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Hi. Feeling kinda low and sorry for myself.

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AaronH83

AaronH83

Well-Known Member
Relationship to Diabetes
Type 1
Hi guys. Been a fair while since I have posted here, sorry for that. I've got Coronavirus, I've been laid up in bed for almost a week, been in hospital with DKA, and am going a bit stir crazy. I have been trying to fight my corner to get a pump these past few months and it feels like every way I turn there is another obstacle thrown at me. My depression has really kicked in a notch and I guess I'm just venting here because I have nowhere else to do so. Apologies for that.
 
Hey Aaron, this sounds annoying hope you can get back on track soon. Is there any reason why they won't give you an insulin pump?
 
Hi @AaronH83 Sorry to hear you’re ill and feeling down. I hope as you feel more better physically, you’ll feel a bit brighter in yourself.

I had to fight to get my pump many years ago. I was refused the first time, but appealed and got it the second time. This might not be something you want to be bothered with at the moment, but when you’re feeling better, I recommend being clear about which pump criteria you meet, and giving evidence of how a pump will help sort that problem. Why exactly have you been refused?
 
I've been waiting 5 years on being sent for DAFNE. I have taught myself to carb count and have been working out and adjusting my basal and bolus dosing since 3 months after I was diagnosed so it seems to be just a formality. I cover all the criteria for being given a pump, I work shifts, I test at least 4 times daily, I carb count, etc.
 
Five years?! @AaronH83 How come it’s taken so long? FWIW, I’ve never been on a DAFNE course and I have a pump. Perhaps your local guidelines are different but I only had to show I understood carb counting and could do it.

Would they accept you doing an online carb-counting course?
 
I went on the DAFNE course 12 years after my diagnosis. Like you I had taught myself to carb count and how to manage my doses with exercise and sickness. Like you, I was reluctant to do the course but it was a pre-requisite to the pump.
I decided to attend because it was a small price to pay to get the benefit of the pump.

Whilst I knew a lot of what was taught, I found the course really useful - I got a chance to spend time with a variety of other people with type 1. I don't usually mix with people with diabetes. It was great to talk to them. I learnt how they managed, I saw for myself the impact of not managing diabetes closely which had a much greater impact than reading about it and I learnt not to beat myself up too much when I have a tough day or two.

But I also realised another reason for attendance was my DSN to judge whether I would be willing and able to put in the effort to learn, configure and manage the pump. Pump definitely requires more effort than MDI to set up and understand.
 
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We’ve never been on a DAFNE course either, they don’t do them for children. I can see that they want to make sure that you are willing to put the effort in, but on the other hand when my daughter was diagnosed there was a trial just starting up comparing MDI with pumps in newly diagnosed children and the hospital were desperate to get us on the trial (we had to decide within 10 days of diagnosis). We went on the trial and got a pump, got set up and some basic “how to do a bolus” instructions with DSN and pump rep, had lunch (in hospital cafe reading carbs off the back of packets) then had half an hour with a dietician and were given a free copy of Carbs & Cals, that’s all we got for carb counting training! Next pump refill done also with DSN and rep and then we were basically left to get on with it, although we were in and out of hospital quite a lot anyway because so newly diagnosed and we just learnt as we went along. Nobody checked whether we were committed enough, although having said that they would probably take the pump away if they thought we weren’t using it properly. I do think it’s a shame though that some people who would really benefit from pumps have to fight so hard to get them.
 
Hope you feel better soon.
 
Hi @AaronH83,

Just wanted to pop in and say hi! I'm really sorry to hear that you're felling low, it's totally understandable as being unwell on top of managing diabetes can be challenging. Please don't apologise as you're more than welcome to vent here any time you need to.

It sounds as though you've been doing the right things so please do be gentle with yourself and focus on feeling better for the time being.

I know it's not easy to get appointments atm but it might be worth speaking with your GP about how you're feeling as they may be able to help.
 
Crikey, its totally understandable that you are feeling low. Lots has been happening for you or not! as in the pump.
 
I'm a recovering addict too, and I suffer from PTSD and depression as well as my diabetes and I've asthma too. I don't let it hold me back from doing things but with this damn virus I feel like I've been kicked right back to start all over again. I am so thankful for everyone here and their kind comments
 
Never apologise for venting here @AaronH83 We all get down and fed up sometimes, and you’ve had a lot to deal with.

I hope the Coronavirus is improving a little at least.
 
Sorry you’ve been having a tough time and that Covid has put you in hospital with DKA (I think DKA risk at relatively normal BG levels can really increase with T1 and covid unfortunately).

Hope you can get some additional support to help you with the extra challenges you face, and that your journey towards pump therapy gets smoother it that is the right thing for you.

It does involve extra work, and does come with more risk of DKA, so I guess your CCG may be cautious, but there is no specific requirement for DAFNE as far as I am aware (I am another pump user who has never formally done DAFNE).

Good luck, and vent away as much as you need!
 
Are your employers sympathetic?
 
Hi @AaronH83
I too had coronavirus and then was admitted for DKA following 10 days isolating. I was in hospital for 4 days, and then isolated for a further 10 days, so was off work for almost a month all told. I understand how low it can make you feel. I hope you're feeling much better now

Mel
 
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