An old timer struggling

[Mbaker]

Thank you - what is DAFNE and who is 101? That is at least an option I am definitely going to consider!

DAFNE stands for Dose Adjustment For Normal Eating (http://www.dafne.uk.com/) - a specific course for Type 1 diabetics (DESMOND is the Type 2 equivalent). On the course you will learn how to carb count etc.

101 is the pre-emergency phone assistance line for help that is deemed just below emergency, e.g. a bad cut that is not an emergency, I think your situation suits this service.

 

[azure]

@Mbaker 101 is the police non-emergency number. Did you mean 111?

 

[noblehead]

Thanks, I saw that book mentioned earlier and already have placed an order on amazon. I'm looking forward to reading it!

The book often gets a mention on the forum, it's a great read and so informative. Good luck.

 

[Seacrow]

Wow, people really are different. I was put on twice daily injections at diagnosis, and it drove me absolutely crackers. Having to eat set amounts at set times was so stressful. Two weeks in I went to my DSN and demanded a basal-bolus regime, and took to it like a duck to water.

Also, four injections a day is not a lot. This time last year I was taking up to 50 injections a day (severe insulin resistance).

Having said all this, it's your body and your life, keep pushing for the treatment that you are comfortable with.

 

[stanfordsteve]

Sure, I was advise to literally use the size of my hand to determine portion sizes with protein, carbs etc. In the old days they used to teach using a plate, divided into sections, protein, carbs, vegetables (x2). The ideal portion size was a handful - so if you were eating say lentils, its a handful of lentils, if you eating almonds - its a handsize full of almonds.

It's funny how we all have or had so many different ways of measuring our portions. I was five when diagnosed 55 years ago. My parents and I measured everything in ounces and did a grams of carbs per ounce of foodstuff calculation for total carbs (how's that for mixed units of measurement?). I was put first on Lente, if anyone remembers that, soluble and isophane some years later, then Actrapid & Insulatard. Now on Lantus (twice per day) and Humalog. An icecream scoop of mashed potato was 10 grams and milk was/is 10 g/fluid ounce and were the only things I remember being a volume measurement at the time. I don't remember ever using my hand as a measure I have always used grams per portion weight in ounces as my unit of measurement and still do most of the time for familiar foods. Where once I set my carbs per meal according to the bolus insulin dose, typically 6 units/60 grams carbs, now I carb count, adjust the dose (and time 'til the meal) accordly and tweak for the pre meal BG. Plus, I snack like crazy when out for long walks in hilly Brighton.

 

[Mbaker]

@Mbaker 101 is the police non-emergency number. Did you mean 111?

Yes, this should be 111, apologies.

 

[Fearless36]

Okay so a little update. Managed to get my doctor to refer me to another hospital, and the first letter came through allocating me an appointment at the end of September. I phoned and asked for an earlier one and have been allocated one on 30 August now which is nearer. However, it was a nightmare to organize. I felt really annoyed with how my former hospital mistreated me and went to NHS England to get them to follow up. Suffice to say they gave me a case number and took down my details. It took them 4 days to come back to me, and when I explained what had happened they were surprised and shocked and said they would follow it up. However I've never heard back from them, and don't intend on chasing. Just really bad service and it scares me. If I had recently been newly diagnosed, I know that the support I received when I was, was incredibly helpful. It appears nowadays that this isn't given any longer and that must be a nightmare.

 

[donnellysdogs]

So glad to hear from you. @Fearless36 and that you got a new hospital and took your case to NHS England.

The wheels of complaint are slow.. I know that from horrendous cancer care at one hospital and lodging a complaint.
Sometimes. As you are suggesting its a case of then letting go and moving on. I wanted answers and assurances that no other woman would have such appalling care. I gave tgem deadlines and they failed on all the deadlines too, and that was the CEO (now paid off!).....
when I let go it let tge anguish subside too and allowed me to spend time and care on myself and hubby that had also been thru hell.

Diabetes ways of management have certainly changed each decade but it doesnt mean to say that one size fits all. You are individual and need to be treated as an individual. Thats what makes a good consultant or a bad one.

I had a consultant recently reflect to me about something he was told in training.... (20+ years ago??). That actually gave me angst because things have changed in that 20 years and his training quote was out of date...

However, I'm glad to hear you got a quicker appointment and now all you need to donreally is to list details and if necessary copy it and hand it to the consultant. (I do this all the time now!)... prompts and record for both of us...

Good luck on 30th...x

 

[Fearless36]

Thanks sadly I think I will need it. It is improvement - instead of waiting till September, they are doing it day before my birthday which is some progress, however considering that I was supposed to be seen with a few weeks of my appointment in May, its a little surprising. Fingers crossed.

 

[Fearless36]

I think actually with the insulin, I 'm going to write to the doctor before hand explaining what has happened so far and requesting formally to be switched to a mixed insulin.

 

[Tony337]

Hello Fearless36
I have only just found your post and as an old hack myself (43 years a type 1 and only 49 years old) I sympathise.
What was your old insulin that you want to go back to?
I am really really lucky to have a perfect gp practice as they make things happen.
Please don't think I'm trying to insult your intelligence but have you tried looking on the CQC website and moving to a better rated practice and is this an option where you live?
If I needed specialist help like you do I would be talking to my practices nurse who isn't a DSN but she has access to them!
She would and has sorted things for me and my sister who is also type 1 who has drastically changed her regime recently.
I would happily share what she did if you wanted just let me know.
The worry I have is the volume of insulin you are on is way way greater than hers and mine and this goes back to that thing about us all being different.

Either way I wish you all the very best

Tony

 

[Fearless36]

Thanks Tony. My gp practice is useless. I complained to NHS England and they told me they would take it up with the Practice Manager some 3 weeks ago, and despite daily chasing they say they haven't been able to reach him. I know I have written 3 times in writing (and they are supposed to deal with complaints in writing but never have). The hospital I am moving to (first appointment next week) is a good one that I went to for years when I was first diagnosed and so I'm hoping they will be more helpful. My practice nurses - seem to be on a constant rotation. It is never the same one, and rarely do they help me with anything. I need to get a new GP but am hoping to get hospital sorted first and then take that as my next project.

 

[Fearless36]

Okay so went to my diabetic appointment today at a different hospital and left feeling 100 times better. The doctor was great, she listened to me and my concerns, and checked blood and did various checks. There are a lot of issues for me - but finally it feels like someone is on my side. I was given a new blood testing machine, and a lot of leaflets to read through, plus they have booked me a follow up with both the diabetic nurse (who specializes in T1) and the doctor after 6 weeks. I felt a hundred times better. All questions I had were addressed, and she took the time to do checks on my feet etc. It made a world of difference and even sitting in the reception waiting area was different than my last place. St Mary's Hospital in Paddington has to be the worst I have ever been to - and I received no support from them at all. I was worried that this new place would be the same but its light years apart and by far a great hospital so far (Central Middlesex Diabetic clinic). I regret waiting so long to change - I should have done this ages ago.

 

[layladream]

Hi, I am sorry you're having such a terrible time. It is so frustrating when you get mixed messages and to go from good control to what you're experiencing now must be a complete nightmare. I can only suggest you go back to your doctor with someone beside you to give you support. I'm sorry that there's nothing else I can say but I'm a newly diagnosed T2 and only just starting to learn about it. But you've done the right thing coming on here. My DN pointed me to this site and I am so glad she did! Everyone is really helpful and supportive. Look after yourself as best you can.