New diagnosis T1

[1oldgal]

Hi, Just getting ready to retire and ended up in hospital for a week with DKA! What a shock. All the info I have found is more often than not based around young people and also identifies what information friends and family need in order to help in the event of a hypo or other emergency. My personal experience has been that my family have better things to do than worry about me and my disease and my 'friends' have basically dismissed it as a non event that loads of people suffer with and don't make a fuss. This is not only a scary disease for me but it is also a very lonely one. Thank goodness for the wonderful teams at the NHS who have been my support through the initial stages of this.

 

[Fluffy unicorn]

Hi, Just getting ready to retire and ended up in hospital for a week with DKA! What a shock. All the info I have found is more often than not based around young people and also identifies what information friends and family need in order to help in the event of a hypo or other emergency. My personal experience has been that my family have better things to do than worry about me and my disease and my 'friends' have basically dismissed it as a non event that loads of people suffer with and don't make a fuss. This is not only a scary disease for me but it is also a very lonely one. Thank goodness for the wonderful teams at the NHS who have been my support through the initial stages of this.

Good morning. Hope you are feeling better. My daughter was diagnosed a week ago too and she is 13. They say it's more common in younger people, but it doesn't mean it doesn't with older. We are all here for you as (some of us are still learning)! Read up on all leaflets and ask any questions you have on here. Just listen to your body and you will learn the signs of a hypo or hyper. And you also have plenty of phone numbers to call if you ever get worried.

 

[1oldgal]

Thank you so much appreciate it. I just found it a little sad that my friends and family are not as supportive as strangers. I hope you and your little one manage to get the hang of it all without too much trouble

 

[Fluffy unicorn]

I think in all honesty that people do not understand the seriousness of type 1 diabetes, and because they don't understand it they just don't seem to show interest in this. Even doctors and nurses do not know an awful lot about diabetes. It's a real learning curve all the time.

 

[1oldgal]

I agree with that,I had a doctor tell me recently that I can't have been recently diagnosed with T1, I must mean T2! Good luck to you guys with your journey.

 

[Fluffy unicorn]

That's really bad!!! My hubby has type 2 and didn't find out until he went to have his tonsils out. They then did a 3 month blood check to find out if this was correct and lost the results and never called him to tell him the results, he had to chase them up!!! Good old NHS hey!!!!!

 

[1oldgal]

How very frustrating, sounds like you guys have a lot on your plate, I don't envy you that. I will say though that the Diabetes team at my local hospital have been the best and I couldn't have survived this with out them

 

[Lisa66]

Morning. Well that certainly wasn’t a nice surprise...and DKA too. Did your family and friends not pick up the seriousness of the condition when visiting you in hospital?

I think most people probably don’t know anyone with diabetes, less with type 1 and see the majority of us toddling along leading perfectly normal lives, so think there’s nothing to it. They aren’t aware of the effort and planning that goes on in the background to allow us to do this. Whilst more unusual to be diagnosed with type 1 later, there are plenty on here who were diagnosed with the condition after 50...so you’re certainly not alone.

Can I ask when you were diagnosed? Have you been offered a Dafne (or similar) type course by your team? These are really helpful and also a way of meeting up with others in the same boat as you, which is nice. If I remember correctly you can take someone along with you. Maybe if one of your family or friends went with you they’d understand a bit more. Does your nurse have leaflets or information for you to give to those around you. It would certainly be good for them to know what to do if you should need their assistance.

Could it be those around you feel a little intimidated by it all? Think they won’t be able to understand?

It is a learning curve, but you will get a handle on this before you know it. It will soon become your new normal. This forum is a great place for information and support. So ask anything at all.

Welcome along.

 

[Bruce Stephens]

I agree with that,I had a doctor tell me recently that I can't have been recently diagnosed with T1, I must mean T2!

Well, T1 and T2 used to be juvenile and late onset diabetes, I think. But it's now thought (depending on where you put the line) about half of people with T1 are diagnosed later in life.

There's no excuse for anyone thinking it's impossible nowadays. We had a late-diagnosed T1 Prime Minister, after all. (Though perhaps people just want to forget her.)

 

[SB2015]

Welcome to the forum @1oldgal From another late starter with T1. I was 53 at diagnosis, and at that time I knew absolutely nothing about Diabetes, apart from there are two types. We soon learn, and as you have found out T1 can happen at any age.

I am sorry that your friends and family do not seem to be giving you the support that you need. It may be that they simply don’t understand how involved it is. Even friends who are sympathetic were surprised at how much was involved when we went away together. Keep them informed and it is important that they know what to do if you have a severe hypo.

Glad that you have a good health care team, and there are plenty of people on here that can answer questions.
Keep in touch and keep asking. No questions are considered silly on here.

 

[Flower]

Hello and welcome @1oldgal , glad you’ve joined us. 🙂

Sorry you’ve had such a frightening diagnosis in DKA, that really puts your body through turmoil and takes a while to get back to equilibrium once you get an insulin supply back. A diagnosis is a huge shock at any age and it does turn your life upside down at the start. Piece by piece things will start to settle into a new normal and you’ll start to feel safer in your own skin. As already said T1 used to be called Juvenile onset diabetes I used to go to the ‘Jod’ clinic! That was replaced with T1 as it was obviously so wrong to limit a T1 diagnosis to youngsters but sadly the assumption still exists.

Encourage your family and friends to be aware of what to do if you have a hypo. Most hypos we can see to ourselves with glucose/ jelly babies but very occasionally we need help to get glucose down us.

Most of my friends really don’t know what the deal is with diabetes and have no idea what a carb is. They think I can’t eat sweets but chips and pizza is ideal because it’s not sweet and ask me who comes to do my insulin! 🙄

Please don’t feel isolated and lonely- we all ‘get’ diabetes on here and are happy to support each other and share our cumulative experiences.

Wishing you well 🙂

 

[Bruce Stephens]

As already said T1 used to be called Juvenile onset diabetes I used to go to the ‘Jod’ clinic! That was replaced with T1 as it was obviously so wrong to limit a T1 diagnosis to youngsters but sadly the assumption still exists.

I was diagnosed when I was 15, so in that sense I fall into the expected category. (I sometimes note that I was juvenile once upon a time.)

 

[TheClockworkDodo]

Hello @1oldgal and welcome to the forum 🙂

I was diagnosed at 44, and I spent a week in hospital with DKA too - I know it can be a shock, but I felt so much better after I was given insulin that I was just pleased to be type 1 and be allowed insulin rather than having to struggle with type 2 meds with nasty side effects!

Sorry to hear that your family haven't been supportive/understanding, but I'm glad you have a good diabetes team at the hospital. I did too, especially the diabetes specialist nurses, who were amazing. And soon after diagnosis I was told by a clueless generalist nurse that as I was an adult I must be type 2 (I'm not sure what she thought happened to children with type 1 when they grow up 🙄 ).

If you have any questions or if there's anything you're struggling with, please do ask - someone here is sure to be able to help.

 

[rebrascora]

Hi and welcome from me too.... also a recently diagnosed late onset Type 1 at 55yrs old. Hope you are managing to balance your BG levels better than me at the moment!
I'm so sorry that you are feeling isolated with your condition. I have great family and friends who are learning all they can to help me but don't feel like I have as much support from HCPs as I would like much as they are very nice.... just not available when I need them. Thankfully this forum fills the gap and I would be absolutely lost without the wonderful support and advice from the kind members here.
Looking forward to my DAFNE (Dose Adjustment For Normal Eating) course in October. Have you been offered such a course. If not, it is worth asking your team to refer you for one. I went on a short carb counting half day course and one of the most valuable aspects was chatting to another diabetic in person and seeing how they managed things.

 

[1oldgal]

Thank you all for taking the time to post comments and encouragement. I really appreciate it and don't feel quite so alone. I will make another attempt at explaining to friends and family the seriousnes of it but I may wait a while until i have better control. I have attended the DAFNE course and found it invaluable so just putting in the hard work now to get the HbA1c down to an acceptable level - nearly there. so thanks everyone, no doubt we'll be in discussion again when i ask one of my many questions 🙂

 

[rebrascora]

Good to hear that you have had a DAFNE course and found it really helpful.
Unfortunately your family and friends may only realise how serious your condition is if they witness you suffer a serious hypo. Hopefully that situation will not arise but if it does, they will at least know to inform medics that you are diabetic.
My sister is brilliant (so keen to learn and support me) but it surprises me how she sometimes gets it totally wrong, like when I was telling her about having a hypo and she said something like she hoped my partner had the gumption to inject me with insulin if I lost consciousness.... which of course is totally the wrong course of action and could actually kill me. She also went out of her way to prepare a "carb free" dessert for me yesterday, which turned out to be a chocolate mousse made with 75% dark chocolate, raspberries, avocado and maple syrup. I ended up with a BG reading 15.3 last night because I took her at her word and didn't bolus for it and only realised afterwards that she was somewhat off the mark, when we were discussing ingredients! I was so thrilled that she had made such an effort to cater specially for me (there was a dinner party of 7) when she is a very reluctant cook, I couldn't really say anything about it not exactly being "carb free" and it was definitely an acquired taste!!

 

[Bruce Stephens]

She also went out of her way to prepare a "carb free" dessert for me yesterday, which turned out to be a chocolate mousse made with 75% dark chocolate, raspberries, avocado and maple syrup.

To be fair, with the exception of the maple syrup (which is quite a bit exception, admittedly) those aren't terrible ingredients to use! (A quick web search suggests people do make chocolate and avocado mousses, though I didn't notice any including raspberry or maple syrup; I'd guess those would make the flavour weirder, and avocado and chocolate sounds pretty weird to begin with.) Maple syrup is an odd mistake to make; even if you don't look at the label, it's surely not hard to guess it's going to have a bit of sugar in it.

(When offered the opportunity, I tend to avoid mentioning that I'm diabetic. I'm not a low-carb person, so I can eat whatever's being offered to everyone else, and on the whole it's probably better (and likely at least as suitable) as whatever they'd offer for someone they knew had diabetes.)

 

[rebrascora]

The problem was probably compounded by the fact that she told me there was a carb free dessert for me after I had bolussed 4 units for the meal, and was piling up my plate with veg and meat, so decided I had better put some carbs on my plate to soak up the insulin if there was going to be none in my pudding. I helped myself to a small Yorkshire pudding and a single roast potato. It was an absolutely lovely meal even if my dessert was a bit odd but I would guess there was probably 20g of carbs in the mousse taking into account the chocolate, maple syrup and rasps..... she had actually modified the recipe from orange to raspberry because she knew that rasps were lower carb and that I like them. I think it may have just been a poor choice of words on her part describing it as "carb free" but in the happy chaos of a family meal it's significance was lost. My levels have been running high (10s-12)recently anyway, apart from the odd hypo, so the 15 wasn't that huge a rise but would have preferred to avoid it.

 

[1oldgal]

Good to hear that you have had a DAFNE course and found it really helpful.
Unfortunately your family and friends may only realise how serious your condition is if they witness you suffer a serious hypo. Hopefully that situation will not arise but if it does, they will at least know to inform medics that you are diabetic.
My sister is brilliant (so keen to learn and support me) but it surprises me how she sometimes gets it totally wrong, like when I was telling her about having a hypo and she said something like she hoped my partner had the gumption to inject me with insulin if I lost consciousness.... which of course is totally the wrong course of action and could actually kill me. She also went out of her way to prepare a "carb free" dessert for me yesterday, which turned out to be a chocolate mousse made with 75% dark chocolate, raspberries, avocado and maple syrup. I ended up with a BG reading 15.3 last night because I took her at her word and didn't bolus for it and only realised afterwards that she was somewhat off the mark, when we were discussing ingredients! I was so thrilled that she had made such an effort to cater specially for me (there was a dinner party of 7) when she is a very reluctant cook, I couldn't really say anything about it not exactly being "carb free" and it was definitely an acquired taste!!

Sounds like an aquired taste but 100% for effort. Fingers crossed my friends and family will at some point be interested enough to listen to or look at the information on T1. I live in hope but i'm not holding my breath on that one. thanks for your support.

 

[Bruce Stephens]

Fingers crossed my friends and family will at some point be interested enough to listen to or look at the information on T1.

On the whole I prefer if people are a bit understanding if I decline that extra slice of iced fudge cake and similar, but not to try and offer adapted food. (Great if there's an option of fresh fruit or similar for desert, but likely I'm not the only one who'd sometimes prefer that.)

(Maybe that's just my, erm, maturity. I was diabetic back when "diabetic food" such as "diabetic chocolate" was a thing. Though chocolate sweetened with fructose wasn't that bad, I thought; I still prefer good quality dark chocolate. Chocolate sweetened with sorbitol doesn't deserve to be revived. DAFNE (and the same ideas with different names) has changed things a lot.)