Diabetes has ruined my life

[ExtremelyW0rried]

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.

 

[leking]

I'm not on a pump, but so you guys also have insulin pens? We're you bit able to get any fast acting insulin at all that day?? :/

46 is a good hba1c btw! Give yourself a break, 8t sounds like you're doing an excellent job.

When my bloods are high, let's say 18 or so.. I can still do things.. I've played a full football match for example with my bloods high. Ran a 10k while my bloods were rising... What is it about a high reading that is stopping you doing normal things?

How long have you been T1?

 

[Deleted Account]

Sorry to read about your ruined Christmas Day.
It sounds as if you do not have a backup to your pump. It would be good to talk to your diabetes team about this.
I have two backups
- small syringes for short term such as if my pump failed when I was out
- my old pens and spare cartridges for a couple of days.

Diabetes is often associated with depression. You sound as if you are suffering in this way too. Can you discuss this with your healthcare team and get some help.
Diabetes does not have to stop you living your life: you may benefit from some techniques to manage your diabetes rather that let it control you.

 

[ExtremelyW0rried]

I've been t1 for 25 years.

Yes I do have an emergency insulin pen back up but it's very hard to know how much insulin to take with them as I'm super sensitive to it. I find that on my pump 0.3u will drop me as much as 10mmol although I used to work in half units when I was on Mdi.

I changed my set on Christmas Day and it did track down, it just took a while as it was obviously meeting a rise where I'd been without insulin. By mid afternoon it was back to 6.2mmol but it was too late then as we were in a restaurant and dinner was over for everyone else.

 

[therower]

Diabetes control........... 80% mental/emotional. 15% medication. 5% winging it.
Your diabetes has got you exactly where it wants you. At its mercy. It's dictating life for you.
The more you fight the stronger it becomes. It will thrive and grow on your negativity.
You need to find a more positive approach to life.
A pump failure shouldn't create as much distress as it did.
A high BS level on Christmas Day shouldn't be a problem if your long term (HbA1C) control is as good as you say.
Life is only ruined when it ceases. You was fortunate to see Christmas Day, that is life, be positive.
Consider your avatar. I feel it says too much about you as an individual. ExtremelyLUcky is what it needs to say. You're here , you're alive and you're a bad ass in control diabetic.

 

[ExtremelyW0rried]

I wouldn't eat with a starting sugar of 18mmol, particularly not knowing if the new set was definitely working or not. I've had a lot of set failures recently for some reason, I have lost a lot of weight so not sure if that is why. I use the silhouettes. The 9mm quicksets were no good and the 6mm just fell out.

 

[ExtremelyW0rried]

The trouble is I feel quite unwell once my bloodsugar hits about 14 and by 18 I feel very unwell.

 

[ExtremelyW0rried]

I picked the set failure up before it hit 18 but it carried on up unfortunately.

 

[himtoo]

hi there @ExtremelyW0rried

I can totally understand the frustration at your christmas day being sabotaged by a pump set failure.
last christmas my wife ( non diabetic ) was sick in bed with bronchitis so her day was ruined.

46 is an excellent HbA1c - not mediocre at all.
Many type 1's struggle to achieve that sort of level.

from what you have written it does sound as though you are experiencing a bad patch in your "self"
perhaps have a look at this http://www.diabetes.co.uk/emotions/diabetes-burnout.html

 

[ExtremelyW0rried]

To be honest I feel I'd be better off dead. I'm a drain on the NHS and it'll only get worse when I develop complications.

 

[TERRYBURGE]

I've been a type1 for 27 years but not on a pump. I've found rightly or wrongly that if I've got a high blood, sometimes when it goes to over 24 & I feeling like ****, I just give myself a shot of about 10u of Novorapid & i feel better in minutes!

 

[rayhigginson]

Don’t mean to be rude but how old are you? (To be honest it don’t matter) but no matter how old you are want illness you have your life is worth living nomatter how hard it’s gets! I have lost it all b4 ( family/friends/work etc)and got it back and am now losing it all again (family) and the illness hasn’t helped but you got to keep going!

 

[Jaylee]

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.

Hi,

I can't help noticing the "horse" bolted after the mention of a pump set fail on Christmas Day?
Your post in essence seems to infer that certain "life choices" have been swayed by your T1 diagnosis.
I also pick up on regrets in your past posts regarding where you stand with your family unit & the fears of passing on diabetes to your child.
In short, you seem to be suggesting it's all held you back. & not just a pump grinch on Christmas day.

With the best wishes for you in 2018. I sincerely hope you find professional counselling..

 

[ExtremelyW0rried]

I'm 35.
No it's not just the pump issue on Christmas Day although that felt like the final straw.
It's just such a ****** existence and I feel that's all it is. Just waiting all the time for things to get better and they don't. Living from sugar to sugar. Life ruled by numbers.
It's stopped me doing lots of things. It now stops me taking my children on holiday or to theme parks etc. It's just too much worry.

 

[Gemma2]

Remember. Always carry a back-up pen with you when you are out. I take one with me even when I go shopping.

 

[becca59]

Lots of people with depression talk like this, diabetic or not. It is depression, get help, it will be the best thing you can do for yourself. Good luck!

 

[Picci]

I agree with other posters, support could be extremely beneficial. I was diagnosed age 10, (I'm 49 now,) diabetes hasn't stopped me doing anything. I left the UK to live abroad when I was 20, I had no plans as such and my parents were worried sick. I traveled, worked and my diabetes just fit into my life, I've got a healthy daughter, I have yearly holiday abroad. You CAN do it, get some support please xxxx

 

['Scilla]

To be honest I feel I'd be better off dead. I'm a drain on the NHS and it'll only get worse when I develop complications.

I have had diabetes for 50 years and started with a glass syringe! To be honest I think you are perhaps generally low and could do with discussing how you feel physically as well as mentally with your GP. It is well known that anyone with a longterm medical condition is more likely to suffer with depression. I have also rebelled and felt it was ruining my life in the past but now it mostly doesn't bother me. I did have a number of very high blood sugars over Christmas, but as I do not have a pump I was able to "knock them down" with extra humalog injections. (Not to be recommended before going to bed). Sorry it makes you feel so grotty but that is a blessing in disguise really, as you are getting warned and so are less likely to really lose control and end up with complications. Bless you.

 

[ExtremelyW0rried]

I just feel like I do everything right and it still doesn't work out half the time. I know that's the nature of it but it's so frustrating.
I barely eat - less than 30g carbs a day ordinarily - I don't even low carb. I just don't eat. I don't sleep because I check my blood sugar every two hours at least. I exercise. I do all I can and still I see numbers in the teens some of the time. It drives me crazy.
Clinic aren't bothered. They only bother now if you have a low blood sugar. They don't care about anything else. They didn't even like mine in the 4s last time I went. Basically you can't win.

 

['Scilla]

Suggestions which might help...
Find a local diabetes support group.
See your doctor for a possible depression assessment.
Try to go for a walk each day to raise your morale.
Write down what you are doing during the day and how it affects your blood sugars. (Actually after some years I found this really unhelpful as it made me feel "unwell" to record everything! My doctor said "it's not goingto go away you know so you must get to grips with it!) So although I test I just rely on my test kit memory! It is amazing how many things can affect your blood sugars, weather, sleep, exercise or even concentrating hard for a while etc.
Perhaps you need a bit more insulin/carbs?
Look after yourself and give yourself relaxing times which don't necessarily involve food. Take care, x.