Trying so Hard & Fed Up!

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Rubyloo

Rubyloo

Active Member
Relationship to Diabetes
Type 1
Hi Everyone,

I have been trying so hard with my blood sugars & am trying desperatly to get by Hba1c down as it was over 8 (nearer 9) last time & I have a hospital appointment on the 27th which I am dreading! I always feel that my consultant thinks I'm not trying hard enough & I really am but are still getting things wrong. I'm either too high (teens & early 20's) or having constant Hypos! I dread going out on my own/ This morning I woke up on a 20, I went to bed on 7.6, the trouble is when I have Rice or Pasta I always go high in the night & when i wake up. My DN said not to up the night insulin (Levemir) but as I was 7.6 I didn't want to have anymore Novorapid as I may have gone too low! I had 12 units with my breakfast (usually have 6 units) & by 10.30 I was out shopping & down to 2.5.
I have asked my DN about Daphne but she didn't know anything about it & said I had to be refered by my consultant, Is this true? Maybe this would help. I am eating smaller & smaller meals, having hypos, eating things I don't want to get the blood sugars up & now putting on weight which I can't shift! My colesterol was also upto 5 from 4 so I need to try & get that down.
I feel like I wan't to scream.............I hate moaning cos there are much worse things to be suffering with but I am going around in a huge circle & getting knowhere! When I read how you are all so experienced & in control I feel so useless! Am I the only one who finds this so hard to deal with?
Thanks for listening
Debs
 
Hi Debs,

Goodness, this must be immensely frustrating! I think you'd definitely benefit from a DAFNE course, or something similar. I didn't do DAFNE, but was invited to a shorter course by my local clinic. I didn't have to be referred or anything, they just invited me along about 3 months after diagnosis. There was a guy on the course that had had Type 1 for 5 years and it was a real eye-opener for him. I think we all went away from it feeling much more 'in control' of our condition, with a greater sense of freedom about things like diet. I'm surprised your DSN didn't seem to know much about it.

If your BG is going so high in the night I'd question whether your basal insulin dose is correct. It might be worth doing some basal insulin testing as mentioned elsewhere - Type1 Sue gave me this useful link that describes how to do this: http://www.diatribe.us/issues/13/learning-curve.php

Might be worth keeping a food and exercise diary, and doing a lot of extra testing for a couple of weeks so you can go to your DSN armed with lots of info to discuss your options. Regarding your cholesterol - are you on statins? These can make quite a difference.

Don't despair! I hope things improve for you soon!🙂
 
Cholesterol limits - see http://www.nhs.uk/Conditions/Cholesterol/Pages/Introduction.aspx?url=Pages/what-is-it.aspx This NHS site states "The amount of cholesterol present in the blood can range from 3.6 to 7.8 mmol/litre. More than 6mmol/litre is considered high, and is a risk factor for arterial disease. Government advice recommends a target cholesterol level of less than 5." So, depending on what you mean by cholesterol... up from 4 to 5, it might not be a problem - do you mean it is now 5.0 or 5.x (where x = 1 or more).

Different areas / hospitals etc have different courses for different people - and they seem to like making initials into names - DAFNE, BERTIE, DESMOND etc. Whatever is available to you locally, I hope you find some support useful to you - or look online. I hope others will add more online resources. Just one suggestion - if your Diabetes Nurse isn't helping, can you try asking to meet a dietician?
 
I was referred to DAFNE by my consultant, but it was delivered by a DSN and dietician so I'm surprised your nurse didn't know about it. Have you checked the DAFNe website to see if your hospital is one that runs it? If so then pester your consultant to get on it, if it's not then ask then what structured education courses they run instead as every PCT is supposed to offer something.

I too would question the basal, but of course don't make any changes until discussed with your DSN. Maybe it would be worth asking if you can have a continuous glucose montior for a few days? It could be that you're experiencing the dawn phenomenon as it rose so much in the night, but then crashed back down after breakfast.

I always find when things go haywire for me the best thing to do, but normally the hardest thing also, is to take everything slowly, try to get the basal right first as that makes getting your bolus ratios right so much easier so do try some basal testing as northerner suggests, it may mean some 3am tests but it'll be worth it in the long run.
 
I'm type 2 and on pills. I get frustrated when things are not as well controlled as they should be. I want my GP to refer me to the hospital so that I can have specialist care. He is very over worked, but also reluctant to loose the money he gets for my diabetes care, so it is a difficult situation. I don't want to alienate him as I need a GP, but I do want better diabetes care, and more support.

At least we have these forums and others to talk to.
 
Hi Debs, sorry to hear about your ups and downs. I know how you feel, because it probably seems that whatever you are doing, it never works out! However, I agree that monitoring your basal rates is a good start. Also, I agree that any information regarding carbohydrate counting would be great. I am on a pump, and I must admit, it's made a great difference to my life, all for the better. However, just when I think I've cracked it, whoosh, low blood sugars! I'm monitoring my basal rates at the moment, and it looks as though they need adjusting, after breakfast, and after lunch. I try not to get too fed up, but it's difficult. When I saw my consultant and told him how down I felt about my control, mainly lows, he said that he felt I was doing very well, and it was because of my previous diabetic control, that a pump was recommended. My control is very much improved, but I also feel a little down when I have these set backs. However, when you can, by adjustments, get your targets, it's great. So, have a word with your Consultant, or Diabetic Liason Nurse, and I'm sure that it will sort itself out. Take care, I'll be thinking of you!!!🙂
 
Debs dont let it get to you! Im going through the same sort of thing right now. a couple of weeks i was ready to give up completely, i thought sod it, i dont care how high or low i run anymore (very silly of course but it does do that to you sometimes- after 15 years you feel youve just had enough!)

others on here can offer much better advice one your insulin requirements (as they already have done) than me, but it can be beaten! it doesn have to control you (even though it may not seem like it right now). Go have a SCREAM, go to the gym and let it out on a punch bag, you have to let it out some how trust me!

keep posting here, keep us updated. If you feel your consultant doesnt think your trying hard enough or something like that- explain to him in very clear terms that you are, and you are seeing him for his help, not critisim. try and speak to all the specialist nurses/ consultants at your clinic, dont settle for just the normal one you see, espcially if you think their not helping you that much- its your health so have it your way!

I hope you manage to get things sorted!
 
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