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Do you ever have times when....

Ok so I called the diabetic clinic last night to leave a message for them to call me. The reason being is I went for a brief walk with my man as part of my losing weight routine (I'm around 11 1/2 stone right now) but it was pointless due to two severe hypos so I piled in the sugar to keep me alive but it meant I lost no weight and felt awful all evening. I told them I was desperate and could they please call me. I've left constant messages before and never had a call back and no response to my letter of 3 weeks ago.

The question is.... should I complain to health services? I think I should if I don't hear back from them this week. I think a week is fair after ringing constantly and writing and receiving nothing in the way of a response. Even the bog standard letter stated something like 'we are sorry we haven't managed to get back to you yet but we will endeavour to do so shortly' would be a wonderful start but no.... I'm just left to rot.... oh yes and another hypo happened last night and again insomnia. Sometimes it's hard to find the will to live!!! :evil:
 
Yes Rach
I would complain.I get so fed up seeing the **** treatment we get and the variations thereof. Health care is two sided - you are trying to do your bit, they need to do theirs.

Go see your Doc too and tell them you are having continued nocturnal hypos which is creating insomnia /illness and that you REALLY need the support of the 'experts'. Maybe GP can push for an appt quickly. Feeling tired wont help your mood and I too have had to try really hard this week (with unexplained slightly higher sugars despite same routine) not to just say **** it - pass the Cadburys Heroes tin please, and thats me only 4 months into this type 1 hell!!!

So, chin up, keep going things will even out Im sure

Hugs
x
 
lilibet said:
Yes Rach
I would complain.I get so fed up seeing the **** treatment we get and the variations thereof. Health care is two sided - you are trying to do your bit, they need to do theirs.

Go see your Doc too and tell them you are having continued nocturnal hypos which is creating insomnia /illness and that you REALLY need the support of the 'experts'. Maybe GP can push for an appt quickly. Feeling tired wont help your mood and I too have had to try really hard this week (with unexplained slightly higher sugars despite same routine) not to just say **** it - pass the Cadburys Heroes tin please, and thats me only 4 months into this type 1 hell!!!

So, chin up, keep going things will even out Im sure

Hugs
x
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Thanks I might just do that. I need to speak to somebody and I feel like crying I'm so depressed right now. I've tried everything in my power to get better and get my glucose levels on track but with no avail. My constant lack of sleep and repetitive hypos is affecting my mood and although I have tried to remain positive I can't at the moment because I just feel my diabetic team do not want to help me. The doctor may push me for an appointment though so it's worth trying. I was nearly in tears leaving a message last night and actually begged them to ring me today as I mentioned I was so desperate for their help. If they don't ring it's my opinion they don't care and so I feel I will first see the doctor or nurse and then progress to complaining if nothing is done. Enough is enough and I shouldn't have to feel depressed as hell in order to get a bit of help from the clinic!
 
Jem said:
Hiya Rach,

Sorry you've been down a bit lately, I think most people do have periods of good control and feeling strong which may or may not be followed by a bad case of the why-me's and can't-be-bothereds ... I know I do lovey ... keep your chin up and try to do your best for more time than you're NOT doing your best! Everyone has already given you excellent words so I'll just add some best wishes and an e-hug xxx

Chocoholic!! So glad to see you back hun, hope your toe dipping is a happy experience ...

xxx
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Thanks Jem, it's just my period of bad feeling has been for over a year now and I can't get control. Although I've masked it by trying to stay positive - I just can't get the results I need and I feel completely worn out. This forum is mainly what has kept me fighting on!
 
Trinkwasser said:
Rach79 said:
Anyway I'm leaving the Island soon
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That may not be such a bad thing, there's a poster on another forum who has had truly appalling treatment on the IOM: it's possible that with different treatment and better information you may be able to obtain better control

I've seen this recommended, an online version of DAFNE

http://213.105.192.75/bdec2/index.shtml
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I am shortly moving due to the lack of healthcare treatment here - that is the main reason but also because my boyfriend wants more choice of career and we both find it too quiet here. I just would prefer to not have to be in a dire state before I go and have some sort of care beforehand. I get tired of waiting and tired of trying to find a solution without the help from the clinic and it's really depressed me. I have left a message explaining such so hopefully they will take note. If they have a heart they'll take note .. if not I'm going to have to get tough... but I don't want to be that way really - I just want there to be a diabetic team that actually care about me :| I'm on my last legs here and I don't want to be not sleeping again tonight as it's already affected my job as I mentioned on the message machine. I'm making mistakes and am grumpy which isn't me if my diabetes is properly controlled. Every time I try and exercise I have a hypo even if it's a small amount and I have a sugary snack afterwards to keep my blood glucose levels up. I have asked twice for a change of insulin as I believe the type I'm on is too aggressive for my type of lifestyle. They have never bothered checking if I've been ok on it since they changed me to it which I recently found out is against NHS regulations as every six months I'm supposed to have some sort of check up so this is what I will be complaining about plus the fact they haven't been there emotionally for me for up to a year now.

Ok rant over... I'm sorry if I'm going on but sometimes I just get so worn out and today I'm completely worn out :(
 
You rant and rant and rant.

Treatment, or the lack of it, such as you have had is appalling. Don't let them blame you for whats been happening to you. If they can't support you then they are failing you.

Come back here and write what ever you want to.

wiflib
 
wiflib said:
You rant and rant and rant.

Treatment, or the lack of it, such as you have had is appalling. Don't let them blame you for whats been happening to you. If they can't support you then they are failing you.

Come back here and write what ever you want to.

wiflib
Click to expand...

Hi yes I suppose ranting alone doesn't help - I need to take action I guess :? I've just got to the stage where I can't think straight and yes I do feel as if I'm bothering the clinic because they never return my calls so I feel as if I'm pestering them but I am one of their patients. I could say everything they've done (including telling my best friend during her work placement about how I am a useless diabetic and the doctor saying I was too skinny and he fancied fat women (I kid you not))but I'd be here all day. I feel I've been so patient with them and trying alone here and to be honest the only thing that has taught me to not give up is this diabetic forum so I'm thankful for that - really I am. I've just spoken to my boyfriend over lunch and he's told me things will be better when I move but I might not move for two months yet and I'm suffering in the meantime.

Anyway - when I do it will be a happy new year and I'm telling myself things will improve because although I can't even smile today or fake a smile - I've got this community and I've got a chance somewhere else so hopefully there will be better care there for me in NI where I'm moving to.
Rach x
 
Hi Rach79

I have read some of your messages. If you are still trying to use low GI food as your carb intake, have you thought about just eating ordinary carb food at all and eating something like 1/2 slice of toast for breakfast, bolusing insulin and then seeing what your bg is mid morning? You might be surprised to find out that many diabetics dont really need to eat loads of carb for breakfast because it can a while for insulin to get going but eat some carb mid morning and balance themselves out that way by feeding their insulin some carb according to what their bg levels are.
 
iHs said:
Hi Rach79

I have read some of your messages. If you are still trying to use low GI food as your carb intake, have you thought about just eating ordinary carb food at all and eating something like 1/2 slice of toast for breakfast, bolusing insulin and then seeing what your bg is mid morning? You might be surprised to find out that many diabetics dont really need to eat loads of carb for breakfast because it can a while for insulin to get going but eat some carb mid morning and balance themselves out that way by feeding their insulin some carb according to what their bg levels are.
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Hi - no as I'm not sure what bolusing is... in fact admittedly I don't have a clue. I've just been researching diabetic care etc. and DAFNE as it's been mentioned a few times here on this forum including above. This DAFNE doesn't appear to be offered on the Isle of Man and as I won't get to speak to my diabetic clinic I guess I have to wait until I move before I can ask about it. I'm really interested in it though as it appears to have helped a lot of diabetics and it mentions about eating whatever I want etc. which I've never really been able to do without worrying about a hypo. I know hypos are something diabetics have to accept - but rolling round on the floor due to lack of hypo feelings and three to four hypos a day isn't acceptable and I feel this condition is now destroying me. I'm hanging on though... I just don't want to live where I am at the moment and nobody has called me or texted me today despite me begging them so I'm on my own with finding where to go and getting help. I've had worse happen in my life though so at the moment I'm not giving up. I don't want sympathy as such from anyone I just want a solution... a practical solution and I didn't think it would be so difficult to find where I live but it is.

Anyway I think if I don't get my insulin changed (which at the moment it doesn't look that way at all) then I will wait until I move and just pray it is better service and ask about the DAFNE programme then. You guys really do keep my spirits up... although I'm not smiling yet... just can't as I just want to sleep having only about 3 hours disrupted sleep last night :!: I just want my bed and to hibernate right now.
 
Well surprise surprise I never got a call back. So what is a stronger adjective than 'desperate'. I don't think there is any.

As usual I've felt terrible all day. I've reduced my night insulin last night and will do tonight. Also today I've just stuffed myself full of chocolates... after all what difference does it make - the answer is nothing!
 
Rach79 said:
Well surprise surprise I never got a call back. So what is a stronger adjective than 'desperate'. I don't think there is any.

As usual I've felt terrible all day. I've reduced my night insulin last night and will do tonight. Also today I've just stuffed myself full of chocolates... after all what difference does it make - the answer is nothing!
Click to expand...

This is to lessen my chances of hypos but my BG will be around 12 - 20 mmol but at least I can have sleep and eat what I want... the fact I'm trying to achieve a balance means nothing to the losers at the clinic. They are losers and I can't help but feel angry and hurt nobody called me today.

Speak to you all soon maybe I dunno... just wanna give up.

Bye x
 
Rach, please keep coming back here. No matter how bad you feel,I can guarantee you will feel better in the future. Just keep hanging on in there, at least you have the posters on here and your boyfriend to keep you sane. Even if you haven't got faith in yourself, rest assured I have.

Sending you big hugs,

Bubsy
 
(written before your last post)
Rachel, You seem to be having a horrible time.
I wrote a lot of suggestions but perhaps not appropriate at the moment, I'll post them later.
As for bolusing, thats when you dose for your meals. With novorapid you should be able to adjust your doseage for the amount that you eat.
Trinkwasser referred you to the BDEC course which is like a DAFNE on line. I really think it could help you a lot.
Try not to get too down, it really is possible to get better control and you certainly shouldn't have to suffer several hypos a day.
 
Hi guys - I've come back and still hanging on.

Thanks for the advice and it's your support and my boyfriend at the moment that is keeping me sane :) (there you even got a smile from me now).

I'm going to get an early night now and I'm just keeping my night insulin reduced a bit and running my sugars a bit higher until I can figure out a solution.

I printed off some information about the DAFNE programme earlier and I am really enthusiastic about it. It is another shining light in my tunnel at the moment!

Rach x
 
That's brilliant Rach, you sound a lot more positive. Keep your chin up, at least there's a light at the end of the tunnel. Nighty night,

Bubsy
 
Well my latest news is I fought to see the clinic and I got to see them this morning. They have inserted a monitor cathetor into me and attached a monitor to my clothes but it tests my sugars 288 times per 24 hours which is a heck of a lot but might be worth it.

I thought it would be really uncomfortable actually because it looks and feels probably like an insulin pump would feel but it's fine. It has made me consider whether I could have a pump as I thought it would be uncomfortable but it's not really. Anyhow I'll take one step at a time and see what results this monitor comes up with. I have my next appointment next week to discuss the results and also I'm going to be trained on carb counting as they believe that I can't manage my insulin doses very well. I agreed with them stating that I didn't know about carb count and would like to learn. So things are looking up.

I know I keep repeating it but this forum has made me realise I have a life and my diabetes is not just something I have to put up with alone. It is a manageable condition and sometimes you need professional support with it and I should aim to maintain that support. I can't sing enough praises for the people here for making me realise this and also giving me emotional support and great advice when I needed it the most! Thanks people :D
 
Fantastic Rach, I'm really pleased for you! Let us know how you get on next week :D

Bubsy
 
Great result Rachel. Onwards and upwards
See how much better you feel when you feel you've got some tools to work with, some light at the end of the tunnel and someone who listens.
Glad your clinic have taken bit more notice, i was getting ready to come to IOM and kick them up the ***** for you.

L
 
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