Life with diabetes

[NoKindOfSusie]

Not to mention my memory is shocking for a 21 year old.

This is what really scares me to death from a work perspective, I have a job where I have to remember to do a lot of things, one day soon I will make a major mistake because everything you ever do is just overridden by worrying about what the last test was, what the next test will say, how you're doing today, this week, this month. Human beings were not meant to have to have this in their heads all the time, even people who were in this situation years and years ago just did stuff a couple of times a day.

 

[NicoleC1971]

Over 6 years

Having 3 hypos a day is rubbish and it seems evident that you need to reduce your doses or take less metformin. Can you phone your team and discuss a conservative approach to that.? I am sure Dafne will help a lot but you need to do something before then. Agree with the previous poster that the more you brain gets used to less glucose then the greater your tolerance of lower blood sugars that would have given your symptoms of hypo. Btw losing hypo awareness is one of the criteria for getting FSL as is testing more than 8 x per day so I would emphasise this to your consultant at next visit to see if you can save your lovely boyfriend some cash!

 

[kev-w]

That is also my worst possible fear. There is a difference between forgetting something and never having known it. If I ever got to a point where I had forgotten what real life is supposed to be like I would just be done at that point.

For me pre sugar's a utopian dream, if I try hard I can remember the taste of toffee apples and parkin, I have a sugar bowl for guests drinks and I swear I can smell the sugar if I put some in a brew.

I'm no phyco ologist but you're still grieving, time will heal that if you give it a chance...

 

[8bitkitty]

Having 3 hypos a day is rubbish and it seems evident that you need to reduce your doses or take less metformin. Can you phone your team and discuss a conservative approach to that.? I am sure Dafne will help a lot but you need to do something before then. Agree with the previous poster that the more you brain gets used to less glucose then the greater your tolerance of lower blood sugars that would have given your symptoms of hypo. Btw losing hypo awareness is one of the criteria for getting FSL as is testing more than 8 x per day so I would emphasise this to your consultant at next visit to see if you can save your lovely boyfriend some cash!

Yeah I know I’m on too high of a dose of my insulin but they still wouldn’t change it. The last time I had seen my consultant I wasn’t having as many hypos, maybe 1 a day, it’s only since they changed my metformin to the slow released one that I’ve started getting about 3 a day!
Just waiting on DAFNE and things will get better.
Unfortunately the freestyle libre isn’t on the NHS where I live yet, so even though I meet the criteria for it, I still won’t be able to get it on my prescription.

 

[NicoleC1971]

Yeah I know I’m on too high of a dose of my insulin but they still wouldn’t change it. The last time I had seen my consultant I wasn’t having as many hypos, maybe 1 a day, it’s only since they changed my metformin to the slow released one that I’ve started getting about 3 a day!
Just waiting on DAFNE and things will get better.
Unfortunately the freestyle libre isn’t on the NHS where I live yet, so even though I meet the criteria for it, I still won’t be able to get it on my prescription.

Not sure where you live but your CCG will be making a decision about it soon and then your consultant will be the decision maker. Before I went on DaFne I was already adjusting my dose around different times of the day and times of the month etc. I did not do this very scientifically so still got 'random' results. Hope Dafne helps you get confident and a little more rigorous than I was in the carb: insulin ratios. My pump has made this way easier too!

 

[Jaylee]

I figured out the ratio thing before they really wanted me to, during the "stick it in if you want to live" meeting. It's not exactly rocket science. It doesn't really WORK, of course, but the IDEA is easy enough.

I am not sure if i actually do want to live, though. I am a walking talking artificial pancreas system and I'm not even a very good ones. Joslin is an idiot. The idea that diabetes makes people special is believed by a lot of people on this forum, that much is obvious. Maybe it makes you special Scott. It makes me into a useless loser who lives from test to test and can basically never concentrate on anything properly. It makes me into a total waste of space. I hate being me because of it. If it makes you feel special you must have had a very boring pointless empty life before. I can remember last year, back when I was actually a person, what it was like, some people have clearly forgotten what normal is.

Go on someone, mark this funny or winner or whatever. Ignore the reality, just say something that seems positive, isn't that how we're all supposed to behave.

So, life can sometimes seem like the Alien franchise.

You have your Ripleys who strap a pulse rifle & flamethrower together & get on with it.
(The latest tracking tech comes in handy too.!)


Then there are the "Hudsons."

You can't flush diabetes out the airlock!

 

[NoKindOfSusie]

So, life can sometimes seem like the Alien franchise.

You have your Ripleys who strap a pulse rifle & flamethrower together & get on with it.
(The latest tracking tech comes in handy too.!)


Then there are the "Hudsons."

View attachment 26423


You can't flush diabetes out the airlock!

You do realise that you completely negated what your own point?

I should fight like Ripley in Aliens, except you can't do what Ripley in Aliens did. Well done. I don't think that's what you mean to say, but what you actually said is right because THAT IS THE WHOLE POINT you cannot win, there is no way to fight it, it never sleeps, it never stops messing with you.

I think I can come up with a better James Cameron quote.

I bet you wish you hadn't gone there, now, don't you.

 

[NicoleC1971]

I think you believe we're in The Matrix here on this forum and your endless nihilism (diabetic life is s**t and then you die) is funny but we can't help wanting to cure you of it...So I am sorry for clicking the funny button.

 

[Jaylee]

You do realise that you completely negated what your own point?

I should fight like Ripley in Aliens, except you can't do what Ripley in Aliens did. Well done. I don't think that's what you mean to say, but what you actually said is right because THAT IS THE WHOLE POINT you cannot win, there is no way to fight it, it never sleeps, it never stops messing with you.

I think I can come up with a better James Cameron quote.

I bet you wish you hadn't gone there, now, don't you.

No regrets..

I just see no effort made to capture one of these T-800 babies & reprogram, in an attempt to save little "John Connor..."

 

[Scott-C]

No regrets..

I just see no effort made to capture one of these T-800 babies & reprogram, in an attempt to save little "John Connor..."

Capture one, give it to tim2000s and see if he can make it do hypo alerts.

 

[NoKindOfSusie]

I think you believe we're in The Matrix here on this forum

I think you're a lot of things but I won't mention what they are because it will give the moderators a lot of work.

 

[Jaylee]

I think you're a lot of things but I won't mention what they are because it will give the moderators a lot of work.

.. Or why not touch base with a friend for a night out? It's still early. Let us know how you got on..?

You'd also do me a favour, spending better time with my wife.

 

[NoKindOfSusie]

Or why not touch base with a friend for a night out?

Love to. Should we go for mexican, thai, chinese, indian...

oh no we won't will we.

 

[Jaylee]

Love to. Should we go for mexican, thai, chinese, indian...

oh no we won't will we.

I was thinking more along the lines of a movie..

 

[Rusne]

I was diagnosed with diabetes 5 months ago and part of me wants to go like - no, this disease does not destroy your life, and I dont think my life pre diabetes and now is completely different. I go to gym more for sure, and eat healthier food. I cook a lot more (which i like) and I started baking all kinds of tasty stuff (because I have cravings but I dont eat bought sugarry things so I make my own sugar free). I still do the same work related things.
Yes, I had to learn really a lot of things and it took me a good 2 months to recover from dka and to read books, experiment with food. Yes I do have to think about food and doses a lot but I find once you limit carbs and stick to certain foods it becomes easier and more predictible.

Yet it is almost hard to believe for me all i wrote above, because when I was diagnosed and heard things like "its not so different" or "it is an opportunity to.." or "i am thankful for my diabetes..." I thought it is total BS and I would never feel like this. I guess things can change over time.

But I am really struggling mentaly and I cannot understand why. Does insulin therapy influence your moods? I don't know if I have inner anger because I got ill or if i have these mood swings because of the sugar levels (my levels are in range most time). Mentaly I feel different than before and it is frustrating

 

[Scott-C]

@Rusne , one thing which seems to happen quite often is that newly dx'd attack it head on, read all the books etc. get ratios and the rest of it sorted out, but there's still a kind of novelty about it all in the first year, then the reality that it's for life sinks in and they can become very dispirited, and/or, as you say, experience inner anger. It's like a delayed grieving. Doesn't happen with everyone but it's something to keep an eye on. If it happens, it's generally just a stage, and most people eventually move on to a stage where it's like, yep, got T1, it's for life, whatever.

This might sound a bit new age hippy, but what works for me is to think about it not as an enemy, a war, but as a small part of me has gone wrong, so I need to help it, care for it, like I would do with my nephew. I don't fight it, I cooperate with it. Sure, it's a bit of a mind game, and I do still get narked about it from time to time when it's not playing by the rules, but on the whole, it's a better mindstate than resenting it.

 

[Rusne]

@Rusne , one thing which seems to happen quite often is that newly dx'd attack it head on, read all the books etc. get ratios and the rest of it sorted out, but there's still a kind of novelty about it all in the first year, then the reality that it's for life sinks in and they can become very dispirited, and/or, as you say, experience inner anger. It's like a delayed grieving. Doesn't happen with everyone but it's something to keep an eye on. If it happens, it's generally just a stage, and most people eventually move on to a stage where it's like, yep, got T1, it's for life, whatever.

This might sound a bit new age hippy, but what works for me is to think about it not as an enemy, a war, but as a small part of me has gone wrong, so I need to help it, care for it, like I would do with my nephew. I don't fight it, I cooperate with it. Sure, it's a bit of a mind game, and I do still get narked about it from time to time when it's not playing by the rules, but on the whole, it's a better mindstate than resenting it.

Thanks so much for reply. I think what you described is exactly how it is going for me. The dificult thing is that you cannot 'fight' this disease and win over it, and be strong and things like that. It is just there and will always be so I need to learn to be ok with it. Easier said than done
I just thought that what I really need is a community of ppl with t1 and this forum is great, I am so happy for it. But I would love to go to meeting or something similar with other t1, i think it would be very helpful.
My family and friends are very supportive but there are certain things only ppl with disease can understand

 

[LooperCat]

I go through ups and downs. I’ve been feeling quite positive recently about my future since getting Libre and changing my food, and getting good HbA1c results. But. I had a real slump on Friday and yesterday. There is going to be no respite from it, is there?

We were out in Cardiff yesterday on a May Day workers’ rally, and it was really quite warm and sunny. My sugar levels were all over the place because hot weather and sun really affect me, and I felt rotten - everyone else was just enjoying the sun and speeches, while I was constantly scanning and thinking about my BG. At least I didn’t have to prick my finger each time (I love technology!), but it wasn’t off my mind for more than a few moments.

 

[Rusne]

I go through ups and downs. I’ve been feeling quite positive recently about my future since getting Libre and changing my food, and getting good HbA1c results. But. I had a real slump on Friday and yesterday. There is going to be no respite from it, is there?

We were out in Cardiff yesterday on a May Day workers’ rally, and it was really quite warm and sunny. My sugar levels were all over the place because hot weather and sun really affect me, and I felt rotten - everyone else was just enjoying the sun and speeches, while I was constantly scanning and thinking about my BG. At least I didn’t have to prick my finger each time (I love technology!), but it wasn’t off my mind for more than a few moments.

I can totally relate.. i just had a converstation with my friend and she asked me how am I doing and then said "But after a while all of this (injections/testing) becomes automatic and you dont have to think so much about it, right?"
For me not. Does it become automatic?
I think ppl dont understand how much it is on ones mind all the time. I dont talk about it but its there.

 

[LooperCat]

I can totally relate.. i just had a converstation with my friend and she asked me how am I doing and then said "But after a while all of this (injections/testing) becomes automatic and you dont have to think so much about it, right?"
For me not. Does it become automatic?
I think ppl dont understand how much it is on ones mind all the time. I dont talk about it but its there.

Well, you still have to think about every mouthful, drink, exertion and dose. And it’s hard to be spontaneous with your spouse when you need to check your blood sugar beforehand to make sure you don’t hypo... ​