Im struggling with my insulin pump, can you help me ?

[Reece88]

im almost 18 years old and i have been diabetic for nearly 14 years, up to the age of 14 i was on pens but then managed to get an insulin pump, although i though it would be so much easier on the pump as i hate needles, but i have been struggling for the last 4 years and my doctors and parents don't seem to understand me or get how im feeling. they just make it out to be that im really lazy and don't care but i do care so much but i just cant to it, i have pretty much given up now. no one know how much im struggling.

i struggle with doing my blood glucose "sugar level" which i know is bad as with the pump that's what it relies on to make it all correct, but no matter what i do to try and help me do it / remember it i just cant. i have tried alarms, friends, phone calls, posters, notes but none seem to work......

also i always forget to bolus when i eat food, but it is the same as the blood glucose i really struggle to do it but i don't know why. i have tried so much but it never works. i try something new but then with in a week im back to stage one again- not doing it or forgetting it. it getting to the point now where i just cant be bother to even try as i know it will end up one way....

with the pump you have to change it every three days which i always forget to do which does not help me, how can try and remember as alarms, friends, phone calls, posters, notes don't work with me.

even why i try so hard and do it all how i am so-post to it makes me feel rubbish in my self, it makes me feel ill. and even when i do it all right my sugar levels never seem to go with in 4-6 they are rather very high, high or low.

im scared that the doctors will take the pump away from me which is not good as i hate needles, but no matter what i try it never works, i need help, tips and tricks and your person experience to help me other wise i don't know what i will do.

 

[Dougal]

Reece, hi, hello. Do you think that you have accepted that you are Diabetic? It probably seems like a strange question, but I find that when my mind is not 100% on board with what I have decided, it can set out to help me fail no matter how good my intentions are. Diabetes is huge, I have had it for nearly 28 years now and I am learning something new everyday. I am also certain that I didn't fully accept diabetes until about 5 years ago. I kept telling myself that diabetes was something that happened to other people, not me, I wasn't strong enough, wise enough or able to make it work for me.

I think you are intelligent, you obviously know what needs to be done but I can't help but feel that there is possibly something deep, deep inside that is preventing you from doing what you know needs to be done.

Please sit down and think about this. You are not perfect, no one is no matter how they may seem. You are diabetic, you can't change this but you are armed with the knowledge of what you need to do.

You don't need to be 100% today but, to quote someone smarter than me, "a journey of a thousand miles starts with a single step." Perhaps you could try testing your blood sugar now. That's one step. The next step might be that the next time you take a bite of food to ask yourself "have I tested my blood sugar?" If not, do it! You are capable. It is, I think, a bit of a cop out to say that you don't remember. You can't forget that you are diabetic. You have already stated that you know you have to test.

You are the only person who is able to change the situation that you find yourself in, and I think that you have posted here because you want to change the situation, the one you are in is not a good place to be.

I BELIEVE IN YOU, AND YOUR ABILITY TO SORT THIS OUT!

 

[Reece88]

thanks dude, that means a lot to me and yeah i will start with one step as you say and move on from there.
but as you ask "Do you think that you have accepted that you are Diabetic?" i have never really thought about it. but i will start to think about it now. i know im not in the best position right now and thats why i asked you guys for your help as normally i keep myself locked up but i know i need to sort things out now .

 

[Lucypieee]

Hi Reece,

Dougal is right. Acceptance is key, if you haven't accepted. And taking small steps would help.

Try making your diabetes into more of a routine... I'm not brilliant with blood testing, but as I don't want to lose my pump I know I need to test.

Maybe focus on making sure you blood test at least once or twice a day and build it up. First thing in the morning when you wake up take a blood test. If you forget, blood test as soon as you remember. As Dougal said, if you think, have I blood tested and you can't remember, check! Your blood meter will have a memory system.

I'm slightly lax with changing my set every 3 days, but if it needs changing I will change it. I've been in and out of hospital with DKA enough times to know that not looking after myself is worse.

I find that having some sort of goal or motivation helps. Just think about what motivates you and try to make that relevant with your diabetes.
I hate people telling me what to do with my diabetes and watching me blood test etc. so I make sure I blood test so I don't have people looking over my shoulder every step of the way.
Another thing that helped me was having a blood testing kit that I liked, I use the Bayer Contour Next USB Link which connects to my
Medtronic pump. Easy to use, rechargeable and I don't have to input my BG information all the time. I use a softclix finger pricker as I find those more comfortable as well.

You mentioned your dislike of needles, have you discussed he possibility of being granted funding for a CGM? The NHS don't fund a lot of these, but if it is medically necessary they will. A CGM won't completely eliminate blood testing, but it will mean that your blood glucose is being monitored and,provided you have a pump that will link to it, stored on your pump. You place a fresh sensor on yourself every few days (I know people that can get sensors to last 10-14 days) and that will monitor your BG readings... You will need to blood test every now and then though to make sure the sensor is accurate and that you results are similar on both readings.

If you have any questions, just shout.


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[Spiker]

A CGM will also remind you, quite persistently, to do blood tests at least 2-4 times a day.

There's a lot of good advice here. In particular, when I wasn't testing, the advice to just set a rule for myself of testing twice a day, really worked. I started testing again at bedtime and when I got up. It was a huge improvement on not testing regularly at all. It improved my confidence and my belief that I could do it, could manage. Setting goals that are too hard at first is just demoralising. I've been there and I know how you feel. Set some small, achievable goals and build up from there.

You can do it!

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[Dougal]

Trying not to be too negative, but the chances of Reece being offered CGM at this point are so slim, I didn't think it was fair to even mention it!

 

[Reece88]

thanks guys this means alot to have your support as some of you have felt the same way as me. but dougal is right, they are so hard to get and i have tried to get one but the nhs will only let you have it for max 7 days then you have to get funding again just for a week at a time. but i think small steps now that i have you guys behind my back will help as i know im not the only one now

 

[Dougal]

I am always here, and so are so many who are much, much more helpful and supportive than me.

Start with small steps, just one or two a day will be loads than you are doing at the moment. Once you are on a more steady path and your healthcare professionals can see how much effort you have made, and are making, then you can mention CGM to them. Once they are sure you're serious and that you will apply as much commitment to the CGM as you have to changing your life for the better, they will back you, just as I do!

Have you tested your BG today?

 

[Julie1471]

Reece88, I think everyone goes through, some more often than others. I only got a pump last year and yes it is hard work and as you have said a pump will only use the info you give it. And I know that you are 18, which can still be a hard age to be diabetic. But once you have taken it by the horns and said yes I'm diabetic and I admit that I am is a huge step, and when you can do that, you will feel better, then take on the small steps. We all still go I hate being diabetic, but the biggest goal, can also be the smallest one, to start with and that's the few words "I am diabetic" . Then start on the other goals. Good luck, btw. You've started your first steps by posting here.

 

[Molly.Driver98]

I've been on the pump for 6 years and the doctors claim that my blood levels are due to me not trying hard enough, You have to accept it because I was 6 when I was diagnosed and I refused to accept it and it made me really sick because my levels went all over the place. When you accept it then it gets easier

 

[Omnipod]

Reece
I used to be like that too. In hindsight, I now believe that I did not take my diabetes seriously. I got through each day as long as i did not hypo. I ate whatever, whenever. Having highs never bothered me or affected me. Only hypos did. I was young. At uni, drinking, clubbing and lived life just like my friends. At the back of my mind I believed I was trying and that I was doing ok. I too had a pump which made life easier as I knew I was getting a basal rate. When I ate, I did not test and all i had to do was press the buttons a few times to cover the food but I never thought about it too much. Before I knew it (10 yrs on), I started getting complications which come on over night. When the dr told me that I had maculopathy in both eyes and I could loose my eye sight, thats when it really hit me. That fear and shock forced me into taking my diabetes seriously.
I have since turned my life around. i keep a food diary, Im on a tubeless pump and I watch everything that I eat and drink. I test up to 10 times a day and will not go without insulin. My HB dropped from 12% to 7%. Now days if Im high, I feel awful.
After making a huge effort, my eye complications seem to have stabilised. Its also easier now to stay in control. You really do have to discipline yourself and put your diabetes treatment first.
You really dont want to wait till you have complications to make this change.
You sound like a bright young fella so dont allow yourself to carry on forgetting. Set an alarm on your pump to test your blood.It takes 2 minutes. Carry your meter with you in a bag.

In the next year or 2 Abbot will be bringing out a bloodless glucometer.
https://abbottnextfrontier.com/flash-glucose-monitoring

You have a whole life ahead of you. You have so much to look forward to. Diabetes is a way of life and once you get into a good routine, it gets easier.

Keep us posted on your progress

 

[Reece88]

dougal i have just from your coments this morning i have done it at lest 4 times today which i would like to say thank you for.

ommipod do you have anyother tips than just the alarm as when its on me i never feel or hear it go off which is why i always forget to do it.

molly.driver98 im glad its not just me that gets told that its me not tried ect but i hope i can soon turn it all around for the better.

Julie1471 my first step was posting on here as nomily i keep my self locked up and dont let any body in but i know that most of you guys (and girls) have been though the same thing and can help.

thanks again every one, you are really helping and i will let you know how tomorrow goes

 

[JazChilds7]

Hi,

I've had my insulin pump for nearly three years and i love it to pieces, it has made my life so much easier I think maybe for you it's a question of getting into a routine? Like testing your blood sugar as soon as you get up in the morning, like have your monitor next to your bed so its the first thing you see when you wake up and the same when you go to bed, if you make sure that it's there in the morning then you may as well test before you go to sleep that way it'll eventually become second nature and you're still testing at least twice a day! Also maybe do you think you're not bothered about working on your control because you think that the pump isn't working for you? The settings on the pump can be so precise that the smallest change can make a big difference so, it wont take long to see issues with the settings to make it better for you. Maybe its just baby steps that are needed to see that the pump can be great?

Hope I've been some help and not just chatted rubbish at you

 

[Julie1471]

Good luck today, will check back later to see how you've got on. And well done on the amount of tests you did yesterday.

 

[Reece88]

so far so good guys (and girls) all the correct medication and bg testing was done thanks to you guys pushing me and supporting me, im up to 5 times today although i did my dinner one a bit late. although i don't feel to good with my self as it has not been like this for a while it will take some time to get used to it as my body is totally different when it has the correct amount of insulin inside me

 

[Dougal]

Yippee!!!!! Well done. Small steps are being taken and you, Sir, are not where you were yesterday!

Unfortunately, I have one more thing to ask - please stop trying to be perfect! As Andy12345 said in another thread, it's not how many times you fall over that count- it's how many times you get back up that's important. You are so much further on today, than you were yesterday. I am impressed!


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[Julie1471]

Omg, don't try to be perfect with numbers, had my DSN have a go at that one as I wanted 5-6, she said that will never, never happen as the pump is playing catch up, with bloods. She tells my hubby to get the tissues ready when she gives 1a result, as I cry, because I could never get it down. WELL DONE ON THE 5 TIMES TESTING, done better than me today, but had supply at school but at tea 4.1 rose to 5.6. So feel good better than me

 

[Omnipod]

well done Reece.
Are you keeping a diary of your bloods, your carbs and your bolus?
When you keep a diary and then at night before bed you join up all the dots and see a graph of what your sugars are doing, That will prompt you to do it again the next day....
See the graph below....i set mine up myself . T-Time, BG - Blood glucose reading, CHO - Carbs, QA- quick acting insulin, BI - Background insulin,

In the table below, id put a dot in the block then at night before bed or the next day, id join all the dots up and see what my sugars are doing and i find this way easier to fine tune my pump.

Keep testing fella.

 

[jack412]

Hi,

I've had my insulin pump for nearly three years and i love it to pieces, it has made my life so much easier I think maybe for you it's a question of getting into a routine? Like testing your blood sugar as soon as you get up in the morning, like have your monitor next to your bed so its the first thing you see when you wake up and the same when you go to bed, if you make sure that it's there in the morning then you may as well test before you go to sleep that way it'll eventually become second nature and you're still testing at least twice a day! Also maybe do you think you're not bothered about working on your control because you think that the pump isn't working for you? The settings on the pump can be so precise that the smallest change can make a big difference so, it wont take long to see issues with the settings to make it better for you. Maybe its just baby steps that are needed to see that the pump can be great?

Hope I've been some help and not just chatted rubbish at you

I'm a T2 but it's the same thing, you have to make it a habit where it's like breathing, you just do it

 

[Reece88]

thanks guys and it alls seems to be okay, i have been testing and blousing. and omnipod i will try using that table, hopfully that will help.

i have hosp tomorrow at 8:45 but i have a feeling that they will take my pump and funding away and i have a feeling my hb1c will be very high in the 11s