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

[type1since82]

I'm new here and live in the USA. I've been a T1 since the age of 2, I'm 43 now. I've been on the pump since the age of 20 and got pregnant. I've lost a child at 2 months old because my husband at the time put our son in our bed before he left for work thinking I'd be up in the next hour.....I didn't wake until my mom showed up due to not bringing my kids over to watch for my college classes 7 hours later. The pump kept pumping insulin which they assumed caused my convulsions and me rolling on my baby and suffocating him . I still don't forgive myself 22 years later. My levels have always been all over the place even if I do the exact same things the next day with the exact foods. The rollercoaster of it all... sucks. I finally was able to get a libre2 sensor which helps. But when you're low or too low you just don't hear those alarms or like someone else said can't think right to do anything about it. I've got sooooo many stories. I now work as a cashier at a gas station and my customers have seen some of my lows.... I act like I'm on drugs or drunk. I can't even work my register sometimes during this and have cried in front of them but I'll explain it to my regulars when I see them next and ya know apologize for my stupid behavior because that's how I feel. I've come across a few customers with the pump also and they check on me . It's a never ending cycle of emotions as a type 1. Which of course stress effects the sugars on either direction also! I found out over the years that if you drink alcohol your blood sugars will sky rocket then crash due to the type of carb but to eat without giving a bolus before going to sleep afterwards. It's a must. Tubes of frosting are easy to carry for lows and don't require us to put the effort into chewing or swallowing because sometimes me it's the last thing I want to do and takes to much focus that I don't have! I have worked so many different types of jobs including factory work, welding, bar tending/waitressing. I have never ate on a schedule or "meals". Dang it....I lost track, sugar is dropping. If you want to talk I'm here though

 

[Antje77]

I'm new here and live in the USA. I've been a T1 since the age of 2, I'm 43 now. I've been on the pump since the age of 20 and got pregnant. I've lost a child at 2 months old because my husband at the time put our son in our bed before he left for work thinking I'd be up in the next hour.....I didn't wake until my mom showed up due to not bringing my kids over to watch for my college classes 7 hours later. The pump kept pumping insulin which they assumed caused my convulsions and me rolling on my baby and suffocating him . I still don't forgive myself 22 years later. My levels have always been all over the place even if I do the exact same things the next day with the exact foods. The rollercoaster of it all... sucks. I finally was able to get a libre2 sensor which helps. But when you're low or too low you just don't hear those alarms or like someone else said can't think right to do anything about it. I've got sooooo many stories. I now work as a cashier at a gas station and my customers have seen some of my lows.... I act like I'm on drugs or drunk. I can't even work my register sometimes during this and have cried in front of them but I'll explain it to my regulars when I see them next and ya know apologize for my stupid behavior because that's how I feel. I've come across a few customers with the pump also and they check on me . It's a never ending cycle of emotions as a type 1. Which of course stress effects the sugars on either direction also! I found out over the years that if you drink alcohol your blood sugars will sky rocket then crash due to the type of carb but to eat without giving a bolus before going to sleep afterwards. It's a must. Tubes of frosting are easy to carry for lows and don't require us to put the effort into chewing or swallowing because sometimes me it's the last thing I want to do and takes to much focus that I don't have! I have worked so many different types of jobs including factory work, welding, bar tending/waitressing. I have never ate on a schedule or "meals". Dang it....I lost track, sugar is dropping. If you want to talk I'm here though

Hi @type1since82 , welcome to the forum.
I'm so very, very sorry about what happened to you. It's the most horrible thing that can happen because of a hypo. It's not your fault at all, it's the fault of the stupid diabetes, but I can understand it's a very hard thing to have to live with.

 

[Prancy]

I'm new here and live in the USA. I've been a T1 since the age of 2, I'm 43 now. I've been on the pump since the age of 20 and got pregnant. I've lost a child at 2 months old because my husband at the time put our son in our bed before he left for work thinking I'd be up in the next hour.....I didn't wake until my mom showed up due to not bringing my kids over to watch for my college classes 7 hours later. The pump kept pumping insulin which they assumed caused my convulsions and me rolling on my baby and suffocating him . I still don't forgive myself 22 years later. My levels have always been all over the place even if I do the exact same things the next day with the exact foods. The rollercoaster of it all... sucks. I finally was able to get a libre2 sensor which helps. But when you're low or too low you just don't hear those alarms or like someone else said can't think right to do anything about it. I've got sooooo many stories. I now work as a cashier at a gas station and my customers have seen some of my lows.... I act like I'm on drugs or drunk. I can't even work my register sometimes during this and have cried in front of them but I'll explain it to my regulars when I see them next and ya know apologize for my stupid behavior because that's how I feel. I've come across a few customers with the pump also and they check on me . It's a never ending cycle of emotions as a type 1. Which of course stress effects the sugars on either direction also! I found out over the years that if you drink alcohol your blood sugars will sky rocket then crash due to the type of carb but to eat without giving a bolus before going to sleep afterwards. It's a must. Tubes of frosting are easy to carry for lows and don't require us to put the effort into chewing or swallowing because sometimes me it's the last thing I want to do and takes to much focus that I don't have! I have worked so many different types of jobs including factory work, welding, bar tending/waitressing. I have never ate on a schedule or "meals". Dang it....I lost track, sugar is dropping. If you want to talk I'm here though

I’m so sorry for your loss. It’s great that you are looking for solutions. Type 1 is so cruel, imo.

Have you tried a pump with an integrated cgm, that stops insulin delivery, if you are going low?

 

[Hopeful34]

Hi @type1since82 I'm so sorry you lost your son because of diabetes, and have continued to have lots of bad hypos.

If you haven't already done so, it may be helpful to set your alarms on your libre at say 5.0 and then if you're trending low, you have time to eat something to help prevent you getting into hypo territory.

Do you have any support from your diabetes clinic? Have they suggested anything to help you reduce the hypo's and hypers you're experiencing? It's no wonder you're fed up as hypo's are draining.
Again, you may have done this recently, but if not, it's essential to do fasting basal tests from time to time to check that your having the right amount of basal insulin.

 

[Lucky12345]

Being diagnosed as a type 1 diabetic was my worse nightmare, I had a fear of needles, I refused to believe I was a diabetic therefore I refused to inject myself. This battle went on for months and months and still I refused, in the end I gave in but my nightmares were just beginning. The dreaded needle phobia, it took me nearly 5 years to inject myself with confidence, I am now used to needles ( only small ones )Anyway, I still hate being a type 1 diabetic.,It’s such hard work, having to constantly watch what you eat and drink ( I don’t drink alcohol) and I don’t smoke, to be honest I do treat myself, am sure there are a lot of you do the same. I do not have the ability to be strict with my diet etc. For me personally, these past years have been nothing but a struggle, I hate , despise being this way, I just wish it would go away .

 

[kkapo18]

I'm going to be totally honest. I got diagnosed 1 month ago and as a 34 year old, this I knew was going to completely change my life. I didn't know the extent to which it would. Day by day I realised how much control I wanted over my blood sugars and became really really REALLY determined to make sure I do my physically best to control this.

I've read Dr Bernsteins book, as well as 'Think Like a pancreas' and watched several low carb doctors and picked up a wealth of knowledge in a short period of time. I initially did not have a CGM as you have to technically have to be diagnosed officially with T1 (which it has now been confirmed) but i got hold of a CGM (self funded) and have been really monitoring it with a close eye.

Since following a low carb diet my predicted A1c over the last 1 month of diagnosis is 5.7%. I still want better and believe it very much can be done.

What I would say in this short period (and many of you will know infinitely more than me having lived with this condition longer) controlling sugars if you are really determined and strive for living an optimal life, is VERY dooable.

I would encourage more people to be more curious about diet, technology, exercise and believe this can change your thought process about this condition tenfold.

I'm happy to speak to anyone, or help where I can even though i'm early on to share my experiences!