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Hello and help please!

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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Nicolecase

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Relationship to Diabetes
Type 1
Hello everyone, my name is Nicole and I have had Type 1 diabetes for 15 years now (since I was 9). I joined this forum because I was recently diagnosed with preliferative diabetic retinopathy. This is down to the fact that for the majority of the 15 years I've had this disease, I have not looked after myself. At all. The only times I've managed to were when I was pregnant with my two little boys. I managed to look after myself somewhat in the 2 years between the kids too. My youngest was born 14 months ago and I went straight back to not looking after myself again. I made a doctors appointment in February to see a specialist and get some support, but every time they send me an appointment I cancel. I'm absolutely terrified of seeing the specialist and telling her just how awful my diabetes is at the moment. I had some pretty bad experiences with a doctor when I was a teenager and I think that's why I'm so terrified now. I just feel so overwhelmed when I think about how much work I have to do to get myself healthy. I think a part of it is that if I ignore it, I get to pretend I'm normal. obviously I am now paying for that incredibly stupid decision. I was hoping some of you might have similar stories and be able to give me tips and advice and support. Anything anyone can throw my way would be very much appreciated. Thank you for reading,
Nicole
 
Hi Nicole, welcome to the forum 🙂 Very sorry to hear that you are struggling, but glad that you have taken the step to find some help and support. You are not alone in this, and many of our members have been where you are now. The first thing I would say is don't get overwhelmed - take things one step at a time, and gradually you will build up a routine that you hardly need to give a second thought to. Why not start by making sure you test when you get up, and before each meal?

What insulin are you on? Don't be afraid of seeing the doctor, they are there to help you, not to judge you. Perhaps you might feel better seeing a DSN first and just having a chat with them? They are usually very good at listening, and getting it all out in the open with them should help a lot. It's awful carrying the guilt that you feel for not looking after yourself, but it's never too late to turn things around and get things on track.

Please ask any questions you may have - no-one with diabetes 'knows it all', we all learn from each other all the time, so don't be afraid if you think you are asking something that seems obvious.
 
Hi Nicole, it's pretty relentless hard work managing type 1, but you can take small steps to help yourself towards better control 🙂. It doesn't need to be as tight as during pregnancy, but you do need to set yourself some goals to work towards.

First one should be to go along to your consultant appointment! Sorry to hear you had a bad experience when you were younger (and some of them are d1cks), but the appointment is all about you, so you should open the conversation by saying how you've not been managing and that part of the problem is the negative experience with your paediatric/adolescent consultant! That should put this doctor on notice to be supportive! You must also not delay any treatment you've been offered for the retinopathy - I know I sound like someone's Mum (which I am!), but putting it off will only make matters worse. You can stop this in its tracks 🙂

Have you got the book "Type 1 Diabetes in Children, Adolescents and Young Adults" by Ragnar Hanas? It's an excellent book, and perfect for starting afresh with your diabetes management. Don't be put off by the title, it's suitable for type 1's of any age, and is written in an optimistic can-do style that really helps. Good luck! 🙂
 
Welcome 🙂 It is NOT easy being T1. Keep at it. Have a look at some of the storeys on this site of people who have been T1 for 70 odd years.
 
Welcome to the forum Nicole 🙂
 
Blimey Nicole - I'm not shocked by your story at all - you understand what you have and haven't done, and you've been truthful - so why on earth dwell on it? The important thing right now - is to move forward - not look back!

Except I am going to say this to you. Pregnancy for a T1 diabetic is SERIOUSLY hard work - diabetes is NEVER that hard work otherwise. You more or less spent about 5 years or so keeping absolutely on the straight and narrow - with no leeway hardly at all for wandering off to the side on occasions. That's HARD - and I want to congratulate you for managing to do it! - at all - let alone twice. All T1 ladies who have successful pregs and healthy children deserve a HUGE cheer, in my book!! A huge personal achievement - well done!

I have a BRILL DSN - nobody in the clinic criticises - so when I admit I've made a pig's ear of it (cos it happens you know - we just don't talk about it much!) she asks Why - what did you do? so I tell her. And THEN she says with a laugh 'Well - that probably wasn't the best decision Jen, but you know that - now - so where are we now, how are you going on from here?' etcetera.

There might be all sorts of things available to help you along - but without knowing a bit more about your insulin regime, and whether you have been on an eg DAFNE - formal carb counting course to enable you to adjust your insulin meal by meal by snack by blow-out - it's a bit hard for us to know where to start!
 
Hi Nicole and welcome 🙂

Please don't beat yourself up over any decisions you have made in the past and start from now to take steps to look after yourself because you deserve it.

One important thing to bear in mind when dealing with proliferative retinopathy is to discuss how best to improve your control with your DSN, ophthalmologist etc as a rapid tightening of control can perversely cause proliferative retinopathy to become more aggressive and progress more rapidly. I know this from personal experience as I went through a difficult time with my diabetes and retinopathy. They will advise you on gradual improvements which will hopefully stop further damage.

Diabetes teams have heard it all before because we all struggle with all sorts of aspects of control at one time or another and they will be a lot happier to help you get better control sooner rather than further down the line. I used to cancel appointments and thought I'd sort myself out but we all need support and good medical advice to get back on track.

I'd take a deep breath and ask for an appointment with your team and explain where you find yourself and I'm sure they will do all they can to help you out.

Good luck getting started and please ask for any help on here because there is a wealth of experience from lovely people who 'get' diabetes.
 
Welcome to the forum - What more can be added to the fantastic replies above
 
Thank you every body your for your lovely messages and advice. I am struggling with the guilt, and I'm trying to be more honest with my family about just how terrible I've been. I will definitely look into that book, I need to relearn everything I think.
I'm currently taking novorapid before meals, and lantus every evening. When I was a teenager my nurse did a very brief run over of carbohydrate counting, and I did that when I was pregnant too, but I haven't been to any courses, and I take a base dose now with my meals. I do tweak them if I have more/less carbs than usual though.
As I'm typing this an advert for the repurcussions of not looking after your diabetes is on the telly! I'm taking that as a sign!
 
Oh, also, I have a blood test on Tuesday for my annual review the following week. I'll update everybody with my hba1c, which I'm dreading by the way!
 
Trouble is Nicole, when we've been diabetic for 'a while' the assumption generally by doctors and nurses is, that we already know stuff. And a lot of time - we ruddy well don't! which isn't our fault whatsoever.

I'd had it over 30 years before I was offered carb counting training - and it does take around a week (some are a whole week, some are one day a week for X weeks) but honestly, it changed my treatment of my diabetes very much for the better. And I learned so much more than just how many carbs are in a slice of bread, or whatever.

So - when they call you in to actually do the review (cos if your A1c isn't good, they will won't they! LOL) that's you opportunity to say you want more help please and you'd like to go on a course !

Be pro-active, and tell them before they ask that you'd fallen off the rails a bit - but that you now want to get back on them and will listen to any advice and join in doing stuff for yourself, when they ask you to.

You may however be able to self-refer to your local hospital diabetes clinic, to see a diabetes specialist nurse, if you say you are T1 and seem to have fallen off being invited to see one regularly LOL - the receptionist won't know whose 'fault' it is (and won't care) so you can save the full details for when you see someone who CAN help you, can't you!

Good luck! - ring tomorrow!
 
Really great advice from TW, Nicole. We all do things wrong at times, it's making sure we get on the right footing with those who can help, you need all the support you can get.

Keep coming on here, it helped me more than I can begin to say. Best of luck. Look forward to hearing more from you.
 
Hi guys, I had my blood test on Tuesday morning. I think the nurse must have hit a nerve because I got this pretty bad shooting pain in my arm when she first put the needle in. Since then i keep getting shooting pains in that arm, usually when I bend it right up or pick up something quite heavy (like my 3 year old!). Has anyone else had this before? Does it go away?
 
Hi Nicole, presume you mean she took a sample from a vein in the inner elbow area? I've had this before - some people are gentler than others at taking blood! It will be achy for a day or two (you might get a little bruise at the site too), but nothing to worry about. Take some paracetamol, and avoid lifting anything with that hand (tricky with a 3yo though!).
 
Redkite said:
Hi Nicole, presume you mean she took a sample from a vein in the inner elbow area? I've had this before - some people are gentler than others at taking blood! It will be achy for a day or two (you might get a little bruise at the site too), but nothing to worry about. Take some paracetamol, and avoid lifting anything with that hand (tricky with a 3yo though!).
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Thanks Redkite, I did google it (mistake!) and managed to panic myself with stories about permanent damage and endless pain! It seems to be a bit more sensitive too cement today so I'm trying to be careful. In all my thousands of blood tests this is the first time this has happened, it was a bit of a shock!
 
Nicolecase said:
Thanks Redkite, I did google it (mistake!) and managed to panic myself with stories about permanent damage and endless pain! It seems to be a bit more sensitive too cement today so I'm trying to be careful. In all my thousands of blood tests this is the first time this has happened, it was a bit of a shock!
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I have no idea why the word cement is in my message, I can only blame autocorrect!
 
Hba1c

Hi guys, I had my annual review last night and it was actually a lot more positive than I thought it was going to be. My hba1c was 93 (about 10.7), which isn't great but is much better than I thought it was going to be. It's also come down very slightly since my last test in February, so it's heading in the right direction. I've been referred for the DAFNE course too, and I have an appointment on August 10th with the diabetes specialist to talk about how i should go about lowering my sugar levels in a safe way that isn't going to cause any more damage, in terms of the preliferative diabetic retinopathy. I've booked myself in for another blood test in 3 months, in the hope that it will spur me on. So all in all I feel quite reassured and positive!
 
Nicolecase said:
Hi guys, I had my annual review last night and it was actually a lot more positive than I thought it was going to be. My hba1c was 93 (about 10.7), which isn't great but is much better than I thought it was going to be. It's also come down very slightly since my last test in February, so it's heading in the right direction. I've been referred for the DAFNE course too, and I have an appointment on August 10th with the diabetes specialist to talk about how i should go about lowering my sugar levels in a safe way that isn't going to cause any more damage, in terms of the preliferative diabetic retinopathy. I've booked myself in for another blood test in 3 months, in the hope that it will spur me on. So all in all I feel quite reassured and positive!
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That's great news Nicole, really well done on getting all this moving! 🙂 Everything sounding really positive, I'm so pleased for you! It sounds like your team really know what they are doing regarding not going too quickly with things, DAFNE should be a big help, and I hope that the next test shows good improvement, as I'm sure it will 🙂 Please keep us updated, and remember we are all rooting for you! 🙂
 
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