have come into contact with.
The one thing that puzzles me is what could I have done differently prior to diagnosis as it would appear that I was doing all the right things
I console myself by accepting the words my G.P. spoke to me, "Your pancreas is knackered".

 

[Northerner]

I have had excellent care from day1 and cannot fault any Health Care Professional that I have come into contact with.
The one thing that puzzles me is what could I have done differently prior to diagnosis as it would appear that I was doing all the right things
I console myself by accepting the words my G.P. spoke to me, "Your pancreas is knackered".

Always wondered what the medical terminology for it was 😉

 

[Brendan]

Totally agree with professionals not recommending these sites as they think of "amateurs" giving advice. The best advice i have read and got is from other people in the same situation, as you said peer support. You can discuss situations with proffessionals and they will advise on what they have bben taught, not what they have experianced.

I actually explained the benefits of this site to my GP last week. He was using the standard line of go to diabetes.co.uk but I explained that I found the information on this site very useful. The best way I could describe it to him was Feel, Felt Found.

e.g. Somebody puts an entry on regarding an issue they have and generally the responses are along the lines of.......

I know how you feel
I felt the same
This is what I found

There is invaluable experience, knowledge and advice available here.

 

[Lauren]

I wish we had MDI and carb-counting when I was little - I was just on a set amount but wasn't told I had to keep my carb amounts roughly the same each day. So one day I would have a yoghurt for breakfast and would wonder why I kept going low at school, and another day I'd have 3 pieces of toast and my blood would be sky high when I got home in the afternoon Wish my Mum had had support and guidance on how to look after me too - she was not given much info at all and there was no internet then, just some leaflets we'd been given promoting the benefits of exercise and diet.

But I'm very grateful that Diabetes health care has improved so much over the last 20 years 🙂

 

[PhilT]

I consider myself lucky, as I have had good support from my medical team from the start.

I also think that forums like ours are great as nobody knows more about a medical condition then the people who actually have to live with it every day. Doctors may know all the science behind a medical condition, but to truly understand it you have to live with it.