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explaining what it's really like to live with Type 1

Type One is a mysterious disease (condition) I've had it since I was 16, 69 years ago. I've had Medtronic pumps, now a 780G with sensors. The Sensor 3 was inaccurate to the point of madness (saying 8.4 when I was 4.2 and visa versa) Sensor 4 is stable and accurate. When I was on 3, I had to BG test about 8 x a day to avoid high or low disaster. With Sensor 4, once a week. Medtronic 780 pump is astonishing good at night. (8am always between 5 and 6. Daytime very different. very high after lunch and very spiky. The 780 gives loads of corrective doses which never lower my daytime blood sugar levels. I used to eat 20gm of nut muesli every morning with kefir and my BG would shoot up as if I was eating pure sugar. Lunch maybe one slice of wholemeal toast and some cheese, with 3 units and then another spike up to 12 or 14. The only way down was to tell the pump I had eaten another 25gms of carb and it would give a couple more units. To reduce the spikes, I now don't eat breakfast or take a bolus and everything stays calm between 9.30pm and 12.00 before lunch. Then the spikes start again. Today the I told the pump I was eating 20gms (1 piece of toast) and it gave me 1.5 units. by BG shot up and the pump automatically gave me 1.5 extra units in 9 small increments. My BG went up till 3.00pm when I told it I had eaten another 12gms (which I hadn't to get the BG down. For 12mgC it gave my 1.525units. Now at 5.30, my BG has gone down to 7.2. I will change the ratio tomorrow to give me 3.5units for 20 gms of carb.
I find the ratios change quite a lot and I need to pay more attention to adjusting (with care) but more often. My last 30 days average is 80% in range in a very stressful period. Normally it's 82% in range. Total daily insulin 30.5. Carbs about 100 a day. Not much exercise recently. Just trying to live another year to get to 70 years with Type One and happy.
 
I am so impressed with all you type one diabetics. I've had it 69 years (since I was 16) and have very few of the hassles many of us get. My eyesight's getting a bit worse (wrinkles at the back of my left eye disturbs the focus there a bit), but very little macular degeneration in either eye. Can walk 5 miles (but not too often). One allotment. One choir. Busy with lots of things and looking forward to more. This most important thing is being with my wife for 43 years and we smile together 20 times a day. Love is the greatest healer. Going to put up an exhibition of some of my now very old photographs (taken 1967-69) in the next few weeks.

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I wrote a poem to my Type 1...

The house is dark, but he's still there
He reaches out, he doesn't care
He hides his face, for all to see
But no-one spots him... only me.

He whispers to me, don't you dare
He spies the problems, sets his snare
With needles sharp and numbers high
He makes me pause and wonder why.

In darkness deep or morning light
He tests my strength, provokes the fight
While sweetness swings like ocean waves
Demanding all the care he craves.

Through birthdays, parties, work and play
He never takes a holiday
A shadow cast on every meal
Reminding me that he is real.

When others sleep, he wakes me still
An offering I must fulfill
But though he brings both pain and strife
He's taught me how to value life.

He's always with me, tho' no friend
He'll be there with me, 'til the end.
 
Rob_UK said:
I wrote a poem to my Type 1...

The house is dark, but he's still there
He reaches out, he doesn't care
He hides his face, for all to see
But no-one spots him... only me.

He whispers to me, don't you dare
He spies the problems, sets his snare
With needles sharp and numbers high
He makes me pause and wonder why.

In darkness deep or morning light
He tests my strength, provokes the fight
While sweetness swings like ocean waves
Demanding all the care he craves.

Through birthdays, parties, work and play
He never takes a holiday
A shadow cast on every meal
Reminding me that he is real.

When others sleep, he wakes me still
An offering I must fulfill
But though he brings both pain and strife
He's taught me how to value life.

He's always with me, tho' no friend
He'll be there with me, 'til the end.
Click to expand...
Great poem! You nailed it!
 
Wake up and take insulin.
Have breakfast and take a lot of insulin , 27 to 32 on average.
11 o'clock eat small snack.
12.30 lunch, take insulin.
Afternoon may have snack about 4.
17.30 evening meal and insulin. Insulin 8 to 10 dependent on meal.
20.00 2 sweets because it good.
22.30 heading for ground zero so jelly babies,
Read in bed.
No special diets used,
Exercise can disrupt.
Periodically it all goes pear shaped as in high or low but can normally correct without drama.
Always got Maynard jelly babies in my pocket or bag when out and about.
 
I'm new to this site and have been reading the entries here. I was diagnosed in my early twenties and understand the advantage of not having it as a child. I have been type 1 for over 40 years and am now a youthful 64. Eyes are pretty good generally and I feel ok.
My major 40+ year study with living with this is that it's a royal pain. I can complain that predicting fast acting insulin is difficult at best. If I have carbs and take Humalog to counter act it can take more than 4 hours sometimes to see the brakes coming on. This has on numerous occasions caused me to stack humalog shots in an attempt to stop the 4 hour rise from 110 to 350. Then I can get a sharp rapid drop too many hours after I took the shot. I have just switched to Lyumjev as it proclaims to allow better freedom with faster response time.
This unpredictable nature of manually injecting affects everyday of my life and I just try my best to not make it an issue for anyone else I'm with.
 
EvanBCalford said:
I'm new to this site and have been reading the entries here. I was diagnosed in my early twenties and understand the advantage of not having it as a child. I have been type 1 for over 40 years and am now a youthful 64. Eyes are pretty good generally and I feel ok.
My major 40+ year study with living with this is that it's a royal pain. I can complain that predicting fast acting insulin is difficult at best. If I have carbs and take Humalog to counter act it can take more than 4 hours sometimes to see the brakes coming on. This has on numerous occasions caused me to stack humalog shots in an attempt to stop the 4 hour rise from 110 to 350. Then I can get a sharp rapid drop too many hours after I took the shot. I have just switched to Lyumjev as it proclaims to allow better freedom with faster response time.
This unpredictable nature of manually injecting affects everyday of my life and I just try my best to not make it an issue for anyone else I'm with.
Click to expand...
Have you considered a pump with automated delivery? It changed my life. Once the pump is acclimated, you just bolus for carbs. It does the rest.The pump knows when you need less basal and backs off….and does micro boluses if it sees you are trending up. I really struggled with MDI for many years. I found it exhausting and often disappointing, despite my hard work.
 
Prancy said:
Have you considered a pump with automated delivery? It changed my life. Once the pump is acclimated, you just bolus for carbs. It does the rest.The pump knows when you need less basal and backs off….and does micro boluses if it sees you are trending up. I really struggled with MDI for many years. I found it exhausting and often disappointing, despite my hard work.
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I am on Dexcom1 Plus and do my own micro bolusing, that isn't my issue. I don't think. My issue is all the variables that can affect insulin absorption. I'm pretty active and eat a wide array of different carbs. Simply put "sometimes it works. sometimes it doesn't . I appreciate your response and thank you. Will consider.
 
EvanBCalford said:
I am on Dexcom1 Plus and do my own micro bolusing, that isn't my issue. I don't think. My issue is all the variables that can affect insulin absorption. I'm pretty active and eat a wide array of different carbs. Simply put "sometimes it works. sometimes it doesn't . I appreciate your response and thank you. Will consider.
Click to expand...
Yeah, sometimes I’m off. But normally I’m pretty steady. I cheer for any who do well with MDI, but it was rarely doable for me. A pump is a lot of work too.

I only bolused for breakfast this morning and never thought about it since. It’s early evening. I skipped lunch. Just checked and BG 125 with last 24 hours 82% time in range. I could never achieve that without my automated delivery and Temp Target that backs up off basal when I exercise. It’s a personal choice for sure. Good luck!
 
@Prancy in the UK to get a pump requires certain criteria. Even if you managed to jump through the many hoops there can then be a waiting list. I have awful problems with steep numbers in the morning. But am not having lots of hypos and my HbAc is good. So chances of a pump are slim to nought apparently. If I gave up and didn’t try so hard I would probably reach the criteria. But maintaining the health I have is more important.
 
becca59 said:
@Prancy in the UK to get a pump requires certain criteria. Even if you managed to jump through the many hoops there can then be a waiting list. I have awful problems with steep numbers in the morning. But am not having lots of hypos and my HbAc is good. So chances of a pump are slim to nought apparently. If I gave up and didn’t try so hard I would probably reach the criteria. But maintaining the health I have is more important.
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I see. Having access to pump treatment is definitely a factor. I’m in US and still struggle with supply issues, though I’m fully covered.

If your A1c is good, that’s awesome. If I could do that, I probably wouldn’t have gone with a pump.
 
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