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

[Willsmith1361]

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so much for reading and for posting if you are able.

all the best !!

 

[Steve 007]

I’ve been type 1 for a year - gall stones damaged pancreas, and to be honest the past 2 and a bit mths the sugars have been all over the place. I admit I’ve had a few choc naughties and sweet desserts but not that many over the time, but lowest sugars have been 8.6 and highest have been Hi according to tester. keytones have been spot on through all this time, and felt well in myself - am due a review on 22 Nov, so hopefully something will happen, I suspect insulin will be changed to quick release rather than slow release, have kept an eating diary all this month for something to compare, and will see what happens, I feel I eat sensibly, even having cut out most of the sweet things I like, but not overly looking forward to the review!!

 

[EllieM]

I’ve been type 1 for a year - gall stones damaged pancreas, and to be honest the past 2 and a bit mths the sugars have been all over the place. I admit I’ve had a few choc naughties and sweet desserts but not that many over the time, but lowest sugars have been 8.6 and highest have been Hi according to tester. keytones have been spot on through all this time, and felt well in myself - am due a review on 22 Nov, so hopefully something will happen, I suspect insulin will be changed to quick release rather than slow release, have kept an eating diary all this month for something to compare, and will see what happens, I feel I eat sensibly, even having cut out most of the sweet things I like, but not overly looking forward to the review!!

Welcome to the forums.

Most long term T1s find quick release insulin essential to handle carbs in meals, though some people do manage on a mixture of slow and fast acting insulin. . My guess is that you may still have some insulin production and your team were hoping that long acting would be enough? (Disclaimer I am not a doctor and that is not a diagnosis). You might want to have a look at the T3c forum and see if you find any of the stories familiar, as T3c is diabetes caused by damage to the pancreas.

Type 3c (Pancreatic) Diabetes

Forum to ask questions, find support and share experiences with people with Pancreatic Diabetes (aka Type 3c Diabetes).

www.diabetes.co.uk

My advice would be not to fear the appointment. They will be able to adjust your treatment to give you better diabetic control. Do you have access to a cgm (eg libre), by the way? That is another thing that your clinic can help you with.

Once more welcome.

 

[Steve 007]

Thanks for the Type 3C link, very helpful and reassuring

 

[glenmoray]

Unfortunately being between the two lines does not prevent complications. I have also experienced what you are writing about and it is confusing and a real pain in the a-- but life goes on.
I have every complication you can think of practically, my liver is still ok more or less. I have been a Type 1 since 1960, I was 4. I became visually impaired in my early 20s, but I can still partially see from my left eye. I started with gum disease in my mid-twenties and now have no upper teeth and a bridge on the bottom. My kidneys started malfunctioning in my late 30s and are now about 15% but I am not yet on dialysis. My heart diesease started at 50 and on July 10. 1010, the stent they had inserted because the heart surgeon thought a triple bypass was too risky blew causing a major heart attack. I was told 3 mornings in a row I was going to die, but I am still here having to worry how much insulin and carbs to have. I have fastidiously taken care of myself all my life and I am still here struggling. And I was told you could live a perfectly normal life.

Good morning my beautiful friend! I hope that you are very well today!
You do know that I am going to write a whole thesis on this topic... I can visualize the full 150 pages dissertation

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so much for reading and for posting if you are able.

all the best !!

ive had Type 1 diabetes now 45 years. Looking after your diabetes today is fantastic with glucose pens that log your units of insulin your giving, Insulin Pumps, blood glucose test machines, sensors which communicate with your pump or App to tell you how many units of insulin to give. We have yearly eyes tests to check for Glaucoma and if your driving DVLA check your eye sight for tunnel vision. There’s a week long course Type 1 diabetics can do called the DAFNE course where a diabetes Nurse, A dietitian and a doctor explain your diabetes and diabetic control in detail. I’ve done this course 30 years after I was diagnosed as a type 1 diabetic. I remember the first day of the course and I walked into the room and saw a load of breakfast bowls and cereals in front of me. I was told too pick a bowl similar to what I use at home and pour into it a cereal I normally have in the morning . I normally have Cornflakes so poured the amount I normally have. The dietitian then weighed the cereal and started laughing and asked me roughly how many carbs I have for my breakfast. I replied about 30g. She replied to me that I had poured 105 grams of carbs into the bowl and bowl sizes can deceive the amount you actually eat. So it was drummed into us to weigh the bowl empty then add 27 g of carbohydrate ( Cornflakes ) . We have too arrive on day starved so they could workout what our long acting insulin ratio ( baseline glucose level and we all had a private session with the Doctor so we could talk to him about problems we did not want to discuss as a group. The DAFNE course is for every Type 1 Diabetic newly diagnosed and people like me. I also believe you can claim to do this course and be paid for it. The course nurse has the forms. When I was first diagnosed back in February 1977 I was 17. I ended up in Hospital for 2 weeks. I was given 3 glass syringes and 6 stainless steel needles. I was shown how to sterilise the needles and syringes and store them in a container filled with industrial Methylated Spirits. We also back then used cotton wool balls soaked in industrial methylated spirits to clean the injection site. Back in 1977 we had no blood glucose test machines besides the blood taken when I went to see my Diabetic Consultant. I was given a urine test kit which contained urine test strips, a test tube and a pipette. If I remember right it was 5 drops of urine to 10 drops of water. Then drop the test tablet into the urine mixture. After a minute or so fizzing blue colour meant No sugar in my urine, Green meant up to 1% glucose in my urine and yellow/ orange meant 2-3% sugar in urine.
I caught Covid 19 in the First wave in April 2020 and ended up having Covid Pneumonia. in intensive care being ventilated for 21/2 Months. I woke up on the 4th June unfortunately I ended up with long Covid which has effected my mobility, my balance, my short term memory and I cannot concentrate anymore. In December 2020 I had to retire due to I’ll health. My glucose levels went from normal 6-8 mmol to 25 mmol and higher. My diabetic consultant said to me a insulin pump would be beneficial for me. They had too wait for NICE approval and I was shown 4-5 different insulin pumps. When NICE approval was obtained I was asked which insulin pump I would like. My wife looked at all the pumps and thought the Medtronic MiniMed 780 G would be ideal for me and on April 4th 2022 I was connected too the pump. I had to use the Abbotts Libre Sensor 2 to start with but my Glucose levels fell from 25 mmol to 7 mmol within a few days. On July 4th 2022 I was called back to the clinic to pick up my Medtronic Guardian 4 glucose sensor. This connects directly with the Medtronic MiniMed 780G. So now my Guardian 4 gives a glucose reading to my pump and alters my glucose levels to keep my Basel glucose level steady. The last thing I noticed with using the pump and guardian 4 sensor is my insulin demand has fallen and I’ve lost around 5 Stone in weight. I keep to within normal glucose levels now 95% of the time. Diabetes care today is fantastic compared too 1977. I get my feet checked, bloods checked, my eyesight checked and my weight and all my pumps readings are sent to my Diabetic Consultant and Diabertic nurse via the Medtronic Care Link App. I hope you enjoyed my brief story about the care I over the last 45 years. Today we are so lucky we new pumps, equipment and diabetes care improving every day.

 

[DF118]

Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

Thank you for this .Such a very good description of what we all cope with although it has changed for the better in the last 50 years I’ve been living with it !

 

[deb8ken]

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so much for reading and for posting if you are able.

all the best !!

I could NOT keep a Tamagotchi alive .. this diabetes is just the real life Tamagotchi .

 

[JMoli]

On a good day it’s totally manageable, good days can span weeks and you feel pretty good about how you manage this. Then along comes a cold, a hormone fluctuation, stress, weather change, random insulin requirement change and then you can feel really despondent. It can be exhausting, keeping an eye on numbers all day long and unless someone has T1 they will never grasp how challenging our lives are. They think we just inject and eat but the injecting is the easy part. But we are pretty amazing for handling all of this and stronger for getting through all the rubbish days. I’d love to have the life I had back, the spontaneity, but I know I’m not alone and try to find the funny side in the ridiculousness of this disease

 

[A17]

I'm totally with you on this. Every day is an up hill struggle. Just because I look ok I might not be. My BG fluctuates so much, and since I had COVID last month, everything has gone haywire again. It's exhausting.

 

[A17]

Menopause, don't start me on that one !!! Nightmare...

 

[miahara]

It is a bit of a pain in the bum, or tum, depending on where one injects and having constantly to be thinking about carb intake and how many units to inject. It's just a way of life - and hopefully a long one. I get really fed up at times, but keep myself motivated by looking at my time in range and telling myself "That wasn't too bad yesterday, I'll improve on it today." And sometimes I do improve.

 

[Down-Jai 001]

Hi
Every day is a new day to improve since I 'm using Libra 2 lifestyle sensor. I could control B.G better with yhe combination of diet exercise it's working . Hab1c was 7.5% 6 months ago now 7.2%.
There is else come up: couldn't eat direct carbs. If I have it, I will have severe indigestion!!

 

[Blueduck]

I think living with T1 is like being an experiment just when u think things are working something happens to negate all your theories and notes then back to the beginning something that worked well 2 months ago is not working now. Each day is a challenge. Mostly I eat very well, but some days when my blood sugar will not behave I think, sod it, it’s high I’ll eat something bad! Of course I regret that piece of chocolate or crust if white bread, but it did feel good at the time . Then you get a grip, start recording results and your back to experimenting with your body.

 

[Ladybird1]

After 60 years of being type 1, tbh its bogging me down. I hate this constant battle with my body and trying to balance everything. WHY ME is what I keep asking myself

 

[johncon]

ive had Type 1 diabetes now 45 years. Looking after your diabetes today is fantastic with glucose pens that log your units of insulin your giving, Insulin Pumps, blood glucose test machines, sensors which communicate with your pump or App to tell you how many units of insulin to give. We have yearly eyes tests to check for Glaucoma and if your driving DVLA check your eye sight for tunnel vision. There’s a week long course Type 1 diabetics can do called the DAFNE course where a diabetes Nurse, A dietitian and a doctor explain your diabetes and diabetic control in detail. I’ve done this course 30 years after I was diagnosed as a type 1 diabetic. I remember the first day of the course and I walked into the room and saw a load of breakfast bowls and cereals in front of me. I was told too pick a bowl similar to what I use at home and pour into it a cereal I normally have in the morning . I normally have Cornflakes so poured the amount I normally have. The dietitian then weighed the cereal and started laughing and asked me roughly how many carbs I have for my breakfast. I replied about 30g. She replied to me that I had poured 105 grams of carbs into the bowl and bowl sizes can deceive the amount you actually eat. So it was drummed into us to weigh the bowl empty then add 27 g of carbohydrate ( Cornflakes ) . We have too arrive on day starved so they could workout what our long acting insulin ratio ( baseline glucose level and we all had a private session with the Doctor so we could talk to him about problems we did not want to discuss as a group. The DAFNE course is for every Type 1 Diabetic newly diagnosed and people like me. I also believe you can claim to do this course and be paid for it. The course nurse has the forms. When I was first diagnosed back in February 1977 I was 17. I ended up in Hospital for 2 weeks. I was given 3 glass syringes and 6 stainless steel needles. I was shown how to sterilise the needles and syringes and store them in a container filled with industrial Methylated Spirits. We also back then used cotton wool balls soaked in industrial methylated spirits to clean the injection site. Back in 1977 we had no blood glucose test machines besides the blood taken when I went to see my Diabetic Consultant. I was given a urine test kit which contained urine test strips, a test tube and a pipette. If I remember right it was 5 drops of urine to 10 drops of water. Then drop the test tablet into the urine mixture. After a minute or so fizzing blue colour meant No sugar in my urine, Green meant up to 1% glucose in my urine and yellow/ orange meant 2-3% sugar in urine.
I caught Covid 19 in the First wave in April 2020 and ended up having Covid Pneumonia. in intensive care being ventilated for 21/2 Months. I woke up on the 4th June unfortunately I ended up with long Covid which has effected my mobility, my balance, my short term memory and I cannot concentrate anymore. In December 2020 I had to retire due to I’ll health. My glucose levels went from normal 6-8 mmol to 25 mmol and higher. My diabetic consultant said to me a insulin pump would be beneficial for me. They had too wait for NICE approval and I was shown 4-5 different insulin pumps. When NICE approval was obtained I was asked which insulin pump I would like. My wife looked at all the pumps and thought the Medtronic MiniMed 780 G would be ideal for me and on April 4th 2022 I was connected too the pump. I had to use the Abbotts Libre Sensor 2 to start with but my Glucose levels fell from 25 mmol to 7 mmol within a few days. On July 4th 2022 I was called back to the clinic to pick up my Medtronic Guardian 4 glucose sensor. This connects directly with the Medtronic MiniMed 780G. So now my Guardian 4 gives a glucose reading to my pump and alters my glucose levels to keep my Basel glucose level steady. The last thing I noticed with using the pump and guardian 4 sensor is my insulin demand has fallen and I’ve lost around 5 Stone in weight. I keep to within normal glucose levels now 95% of the time. Diabetes care today is fantastic compared too 1977. I get my feet checked, bloods checked, my eyesight checked and my weight and all my pumps readings are sent to my Diabetic Consultant and Diabertic nurse via the Medtronic Care Link App. I hope you enjoyed my brief story about the care I over the last 45 years. Today we are so lucky we new pumps, equipment and diabetes care improving every day.

I was diagnosed in 1978 aged 9 and your post brings back all those memories. How times have changed, I'm now also on a Medtronic pump with sensor and find it absolutely life changing from what we had to go through when first diagnosed (practicing injecting into an orange and then being told to just get on with it is a memory I wont forget). Thanks for the recap it brings back a lot of things that Id forgot about.

 

[faustus67]

I was diagnosed at age 3 in 1970 so I don't remember ever not having diabetes. It's frustrating and, although I believe in neither, I always think my karmic balance must be great so when I get reincarnated I get to be a rock star.

 

[Antje77]

although I believe in neither, I always think my karmic balance must be great so when I get reincarnated I get to be a rock star.

You're only 56, what about becoming a rock star in this life? We have plenty of amazing rock stars in their eighties so you could have at least 3 decades of being a rock star still!

 

[faustus67]

You're only 56, what about becoming a rock star in this life? We have plenty of amazing rock stars in their eighties so you could have at least 3 decades of being a rock star still!

Look out world, here I come.

 

[Grant_Vicat]

practicing injecting into an orange and then being told to just get on with it is a memory I wont forget).

Totally agree! What brain dreamt that one up!!

 

[RoughcutAU]

Only diagnosed almost two years ago as an adult I count myself reasonably lucky to be able to work with modern medicines and technology. While interesting … some of the stories from times past scare the “proverbial” out of me and don’t know if I would have copied especially if I was a child.

Pre diagnosis I was always a very routine methodical person so this has helped me cope greatly with living with T1D. I could write a whole story (as I’m sure we all could) about the effects its had on my life (good and bad) but i will stick to my two main little gripes.

1. The frustration of seemingly doing the same thing over and over and getting a different result.

2. Family and friends impatience/giving the hurry along when I’m just trying to do the things that keep me healthy/alive. “Yes Aunt Karen* it may taste better when its hot but I can’t exactly count carbs and dose in 5 seconds”. Or “No Susan* it won’t be the end of the world because I’m just checking my BGL before we run out the door”. *Names changed to protect the not so innocent.