• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Why is this so hard...

A

aprilsnail

Member
Messages
10
Type of diabetes
Don't have diabetes
Evening all,

Writing as a daughter of a newly diagnosed T1.

My mum has had a really hard day today, she hasn't eaten a lot and has been feeling very un-well.
I think we thought we had gotten the hang of most of it but today really hit home that this is something she is going to have for the rest of her life.

I know it can be manged but its not about that, it's about waking up and not having to think about anything, not wrroying about hypos when out in public, not wanting people to worry about you, being embarrassed because you have needles in your possessions...

It's been a really long and awful day today and we've had a cry Because it really has hit hard that this is something un changeable, terminal and horrible.

I do hope I don't offend anyone as that is definitely not what I'm here to do.
I just think I need to have a bit of a rant!

I hate diabetes, it's turned my mum's life upside down and created excess stress daily.

I don't know how you guys came to terms and how long it took but it would be great to know it gets easier, because right now I feel like it's the end of the world.
 
aprilsnail said:
... right now I feel like it's the end of the world.
Click to expand...

That is a natural reaction. Same as me when I was diagnosed, and similar to the reaction of some of my loved ones when they heard the news. Even though I have T2 diabetes, which in some ways is easier to cope with.

You are right that parts of it are un-changeable (the disease itself, which is chronic i.e. lifelong once you have it). But nowadays it is not often "terminal" and you can work hard to reduce the "horrible" part.

It is great that you are working together as a family.

You are in the right place and others will come along soon to offer support, especially Type 1 members who have specific knowledge in that area.
 
It is hard not just for your mum but all her family and friends too. I got diabetes when i was 3 years old and i grew up with it and like most people on here we all hate it, one of the main problems is that people cannot see that you have diabetes. Some days you wake up and say i have not got diabetes, then the next day you hate it and some days you have a really good day. The thing is that when you first get it you have a information overload and it can be to much to take in, so you break it down in to a bit at a time. Even now diabetics who have had it over 30 years go through a rough patch, the thing is you have to do your best to look after your diabetes as the complecations that come with it are not nice, After a while you will all get used to what you are doing what makes your blood go high/low. Tell your mum that diabetes is nothing to be ashamed about and tell people that you are a diabetic as you may need help if you have a hypo. There is a lot of information about diabetes that you can read and tell others about it, your mam did not choose to be a diabetic but we are. If your mum has you and other support it makes a difference but you need to feel that you have excepted it and talking on here to people who are going through the same is a help. Remember diabetes is a marathon and not a sprint. You as well need to talk and think that you and your mum can and will get through it and do not be afraid to ask questions when you and your mum are at clinic, maybe write them down so you can ask. Good luck to you both and remember there is always this forum if you need a rant and most of us do at some point.
 
Hi @aprilsnail, i'm sorry you and mum have had such a bad day x However it seems to you right now diabetes isn't really terminal, I was diagnosed 40 years ago and there are many others on here who have had diabetes much longer. There are lots of different ways to manage diabetes; I think that the key is to manage it and not let it manage you. It will get easier, and become less of a worry. My advice would be to stay on the forum and keep asking questions, you will be fine xx
 
aprilsnail said:
it gets easier, because right now I feel like it's the end of the world.
Click to expand...

It does get easier and it's not the end of the world. It's important to hang on to all the positives and throw away the negatives.

Is there a reason for your mum not eating? It doesn't help when you're also juggling with insulin. Is she carb counting, has she been offered any courses, there's several positive things to be looking at, you have to be proactive rather than wait for something to happen.

Theresa May was diagnosed type 1 in about 2012, so maybe a role model . . . . excluding any politics. She might have lackeys running round after her now she's PM, but maybe not when she was Home Secretary.

One little suggestion I have is to see if your Health Care area is going to prescribe the FreeStyle Libre, it makes a huge difference to one's life and would certainly help lessen the worry of hypos (BTW more likely if mum's not eating properly). It's about £50 for the meter although there is an app for your mobile and the sensors are £50 each, each lasting 2 weeks. I can't get them on prescription but I think type 1s will have more luck if their HC area is prescribing them, it seems to be a lottery like most things.

Keep a stout heart, think positive.
 
Well done, to you all.
Hang on to this forum and seek out like minded members. You are definitely not alone.
Thank you for being a good daughter. Speaking for your mum, I'm sure.
 

Most CCGs are yet to make a decision on the libre. Those that have, have all decided it won't be funded.

Eg:
In summary, nowhere is funding it, for anyone. If you want realtime glucose monitoring you need to make an IFR, an individual funding request will only be successful if you have no hypo awareness and have frequent severe hypos requiring hospitalisation, if that's the case then you won't benefit from a libre because it doesn't alarm, what you need is a CGM.

It was hoped that there might be a potential for prescription after April, new financial year. But most of those statements say they will be reviewed in 18 months. So unlikely there will be any change in the short term.
 
Don't lose hope just yet, what often happens with new and expensive drugs is that the manufacturer drops the price or offers a patient access scheme.
The same may happen here especially if no.CCG agrees to fund it. It's great having these fantastic new products but not so great if they are prohibitively expensive and no one.wamts to buy them. Keep an eye out.
 
Hi there aprilsnail, so sorry your mum's had a bad day and I hope today's better. We all seem to get cross or upset when we feel unwell and can't get our blood sugars to do what we want them to, added to which blood sugars that are out of range make us feel worse anyway. It's just one of those things, but we keep going because we know that those days don't last. Think of them like a bad day at work or finding that when you get up in the morning the cat's thrown up on the landing and peed on the clean laundry.
The needles, the stuff to fix hypos, the testing kit, insulin in the fridge - they're just the stuff of life. Ask anyone with type one what they like about living and I bet the answer will be things that have nothing to do with diabetes at all. As for the extra supplies to carry around, well that's a good excuse for a mother-daughter handbag shopping spree: go out and enjoy it! Tell her not to worry about carrying her injection kit, people will understand if she explains, and you could give her a frio for Christmas, it's a pouch that she can use to keep insulin cool in warmer weather, a symbol of warmer, sunnier days to come.
On the more serious side, it's really about getting through the initial adjustment phase, getting to know how your own body reacts to things, learning and how to manage your own diabetes - hope your mum has a good medical team she can ask. It's about forming new habits.
AND above all, it's not a terminal illness. It's 48 years since my own diagnosis. I was 20, I'd been feeling more and more ill, so I was absolutely overjoyed that there was something that could make me feel well again. Without inviting hubris I think that I'm healthier than quite a few of my contemporaries, I've travelled, learned to scuba dive, tried skiing (I was useless), walked in glorious places, held down a long term job or two, had children, grandchildren, been to gigs and festivals, looked after an ageing aunt . . .
Enough about me, I only put it there to show your mum that life can go on.
Give your mum a hug from me, tell her it'll be ok, that if she feels really bad again to test her blood sugars to see if anything needs adjusting. It's surprising how high or low sugars can change a mood.
She's very lucky to have a daughter like you.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…