Nhs care shocking

[Kevvb1]

Hi guys. I was diagnosed on December 28tg just gone. Apparently type one. I was diagnosed by a prick to my finger, put in my first hypo due to them overdosing me with insulin and then leaving me hours in a room with no food or insulin? Then the next day to be told that due to the xmas new year period everyone didn't give a ****! They then led me to the 'diabetes unit' some crackers old lady gave me novorapid and levimir said take this lev morning and night and nova when you eat carbs that's it... if you don't you will die!! Thanks a bunch lol....
6 months down the line I have no idea what I'm doing and was considering how many jelly babies would it take to do me over?

 

[paulliljeros]

Hi @Kevvb1 It sounds like you have been given a rough start, but can I recommend you don't try to "do yourself over" with jelly babies ... it takes far too long and all you'll get is complications which are seriously unpleasant ... trust me, I'm there, although my Achilles heel has always been midget gems.
If you have a think about what advice you want, you have got every piece of experience imaginable many times over here, and everyone has a vested interest in sharing their knowledge. As a start, you may want to consider purchasing "Think Like a Pancreas" as a reference book for diabetes, I have found it invaluable.

 

[azure]

I second the recommendation of Think Like A Pancreas. That's kind of what you're trying to do, and it's a fantastic book

How's your diabetes control? Is there anything in particular that you're finding hard? What insulins do you take? Do you carb count?

 

[Juicyj]

Hi @Kevvb1 - welcome to the forum, sorry to hear about your experience, that sounds terrible..

My best advice is to put what's happened behind you, start becoming an expert and learning more about managing your condition, these were circumstances that were beyond your control so don't let them affect how you cope with this, your life comes first so by being an expert you will know more than anyone else on how to best manage your condition. Remember there is alot to take in and you are dealing with the emotions of being diagnosed too which is pretty much like the grieving process, however you survived and are here to tell the tale so taking good care of yourself should be your no. 1 priority - we can all help support you too, just ask if there's anything that you don't understand, many years of experience at hand here

 

[Kevvb1]

Guys thanks for the support, my doctors are an absolute joke. They refuse me the DAFNE something about because I haven't had my honeymoon yet!! Are you delusional it's an information coarse about my insulin and food ?????? I'm on month seven of hell and still no dietitian I thought it was kind of important as everything I eat makes me feel like rubbish then I'm just stabbing myself with a dose I hope to be correct!! Had 2.0 ketones tried to call the nurse line multiple days to be welcomed by a voicemail and still have had no reply, I was 15stone this time last year I'm now under 10 my anger has hit an all time high and I literally want to fight everyone. I have no tolerance for anything. I am struggling to work due to it I just can't go on like this!! The docs only response is stop taking it and you'll be in hospital! I've gone 2-3 weeks and not took it and hammered all kinds of food my meter just says hi and I plod along with every muscle in my body burning as I have no energy... I'm just lost god knows... what will be will be ayyy... 26 years just my time I suppose

 

[Gemma2]

I am concerned about your lack of help. What part of the country are you living in?

 

[azure]

@Kevvb1 You should have been taught basic carb counting. If you haven't, there are online courses.

Please do,take your insulin. I know it must be very frustrating for you, but you'll end up really ill if you don't have the insulin your body needs

 

[catapillar]

Sorry to hear you are struggling.

It's pretty standard not to put someone on a DAFNE course so soon after diagnosis. That's because the honeymoon can throw a spanner in the works when it comes to working out an insulin to carb ratio and part of what DAFNE doe is to teach you how to fit your diabetes into your life. Unto you've lived with it for a bit it difficult to do that. Is usual not to put someone who is less than 12 months diagnosed on DAFNE.

In the meantime, you can access a free NHS course on carb counting - https://www.bertieonline.org.uk

What you eat really doesn't matter, so long as you are bolusing for it. So you don't need a dietician. You just need to understand how to use your insulin. That develops with practice.

You are feeling tired and angry and loosing weight because your blood sugar is high because you aren't taking your insulin.

 

[Resurgam]

If you are not taking your insulin then your blood glucose levels will be high and you will not be able to think clearly - I have lost the ability to write fantasy since I brought my numbers down - and I expect that the anger is somehow associated.
Type ones need insulin in order to survive - and to have energy - and yes you really can't go on like this.

Start to eat proper foods and test your BG levels - use a new stabber every time so you don't damage your fingers, and if your levels remain high then talk to someone - if you can't contact anyone at your surgery then dial 111 or if it is really bad, 999 - because you might think it is bad now - but there could be worse to come if you don't sort yourself out.

Doctors and dieticians are not the only source of information - look on line, ask questions here - you can do this...

 

[Kevvb1]

I'm in northampton, the whole dafne thing is a joke. I am not an uneducated person so when someone tells me you may have a honeymoon period but this is not saying you are cured.... taking an information course on how to manage you're T1 surely cannot hurt even tho I am asking for it. I have felt ill now for nearly 2 years I just don't know how much more I can take, they started on levimir but then changed to tresiba at 30 units but smashing that much in stung and left massive raised sore patches on any injection site. Novarapid isn't so bad but god knows what im doing with it... 1 unit per 10g carb?

 

[Kevvb1]

People then telling me about fats and all kinds.... I've literally lived my life of this tastes ok I'll buy that from now on lol.... it's like the whole diabetes has melted my brain and I cannot seem to think straight it's FU

 

[Kevvb1]

Oh I bought that book tho

 

[Kevvb1]

Last time Mum called 999 I ended up being sectioned as they thought I tried to kill my self with insulin... then was in a mental institution pleading my life to a board of 5 psychiatric doctors which took the insulin away from me and told me I cannot have it and then I was so hungry I had to literally fight staff for insulin for a bloody sandwich......... literally my pancreas is so dead the smallest thing I eat I'm in the high 20,s and I can't keep it down

 

[Bon83]

Oh I bought that book tho

It's a good book - not just a guide to treatment there is loads of personal stuff from the guy. He talks about how he felt at diagnosis and made me feel better.

 

[noblehead]

I'm in northampton, the whole dafne thing is a joke. I am not an uneducated person so when someone tells me you may have a honeymoon period but this is not saying you are cured.... taking an information course on how to manage you're T1 surely cannot hurt even tho I am asking for it.

You should be eligible to go on the course now, things may have changed but when I did the course you had to have been diagnosed for 6 months.

Maybe by-pass the nurse and ask your Consultant to put your name forward, my understanding is not everyone experiences the Honeymoon Period (or the changes in insulin usage isn't as noticeable).

TBH by the time you've read the book and done the Bertie On-line course you'll be on your way to good bg control. Good luck.

 

[Kevvb1]

Oh does anyone have issues with when they go to sleep? My levels going to bed where normal then is either have my levimir or tresiba and I would wake up soaking wet needing a shower and again very high levels? Stopped the background stuff and don't wake sweating at all only happens when taking insulin?

 

[Kevvb1]

I wish I could afford the freestyle libre

 

[donnellysdogs]

I have private messaged you. I dont live too far away... please contact me...

 

[goosey39]

Hello and Welcome,
I am also in Northampton was diagnosed end of March, although T2, My DESMOND course should of been 13th and 27th July i have today just rang and cancelled it as my results are now below diabetic range but i was told this is sorted out in Kettering and the DAPHNE course.
Would you like the phone number ? as the letter i had with appointment on is from Kettering.
Although if you dont answer tonight i am away till friday so wont see message

 

[Bon83]

I wish I could afford the freestyle libre

Hi kevvb1 you can look at progress without one. Do You have a blood testing machine? You can do a finger prick before meal then two hours after and then another two hours. I do tests before exercise and after and sometimes even in the night. I have been lucky enough to be able to afford a freestyle libre starter pack and I used the two sensors to build a picture of exercise and sleep patterns. I haven't used them consistently. You can do it with a machine and to be honest they are most accurate - libre is good to have but not the be all - I know that's easy for me to say coz I've tried one. But I rely a lot more on my machine. Take one day at a time and you will learn patterns