Scared!!

[novowolf]

Hey guys long time no see from me haha
So here's the low down.. basically I've been on a pump for just over 2 years and while it has kept me out of hospital I have by no means been looking after myself properly.. mainly just ****ing about not doing carb counting properly.. not checking bloods all the usual stuff( I'm well aware this is completely my fault)
I'm 23 now and want to start getting my life on track a bit.. I have a hospital appointment in 2 weeks and I'm genuinely terrified of what will happen. I've recently moved to a new catchment area so this is my first time at this hospital I need to go coz I need help to sort my life out but I'm scared they'll be judgemental AF and take me off my pump (which if they do I reckon I'll land up back in hospital with DKA)
Any advice or words of wisdom for me?
Also if anyone happens to be in the Ayrshire and Arran area of Scotland have you heard anything about the freestyle libre?
Thanks guys
Novowolf out!

Edited by a Mod.

 

[Fairygodmother]

Hi @novowolf, you’ve taken the first step, you’ve admitted that you’ve not been carb counting or checking your bloods. It’s so easy to want to live without having to test and calculate all the time! Have you felt well? Have you had enough energy to enjoy life?

I don’t use a pump and never have. There’ll be others who’ll be able to give you much more detailed ideas of how to get back on track with it.

But. Back to basics?

Do you have a meter and strips or cassettes for it? Do you have the carbs and Cals book or app? The second step you might want to take is to test when you wake up, before meals, two hours after meals, before bed and if you wake in the night. Note it all down and see what profile you have. I admit it’s a non-pump approach but it’s a start

Did you have a carbs to insulin ratio before you let it all go? It might be good to dust all the old knowledge off, shine it up and apply it again while you keep records of the results.

You’ll have something to take to the appointment.

I don’t know what the policy is where you live regarding the Libre but if you can afford a reader and a sensor, which’d cost you approximately £70 (check that) then it’d give you a good idea of trends in your blood sugars, graphs covering continuous bs over twenty-four hours.

These days most medics appreciate honesty and want to help, especially if you show that you’re trying to sort things out. Good luck!

 

[EllieM]

Just remember that the clinic is supposed to be there to help, not judge. Almost all of us (well, me anyway!) have been in your position at one time or another). Can't help about the pump, because I've never been on one, but just remember that it's never too late to improve your diabetic control and the clinic is there to help you do it. Good luck.

 

[novowolf]

As a general rule I've been fine.. able to cope relatively well with life ( I have depression and anxiety as well)
When I have tried to back on track recently my usual carb ratio 1:12 works good.
I already have a reader so it's just a sensor I would need.. I had a trail run with it in my last catchment area and I was told I could keep the reader for if I got the sensors and it changed my life for the 2 weeks I had it lol
Hence why I want it so bad

 

[SockFiddler]

Hey, welcome back!

I'm a little divided on how to reply (being someone who also fell off the good management wagon, though I'm T2 and it was only for 6 months or so), so I'll do a sort of good friend, bad friend thing?

Bad friend: Sometimes you have to pay the piper! You (for whatever reason) didn't manage your condition responsibily and that should earn you a slap on the wrist. If they're a little judgmental, you sort of earned it, but it also gives you the chance to set a new baseline and start over, with whatever stern words you get ringing in your ears.

Good friend: You know what? We're all human, we're all flawed, and managing diabetes is intense and not that much fun and certainly doesn't make you feel cool and awesome when you're in the prime of youth. So don't worry about it. The important thing is that you're trying to make changes now - and good for you!

Explain to them what you explained to us: you struggled with the daily grind of it and burned out. But you appreciate the seriousness of it and are willing to start carb-counting and testing and doing all the right things. You need the pump, it's not going to be constructive to either your health or your mental state to get it removed. If they suggest you shouldn't have it, ask if you could keep it until your next review - if improvements can be seen in your health and management, then it'll be clear a pump is the appropriate thing for you to still be using.

Also, there is a thread about Freestyle Libre in the Lothian area somewhere (not quite where you are, but sets precedent for Scotland) - I'll find the link and drop it in here in an edit shortly.

Honestly, don't beat yourself up about coming off the rails for a bit. The important thing isn't that you did badly for a while - the important bit is that you've set your goals on managing yourself better. More power to you.

Edit: Libre on NHS in Scotland: Scroll down a bit to ScottC's post:

https://www.diabetes.co.uk/forum/threads/libre-on-nhs.126334/page-7

Hope that helps!

Sock xx

 

[DCUKMod]

As a general rule I've been fine.. able to cope relatively well with life ( I have depression and anxiety as well)
When I have tried to back on track recently my usual carb ratio 1:12 works good.
I already have a reader so it's just a sensor I would need.. I had a trail run with it in my last catchment area and I was told I could keep the reader for if I got the sensors and it changed my life for the 2 weeks I had it lol
Hence why I want it so bad

Novowolf, if you found the Libre helped last time you had it, you could ask if you could have a further trial to help you get back on the horse?
I'd agree your Team are there to help you move forward, not to label you, or whatever.

My brother is looked after at Ayr (and he rates it), but he is a T2. I don't live in Scotland any more so I have no experience of diabetes care up there.

Really good luck with it all, and a big well done for taking the decision to make a change. Change is tough, but going public on the decision to change is tougher, in my view.

 

[Fairygodmother]

Novowolf, if your DSN has a store or Libre sensors you might be lucky. I hope you are. I’ve just had an email from Abbot telling me that due to unprecedented demand they’re looking at three weeks to fulfil an order and mine is currently ‘on hold’. Grrrrrrr

 

[becca59]

Novowolf, if your DSN has a store or Libre sensors you might be lucky. I hope you are. I’ve just had an email from Abbot telling me that due to unprecedented demand they’re looking at three weeks to fulfil an order and mine is currently ‘on hold’. Grrrrrrr

Go to your local chemist. They can get them in and have them on the shelf.

 

[tim2000s]

Hi @novowolf - in your hospital appointment, say what you've said here. It's going to be hard to do. You will have to open up emotionally to someone you hardly know. But be as brutally honest about what you're going through as you can.

For all our concerns about the team at the clinic "judging", they are there to help. The tricky thing we all have is that we have tobe open to asking for that help, and show why we need it and what's causing us to appear in this 15 minute quantised version of us in the way that we do.

If you can make that first step, I think you may be surprised at what you'll find. I know a lot more HCPs now than I did when I first joined the forum (a long time ago) and in spite of how they sometimes come across, they care. Showing that you do too, and asking them to help will make it much easier for them.

 

[Fairygodmother]

Go to your local chemist. They can get them in and have them on the shelf.

Tried this. They’re only ordering if prescribed by a doc. I think different regions have different guidelines. Which chemist do you get yours from?

 

[Zilsniggy]

Hey guys long time no see from me haha
So here's the low down.. basically I've been on a pump for just over 2 years and while it has kept me out of hospital I have by no means been looking after myself properly.. mainly just ****ing about not doing carb counting properly.. not checking bloods all the usual stuff( I'm well aware this is completely my fault)
I'm 23 now and want to start getting my life on track a bit.. I have a hospital appointment in 2 weeks and I'm genuinely terrified of what will happen. I've recently moved to a new catchment area so this is my first time at this hospital I need to go coz I need help to sort my life out but I'm scared they'll be judgemental AF and take me off my pump (which if they do I reckon I'll land up back in hospital with DKA)
Any advice or words of wisdom for me?
Also if anyone happens to be in the Ayrshire and Arran area of Scotland have you heard anything about the freestyle libre?
Thanks guys
Novowolf out!

Edited by a Mod.

If you are type 1 in Ayrshire and Arran you will be entitled to a Freestyle Libre on prescription. It’s only us T2s they couldn’t give a toss about.

 

[Zilsniggy]

If you are type 1 in Ayrshire and Arran you will be entitled to a Freestyle Libre on prescription. It’s only us T2s they couldn’t give a toss about.

Also, if you are a hospital clinic patient you should be assigned a Diabetes Specialist Nurse. These are mostly based at Crosshouse Hospital, as are Diabetes Services. Unfortunately since Covid, their services have been much reduced, and they’ve only just gone back to actually seeing patients face-to-face. So there is a bit of a backlog. They don’t seem to be doing bloods or checking urine or feet at clinic now, so it’s a random thing whether you get access from your GP. You should be having yearly eye checks, feet checks, six monthly HBA1cs, etc done as per NICE guidelines but this has all gone by the wayside since Covid.
You need to speak to the Diabetes Nurse Specialist(DNS), not just your GP, because in Ayrshire GPs perception of diabetes treatment is quite varied. Usually the nurses you’ll see at GP clinics are NOT specialists, and some, not all, can be WAY behind the times. I hope you get this sorted out, because you do need to keep on top of your diabetes as much as possible, so that you don’t end up with complications. They’re not there to judge you, and one way to stop them doing so, is to be as knowledgeable as you can when you go to appointments. That way you can stand up for yourself a lot better. Good luck.

 

[Zilsniggy]

Just realised your post was 2018! Hope you got sorted out and are doing well now.