Diabetes has ruined my life

[tigger]

My pregnancy was very stressful. I'd had three unsuccessful rounds of IVF first and then fell pregnant naturally so it was all pretty fraught. It then ended with a very ill newborn on a ventilator on Christmas Day which was horrendous although thankfully my daughter is now fine.

Unfortunately the consultant id seen for years and trusted left just after I had my daughter and since then my appointments have been with different consultants - none of whom are permanent.
I don't really like the dsn as she basically implies if it isn't how it is supposed to be then you must be doing something wrong. I found her extremely patronising last time I saw her and feel reluctant to go back so I'm not sure where to go from here.
If I don't eat my sugars stay between 5-8. It's definitely eating that gives me the problem as it's so unpredictable. I've lost over a stone and a half over the last few months and my bmi is now just under 18. I know I don't have much more weight to lose but I feel like if I can't sort out my blood sugars no one else will be able to either. I told the stand in consultant about how erratic they were after food and he advised me to do basal testing and DAFNE. But it's no help. I KNOW how to adjust, I've been doing it for years. I've been on a pump for a decade.
I'm just stuck. I'm pretty sure the not eating is making me feel more depressed too.

And this is why you need to take someone with. You've done everything right and you need to get them to understand this. If you can't communicate this well enough alone maybe you can with your husband there. Take facts, figures and times and bore them with data.

I suspect however that you need a change of mind. A change of insulin might give you the needed change or various forms of psychological help. No one is denying your experiences but I suspect they're both physical and psychological and the 2 can't be separated. As it's said just because i'm paranoid it doesn't mean they aren't coming to get me..... You have a problem you need to solve, please for your sake and your children's marshal all help you can to do so. Good luck.

 

[tigger]

Ps 99% of the dsns i've met are idiots and not worth seeing if you have any experience. 1% are lovely and helpful and go above and beyond.

 

[ickihun]

You definitely know more about your diabetes than a random dn. Work together to solve the problem? The have medical expertise but you have your bodies reaction expertise. They have to work together. Getting a mind thinking alike dn is always half the answer! For sure.
Educate your dn about YOU and they should help to apply correct medical care. Tell them..."well I react like this on my pump or basal increase". Tell them what's going on. Mentally too.

 

[donnellysdogs]

I'm just wondering... thinking outside the box.

I had probs after 5 years on a pump. Took 3 hospitals to believe me... numerous A&E visits etc....

But you say that without eating your basals are perfect....

My body couldnt handle new cannulas.... but I am just wondering how your body is handling a bolus specifically....

Have you thought that it may be the bolus acceptance in your body rather than the food?

Do you ever need to just correct from a high level
and does your body always react the same to a correction?
Do you come downto target levels at 5 hrs ok?

 

[Fairygodmother]

Loved ones, that's a pretty sick joke. I'm sure I'm a really great prospect, hi nice to meet you by the way I'm permanently sick and will never get well again. I might start sweating and totally embarrass myself at any time. Here look at this it's a scrap of paper soaked in blood.

No I do not have any love and yes you're right it is a mystery why I keep living with this. Too stubborn for my own good I guess.

*** NoKindOfSusie, all humans bleed, sweat, fart, pass waste . . . IMO anybody who expects to link up with a sweet little freshly-laundered plastic doll isn't worth a second glance anyway. If someone likes you it'll be you, the thinking, feeling, smiling, kind person who's also interested in them.
T1s a really good eliminator of those who haven't got what it takes to deal with all the ups and downs of life. Lots of us find partners, spouses, good friends after diagnosis: stop being so down on yourself.
Not long after I met him indoors he discovered what I was like in the worse kind of hypo - the aggressive kind. The kind I hardly ever have. I gave him a right upper cut to the jaw. Poor man! He didn't slog me back, for which I'm very very grateful. And he stuck with it. I'm not suggesting anyone does as I did; he really didn't deserve it and I'm still really sorry it happened. He's had the odd times when the less attractive parts of being ill have needed my help too. It's what one does.

 

[Fairygodmother]

ExtremelyWOrried, have you made an appointment to see your GP or diabetes clinic again yet? I agree that it'd be good to take someone with you. Write everything you want to say in a list beforehand too so that you have it to make sure it's all covered? Lots of us are really hoping you can turn this around and get out of the nasty place you're in right now.
Good luck, and please let us know how you get on. Be stubborn. Don't leave the consulting room until there's a sensible strategy in place.

 

[Macdonald1995]

I eat what I wanted over the Christmas and new year within moderation, that’s the key eat in moderation and take your insulin.
Life is too short, my dad died very suddenly in April with a massive stroke, that showed me that you have to live your life as you never know what might happen. Get out there and meet people, do things that you use to do before diabetes

 

[ExtremelyW0rried]

I'm just wondering... thinking outside the box.

I had probs after 5 years on a pump. Took 3 hospitals to believe me... numerous A&E visits etc....

But you say that without eating your basals are perfect....

My body couldnt handle new cannulas.... but I am just wondering how your body is handling a bolus specifically....

Have you thought that it may be the bolus acceptance in your body rather than the food?

Do you ever need to just correct from a high level
and does your body always react the same to a correction?
Do you come downto target levels at 5 hrs ok?

When I change my cannula I have to have a temporary higher basal rate for a couple of hours but I understand that isn't that unusual? Since I've lost weight I've had a lot of trouble with sets failing, not when i put them in but one or two days later. My blood sugar rockets and when I take it out it's bent double almost (silhouette cannulas).

Sometimes I get a rise in the morning without eating. Woke up at 4.2mmol this morning and rose to 6.8mmol without eating. Had 0.1u and now back at 4.6mmol.

I have lost all faith really in the hospital since my consultant left. The dsn is very officious and spoke to me like a school child. They aren't bothered about anything except low blood sugars - they didn't like 4.5 when I last went. She told me my a1c would be better in the 50s as they don't like adults to run lower than that. She just looked at my results and described them as 'nice and safe' and that was all she was interested in. She wasn't bothered about any higher readings.
I'm not having a lot of hypos and my awareness is good anyway. But there seems to have been this shift to running higher, my dad has the same thing when he goes.

 

[himtoo]

When I change my cannula I have to have a temporary higher basal rate for a couple of hours but I understand that isn't that unusual? I always run a TBR for an hour or 2 at +20% , it seems to help the new sett to start better
Since I've lost weight I've had a lot of trouble with sets failing, not when i put them in but one or two days later. My blood sugar rockets and when I take it out it's bent double almost (silhouette cannulas). can you ask about different sets ?

Sometimes I get a rise in the morning without eating. Woke up at 4.2mmol this morning and rose to 6.8mmol without eating. Had 0.1u and now back at 4.6mmol. this is quite normal for me too.

I have lost all faith really in the hospital since my consultant left. The dsn is very officious and spoke to me like a school child. They aren't bothered about anything except low blood sugars - they didn't like 4.5 when I last went. She told me my a1c would be better in the 50s as they don't like adults to run lower than that. She just looked at my results and described them as 'nice and safe' and that was all she was interested in. She wasn't bothered about any higher readings. it is your Diabetes -- not theirs -it might be difficult but you need to press home that fact to this DSN -- I find taking someone helps -- stops them being so dismissive
I'm not having a lot of hypos and my awareness is good anyway. But there seems to have been this shift to running higher, my dad has the same thing when he goes.

replies in blue inside your post !!

 

[iHs]

Hi,
I've been type 1 for 51 yrs now and started to use a funded pump 7.5yrs ago. When I first got my Combo pump everything was lovely etc but after 4 months and trying a different technique to fill the cartridges, I then started to get the occlusion warning going off at all different times in the day and night. It took me ages to figure out what was going wrong as it wasn't the cannula or the pump. It was a build up of air in the vial of insulin that travelled into each cartridge fill and was so large that it went across each cartridge fill but couldn't be seen until pulling off the black cartridge cap. Once using a new vial and going back to my old way of filling cartridges the occlusion warning stopped but the whole experience made me get very worried and fed up. I felt even worse reading messages on theforum posted by people who aappeared to have perfect control with their pump. It got to the stage where I felt like I was trying to walk on a tightrope and petrified to fall off. The pump nearly landed in the water butt in my garden because I felt like it was ruining my quality of life. It was my consultant that put me straight and told me to only basal test for no more than 5hrs at a time and to adjust the rates accordingly but not to basal test every day and to leave a gap of a few days and that it didn't matter that much if my basal rates were spot on because the bolus could be used to correct high bg or eat some carb if bg was a bit low. So, take your time with basal rate adjusting and do what you think will be right for you. You will get there in the end even if it takes you ages to achieve it. Don't worry.

Re medtronic sets.......like all infusion sets it takes trial and error for a lot of people in inserting them correctly. Loads of people had trouble with inserting Inset II and Mio sets. There's a knack. If you find silloettes are kinking at the end, then that will shorton their time left in the body. So.....make some noise with Medtronic pump reps and your dsn and get some sets that you can use ok. This will help to make you fill a lot better about using a pump so that you dont feel down in the dumps like you do.

Cheer up Chicken......there's worst things at sea
xx

 

[ExtremelyW0rried]

Hi,
I've been type 1 for 51 yrs now and started to use a funded pump 7.5yrs ago. When I first got my Combo pump everything was lovely etc but after 4 months and trying a different technique to fill the cartridges, I then started to get the occlusion warning going off at all different times in the day and night. It took me ages to figure out what was going wrong as it wasn't the cannula or the pump. It was a build up of air in the vial of insulin that travelled into each cartridge fill and was so large that it went across each cartridge fill but couldn't be seen until pulling off the black cartridge cap. Once using a new vial and going back to my old way of filling cartridges the occlusion warning stopped but the whole experience made me get very worried and fed up. I felt even worse reading messages on theforum posted by people who aappeared to have perfect control with their pump. It got to the stage where I felt like I was trying to walk on a tightrope and petrified to fall off. The pump nearly landed in the water butt in my garden because I felt like it was ruining my quality of life. It was my consultant that put me straight and told me to only basal test for no more than 5hrs at a time and to adjust the rates accordingly but not to basal test every day and to leave a gap of a few days and that it didn't matter that much if my basal rates were spot on because the bolus could be used to correct high bg or eat some carb if bg was a bit low. So, take your time with basal rate adjusting and do what you think will be right for you. You will get there in the end even if it takes you ages to achieve it. Don't worry.

Re medtronic sets.......like all infusion sets it takes trial and error for a lot of people in inserting them correctly. Loads of people had trouble with inserting Inset II and Mio sets. There's a knack. If you find silloettes are kinking at the end, then that will shorton their time left in the body. So.....make some noise with Medtronic pump reps and your dsn and get some sets that you can use ok. This will help to make you fill a lot better about using a pump so that you dont feel down in the dumps like you do.

Cheer up Chicken......there's worst things at sea
xx

I've used the silhouettes for over 8 years so I don't know why they are suddenly a problem unless it is the weight loss or sudden scar tissue build up maybe.
I tried the 9mm quickset before and that kinked all the time and the 6mm which I had some success with but was hit and miss. Until now the silhouettes have been by far the best. I've always been fairly slim and the angled ones seemed to be the best bet. It's just now that I'm having a problem for some reason.

 

[iHs]

I've used the silhouettes for over 8 years so I don't know why they are suddenly a problem unless it is the weight loss or sudden scar tissue build up maybe.
I tried the 9mm quickset before and that kinked all the time and the 6mm which I had some success with but was hit and miss. Until now the silhouettes have been by far the best. I've always been fairly slim and the angled ones seemed to be the best bet. It's just now that I'm having a problem for some reason.

That's yr problem unfortunately. You are too slim and need to put on some weight around your tummy, legs and backside. Also scar tissue does tend to happen for most people using pumps so ask for a scan to be done at your hospital. I think someone posted a msg on fbook about a cream called Colipex by Harmonia. It can break down scar tissue but isn't available in the UK so needs to be purchased through Europe.

 

[donnellysdogs]

When I change my cannula I have to have a temporary higher basal rate for a couple of hours but I understand that isn't that unusual? Since I've lost weight I've had a lot of trouble with sets failing, not when i put them in but one or two days later. My blood sugar rockets and when I take it out it's bent double almost (silhouette cannulas).

Sometimes I get a rise in the morning without eating. Woke up at 4.2mmol this morning and rose to 6.8mmol without eating. Had 0.1u and now back at 4.6mmol.

I have lost all faith really in the hospital since my consultant left. The dsn is very officious and spoke to me like a school child. They aren't bothered about anything except low blood sugars - they didn't like 4.5 when I last went. She told me my a1c would be better in the 50s as they don't like adults to run lower than that. She just looked at my results and described them as 'nice and safe' and that was all she was interested in. She wasn't bothered about any higher readings.
I'm not having a lot of hypos and my awareness is good anyway. But there seems to have been this shift to running higher, my dad has the same thing when he goes.

I used to be similar on pump too. I was too lean (thin, not just lean) at time due to stomach / colon messing me about...

Have you tried different sets? Are you using plastic ones?

I'm actually thinking differently to others and think that the highs you are experiencing are actually quite similar to how I started off with problems on my pump after 5 years brilliant levels.

So for going off at a different tangent here, but I experienced similar but I had exceptional consultant and nurses. Unfortunately I moved and had to change hospitals. Things so bad at new hspural I ended up having the diabetes manager meeting me in our home for 4 hours and eventually (4 days later) admitting they didnt have the knowledge to care for me and accepting I knew my body but needed tertiary care at another hospital. This too has been **** tough even at tertiary hospital but I manage.

However, for you.. some things are sounding quite similar to my experiences.
I will say though that a rise that small in morning is nothing different to that of what a non diabetic may get.. a. Rise from 4 to under 7.0 is not that worrying to get stressed about.

My present consultant says that I am in top 5% of patients for my levels!! Hba1c.... but admits the swings are not good as he can see themfrom my cgm.
For me, I think it crazy that I am in top 5%, when my levels are full of swings...

 

[Freema]

I am so fed up. Every special occasion. Every 'enjoyable' time. There it is. Ruining everything.

My pump set failed at 12pm on Christmas Day so I had to sit and watch all the normal people enjoying Christmas lunch with a blood sugar of 18, feeling ill, and I couldn't eat anything. One piece of toast I had on Christmas Day to eat and that was all. I know it's not the end of the world but it just spoils everything. I can't plan anything in case it's a day my blood sugars aren't behaving. I can't go out for meals. I can't go on holiday. I can't sleep more than two hours in a stretch as I have to get up to check my blood sugar. And after all that my a1c remains mediocre at 46. What is the point?! I may as well give up.

It's not like I can think in six months it'll be better. In a year. Two years. Because it won't ever be better, this is how it'll be for the rest of my life.

I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them. Mine dominates my life every second of the day and night.

Sad you have been so unlucky at Christmas , But please try to focus on the things you can and try to find more of that , send you a virtual hugg , I think both type 1 and type 2 can feel like a curse sometimes ....but all we can is to enjoy what we can do and there is so much we can do .... I focus on my hobbies when I think life sucks

An HbA1c of 46 is okay don’t use that against yourself

 

[Freema]

Hey dear eat some more to get energy for your fight daily , don’t eat that little

I once had a dream which contained this following poem , rather weird as English is not my language on a daily basis:

“ God bless you with gifts every day, you never can tell in what way , but don’t live your life in denial ; thus refuse every gift be a trial “

 

[tigger]

Is there more than 1 dsn? I found the main one nice but not particularly helpful but the other, when I was having lots of initial set problems was great and showed me how to hand insert silhouettes (one of the few techniques you can't google). I use mios (back and backside only) after trying quickset (total failure), silhouettes (good on stomach), quicksets (steel, good but stopped working for me after a while and weren't sticky enough for bottom). Either way, power is with the doctors so go for them.

Your rise in the morning is normal and sounds like dawn phenomenon (which is different from somagyi effect). Dawn phenomenon is your bs rising simply from getting up. Somagyi is when you hypo and it goes massively high in the night so you wake with a high bs.

 

[Notorious]

It is impossible to live life at all in my experience.

Tonight dh said let's get a take away as it's new year. Well obviously I can't eat anything from an Indian take away. I mean I can't eat an apple so I think rice may be out of the question.
Said I'd order something for him but I would just have a Diet Coke and now he's annoyed because he says he doesn't want one on his own. However if I order it and don't eat it he will be more annoyed as it's a waste of money. But I don't want to start 2018 with a blood sugar of 20 so will just cook something for him and the children and go to bed I think.

Chicken shashlik is a good lower-carb Indian option.

 

[Lynne C J]

Chicken shashlik is a good lower-carb Indian option.

Why can't you eat rice, it's usually a really good, slow acting option?

 

[Notorious]

Why can't you eat rice, it's usually a really good, slow acting option?

I myself do eat rice, but if you're a low-carber, it's a good option.

 

[donnellysdogs]

Why can't you eat rice, it's usually a really good, slow acting option?

It can slow release badly for some T1 diabetics and Indians / chinese can throw levels upward far beyond the 2-3 peak bolus time.

It takes time and patience and reasoning to handle takeaways and to be honest for me they played hell right through the night with my levels. Plus fact for me.. I had bolused hugely on one occasion for chinese and was promptly very, very, very sick and literally couldnt keep anything down. Told my hubby to get ambulance.. passed out cold before tgey arrived..

For me personally, ;now I can't eat them anyway) but my first choice would be to buy a supposed carb counted ready meal takewway and try at home for practice runs before having...

But thats me.. we all handle things differently...