New to here, not to Diabetes!

[chisterette]

Hi,

I've had T1 diabetes for 6 years now and have never really engaged with the diabetes community. I don't know anyone else that is diabetic nor have been to any groups or really met anyone to chat to so thought this forum might bring me out of my isolation!

I've recently been put on the freestyle libre which has been the best thing to happen to me since being diagnosed and am just under a month away from getting my first pump (medtronic 640g) which is very exciting and terrifying at the same time.

Would love to get to know a few other pancreatically-challenged peeps and be part of the diabetes community - looking forward to getting involved!

Anyone here that's a medtronic-whizz that can give me a bit of advice/reassurance?

 

[Northerner]

Hi,

I've had T1 diabetes for 6 years now and have never really engaged with the diabetes community. I don't know anyone else that is diabetic nor have been to any groups or really met anyone to chat to so thought this forum might bring me out of my isolation!

I've recently been put on the freestyle libre which has been the best thing to happen to me since being diagnosed and am just under a month away from getting my first pump (medtronic 640g) which is very exciting and terrifying at the same time.

Would love to get to know a few other pancreatically-challenged peeps and be part of the diabetes community - looking forward to getting involved!

Anyone here that's a medtronic-whizz that can give me a bit of advice/reassurance?

Hi @chisterette, welcome to the forum 🙂 The forum was started by a person who had been Type 1 for over 30 years and never met another, so you have come to the right place 🙂 It can be very helpful to share your experiences with others and draw on their knowledge and experience, so I hope you find it useful 🙂 We have many pump users here with a great deal of knowledge, so I'm sure if you have any questions for them they will be happy to help out 🙂 The Libre is great, good to hear that you have one 🙂 How were you diagnosed and how have things been for you? 🙂

 

[chisterette]

Hi @chisterette, welcome to the forum 🙂 The forum was started by a person who had been Type 1 for over 30 years and never met another, so you have come to the right place 🙂 It can be very helpful to share your experiences with others and draw on their knowledge and experience, so I hope you find it useful 🙂 We have many pump users here with a great deal of knowledge, so I'm sure if you have any questions for them they will be happy to help out 🙂 The Libre is great, good to hear that you have one 🙂 How were you diagnosed and how have things been for you? 🙂

Thanks for the welcome! To never meet another diabetic in 30years is insane! Great idea with the forum.

I was actually misdiagnosed as type 2, put on the maximum metformin and went a year without insulin resulting in multiple hospital trips. It was only when I lost 5 stone, was consistently around the 26mmol/l mark and did a blood test that my specialist intervened and confirmed I was type 1 all along. 🙄

Other than that, control has always been an issue, I get big swings high and low which will hopefully settle on the pump.

@Northerner what’s your story? How’s the dead pancreas treating you? 🙂

 

[Matt Cycle]

Hi chisterette and welcome to the forum. 🙂 I've never met a random T1 in the wild, well I may have but never knew! I'm not really a Medtronic 640G whizz - I've been using it just over a year now but absolutely love it and now wish I'd had one earlier. I'm sure though you'll get on fine with it. I wrote a 'bit' about my experience of getting and using it in the thread below. It may give you a few pointers, tips and assurances.

https://forum.diabetes.org.uk/boards/threads/starting-the-pump-my-thoughts-after-2-months.71419/

 

[chisterette]

Hi chisterette and welcome to the forum. 🙂 I've never met a random T1 in the wild, well I may have but never knew! I'm not really a Medtronic 640G whizz - I've been using it just over a year now but absolutely love it and now wish I'd had one earlier. I'm sure though you'll get on fine with it. I wrote a 'bit' about my experience of getting and using it in the thread below. It may give you a few pointers, tips and assurances.

https://forum.diabetes.org.uk/boards/threads/starting-the-pump-my-thoughts-after-2-months.71419/

Hi! That was a fantastic read, thanks for the link. Its good to hear that others have had a few issues with how the NHS deals with Diabetics, especially expecting you to know about everything they are talking about! 🙄

It’s all the little things you don’t think about now, that will probably surface once I’m hooked up to it!

You mentioned a pouch for sleeping - is this helpful and could you recommend one? I’m quite a restless sleeper and have been very worried I’d yank out the tubing

 

[Matt Cycle]

Hi! That was a fantastic read, thanks for the link. Its good to hear that others have had a few issues with how the NHS deals with Diabetics, especially expecting you to know about everything they are talking about! 🙄

It’s all the little things you don’t think about now, that will probably surface once I’m hooked up to it!

You mentioned a pouch for sleeping - is this helpful and could you recommend one? I’m quite a restless sleeper and have been very worried I’d yank out the tubing

Hi yes, I went for this one:

https://www.pouchforall.co.uk/product/black-super-slim-insulin-pump-waist-band-pouch-copy/

They're not cheap but are handmade in the UK by the lady who owns it. If you have a search round ebay/amazon etc there are quite a few others available. Some people go for spibelts but I thought they looked a little cumbersome. I liked this one because it's made from lycra and quite soft next to the skin, oh and it doesn't spoil the profile too much when I've got my cycling gear on. I only really use it when out on the bike and at night in bed as most of the time the pump is on my belt. It has stretched a little bit over the year or so I've had it (either that or I've lost weight ) but still fits okay but you may wish to consider sizing down if you're at the bottom end of the size or between sizes. I sound like I'm sort of fashion expert but nothing could be further from the truth!

 

[chisterette]

Hi yes, I went for this one:

https://www.pouchforall.co.uk/product/black-super-slim-insulin-pump-waist-band-pouch-copy/

They're not cheap but are handmade in the UK by the lady who owns it. If you have a search round ebay/amazon etc there are quite a few others available. Some people go for spibelts but I thought they looked a little cumbersome. I liked this one because it's made from lycra and quite soft next to the skin, oh and it doesn't spoil the profile too much when I've got my cycling gear on. I only really use it when out on the bike and at night in bed as most of the time the pump is on my belt. It has stretched a little bit over the year or so I've had it (either that or I've lost weight ) but still fits okay but you may wish to consider sizing down if you're at the bottom end of the size or between sizes. I sound like I'm sort of fashion expert but nothing could be further from the truth!

That’s great, thanks! Of course you’re a fashion expert! (But then I wouldn’t know either! 😉)

 

[SB2015]

Welcome @chisterette glad you have come to the forum.

I did not meet others with T1, until I went on my DAFNE course. So good to have a chance to talk to others about the practicalities of day to day management. Since then I have learnt most of what I know from people on this forum. All very helpful.

I now use a pump, but not the same as yours, as well as a Libre. It all helps to make life more flexible and to head off the hypers and hypos.

I look forward to hearing more from you.

 

[stephknits]

Hi and welcome. I was wrongly diagnosed type 2 also and in 2013 . Took 9 months to get rediagnosed. Got my pump a couple of years ago and love it. It will make such a positive difference for you.

 

[chisterette]

Hi and welcome. I was wrongly diagnosed type 2 also and in 2013 . Took 9 months to get rediagnosed. Got my pump a couple of years ago and love it. It will make such a positive difference for you.

That’s crazy! I still don’t understand how it happens! Glad there is so many positives from pump users 🙂

 

[SB2015]

That’s crazy! I still don’t understand how it happens! Glad there is so many positives from pump users 🙂

I could give an extensive list of the advantages of having a pump, and also the Libre, but I suspect you know these already. Such good developments which help improve self management.

 

[KARNAK]

Hi @chisterette I know Mike of @everydayupsanddowns has a video on his Blog showing how to use the pump, very informative. Just click on his forum name were you can access his blog, not sure I am allowed to give you the link.

 

[KARNAK]

Sorry Sue click on profile, left hand side below followers is the link to his blog.

 

[everydayupsanddowns]

Hi @chisterette I know Mike of @everydayupsanddowns has a video on his Blog showing how to use the pump, very informative. Just click on his forum name were you can access his blog, not sure I am allowed to give you the link.

Hello Christerette

Welcome to the forum! There are a few members here who use the MM640G, I’ve had a great experience with mine which I’ve been using for almost 4 years. If you’d like to read/watch any of my ramblings from when I initially trialled the pump with and without sensors, you can find them here: https://www.everydayupsanddowns.co.uk/2015/07/64-days-with-minimed-640g-ep-1.html

 

[chisterette]

Hello Christerette

Welcome to the forum! There are a few members here who use the MM640G, I’ve had a great experience with mine which I’ve been using for almost 4 years. If you’d like to read/watch any of my ramblings from when I initially trialled the pump with and without sensors, you can find them here: https://www.everydayupsanddowns.co.uk/2015/07/64-days-with-minimed-640g-ep-1.html

Hi! That’s fantastic thanks - that’ll be my downtime sorted later today, anything that gets me fully prepared and ready for when I have it!

 

[Joe1251]

Hey I'm awaiting my DICE course to hopefully get a pump although I'm looking to a pump that I would be able to then recommend for my T1D 4 year old (Tubing is definately going to be an issue) so praying to get and Omnipod. I'm basically working as a guinea pig for her!

I know there've been events for diabetic products where diabetics amass so could keep a look out for those as well as charity events. JDRF do a fair amount of charity walks where you can find those elusive diabetics young and old. As my daughter had just turned 1 when she was diagnosed, we were told "Hey talk to these parents!" so was kind of thrust into the community. Guessing it depends where you're at really...