New Type 1 and scared.

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Hi Andrew

Another long term T1'er (23 years) with all toes etc counted for, and hubby is also a member of the club 33 years and doing fine..

Bit of a shock being told you'll diabetic, I had a double whammy, One phone from doc, you'll diabetic and pregnant😱 and a bit like you no history of diabetes in the family, still isn't and I'm a great-great Aunty now! Oh me and my twin sister are the the babies of our family, youngest 2 of 9 thought I'd better explain before you started to think I was prehistoric😱 But I'm getting my Grandma title near the end of September when my first Grandchild is born.

All the emotions you are feeling are quite normal as coming to terms with our diagnoses is akin to going through the the 5 stages of grief... Sinking in of the diagnoses, morning for our lost lifestyle's adjusting to our new lifestyle, asking 'why me' and replanning our future aspiration's etc... As with grief no particular order and no specified time to go through each stage!

But you've found a good forum, a place where we all help with hints, tips and explanations, and what works with us, more than ready to listen when days seem gloomy and full of despair and all you want to do is rant away or share a concern without worrying the wife...

P.S

Can I ask, did you manage not to swear when shown how to do your injection and the nurse said, go on get on with it?

As I still remember my first injection, in those days it was disposable syringes and you had to draw up your insulin from 2 vials (quick and background insulin), I was admitted into hospital to be started on insulin anti-natal ward, and fortunately one of the Midwife's was a T1... She talked me through drawing up the insulin as she draw up her own injection, showed me how to inject, then said now do yours😱

I managed a shocked and stuttered trying not to swear'You've got to be Joking, I ain't no nurse'!
 
everydayupsanddowns said:
Slightly surprised that you mention Insulatard twice a day as a T1 - did your team give any reason why they chose that rather than one of the mixeds? (though as others have said - as T1 you'd really want to be on MDI for added flexibility and more accurate control)
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Thank you all so much for your help. It is helping me so much. You are really all very special people to offer this support.

Re insulatard. They have told me they want to ease me into the use of insulin so that I get my dosage correct and get me used to using it. They said they would not want me to go onto MID until i had got used to taking insulin. I guess they are trying to easy me into it and get me used to the injections.

I want to use MDI so will be pushing for this as soon as they will let me. I did ask about the pumps but they said it would be unlikely I would get one because I need to have special circumstances and they are expensive.
 
andrew1974 said:
Re insulatard. They have told me they want to ease me into the use of insulin so that I get my dosage correct and get me used to using it. They said they would not want me to go onto MID until i had got used to taking insulin. I guess they are trying to easy me into it and get me used to the injections.

I want to use MDI so will be pushing for this as soon as they will let me. I did ask about the pumps but they said it would be unlikely I would get one because I need to have special circumstances and they are expensive.
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Who is it you are seeing? Your GP or a specialist hospital clinic?

It's not unusual for T1s to be put on twice a day to get used to the idea of taking insulin, but insulatard is not a usual choice for that therapy as far as I'm aware. Usually a 'mixed' insulin is prescribed which has a proportion of rapid acting (to deal with carbs eaten) and a proportion of slow acting (to deal with glucose output from the liver).

Insulatard is a medium-long acting with an onset of perhaps an hour, a peak between 1hrs and 12hrs then a fade up to perhaps 18-24hrs.

Not saying your team have got it wrong, just never come across that as an approach for a T1 before and was interested in the thinking behind it.
 
everydayupsanddowns said:
Who is it you are seeing? Your GP or a specialist hospital clinic?

It's not unusual for T1s to be put on twice a day to get used to the idea of taking insulin, but insulatard is not a usual choice for that therapy as far as I'm aware. Usually a 'mixed' insulin is prescribed which has a proportion of rapid acting (to deal with carbs eaten) and a proportion of slow acting (to deal with glucose output from the liver).

Insulatard is a medium-long acting with an onset of perhaps an hour, a peak between 1hrs and 12hrs then a fade up to perhaps 18-24hrs.

Not saying your team have got it wrong, just never come across that as an approach for a T1 before and was interested in the thinking behind it.
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I don't know why they have put me on this one. Maybe because of the high ketones. They have taken my bloods to check that I am definitely a type 1 but they have not confirmed yet. They suspect I am because of the sudden onset and the fact I am fit and healthy otherwise. They said it could take 6 weeks to confirm the blood tests. I am seeing the diabetic nurse at the Oxford diabetic clinic
 
Ah OK, guess that must be GAD/c-peptide tests.

Sounds like they are on the case. Hope your levels settle gently over the next few weeks. Are you testing/recording your own Blood Glucose levels? Would be worth noting what tou are eating (approx estimate of grams of carbs) too - this will give your nurse very useful information to go on.
 
I had a better day yesterday but got an unexpected result for my before evening meal test. I had a baguette for lunch with tuna at about 1 pm and then did not eat until near 7pm which is the time I took the test. The reading was 3.9 which is the lowest I had been since I started looking at the Gloucouse. I felt fine and ate a roast dinner after and the reading went up to 7.3. This low result scared me because I thought I might have gone hypo and I was nervous about going to bed in case anything happened in my sleep. I have slept ok but now awake at 5pm feeling negative about the future again.

I was asked to take 9 units twice a day yesterday instead of 8 twice a day. However when they realised my low reading they said take 8 again in the evening. I feel scared now that i will yo yo and never get control.

Would a pump be better and how do you get these. Do the Nhs supply these or do you buy privately. If you do buy privately how much do they cost and do you you still need to buy insulin etc. do you also get guidance on how to use them.
 
Hi Andrew

I understand your concerns, but please try not to panic. Living with D is a marathon, not a sprint and you are still jostling at the starting line. You need to take some time to get used to living with the condition, and begin to learn how you and it get along together.

Right now, in my opinion a pump would not be appropriate for you, because you need to learn a number of management techniques to use one effectively - without them it is just a (very) expensive piece of plastic. That's not to say it won't be right for you at some stage, but right now you don't even know how much residual pancreas action (sometimes called the honeymoon period) you still have.

First thing is to wait for those tests to come back - then you will have a definitive answer on type.
A move to basal:bolus (Multiple Daily Injections) would help you balance insulin with food
Some sort of course/education about carb counting will allow you to adjust an manage your doses with the support of your team
If you still have difficulty achieving the target level of control when using these techniques (and the most modern insulins) then you may be considered for pump therapy

It probably seems very frustrating - but you are only a few weeks in - you have many happy, healthy diabetic years ahead of you 🙂

Just take it steady and you'll get there
 
Just {{{Hugs}}} Andrew.

Let's consider your dinner last night .... I assume it was a normal roast with all the trimmings including roast potatoes and gravy made with Bisto granules for instance, or even in the meat tin with the residual fat and all the scruchy bits off the meat. And possibly even a Yoorkshire pud.

All these things are cooked in or contain, fat. (read what it says on a Bisto tub if you don't believe me - Oxo granules have a lot less fat though) What does fat do? - it slows down the ingestion by the body of the carbohydrate in the meal (and the protein but we don't need to consider that in this case) so that means a meal containing fat doesn't usually shoot your BG up as high as it would if eg the spuds weren't roasted and weren't mashed with butter, and the meat was grilled instead of roast and you didn't have Yorkshires and you didn't have gravy.

That means the 7.3 reading would go on for quite a bit longer than if you'd say shot up to 9 after the meal and then come down again before bed. With a fatty meal it will gradually go up, achieve a long medium 'high' and then slowly come down again but not diastrously because by that stage the 'fact acting' part of your insulin will be wearing off - generally takes 4 hours, maybe 5 hours, to tail off completely. Then all you are left with is the slower insulin working - and we all need that just to keep our hearts beating our lungs breathing, our digestive systems doing their bit etc etc.

There is a lot to learn Andrew and you can't do it in a matter of weeks. I've had D for 40 years and you know what? - I still reckon I learn summat new nearly every single day - thanks to forums like this one.

Don't try to run before you can walk, my boy. Take baby steps, you'll get there quicker, just like when you walk up a hill. You'll get to the top still able the breathe properly and be able to relax and just enjoy the view !
 
I know this is going to take a while but I am scared that if I don't get it right quickly then I will suffer lots of problem very soon.

I am confused with the fat thing. Should I not be trying to get the fat out of my diet to avoid heart problems.
 
As to pumps..

They are POM item, so even if you privately funded you would need a prescription to obtain one, they cost around ?3000 to buy the pump, which will come with a 4 year warranty, then for the consumables you looking at ?100-?150 a month!

Theoretically as they are 'just' a delivery system there isn't a reason why they can't be used from diagnoses.... But a pump will only ever be as good as the user using them..

If the user doesn't know what data or how to collect the data or interpret all this, it becomes as useful as an Iphone without a sim card! Even when you know all this, setting them up and fine tuning is quite a learning curve..

Problem with diabetes, give you all the information you need all at one go, then you suffer information overload and learn nothing... As you need to build up the basic's then this enables you to expand outwards... Without understanding the basic's you can't expand outwards..

And in reality, yes during the basic learning process the body does take a battering, but the body is pretty forgiven and won't hold it against you for ever... It will only hold it against you if, you fail to learn to take control over a long period of time, then it generally gives you warning or two to get you to change your ways, and start controlling again..
 
andrew1974 said:
I know this is going to take a while but I am scared that if I don't get it right quickly then I will suffer lots of problem very soon.

I am confused with the fat thing. Should I not be trying to get the fat out of my diet to avoid heart problems.
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Nasty complications typically take years to develop (more problematic for t2s who may have had elevated sugar levels for years before diagnosis). The very best approach (from what I've read) is a steady improvement over weeks/months.

As to fat in the diet, you will need to come to your own conclusions really as to how important low fat is in your case (many things with D are frustratingly individual). The official line is that people with diabetes should follow a low fat approach to healthy eating, managing/moderating their carb intake to help BG levels. Diabetics have a higher likelihood of CVD/CHD and are set tighter targets for cholesterol (for example). There are research arguments for and against this approach so you'll have to reach your own conclusions with the help of your clinic/team who know your history and individual case.
 
andrew1974 said:
...I am confused with the fat thing. Should I not be trying to get the fat out of my diet to avoid heart problems.
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Also, remember that not all fats are equal!

It's worth removing saturated fats from your diet.

But that doesn't mean that you need to cut all fats from your diet. There isn't anything wrong with mono/poly-unsaturated fats and some are actually essential oils which you need.
 
Hi Andrew, I have not been on the forum for a few days and have been reading through all the posts. My daughter was diagnosed type 1 last October and I can sympathise with how you are feeling right now. It was really like a period of mourning for both my daughter and I and in many ways we are still adjusting now. Everybody on here is right though. Too much info at the start and too high expectations are not a good thing. I am only realising now, as our nurse is gradually changing targets and tightening things up a bit, that she was breaking us in gently to give us a chance to get used to the whole thing. That was definitely the right approach as we would have been completely overwhelmed otherwise. My daughter, who is now 12, is coping well 7 months on, but we still hit unexplained highs and lows and I am coming to realise that this is something that is actually quite normal. What has changed is that we are getting more confident in dealing with them. My daughter still plays football, does athletics, goes to sleepovers, in fact does all that she did before she was diabetic, it just needs a bit more thought and planning.

I suppose what I am trying to say is go easy on yourself and take your time. It will get easier and it doesn't need to stop you doing anything. The people on this forum are magnificent (as you have already discovered) and will be a huge source of comfort and advice for you as they have been to me.

Keep your chin up!
 
Just reading this reminds me so much of me at the start, I was devastated. I couldn't think straight and process it at all.

It was only November last year I was diagnosed, and like you much of my thoughts were about my children - I have a son who is nearly 6 and a daughter who is 2.

It's a hard thing to be dealt, there is not getting away from that because every day you must look after it - but you will get there I promise. I am still learning loads myself all the time, and as frustrating as it can be, I also actually find it quite interesting, in a weird way. I just wish it wasn't me it was happening to 🙄

I think the quicker you can get onto MDI the better, than in itself will help you a great deal.

There's lots of conflicting advice about fat but the basic principles are the same for a diabetic as a non-diabetic - healthy diet in moderation!!! Unfortunately it's not always so easy to follow but you will get there once you start to learn how different foods affect you.

You'll be ok 🙂
 
Andrew
welcome to Diabetes 🙂 i am 39 and have been type 1 for 25 years. Once you have got to grips with the condition it just means making a few adjustments to your life such as getting a man bag to carry all your needles and blood testing kits etc, but overall i live life to the full and live a normal life..
i can understand completely how you feel, one bit of advice is, talk about how you feel with your family, its new to you, but its also new to them
good luck]
Mat
 
Hi Andrew

I ws diagnosed aged 27 (36 now) with type 1 after never really being ill in my life and like you it was a total shock. I have no family history and knew very little about it.

You said you want someone to tell you that if you look afer yourself all will be fine and all that - well, it will actually!

I have lived with it fine, done loads of sporting events that I probably wouldn't have if I didn't have the challenge of diabetes and lived just as fine as I did before but, having said that, it does involve some hard work on your part.

You must seek help from the professionals, read up and learn as much as you can and then you can live a healthy life with your family well into old age. I recently wnt to a type 1 info group and there were loads of oldies there who had grown up kids, good jobs and apart from the diabetes were totally normal and healthy.

Don't panic - this is a largely manageable condition and although hard work it does not ruin your life. Although i don't blame you for beng in a state of shock and fear and for feeling hard done to because you have lived healthily etc.

I am curently pregnant wth my first child and for the first time ever have realised that diabetes actually has a massive effect in my life (not in a good wa of course) because up until now it hasn't had. I think apart from the pregnancy being such hard work to manage at the moment, for the most part you can carry on regardless.

So your wife is pregnant and I am pregnant (with type 1) and we will be here to see them grow up and it never crossed my mind that I wouldn't and hopefully when you have had time to compute and see how it is to live with, it won't cross yours either.

Good luck Andrew and work hard but please don't think you have been handed a death sentence

Ruth
 
Thank you all so much for the replies. I keep returning to these comments when I get down to give me courage. They do help so much.

And Ruthie. I wish you all the best for the pregancy and birth. It is a magical moment when it happens
 
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