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

Prancy · Jul 14, 2023

I recently realized that I’m tired of appearing so upbeat when people ask how I’m doing, especially, if it‘s friends or family who are asking how my diabetes management is doing. I feel obligated to smile and say positive things. I just feel exhausted sometimes from all the juggling to get things done and at the same time dealing with my insurance company and supplier for the tools I need to live. Plus, working to pay the bills…..ugh….I’m taking a mini vacation this Saturday. I think I really need it. Lol

Skylab · Jul 17, 2023

Hi Its nice to read actual realistic stories here about the reality of type 1.
Being diagnosed in1982 I am a relative newcomer.They never mentioned diabetes ruins ,rots your teeth due to excess sugar in blood .Even the dentist denied it recently...so I,m going to have a beer while I still can ,even carbon is bad for your teeth ,they said....

13h · Jul 18, 2023

alaska said:
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

Replenish · Jul 20, 2023

I hate it.
Its a boring rollercoaster everyday of too high to too low and a constant worry.
Saw the nurse on Tuesday and my Hba1c is the worst its been for years....... dont think I can even improve it without just eating nothing.
No one to talk to about it, no family understand, well the ones with type 2 offer advice but that just annoys me if im honest.
Sorry, no where else to put this stuff. I cant say it out loud, I have to smile and nod.

Prancy · Jul 20, 2023

Replenish said:
I hate it.
Its a boring rollercoaster everyday of too high to too low and a constant worry.
Saw the nurse on Tuesday and my Hba1c is the worst its been for years....... dont think I can even improve it without just eating nothing.
No one to talk to about it, no family understand, well the ones with type 2 offer advice but that just annoys me if im honest.
Sorry, no where else to put this stuff. I cant say it out loud, I have to smile and nod.

I can totally relate. I had that happen earlier this year. Now, I’m not pretending all is fine. For me, I have no reason to be embarrassed of my pain and struggles. I see many T1s around the world posting about their fatigue and stress.I have noticed this as a member of the diabetes global community. I have no problem telling a T2 that their way doesn’t work for me. Plus, not eating doesn’t necessarily keep my BG down. I’ll still spike and need a bolus sometimes.

Aj1981 · Sep 10, 2023

alaska said:
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

Hi Ed,

Just read your post, I am new here.

Honestly, you hit the nail on the head, I can totally relate to what you have written.

I am going through this every day and feel that at times its just making things worse, but still trying to stay positive and look on the bright side

SueAA · Sep 25, 2023

This thread has actually made me feel better - you really do think its just you, I have felt totally out of control mentally and it gets all consuming to the point of madness !!!
You lovely people though have shown me that we all have good days and bad days and we can all relate to the mind numbing distress that is Diabetes but just knowing that you are not alone really does help. So Thankyou x

UserNamesAreForLosers · Oct 31, 2023

My main experience is unfortunately not upbeat. Mine is constantly having people act like i'm a criminal, cross the street to avoid me, laugh at me and call me an "angry muslim". I'm not angry and i'm not a muslim thanks, though even i were i'm not sure how it's anybody else's business? I'm middle aged, I've often been walking for an hour and i'm out of breath, in quite a lot of pain, sweating, possibly closing in on a hypo and sick to death of bigots making comments about me that are a million miles from the reality of my existence.

NatashaGray99 · Dec 6, 2023

Seaquest said:
Hi Its nice to read actual realistic stories here about the reality of type 1.
Being diagnosed in1982 I am a relative newcomer.They never mentioned diabetes ruins ,rots your teeth due to excess sugar in blood .Even the dentist denied it recently...so I,m going to have a beer while I still can ,even carbon is bad for your teeth ,they said....

My teeth are terrible!! Both of my parents also have bad dental problems, and whenever I go to the dentist I leave feeling so gross and judged. The dentist never makes me feel okay, always just points out the bad and whenever I mention that I have diabetes and am insulin resistant and have bad sugar levels, it is always brushed off or ignored! I understand your pain!! I just think you only have one life - enjoy something sweet every now and then! We definitely deserve it!!

Prancy · Dec 6, 2023

I really appreciate health care providers who are nonjudgmental. When I’m at my most vulnerable, I expect compassion and professionalism. So far, I’ve gotten that from most doctors and dentists.

EllieM · Dec 6, 2023

NatashaGray99 said:
My teeth are terrible!! Both of my parents also have bad dental problems, and whenever I go to the dentist I leave feeling so gross and judged. The dentist never makes me feel okay, always just points out the bad and whenever I mention that I have diabetes and am insulin resistant and have bad sugar levels, it is always brushed off or ignored! I understand your pain!! I just think you only have one life - enjoy something sweet every now and then! We definitely deserve it!!

My previous dentist (Australia) had a T1 partner and my current dentist (New Zealand) is a T1. So they've both been realistic and non judgemental about diabetics needing more care for their teeth (and gums). My understanding is that some excess sugar gets put in saliva hence why we have issues.

I have to say I wasn't that impressed when one dentist suggested I should go wash my mouth out after hypoing at night though...

jaywak · Dec 8, 2023

Seaquest said:
Hi Its nice to read actual realistic stories here about the reality of type 1.
Being diagnosed in1982 I am a relative newcomer.They never mentioned diabetes ruins ,rots your teeth due to excess sugar in blood .Even the dentist denied it recently...so I,m going to have a beer while I still can ,even carbon is bad for your teeth ,they said....

I like the way you say you are a relative newcomer only being diagnosed in 1982 !

pins-and-needles · Dec 10, 2023

Replenish said:
I hate it.
Its a boring rollercoaster everyday of too high to too low and a constant worry.
Saw the nurse on Tuesday and my Hba1c is the worst its been for years....... dont think I can even improve it without just eating nothing.
No one to talk to about it, no family understand, well the ones with type 2 offer advice but that just annoys me if im honest.
Sorry, no where else to put this stuff. I cant say it out loud, I have to smile and nod.

I can relate to this as well.
It's been 30 years since I was diagnosed with Type 1 and I'm definitely suffering from diabetes fatigue. Sick of the highs and lows, tired of watching what I eat, struggling with my weight, starting to get neuropathy symptoms and just generally mentally exhausted.
As a poster above mentioned, it really does help to realise that we are not alone.

Prancy · Dec 10, 2023

pins-and-needles said:
I can relate to this as well.
It's been 30 years since I was diagnosed with Type 1 and I'm definitely suffering from diabetes fatigue. Sick of the highs and lows, tired of watching what I eat, struggling with my weight, starting to get neuropathy symptoms and just generally mentally exhausted.
As a poster above mentioned, it really does help to realise that we are not alone.

I noticed your username. Is that due to symptoms? Just curious. I’m type 1 for 23 years. I can relate.

pins-and-needles · Dec 10, 2023

Prancy said:
I noticed your username. Is that due to symptoms? Just curious. I’m type 1 for 23 years. I can relate.

Hi, yes I do get tingling etc in my feet. Been ongoing for over a year. Waiting list here in Wales to see a neurologist is apparently 2 years....

Prancy · Dec 10, 2023

pins-and-needles said:
Hi, yes I do get tingling etc in my feet. Been ongoing for over a year. Waiting list here in Wales to see a neurologist is apparently 2 years....

Oh my goodness. That wait sounds frustrating. So sorry.

I’ll just share that this summer I started getting tingling in my feet and occasionally in my hands during the night. Slight numbness in my feet too. One burning spot on one foot. My primary thought neuropathy. Me too. But, after full evaluation, the neurologist said it wasn’t neuropathy. I am still in shock. The only thing I’m left with is post covid syndrome, which my ENT diagnosed me with, due to my smell/taste disorder. It’s difficult to find a post covid specialist that’s available.
Oh, the hand and foot symptoms are getting much better. I’m amazed, since I thought the odds of that happening were slim.

adamrit · Feb 20, 2024

Prancy said:
I noticed your username. Is that due to symptoms? Just curious. I’m type 1 for 23 years. I can relate.

I was getting really down with Type 1 after nearly 67 years of it until I finally got a Medtronic 780G pump with Sensor 4. I wake up every morning with a reading between 5.5-5.8! I’m hypo unaware but my life is now just telling the pump what I am about to eat in carbs and saying yes. The computer in the pump gives me a little more insulin or less insulin automatically throughout the day and night. I basically don’t have hypers and hypos. And I don’t think about diabetes all the time.
I don’t know how I stood it for so long. My reaction to carbs changed every day in the past, so I was forever giving little correction doses or have to eat something sweet or glucose tablets (not a lot of fun). THE WORST THING WAS NEVER EVER HAVING A DAY OR EVEN AN HOUR OFF. You do have to let the 789G do its thing and not interfere, which is hard, but not having to worry whether I was going hypo or hyper all the time is heaven. Changing from 640G pump with Type 3 sensors tp &80G and Type 4 sensors is chalk and cheese. I’m free. I used to finger prick at least five times a day because the Type 3 sensor could be way off alarming me that I was 3.3 when my BG was 8.7! I could never rely on the sensor readings, so not fond of Medtronic. Plus ca change. I feel for for the first time in 67 years of tortuous Type One.
Adam

jaywak · Feb 20, 2024

johnbear2 said:
Being type 1 diabetes for 13 years,I have always managed my insulin around my job as a security guard.i take novorapid during the day and lantus at night,and still go out at the weekend.the point I am making is life does not stop because of being diabetic

Sent from my SM-A300FU using Diabetes.co.uk Forum mobile app

I'me with you on that one johnbear2 , I think the only thing that having diabetes type 1 has had on me is a better understanding of my body and to eat a sensible diet and exercise , I just wish I had understood this earlier .

CheeseSeaker · Feb 22, 2024

For perspective - I get wracked off with T1 at times, messes with your thinking, relationships, work, social life and ability to do stuff you want to.

There is a 'but' coming as you'd expect...

But - I'm in a better place now than in the last 50 years of T1 - I have alarms that tell me to eat if going low, I have a pump that does a good job of replacing a vital organ (most of the time) and I have a mobile phone that controls the pump so I don't have to tell the blummin thing when I eat, and what I eat - It just sorts it for me.

Its better than its ever been for me - not simple, and yes exhausting some times (you need to swallow a hell of a lot of reading and techno-cr*p to get there) but I'm already in the future of diabetes care (an automated pancreas) and while its not there yet - its within reach (if you have the reach of 5-10 years or so)

Nothing is perfect - but the last 10 years has been a massive leap towards 'Better' and there is light at the end of the tunnel (with restrictions)

I'd love to see what AI can do for us - collect a shed load of data and have it analyse strategies for when those things happen again (stress, exercise. Christmas dinner etc)

Prancy · Feb 22, 2024

CheeseSeaker said:
For perspective - I get wracked off with T1 at times, messes with your thinking, relationships, work, social life and ability to do stuff you want to.

There is a 'but' coming as you'd expect...

But - I'm in a better place now than in the last 50 years of T1 - I have alarms that tell me to eat if going low, I have a pump that does a good job of replacing a vital organ (most of the time) and I have a mobile phone that controls the pump so I don't have to tell the blummin thing when I eat, and what I eat - It just sorts it for me.

Its better than its ever been for me - not simple, and yes exhausting some times (you need to swallow a hell of a lot of reading and techno-cr*p to get there) but I'm already in the future of diabetes care (an automated pancreas) and while its not there yet - its within reach (if you have the reach of 5-10 years or so)

Nothing is perfect - but the last 10 years has been a massive leap towards 'Better' and there is light at the end of the tunnel (with restrictions)

I'd love to see what AI can do for us - collect a shed load of data and have it analyse strategies for when those things happen again (stress, exercise. Christmas dinner etc)

Very inspiring post!

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

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