Hello

[NoKindOfSusie]

Hi there

I am the total idiot mentioned in a thread a few weeks ago as "Susie." That is not my name but I will be hanging on to it because I would rather not have this all become public. I was diagnosed with type 1 diabetes just over 3 weeks ago basically having been taken to hospital on the advice of people from this forum who have also offered some fantastic support too, I am very grateful but I am aware of taking up their time and it was suggested that I should sign up here. Hopefully I can avoid whining too much but at 24 it is not very nice news to get, when I had always been quite keen on staying in good health, eating right and particularly I always loved to run which I basically can't really do any more.

To try to make this constructive, I am starting to wonder about some things I have been told and thought it might be worth asking more generally to get an overall view. I am sorry if it isn't allowed to discuss numbers here, I know people are cautious about it, so I'll try to be as general as I can.

First, I was told to aim for a set of blood glucose numbers which people have told me are basically impossible. The thing is I am not used to ignoring the advice of doctors and I spent 2 weeks in a state of total panic that I was damaging my body every time I got a reading outside the range they gave, the long term outcome of this situation is very very frightening and I was having all kinds of horrible thoughts. It seems really unfair that they tell people that they should be between those numbers when you really can't be and even people without diabetes get up to 10 for short periods.

Second, I have basically been feeling really unwell for about six weeks, including two weeks pre diagnosis when I felt constantly exhausted and peeing all the time, and almost four weeks since when I have basically felt like I had flu. I have been told that this is due to having run very high blood glucose numbers for a long time and that it will fade out in "a couple of weeks" but it is nearly a month and I still feel bad at the lower end of the ideal range they told me to aim for. It's not as bad as it was but one of the things which is making this hard to deal with is that not only do I know I am sick, but I feel sick a lot of the time too. I have managed to work a few days but I have to be able to get back to work as much as I can both for financial and career reasons.

Also I keep waking up at higher numbers than I should be. Having set alarms to wake up earlier I have pretty much established that this is a gradual rise through the night, not the fall from an even higher peak, and without going into details I suspect that a change to the treatment regime might help, but the clinic people don't like the idea. This is confusing because I am suggesting changes which might help me stay in the range they specify (which we think is impossible, anyway) but they won't let me try it even though I'm drifting out of their range. This is worrying because I am still not sure if I'm damaging myself every time I go out of their basically impossible range, or if it's OK for short periods, or whatever else might be the case.

I could go on all day but overall it is hard to keep a positive outlook, I am worried it is making me angry and snappy at people and it's hard not to envy people who don't have to deal with all this and I don't want to be that sort of person. Of the people I have spoken to who have type 1 they are mainly people who have had it from childhood and don't really understand the loss of freedom and I don't have a lot in common with them. It's getting hard to keep testing and testing and testing and I'm only a few weeks in, which is pretty short to start burning out already. I have asked these questions of several people but it would be nice to get other opinions too, no offence to anyone but I do not want to make decisions about my health based on what someone on the internet told me, I'd rather get the opinion of a dozen people on the internet!

This is a huge essay and I am sorry but here it is!

NoKindOfSusie

 

[catapillar]

1) why can't you run? It's perfectly possible to run with type 1 diabetes.

2) target blood sugars are just that, a target or an aim, not a cage. No-one is 100% within the targets (even non diabetics) and it is possible to be 30% over target and still have a hba1c that is in target and therefore alleviating the risk of diabetic complications.

3) at only 3 weeks diagnosed it would be a little unusual to have strict targets. It perfectly fine to discuss number. What targets have you been set and what numbers are you seeing that are making you so uncomfortable? Usually newly diagnosed people are slowly stepped down to target as they will have been sitting at numbers very high, like over 30, for a few weeks prior to diagnosis. Your body gets used to the high bold sugars and thinks that normal blood sugars are too low, causing false hypos, so it is stepped down to allow an adjustment down to normal.

4) did you have dka at diagnosis? That's really significant and can take along time to recover from. It you have immediately aimed for tight contol then the false hypos are probably why you don't like being at the lower end of the target blood sugars.

5) what is your treatment regiem? What changes are you suggesting to it? Have you read up on dawn phenomeno and basal testing?

6) I was diagnosed at 25 and certainly found I was very aware of the difference, of what I was loosing. A lot of people mention that diagnosis with a chronic condition can have a grieving effect. Some diabetes clinics will have a psychologist to refer you to to help deal with this

7) for testing testing testing you might want to look into freestyle libre, although it may not work with finances.

8) have a look at getting a copy of "think like a pancreas" it's a good book to help understand the basics of managing type 1

 

[katmcd]

Hi not-Suzie! You are still early days, don't feel the need to rush into everything. 3 weeks can feel like ages but really in the grand scheme of things, small beans. Don't let that frustrate you.

I was diagnosed in February at 30 years old. I'm just getting back to managing my old exercise regime fully as I now just have learnt (trial and error most of the time) how to do things differently. The forum has been a wonderful source of help and a friendly ear even with the daftest of questions. Sometimes it is the most understanding place to have a rant on. Snap at us because we have all been there in our own individual way.

If testing lots is exhausting but not testing is worrying, have a look at either Freestyle Libre or Dexcom monitoring systems. I funded mine 6 weeks after diagnosis and wouldn't be without. It also has helped with exercise.

And I totally second getting g Think Like A Pancreas. It's a great book to have and answers a lot of questions you might have.

Sorry for my ramble but I hope you start to feel more like your old self soon. Kat

 

[NoKindOfSusie]

Sorry but I need to rush into everything because I need to be earning a living and frankly because if I don't get a grip on this situation pretty quickly it will drive me crazy. It is already driving me crazy and the idea of having to keep this up forever is horrible.

To answer the questions, I can't run because if I try to run, I end up shivering and sweating even with numbers well over 4. I just about made it to the nearest subway, I did not eat a sandwich, I had a salad, and it is only about 1km away at about half normal speed and had to sit there for a while after eating before basically walking home. The numbers I was given were to be between 5 and 7, I have not eaten anything with more than trace carbohydrate ever since and failed to maintain that anyway, the problem being that I have no idea whether I am doing well or badly. The highest number I have ever seen is 9.2 right after waking up (what the hell are you supposed to do about that) and the lowest is 3.8 at which point I was really shivering and felt like ****. Yes I had ketoacidosis at diagnosis and was told to expect to feel bad for a couple of weeks, it's been nearly a month and I still can't even walk to the shops and back without almost guaranteed feeling bad.

There was no mention of deliberately going higher than 7 in order not to feel bad, non medical people have said that but medical people have not, and I was happy with that. If it's a matter of having awful things happen to me or maintaining numbers which make me feel uncomfortable, well I will take 20 years of feeling borderline hypo in order to avoid going blind thanks.

Treatment is 16 units lantus in the morning, novorapid before meals and I am avoiding carbohydrate other than trace amounts so it is very difficult because you can't exactly do a quarter of a unit. I have read about various things that can cause high numbers around waking up but the most obvious thing to me is that the lantus is running out and I could maybe try doing it in two stages morning and evening which I understand is a fairly normal thing to do. The clinic are totally useless and won't even answer basic questions, let alone give me the go ahead to try this so I don't know if it's crazy to just try it one day, obviously with lots and lots of testing to make sure things aren't going wrong.

Honestly if I had to have this happen, I would choose to get it when I was five years old or whenever people tend to get it, because the contrast is just really hard to deal with, I hate being dependent on things and the idea of being trapped somewhere without access to all the stuff is really scary. I see stories about people getting burned out and just throwing all their stuff away and ending up in hospital with huge numbers. The result is scary but what really scares me is the fact that people still feel like that after years and years, there has to be some way for this to start feeling normal surely? Right now I hate feeling hungry because food is out to get me, I hate sleeping because I don't trust that I'll wake up again and I hate going out because if I move around too much I feel terrible. If people go years with all that I don't know how they deal with it.

One thing I would say is that anyone who even suspects they are in this position needs to see a doctor IMMEDIATELY. I was an idiot, I can't say I was in denial because I didn't really think I had diabetes but I could have been in that situation for far less time and I would have lost far less physical ability.

 

[Ixarix]

Hi not-Suzie! You are still early days, don't feel the need to rush into everything. 3 weeks can feel like ages but really in the grand scheme of things, small beans. Don't let that frustrate you.

I was diagnosed in February at 30 years old. I'm just getting back to managing my old exercise regime fully as I now just have learnt (trial and error most of the time) how to do things differently. The forum has been a wonderful source of help and a friendly ear even with the daftest of questions. Sometimes it is the most understanding place to have a rant on. Snap at us because we have all been there in our own individual way.

If testing lots is exhausting but not testing is worrying, have a look at either Freestyle Libre or Dexcom monitoring systems. I funded mine 6 weeks after diagnosis and wouldn't be without. It also has helped with exercise.

And I totally second getting g Think Like A Pancreas. It's a great book to have and answers a lot of questions you might have.

Sorry for my ramble but I hope you start to feel more like your old self soon. Kat

Libre is just being made available here in Canada. I was wondering if there was a period of time you needed to be diabetic before it was appropriate to get one. But it sounds like you got one six weeks after being diagnosed, so I maybe able to get one soon than. They're on pre-order here.

 

[NoCrbs4Me]

Libre is just being made available here in Canada. I was wondering if there was a period of time you needed to be diabetic before it was appropriate to get one. But it sounds like you got one six weeks after being diagnosed, so I maybe able to get one soon than. They're on pre-order here.

I’m in Canada. I ordered a Freestyle Libre on Sunday and it arrived today.

 

[Ixarix]

I’m in Canada. I ordered a Freestyle Libre on Sunday and it arrived today.

Cool. Nice to meet a fellow Canadian on here. This is where I heard about the Libre. I would do anything until I talk to my endocrinologist next week. But if you could let me know how you like it that would be great. Might order one for my birthday. Would make testing and tracking things much easier.

 

[Hotpepper20000]

Another Canadian here.
I'm just looking to see if my insurance covers some of the cost if I get my doctor to write a prescription. Long shot but otherwise I'll self fund.

 

[NoCrbs4Me]

Cool. Nice to meet a fellow Canadian on here. This is where I heard about the Libre. I would do anything until I talk to my endocrinologist next week. But if you could let me know how you like it that would be great. Might order one for my birthday. Would make testing and tracking things much easier.

Hey man! There are Freestyle Libre ads on tv here. I saw one during a Yankees playoff game. I'd bought sensors off Ebay, but they were rather expensive. They are only $89 each direct from Abbott.
It works great...unless you get a bad sensor, which is common. However, if you get a bad sensor, Abbot should send you a new one.
https://myfreestyle.ca/en/

 

[Ixarix]

Another Canadian here.
I'm just looking to see if my insurance covers some of the cost if I get my doctor to write a prescription. Long shot but otherwise I'll self fund.

Nice to meet you, I might self fund too.

 

[NoCrbs4Me]

Another Canadian here.
I'm just looking to see if my insurance covers some of the cost if I get my doctor to write a prescription. Long shot but otherwise I'll self fund.

On the ordering web site it says that only two insurance providers cover it: Industrial Alliance and Manulife. If you have one of these and can get a prescription, I'm sure you'll have it covered. Otherwise, it's worth the cost.

 

[Ixarix]

Hey man! There are Freestyle Libre ads on tv here. I saw one during a Yankees playoff game. I'd bought sensors off Ebay, but they were rather expensive. They are only $89 each direct from Abbott.
It works great...unless you get a bad sensor, which is common. However, if you get a bad sensor, Abbot should send you a new one.
https://myfreestyle.ca/en/

My mom saw it. I started reading about Libre on this forum. I'm newly diagnosed too, and the prospect of not having to poke my fingers as much has me excited. Abbot is selling their starter kit for about $227 here, Imight be to new to the party to be eligible. But it would make monitoring for nighttime hypos much easier.

 

[NoCrbs4Me]

My mom saw it. I started reading about Libre on this forum. I'm newly diagnosed too, and the prospect of not having to poke my fingers as much has me excited. Abbot is selling their starter kit for about $227 here, Imight be to new to the party to be eligible. But it would make monitoring for nighttime hypos much easier.

unfortunately there’s no alarm if you have a hypo while you’re sleeping, but you can see when you wake up and download the data what your levels were.

 

[mytype1.life]

Hi @NoKindOfSusie,

Welcome to the forum. I'm so pleased you are getting support and treatment. Here are a few of my thoughts and tips..

1) Keep it real!
I often leave my hospital appointments demotivated and down. Why? Because my consultant seems to think I'm a robot. No offence to her but yes she's got the qualifications and the job title but in truth she has no idea what it's like to live with T1. I feel like it's all text book talk. I'm not saying ignore your consultant but don't be hard on yourself if you aren't hitting the potentially unrealistic targets being set.
2) Try to avoid comparison. You'll read extreme variance on here. Some people seem to do the impossible and have amazing control (especially those 'what are your levels today' threads). If I read them on a bad day I just want to cry!! What's important is everyone is different and what works for them may not work for you so don't read too much into it. Also you mentioned age of diagnosis having a huge impact. It does but I wouldn't say it's easier for people diagnosed earlier in life, just different. I'm forever learning.
3) Take one step at a time. You mentioned avoiding carbs, testing and exercise. Firstly, your body has been through a lot. Easier said than done but get some rest and listen to your body. Once you've gained some stability you will be able to incorporate exercise but I wouldn't do it too soon. For example, I wouldn't exercise if I'm coming down with a cold because my levels are all over the place anyway.
4) Finally, being T1, if I avoid carbs my control is terrible. Low carbs yes but no carbs no. I'm not very good with the scientific/technical explanations but in short if you don't eat carbs your body thinks your starving and the liver will dump extra glucose into your system. Would you be able to share a typical day of what you eat? We may be able to help you out.

Anyway sorry for the essay and I hope this helps a little. Happy to private message if easier.

Best of luck

 

[NoKindOfSusie]

Hi there

Yes that all makes sense to me, horrible sense but sense all the same.

I could bore you to death with my whining but I guess I just need to deal with it. It is never going to be nice and I am never going to like it and I am going to spend the rest of my life thinking about the first 24 years of it when I could just do what I wanted, and this going to keep being horrible, but there's not much I can do otherwise.

 

[Hotpepper20000]

On the ordering web site it says that only two insurance providers cover it: Industrial Alliance and Manulife. If you have one of these and can get a prescription, I'm sure you'll have it covered. Otherwise, it's worth the cost.

I see that now. Thanks.