Hi all
I have Surgically Acquired Type 1 Diabetes and have had since 01.04.15 after a completion Pancreatectomy due to being diagnosed with idiopathic chronic Pancreatitis suddenly in 2008, also having had a Whipples Procedure in 2011 due to 5% necrosis of my pancreas Which I was initially told would/should make things better this did not hence the completion Pancreatectomy.
I'm truly at my wits end my BG levels are all over the place most days in the high 20s and even mid 30s. The minute I do any activity they drop suddenly to 2 and 3 even had a few readings of 1.7 and 1.9. My diabetic specialist nurse and team are brilliant always willing to help in any way even when I'm a mess and stop trying so hard out of sheer frustration most of the time, however in his own words and (not in a bad way) in all the years he's been doing this job I'm the hardest diabetic he has had to deal with, and he feels frustrated so doesn't know how I feel.
Anyhoo A few weeks ago I was asked to start thinking about a pancreas transplant or possibly stem cell treatment as things are so bad right now but luckily it's just thinking at the moment which I'm so glad about as I'm actually not quite able to process this I can't take it all in it's too much for my little brain. I can't do anything or go anywhere without lucozade Haribos glucose tablets and the all important jelly babies in all honesty I've never I test on average daily between 12 and 14 times not because I want to but have to.
I have such a wonderful family they help with the cleaning (ish lol) they don't clean like I do... They do support me so much this is as new to them as me. Can't get a bath clean cook if I'm on my own due to my levels dropping suddenly if I do any sort of activity that requires moving at all.
Just to give an idea...had a bath (not hot water can't have that anymore because my bloods drop) washed my hair
And done the usual wash dried and quick blow dry (can't have hot air have to push the cool button because oh yes bloods drop) BG was 13.4 when I started and by the time I was finished around 45 mins later was 2.9 so lucozade and a small chocolate biscuit had. I'm eating as healthy as I can using the diabetic cookbook on line along with some meals from slimming world. Also have to take Creon due to malabsorption due to firstly missing the pancreatic enzyme that allows my food to digest and even more now I have no Pancreas. Wait it gets better haha....hopefully, yesterday had a CGM fitted was supposed to be the pump but consultant wants me to have this for 5 days to show what I and the diabetic team and my family already know my BGL are not quite right...
So there you go that's me long winded I know and apologise in advance of posting this...think I'm just in need of hearing from someone the same as me or someone with any type of diabetes chatting don't know anyone else even remotely like me.
And I'm not usually this miserable
however I do tend to go on a bit. 
I have Surgically Acquired Type 1 Diabetes and have had since 01.04.15 after a completion Pancreatectomy due to being diagnosed with idiopathic chronic Pancreatitis suddenly in 2008, also having had a Whipples Procedure in 2011 due to 5% necrosis of my pancreas Which I was initially told would/should make things better this did not hence the completion Pancreatectomy.
I'm truly at my wits end my BG levels are all over the place most days in the high 20s and even mid 30s. The minute I do any activity they drop suddenly to 2 and 3 even had a few readings of 1.7 and 1.9. My diabetic specialist nurse and team are brilliant always willing to help in any way even when I'm a mess and stop trying so hard out of sheer frustration most of the time, however in his own words and (not in a bad way) in all the years he's been doing this job I'm the hardest diabetic he has had to deal with, and he feels frustrated so doesn't know how I feel.
Anyhoo A few weeks ago I was asked to start thinking about a pancreas transplant or possibly stem cell treatment as things are so bad right now but luckily it's just thinking at the moment which I'm so glad about as I'm actually not quite able to process this I can't take it all in it's too much for my little brain. I can't do anything or go anywhere without lucozade Haribos glucose tablets and the all important jelly babies in all honesty I've never I test on average daily between 12 and 14 times not because I want to but have to.
I have such a wonderful family they help with the cleaning (ish lol) they don't clean like I do... They do support me so much this is as new to them as me. Can't get a bath clean cook if I'm on my own due to my levels dropping suddenly if I do any sort of activity that requires moving at all.
Just to give an idea...had a bath (not hot water can't have that anymore because my bloods drop) washed my hair
And done the usual wash dried and quick blow dry (can't have hot air have to push the cool button because oh yes bloods drop) BG was 13.4 when I started and by the time I was finished around 45 mins later was 2.9 so lucozade and a small chocolate biscuit had. I'm eating as healthy as I can using the diabetic cookbook on line along with some meals from slimming world. Also have to take Creon due to malabsorption due to firstly missing the pancreatic enzyme that allows my food to digest and even more now I have no Pancreas. Wait it gets better haha....hopefully, yesterday had a CGM fitted was supposed to be the pump but consultant wants me to have this for 5 days to show what I and the diabetic team and my family already know my BGL are not quite right...
So there you go that's me long winded I know and apologise in advance of posting this...think I'm just in need of hearing from someone the same as me or someone with any type of diabetes chatting don't know anyone else even remotely like me.
And I'm not usually this miserable
however I do tend to go on a bit. 
ish to say I've had a insulin pump fitted been a week and a half now and am trilling the freestyle Libre I'm on my way to sort of feeling a little better and am so hoping this is the case and so are my family and diabetic team who have been as frustrated as I have in fact my DSN says he's been doing this job for over twenty years and I am his most difficult patient to date (wow that made me feel better) ha know what he means. It's still very early days and hopefully this works if not I've already been asked to start thinking about 1.a pancreas transplant. 
