I'm Scared and I need help

[SilverDragoness]

My name is Rachel and I'm a type 1 diabetic. I was diagnosed when I was 18 and it's been 5 years. My blood sugars are terrifying. I don't know what to do anymore. I haven't had a good A1C since I've been diagnosed and my last one was 8.9. I'm so scared about what is going to happen to me (having panic disorder and generalized anxiety disorder dont help). I'm at a loss. To me, the best I can describe my struggle is with math. You have elementary math that everyone seems to get, and is easy to understand.... Throw in one variable, "X", and most people can still solve that. Throw in X and Y and things get a little difficult. Try adding Z and A and B.... all those variables and the equation seems impossible. To me those variables are: carbs, fat content, protein...exercise, stress, activity, fear, everything. EVERYTHING changes my blood sugars and I don't know how to even get a grasp on it. I feel like I have all the tools: I have a pump, I have a continuous glucose monitor, and I have a meter. And I feel like I have the knowledge: I can tell you about how many carbs are in just about anything, plus everything I've learned over 5 years but I still can't get it. I don't know what to do, I need someone to talk to me about how they got their sugars under control. I have no idea what is wrong with my ratios. They work sometimes and sometimes they don't. I just don't know how to balance an equation with so many tiny little variables. Anyone that can give me some advice, please please try.

 

[StevieT666]

Hi Rachel, have you spoke to your DSN? It sounds like your in turmoil with all of it and having your panic and anxiety disorder cant be helping. Its different for everyone and what works for one might not work for another. I'm a newbie having only been diagnosed at the start of december last year, however I seem to of got it under control fairly quickly. I have a physical manual job so dont need to inject until 8pm (Lantus) and dont use my Novorapid except on weekends, I'm active all day at work and on weekends I have my kids which keeps me going aswell! What sort of work do you do? What medication are you on? I was shocked when first diagnosed and pretty scared but i've realised that its part of my life now and I have no choice but to get on with it (easy when I have not got panic/anxiety) I dont know what advice I can give you other than to speak with your DSN and tell him/her everything, it may help talking about it and help you feel less stressed? Maybe work out a different dosage/strategy? Good luck.x

 

[zand]

Hi Rachel, welcome to the forum. I'm T2 so I can't help you but I'm tagging some T1s who may be able to advise you. @Dillinger @urbanracer @tim2000s @azure @Spiker @donnellysdogs

 

[catapillar]

Hi Rachel,

I wish I was able to give you reassurance and advice on how to control your blood sugar, but, unfortunately, you have very brilliantly described how I feel about control and I thought it might, in some strange way, help to know you aren't the only one who feels like that.

One of the things I think that makes my blood sugar so difficult is my menstrual cycle. I'm very insulin sensitive when ovulating and much more resistant when I'm pre menstrual. Unfortunately I don't have a regular cycle and quite how much it impacts on me seems to change every month.

Having said that, I am confident that it is possible to control and I am sure that you will get lots of helpful advice from people on here who have got on top of it.

I'm reading Sugar Surfing at the moment and it might be really helpful for you - it's about how to apply all those tools in real life where everything is changing and what worked yesterday might not work today.

Lots of luck x

 

[urbanracer]

My name is Rachel and I'm a type 1 diabetic. I was diagnosed when I was 18 and it's been 5 years. My blood sugars are terrifying. I don't know what to do anymore. I haven't had a good A1C since I've been diagnosed and my last one was 8.9. I'm so scared about what is going to happen to me (having panic disorder and generalized anxiety disorder dont help). I'm at a loss. To me, the best I can describe my struggle is with math. You have elementary math that everyone seems to get, and is easy to understand.... Throw in one variable, "X", and most people can still solve that. Throw in X and Y and things get a little difficult. Try adding Z and A and B.... all those variables and the equation seems impossible. To me those variables are: carbs, fat content, protein...exercise, stress, activity, fear, everything. EVERYTHING changes my blood sugars and I don't know how to even get a grasp on it. I feel like I have all the tools: I have a pump, I have a continuous glucose monitor, and I have a meter. And I feel like I have the knowledge: I can tell you about how many carbs are in just about anything, plus everything I've learned over 5 years but I still can't get it. I don't know what to do, I need someone to talk to me about how they got their sugars under control. I have no idea what is wrong with my ratios. They work sometimes and sometimes they don't. I just don't know how to balance an equation with so many tiny little variables. Anyone that can give me some advice, please please try.

Hi Rachel,

I inject, I don't pump, so I'm not sure how relevant my knowledge will be. As far as arithmetic goes, I generally only worry about carbs and whether I'm likely to be doing excercise of any note. I tend to let the fat and proteins take care of themselves, this keeps things simple for me but it may not be an appropriate approach for you. I'm sure some other pumpers will advise on this soon.

Are you trying to cope with high carb meals or have you reduced your carb intake?

You shouldn't be afraid of going back to the doctor or hospital and asking for assistance, that's what they're there for and I'm sure they would be glad to help someone who genuinely needs guidance. (Let's face it, most of them aren't working in the care sector for the money).

Hope you get this sorted soon.

 

[himtoo]

hi Rachel
after reading your post my immediate thought is that you have yourself pretty wound up so you could be compounding everything with worry and stress.( which will raise BG's )


the very first thing i would do is revisit basal testing -- link here http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

are you able to get to your consultant and get signed off work for a few weeks and try and get back to basics in your whole approach.
for me this would be keeping to an exact routine doing the same things every day and obviously you have good back up with the cgm . this might enable you to see if there are any patterns and see what things work better for you.

in this routine it means even eating the exact same things every day , getting up the same time , etc.

i know it is really difficult but TRY and slow down and just think of today and trying to get 1 thing right and build slowly ( and don't beat yourself up over the things that you don't get right)

keep posting too !!

 

[AtkinsMo]

Hi Rachel. I read your post, and even though I don't have relevant experience, personally, I just felt that I had to reply to you. My father was born in 1922 and was diagnosed with diabetes in his teens. In those days, insulin had just been discovered - and he wast instructed how to follow a strict diet. When my brother became diabetic at 11, when I was a very small child, the whole household converted to this diabetic diet. I remember all my childhood, foods were routinely described as 'reds, greens and blacks' some he could never eat, some he had to eat in strict moderation, some he could eat freely. Now, with the benefit of hindsight and going on a Low Carb diet for my own health, I can see the similarities with the way that I ate at home as a child. If you adjust your diet such that your carb levels are very low and consistent, you must achieve improved blood glucose control, it's only common sense.
My father stayed on the diet he had been taught as a young man. He would have nothing to do with the changing advice that he was getting from the clinic, he stayed with what he knew and knew worked for him. Later in life, he fully engaged with his meter.
Until he eventually went into a residential home in his 80s, he had not a hint of any diabetic side effects. Sadly, by the time he died, he had 'diabetic feet' problems with his vision etc etc. his decline was rapid and startling when his blood sugars were no longer tightly controlled.
My brother changed to the diet that is promoted by the BDA and suchlike, where every meal is based on slow release carbs, he has not fared nearly so well.
When my blood glucose levels became high enough to cause concern, I immediately bought the book by Richard Bernstein, who is truly inspirational. He has a series of you tube videos that are completely free, called the Diabetes University. You will need to work with your diabetic nurse, if you strictly restrict carbohydrates your insulin requirement will go down rapidly. I think that this could be a solution for you and it could give you more control in your life, and more confidence in the future. The Real Meal Revolution food lists are exactly like the food lists my father worked with, an excellent resource.
http://realmealrevolution.com/real-food-lists

 

[azure]

Hi Rachel,

Sorry you're feeling so stressed. Diabetes control is hard work. Don't think about all the possible variables else it'll stress you more. Concentrate on the basics - that's my tip. It sounds like you have a lot of knowledge about things like carb counting and ratios, and that's really good

The first thing to check is that your basal rate is ok as that's the foundation on which you build. Once that's ok, you can then build your 'house' of boluses.

If you use a visual app to count carbs, I recommend using weight instead. There's less margin for error. So if you're at home, don't look at a plate of pasta and guess the carbs - weigh it, so you're sure. That will then remove one variable.

While you're improving control, test lots and lots. Test two hours after your meal and use a correction dose if necessary. That way you'll bring your sugars down and they'll only have been high for a short time

It may also be useful to eat 'safe' meals that you know work while you're checking your ratios - again, removing a possible variable.

Ask for any help and support you need We all know that control is far from easy. You sound like you have all the tools you need, so I'm sure you can get your HbA1C down

 

[Aargh!_]

Hi Rachel,
You're possibly struggling because you are still in your teens. Don't worry too much about everything. There are a lot of really tasty low carb. recipes on this site that may help with keeping your blood sugars a little lower. Less carb = lower blood sugars and less insulin. Work on one thing at a time. I've had diabetes for 49 years, I have no complications, which in fairness may be down to my individual genetics but I can eat the same food, have the same routine daily and my blood sugars are never and have never been stable. They can be 29 one day and 2.9 the next - I'm termed a brittle diabetic. Trust me, speak with your diabetic nursing team. I pester mine whenever I need to and they're always really supportive. Don't try and tackle everything at once - Life is about moderation. If you are doing the best you can, and it isn't working, you can't do more than that. Be honest with yourself and your diabetes team and together you'll see improvements Don't forget even half a per cent
lower in your HBA1C can have huge benefits. Keep with it I'm sure you'll win through

 

[tim2000s]

Hi @SilverDragoness, the first thing to say is to quote from H2G2 and come out with "Don't Panic!". In T1, things change and it can be confusing and difficult. The advice you've been given here is all really helpful and good.

I've found that when going through difficult patches, the following helps me to understand what's going on: http://crick-tech-munch.blogspot.com/2015/11/the-3rs-record-review-react.html

The most important thing is to focus on the day to day bits. As you do that and make small improvements there, the bigger changes tend to come of their own accord. As it stands, 8.9% isn't a disastrous Hba1C and focussing on bringing down your blood glucose little by little will see the changes inherent.

Once you've started doing the 3Rs, you can start to hopefully see some patterns, and most t1s do a number of things in response. I've listed those I could think of here: http://crick-tech-munch.blogspot.com/2015/11/the-3rs-technique-what-to-do-when.html

Basically, it all comes down to going back to basics, and trying to make as few changes as possible so that little by little you can build up a picture of what's going on.

If you don't have one, and can afford it, the freestyle Libre is enormously helpful in understanding how your levels change with regard to your inputs and I'd highly recommend it if you can.

Good luck. We are here to help as you need us!

 

[Lynz84]

Hi Rachel.

Poor you being so afraid!! First thing I would say is to get your anxiety under control. I also suffer GAD and when it kicks in, the sugars rise and by goodness its tough to be stable! I focus on carb counting and try to eat less fat and that helps me. Diabetes uk have a great section on carb counting. Also, a book called "Think like a pancreas" by gary scheiner is a fabulous wee book of knowledge that takes you through everything! Once you make changes, its not going to be an overnight success, it can take days and sometimes weeks to get a handle on things. Youre doing a great job but try not to get so anxious. Things will get better ☺

 

[cazzy1968]

I have been on low carb high fat for about 6 weeks. 3 months ago I was 105 mmol and told I would need to start injecting insulin. I was a rubbish diabetic and ate what I wanted when I wanted. By being more careful and keeping carbs low my blood result has come back and shown 47 mmol just by cutting out the **** and watching carb intake. It is hard and I have days I struggle but never dreamed I could get it down so much. Good luck x

 

[YankeeBeatlesBabe1964]

I love all you givers! All I can say is..This disease sucks for control freaks! Rachel, I hope you can find a happy balance of good stress and flat out peace! Good luck from the USA and Bless your heart!

 

[Juicyj]

Ah hun just read your post, I feel for you, as said above, it would help you massively to try and relax about this, stress and anxiety will push your levels higher, so try and find some peace. It doesn't have to be complicated our little tools can do the maths for us, all we need to be aware of is how many carbs we are eating. If you can do some basal testing as suggested above it will help you to check your levels are ok. Try and simplify your diet for a few days also, eat regular amounts and types of food to chart how it affects your BG levels. I would also talk to your DSN, you need to express your fears to someone who knows you and I am absolutely sure they will help you too