20 years T1 & fed up :(

[ezzycozzy]

Hi there,
I'm a 40 year old woman with 2 young children. I've been diabetic since I was around 20. I was travelling in Australia at the time and ended up in a Sydney hospital with this diagnosis.
I'm not a good diabetic. I take 3 injections of Novorapid a day and 16 units of lantus at night. I eat the wrong things, I snack between meals which pushes up my sugars. I drink wine most evenings, after the wine I eat more rubbish. I rarely test my BM's (when I do they are anywhere between 2.5 and 24) You get the picture.
I exercise regularly, going to the gym for high cardio 5 times a week. My weight is 12 stone and I'm 5ft 8.
I have had slight numbness in my left foot for around 4 years. My Hba1c is always around 80
I am basically fed up. I have my own health and well being to take responsibility for but I just cannot seem to find motivation for change.
I do not carb count. I vary how much insulin I have by roughly guessing how many units I need. Reading this back to myself I sound pathetic. I feel that I need support from somewhere but I don't know where to turn. Every time I go for a hospital review I see a different consultant and different nurse. Could someone please give me some words of advice or the kick up the backside that I need? To be honest I think I need to hear from someone who has been here & to tell me what the harsh truth is about this reality I'm facing if I don't get my act together. Thanks for listening.

 

[Thebearcametoo]

You know what, in amongst everything else you’re doing amazing with the exercise. Well done!

Are you in the UK now?

You know that carb counting would help. Have you been on a course? If you find it overwhelming then start with breakfast as that’s usually fairly consistent in what we eat. Work out the carbs for that and give the insulin accordingly and see how it goes. If you can start the day with good glucose levels it helps if things slip a little later. You know things can improve and you know what you need to do. We’re here to help and support you. Some of that may be blunt, some gentle.

and get your foot seen to!

 

[ezzycozzy]

HI

You know what, in amongst everything else you’re doing amazing with the exercise. Well done!

Are you in the UK now?

You know that carb counting would help. Have you been on a course? If you find it overwhelming then start with breakfast as that’s usually fairly consistent in what we eat. Work out the carbs for that and give the insulin accordingly and see how it goes. If you can start the day with good glucose levels it helps if things slip a little later. You know things can improve and you know what you need to do. We’re here to help and support you. Some of that may be blunt, some gentle.

and get your foot seen to!

Hi, Thanks for your reply. Yes I'm in the UK now, I was just travelling after uni a long time ago!
Yes I did the carb counting course around 10 years ago. I did tell my nurse on last hospital check that maybe I need to revisit it, or maybe I just need to actually apply it!
I think I find that because I do a lot of cardio, my BM's can come crashing down many hours after the gym, so for that reason I probably allow myself to run at 14 or 15 when I'm anticipating a low later on. I wouldn't dream of going into the gym for a cardio session with a BM of anything under 10 as I know it would soon come down with the exercise. That said, it is no excuse for eating all of the wrong things at other times. (which is when I'm correcting BMs of 18-22)
Consultant knows about my foot and just does the 'tickle test' as I call it every time I go. ("look away, can you feel this?") During the day, 2 toes feel like they have a plaster on but at night the foot feels as if I've walked around town all day in high heels, it is more like a throbbing ache. I don't believe there is anything that can be done, other than me getting my control in order. Like I say, I think I need to hear a worst case scenario from someone who knows. It shouldn't be like that, but it's where my mindset is right now...

 

[trophywench]

There's an online 'carb counting and dose adjustment' course anyone can do if they want to, and also you can do a series of tests to check to see whether your basal insulin dose is keeping you steady throughout the full 24 hours daily - if that isn't as right as it can be, we're on a bit of a hiding to nothing trying to get the bolus insulin for food, right.

Do you want the links to those?

 

[trophywench]

If it's any help, I know someone who ignored her T1 just cos she couldn't be bothered who is now registered blind and is still moaning how hard it all is having received a kidney transplant he mother donated, which she basically killed by still not looking after herself and subsequently received a kidney and pancreas transplant but you know what? That means you have to drink an awful lot of water and take tablets and she really didn't enjoy that either …...

 

[ezzycozzy]

If it's any help, I know someone who ignored her T1 just cos she couldn't be bothered who is now registered blind and is still moaning how hard it all is having received a kidney transplant he mother donated, which she basically killed by still not looking after herself and subsequently received a kidney and pancreas transplant but you know what? That means you have to drink an awful lot of water and take tablets and she really didn't enjoy that either …...

Hi, yes I would love the links to those please. I think I need a fresh approach and as you have also provided, a good wake up call. I can't blame anyone but myself for where I'm at right now. I need to go back to basics but create some lifelong good habits that have slipped away along time ago. Throughout both pregnancies I proved to myself that I could achieve good control. As basic as it sounds I have just tested my blood before my tea for the first time in bloomin ages 10.2

 

[Thebearcametoo]

Yay well done for testing. The carbs and cals book and/or app are helpful or there are other carb counting tools that can make life easier. You can improve your HBA1C relatively easily given your start point.

 

[trophywench]

Basal testing - https://www.diabetes-support.org.uk/info/?page_id=120

Course - https://www.bertieonline.org.uk/

 

[rebrascora]

Hi and welcome.

Firstly, you have young children and that is a huge responsibility so it must be very difficult seeing to their needs and then having to motivate yourself to sort your own diabetes out. The thing is that they want a mother who is as healthy as she can be, so part of your responsibility to them is to look after yourself. You are doing great with your exercise but your food and insulin regime is a bigger issue and is going to need commitment.
It doesn't sound like this is burn out where you have been trying really hard for a long time and hit a brick wall but perhaps just that you have never put much work into your diabetes management (from what you say) and got away with it until now (although I thought that during pregnancy you have to keep tight control, so maybe I am wrong there). If you managed your levels well during pregnancy then, then see if there was anything during that time which you could implement again now.

I would say that the first thing to start with would be basal testing. When was the last time you adjusted your basal insulin?
If your basal insulin does is not right then you are just using your NovoRapid to fire fight your levels.

I find that eating low carb really helps to prevent huge BG swings and minimizes the amount of insulin I need. It took a bit of getting used to after a lifetime of filling my plate up with carbs but it is an enjoyable way to eat once you figure out what to buy and how to cook it and increase your fat intake to make up for the calories you are no longer getting from carbs. I appreciate that most Type 1s do not follow a low carb diet because they are encouraged to "eat normally" but I can certainly recommend it and not just for yourself but maybe a healthy step for the whole family. There are a lot of Type 2 diabetics on the forum who follow a low carb diet to control their diabetes and some Type 1s like myself, so plenty of people to seek advice and tips from if you are interested in trying it out. Carb counting is really important but if you are only having small portions of carbs, it is much easier to get it right.

As regards exercise, I wonder if something less exertive might be beneficial instead of all those high intensity work outs. If your BG levels are high whilst you are working out, I believe that can increase the health risks. A brisk walk or cycle ride in the park/countryside perhaps with the children, instead of some of those intensive workouts might be more beneficial, both physically and mentally... getting out in the daylight and fresh air is really stimulating. And perhaps you would feel more confident of going out with a lower BG for that type of exercise, where you can easily top your levels up with a handful of dried fruit and nuts if you are going low.

It may also be worth asking your consultant if there is any technology which might help you get better control. Perhaps the Freestyle Libre might make you more confident of running your BG levels lower as you can test so much more frequently and easily than finger pricking.

Anyway, just a few things to consider. I hope we are able to support you in finding a way that works for you.

 

[atoll]

get testing ,consistent blood sugars above 10mmol will make you feel rubbish,lethargic and are bad for longer term health.
yoyoing is not good either with regular hypo's
testing is the only way to get an accurate picture of glucose levels throughout the day, and correct insulin needs in relation to calorie intake.

moderate exercise,even if just a short walk every day will boost those endorphins,reduce insulin resistance and improve control.

alcohol is an inflammatory,and also has lots of calories,which can lead to dependency,not dependency per say on the alcohol but dependency on the sugar boost the drink gives you.

try neat whiskey instead in moderation for an evening tipple instead of glasses of wine,
drink tea and water for hydration.

maybe taking more lantus and twice daily might help,and less novarapid.
.metformin sr I found also helps with control,speak to your specialist.

lots of reasons for numbness in the extremities,get your cholesterol checked
long term elevated blood sugars and higher Hb1ac reduce circulation ,damage nerves etc

these are my own observations as a T1,for 35 yrs since i was 19. with
every diabetic has to control the condition in their own way,and control it you must,or it will control you.

 

[Tee G]

Hi. It sounds to me like the left half of your brain is fighting the right half (or vice versa!) Either way you are having a battle of emotions with your intellectual self. On one hand you recognise and KNOW what to do for your safety and long term health but your emotional side just wont let you do it.

My advice - either get some counselling to find out why this is happening. Or confide in a good 'listening' friend to spill it all out too - or... Give yourself a darn good shake, make a plan and get going with it. I would encourage you to sit down, do a meal plan for the week. For you and the family. I do with mine and hubby and just make a few tweaks... (where i have cauliflower mash/ he has normal. if he has chips, i only take 5 and fill the rest of my plate with veg. I dont scare myself at the prospect of never eating anything thats 'bad' for me, I have it, just a tiny amount to see me over the hump. If I didnt i would go mad. I try to go at least one meal a day carb free (a salad and protein) - Maybe try this for a fortnight - nothing longer and see how it goes. If you manage it then extend it a week at a time until you become accustom to it. You really do need to start looking after yourself now. If you dont, then how can you look after others? They need you, you need you. Please take care of whats important - and thats you!

 

[Flower]

Hello @ezzycozzy and welcome, glad you found us 🙂

Coming on the forum and joining us lot who 'get' diabetes is an excellent step. Don't think of yourself as 'not a good diabetic', you're having a tough time and juggling diabetes along with general life/families is a struggle. Reading what others on here are doing has helped me so much to get a better handle on things.

As already suggested start with basal testing, if you can get your background insulin as good as possible the rest will work a lot more predictably. Things like prebolusing just by a few minutes works for me so the insulin is on its way before the food starts the journey, cautiously experimenting with timing of boluses has helped me to iron out some post meal spikes. Having a refresh of carb counting and making a batch of meals that you like where you know that the meal is 40g carbs without having to guess or work it all out again will help. Use kitchen scales to weigh food and eliminate the guess work out of insulin to carb ratios, record your glucose before a meal/how much insulin you took and when/then test 2 hours after and record what happened. It really helps to build up a record of what is happening then you can focus on what isn't working so well rather than just seeing a big mess.

I know its difficult but try to make time for your diabetes just a few minutes a day to test, record and plan meals so that you you start to feel more in control and less fed up with the whole thing. It is doable and a much better motivation to sort things rather than a list of complications that may or may not ever happen.

Let us know how things go 🙂

 

[Thebearcametoo]

How are you doing today @ezzycozzy

 

[ezzycozzy]

How are you doing today @ezzycozzy

Hi again,
Thanks for asking...Well it's back to basics. I've promised myself regular testing and am doing so far. I upped my lantus last night by 2 units which didn't result in a night time hypo, so will maintain that for this week to monitor. I'm feeling a bit under the weather so am bearing that in mind with sugars. It really is nothing difficult I have to deal with, it is just getting my act together. I think I have taken the approach over these years of a 'diet' and I keep throwing in the towel. I need to look at my food intake as a change of regime that is suited to being diabetic and is not a 'diet'. I have had a low carb lunch. I am thinking of booking an appointment with a local councillor. I need to address my eating/drinking patterns as much as anything. I will often binge eat at the end of the day, too many times telling myself that I've earned it by spending an hour at the gym. In that way I feel as if my obsession with the gym (for want of a better word) is doing me no favours as again, such self reasoning links itself to a 'diet like' state of mind.
I am going to implement carb counting & I have put a chart on the fridge to record my BM's etc.
New Beginnings...

 

[Thebearcametoo]

For now concentrate on the carb count rather than what you’re eating as getting your glucose levels under control will help with food cravings. Although obviously if you can make better food choices then do.

 

[everydayupsanddowns]

I am going to implement carb counting & I have put a chart on the fridge to record my BM's etc.
New Beginnings...

We are right behind you @ezzycozzy

Great to see you have got stuck in straight away. You’ve already done the hardest thing... you’ve made the decision to try to turn this around - and importantly you’ve posted it here and joined a community of folks who are facing the same frustrations and challenges every day.

you can do it! Even small improvements make a huge difference. And it’s wise to try to gradually improve things rather than jumping in with sudden changes. So take your time and focus on things one by one. 🙂

 

[ezzycozzy]

Well, just to provide an update for anyone who might have been reading this or has an interest based on their own experiences, I can report that 2 weeks on I have made significant improvements! Mainly simply down to going back to basics, but I am testing 4 times a day, logging BM's etc. Making conscious efforts not to binge eat junk food also. BM's now ranging 4-11 (which is incredible for me! I was always correcting BM's in excess of 20 on a regular basis) I have had a couple of hypos but with logging them it's obvious I have had a little too much insulin at lunchtimes. I am very sensitive to insulin with a unit of 1 making all the difference. I've upped my Lantus by 2 units and am waking now around 5 or 6. Amazing!
Early days yet, but for anyone in a rut, and feeling things getting you down, simply going back to basics has done me the world of good. 🙂

 

[Docb]

Brilliant ezzycozzy - solution to a lot of things is to do the simple things and do them well. Keep it up.

 

[SB2015]

Well, just to provide an update for anyone who might have been reading this or has an interest based on their own experiences, I can report that 2 weeks on I have made significant improvements! Mainly simply down to going back to basics, but I am testing 4 times a day, logging BM's etc. Making conscious efforts not to binge eat junk food also. BM's now ranging 4-11 (which is incredible for me! I was always correcting BM's in excess of 20 on a regular basis) I have had a couple of hypos but with logging them it's obvious I have had a little too much insulin at lunchtimes. I am very sensitive to insulin with a unit of 1 making all the difference. I've upped my Lantus by 2 units and am waking now around 5 or 6. Amazing!
Early days yet, but for anyone in a rut, and feeling things getting you down, simply going back to basics has done me the world of good. 🙂

Well done ezzycozzy. Great to hear of such an impact from all the changes you have made.

Like you I am very sensitive to insulin and I found it very helpful when I switched to a half unit pen. At the time they were intended for children, and came with stickers to put on. They now seem to be more widely available. It just made altering doses a lot easier.

 

[trophywench]

I was just about to suggest a half unit pen - it's one of the things that is the next best to having a pump, where if we need an extra or minus a tenth of a unit, we can do it. Mind you most of our carb counting just isn't that precise - but when the pump calculates the insulin you need based on its current knowledge right now, it often comes up with answers with tenths on the end.