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Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Hi everyone
- Thread starter Antipova
- Start date
- Status
- Relationship to Diabetes
- At risk of diabetes
Hello @Antipova ,
Welcome to our forum! Their are loads of type 1's here and you are more than welcome to share your experience with diabetes. How did you find us?
Antipova
New Member
- Relationship to Diabetes
- Type 1
I was looking for groups, I'd seen the forum before but not joined. It's 8 yrs since diagnosis, my friends are lovely but it's difficult to understand the condition until you've lived it, and I'm feeling the need for solidarity
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello @Antipova and welcome 🙂
How do you manage your diabetes - are you on MDI or a pump, which insulins do you use, do you have a Libre? Is there anything in particular you wanted to talk to other type 1s about, or did you just want to find some other people who understand how it feels to have it?
How do you manage your diabetes - are you on MDI or a pump, which insulins do you use, do you have a Libre? Is there anything in particular you wanted to talk to other type 1s about, or did you just want to find some other people who understand how it feels to have it?
Antipova
New Member
- Relationship to Diabetes
- Type 1
Hi! I'm MDI, can't get a Libre funded, my CCG are very stingy with them. I've been feeling a bit worn down with the unrelenting, day after day, foreverness of it all lately. I've been having worsening retinopathy too & nasty laser treatments, despite working really hard on managing BGs (my last hba1c was 50, which for me is fantastic). Its just good to get to know other people having similar experiences. I'm getting better at asking for my needs to be met but it's a challenge sometimes with non diabetics (why do people always ask you to explain the intricacies if your insulin therapy while you're gripped with a sweaty hypo!!?) and I hope I can help others too with the very small amount of experience I have x
ColinUK
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- He/Him
By sharing our own experiences we do help others so thank you for joining this merry band and wanting to pitch in.
One thing you’ll see quite quickly is that although we all have diabetes of one sort of another, or we care for those who do, we are all different. It’s sharing our unique experiences which helps others I think.
I’m T2. Light dose of metformin and trying to follow a moderate / low carb way of eating. Sometimes though there’s nothing like a pizza or a chocolate trifle
One thing you’ll see quite quickly is that although we all have diabetes of one sort of another, or we care for those who do, we are all different. It’s sharing our unique experiences which helps others I think.
I’m T2. Light dose of metformin and trying to follow a moderate / low carb way of eating. Sometimes though there’s nothing like a pizza or a chocolate trifle
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome from me too
I totally understand your need to interact with others who experience similar challenges, frustrations and occasional successes and this forum is great for all that so I hope you will find it beneficial.
Libre is a fantastic bit of kit and i think Abbott are still offering a free 2 week trial if you haven't used it before and have a suitable phone. As regards getting it on prescription, there are things that you can perhaps do to push that a bit in your favour although many of us self funded initially (Not cheap 😳) . Find out why they feel you don't qualify for one.... ie ask your consultant/nurse and ask for them to put it is writing. Then you can work on turning that around. Or obtain the NICE guidelines for prescribing it and build a case for yourself based on that. Being proactive is important. After 2 refusals I went in having composed a list of points with evidence.... food diary and BG readings for specific incidents where I felt the Libre would have improved things. However the big "foot in the door" bonus point, which I am sure helped me, was going on an intensive education course. I did DAFNE (Dose Adjustment For Normal Eating) but there are other local variations. Push your team to be put forward for such a course if you haven't had one. One of the huge benefits of this course is that you get to spend a whole week with other Type 1 diabetics and learn from each other. The educators are brilliant and as they are DSNs, they understand and will often fight your corner to get tech or a change of insulin which they feel may be more suitable for you. Despite it's name, the course is about so much more than carb counting and for me the big change was being confident to adjust my basal insulin to match my needs and that can make a huge difference to your diabetes management, but I genuinely believe that my consultant was much more open to prescribing Libre because I had done the course. There is a Libre Academy on Abbott (the manufacturer's website) and you could perhaps do some learning there which might also show your consultant that you are being proactive about this. Finally on the subject of Libre, they are I believe, extending the prescribing of them at the moment, so now is as good a time as any to make a case for yourself.
I see you are on MDI. Which insulins are you using? Finding the right insulin for the way your body works and your lifestyle can also make a big difference and there can be quite a difference in how they work, particularly basal (long acting) insulins and adjusting the dose when necessary or even the time you take it can make a big difference. These are all things I have learned here on the forum, so there is lots of information as well as support here to tap into.
As regards it being relentless, diabetes "burn out" is a recognized condition and can be really tough but people here have a few tips and tricks to help cope with it.
Finally, you might like to join us on the "Group 7-day waking average" thread which is a bit more of a virtual "community drop in" thread where we post our waking reading each morning (ignore the "average" bit in the title as it seems to have morphed away from that now) and share a bit of info about our plans for the day, our trials and tribulations with our BG levels and sometimes a bit of banter. It is a sort of all day coffee morning. Feel free to join us and get to know us a bit better and just jump right in with your waking reading today or tomorrow or whenever.... You will soon get the hang of it.
Oh and by the way, many congrats on your most recent HbA1c result. Great result!
I totally understand your need to interact with others who experience similar challenges, frustrations and occasional successes and this forum is great for all that so I hope you will find it beneficial.
Libre is a fantastic bit of kit and i think Abbott are still offering a free 2 week trial if you haven't used it before and have a suitable phone. As regards getting it on prescription, there are things that you can perhaps do to push that a bit in your favour although many of us self funded initially (Not cheap 😳) . Find out why they feel you don't qualify for one.... ie ask your consultant/nurse and ask for them to put it is writing. Then you can work on turning that around. Or obtain the NICE guidelines for prescribing it and build a case for yourself based on that. Being proactive is important. After 2 refusals I went in having composed a list of points with evidence.... food diary and BG readings for specific incidents where I felt the Libre would have improved things. However the big "foot in the door" bonus point, which I am sure helped me, was going on an intensive education course. I did DAFNE (Dose Adjustment For Normal Eating) but there are other local variations. Push your team to be put forward for such a course if you haven't had one. One of the huge benefits of this course is that you get to spend a whole week with other Type 1 diabetics and learn from each other. The educators are brilliant and as they are DSNs, they understand and will often fight your corner to get tech or a change of insulin which they feel may be more suitable for you. Despite it's name, the course is about so much more than carb counting and for me the big change was being confident to adjust my basal insulin to match my needs and that can make a huge difference to your diabetes management, but I genuinely believe that my consultant was much more open to prescribing Libre because I had done the course. There is a Libre Academy on Abbott (the manufacturer's website) and you could perhaps do some learning there which might also show your consultant that you are being proactive about this. Finally on the subject of Libre, they are I believe, extending the prescribing of them at the moment, so now is as good a time as any to make a case for yourself.
I see you are on MDI. Which insulins are you using? Finding the right insulin for the way your body works and your lifestyle can also make a big difference and there can be quite a difference in how they work, particularly basal (long acting) insulins and adjusting the dose when necessary or even the time you take it can make a big difference. These are all things I have learned here on the forum, so there is lots of information as well as support here to tap into.
As regards it being relentless, diabetes "burn out" is a recognized condition and can be really tough but people here have a few tips and tricks to help cope with it.
Finally, you might like to join us on the "Group 7-day waking average" thread which is a bit more of a virtual "community drop in" thread where we post our waking reading each morning (ignore the "average" bit in the title as it seems to have morphed away from that now) and share a bit of info about our plans for the day, our trials and tribulations with our BG levels and sometimes a bit of banter. It is a sort of all day coffee morning. Feel free to join us and get to know us a bit better and just jump right in with your waking reading today or tomorrow or whenever.... You will soon get the hang of it.
Oh and by the way, many congrats on your most recent HbA1c result. Great result!
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Antipova
I am very glad that you have found the forum. We are a rare breed so it is quite common for people to know nobody else with the condition. You have already had loads of advice from @rebrascora so I will just encourage you to ask any questions that arise. Nothing is considered silly on here, and there is loads of experience to tap into.
I am very glad that you have found the forum. We are a rare breed so it is quite common for people to know nobody else with the condition. You have already had loads of advice from @rebrascora so I will just encourage you to ask any questions that arise. Nothing is considered silly on here, and there is loads of experience to tap into.
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
I was very lucky with the Libre, my diabetes care is split between two counties - consultant said I ought to get sensors on prescription but never would in his county, but my diabetes nurse contacted the other county and a random consultant there who had never met me said I should have them on the basis that I have minimal hypo awareness and so was doing a lot of testing (and had already bought my own reader). Postcode lottery is dreadful, but I do think it has improved - now there are specific guidelines for who should get Libres a lot more people are getting them - so it is worth persisting.
My diabetes is feeling a bit relentless at the moment too - today was a four hypo day, so I'm exhausted!
My diabetes is feeling a bit relentless at the moment too - today was a four hypo day, so I'm exhausted!
MikeyBikey
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello. You never really get used to it and I say that from the position of a six decade man. I am a bit of a dinosaur on MDI with porcine insulin. Sorry to hear you are having eye problems. Did you lower your Hb1c suddenly as this often seems to trigger retinopathy. I started fighting for a Libre years ago but have got nowhere. A change of clinic hasn't helped and being on a low pension makes self funding. I remember it being very hard to get meters and test strips forty years ago!
Wishing you well.
Mikey
Wishing you well.
Mikey
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
- Status