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

[Ray B]

70 years living with Type 1, wow that is incredible and with so many changes over the decades too, thank you for posting, I feel very humbled indeed X
Take care and be safe

70 years with Type 1 is amazing and I can say that with some certainty as I have had Type 1 for 74 years. Born 1946, probably with diabetes but not diagnosed for 8 months.
Things were very different then with insulin produced from pigs, which probably explains the shape of my nose (only kidding).
I remember injecting once day, before breakfast with 80 Lente insulin. No easy blood glucose testing which consisted of dropping 10 drops of water and 5 drops of urine into a test tube and placing a ‘Clinitest’ tablet in and watching it boil. This would produce a coloured solution, blue represented a good result and orange high sugar level.
Once a day injection was also more difficult to manage as once in your system you could find yourself ‘chasing’ your blood sugar all day.
I am presently taking Humalin QA insulin and Lantus background.
Played sport all my life, including marathon running, cycling, football and now I teach Pilates.
It is great to see so many long term diabetes people and hopefully this allows newly diagnosed to have some sense of positivity in their life.
Well done
Ray B

 

[Robinredbreast]

70 years with Type 1 is amazing and I can say that with some certainty as I have had Type 1 for 74 years. Born 1946, probably with diabetes but not diagnosed for 8 months.
Things were very different then with insulin produced from pigs, which probably explains the shape of my nose (only kidding).
I remember injecting once day, before breakfast with 80 Lente insulin. No easy blood glucose testing which consisted of dropping 10 drops of water and 5 drops of urine into a test tube and placing a ‘Clinitest’ tablet in and watching it boil. This would produce a coloured solution, blue represented a good result and orange high sugar level.
Once a day injection was also more difficult to manage as once in your system you could find yourself ‘chasing’ your blood sugar all day.
I am presently taking Humalin QA insulin and Lantus background.
Played sport all my life, including marathon running, cycling, football and now I teach Pilates.
It is great to see so many long term diabetes people and hopefully this allows newly diagnosed to have some sense of positivity in their life.
Well done
Ray B

Hi there, @Ray B I'm sure you have a nicely well structured nose lol
I too started on pork Insulin, beef Insulin was also available.
I am a fit and active person too, I have been through the wars, but always get up and dust myself off. I had my daughter at 42 1/2 which was amazing, she is 19 now.
I love to read stories of type 1's who have had this condition for such a long time, decades, and they keep going and who are so inspirational.
Best wishes, take care and stay safe

 

[Electra Darling]

Hi, I’m new to the forum. I’ve had diabetes for 18 years, diagnosed when I was 12. I’ve been on an insulin pump for 15 years, and am self-funding CGM at the moment. I also trained as a doctor, and until recently was working as an orthopaedic surgeon (I have since quit in favour of an alternative career).

I think we are taught diabetes pretty terribly at medical school. Almost all doctors, except for the diabetes specialists, are terrified of prescribing insulin and changing insulin doses, because it’s a very unpredictable drug which behaves differently in different people. When I’m explaining to colleagues what it’s like to live with diabetes, I start by reminding them of how nervous they are around insulin, and then tell them to pretend they’re 12 and it’s their own body that they’re treating.

Type 1 diabetes is one of the only conditions where doctors give us patients the control over our own medication doses. They tell us that it’s our responsibility, that we can never take a day off, and when our HbA1c goes awry most doctors, in my experience, blame us, the patients. Even the language “what’s your control like?” puts all the onus on us to manage our incredibly complicated condition, and sets up inevitable feelings of blame and shame when we struggle.

I’m sorry to be so negative when so many others here are so positive and upbeat, but my honest answer to the question of what it’s really like to live with type 1, is that it’s exhausting and disheartening and demoralising, and I would give anything just to have one day off.

 

[MarkMunday]

... Type 1 diabetes is one of the only conditions where doctors give us patients the control over our own medication doses. ....

That is how it is supposed to work. More importantly, the doctor should help the patient feel in control. Only then can patients actually take control and do what needs to be done. The problem is that doctors have very limited understanding of the challenges patients have to deal with. They also have very limited understanding of using insulin in a way that matches insulin action with insulin requirements. Perhaps expecting doctors to have such insights is not realistic.

After doing this 42 years, I now just tell the doctor what I need, based on my understanding of the requirement. I use a variation on the typical MDI protocol - 13 units Lantus & 8 units Actrapid in the morning to cover basal and Novorapid for bolusing when necessary. When combined with a ketogenic way of eating, it works perfectly for me. But I had to work it out for myself with very little support from doctors. Patients often feel abandoned by doctors and it is a pity that they don't see their role more broadly.

 

[ert]

It's ironic that we use a drug that saves our lives but can also kill us.
I felt insulin would kill me for a while after my diagnosis. I self-funded a Libre and MM straight away after accepting that I needed insulin to save my life. I'm really stable following Dr Beinstein's Diabetes Solution, so feel a lot more self-assured now that my BS's have flatlined. It's not the usual way to managing type 1 but I get BS results.
My GP has arranged for the Oxford first-year medical students to try to diagnose me, with my initial symptoms, each year in the surgery. I'm amazed at how little they know about diabetes, in general, let alone type 1.

 

[KK123]

Type 1 diabetes is one of the only conditions where doctors give us patients the control over our own medication doses.

I guess it's a question of them having to, what other condition I wonder requires so much attention every minute of every day? Trying to emulate a working pancreas that in a normal person releases and stops the secretion of insulin every second as and exactly when it needs to. Until they find a cure or invent a system that requires NONE of our personal input then 'it's over to us'. x

 

[kleigh88]

Hey

I'm a type one diabetic and was diagnosed 7 years ago at the age of 25. I found this difficult in itself as I had a 3 year old boy and life was good, I had overcome depression that I suffered in my late teens into my early 20s and finally felt that I had everything I wanted in life. When first diagnosed I had absolutely no idea what type 1 diabetes was which is something that I feel ashamed of now! My control was very good and I was really religious with my diabetes for about 18 months and then I did the DAFNE (dose adjustments for normal eating) course at hospital and not long after this I hit a massive wall with my diabetes, big time and in a way it's because I felt very overwhelmed, almost like I knew too much about diabetes and couldn't face it or the thought of living with this disease for the rest of my life. When I make an effort to look after myself I end up having lots of hypos which makes me feel that way. I've always been really critical of myself and if I was having high blood sugars or low blood sugars I would beat myself up about it relentlessly! Since having my first son at age 21 I had gained quite alot of weight and in 2016 I decided to join a slimming world group with my Granny to try and get to a point where I felt better about myself, sadly I am still waiting for this to happen, I lost nearly 4 stone and got to 13 stone which is still heavy for my height of 5 foot 6! Everyone kept telling me how good I looked and in my head all I could think was I'm so far, that's the way I've been since I was a teenager! I kept telling people that I've got a long way to go that I need to lose another 3 stone but people kept asking me where I needed to lose it from that I looked great etc. It doesn't matter how many times anyone says these things to me because my own head doesn't feel the same about myself. Not long after losing all that weight I found I was pregnant with my second child and because of my unhealthy relationship with food I was binge eating alot thinking 'well I'm pregnant so if anybody calls me fat, I've got a reason to be.' Although I was eating alot, my sugars were the best they had been for months because I had a baby to look after in my body I couldn't be putting him at risk of being poorly, he was a reason to look after myself. Being pregnant with type 1 is by far the most difficult process I have gone through in my life! The constant checking of blood sugars, the worse than usual fatigue, worry about being sick because of sugar levels altering, everything that I had to do just made me worry and I didn't enjoy my pregnancy like I did the first time round when I wasn't a diabetic. My baby boy was born 4.5 weeks early and ended up being really poorly anyway even though I took care of myself. It was a really difficult time, he was delivered via an emergency C-section, I was going to the hospital that day just to have a growth scan but the blood flow through the placenta wasn't as it should be and so I was told I would be induced. I was terrified but I wanted a natural birth so went to the ward and had a monitor attached to me to monitor baby's movement and heartbeat etc. After half hour on the ward I was told that my baby's heart rate wasn't good and that I needed to have a c-section right away. I was absolutely terrified at this point, I had never had any kind of surgery and because I have OCD and anxiety, I struggle with thoughts of not being around for my family or them not being around for me and to have absolutely no control of a situation is really scary for me, but we had to get my baby out so there was no option but to go through with it. Unfortunately I had suffered a secondary heart attack after my baby was removed from my tummy and I really thought that my days were numbered. My little boy was born not being able to breathe and he was having hypoglycemic episodes and seizures. I ended up staying in hospital to be treated while he was separated from me and taken to NICU at another hospital, I was absolutely devastated and he didn't get his first cuddle from me until he was 10 days old as he ended up having a collapsed lung just before I was going to see him properly for the first time!! I was transferred to the hospital my baby was in so I could be nearer to him which was a comfort. I got discharged shortly after and my baby boy finally came home just short of a month after being born! It was a complete rollercoaster of emotions and a few weeks after he had been home and I felt more settled I decided that I would try and get rid of some baby weight! 4 months of trying and literally no weight lost or gained but frustrating when you are trying to lose weight and nothing happens!! I had been struggling to take care of myself with regards to my diabetes since my son was born, one reason was the stress of everything that had happened and then when he was home it's the busy schedule you get with a new baby and I have never been a priority, I always look after others first. Unfortunately, I slowly developed diabullimia and I am still struggling to this day. I suffer with depression and started taking antidepressants a few months ago but my eating disorder is still very much taking over my life. I feel that if my diabetes was well controlled then my mood would be alot better, I do have a rational side but my brain never seems to let that side of me prevail!! I had a bit of a meltdown last night because of me not looking after myself, the guilt of having 2 children and not taking care of myself and because I am putting myself more at risk of COVID by not taking care of myself. I want to live, I want to be around for my children, I don't want COVID or die from catching COVID, yet I still can't stop doing this to myself! My partner said he is going to help me get back onto the healthy food without me becoming too obsessed with losing weight but I worry about how long I can sustain this for as I have gone through periods of taking care of myself and it never lasts that long because I feel that I put loads of weight on when I start my regime properly, I see the insulin as basically injecting fat into myself. I really admire those of you with type 1 who manage it well and can handle the disease mentally this is my reality of living with type 1 diabetes and although it's not a happy story, this is my story! Xx

 

[Choosehappy]

70 years with Type 1 is amazing and I can say that with some certainty as I have had Type 1 for 74 years. Born 1946, probably with diabetes but not diagnosed for 8 months.
Things were very different then with insulin produced from pigs, which probably explains the shape of my nose (only kidding).
I remember injecting once day, before breakfast with 80 Lente insulin. No easy blood glucose testing which consisted of dropping 10 drops of water and 5 drops of urine into a test tube and placing a ‘Clinitest’ tablet in and watching it boil. This would produce a coloured solution, blue represented a good result and orange high sugar level.
Once a day injection was also more difficult to manage as once in your system you could find yourself ‘chasing’ your blood sugar all day.
I am presently taking Humalin QA insulin and Lantus background.
Played sport all my life, including marathon running, cycling, football and now I teach Pilates.
It is great to see so many long term diabetes people and hopefully this allows newly diagnosed to have some sense of positivity in their life.
Well done
Ray B

It does thank you x

 

[Choosehappy]

Hi there, @Ray B I'm sure you have a nicely well structured nose lol
I too started on pork Insulin, beef Insulin was also available.
I am a fit and active person too, I have been through the wars, but always get up and dust myself off. I had my daughter at 42 1/2 which was amazing, she is 19 now.
I love to read stories of type 1's who have had this condition for such a long time, decades, and they keep going and who are so inspirational.
Best wishes, take care and stay safe

These small stories mean a lot to me as a newly diagnosed and show me that the only thing my diagnosis truly should change is my pancreas x

 

[Choosehappy]

Hey

I'm a type one diabetic and was diagnosed 7 years ago at the age of 25. I found this difficult in itself as I had a 3 year old boy and life was good, I had overcome depression that I suffered in my late teens into my early 20s and finally felt that I had everything I wanted in life. When first diagnosed I had absolutely no idea what type 1 diabetes was which is something that I feel ashamed of now! My control was very good and I was really religious with my diabetes for about 18 months and then I did the DAFNE (dose adjustments for normal eating) course at hospital and not long after this I hit a massive wall with my diabetes, big time and in a way it's because I felt very overwhelmed, almost like I knew too much about diabetes and couldn't face it or the thought of living with this disease for the rest of my life. When I make an effort to look after myself I end up having lots of hypos which makes me feel that way. I've always been really critical of myself and if I was having high blood sugars or low blood sugars I would beat myself up about it relentlessly! Since having my first son at age 21 I had gained quite alot of weight and in 2016 I decided to join a slimming world group with my Granny to try and get to a point where I felt better about myself, sadly I am still waiting for this to happen, I lost nearly 4 stone and got to 13 stone which is still heavy for my height of 5 foot 6! Everyone kept telling me how good I looked and in my head all I could think was I'm so far, that's the way I've been since I was a teenager! I kept telling people that I've got a long way to go that I need to lose another 3 stone but people kept asking me where I needed to lose it from that I looked great etc. It doesn't matter how many times anyone says these things to me because my own head doesn't feel the same about myself. Not long after losing all that weight I found I was pregnant with my second child and because of my unhealthy relationship with food I was binge eating alot thinking 'well I'm pregnant so if anybody calls me fat, I've got a reason to be.' Although I was eating alot, my sugars were the best they had been for months because I had a baby to look after in my body I couldn't be putting him at risk of being poorly, he was a reason to look after myself. Being pregnant with type 1 is by far the most difficult process I have gone through in my life! The constant checking of blood sugars, the worse than usual fatigue, worry about being sick because of sugar levels altering, everything that I had to do just made me worry and I didn't enjoy my pregnancy like I did the first time round when I wasn't a diabetic. My baby boy was born 4.5 weeks early and ended up being really poorly anyway even though I took care of myself. It was a really difficult time, he was delivered via an emergency C-section, I was going to the hospital that day just to have a growth scan but the blood flow through the placenta wasn't as it should be and so I was told I would be induced. I was terrified but I wanted a natural birth so went to the ward and had a monitor attached to me to monitor baby's movement and heartbeat etc. After half hour on the ward I was told that my baby's heart rate wasn't good and that I needed to have a c-section right away. I was absolutely terrified at this point, I had never had any kind of surgery and because I have OCD and anxiety, I struggle with thoughts of not being around for my family or them not being around for me and to have absolutely no control of a situation is really scary for me, but we had to get my baby out so there was no option but to go through with it. Unfortunately I had suffered a secondary heart attack after my baby was removed from my tummy and I really thought that my days were numbered. My little boy was born not being able to breathe and he was having hypoglycemic episodes and seizures. I ended up staying in hospital to be treated while he was separated from me and taken to NICU at another hospital, I was absolutely devastated and he didn't get his first cuddle from me until he was 10 days old as he ended up having a collapsed lung just before I was going to see him properly for the first time!! I was transferred to the hospital my baby was in so I could be nearer to him which was a comfort. I got discharged shortly after and my baby boy finally came home just short of a month after being born! It was a complete rollercoaster of emotions and a few weeks after he had been home and I felt more settled I decided that I would try and get rid of some baby weight! 4 months of trying and literally no weight lost or gained but frustrating when you are trying to lose weight and nothing happens!! I had been struggling to take care of myself with regards to my diabetes since my son was born, one reason was the stress of everything that had happened and then when he was home it's the busy schedule you get with a new baby and I have never been a priority, I always look after others first. Unfortunately, I slowly developed diabullimia and I am still struggling to this day. I suffer with depression and started taking antidepressants a few months ago but my eating disorder is still very much taking over my life. I feel that if my diabetes was well controlled then my mood would be alot better, I do have a rational side but my brain never seems to let that side of me prevail!! I had a bit of a meltdown last night because of me not looking after myself, the guilt of having 2 children and not taking care of myself and because I am putting myself more at risk of COVID by not taking care of myself. I want to live, I want to be around for my children, I don't want COVID or die from catching COVID, yet I still can't stop doing this to myself! My partner said he is going to help me get back onto the healthy food without me becoming too obsessed with losing weight but I worry about how long I can sustain this for as I have gone through periods of taking care of myself and it never lasts that long because I feel that I put loads of weight on when I start my regime properly, I see the insulin as basically injecting fat into myself. I really admire those of you with type 1 who manage it well and can handle the disease mentally this is my reality of living with type 1 diabetes and although it's not a happy story, this is my story! Xx

You can beat this, you can! You will live a beautiful life and you will get through these hard times with strength! And you are stunning, and you are worth this world, yes sometimes sad and horrid, but filled with family love and wonderful things to see and do. Spend your time wisely and if you ever need to talk, please feel free to send me a message!

 

[DAC1]

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 !!

 

[videoman]

Started at 1960 and still go strong ( well neally) at 74 so it's been 60 years with hardly any problems and still trying to live till 79 years I hope?

 

[DAC1]

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 !!

Been Type 1 for nearly 50 years. Takes a while to learn to manage your condition effectively and in relation to specific thoughts about long-life and possible complications. Also, recognising low and high blood sugars before testing....your body always tries to let you know...listen to it and feel for it.
Unless you learn pretty quickly to balance your intake of carbs with the insulin you inject you're gonna be in trouble sooner or later. DAFNE is invaluable for helping with this and is so worth the initial slog to learn about balancing carbs and insulin. I also managed to get on to Libre sensors about 8 months ago and they are life-changing particularly for somebody like me who checks his blood up to 12 times a day. No more bleeding, sore fingers...thank God (or rather the NHS).
There is absolutely no doubt that continuing good health with no health complications is dependant upon maintaining as near 'normal' a blood glucose as possible i.e. between 5 - 8 (that's why I do mine so often). Minor highs and lows (short term) either side of that are ok. I've non diabetic friends who often show 9s,10s and 11s particularly after meals.
Type 1 becomes so much part of your thinking throughout the day, and when you go to bed, and of course when driving. But it is manageable and a full and healthy life can be had with it...if you do so.
I've known Type 1s who have been overcome by the condition in the past and have attempted to take their own lives in desperation. It CAN be overwhelming at times because there's no break from it. Wouldn't it be great to have a months holiday from it every year? If anybody ever feels desperate PLEASE talk to somebody about it or get in touch with us at the forum.
Warm wishes to all.

 

[fingerpain]

The research and improvements in T1D increases the lifetime. Technology and awareness of food nutrition information helps people comparing 4 years (vast improvement if we compare decades). NHS help effectively and let us believe the remedy is not far. Never give up.

 

[donnieboy]

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 !!

There will be many horrible, sad stories and frightening tales of ER visits in this thread, so I'll go to the good news:

We, who manage our blood sugars, are typically a tad healthier than the population at large who don't care for themselves in general.
We tend to watch our sugars on a very frequent basis, eat regularly, and don't over-indulge in things we shouldn't over-indulge in.
We go to the physician more often than most folks. Pro-active medicine is better for you.
We watch our weight as it's an indicator of other things like ketoacidosis.
We know a lot of impressive words like "Ketoacidosis" and "Glucosometer"
We can translate units from mL
We exercise as a means to manage our chemistry (blood sugar). I played racquetball, for example. It did almost kill me as I broke my neck playing (since fully recovered) however.
We tend to know more about food than others. We have a super power and can estimate the carbohydrates of everything from a cracker to a beef burrito from a roadside taco stand.
We deal with it. This is a manageable disease and much preferred to other ones.
Great luck to you all!

 

[PaulAshby]

Thank you for sharing this. I'm really looking for some real stories based on personal experience

It's very irritating, having to think what's good food to eat and what you should and shouldn't drink but have to say keeping an eye on your blood glucose levels isn't that difficult.
Here's a real story from my past. I practiced karate and took precautions is more carbohydrates to get me through the lesson but one night another member was giving me a lift home when I suddenly became hypoglycemic and asked the driver to stop and let me out unknown to them of my condition, they drove off and I tried to walk home but couldn't get there and ended up being arrested for lashing passing cars with my karate belt, the officer realised what was going on at the station and bought me a Mars bar then took me home.
Embarrassing could have been worse I guess.

 

[Ushthetaff]

40 years type 1 for me, 17 year old when diagnosed , full of testosterone ,really bad age to get it ! My theory it’s not going to change what I do and to be honest it didnt, back then blood sugars weren’t taken ( only at hospital) , so control was poor, very poor this contiued for years but it finally caught up , lost lower part of right leg in 2014 , i then decided I better start looking after myself a bit late maybe but I did it ! Now 40 years of diabetes later I’m fit healthy I take my bloods , so there is hope for everyone , Diabetes doesn’t need to be the only thing you do in your life but when you’ve got it you just need to respect it and treat it accordingly and with today’s technology diabetics of the future reaching 50 or 60 years longevity will be common place .

 

[PaulAshby]

70 years with Type 1 is amazing and I can say that with some certainty as I have had Type 1 for 74 years. Born 1946, probably with diabetes but not diagnosed for 8 months.
Things were very different then with insulin produced from pigs, which probably explains the shape of my nose (only kidding).
I remember injecting once day, before breakfast with 80 Lente insulin. No easy blood glucose testing which consisted of dropping 10 drops of water and 5 drops of urine into a test tube and placing a ‘Clinitest’ tablet in and watching it boil. This would produce a coloured solution, blue represented a good result and orange high sugar level.
Once a day injection was also more difficult to manage as once in your system you could find yourself ‘chasing’ your blood sugar all day.
I am presently taking Humalin QA insulin and Lantus background.
Played sport all my life, including marathon running, cycling, football and now I teach Pilates.
It is great to see so many long term diabetes people and hopefully this allows newly diagnosed to have some sense of positivity in their life.
Well done
Ray B

Amazing stuff, remember those needles and Rocket syringes having to boil them to sterilize, at least they've got better now.

 

[Soplewis12]

Thank you so much, @himtoo . I really appreciate that. I wrote it in desperation a couple of years ago, to get my head around things, and showing it to my DSN back then was the start of my journey to get myself a little more balanced in my attitude towards my diabetes, and motivated me (and my DSN) to start talking pumps. I occasionally dig it out to have another read of it, because it reminds me how far I've come just in the last two years.

Thank you for starting this thread - it's brilliant to hear how others cope with diabetes in our everyday lives.

I thought it was fantastically written & thought oh my god I could have written this! I'm on omnipod dash pump now for 2 months & overall doing ok but still not perfect. I am hoping one final tweak with a bolus rate after adjusting my teatime ratio last night could be it. I may a achieve a whole day of the magic numbers, lol.
I also put pressure on myself but I am trying to relax a bit.
Again thank you for writing

 

[Ginny 2]

Hi everyone, I am on Fiasp via the Medtronic 640g pump and use the Libre.
I am in range around 60% of the time. I get hard on myself.
Currently struggling with my depression and instead of trying to sort myself out I have reached out to the doctor and been referred to the luton wellbeing team. I am angry and frustrated a lot of the time at the moment.
Five years diagnosed.