Struggling with type 1

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CodyBee

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Type 1
Hi everyone, I'm new to the forum but not to diabetes after being diagnosed in 2001 aged six.

A little background, I was diagnosed with Nephrotic syndrome at 18 months old and treated with high dose steroids for 15 years until I went into remission. The steriods caused me to develop diabetes aged 6. Being born very premature I battled meningitis twice as a child, sepsis many times most recently in 2020 and have a rare auto immune condition that causes allergic reactions but I'm not allergic to anything. All while suffering from the pretty obvious depression.

As a child my diabetes control was always bad, my doctors would be changing my insulin as soon as a new one was developed because my body becomes intolerant to it very quickly. From a young age I have been on very high doses of insulin 30+ units of long lasting and up to 45 a day of quick acting. My Hba1c has always been high at one point off the charts.

I'll be honest and say over the last 10 years I have really struggled with my diabetes, my family are not supportive even when I have been hospitalised with DKA or even unrelated sepsis they generally brush it off because I'm always ill.

I'm a very independent person, I live alone with my cats and hold down a good job but I really suffer with depression too. I have had private counselling but I think it's something I'll always live with it is just very hard to look after my health when I am struggling to take care of myself.

In recent years I have been making a real effort to improve my diabetes, I have a CGM and keep a detailed log of my food intake and insulin etc my Hba1c has halved in just over 2 years but is still very high, most recently (25.08.22) it was 79 so yes very high but was in the high hundreds before. I have experience issues with my sight because of this but again I am really trying to get better. It's so difficult to live with everyday knowing there is no end in sight with diabetes.

At the moment I take 26 units of tresiba in the morning and on average 4 units of novarapid with my meals. I barely eat at night because I'm so tired from work which is really having an impact on my overall health, I am B9 deficient and my kidney function is impaired mainly because of my kidney disease but also my high Hba1c.

I'm terrified that I've left it too late and now have irreversible damage. I'm only 27 but I'm exhausted. I don't know how to keep going when I have no one in my corner.
I'm back at hospital in a week to discuss having a pump which I don't want but I know I need so will fight through my own mental wall and do this for my own good if my doctors approve. I know I need to get help for my depression but I just don't have the energy. All I do is work and sleep. I don't know when I last felt well or happy. I just don't want to let my diabetes get any worse.


Sorry for the long message I guess I'm just feeling lost at the moment.

Thank you for reading.
 
Oh bless you you’ve had a lot to deal with.

What is it about the pump that you don’t want one?

When you talk about taking a lot of insulin you take less than my 12 year old so I don’t think you are using lots and if you need more you need more. You’ve said what your HBA1C is but what are you BG reading like during the day?
 
Welcome to the forum @CodyBee

What a rough time you’ve had with it all, but your determination is inspiring.

And what amazing progress you’ve been making! I get the feeling that with diabetes no effort is ever wasted. You’ve already done amazingly to reduce your risks and hugely improve the chances of any complications of your diabetes stabilising, or even improving.

I was ‘pump averse’ for years and years, but eventually having worked and worked on my MDI skills and significantly improved my BG management outcomes, I realised that I had two ’what to do next’ options.

One was to switch my basal insulin for split Levemir, and the other was to switch to a pump (despite my continued reservations), and see if it worked for me like it seemed to work for everyone else. I figured I’d give it a year or two, and if it didn’t work I could always swap back!

So I took the plunge.

I had a brief jaunt back to MDI recently for a handful of days, and was reminded what a comparatively blunt instrument it was for me.

I’m now about 10 years into my pump experiment. And I really appreciate the flexibility, adaptability and precision it has offered me. Plus the hybrid closed loop semi-automation, of course!
 
If it helps at all, I recently started on a pump, and I didn't particularly want one in the beginning either. I think my exact words were: never. Well, it turns out actually, now I really like my pump and would not swap it and it's helping me a lot. Have a chat with the DSN and see what they say, and ask all your questions, see if you can see samples of the pumps and talk through how they work - the main thing is to pick a pump that will work well for you. If you need to know more about any of them, ask on here, people are very helpful and have a lot of experience. And if you try it and you really hate it, you can go back to injections - so perhaps there is nothing to lose from giving it a go? Diabetes is really bloody hard work, try to be gentle with yourself. Wishing you the best.
 
Thebearcametoo said:
Oh bless you you’ve had a lot to deal with.

What is it about the pump that you don’t want one?

When you talk about taking a lot of insulin you take less than my 12 year old so I don’t think you are using lots and if you need more you need more. You’ve said what your HBA1C is but what are you BG reading like during the day?
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Hi, thank you for your reply.

I think my worry with the pump is the fact that I have to wear it all the time, I think it freaks me out a bit as I used to have a lot of cannulas as a child and the tubing has always made me uncomfortable but with an injection once it's done its done.


My blood Glucose is like a roller-coaster I can be as low as 2.3 and up to 25 in one day while eating pretty much the same food every day not the healthiest food granted but lately a lot of salads and soup but still massive changes in my readings. I have recently been told to drop my tresiba from 28 to 26 and since then I have been having a lot more high reading and feeling more ill with them than previous. Now I feel nauseous and thirsty at 13.0 but before I could be as high as 20 and not feel any different. I feel hypo at anything below 5.

It's such a hard battle.
 
Hi and welcome from me too.

So sorry to hear that you are struggling and not getting much support from your family. I think it is quite hard for other non-diabetic people to fully understand the relentlessness of it all. Thankfully you have come to the forum, as here we all understand because we live with it meal by meal and night by night and each time we exercise or drive the car or have to go somewhere and need all that extra planning. Keeping yourself safe with insulin is a big responsibility and it takes up a lot of bandwidth in your brain as someone recently put it.If other aspects of life are also challenging or stressful, it just doesn't give to any leeway or breathing space.

The forum can provide you with a lot of practical tips and tricks to help manage particular issues with your diabetes and I have learned more from this forum than any other means but something which was instrumental in giving me confidence in managing my diabetes and adjusting my basal insulin was an intensive education program like DAFNE (Dose Adjustment For Normal Eating) It is so much more than the title suggests ie. carb counting and is more about keeping you safe in all sorts of real life circumstances. One of the big benefits of the course is spending a week with other diabetics and learning from each other. Some people on my course were fairly newly diagnosed like myself but one guy had 15 years experience and another lady had clocked up 50 years. We all had different issues with our diabetes management and learned how to problem solve for each other's difficulties. It also means that you get a week with a very highly qualified DSN and dietician going through your results each day and helping you to identify patterns and problem solve them and gives you a framework to follow for after the course. I believe that many people who are diagnosed as children seem to get overlooked for a DAFNE course as they become adults and independent, so worth asking about if you haven't done that.

I appreciate that you have problems with developing allergic symptoms to insulins but it is helpful to understand how each basal insulin works, the profile and length of it's activity and understand your own basal needs and assess whether that basal is helpful to you or not..... For instance, Tresiba has a very long flat profile over about 36 hours which means that it trickles out the same amount of insulin day and night and each dose tops up the next one. If your liver trickles out nice uniform amounts of glucose day and night then Tresiba is going to work well for you but if you are like me and need much less basal insulin during the night than you do during the day, I would need to adjust the dose to the level that prevented me from hypoing during the night and held me steady but then I would have to fire fight my levels with corrections of quick acting insulin during the day to keep me in range.... which I find really frustrating. Levemir on the other hand is much shorter acting (about 16hours) and has a peak of activity and you take it twice a day. This means that you can adjust the night time dose separate of the day to suit your body's needs a bit more closely. You can also adjust the time you take each dose so that the peak of activity coincides with when you need most from it. It takes a bit of working out and probably sounds quite complicated but once you understand how your body works and how you respond to the insulin it becomes quite intuitive. I see basal insulin as a bit of a dark art. Getting it right makes all the difference in the world to your diabetes management and everything makes sense. The problem is that many people believe that their basal dose is set by their clinic and doesn't need any further adjustment and all they need to do is carb count and apply their carb:insulin ratios, when in reality basal needs change quite a bit according to the amount of exercise or activity, illness, seasons, length of day, ambient temp, hormones etc. With Tresiba being long acting, it doesn't allow you to adjust it very often or easily because it takes 3 days for any changes to fully manifest, whereas I can change my Levemir doses on a day by day or day to night basis if I need to and Libre gives me the data I need to see when it needs adjusting. I absolutely love my Levemir for the flexibility it provides especially as I need so much less basal insulin at night than during the day (currently 5 units at night and 24 in the morning) I would hate Tresiba because my body just isn't uniform in it's needs. If I go for a good long walk tomorrow, I can cut my evening dose by 2 units tomorrow night and that will keep me from hypoing during the night. If I go for another long walk on Tues, I can cut it by another 2 units the following night and sometimes I end up not needing any overnight at all if I have had a very active week. If I am then quite sedentary for a few days I dial the dose steadily back up. This is how my body works. If you stick around this forum and read threads and ask questions you will see that other people have different strategies which work for their bodies but understanding what is going on and why certain hypos happen and why levels go high is an important part of managing it and we should be able to help you with suggestions of what to consider and little experiements that you can try to fix problems, but do ask about DAFNE or whatever you local equivalent is.
 
Welcome to the forum @CodyBee .

I am so pleased that you have found us, and opened up about your struggles with managing your diabetes. You have already seen that there is a wealth of experience to tap into on here, with loads of practical tips. Just ask any questions that arise. Nothing is considered silly on here.

You mention that you are now keeping a log of what is going on with your levels. Can you see any patterns in the extreme values? Are there specific foods that cause problems. I know that until I went on to a pump I avoided pizzas as they were a problem on injections. The pumps offer you different ways of delivering your boluses. I used to try splitting the injection but then often forgot to do the second half. Not a problem on the pump as you can tell it to deliver the bolus over a period of time.

All my pumps have been tubed, using the shorter length tubes, but long enough for me to be able to let the pump roam free at night without any problems. The tubing is tucked away during the day so does not cause a problem and often can’t even remember where the cannula is positioned as I don’t notice it. The tubing allows me to put the pump where I want to, often stuffed in my bra but with easy access to do boluses. Others prefer to have the patch pumps, which I have not tried but don’t like the idea of, as I am convinced I would knock it off my arm. We each find what works for us.

Let us know how you get on with the pump discussion. Whichever ones you are offered there will be people on here using them that can help you.
 
CodyBee said:
I'm terrified that I've left it too late and now have irreversible damage. I'm only 27 but I'm exhausted. I don't know how to keep going when I have no one in my corner.
I'm back at hospital in a week to discuss having a pump which I don't want but I know I need so will fight through my own mental wall and do this for my own good if my doctors approve. I know I need to get help for my depression but I just don't have the energy. All I do is work and sleep. I don't know when I last felt well or happy. I just don't want to let my diabetes get any worse.
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Hello and welcome to the forum.
Have a huge (((((((((((((((((((((hug))))))))))))))))))))))) as well, you sure have been through the mill haven't you ?
Well done on getting your A1c down that's a great achievement🙂 Small steps are the way to go and Rome def wasn't built in a day, so you are doing fantastically well.

Pumps:-
Are very 😱 to start with, it's called fear of the unknown which most people feel like when starting to pump or if it's suggested to them.
You will have the oh wow moment once you have your basals sorted out as you will feel well and in control of your diabetes. The quality of life is amazing compared to MDI.

There are loads of pumpers on the forum who will help you out, so ask any questions you want as I'm sure someone can help out 🙂
 
CodyBee said:
Hi, thank you for your reply.

I think my worry with the pump is the fact that I have to wear it all the time, I think it freaks me out a bit as I used to have a lot of cannulas as a child and the tubing has always made me uncomfortable but with an injection once it's done its done.


My blood Glucose is like a roller-coaster I can be as low as 2.3 and up to 25 in one day while eating pretty much the same food every day not the healthiest food granted but lately a lot of salads and soup but still massive changes in my readings. I have recently been told to drop my tresiba from 28 to 26 and since then I have been having a lot more high reading and feeling more ill with them than previous. Now I feel nauseous and thirsty at 13.0 but before I could be as high as 20 and not feel any different. I feel hypo at anything below 5.

It's such a hard battle.
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You can have a tubed pump or a tubeless.
If it helps at all I went on a pump after more than forty years on insulin and after the first few hours I just had to keep checking to see if the pump was there 🙂
It sounds as if you have a basal that is not flat at all, which is how mine is, so having a pump allows me to set the basal by the hour to account for my own basal pattern. There is no basal insulin on the market which matches it 🙂
Also it's fab for when I have to increase my steroid doses can just increase my basal to match.
 
Yes the cannulas are attached to you but it’s not like a cannula in a vein. They’re tiny and can be in places that are hidden and unobtrusive. No worse than the sensor. Tubing is annoying sometimes but mostly it’d be inside your clothing or you could opt for a pod. The ability to deal with changes is much easier with a pump so on days where you’re going low for no obvious reason you could have less basal at the points you need it whereas once your tresiba is in you can’t take any out. It’s fine to take pump breaks if it all gets too much but once it’s set up you will probably find it less intrusive than you think. There’s no getting around that any management for diabetes is a heavy burden and when you’re living with a lifetime of medical poking and prodding it all feels heavy on you.


Have you ever been offered any counselling for all your childhood medical stuff? It can be akin to grief because so much of you life has been dealing with medical stuff and the knock on from it. The NHS isn’t brilliant with what it offers but it can be worth finding someone local and paying for it if you’re able.
 
The 'thing' about insulin pump cannulas that no-one has mentioned so far, is that they don't go into a vein - they go into 'sub cutaneous' tissue - ie in exactly the same kinds of area(s) of the body that insulin pen (or syringe) needles go! Because your bodily need of insulin is split up to only 'drip' in a few units or fractions of a unit at a time instead of a great whoosh of insulin once a day (in other words, what a fully operational pancreas just does automatically without us ever knowing it's doing it) pumps are designed o imitate that delivery. You can do exactly that with mealtime insulin too and set the time specifically over how long you happen to want your dose to drip in for that particular food at that particular time of day, and on the basis that you won't have an identical day tomorrow - do whatever different tomorrow! Or, you can deliver all that mealtime dose upfront in one fell swoop, just as you do with MDI.

When I got my first pump, 13/14 years ago - after a fortnight I was ready to bin it, I was that frustrated with the stupid thing ..... what made me more determined to master it, was my husband who sighed and said 'I knew you'd never get on with it.' Well - I'll show YOU, mister! Cheeky sod. Like waving a red rag to a bull for me. (Of course, he ruddy well knew that, which was why he said it) They're not stupid, they work on logic cos that's what they do - so it just means I have to engage the logical brain cells (in there somewhere) for a bit - and disengage the 'impatient' brain cells.

I got there after a few more weeks and am still happily pumping.
 
trophywench said:
When I got my first pump, 13/14 years ago - after a fortnight I was ready to bin it, I was that frustrated with the stupid thing .....
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Lol I remember that well :rofl:
 
Hi. It sounds very difficult for you. You don't mention your diet or weight? Even though I'm on Basal/Bolus I have to be very careful with my carb intake to avoid skyrocketing BS and I'm thin.
 
Loved pump from day 1 still do, took to it quickly in fact more quickly than expected, pod user so no visible tubing.
 
nonethewiser said:
Loved pump from day 1 still do, took to it quickly in fact more quickly than expected, pod user so no visible tubing.
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Same here. I'm also using the Omnipod, started end of June. I was expecting the switch from MDI to be really stressful, but it's been very straightforward. No major meltdowns or panics. I think I'd been reading about pumps on this forum for such a long time (approx 10 years LOL) that I was better prepared than I realised - thank you, pumpers!

Sending ((((hugs)))) @CodyBee - you seem to have a lot on your plate! But it sounds like you're really determined. Like others have said, if you don't like the pump you can always switch back to MDI. Good luck with the pump appointment next week.
 
Hi @CodyBee

Regarding your kidney issues, what’s your latest GFR? I’m interested to know the history of your kidney issues?
 
nonethewiser said:
Loved pump from day 1 still do, took to it quickly in fact more quickly than expected, pod user so no visible tubing.
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My first pump was a tubes one. We had a love hate relationship. I loved the control it gave me. I hated that my diabetes was on display as I was rarely able to hide it. I usually has my pump around my waist, sometimes in a pump belt which I do nd sweaty (I had a HidIn belt which I found wa the best) and showed a bump on my skin frame or a clipped it to my waistband where is showed and would knock against my hip bones causing bruising when I was carrying a bag.

My second pump is tubeless which I prefer but it is not perfect. I can still see the bump in my clothing, cannot temporarily disconnect it (although I can and do suspend basal) and I have less places to put it between my bony hips and muscly legs. I tried my back but kept knocking it off.

So, for me, like you, tubeless is best and the control is fab, especially as I conveniently control it via a phone app. But we still don't have a love love relationship.
I guess it depends on vanity and body shape
 
Bloden said:
Same here. I'm also using the Omnipod, started end of June. I was expecting the switch from MDI to be really stressful, but it's been very straightforward. No major meltdowns or panics. I think I'd been reading about pumps on this forum for such a long time (approx 10 years LOL) that I was better prepared than I realised - thank you, pumpers!
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Also thought switch would be more stressful after reading that some folk take weeks even months to get use to one.

helli said:
My first pump was a tubes one. We had a love hate relationship. I loved the control it gave me. I hated that my diabetes was on display as I was rarely able to hide it. I usually has my pump around my waist, sometimes in a pump belt which I do nd sweaty (I had a HidIn belt which I found wa the best) and showed a bump on my skin frame or a clipped it to my waistband where is showed and would knock against my hip bones causing bruising when I was carrying a bag.

My second pump is tubeless which I prefer but it is not perfect. I can still see the bump in my clothing, cannot temporarily disconnect it (although I can and do suspend basal) and I have less places to put it between my bony hips and muscly legs. I tried my back but kept knocking it off.

So, for me, like you, tubeless is best and the control is fab, especially as I conveniently control it via a phone app. But we still don't have a love love relationship.
I guess it depends on vanity and body shape
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Agree on vanity body shape.

Being fella not bothered about pump being on show or libre for that matter, didn't hide away when injecting on mdi, surprising how few care about what other people wear or do.
 
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