What do you need help with?

[DiabeticPanda]

Hello,

I'm just doing a bit of research into the challenges that newly diagnosed type 1 diabetics are dealing with in 2016. If you could comment with your personal experience I'd really appreciate it!

Thanks,
Allana

 

[azure]

Hello,

I'm just doing a bit of research into the challenges that newly diagnosed type 1 diabetics are dealing with in 2016. If you could comment with your personal experience I'd really appreciate it!

Thanks,
Allana

Hi Allana,

Can you explain a little more about your research? Is it a study you're doing?

 

[DiabeticPanda]

Hi Azure,

Of course! Basically I've been diabetic for 10 years and I remember it was a real struggle to get to grips with being diagnosed with such a life changing illness. Over the years I've found that Doctors are great with the 'Why' and helping you to understand why diabetes has the effect that is does but no one really talks about the 'How' as in how do you live with it day to day.

I'd like to develop a programme to help newly diagnosed diabetics with the practical day to day side of diabetes but as I was diagnosed 10 years ago it'd be great to get feedback from people who are going through that now or have done recently.

Thanks,
Allana

 

[azure]

Thanks for the answer @DiabeticPanda

I was diagnosed more than 20 years ago so I don't think I'm qualified to answer : D

There was a recent thread in Type 1 on a similar subject - something like 'how could care be improved'. If you have a look back through that section you may find useful information there too.

 

[DiabeticPanda]

Thanks @azure I'll have a look

 

[Carol F]

I'm finding with my son aged 8 that the recommended check (2hrs) after insulin is too long. At the moment.. i check him after an hour... quite often he is heading towards 3.9...i'm guessing as he is still in the honeymoon period..

 

[DiabeticPanda]

I'm finding with my son aged 8 that the recommended check (2hrs) after insulin is too long. At the moment.. i check him after an hour... quite often he is heading towards 3.9...i'm guessing as he is still in the honeymoon period..

Hi Carol, yes the honeymoon period is tough! When it ends there'll most likely be another adjust period but after that things will start to settle. It's was about 18 months after my diagnoses when my honeymoon period ended abruptly which was hard but so much better in the long run and now I have much better control

 

[ElkBond]

I was diagnosed in Feb 2016 (24 yo), hardest thing for me is still the injections.

Control seems good at the moment, haven't been above 9 at any point in a good month.

 

[DiabeticPanda]

@ElkBond wow so really recently! Welcome to the club I suppose ... it gets better

When you say injections are the hardest thing, do you mean actually doing them or remembering to do them? Initially I found actually doing them really tough but after a while it turned into actually remembering and dealing with the consequences when I didn't.

What's the healthcare like in your area? Do you feel that you have enough resources? I find that the standard of diabetes care can massively differ depending on where abouts you are in the country.

Thanks!

 

[Kellyx]

Not sure if this will be any help to you but I was diagnosed nearly 14 years ago when I was aged 6. To this day I still remember the hardest thing for me personally was that for a long time I didn't know what was actually wrong with me. I was in hospital for 2 weeks and finally when I was well enough to leave I was just told that I needed injections for the rest of my life and to check my blood sugars, I could understand that but I couldn't understand why I needed that.. I felt sorry for my mum and dad as they were left to try and explain to a little 6 year old what was wrong but as I was so young it was difficult to understand. I really felt like the hospital didn't try to explain anything to me or help me! I knew I was a 'diabetic' but didn't really know what it meant which obviously I did understand as I got older but felt my mum and dad were left with most of that and had no help from the hospital as it was such a shock and new to them too! Which I feel also made school life for me at that age difficult due to confusion and the Unknown!

 

[ElkBond]

@DiabeticPanda Yep I am still learning! The diabetic care I have received has been fantastic I have to say, no issues switching to a Accu-Chek mobile and Lancets, initially the nurse at the practice said I might not be allowed. I was quickly moved to Tresiba when Lantus was a nightmare with me. After seeing that my control is great and that I am active with an unpredictable lifestyle I am now considered for a pump (although I have to do all the courses and what not first). Every meeting my diasend is up and the CGM and other information has been discussed. Today I have had initial check up up on my feet to make sure everything is all good to begin with.

The injections are the toughest part due to my needle phobia, I do them every time, never skipped one but if theres a meal that can be 0-10 carbs I'll have it to save a jab. I also find if I watch the needle going in, it will hurt, if I don't, I don't notice it...clearly all in my head. The state I was in early on.. best way to deal with phobias is head on. I still hate it, sometimes hesitate but the 20 min warmups have gone! It once took me an hour to press the Dexcom plunger down.... not my finest moment.

I am the kind of person who once told I was a t1 went around finding every bit of information I could and resources were plentiful (especially on here). I self fund a CGM which I can't stop praising enough. I bought it a few weeks after I was diagnosed. Its peace of mind, control (I don't like not being in control!!!), early warnings and overnight safety. Price could be better but what price can you put on all the above. It gave me the confidence to return to normal life relatively soon.

Overall now, I don't really think my life is any different. Theres a few additions but it hasn't stopped me doing anything. I was back to work within a week of diagnosis, back to driving a month or two (when my new license arrived) and my diet is pretty similar (I cook every night from scratch so just knocked a few carby ingredients away).

Hope this essay was enough! Any more questions just fire away!