Help :( Just don't know what to do anymore.

[TheSparkyPony]

This is going to be a long thread, I warn you now, need to get it all off my chest!
I've explained most of it as much as I can! If you need something clearing up let me know.

I've been a type one diabetic for 12 years now, since I was a child. It's never been stable. Sugar levels up, down and everywhere.
When I entered my teens, control went out the window. Didn't take my insulin correctly (random boluses if I felt thirsty/high level symptoms etc) or only took it when I remembered (about once/twice a day).

I then got quite poorly as a result. Got a chest infection and ended up on ITU for a week on constant oxygen/nebuliser as my body was too weak. I also got DKA from being ill.
I recovered from that and my levels went back to normal. I went home.

My sugar levels stayed stable for a couple of weeks, then something slipped and they went back to being high. I lost all motivation for keeping them lower and the non-cooperation of the insulin began again.
And then I got DKA again. Ended up back in hospital. Regulated sugar levels, went home, good control for a couple of weeks. Slipped up, DKA, hospital again.

This vicious circle is getting worse. From the high levels I am getting reoccurring kidney/water infections, which is then sending my body back into DKA and back into hospital.

From my poor control I have neuropathy (nerve damage, numbness) in my legs, feet and hands. I have internal neuropathy (gastroparesis) which makes me full very quickly as my stomach does not empty itself properly which makes me vomit. I have hyperlipidaemia (high cholesterol) which has enlarged my liver and spleen. I also have anaemia.
I am only 20. These conditions are normally seen in diabetics who have had diabetes for 40+ years.

I just feel like I've given up. I don't know what to do. I've lost all motivation. I don't take any of my tablets and have my insulin begrudgingly. What's the point, I can't get it to work properly. I ring up the diabetes team at my local hospital who make me feel like I'm wasting their time and just tell me to keep increasing the doses.
I was put on an insulin pump last year which I fought for 4 years to get. If the diabetic team know I'm not using it properly it will be taken off me. It's helped me a lot (trust me, I was worse!) and if I lost that I don't know what I'd do.
I asked to be referred to a psychiatrist so that I could talk things through with her, as I thought I was in denial or something. She gave me a clean bill of mental health, and said I was probably just stressed with stuff. I am, I have a lot going on, but surely other people manage!

I jsut don't know where to turn. I am a nursing student, due to start my first placement in 6 weeks and just can't see myself passing and completing these 3 years without ending up back in hospital.
How can I look after other people if I can barely look after myself? How can I advise people to look after themselves and take their medication when I'm stood there like a giant hypocrite?

Sorry for the long, moany post. I've hit a wall and needed a rant, and someone to slap me and tell me I'm an idiot

 

[iHs]

Hi

firstly a big (((((Hug)))).

Using a pump to get ok blood glucose levels demands doing a lot of bg tests every day to work out whether your basal needs altering or your carb ratio needs adjusting. Are you able as a nurse to check your bg often enough?
to
When your bg levels are on a constant high can you do a TBR increase to get them lower until you can do a basal test.

Many things will make your bg levels change.

 

[mistee71]

Hi, I really feel for you although i'm sorry i cant help. You sound like your suffering from depression and deffenately need to speak to your doctor about it. I suffered depresion a little while ago and i actually felt the difference when put on anti depresants. I became so much more livelyer and felt i could cope with anything. Dont get me wrong, i'm not saying you have got it. Just would like you to go back to the doctors. As you have already said, you cant carry on this way.

 

[Elc1112]

Firstly, you're not an idiot and you are not alone. I've been diabetic for 20 years now. During my teenage years my control was awful. I only have DKA once, no idea how it wasn't more to be perfectly honest. I'm now in my late 20s and my sugars are much more controlled. I still have the odd high or low and I have days where I really can't be bothered to take this disease seriously. I've got background retinopathy (have had for a couple of years now) bit have managed to avoid any other complications.

Ok, now hear is the slap. The only person that can fix this is you. I'm sure you know that. Having said this, it's not easy to know how or where to start. You say the diabetes team make you feel like you're wasting their time. They might feel you are. There is only so much they can do if you're not willing to change. Show them that you want to get yourself out of this vicious circle and i am sure they will be more willing to offer you the help you need.

You're only 20 and have your whole life ahead of you. Sort yourself out now while you are still young and you can then enjoy the years to come.

Start by changing your diet. Low fat, low carb, low sugar, healthy. Get a good friend on board. Somebody that can give you a good talking to if you fall off the wagon, so to speak. I know they aren't nice, but do regular BMs. Try and get your levels down to under 10 and stable to start with. You can then fine tune and bring them down further. It might mean you have to test a lot, but it will be worth it. I promise - been there! Get your insulin sorted. Take it without fail and write down what you are taking and how your sugars are reacting. It will really help you work out your pattern.

Make an appointment with your diabetes team for 4-6 weeks time. This will five you time to make sone changes and prove to then that you are serious. You can then work with them to put together a plan that suits you.

You know how important this is and you don't need anyone else to tell you. Turning things around isn't going to be easy and you have some real work ahead of you. The results will be so, so worth it. Carry on as you are and what do you think the future holds? Things won't get better, they'll just get worse. Your studies and everything else you have worked for will mean nothing. Do something about it now!

Finally, you are NOT alone. Talk to you diabetes team, your friends or family. Or use this forum. Having a sense if anonymity means there is no fear of being judged. Nobody knows who you are, just the name you chose to use. I find its great for sharing things that I perhaps wouldn't be comfortable saying to friends and family.

Take care, chin up and keep us informed!

Emma x

 

[Elc1112]

Ps I apologise about the bad typing. I had a major op last week and am dosed up on painkillers. That plus an iPhone do not make for a good combo!!

 

[CarbsRok]

Hi Sparky,
I'm so sorry for the lack of care you are being given and your ill health.
Have you considered the posibility that it could be the insulin you are using could be causing your problems?
Perhaps try Animal insulin in your pump and see if that makes a difference.

 

[Glados]

So despite all the illnesses and challenges you've faced, you still qualified to become a nursing student? That's awesome! Why not try to get your act together over the next six weeks? You'll be a great nurse, with huge empathy for your patients, if you hang in there. Not taking your meds will only spoil things for you.

Don't get me wrong, it must be AWFUL when you try and are still rewarded with erratic bloods... But you've got your pump (which you say you really wanted) so take advantage of it and try to focus on the good days. Sorry the psychiatrist was so useless BTW, we don't seem to provide support for people until they walk around insisting that they are Napoleon, in this messed up country.

I suppose what I'm really saying is don't give up on yourself. Other people don't all manage with life, believe me, and you've done well to embark on training and have a job in mind, at twenty. Especially as you've been so ill (and depressed about it). I know people twice your age who couldn't fill in the application forms for your course, because they're so impractical and unfocussed :wink: .

Not ready to slap you yet... But I reserve the right to, just in case. :wink:

 

[imalittlefishy]

I feel your pain with the high bs ---> kidney infections ---> high bs...I'm trying to break out of the same cycle, though I have so far just about managed to avoid full blown DKA *touches wood*. It is absolutely horrible to keep trying and not getting results and I can understand why you're so discouraged about it. I can't really offer any advice that hasn't already been said, just support and encouragement - you can get through this! I'm also going (hopefully) going into nursing training in september and I'll pass on the message that one of my friends keeps plugging away at me (about diabetes and about other things) - you will make a fantastic nurse, you just have to put the effort in now to reap the rewards later. And I know how absolutely impossible that can feel some days but it will be worth it in the end. Massive hugs xx

 

[weeezer]

sparky...you probably have had many of us shed a few tears whilst reading this. for such a gorjus young thing like yourself to be feeling this way is absolutely horrible. i only wish i lived next door to you so you could come round for a cuppa & a cry. you really can't be going thru this alone, you NEEEED to get in contact with your diabetes team - i get the feeling by reading thru people's posts that many of us get 'fobbed off' and told to 'try this' or just get the feeling we are a statistic not a real live person with diabetes. i know how this feels. i can only say that i haven't realised this until now...all those HCPs, they go on what they know, not what WE LIVE WITH. you absolutely need to be feisty & bolshy and pester them til someone listens. you need to talk to someone (dsn?) and let them know you are having difficulty dealing with feeling this way. that you need some guidance & SUPPORT, that just to talk to someone over the phone will not do. you do sound rather deeply depressed and blummin eck, who can blame you. but the trouble with feeling so down is that everything is just too hard to deal with. it's too dark to see any light - and you need a shaft of light to be able to see a way out.

please please please talk to someone. maybe a helpful doc can support you? i have seen MANY dr's in the past couple of years, and they all make me feel like i'm wasting their time with my worries, but i saw a fab dr the other day who for the first time actually listened to me, he said it was ok to be worried about our health, that's what the NHS is there for, to help us deal with these worries and find a way to help. if only i'd have realised this myself, i would've gone back sooner & more times instead of burying my head in the sand, thinking the previous docs must know what they are talking about, sending me off with a flea in my ear and saying nothings wrong every time.

you say 'other people manage' - yeh some do. but lots don't. you do have alot 'going on' and you need help to deal with it.

we need nurses like you, who know about what it is to have these conditions and to empathise with your patients. you are not a hypocrite, you are living proof that we are human, not a perfect being who can run like a machine.

yes, you are young to be burdened with these 'complications' that diabetes can bring. but you can't deal with them alone. i know with the right support you can deal with these things and enjoy life again. but the support won't come & find you, you absolutely have to find it, be relentless and don't stop until you find that help.

please update, please PM if easier. xxxxxxxxx