My Story

[jasmith1990]

Hi everyone,

I've never told my story to any diabetics other than some people that know me in real life and obviously my family not even on the course I took years ago with other diabetics. I've never actually told my story and it's quite unique so people might find it interesting and I've still not grasped the condition 100% yet although I'm a lot better than I have been in periods of my life. I'm gonna tell the whole story and it's quite long so hopefully you make it to the end.

I got type 1 diabetes when I was 10 years old (currently turning 32 next month), and this would of been 2000 so the understanding of it wasn't what it was today back then. So when I got it I was told the basics you take insulin for meals, I was warned of the risks with eyesight and amputation and things like that so I had an understanding of the risks but I was young and I was fresh so my body was in basically top condition then. So I always did my own injections from the first day, never had a problem with that. I took it seriously for about a year or two and then when I hit 12-13 I basically stopped doing insulin and I did do it, but it would be like once a day if that and I was constantly running in the high 20's even at unreadable levels often all the way up to about 16. During that time I started smoking at about 13 and smoking weed heavily and I did that from about 13-17 on a pretty much daily basis if I could or weekly basis. I lost an insane amount of weight, I was very thin and ill looking and not really understanding what was going on. I didn't actually know you could lose weight, I was never told that one. So I went through that, and then when I went to college I smoked weed less and got into other class A drugs like ecstasy, cocaine, ketamine, magic mushrooms, lots of things really tbh. And I did that from about 16-19. During that time I did start to do insulin regularly because I thought if I'm doing this, I have to at least keep the blood sugar levels down so I don't go into some irreversible condition. I was working out a bit and put some weight back on. So I was doing insulin and not many blood tests, I'd only do them if I really thought it was necessary, so I was guessing, I wasn't carb counting, and subsequently I had a lot of hypos. I LOT of hypos, like I was having 4 a day sometimes then bump it back up into range again and go on like that, but I had no libre to see the trends of what was happening, I just went on how I felt. I was having so many that I lost the ability to recognise a hypo but in my mind I thought well anything is better than blindness or amputation, so I thought as long as I avoid that I'm good. So I'm doing all these drugs and smoking, not really drinking so much tbh. I only now and again. I nearly died on one occasion due to some bad ecstasy, another time I came back from a nightclub having done ecstasy and attacked my dad who came round to my mums to see me without having any idea, like they've injected me with one of those glucose shots and it's revived me and half naked and my parents looked terrified. So I was recognising this is quite serious and mad things can happen. I developed quite bad anxiety (I believe I was already depressed without knowing and the constant ecstasy use depleted my serotonin to dangerously low levels causing the anxiety problem), and I ended up packing in all class A drugs altogether. I then went to University 5 hours from where I grew up to get away from everyone I knew basically and start fresh, I was still smoking and smoking weed right up til about a year ago. I did some ketamine, but nothing else I was pretty straight at Uni. Anyway, finished my course and my mum had moved house to another county so I've moved back in with her and I had a girlfriend at the time and stuff so didn't really bother me that much. During this time I was hospitalised for an extreme hypo I'd never had before, my mum had phone the ambulance before but it had never got to that level and I had woken up on the floor with half my body dead, and the lucozade I had was on the other side of the bed so I couldn't stand up, shout, anything, I was barely conscious probably 0. something. Luckily my mums friend came upstairs and let me know they were off doing something and found me, rang an ambulance and I was in hospital for a while and had brain scans and stuff, my body reverted back to normal and I thought fair enough. I made it through another one. Had my drivers license suspended and stuff as a precaution cause they said I might kill people on the road. Then I moved out of my mums and into my own flat. During this time I had another incident where I nearly went that way again but I just had paramedics and no hospital admission. So I'm realising I'm not as resilient as I was and I need to sort this out. Obviously I've got my personal life going on whilst all of this happening which I don't wanna go into, but something happened in my personal life and I lost my job and my purpose and went heavy back into the weed. I wasted about 3 years not really doing much, I was away from my close friends and a lot of my family died over a period of like 5 years so I was low on family and friends around to lift me up. I also collapsed on my face one time in town and another time in the fruit isle in Tesco and had to grab onto the thing and my legs weren't operating properly, I'd gone super low and not known. Cause I was walking around at 1. something and still conscious sometimes. My mum is also extremely disabled, she has MS so I don't like to bother her with my problems it makes her worse. So I just soldiered through that mostly on my own, and then got into gym. And when I got into gym I realised exercise changes your blood levels so I needed a better way to test my levels. BTW I hadn't done a blood test at this point for about 4-5 years, unless necessary, mostly guessing. I was doing insulin every day and eating but I was having hypos a lot as I mentioned. Anyway, got a libre and plodded along doing that, quit smoking, quit drinking everything. Put on 2 and a half stone of muscle in the gym and got my heart rate down to about 57bpm over 2 and a half years. The nurses at the hospital couldn't believe I was alive because they could see my libre and obviously going into it I was still having too many hypos I'll post a screen of my readings so you can see the averages I run at now. I worked out I had a biphasic insulin curve, which makes sense due to my high metabolism so I always needed two smaller injections for a meal rather than one which I never knew about. So I learnt a lot about what my body is doing with it. Now some of the problems I've noticed off the back of my long history of stupid behaviour is I did get neuropathy in my feet which I managed to reverse quite a bit of through taking a specific set of vitamins at the highest dose along with exercise. I do still get cold feet but no where near as bad and only when I run outside of the 4-8 range or if I haven't slept properly. That's the only time I noticed it. I do have some background retinopathy but nothing serious as I was running low rather than high so often so even with the smoking I somehow managed to dodge the worst of that. I've noticed since putting on this muscle that my hands and feet will always be thinner than they should be, I believe this is due to my choices during puberty of not looking after myself and how I developed growing. I'm 6ft 14 stone so I'm quite big and I have a low body fat percentage now and I notice my feet are struggling to take the weight without shoes or socks but they're still working alright atm. I eat well and exercise and do no intoxicating substances whatsoever so I'm quite boring now, but I'm honestly surprised I'm not in a worse way tbh. I think what saved me is the injections even though I was guessing, avoiding high blood sugars prevented quite a few things. The downside is due to the amount of hypos and how often I had them, plus the drugs, my brain is a little bit off. I'm not as sharp as I was, and I get brain fog and if I don't sleep I just feel not really myself. But when I'm between 5-8 and I've slept and everything is going well I feel quite good tbh. I still haven't mastered carb counting, I believe I'm close to 1 unit per 10g, but it seems to fluctuate so I still have hypos and the libre is only near accurate or trending correctly about 1/3 of the time but it's helped massively in getting it into range and I was probably out of range by a few for a long time so I've noticed I feel much healthier since using it. Hope you enjoyed the story, I've never really told anyone before so there it is. I'll post a pic of my libre readings so you can see what I run out at now and any advice on nailing this carb counting so I'm having as little hypos as possible would be great, if there's some trick or system or something to refining it. Also feel free to comment on the libre data your honest opinions even if it's different. I believe it's quite good but I do still have hypos just not as many. Anyway, peace.

 

[jasmith1990]

That's my average libre reading over 90 days, sometimes the hypos go up or down to 16% or down to 14%, I'm trying to get them under 10% at the moment and any advice would be helpful. My mum always said I should tell my story to someone it might help them or just be interesting to people to hear what that version went like.

 

[Jaylee]

Hi @jasmith1990 ,

Welcome to the forum.

That’s quite a “shopping list” substances you managed to cut out. Well done for that. I can’t have been easy.

I’m not going to knock your graph either. Great going getting back on track.

The hypo unawareness, that’s a concern. Have you spoke to with your diabetic consultant team on this issue?

Regards,

Jay.

 

[jasmith1990]

Hi @jasmith1990 ,

Welcome to the forum.

That’s quite a “shopping list” substances you managed to cut out. Well done for that. I can’t have been easy.

I’m not going to knock your graph either. Great going getting back on track.

The hypo unawareness, that’s a concern. Have you spoke to with your diabetic consultant team on this issue?

Regards,

Jay.

Yeh, so they think 15% is too high and want it under 10 so I'm aiming to get to that. They don't really know how in depth it actually is to get it into that 4-8 range. Especially with a bi phasic insulin curve that requires two injections. Every time I eat carbs I have to time the first and second perfectly, and all the various carbs release at different times. So I've spent time getting the timings right and I try to not change my diet too often. And then the libre is often out and says I'm below 4 when I'm above it, especially in the first 48 hours. Ideally I'd like to run my body as it would be with a working pancreas, I don't mind injections, it's just the timings and carb counting because that changes as well. If you follow the same amount that works on one for another it's off, so I dunno if those carb amounts are wrong or what but sometimes even on different days the same food behaves different. I'm also on fiasp which releases in about 4 minutes so it's good for sorting out peaks and stuff if it's under the right amount but you also have to time it bang on or you drop low cause it works so fast. Also carbs drive your sugars up fast when they go into motion so it's like a game really. Also i noticed if I go into swinging iceberg shapes it's harder to smooth out once it goes into the swing. I have to get it as bang on as possible with the timing and amount for both injections.

 

[EllieM]

Thanks for sharing your story @jasmith1990 .

I've had some experience with losing hypo awareness because I was having too many hypos, and I regained it by keeping my levels above 6 for a while (weeks not months, and at the suggestion of my consultant). I definitely lose hypo awareness if I get too many hypos so I have my alarms set so that I get a warning when my bg is at 4.4, which allows me to fend off hypos.

But having said that I'm not trying to keep myself in the 4-8 range, more like 4-10.

Have you talked to your team about possibly getting a pump???

 

[jasmith1990]

Thanks for sharing your story @jasmith1990 .

I've had some experience with losing hypo awareness because I was having too many hypos, and I regained it by keeping my levels above 6 for a while (weeks not months, and at the suggestion of my consultant). I definitely lose hypo awareness if I get too many hypos so I have my alarms set so that I get a warning when my bg is at 4.4, which allows me to fend off hypos.

But having said that I'm not trying to keep myself in the 4-8 range, more like 4-10.

Have you talked to your team about possibly getting a pump???

I couldn't really see the benefit of a pump as it's just like doing an injection that's permanently attached to your skin. What are the benefits of a pump apart from saving time?

 

[EllieM]

I couldn't really see the benefit of a pump as it's just like doing an injection that's permanently attached to your skin. What are the benefits of a pump apart from saving time?

I'm not a pump user myself but a lot of people swear by them. In my (limited) understanding, they allow you to set different basal rates at different times of day, and also to suspend insulin when hypo. Then some people make their systems loop, or almost loop? A disadvantage is that you have to do a lot of work to get your rates right, but it sounds like you already do that?

 

[Jaylee]

Yeh, so they think 15% is too high and want it under 10 so I'm aiming to get to that. They don't really know how in depth it actually is to get it into that 4-8 range. Especially with a bi phasic insulin curve that requires two injections. Every time I eat carbs I have to time the first and second perfectly, and all the various carbs release at different times. So I've spent time getting the timings right and I try to not change my diet too often. And then the libre is often out and says I'm below 4 when I'm above it, especially in the first 48 hours. Ideally I'd like to run my body as it would be with a working pancreas, I don't mind injections, it's just the timings and carb counting because that changes as well. If you follow the same amount that works on one for another it's off, so I dunno if those carb amounts are wrong or what but sometimes even on different days the same food behaves different. I'm also on fiasp which releases in about 4 minutes so it's good for sorting out peaks and stuff if it's under the right amount but you also have to time it bang on or you drop low cause it works so fast. Also carbs drive your sugars up fast when they go into motion so it's like a game really. Also i noticed if I go into swinging iceberg shapes it's harder to smooth out once it goes into the swing. I have to get it as bang on as possible with the timing and amount for both injections.

OK.? I use (alongside the Libre link app.) an app called Diabox.
Now I’m still hypo aware after 46 years of diabetes. (I don’t claim to be an expert.)
But the app (for me. Due to the L2 algorithm.) is like using a CGM (No scanning.) can predict a low upto 10 minutes in advance with a customisable alarm. At first I thought now way it’s faulty.. but then my early symptoms came on. Pre-eating a low (always check with your meter too.) can minimise it’s effects.?
What I also found is the Libre (I’ve used one & two.) can be slow to respond coming back up.. This is where the meter comes in.) during lows that might last an hour with the libre, take notes saying “the meter says I’m now.”
You may even feel back in “the zone” before the meter says so. But that “so” from the meter is always before the Libre on the way up. It’s been well documented. Libres lag behind a climb from a hypo.

I’m rooting for you eventually getting your privilege to drive back.

 

[RoughcutAU]

Wow! Thanks so much for sharing your story! Its alot of information to digest. I am only just a year into my T1D journey so probably don’t have much useful advice though did want to say you have done an amazing job turning your life around … its definitely not easy and its never to late to enjoy some of the benefits to quality of life.

A participant in the DAFNE course I did a few months ago had the issue with bi phasic insulin and i can’t imagine dealing with the extra complexity of it when sometimes I can’t get a regular carb count right!

Onwards and upwards mate!

 

[jasmith1990]

I'm not a pump user myself but a lot of people swear by them. In my (limited) understanding, they allow you to set different basal rates at different times of day, and also to suspend insulin when hypo. Then some people make their systems loop, or almost loop? A disadvantage is that you have to do a lot of work to get your rates right, but it sounds like you already do that?

Wouldn't that mean you'd have to eat exactly the same times and have exactly the same routine every day though?

 

[jasmith1990]

OK.? I use (alongside the Libre link app.) an app called Diabox.
Now I’m still hypo aware after 46 years of diabetes. (I don’t claim to be an expert.)
But the app (for me. Due to the L2 algorithm.) is like using a CGM (No scanning.) can predict a low upto 10 minutes in advance with a customisable alarm. At first I thought now way it’s faulty.. but then my early symptoms came on. Pre-eating a low (always check with your meter too.) can minimise it’s effects.?
What I also found is the Libre (I’ve used one & two.) can be slow to respond coming back up.. This is where the meter comes in.) during lows that might last an hour with the libre, take notes saying “the meter says I’m now.”
You may even feel back in “the zone” before the meter says so. But that “so” from the meter is always before the Libre on the way up. It’s been well documented. Libres lag behind a climb from a hypo.

I’m rooting for you eventually getting your privilege to drive back.

Yeh, I did read something about there being apps you can use in conjunction with it to get it more on point. I'll have a look into it. Sometimes I get a good sensor twice in a row, and then sometimes I've had to get rid of two sensors in a row after a few days of use so it's never the same really. Appreciate the comment about the license. How is your body after 46 years if don't mind me asking?

 

[jasmith1990]

Wow! Thanks so much for sharing your story! Its alot of information to digest. I am only just a year into my T1D journey so probably don’t have much useful advice though did want to say you have done an amazing job turning your life around … its definitely not easy and its never to late to enjoy some of the benefits to quality of life.

A participant in the DAFNE course I did a few months ago had the issue with bi phasic insulin and i can’t imagine dealing with the extra complexity of it when sometimes I can’t get a regular carb count right!

Onwards and upwards mate!

No worries. Hope it makes you feel better hearing all that and knowing I'm actually still in relatively good shape. What saved me was keeping highs to a minimum from the age of about 16-17. So the last 15 years. I only took risks with that in the first 6. You're only a year in so you'll be more than fine if you keep your sugars below 10. Would recommend exercise as well, that did a lot for me.

 

[Deleted member 527103]

Wouldn't that mean you'd have to eat exactly the same times and have exactly the same routine every day though?

No.
Whilst the pump allows you to have different basal settings at different times of the day, you still have to carb count and dose for your bolus (through your pump).
You can change your basal pattern if, for example, you are unwell, have a lazy day (or more exercise one day), are stressed, etc.
You can suspend your basal when your levels start to fall to stop the drop before you reach hypo levels (some closed loop systems do this automatically).
But you can also use the pump to give you more bolus freedom. You mentioned that you split your insulin and have to inject twice for your meals. With a pump you can do things like give yourself 40% of your bolus at the start and then split the rest over the next 4 hours.
And you can give yourself far lower doses of insulin - down to 0.05units at a time.

I have had a pump for 6 years and experience less hypos now. I use the basal suspend when I got to the gym and increase my basal when I go to the climbing walls. I suspend my basal if my levels are below 5 and falling. I use the combo-bolus function for most of my meals. I give myself small bolus corrections when my levels start rising. Abd all of this is controlled via an app on my phone so no need for insulin pens and needles.

It is not all smooth sailing - I have to carry around more gubbins in case the pump fails and I probably spend more time tweaking my levels and adjusting my basal patterns.

 

[Jaylee]

Yeh, I did read something about there being apps you can use in conjunction with it to get it more on point. I'll have a look into it. Sometimes I get a good sensor twice in a row, and then sometimes I've had to get rid of two sensors in a row after a few days of use so it's never the same really. Appreciate the comment about the license. How is your body after 46 years if don't mind me asking?

The license. Had a bit of bother retaining mine a few years back with macula oedema. Seems clear now after treatment.
The rest of me? Still fully functional.

 

[jasmith1990]

No.
Whilst the pump allows you to have different basal settings at different times of the day, you still have to carb count and dose for your bolus (through your pump).
You can change your basal pattern if, for example, you are unwell, have a lazy day (or more exercise one day), are stressed, etc.
You can suspend your basal when your levels start to fall to stop the drop before you reach hypo levels (some closed loop systems do this automatically).
But you can also use the pump to give you more bolus freedom. You mentioned that you split your insulin and have to inject twice for your meals. With a pump you can do things like give yourself 40% of your bolus at the start and then split the rest over the next 4 hours.
And you can give yourself far lower doses of insulin - down to 0.05units at a time.

I have had a pump for 6 years and experience less hypos now. I use the basal suspend when I got to the gym and increase my basal when I go to the climbing walls. I suspend my basal if my levels are below 5 and falling. I use the combo-bolus function for most of my meals. I give myself small bolus corrections when my levels start rising. Abd all of this is controlled via an app on my phone so no need for insulin pens and needles.

It is not all smooth sailing - I have to carry around more gubbins in case the pump fails and I probably spend more time tweaking my levels and adjusting my basal patterns.

OK, I might give it a go, I like the the fact you can do less than a unit cause I've been complaining about that with these fiasp pens, cause even with what I had before you could do .5 of a unit if you did some little trick with the pen you loaded the cartridge into.

 

[jasmith1990]

The license. Had a bit of bother retaining mine a few years back with macula oedema. Seems clear now after treatment.
The rest of me? Still fully functional.

So has anyone on here tried vitamins, cause I honestly believe they have fixed me. When I researched every vitamin for nerves and blood circulation and got the highest dose of all of them online and did it in conjunction with exercise and after 18 months the improvement was way better than I expected and I think it'll still improve. So have you tried ones for your eyes, cause I have background retinopathy but nothing serious enough to bother with these days. And I take ones for the eyes anyway. It costs a few hundred to get them all but just wondering if anyone tried it.

 

[jasmith1990]

Cause before that, it actually felt like I had tiny stilts on the end of my ankles, like my feet were started to feel like they weren't on my legs. And now they're virtually back to normal, so when it says you can't reverse neuropathy, I'm not so sure that's true. Like all the pain stabs I was getting have gone as well. They only time I feel it now, and it still isn't as bad, is if I'm out of range or I haven't slept enough hours or both.

 

[jasmith1990]

I used to get in the bath, when it was at it's worst and shower my feet with hot water to warm them up. Then I'd get out and 30 mins later they'd be cold again. So I can only tell people what I've experienced, and this to me is like the thing they never tell you because logically it was the only thing that made sense. The Drs prescribe all these things that don't even necessarily help your body. Humans are supposed to operate on things from the earth that occur naturally. All these human amalgamated things they give you aren't always benefitting your body, it's like a temporary fix.

 

[jasmith1990]

I honestly believe the Drs don't even know stuff. Like I didn't even know about a biphasic insulin curve, no one told me that in 19 years which means I was doing my insulin wrong for 19 years. Now I just do my own research and do things with natural vitamins and plants, and as long as I have something like a libra to see what it's doing I can mostly get through it. The only things I do through them are my eye test and my kidneys and stuff. That's it, and if i need antibiotics for an infection. It's the same with the dentist, I don't go to the dentist either anymore. Firmly believe they just mess you up to make money.

 

[Deleted member 527103]

OK, I might give it a go, I like the the fact you can do less than a unit cause I've been complaining about that with these fiasp pens, cause even with what I had before you could do .5 of a unit if you did some little trick with the pen you loaded the cartridge into.

Reusable half unit pens (NovoEcho) are available for all NovoNordisk insulin including Fiasp.
Pumps are expensive and you may struggle to justify the extra cost when all you need is half units