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Managing Type 1 - Can anybody help?

JB1974

Member
Messages
9
Location
Kent
Type of diabetes
Type 1
Treatment type
Pump
Hi,

Just found this site and looking for some ideas and inspiration. My partner has had type 1 diabetes around 10 years now.

We've been together a relatively short period of time, and I can see that "life" has made managing her diabetes difficult to effectively manage.

I don't want to go into too much detail, but she's always worked outside for herself in a very manual intensive job, has a 15yr daughter and 4yo twins. And until relatively recently an ex-partner who shall we say didn't make life any easier.

The main issue seems to be having a job that impacts sugar levels so dramatically, and which can from one day to the next differ immensely depending on what work is coming in. The other major issue is with the chaos of very demanding twins, blood isn't always checked after meals or as regularly as it should. There will often be low of as low as under 3 a couple of times a day, to highs in the 20s. The doctors have given her a stark warning about if things don't change she won't get to see the children grow up. Which although very dramatic, I can see unless something changes it's a real possibility.

She's already using Omnipod but in the last year HbA1c levels have more than doubled to a "risky" level.

I know there needs to be a fundamental lifestyle change, but I think we need a couple of quick easy wins to help us get there. I'd really value some help / advice on anyone who has Type1 and manages young children / twins, has a hectic lifestyle, or on making those changes. And any apps that you've tried that can perhaps at least build habit forming changes around ensuring bloods are checked, or throws out data that we can look at together and tap into her competitive nature. I know if we "gamify" by trying to beat last week / last month in limiting lows/highs and a more smooth normal blood levels could work. Anything!

Thanks again, this really is a bit of a life-ring in terms of advice I'm looking for here!

J
 
Hi

I have children and a pretty hectic life, like most parents! Ideally, I'd like a CGM but I can't afford one at the moment. However, is this something your partner could afford? That would give her a better idea of what her blood sugar is doing day and night. That would give her a good picture as a starting point to make adjustments.

What I do to make my life easier, is have a couple of blood glucose meters - one upstairs, one downstairs - and leave them set out ready to test. Then I can test easily and quickly, even while holding a child. I completely understand why it's hard testing after meals - the time can fly by, with children calling and jobs to do. I sometimes set an alarm on my phone, if I'm very busy. I often don't get my post-meal test spot on two hours, but I always test 90mins to 2 and 1/2 hrs after. Although testing seems like an added chore, I find it actually frees up my mind as I know my BS is ok, and I'm functioning at an optimum level.

As for work, maybe if she thinks of BS control as another thing she can do to work at her full capacity? Again, when I was working, I found blood tests reassuring as I could then move on mentally.

if her work varies day to day, that will make it harder. All I can suggest is testing lots and adapting as necessary - that is, correcting if too high, eating if too low. So an active management through the day, according to BS results. As she has a pump, things like temporary basals should also help.

I don't use apps because, well, I'm too busy : D I simply don't have time to fuss around with them. I just look back through my results on my meter or go through them in my memory. I have a target range and give myself a mental award when I get an in target result. If your partner's children are old enough and interested enough, could she involve them at all? Just in a fun way and to incentivise herself.
 
This is going to sound really harsh, but has she ever accepted that she has diabetes? Her behaviour is that of sonwone who is still in denial of the fact and the reality is that unless she does change her view of it, there is little that can be done to make her change.

I've tagged @donnellysdogs as a member who had a very activity intense job and may be able to help with ideas.
 
Hi
@azure & @tim2000s

Thank you so much for replying. I can’t tell you how much of a asset this forum is. I’ve worked in online for years. In various businesses we’ve tried to run forums and they’ve never got any kind of traction or community. This is really a huge credit to everyone who runs is, and participates. Blown away.

@azure - I must confess I feel on a forum such as this it’s a little pathetic (from my perspective) to say life is hectic, there’s children. Everyone else has those pressures, so to not find it easy I guess is a tough call. The way you plan, and the amount of tests you do make it sound so “easy” - I know it’s not I really do, but we are nowhere near that.

She’s lucky enough to have an OmniPod, I know that’s a real privilege, but not a CGM. I’ve looked into it myself and have read mixed reviews. Many people saying they prefer to rely on their own instincts. I don’t know. I would need to look at costs (I know with OminPods you can buy relatively “cheaply” online (eBay) but then it’s the on-going costs of pods / testing strips), and I’d do anything to sell the car etc if I thought it was the answer, but I do suspect that technology can only be a tool / aid – you need to get everything else right first as you said about the apps.

@tim2000s - please don’t apologise, I think all feedback is important, and relevant. I think to an extent you are right. In the past she’s taken a decision that she wanted to focus on other things first and then sort the diabetes out. But there is always something to sort before you look after yourself. I must confess I feel I’m betraying a little on here talking like this. I guess that’s something I’m keen to hear from other partners / friends. How you go about trying to help someone when perhaps they’re in denial, don’t want help. When you feel maybe it’s not your business. Thanks for the link to @donnellysdogs - really appreciated!

JB
 
@JB1974 I understand the temptation to defer sorting diabetic stuff. Don't get the idea I'm perfect or find it a doddle - far from it. It's hard keeping good control when you have children because any routine, even for something simple like advance boluses, can go out the window.

Mentally, I tell myself that whatever I care about - my children more than anything - can only be sorted if I keep the diabetes tamed. So I make myself deal with that first in order to allow me to get on and turn my attention to the important things.

I think mental attitude is everything, and once someone lets things slip a bit it's hard to get back on top of things. I suggest your partner takes small steps eg more tests , and rewards herself for every bit of progress.
 

You're completely right, I see it in every walk of life where the temptation to defer is easier. I can completely understand how, once you've got to that place where you tell yourself that you need to deal with D first in order to turn your attention to everything else, that it starts to make sense. It's getting to that point that I think is hardest. Those initial steps.
 
Hi,

I pretty much say this all the time.

Maybe get her to sign up here & get her head round it all..? Her "enlightenment" may just turn out to be your peace of mind...
I don't have children. But then that has always been my choice & ultimately a right partner i eventually "settled" with & married..

I'm also,gonna tag in a T1 mom who is T1 herself for a perspective that I kind of, lol, respect.... @mahola
 
Last edited by a moderator:
Hello @JB1974 Welcome to the forum. I have to agree with @azure that if the diabetes is sorted then everything else falls in around that. I have a little one and can only cope mentally if my diabetes is well controlled. I am now on a pump which does make life easier but it still takes priority. Regular testing is essential for good control, so I test first thing, before meals and driving and whenever I need re- assurance that my BG levels are ok, so if I exercise or do the gardening or if I feel hypo. i appreciate she is busy but taking time and little bits of time, out regularly to test, is essential.

Does she catch up regularly with a nurse to review her pump results ? I email my nurse every couple of weeks to run through my pump settings and we meet every 3 months, pump reviews to me are vitally important to track and monitor progress. My NHS trust also has pump review clinics, can she access one ?

I also agree if she could join a forum it would help her to acknowledge the need to take better ownership of her management, I applaud you for helping but she does need to tune in herself, which would help her address her struggles better
 

I suggest that one quick easy win would be learning how to adjust her basal rate to adapt to higher activity. My guess is that she has never learned to use the full capacities of her pump, she has hypoed a few times, then 'maladapted' by running her blood sugars more or less constantly high because that way she can cope with the demands of work and family.

I used to do that before I got my pump, but when I got mine I read that most people don't use the pump's full capacities, so I resolved to educate myself about it.

My sister is a Type 1, also on a pump, a long time before me. She started running a small holding, so lots of physical work. I warned her she'd need to change her basal rate downwards but she didn't. What happened? Higher hb in spite of more physical activity. Really, running high bloods is almost an unconscious strategy for most of us. It's really easy to 'slide into'. You just grab enough to eat to keep you standing and decide to worry about hypers later.

The other thing I found with my sis was that even after ten years, she hadn't set up the wizard on her pump. We did it together in one corner at the last family gathering. That was a very quick win.

It is hard to interfere directly with her treatment. She may find it threatening or controlling. But you could start just by asking, 'Do you think you are using the full capacities of your pump to help you with changes in routine?' From there, you might get to reading the manual, buying books (Pumping Insulin, or Think Like a Pancreas, and Diabetic Athlete's Handbook, etc). You can't expect to sort things in days or weeks, but over 12 months or so, she could crack it.


Sent from my iPhone using DCUK Forum mobile app
 
You've already had some fantastic advice here but the one thing I've not yet seen mentioned is the Freestyle libre. Although still a little pricey...it's much more affordable than a CGM. I've found mine to be great in terms of reducing my Hba1c and so much less time consuming than messing about with fingers pricks. Also in terms of tapping into her competitive nature...she may find it spurs her on when she can see herself in range for longer periods throughout the day.
 
Thanks all of your some great advice on here, and plenty to get started with. This week, after the chaos of half-term last week, is the week to start putting some of your advice into practice. Undoubtedly will be back with more questions, but also to thank everyone as and when we have this better under control!
 
I'd agree with Natalie1974 on the Libre.

It takes seconds to test & will give you an idea of what's happening through the night.
 
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