Hi guys, new here.
Firstly I just want to say please try and stay with me on this as it might be quite a long post but i really need as much advice as possible as not to sound dramatic but it could literally save my life.
Ok so I am not your regular diabetic. I have something called CFRD which is short for Cystic Fibrosis Related Diabetes. This is basically a type of diabetes that is solely related to people with CF and isn't type 1 or 2 but a mix of both of them. It usually happens after one becomes an adult. For me i was fine until a year ago or so when around 22 years of age and before that I wasn't insulin dependant and was functioning as normal so I could eat and drink whatever I liked.
Now unfortunately I need to inject NovoRapid fast acting insulin with anything i eat or drink to keep my levels in check.
So you are with me so far.....now this is where it gets confusing and very different.
Due to my condition I can't eat like a normal diabetic should or would. I have to adhere to very strict guidelines as I am not in a good place right now health wise and am literally fighting for my life and trying to turn things around as they have taken a dive for the worst very recently.
I have to have a certain amount of calories every day without fail....or I lose weight daily. My weight takes a long time to go up but can drop instantly and i am extremely low weight due to this and this affects my life expectancy massively and has implications on all my other symptoms. The higher my weight the more chance I have getting back on track with all the other parts.
Every day is unique and there is no set schedule for me. In an ideal world every day of mine should be schedules and well regimented and i should be doing X medical treatment and X time and eating lots of small meals at given times throughout the day. Unfortunately due to my health this is not possible and on some days I am only awake a few hours of each day and I have different sleep habits so most days I will go to bed in the morning and wake up in the evening or wake up at midnight and have my first meal when people usually are sleeping. As you can imagine this is very detrimental for me but nothing I can do about it as it all depends on my health and if I have an undisturbed sleep as usually I'm up with some pain/problem or another.
The issue with this is I have to cram as much food down as possible whilst i am awake on those days to try and keep up my intake. On good days where i have a normal wake up time I try to space meals out etc and it's all a little easier but still hard due to all my problems.
The issue I am having is also due to this my diet is very high calorie, also very high carb and high protein too. It cannot be low carb and i also cannot change the staple foods that the meals are based around simply because i get on really well with them and there aren't many alternatives that pack the same amount of calories/fats etc.
Each meal is no less than 120g carbs, sometimes can be as high as 180g ....and i normally have a minimum of three of these a day, sometimes more. Also i take supplement protein/gain shakes too a few times a day which are also high carb usually around 50g which i try and take 2-3 lots of in the day.
^this obviously varies depending how many hours I am awake and what kind of a day I am having but you get the idea. Sometimes i half the big meals so the carb content is less and easier on my stomach and then will add a milkshake with it instead etc but the carb total is always high as you can see.
Injecting insulin with this is a nightmare.
All my foods are generally diabetic no no foods. A lot of the meals are based around white rice. Brown rice doesn't go well with the dishes i have.
Potatoes in different forms are another food that features heavily in my meals.
Flat bread ( nan, chapati, roti etc) made from wholemeal flour.
Lentils, beans.
Pasta
Protein powder Milkshake.
^that pretty much sums up all of my meals in one way or another as all of those feature as the staple in the different dishes.
I have been logging my insulin without fail numerous times a day with the meals and trying to inject differnt amounts but still not having much luck and still not putting weight on. I normally measure 1 hour after meal and 2 hours after meal.
1 hour after a meal the figures are naerly always double figures with the highest I've seen being 18 and the odd exceptions with some under 10 when it's a smaller lower carb meal.
and 2 hour after a meal once again normally double figures low teens 10-13 and with lower carb smaller meals it can be perfectly normal and between 5-8.
I have tried things like injecting at different intervals before starting a meal (15 min before, 10 min before etc) but I can't seem to be able to get it lower and I don't want to inject too much for obvious reasons.
Also when injecting with a the high carb shake, i usually inject at the start but the thign is the shake is finished within one minute and near enough instantly i feel totally off my nut as high as a kite and absolutely out of it for the next hour plus. This also happens with meals and I hate it as I sometimes fall asleep missing medicine and other valuable time. It also stops me putting on weight as when my sugar is high I just lose even more weight and it forces my food to digest super fast without absorbing the nutrients. It's an extremely vicious circle and one that I am trying to break out of.
I was wondering if anyone has any tips on what to do in regards to injecting with those kind of meals and what to do with high carb drinks or any tips and advice anyone can give me.
The milkshake doesn't have any sugar in it (only 1g) but i figured as the carb content is so high it's like downing a bottle of Lucozade in one go. I'm sure there must be people that have sweet juices or fizzy drinks on here and if so how do you manage them.
Or shouldn't I have the milkshake by itself and instead have it with a meal so the insulin covers everything together to avoid the spike it gives?
Or is it just simply that due to the nature of those foods I am eating, no matter how much insulin I inject it will never be able to cover such high carb foods like a normal body would? Is that the case as I really am out of ideas and testing as time is running out for me.
If anyone has made it this far then I thank you for that alone!
I would appreciate any advice or anyone willing to help me make some kind of progress, I have exhausted each possible option now so please don't tell me to see anyone but if we could just focus on the above.
Feel free to ask any questions incase I need to give more detail or help you to understand anything else.
Firstly I just want to say please try and stay with me on this as it might be quite a long post but i really need as much advice as possible as not to sound dramatic but it could literally save my life.
Ok so I am not your regular diabetic. I have something called CFRD which is short for Cystic Fibrosis Related Diabetes. This is basically a type of diabetes that is solely related to people with CF and isn't type 1 or 2 but a mix of both of them. It usually happens after one becomes an adult. For me i was fine until a year ago or so when around 22 years of age and before that I wasn't insulin dependant and was functioning as normal so I could eat and drink whatever I liked.
Now unfortunately I need to inject NovoRapid fast acting insulin with anything i eat or drink to keep my levels in check.
So you are with me so far.....now this is where it gets confusing and very different.
Due to my condition I can't eat like a normal diabetic should or would. I have to adhere to very strict guidelines as I am not in a good place right now health wise and am literally fighting for my life and trying to turn things around as they have taken a dive for the worst very recently.
I have to have a certain amount of calories every day without fail....or I lose weight daily. My weight takes a long time to go up but can drop instantly and i am extremely low weight due to this and this affects my life expectancy massively and has implications on all my other symptoms. The higher my weight the more chance I have getting back on track with all the other parts.
Every day is unique and there is no set schedule for me. In an ideal world every day of mine should be schedules and well regimented and i should be doing X medical treatment and X time and eating lots of small meals at given times throughout the day. Unfortunately due to my health this is not possible and on some days I am only awake a few hours of each day and I have different sleep habits so most days I will go to bed in the morning and wake up in the evening or wake up at midnight and have my first meal when people usually are sleeping. As you can imagine this is very detrimental for me but nothing I can do about it as it all depends on my health and if I have an undisturbed sleep as usually I'm up with some pain/problem or another.
The issue with this is I have to cram as much food down as possible whilst i am awake on those days to try and keep up my intake. On good days where i have a normal wake up time I try to space meals out etc and it's all a little easier but still hard due to all my problems.
The issue I am having is also due to this my diet is very high calorie, also very high carb and high protein too. It cannot be low carb and i also cannot change the staple foods that the meals are based around simply because i get on really well with them and there aren't many alternatives that pack the same amount of calories/fats etc.
Each meal is no less than 120g carbs, sometimes can be as high as 180g ....and i normally have a minimum of three of these a day, sometimes more. Also i take supplement protein/gain shakes too a few times a day which are also high carb usually around 50g which i try and take 2-3 lots of in the day.
^this obviously varies depending how many hours I am awake and what kind of a day I am having but you get the idea. Sometimes i half the big meals so the carb content is less and easier on my stomach and then will add a milkshake with it instead etc but the carb total is always high as you can see.
Injecting insulin with this is a nightmare.
All my foods are generally diabetic no no foods. A lot of the meals are based around white rice. Brown rice doesn't go well with the dishes i have.
Potatoes in different forms are another food that features heavily in my meals.
Flat bread ( nan, chapati, roti etc) made from wholemeal flour.
Lentils, beans.
Pasta
Protein powder Milkshake.
^that pretty much sums up all of my meals in one way or another as all of those feature as the staple in the different dishes.
I have been logging my insulin without fail numerous times a day with the meals and trying to inject differnt amounts but still not having much luck and still not putting weight on. I normally measure 1 hour after meal and 2 hours after meal.
1 hour after a meal the figures are naerly always double figures with the highest I've seen being 18 and the odd exceptions with some under 10 when it's a smaller lower carb meal.
and 2 hour after a meal once again normally double figures low teens 10-13 and with lower carb smaller meals it can be perfectly normal and between 5-8.
I have tried things like injecting at different intervals before starting a meal (15 min before, 10 min before etc) but I can't seem to be able to get it lower and I don't want to inject too much for obvious reasons.
Also when injecting with a the high carb shake, i usually inject at the start but the thign is the shake is finished within one minute and near enough instantly i feel totally off my nut as high as a kite and absolutely out of it for the next hour plus. This also happens with meals and I hate it as I sometimes fall asleep missing medicine and other valuable time. It also stops me putting on weight as when my sugar is high I just lose even more weight and it forces my food to digest super fast without absorbing the nutrients. It's an extremely vicious circle and one that I am trying to break out of.
I was wondering if anyone has any tips on what to do in regards to injecting with those kind of meals and what to do with high carb drinks or any tips and advice anyone can give me.
The milkshake doesn't have any sugar in it (only 1g) but i figured as the carb content is so high it's like downing a bottle of Lucozade in one go. I'm sure there must be people that have sweet juices or fizzy drinks on here and if so how do you manage them.
Or shouldn't I have the milkshake by itself and instead have it with a meal so the insulin covers everything together to avoid the spike it gives?
Or is it just simply that due to the nature of those foods I am eating, no matter how much insulin I inject it will never be able to cover such high carb foods like a normal body would? Is that the case as I really am out of ideas and testing as time is running out for me.
If anyone has made it this far then I thank you for that alone!
I would appreciate any advice or anyone willing to help me make some kind of progress, I have exhausted each possible option now so please don't tell me to see anyone but if we could just focus on the above.
Feel free to ask any questions incase I need to give more detail or help you to understand anything else.
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