Fed up

[Emma_P23]

Now this is just a form of complaining but I feel completely fed up with my pump and diabetes in general.
I've had diabetes for 17 years. 7 of which have been on the pump.
I have never missed a hospital appointment in the entire time I've been diabetic up until December 2012 when I was admitted into hospital with dka. Since then the hospital haven't sent through another appointment and I feel quite alone.
I know that I should phone them but I have lost motivation. Am I the only one out there that feels fed up with it all??

Sorry just needed to rant.


Type 1 diabetic for 17 years.

 

[Chezzy89]

No your not alone I'm 25 been diabetic for 16 years on insulin injections I've been in hosp many times with dka & as a result of that I'm in constant pain! & after all these yrs you'd think I'd of accepted this condition I still haven't just been to see my doctor an I'm waiting on an appointment with a phsyc who specialises in people who aren't coping with diabetes! So I'm totally fed up & so ready to just give up I also have no motivation but I've made my first step by seeing my doctor! Here if you need to talk x


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[shedges]

Hi Emma,

I know how you feel. It will get better though. I've only done 7 years (3 on a pump) and feel like that on and off. Do you feel like this permanently since December? Or does it come and go? There are loads of people out here who care, even though we've not met you.

Do you have a nurse you can contact aside from the hospital? Sometimes that familiar voice is better at listening than a stranger at the hospital.

PM me if you want.

Sam.

 

[clucker34]

Hi Emma,
So get where your coming from, type 1 for 33 yrs on pump for 4 mths! I had a son two yrs ago and feel like once he was born ( a healthy but big 9lb 6oz) I've not really been looked after, only really managed to get a pump because so many things seemed to be going wrong all at same time, ie eyes lazered twice, loss of sensation in feet and serious tooth loss ( I'm now down to 12 of my own left )!
The only positive thing I can say is that reading everyone's thoughts on here has really helped, there are people who are much worse off than myself so it makes me have a good old look at what I can do to move forward and get out of this rut! Chin up and do try and contact your gp or nurse for a rant if nothing else. Take care x


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[MCMLXXIII]

Pinkie will cheer you up
Hi. I'm Pinkie Pie and I have Diabetes. It hurts me to pee and it causes me to be short with my friends. I can't sleep at night. The other day I stubbed my hoove and I took it out on the gator. And two weeks ago I ran out of vanilla ice cream and struck Gilda. Then I find I haven't seen Gilda since season one. Who the hell did I hit?!

 

[kelp84]

Hi Em!
I have had diabetes for 20 yrs and have been on injections- I go to my diabetes nurse only to get my Hb1ac I find their advice useless and they often don't seem to know what they are talking about!
When my levels run high for more than a couple of days I feel genuinely down and tired... I feel like I don't care about anything and it takes a lot to get me to do anything ...I find it all frustrating as the only way I can manage to keep my levels even close to good is to be rigid with my lifestyle ( eating the same kind of things every day at the same kind of time) it is so easy to let it take over and give in - and I do ... Often
But here's the thing- diabetes hasn't made me weak!! It's actually made me strong - I have ****** times like your having now but I manage to snap out of them - I dig my diary out for a few days and can normally see why im high( I am a naughty nibbler) as I bring my levels down I find the old me comes back.. And I'm more positive! It's a dangerous cycle but you need to find something for you that helps you break it - your important and yes diabetes is **** but you can break it! Not all at once but a little bit at a time! I used to focus on getting one level a day good - so say pre breakfast and then see how I got on from there.....
Try to find support in other places - this forum is amazing there is more knowledge on here than most clinics I have ever been to
Good luck! Just don't quit trying xxx

 

[shirleybird]

Hi emma
I've been t1 for 33 years and have never coped with it. I've tried to be good but never succeeded! I suffer from depression partly, i think, because of my unwillingness to accept being diabetic. I've always felt that what support has been offered never really helped because it's only you who can make the changes. That lack of motivation makes it almost impossible. However, on a positive note, things are changing for me because i've found aprofessional who gets it.. My surgery has a new nurse with a knowledge of diabetes and i'm seeing her every 2 weeks to discuss how I'm doing and it encourages me to keep testing and stop the chocolate fests! We also have a specialist diabetic nurse who we can see on a less regular basis. I believe that more surgeries are putting in this sort of help for diabetics so if you dont have access perhaps you could look for a surgery that does. I feel fed up with diabetes all the time but this nurse has at least shown me that if you find the right person they will help. I feel much better for knowing that i can easily access her support whenever i need it. Have a look for someone like this and you may start moving forward. Good luck and don't give up.

 

[Emma_P23]

Thank you so much for your replies. It makes me feel better just knowing I'm not alone in all this. I just feel immense guilt that I can't control my diabetes lately. I think it stems from my uncle passing away just over a year ago from complications due to his diabetes. It scared me but I still can't seem to sort it out. I think I have to find someone to talk this through with. I just have to get my motivation back!


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[jwhittle97]

Hi emma,

Im jade been diabetic for over 12 year since i was 4 so pretty much all i can remember and i absoulty hate it, nurses doctors really dont help me as they just say everything i already know! But i have no motivation to get everything on track as its so easy to drift into bad habits (nt doing injections) but so hard to get back on track xx


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[SugarPlums]

Had it for forty years, a right grind, but your not alone.

 

[rosscortb]

Good Evening,


I think the first thing you need to come to terms with is that you are never going to get right 100% of the time. Impossible. I have recently moved onto the pump since July last year and it's the best thing ever as far as I'm concerned. Rarely wake up to a level above 7. You have obviously been on the pump way long than me.i am 33, 13rs T1. I don't know if you have noticed the same as me but I've pretty much come to the conclusion that to have a good chance of controlling the diabetes, it is all about controlling the background levels. I've done loads of testing and missed meals and worked out using the meter what to set my insulin levels at and all of that takes time, can sometimes take weeks/months but once you have that I reckon you are a more than half way there to controlling your levels.

Obviously, you have to fairly disciplined eat well, usual meal times etc, using what your learned at dafne. Also, you are 17 so you are growing still so your levels will sometimes going to be a little erratic but if you can put your mind to doing the testing every so often, you will succeed.

Here to help. Chin Up
Ross

 

[Emma_P23]

Thank you for your advice. I'm 23 years old though not 17.


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[kkkk]

It is really hard and complete sympathies with it all. I am fairly bloody minded and my diabetes is not going to get the better of me I go to all my appointments and I have had a really large phase of frustration because some of the people I've seen I haven't been that impressed with, I don't massively call upon the hospital for that much help and on occasions have been really knocked back by them (they did offer me counselling at one point when I was really upset with their reaction to me when I asked for cgm!) However I know at the end of the day I am the main person responsible for getting through life with it - they are my support team, I can mostly control it (never say always - I do my best with the tools and skills I have at my disposal, but in no way does that mean that I am permanently between 4 and 8 though that is always my aim). However every now and again they do surprise you, and I had the best meeting I have had in years with the diabetes nurses last week showing them how much cgm had benefited me and they were keen and supportive…and everything I had hoped for!

I still have peaks and troughs with how motivated I feel about it, though even in a trough I still look after it - just maybe spend less time looking to see whether there is a pattern or writing my results in a book to see whether there is a pattern!!! but on cgm it is all there for me which is lovely! So in the words of Dory on Finding Nemo it is a 'Just keep going, just keep going' - it is and will be totally worth it and you are not alone in the way you feel.

 

[ann34+]

Now this is just a form of complaining but I feel completely fed up with my pump and diabetes in general.
I've had diabetes for 17 years. 7 of which have been on the pump.
I have never missed a hospital appointment in the entire time I've been diabetic up until December 2012 when I was admitted into hospital with dka. Since then the hospital haven't sent through another appointment and I feel quite alone.
I know that I should phone them but I have lost motivation. Am I the only one out there that feels fed up with it all??

Sorry just needed to rant.


Type 1 diabetic for 17 years.

You don't say whether you have worked out why you went into dka? Whatever else, that and bad hypos are best avoided. Could it be that you maybe need ketone testers? On the pump it is easy to get ketones, especially if you are fairly insulin sensitive and especially if you - as many women do - have very changeable insulin needs over a month. Sometimes needs can be double end of month compared with middle. Over 30 years ago a doctor gave me good advice - he said just keep trying for good control, to avoid complications, as it would be less than 10 years to a cure. He meant that it would not be much fun getting a cure and having to cope with complications the rest of my life. There was not a cure but i just kept on! You have a very good chance of actually seeing a cure or at least a closed loop pump system as you are so young. It is all a pain, but what is the alternative?! All the best

 

[ann34+]

PS just looking through Type one posts as new to this site - noticed you mentioned leg/foot pain. My own experience was this came with bouts of uneven control, even when HbA1c fine, and would sometimes go into pain, or numbness, or strange electric sensations running round my feet and ankles etc, etc, Not easy - at the time doctors did not seem to know much about this. It went months after getting more even control. but would come back if control was uneven again. At least i had some blood testing, though not as much as now. Friends who have had diabetes longer than i have, or had it but were in different areas of the uk, did not have blood tests, and so were more in the dark, things have improved so much now, there are more choices re insulin as well - I was sorry to hear about your late uncle, he would surely like, or would have liked - depending how you see things - you to look after your diabetes? - when he was young things would have been very different, and difficult, and information would not have been available as it is now, either.

 

[Emma_P23]

I have times like this where it gets on top of me. I used to just carry on and it never bothered me or controlled my life. Now I feel I dwell on it too much and I struggle to understand why. I went into DKA because of different infections which I am prone to in my throat and ear. I have a machine for ketone testing but my doctor barely prescribes my insulin and 100 test strips a month let alone ketone testing strips too so I buy those when I have the money.


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[ann34+]

I have times like this where it gets on top of me. I used to just carry on and it never bothered me or controlled my life. Now I feel I dwell on it too much and I struggle to understand why. I went into DKA because of different infections which I am prone to in my throat and ear. I have a machine for ketone testing but my doctor barely prescribes my insulin and 100 test strips a month let alone ketone testing strips too so I buy those when I have the money.

If you are on the pump you need far more strips than this - best to contact JDRF or Diabetes uk and have a chat - JDRF also have videos on you tube - one where two school teens talk about management, one is on injections, the other on a pump, they use testing strips as i do. If you have infections you also need more testing. And ketone test strips . Your hospital team will write an letter to your GP explaining about pump management and your particular needs and difficulties, and the need for more strips on your regular prescription. It is important to contact them as soon as possible, they are very busy and may just have overlooked contacting you.
Infections are a constant problem for me too, I am on antibiotics with a sinus infection now! - an ENT referral may possibly help you. (Years ago a diabetes consultant told me some Type ones are more susceptible to infections and it was not known why - more may be known now, not sure). Hope things work out.


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[Emma_P23]

My specialist sent a letter to my doctor but he refuses to prescribe any more. Frightened to change though as I don't want to be left with a worse situation elsewhere. Feel a little trapped. But my doctor is a bit of a nightmare. He's refused my insulin prescription in the past because I'd used too much apparently.


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[ann34+]

My specialist sent a letter to my doctor but he refuses to prescribe any more. Frightened to change though as I don't want to be left with a worse situation elsewhere. Feel a little trapped. But my doctor is a bit of a nightmare. He's refused my insulin prescription in the past because I'd used too much apparently.


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The diabetes organisations mentioned were very helpful when i had problems after a move. See the websites below best to phone their helplines to find out if there is anyone who can discuss and/or offer support. You may have to complain and mention the Dept Health letter below. it may be stressful, but discuss it again with your hospital team. I was given my usual prescription after the hospital's letter. The issue has not gone away as when i have seen that GP he brings the issue up yet again - at first i thought he was thinking of saving money , as that is what he kept on about, quite openly, but it made no sense then that his next comments that my "HbA1c was good....why did i need so many strips and why did i need the pump?". Had he had not understood the detailed letter my hospital consultant had sent at all? This ignorance is very alarming.
http://www.jdrf.org.uk/news/latest-news/testing-strips-in-the-spotlight
Test Strips - Dept Health warning for doctors - http://iddt.org/about/living-with-diabetes/driving/fight-for-your-test-strips