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Pumping: Is it right that my diabetes is still not under control after nine years.

L

Liz Leigh

Member
Messages
13
Type of diabetes
Type 1
Is it right that my diabetes is still not under control after nine. I am absolutely sick of visiting the nurse. We make changes to insulin pump which work for a few days then back to highs and lows.
I have had enough.
Please some one help.
 
Hi,
Huge hug.
Nine years struggle must be awful. Can you tell us a bit more, do you have any other factors like depression, eating disorder etc or just (ha just!) Diabetes? Where are your levels at? What does your life in general look like?
 
Liz Leigh said:
Is it right that my diabetes is still not under control after nine. I am absolutely sick of visiting the nurse. We make changes to insulin pump which work for a few days then back to highs and lows.
I have had enough.
Please some one help.
Click to expand...

Hi :)

I've been using a pump for more than 12 years and have had Type 1 for more than 20 years. It's a pain and hard work. The books I recommend are Think Like A Pancreas and also Pumping Insulin (the pumpers 'bible').

Can you explain a little more about your problems? Is it your basal that's needing to be changed frequently?
 
Liz Leigh said:
Is it right that my diabetes is still not under control after nine. I am absolutely sick of visiting the nurse. We make changes to insulin pump which work for a few days then back to highs and lows.
I have had enough.
Please some one help.
Click to expand...
I am concerned about the we make changes.
It's you who should be doing basal testing and adjusting your insulin accordingly not the nurse. Perhaps invest in the book pumping insulin as this will help you on your journey.
Some people have to unfortunately put a lot more work into controlling/managing their diabetes than others. It's just the way the cookie crumbles.

So start with some basal testing after Christmas and take it from there.
 
Diakat said:
Hi,
Huge hug.
Nine years struggle must be awful. Can you tell us a bit more, do you have any other factors like depression, eating disorder etc or just (ha just!) Diabetes? Where are your levels at? What does your life in general look like?
Click to expand...
I was initially diagnosed as type 2. Then I had major surgery which resulted in me needing a colostomy. I was then sent for more tests and was diagnosed with type 1. Injections weren't successful in controlling sugars and eventually 14 months ago I was given the insulin pump. I find it better than injections and sugars are better but not good. Some days in twenties then drop to two. I am weary. Keep changing basal which seems to work for few days then all over the place again.
I have depression ( can't think why).
I was told that I shouldn't let my diabetes rule my life but that I should rule it.
Unfortunately the diabetes wins.
 
@Liz Leigh Sorry you're struggling. It will probably be quiet here over Christmas but please do bump this thread so you can get some suggestions from other people after the holiday.

Have you done a basal test? Or are you saying that it seems like your basal is right but then needs changing every few days?

I'm presuming you're confident in counting carbs and adjusting your insulin - have you tried changing your meal time ratios?
 
I have no practical advice to offer as not a pumped. But do feel free to vent here or to me if you need an ear over Christmas.
 
Yes it seems as basal OK then after a few days back to normal.
I have lots of headaches and constantly feel like I have a hangover even when I haven't had any alcohol.
So so fed up
 
Have you had a general health check at the doctors'? Just to rule out any cause not related to diabetes.

If you're feeling rough, then that might put your sugars up (or, of course, it could be erratic sugars causing the headaches).

Having said that, if it was me, I'd be pushing my GP for some input and checks in case there's another cause.

You sound miserable with it all. I do hope you can find an answer and that you feel better soon.

Wishing you the best and a peaceful holiday break.
 
Just a suggestion Liz, have you tried different insulin's to see if that's the cause of your problem. Some people have problems with certain analogue insulin where as they are fine with another and some change over to animal insulin in their pumps or using MDI.
 
That sounds like good advice. I recently had checks as I developed a rash which is the same as meningitis. All tests were negative.
Happy Xmas
 
Hey Liz
welcome and sorry you are having to join us with these issues right at Christmas

it might be a bit quiet over the holiday -- but do keep posting and I am sure somebody will be along to at least let you know you're not alone

on a more practical side -- your pump should have the ability to have multiple basal programs that can be programmed for different circumstances ( such as work , weekends , shift work , strenuous exercise etc etc )
perhaps if you have a look at the suggested books , and have a chat with your DSN -- you might be able to get a few basal programs set up to match your changing requirements ( if there is any kind of a pattern to them )
 
Yes it does but there is no pattern. I am just going to accept that it is what it is. Otherwise it stress me out which doesn't help.
I can do and eat exactly the same for days as a test and sugars are so varied.
 
Hi Liz

my bg control also changes every month. I have days when my bg starts to drop for a few days and then by altering the basal I get back to normal again and am ok for a few days and then Start getting higher bg so have to re alter the basal to cope ok again. I never know what time frame my bg starts to change as it can happen in the night, mid morning, afternoon or evening. I now try to not get worked up anymore and just "tweak" the basal and frequently bg test to monitor the results but eating low carb with lots low carb veg with small amounts of meat helps a lot.

Please don't compare yr control of bg levels with other people and feel down in the dumps. In real life, I've now met loads of type 1 all of different ages and their control of bg ranges from ultra good to poor but everyone is happy.
 
Hi Liz

I'm sorry you are having such a rough time and no wonder you feel depressed. I have brittle diabetes and have always had challenges keeping good control. With the pump I have finally managed it but it was really tough and I think my DSN made it worse in the early years.

Are you on antidepressants? Some of these cause BG fluctuations, often hypos, so the time of day you take them and keeping to the same time every day is very important. Any dosage alterations will need a change in basal too.

What sort of foods are you eating? Do you comfort eat due to depression or over treat your hypos? Is your life quite chaotic? All these things make it harder to get good control but it can be done.

Are you maybe trying to get good control all day rather than just looking at little sections? I had to start with overnight. If you wake up with a good BG reading it makes the rest of the day much easier. It was a right pain but I did hourly BG tests to check readings. Then every 2-3 hours. I made little adjustments until I got that right. Once that was sorted I worked on breakfast and then moved to lunch etc. Baby steps.

Also just another thought being female your periods will throw an extra challenge BG in too.
 
sorry to hear of your troubles. I can offer no help though as mine alters as well Though not so much as yours I put in a temp basal which seems to sort it. I used to change a lot on MDI also.
 
Thank-you all for your comments. I thought when I got the pump and tweaked the settings it would be ok and not fluctuate as much. I will keep tweaking the basal as and when I need to. Hopefully all will improve.
I don't comfort eat but it is annoying when I have to give extra insulin for even a cheeky biscuit.
 
Liz Leigh said:
Thank-you all for your comments. I thought when I got the pump and tweaked the settings it would be ok and not fluctuate as much. I will keep tweaking the basal as and when I need to. Hopefully all will improve.
I don't comfort eat but it is annoying when I have to give extra insulin for even a cheeky biscuit.
Click to expand...

But, you're type 1 diabetic. If you want to control you blood sugar, when you eat you need to bolus for it. Only those who are either honeymooning (still producing some of their own insulin) or in the meddle of some physical activity could get away with eating a cheeky biscuit with no bolus and no impact on their blood sugar. That not an indication anything is going wrong with you pump, that's just what type 1 is, unfortunately.

You might want to have a look at "sugar surfing" (it's mostly about how to manage diabetes via CGM) to get an idea that type 1 diabetes is not static - it's not about finding the numbers and coasting along with those numbers with no change. You're a living breathing person, you change, your stress levels, your activity, your health, I'm assuming your a menstuating woman so your hormone levels also change - all of these changes are going to have an impact on your basal requirements and what I:C works for you. If you can have a more flexible approach to your diabetes and just go with the flow, making changes to your pump settings as and when your changing body needs them you might be able to be more relaxed.

Are you confident changing pump settings youself? Pumping insulin is a great guide on this and well worth a read.
 
I didn't have to bolus for extra food with injections. But the advice I got from this forum has really helped. I am confident in changing setting on the pump so I will try and be a lot more relaxed.
I had a hysterectomy 26 years ago and am now aged 57.
I honestly don't think I have been given the best advice or information in the past. Hopefully new year new start
 
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