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

[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 !!

I am a T1 diagnosed 30+ years ago and now on a Medtronic 670G pump. No fun to deal with this on a 24x7 basis. My family really doesn't understand what this is really like. My wife doesn't understand but does visit me in the hospital when that part happens. On the other hand, this is not cancer, or MS or ALS or or or. It is a reasonably manageable disease and may contribute to a longer life than otherwise as I am constantly worried about what I eat, when I eat, exercise, and see my doc regularly. So there's some good news.

 

[HomerSimpson]

I've non diabetic friends who often show 9s,10s and 11s particularly after meals.

That’s interesting. I’ve always wanted to know what post-prandial peak is normal for someone without diabetes. I go past 11 from time to time, and it drives me crazy, because I always think it’s too high.

I watched some YouTube videos of non-diabetics wearing a Dexcom , and they go up to 9.6.

 

[Don68]

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

 

[Don68]

I love this it made me cry because you absolutely nailed how I feel on a daily basis .

 

[Kiarna96H]

Literally sums it up! Very well written x

 

[Laura_]

Very well said. Thankyou.

 

[ErinKeegan]

My mum is diabetic, she leads normal usual life, but she needs additional time before having meals to get an insulin shot

 

[jaywak]

If you go to YouTube and type in #Type1uncut you will find some useful and informative video's of what it's like to live with type 1 diabetes, here's some information about how #Type1uncut came about:

https://www.diabetes.org.uk/Guide-to-diabetes/Type-1-Uncut-for-young-adults/

I quite like the following, it's an amusing take on the frustrations of everyday life with type 1 like testing, injecting and clinic appointments to name a few:

That could be quite depressing for a newly diagnosed type 1 to watch , just take it from someone who's been doing this for 47 years it has never ever been anywhere near that bad !

 

[rayray199]

a full time job with no days off

 

[Jillyeb]

Hi folks. I’m Type 1, insulin controlled these past 52 years. Diagnosed age 26. Freestyle Libre 2 brilliant in aiding control. Very active, we run a B&B in England, also love gardening, husband shops & prepares our delicious meals, adore socialising, animals, concerts etc. Have had 4 t.i.a’s (mini warning strokes) but have always found Diabetes quite simple, just a way of life which one adapts too from day one; no angst. Currently injecting 24 hr Tresiba + short acting Fiasp. HBA1c 7.4. Happy to help anyone needing a lighter approach & achieving confidence. Jilly B.

 

[Squeebo84]

This is my take on the t1. Things have changed in the last 4 years for me personally as i found a good woman and now have a 2 year old daughter and so i look at life a little different. I was diagnosed at the age of 12 and that was 25 years ago. I struggled... Never got the hang of it and i chose to ignore it to a degree, i didnt test my sugers and skipped jabs and even cut out my lantus for severel years whilst missing my appointments. 10 years ago i tried to get my head around it and went to a few appointments to be told i need to control my disease better but that was it no other help other than "sort yourself out".

I used to eat what i want and when i want, i was a introvert so didnt really go out much i would just sit in my small flat watching films and eating share size bags of crisps and chocolate. Ive never been a big person and my bmi has always been spot on so my thoughts were "im ok" and "dont need to eat healthy my weight is fine and im all good"
My neglect was my own fault but now i regret it majorly!!
I only have 9 of my own teeth left due too bad mangment and my eyes are starting to feel the neglect aswell as they are getting worse, i have bad arthritis in my right hand and its starting in my left but im not 100% if thats diabetes related or not (some studies "suggest" that it could be).
Ive been ignorant with my condition and as a result im starting to pay for it, id say im still healthy and i still go to work with a very good sick record doing a manual and physical job but the way i feel about living with it now is prodominatley fear.

I fear ive left it waaay to late to sort it out, i fear it is inevitable that ill lose my legs, i fear ill be blind within 20 years, i fear i wont be able to play with my grandchildren, i fear within a few years i wont be able to perform in the bedroom, i fear my good lady will leave me if she has to tend to my dressings and push me around in a wheel chair!
This week for some reason ive decided to give myself a massive kick up the **** and be better with MY diabetes. I cant reverse whatever damage i have done but i can stop it now from getting worse.
I was always told diabetes doesnt have to rule your life, and to a degree i dont believe this is true, i feel diabetes owns you but if your a stronger person than me then you can control it and live with it comfortable but it is always with you.

Living with it ignorantly isnt the way and i find i am lost and having to learn it all over again and its daunting but i am determined to do it this time. For my children for my missus and for me, today living with diabetes type 1 i feel hopeful and confident.


Rant over

 

[DAC1]

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

 

[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 !!

Can I recommend a DAFNE (Dosage Adjustment For Normal Eating) course to everyone who is a Type 1. It's a 5 day course (or was when I did it 15 years ago) and a bit like a Freestyle blood sensor, is life changing. It was available via my diabetic consultant at his venue in Tunbridge Wells. It was an intensive week but oh sooo useful in gaining the knowledge to manage/balance food/insulin intake. And that's what it's about isn't it?? I've now been type 1 for 51 years and so when I took the course, very cynically I confess, after about 36 years at that time, and considered my knowledge to be good enough to effectively manage my diabetes, I discovered a whole new way of getting it right. Like many others I'm sure, I've suffered with this chronic condition long enough for it to become a real daily nuisance even now There's no end to worrying about the condition 24 hours a day if you want to remain in good health and without the worries of the dreaded complications that might interfere with your life e.g. circulation problems, loss of vision, kidney issues and of course the possible loss of a limb. It's all of these potential problems that have driven me to look after myself as best I can and quite successfully. And DAFNE will seriously help with this and give you the confidence you need to make better choices and literally allow you to eat anything and I do mean anything. Will you be able to eat a banoffee pie and custard, a spotted **** and treacle, a baked alaska.....yes it will.....but not all of them in one evening!! Would you have done so if you hadn't been a type !? (you might have...piggy). But honestly, find out if a course is available near you , hopefully funded by your consultant or GP. The costing is minimal compared with the NHS costs of dealing with the complications of bad control. Good luck to you all.

 

[Lynnzhealth]

I was diagnosed in 2017 (age 69). Shock!! I decided to go low carb and did manage it very well. My blood test results were excellent.

Then in 2019 (age 71) I had a serious DKA episode and ended up in hospital for 4 days. Blood tests revealed T1. OMG! Can that be real? It even stumped the specialists.

Now at 74 I'm still struggling to keep my BG in the 'range' and my A1C below 6 (much to my 'teams' dismay). I am still low carb, but because I had bariatric surgery 40 years ago, I never know if I've taken the right dose. It's frustrating at times and I want to go eat pizza or whatever just because. It's a roller coaster ride, for sure.

The heat/humidity really knocks me out, so during this weather I pretty much am always at home with the A/C going. My dog and I can only walk short distances since 2017. We used to do miles every day. The cold winter weather is not so nice to me either.

It's constantly on my mind, I'm constantly checking with my monitor/sensor, I always carry chocolate and Dex tabs with me wherever I go. No more spontaneous things for me. I have to be prepared. This isn't going away so I have to accept it and carry on.

I wish all best for T1s and keep on being strong.

 

[Smiler99]

I have been diabetic t1 for 1 year and 1 month I was diagnosed aged 44 I haven't had any problems with the control of my blood sugar unless I have pizza. The only thing I struggle with is my cgm I struggle all the time. I'm still in the honeymoon period but I have been told by my diabeties nurse I am way to hard on myself and I am trying not to be, my mental health took a strain during covid when I had 2 job. I just needn't been so hard on yourself x

 

[johncon]

Can I recommend a DAFNE (Dosage Adjustment For Normal Eating) course to everyone who is a Type 1. It's a 5 day course (or was when I did it 15 years ago) and a bit like a Freestyle blood sensor, is life changing. It was available via my diabetic consultant at his venue in Tunbridge Wells. It was an intensive week but oh sooo useful in gaining the knowledge to manage/balance food/insulin intake. And that's what it's about isn't it?? I've now been type 1 for 51 years and so when I took the course, very cynically I confess, after about 36 years at that time, and considered my knowledge to be good enough to effectively manage my diabetes, I discovered a whole new way of getting it right. Like many others I'm sure, I've suffered with this chronic condition long enough for it to become a real daily nuisance even now There's no end to worrying about the condition 24 hours a day if you want to remain in good health and without the worries of the dreaded complications that might interfere with your life e.g. circulation problems, loss of vision, kidney issues and of course the possible loss of a limb. It's all of these potential problems that have driven me to look after myself as best I can and quite successfully. And DAFNE will seriously help with this and give you the confidence you need to make better choices and literally allow you to eat anything and I do mean anything. Will you be able to eat a banoffee pie and custard, a spotted **** and treacle, a baked alaska.....yes it will.....but not all of them in one evening!! Would you have done so if you hadn't been a type !? (you might have...piggy). But honestly, find out if a course is available near you , hopefully funded by your consultant or GP. The costing is minimal compared with the NHS costs of dealing with the complications of bad control. Good luck to you all.

I'd agree with this all the way. DAFNE was the first step I'd taken in years (been T1 for 40+ years now), this led to me going on a pump and from there I've been using the MiniMed 780 along with the guardian sensor for the last 18 months. Total transformation for me. HBA1C is the best it's been for as long as I can remember.

I think that many of us get in a rut and secretly get quite frightened of change, so we just do the same old same old day in day out. I was nearly dragged kicking and screaming to go on a pump but it's the best thing that I did/was forced to do in managing my diabetes. DAFNE was the starting point for me.

 

[Ladybird1]

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 !!

After being T1 for 59 years, I still get bogged down with it tbh. I got to a state where I thought, I've got Diabetes I'm stuck with it for life but I'm ruling it not the other way round

 

[jaywak]

Johncon , you said you were dragged kicking and screaming to go on a pump ,in my 47 yr experience of type 1 I would say it would be the other way round for me and I would have to drag them to get a pump , not that I want one and am in the proverbial rut with my daily pen injections and blood tests , I did ask about a Libre this year but was told no chance , it does still seem to be a postcode lottery as to the treatment we get .

 

[himtoo]

Johncon , you said you were dragged kicking and screaming to go on a pump ,in my 47 yr experience of type 1 I would say it would be the other way round for me and I would have to drag them to get a pump , not that I want one and am in the proverbial rut with my daily pen injections and blood tests , I did ask about a Libre this year but was told no chance , it does still seem to be a postcode lottery as to the treatment we get .

as for access to libre here is the latest NICE recommendations which clearly say that all type 1 diabetics should have access to this technology.
it is a lengthy wordy document but even stating this to your team could cause them to rethink.

https://www.nice.org.uk/guidance/ng17/evidence/b-continuous-glucose-monitoring-in-adults-with-type-1-diabetes-pdf-11013435182

also, if you are in England it would be really worthwhile to contact Dr. Partha Kar. He has long fought for this access for us type 1's and he will certainly get involved if you get in touch with him through his twitter account @parthaskar

 

[Bigbirduk]

So I'm new to the forum here, a little about my life of having diabetes > Type 1
so...... been diabetic since 14 > I'm now 35 years of age.... I've been through hell and back. seen the devil and met many people in life, lost time where I;ve hullanicated because of the many hypos I've had over the years times where I've lost track of times in slow motion (Yes a few bad ones I've had seen things that are not supposed to be there> I spoke to a black cat once at a bus stop waiting for the abulance as I nearly collapsed however it wasn't real there was no cat? ) many hospital trips and times where I'm grateful to be alive and saved dozens of times and thankful for that as well I've had a brush with near death a few times :/

There has been times where I've eaten lots of sugar/sweets just to feed my energy levels drinks and foods that I've eaten that seems to want to make feel better but to stuff it all becuse my brain is hungry and my stomach said 'eat this now becuse your sugar levels are low but it might me you sick' that's the one wispering in my ear to try and save my life but happy at times where I can just eat and try new food without the worry of carbs or anything because I want to feel normal

Nowdays I'm taking it easy, I feel like a tortise and an old man with a insulin that has given me a better chance of life without the worry that I could have a heart attck or stress on my chest when deailing with idiots.. too much to explain what I have to do to stay alive everyday I have a Novo Rapid Flex Pen that I take 3 times a day Morning 10 units Lunch 12 units and Dinner 14 units and the my Trisiba flextouch pen 26 units to keep the insulin in the background ticking while I'm alseep soudly (those noises I hear around the house I'm sure it's just something not to worry about)
I walk alot and I mean alot I dont stop untill I get most of what I want done shopping food shopping I dont smoke or drink (that's a good reason to stay healthy)

Main problem I have when out on my own I see food and things that will put my sugar levels sky high and drinks too and think I want to try that but I do resist it alot it's not rocket sience to keep the nasty sugars out but you only get to live once

(I blame those tables when you go into supermarkets. 'try before you buy' yep, thanks I'm now tipsy from the promotion of white christmas wine with somthing somthing in it when I didn't read the bottle moment)

But the main reason I try to enjoy life while Ive got it, even if I have to work hard keeping to being healthy as I can.

''Don't be afriad of something that you will know you'll regret not living the moment, time is a memory to everyone''