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Hi
- Thread starter Hooky93
- Start date
- Status
Thanks for the welcome
It's recently dawned on me, approaching 30, that I don't actually know any fellow type 1 diabetics and thought it was about time I shared experiences with others if it can help or if anybody can help me.
Still learning the navigation of the threads so forgive me if I post in the wrong one
It's recently dawned on me, approaching 30, that I don't actually know any fellow type 1 diabetics and thought it was about time I shared experiences with others if it can help or if anybody can help me.
Still learning the navigation of the threads so forgive me if I post in the wrong one
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome from me too.
Hope you find it as beneficial as I have over the past 4 years, picking people's brains/experience here as well as contributing my own.
How do you manage your diabetes? MDI or pump.... closed loop or manual? Which insulin(s) Libre or other CGM?
How do you manage mentally? We all know it can be a real strain from time to time, so the forum is a good place to sound off when the frustration needs venting, but also somewhere to come and share the little (or big) victories that perhaps "Muggles" don't really appreciate 🙄, but people here do.
Anyway, good to have you on board
Hope you find it as beneficial as I have over the past 4 years, picking people's brains/experience here as well as contributing my own.
How do you manage your diabetes? MDI or pump.... closed loop or manual? Which insulin(s) Libre or other CGM?
How do you manage mentally? We all know it can be a real strain from time to time, so the forum is a good place to sound off when the frustration needs venting, but also somewhere to come and share the little (or big) victories that perhaps "Muggles" don't really appreciate 🙄, but people here do.
Anyway, good to have you on board
Thankyou
Yeah I feel like sharing with like minded people can hopefully benefit my control as I've been quite loose with it over the years. I think unless you go through it you really don't understand, even the medical professionals that I have seen over the years, sure they have the medical knowledge but they don't have that fiesta hadn't experience.
I definitely rebelled against it in my teen years, I had the attitude of not letting it rule my life and didn't want to let diabetes getting in the way of doing anything a "normal" person would be able to do.
As I get older I have realised more and more that if I accept it as a friend its helping me to achieve that "normal" life I want to have.
I currently carb count and inject, I use novorapid on 10 gram to 1.5 unit dose and levemir 20 units at night and 15 on a morning.
I have been using a libre 2 for the past year or so and it's genuinely changed my life, its not without its faults ( try again in 10 minutes is the bain of my life sometimes).
I finally feel like I am on control of my diabetes instead of it controlling me. Sorry for the essay just need to get stuff out haha.
Be interested anybody that reads this that can relate and found them selves in a similar situation.
Yeah I feel like sharing with like minded people can hopefully benefit my control as I've been quite loose with it over the years. I think unless you go through it you really don't understand, even the medical professionals that I have seen over the years, sure they have the medical knowledge but they don't have that fiesta hadn't experience.
I definitely rebelled against it in my teen years, I had the attitude of not letting it rule my life and didn't want to let diabetes getting in the way of doing anything a "normal" person would be able to do.
As I get older I have realised more and more that if I accept it as a friend its helping me to achieve that "normal" life I want to have.
I currently carb count and inject, I use novorapid on 10 gram to 1.5 unit dose and levemir 20 units at night and 15 on a morning.
I have been using a libre 2 for the past year or so and it's genuinely changed my life, its not without its faults ( try again in 10 minutes is the bain of my life sometimes).
I finally feel like I am on control of my diabetes instead of it controlling me. Sorry for the essay just need to get stuff out haha.
Be interested anybody that reads this that can relate and found them selves in a similar situation.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Never apologize for writing a lot. It gives a massive insight into how diabetes affects people and really helps others here relate and feel more normal. We have some members here who actually have a name for their diabetes and a mental image to go with it..... An annoying friend who is a bit demanding, but better to give them the attention they need than ignore them and end up with them kicking off.
Libre was a game changer for many of us and for me it changed my whole mental approach, so I now see my diabetes as a very long running computer game where I try to keep my BG levels in range and work towards beating my personal best Time in Range (TIR). Every once in a while I crash and then I have to start building up a good "score" (% TIR) again. I see it as a challenge rather than a long term health condition.
How do you find NovoRapid now that you have Libre to see the spikes after meals or does it work more quickly for you than the Novo(not so)Rapid that many of us find?
Absolutely love Levemir for it's flexibility. Do you adjust your doses yourself for exercise etc or just keep them fixed according at what your DSN sets them at.
Anyway, lovely to read your story. Going through your teens with D must be incredibly tough and we get parents on here quite often worried sick about their kids going off the rails with their management, so I wonder if perhaps you could offer them some insight or reassurance to them. I was "lucky" to get it late in life and can only imagine the difficulties for both parents and teenagers going through it.
Anyway, make yourself at home here and if you have any particular issues that you need help with, shout up. The forum is a goldmine of practical experience and knowledge which clinicians as you say, have little concept of. Theory is all well and good, but practical day to day living is what counts and we all have our own ways of approaching it. Finding the best option for you with your lifestyle is all that matters, but getting ideas of what to try from others in the same boat really goes a long way to figuring it out.
Libre was a game changer for many of us and for me it changed my whole mental approach, so I now see my diabetes as a very long running computer game where I try to keep my BG levels in range and work towards beating my personal best Time in Range (TIR). Every once in a while I crash and then I have to start building up a good "score" (% TIR) again. I see it as a challenge rather than a long term health condition.
How do you find NovoRapid now that you have Libre to see the spikes after meals or does it work more quickly for you than the Novo(not so)Rapid that many of us find?
Absolutely love Levemir for it's flexibility. Do you adjust your doses yourself for exercise etc or just keep them fixed according at what your DSN sets them at.
Anyway, lovely to read your story. Going through your teens with D must be incredibly tough and we get parents on here quite often worried sick about their kids going off the rails with their management, so I wonder if perhaps you could offer them some insight or reassurance to them. I was "lucky" to get it late in life and can only imagine the difficulties for both parents and teenagers going through it.
Anyway, make yourself at home here and if you have any particular issues that you need help with, shout up. The forum is a goldmine of practical experience and knowledge which clinicians as you say, have little concept of. Theory is all well and good, but practical day to day living is what counts and we all have our own ways of approaching it. Finding the best option for you with your lifestyle is all that matters, but getting ideas of what to try from others in the same boat really goes a long way to figuring it out.
Tdm
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Nice to see you here. Just a thought, have you been on DAPHNE or similar,cos a lot of pepple say that a carb counting course is a good way to meets t1s is the flesh. Still waiting for mine.
I agree re cgm, it was horrible finger prickjng in the couple of months after i was put on insulin but hadn't got my diagnosis or cgm. Cgms are tital game changers!
I agree re cgm, it was horrible finger prickjng in the couple of months after i was put on insulin but hadn't got my diagnosis or cgm. Cgms are tital game changers!
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Yes, DAFNE was a great experience for meeting other Type 1s and learning from each other. It was interesting to see how different we all are, as well as the similarities and sharing the frustrations of trying to manage it. If you haven't done a DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is, do ask about a referral. Unfortunately Covid created a backlog and meant that many courses were conducted "virtually", but if you can get an "in person" course, I would highly recommend it. It is so much more than just carb counting, but keeping yourself safe in a whole range of every day situations with insulin.... like illness and exercise and alcohol consumption and eating disorders and even drugs. The concept is to be non judgemental about people's lifestyle choices or personal problems but to help them manage their diabetes more safely with or without these issues. Thinking about it, they really should run DAFNE courses for teenagers as I am sure it would be hugely beneficial.
Love that idea of it being an "annoying friend" haha that's brilliant.
In all honesty I gave up finger pricking for a long time which looking back was crazy to have no idea of my levels, now it feels strange if I take my libre off when it's finished and leave it off while I wash etc before I put the new one on
I do similar now aswell, it's such a good feeling when your time in rnage score goes up
I have found novo rapid tricky too, it's good for me when my levels are good bit if I spike it will take a long time for it to bring me back to a reasonable level ♂️ god knows what my levels where like before I was monitoring again.
I've not heard of that course before, I'll be sure to look into it, only kind of course I've ever been to about was many moons ago when I was quizzed about my diet and how many carbs were in a slice of bread, I didn't go back after one...
In all honesty I gave up finger pricking for a long time which looking back was crazy to have no idea of my levels, now it feels strange if I take my libre off when it's finished and leave it off while I wash etc before I put the new one on
I do similar now aswell, it's such a good feeling when your time in rnage score goes up
I have found novo rapid tricky too, it's good for me when my levels are good bit if I spike it will take a long time for it to bring me back to a reasonable level ♂️ god knows what my levels where like before I was monitoring again.
I've not heard of that course before, I'll be sure to look into it, only kind of course I've ever been to about was many moons ago when I was quizzed about my diet and how many carbs were in a slice of bread, I didn't go back after one...
Ciara DUK
Supporter Care Advisor
Hi, welcome to the Forum - glad to see you've been managing to navigate so well so far (I'm also new to the platform and it does take a bit of getting used to!).
Thanks for sharing your story, it's always great to know when members are feeling better about managing their diabetes.
It's great that you'd would like to get to know others with Type 1, and hopefully you'll get to know others with similar experiences through the Forum
If there's anything you need help with, please do let us know! 🙂
I attended my local DAFNE (Dose Adjustment For Normal Eating) equivalent course a few years back, 12 years after diagnosis. It was very useful for me but mainly because it was a hurdle I had to jump to get a pump. As @rebrascora mentioned it was also a chance to talk to other people with Type 1 and put my experience into context. However, it was a lot of time (4 hours a week for 5 weeks) to spend relative to what I learnt which was mainly that we are all different (and that they "simplify" the carb counting so much that, as an engineer, I had no idea what they were doing only that we came up with the same number at the end).
I wouldn't say it was a waste of time but I wish they had a "refresher" course for long timers.
I wouldn't say it was a waste of time but I wish they had a "refresher" course for long timers.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I have to be honest that I have abandoned almost all the principles they taught us at DAFNE, mostly because they don't really apply to my low carb way of eating (it does kind of suggest that in the title ie "Normal Eating") but I still got a lot out of it and I think the biggest thing was gaining the confidence to adjust my basal dose and the experience of meeting other Type 1s. I think perhaps if I had more experience before I went on the course, I maybe wouldn't have got so much out of it.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Hooky93
Glad that you have found us, and good to read your experiences.
As you say the sensors we have now are a game changer, showing us what is happening between meals. I was amazed at what prompted a big spike, and the Libre also got me into pre-bolusing for meals, helping me to work out the appropriate timings of my Novorapid.
I look forward to hearing more from you.
Glad that you have found us, and good to read your experiences.
As you say the sensors we have now are a game changer, showing us what is happening between meals. I was amazed at what prompted a big spike, and the Libre also got me into pre-bolusing for meals, helping me to work out the appropriate timings of my Novorapid.
I look forward to hearing more from you.
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Welcome to the forum @Hooky93
Glad you have joined us!
Completely agree about access to continuous data - when I started using sensors it made me realise just how often I tried to second guess things between fingerpricks and make adjustments hoping that they would meal a more in-range result when I next checked. Basically making a lot of adjustments based on no information other than gut feel and experience. With sensors, in a weird way it too the pressure off the numbers, because they were what they were and I couldn't 'heat' them. So it became more a question of trying to improve my results based on the information, than trying to improve my information based on guesswork
I wrote this based on my silliness many years ago
www.everydayupsanddowns.co.uk
Glad you have joined us!
Completely agree about access to continuous data - when I started using sensors it made me realise just how often I tried to second guess things between fingerpricks and make adjustments hoping that they would meal a more in-range result when I next checked. Basically making a lot of adjustments based on no information other than gut feel and experience. With sensors, in a weird way it too the pressure off the numbers, because they were what they were and I couldn't 'heat' them. So it became more a question of trying to improve my results based on the information, than trying to improve my information based on guesswork
I wrote this based on my silliness many years ago
Uncertainty Tennis
Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Oh Mike! I laughed until I cried reading your "uncertainty tennis" blog and so totally relatable. I can still play it with Libre occasionally, of course with less skill and flair involved. Like the other day when I lost control of my diet and binged and just kept eating and injecting without really knowing how many carbs I was having (I kept track of the insulin but the stacked doses were all total guesswork) and then I threw some exercise into the mix to really up the ante, at which point the Libre threw in the towel (permanent "try again in 10 mins" because it was totally bamboozled... can't blame it) and I was playing blind until I crashed and had to get the finger prick kit out. Thankfully the Libre came back up once I stopped the nonsense but I had to wait hours for a stewards enquiry whilst the whole mess levelled out and the final result was announced. Think I lost that one 🙄Welcome to the forum @Hooky93
Glad you have joined us!
Completely agree about access to continuous data - when I started using sensors it made me realise just how often I tried to second guess things between fingerpricks and make adjustments hoping that they would meal a more in-range result when I next checked. Basically making a lot of adjustments based on no information other than gut feel and experience. With sensors, in a weird way it too the pressure off the numbers, because they were what they were and I couldn't 'heat' them. So it became more a question of trying to improve my results based on the information, than trying to improve my information based on guesswork
I wrote this based on my silliness many years ago
Uncertainty Tennis
Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.
It is a long time since I had a really good belly laugh, so many thanks for giving my morning such a lift. You captured the situation absolutely perfectly and hilariously!
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Awwww thanks @rebrascora - glad it gave you a chuckle. 🙂
And well done for running rings around your Libre. Pays to put our robot overlords in their place every once in a while, and let them know they still can’t keep up with us at times
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @Hooky93 and welcome to the forum 🙂
I also find that I get "try again in 10 minutes" on the Libre just when it's vital that I know what my blood sugar is doing - and that when it spikes the Novorapid turns into Novoveryslow.
@everydayupsanddowns - just read your blog post and every time I go to bed I face the issue of "I could quite possibly expect to rise, or fall, OR stay perfectly level overnight." Drives me nuts trying to work out how many biscuits I should eat, based on the last few nights, the last time I ate whatever I just ate, and whether there happens to be an r in the month ... 🙄
I also find that I get "try again in 10 minutes" on the Libre just when it's vital that I know what my blood sugar is doing - and that when it spikes the Novorapid turns into Novoveryslow.
@everydayupsanddowns - just read your blog post and every time I go to bed I face the issue of "I could quite possibly expect to rise, or fall, OR stay perfectly level overnight." Drives me nuts trying to work out how many biscuits I should eat, based on the last few nights, the last time I ate whatever I just ate, and whether there happens to be an r in the month ... 🙄
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