Type 1 For 46 Years

[Diabetic46years]

I joined this Forum last night and am hoping by engaging with other people who have diabetes this life-long battle of managing diabetes may become a bit easier. It has always been an uphill struggle, and I realise it needn't be. My main issue is getting what I call the tricky trio of insulin, diet and exercise right. I have the lows when I ramp up my excercise and the highs when I drop my insulin and my diet is a nightmare because a lot of my eating is driven by low blood sugar and not by a genuine hunger. So this finds me with a permanent tyre around my midriff which gets me down. Anyway, I will keep watching the Forum, and hopefully, by engaging with the experiences and insights of other Type 1 diabetics, I'll find it easier to manage this. Mainly, I am interested in people who have had diabetes as long as I have.

 

[Robinredbreast]

I joined this Forum last night and am hoping by engaging with other people who have diabetes this life-long battle of managing diabetes may become a bit easier. It has always been an uphill struggle, and I realise it needn't be. My main issue is getting what I call the tricky trio of insulin, diet and exercise right. I have the lows when I ramp up my excercise and the highs when I drop my insulin and my diet is a nightmare because a lot of my eating is driven by low blood sugar and not by a genuine hunger. So this finds me with a permanent tyre around my midriff which gets me down. Anyway, I will keep watching the Forum, and hopefully, by engaging with the experiences and insights of other Type 1 diabetics, I'll find it easier to manage this. Mainly, I am interested in people who have had diabetes as long as I have.

Hello and welcome, 46 years is a long time isn't it. Lovely to meet you, this is my 29th year, so just a whipper snapper compared to you, you must of seen lots of changes and with the highs and lows of diabetes.
I will tag @daisy1 who will provide some helpful information.

 

[Juicyj]

Hello and welcome @Diabetic46years good to hear from you.

Can you tell us more about your diabetes management ?

I also struggle with going low when running/cycling so have to take care with reducing my basal which I can do on the pump, also testing whilst exercising is important to ensure I can prevent a hypo if going low, heat also doesn't help as I become more sensitive to insulin, I love to exercise though, it's good for releasing serotonin and staying healthy as well as improving BG levels.

 

[sninge]

Hi, again im just a whipper snapper at just 34 yrs type1! Like you the exercise balance has always driven me mad. But I have in the last week found a formula that seems to be working for now!! I eat quite low carb at about 50 a day. I eat my fruit and double cream in the mornings before an hrs walk ( at a good pace ) but dont take a bolus for the fruit and now instead of 4-5 jelly babies my sugars stay stable and in the eve after dinner with approx 20-30 carbs i do a 35 min workout on the trampoline again with no bolus at dinner, prob wait about half hr, 45 mins after eating and watch for the rise to start on my libre!! So far its working and im starting to lose a little weight as a bonus!!

 

[himtoo]

hi @Diabetic46years
welcome to the forum !!
i am 2 months short of 46 years T1D.........and the balance between the trio you mentioned does seem a bit more difficult to me as i get older......but we didn't have as many tools in the fight against BG spikes and lows long ago............the regime was much more structured but since the advent of pumps and CGM's and MDI .....you would think it would be easier.....

I try to walk at least 3 -4 times per week and lower my basal rate a couple of hours before starting and usually this seems to do the trick.............but no 2 days are ever exactly the same.

 

[porl69]

Snap.....April 1st 1972. I used to have horrendous control.....lost an eye and am stage 4CKD. .Am now, I would say, around 90% in target. Still get the occasion mess up BUT very rare now

 

[Diabetic46years]

Gosh, I am overwhelmed at the replies to my post. Thank you. So I guess it's not necessarily a lonely place. I am based in South Africa and though we do have a diabetes association, it is not as active or sophisticated as this UK forum. I'll keep watching this space.

 

[Alison54321]

Hello, I'm just coming up to 42 years, though I can't remember the exact date, I think it was late summer/early autumn of 76.

Compared to then, the technology available to control diabetes has moved forward massively. When I think back I am amazed I survived.

I have fairly good control these days, but it has been done by being very organised, in terms of having a schedule of when to eat, how much, and everything, which is far from my natural state, but I've just had to force myself to do it, because otherwise it's all just too unpredictable, and I was, like you seem to be doing, always responding to what was happening to my blood sugar, rather than having any control over it.

I've been lucky to get access to freestyle libre, in the last few months, which has given me a real sense of being far more in control, which is a very nice feeling after so long.

Are you on injections? it does sound as if you are, I've never got anywhere near being offered a pump, as I never seemed to fulfill any of the criteria. Also how are you monitoring your blood sugars?

 

[Diabetic46years]

Yes, the technology has changed drastically. When I was first diagnosed I was testing my urine using a bunsen burner and a test tube. To get a blood sugar result took a few days in the lab. So the 12-second blood sugar test I take is amazing. But, it doesn't make it easier. I think I test to much, and am trying to test less. I am on injections - Lantus the long-acting and Humulog the short acting. It's an effort to balance them. You're right, being organised is very important, and having a routine. I've had avastin injections into both my eyes, and argon laser treatment. My kidney tests recently showed protein, not a good sign. But, one cannot collapse. 42 years is good going. Well done!

 

[Alison54321]

Yes, the technology has changed drastically. When I was first diagnosed I was testing my urine using a bunsen burner and a test tube. To get a blood sugar result took a few days in the lab. So the 12-second blood sugar test I take is amazing. But, it doesn't make it easier. I think I test to much, and am trying to test less. I am on injections - Lantus the long-acting and Humulog the short acting. It's an effort to balance them. You're right, being organised is very important, and having a routine. I've had avastin injections into both my eyes, and argon laser treatment. My kidney tests recently showed protein, not a good sign. But, one cannot collapse. 42 years is good going. Well done!

Wow, a bunsen burner and a test tube, I'm quite jealous. By 1976 I still had to test urine, but there were tablets that you put in it to see what colour it was, not a bunsen burner.

Before I got the freestyle libre I was doing loads of blood tests every day. One of the things I've found most useful about freestyle libre is the daily pattern graph, which maps out blood sugars over 7 days, 14 days, etc. It has a black line, which is, I believe, the median, that is the most useful graph I have ever had access to.

I don't know if there is any thing out there that can do that without a freestyle libre.

Anyway, hopefully you'll get lots of useful advice here.

 

[himtoo]

Hello, I'm just coming up to 42 years, though I can't remember the exact date, I think it was late summer/early autumn of 76.

Compared to then, the technology available to control diabetes has moved forward massively. When I think back I am amazed I survived.

I have fairly good control these days, but it has been done by being very organised, in terms of having a schedule of when to eat, how much, and everything, which is far from my natural state, but I've just had to force myself to do it, because otherwise it's all just too unpredictable, and I was, like you seem to be doing, always responding to what was happening to my blood sugar, rather than having any control over it.

I've been lucky to get access to freestyle libre, in the last few months, which has given me a real sense of being far more in control, which is a very nice feeling after so long.

Are you on injections? it does sound as if you are, I've never got anywhere near being offered a pump, as I never seemed to fulfill any of the criteria. Also how are you monitoring your blood sugars?

are you in the Uk @Alison54321-- if you are i might be able to offer some help on pumps.

 

[EllieM]

I don't know if there is any thing out there that can do that without a freestyle libre.

Dexcom??? (Am currently contemplating this because freestyle libre fundamentally disagrees with my body).

I've been T1 since 1970 (no idea which month), with some periods of horrendous control (hello teens pre glucometers) and tend to run along now with HbA1Cs between 7 and 8. I can go lower (and did before the libre stopped working for me) but then I lose hypo awareness. I've been offered a pump in the past but my control's never been bad enough for me to want to take it up.

I can totally empathise with the being forced to eat for hypos - I was recently ordered to increase my blood sugar by my diabetic specialist and interestingly after 3 months my HbA1C was the same (52 or 6.9) but I'd gone down to one (mild) hypo per week. I realise others need to keep their HbA1C lower but for me it's a pretty good compromise - losing hypo awareness just isn't an option. (but dexcom with an alarm, hmm... maybe)

The treatments available for T1 are just amazing compared to when I was diagnosed , but I've been waiting for that "cure in ten years" since I was 8 years old and have no real hope of it happening in my lifetime. (But for young T1s, it's a definite possibility.)
I found this forum a year ago when I was first having woes with the libre, it's nice to get feedback from other diabetics.

I've been really lucky, mild (as yet no need for treatment) on again off again background retinopathy is my only obvious diabetic complication, though I've probably got a slightly more worn out body than a non-diabetic person of my age.

And I've experienced T1 treatment in 3 countries : UK, Australia and now NZ.....

 

[philchap1]

Welcome Alison, into my 51st year as a type 1, have lost hypo awareness due to tight control ( you can't win lol ) currently on a Accu chek insight pump will discuss a cgm with my consultant because of the unawareness, you will find a wealth of knowledge on this forum.

 

[kitedoc]

Hi @ Diabetic46years
Through a great deal of luck, good social and health professional support and living upside down to you in the southern hemisphere in a sun-burnt land called Australia or Oz for short, (please take a breath !) I reached the 51 year mark on insulin last October.
The most important thing I can impart though is that by the 45 year mark my diabetes control was causing me major problems, and that was on Novorapid before meals and for correcting highs of 4 to 6 shots per day and levemir (long-acting morning and night.
Nighttime hypos were troubling and affecting my capacity to keep holding a driver's license and hence risking curtailment of my working life and general quality of life. Switching to an insulin pump has made things so much better, much fewer hypos, much better control. And my quality of life is back.
The 3 month tests, HBA1Cs have been running at about 6.5 % ( new units - 48) . Of course each measure is an idea of the past 3 months and up sand downs are never absolutely perfect !!
I retired 3 years ago, but not for reasons to do with diabetes or my health in general.
Weight gain did become an issue in the past 6 months - largely because I became interested in upping my intake of omega 3 fatty acids and unfortunately sardines with the best quantities of omega 3 tend to be in oil, which adds calories +.
I have had to discipline myself, keep the oily fish to a maximum of 3 times weekly and I skip lunch - something which the pump allows for easily. My exercise regime is steady and working well I think.
Having hobbies and interests is also good for my health - kite flying being a major one as my username suggests.
A longer term issue has been the unsettling feeling at about the 10 mmol/l level of feeling hungry, almost as though I am feeling hypo. The temptation to eat is high, and protein does not always ease that hunger. Having to test blood sugars to ascertain what is going on is the key but oh the sore fingers !!
On a pump I do have the option to attach a blood glucose monitoring gadget with sensing needle into my skin which will trace out my continuous blood sugar reading, will just 2 finger prick readings per day. Continuous Glucose Monitoring (CGM) is expensive and in Oz only subsidised for under 18 years old type ones.
You would need to see what what applies in UK by looking on site. You can also read about other devices for use even without use of a pump.
I hope that the above helps. Welcome aboard and ask away !!

 

[Alison54321]

are you in the Uk @Alison54321-- if you are i might be able to offer some help on pumps.

I am. My problem, with pumps, is that all the life stages for people with type 1 diabetes, where pumps were the obvious answer, are ones that I went through before they were available. So I've done the being young and not in control, I've done the being pregnant, and so the only stage left is the being older with serious complications, but I'm not that keen on that one.

So in recent years I just haven't been enough of a priority, but keeping good control takes up a lot of my time. My night time blood sugars are very unpredictable, I can see that now with the freestyle libre, so there may be a case to build upon there.

 

[himtoo]

I am. My problem, with pumps, is that all the life stages for people with type 1 diabetes, where pumps were the obvious answer, are ones that I went through before they were available. So I've done the being young and not in control, I've done the being pregnant, and so the only stage left is the being older with serious complications, but I'm not that keen on that one.

So in recent years I just haven't been enough of a priority, but keeping good control takes up a lot of my time. My night time blood sugars are very unpredictable, I can see that now with the freestyle libre, so there may be a case to build upon there.

have a look at this extract to see what applies to you............particularly number of injections per day , fear of hypos , any partial loss of hypo awareness. https://www.nice.org.uk/guidance/ta151/documents/association-of-british-clinical-diabetologists2

also get in touch with the people at INPUT http://www.inputdiabetes.org.uk/ this is a charity run by Type 1's to help people to gain access to latest technology on the NHS. -- they are a friendly bunch ( have met them a couple of years ago ) .

 

[Kalobe]

Wow, a bunsen burner and a test tube, I'm quite jealous. By 1976 I still had to test urine, but there were tablets that you put in it to see what colour it was, not a bunsen burner.

Before I got the freestyle libre I was doing loads of blood tests every day. One of the things I've found most useful about freestyle libre is the daily pattern graph, which maps out blood sugars over 7 days, 14 days, etc. It has a black line, which is, I believe, the median, that is the most useful graph I have ever had access to.

I don't know if there is any thing out there that can do that without a freestyle libre.

Anyway, hopefully you'll get lots of useful advice here.

Yes, the technology has changed drastically. When I was first diagnosed I was testing my urine using a bunsen burner and a test tube.

 

[Kalobe]

I’ve been type 1 for 42 years, I don’t miss the test tubes or having to boil up the syringes or get the needles sharpened!

 

[porl69]

I’ve been type 1 for 42 years, I don’t miss the test tubes or having to boil up the syringes or get the needles sharpened!

Aaargh no one told my parents that you could get them sharpened

 

[Diabetic46years]

Hi @ Diabetic46years
Through a great deal of luck, good social and health professional support and living upside down to you in the southern hemisphere in a sun-burnt land called Australia or Oz for short, (please take a breath !) I reached the 51 year mark on insulin last October.
The most important thing I can impart though is that by the 45 year mark my diabetes control was causing me major problems, and that was on Novorapid before meals and for correcting highs of 4 to 6 shots per day and levemir (long-acting morning and night.
Nighttime hypos were troubling and affecting my capacity to keep holding a driver's license and hence risking curtailment of my working life and general quality of life. Switching to an insulin pump has made things so much better, much fewer hypos, much better control. And my quality of life is back.
The 3 month tests, HBA1Cs have been running at about 6.5 % ( new units - 48) . Of course each measure is an idea of the past 3 months and up sand downs are never absolutely perfect !!
I retired 3 years ago, but not for reasons to do with diabetes or my health in general.
Weight gain did become an issue in the past 6 months - largely because I became interested in upping my intake of omega 3 fatty acids and unfortunately sardines with the best quantities of omega 3 tend to be in oil, which adds calories +.
I have had to discipline myself, keep the oily fish to a maximum of 3 times weekly and I skip lunch - something which the pump allows for easily. My exercise regime is steady and working well I think.
Having hobbies and interests is also good for my health - kite flying being a major one as my username suggests.
A longer term issue has been the unsettling feeling at about the 10 mmol/l level of feeling hungry, almost as though I am feeling hypo. The temptation to eat is high, and protein does not always ease that hunger. Having to test blood sugars to ascertain what is going on is the key but oh the sore fingers !!
On a pump I do have the option to attach a blood glucose monitoring gadget with sensing needle into my skin which will trace out my continuous blood sugar reading, will just 2 finger prick readings per day. Continuous Glucose Monitoring (CGM) is expensive and in Oz only subsidised for under 18 years old type ones.
You would need to see what what applies in UK by looking on site. You can also read about other devices for use even without use of a pump.
I hope that the above helps. Welcome aboard and ask away !!

Hi Thanks for your message and insights. The weirdness of how one feels at particular blood glucose levels. And yes, that 10mm hunger, I know it well. Very glad to have heard from someone that has passed my 46-year mark of living with Type 1 diabetes. State funding is a big issue in South Africa, so I end up paying for a lot of what I need out of my own pocket. You sound well and importantly, positive, so, thanks for the inspiration. Chat soon.