Type 1 diabetic

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Dave.j1984!

Dave.j1984!

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Relationship to Diabetes
Type 1
Hi everyone
I have been diagnosed with type 1 diabetes now for two years and I thought I could do it on my own but to be honest I have got to a point where I’m feeling like everyone close to me just doesn’t understand
 
Welcome @Dave.j1984! 🙂 There are lots of people here who understand - and it’s a relief to be among them🙂 I’ve had Type 1 for almost 30 years and I’ve found this forum really helpful. Not just for advice but for support, understanding and friendliness.

Are you on injections or a pump? Do you have a Libre?
 
Thank you I didn’t think I would ever do this as I’m using a forum but I have already started to feel better lol yeah I’m on lantus 24 hour release which I was given when diagnosed then only got my nova rapid this year which is rediculous and I have had the libre for about 6 weeks also have only just been contacted by the cliatition who has said that the lantus is not the right insulin for me
 
Hi and welcome from me too.

So pleased you have found the forum. It really does help enormously being able to share thoughts and feelings here with people who face the same challenges day by day and meal by meal and night by night and moment by moment really.... you don't get time off from diabetes and it affects us far more than just what we eat. Also really helpful to learn little tips and tricks from each other to make life a little easier or BG levels a bit more stable, which can have a significant impact on emotional and mental health as well as make the stats look a bit better. Mostly it helps you feel less alone in managing what is an incredibly complex and sometimes quite isolating condition.

Please tell us more about how you manage your diabetes, (MDI or pump and which CGM) and which insulin(s) you use. And anything you find particularly frustrating or challenging.

The shared experience of the forum often means that we have more practical knowledge than most DSNs or Consultants who of course know the theory, but you really have to live with it to get the practical knowledge and here we have centuries of shared experience between us, so I am sure you will find it helpful being part of our community. There is no "one size fits all" with diabetes but there are commonalities and the key to good management is experimenting to see what works for you, and here we can suggest things to experiment with.
 
I just feel like I am having to do it alone my girlfriend hasn’t understood as I am very snappy and anxious about everything so I have come to stay with my parents for a while and she is now pregnant but she is being very distant as her brother is 33 and has terminal cancer I want to be there for her but she is not letting me and it’s very frustrating
 
Ah, I see our posts crossed.

Great to hear you have Libre.
Must be a bit of a culture shock getting Novo(not so)Rapid 🙄 added after a year! Most of us started long acting and meal time insulin together from the start and whilst that was challenging, I think it is probably better in giving you a realistic approach from the start. Are you carb counting or just using fixed doses? Have they suggested which long acting insulin they are going to move you onto, if Lantus isn't suiting your needs?
I can't disagree with you about NR, but in what particular way are you finding the NR ridiculous? It certainly can be sluggish for some people!
Have you been offered a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is, as this can be really helpful not only for enabling you to learn and become more confident with dose adjustment but also in meeting other Type 1s in person and sharing your experiences and feeling "normal" It is sometimes run as a week long intensive course or one day a week over several weeks. I did the full week and really found it beneficial and it improved my confidence a lot and particularly with adjusting my long acting insulin. I had already learned a lot of the content from this forum though so had a good back ground understanding and that has been instrumental in me learning to manage and cope with my diabetes well. I now feel like I am in the driving seat and whilst it is a bit like having a car with wonky steering and duff brakes and a sticky accelerator, you do learn to account for those failings and manage to get from day to day reasonably safely without having too many deviations or bumps, but don't ever expect it to work perfectly because it just doesn't, you just have to learn to work around it's idiosyncrasies.
 
Really sorry to hear it has affected your relationship and not surprising as it really is life changing and mood changing until you get things under better management. Hopefully having some time and space living apart will help you to appreciate each other more and also give you time to get to grips with your diabetes management and get more confident with it. Really sorry to hear that her brother is terminally ill as that will add another layer of emotional complexity to the situation. Really hope some space will enable you to reconnect and offer each other the love and support you both need, especially when you have a baby on the way.

Are you carb counting your meals or just injecting a fixed dose for each meal?

Can you post a screen shot of your Libre graph for a couple of days so that we can see where you are at with your diabetes management.
 
Yeah I’m carb counting and using the carbs and Cals app but I’m struggling with when to do the fast acting when I eat I have been trying different times like before I eat and after I eat but can’t get it right
 

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This is some days
 

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Barbara - I don't think he finds the Novorapid itself ridiculous, just that it took him so long to get it !
 
Inka said:
Welcome @Dave.j1984! 🙂 There are lots of people here who understand - and it’s a relief to be among them🙂 I’ve had Type 1 for almost 30 years and I’ve found this forum really helpful. Not just for advice but for support, understanding and friendliness.

Are you on injections or a pump? Do you have a Libre?
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Sorry for the delay in responding I need to get used to this I thought I was talking to the same person lol
 
Dave.j1984! said:
Yeah that’s it I can’t believe how bad my gps are I had to pester them to get it
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Why are you being treated by your GP practice? You should be getting support from a specialist diabetes clinic at a hospital where there are staff who have the knowledge and experience to help you manage your diabetes. A GP or nurse at a doctors surgery do not have the the training or knowledge to help you. Please insist on a referral to a specialist clinic. I think you should be able to quote NICE guidelines. Who is the clinician you mention who suggests that Lantus is not suiting you?
That 30 day graph suggests that your overnight levels are really good, but those individual daily graphs clearly show some very nasty multiple hypos, assuming they are real hypos and not just compression lows. Did you double check them with finger pricks to confirm you were actually low? Libre can record false lows (compression lows) if you lie on the arm with the sensor on it.

What advice have you been given for treating hypos?
 
I was referred to a dietitian 3 weeks ago and she was very helpful and she got the clinician to get in touch with me and that was Wednesday and yes I did test my finger and it was hypo so the dietitian suggested to drop the lantus by 2 units and it has helped I have done the last 2 years working it out myself
 
Well, it looks like you did really well on the 12th and the 21st with those graphs being mostly in range, so hopefully that Lantus reduction has sorted the overnight lows problem.

As regards the post meal spikes, breakfast is particularly troublesome for most of us and usually needs extra time for the insulin to work before you eat breakfast. I had to wait up to 75 mins with NovoRapid at breakfast time to prevent spikes and even with Fiasp now which is quicker I usually need 45 mins although this morning it took a lot less, for some reason and nearly caught me out! I am certainly not suggesting you inject your insulin that far in advance of breakfast but experiment with increasing it by a few minutes every day until the spike flattens out. Going a bit over 10 is not a problem, but going up to mid teens every day and then coming down can have an impact on how you feel and isn't ideal. For me the key thing is to inject my breakfast insulin before I set foot out of bed, because once my feet touch the floor my liver starts pumping out glucose and my insulin is on the back foot trying to catch up with it. So I need to get it in there before I even sit up in bed. Then I make my breakfast and a coffee and get washed and dressed and eat my breakfast when my levels are mid 5s and starting to come down. If I wake up in the 4s, it might just be 10-15 mins which is why I make breakfast and have it sitting waiting (I have yoghurt and berries and seeds, so nothing spoiling) whereas if I wake up and my levels are 6 or above it will take longer and if above 10 it can be over an hour even with Fiasp. Sometimes I take my breakfast with me if my levels don't come down in time, but other times when it isn't convenient to do that you obviously have to accept that your levels will just spike higher that day. Diabetes management isn't perfect. You have to do your best in the circumstances you are in and fit it in with your life as best you can.
 
I am really shocked that you have been managing this on your own for 2 years. This really is shocking and you need specialist support. Please put pressure on your GP to refer you. They are not following protocol to treat you in house!
 
yeah I just have had a bad few weeks with staying with my parents again and it is frustrating because I didn’t understand why I was being so snappy and moody and I have been getting really angry with myself when I do this I have never had a sort temper I used to be very calm and collected every one close to me has said that this is not the normal me and now I feel like I have to start it all over again because I tried to do it as best as I could but wish I had the guidance that I am going to get now and yes the up and down readings are starting to take it’s toll
 
rebrascora said:
I am really shocked that you have been managing this on your own for 2 years. This really is shocking and you need specialist support. Please put pressure on your GP to refer you. They are not following protocol to treat you in house!
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Yeah but now I have got the specialist so hopefully I can get on top of this as I want to control it not let it control me
 
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