Type 1 diagnosis-feel like I'm struggling

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Hannahpowers

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Relationship to Diabetes
Type 1
I got diagnosed just under a week ago with type 1, after a tricky 2 visits and no treatment at my local A&E dept. I finally got to see an endo, and got diagnosed straight away, meeting an excellent unit who got me up and running on insulin.

Got the hang of the injections ok, and blood level testing, but over the weekend I started to struggle and now I feel like everyone around me has gotten used to the fact I have this 'label', but I haven't quite got to that bit yet. I was focussing on trying to get my levels into the normal zone! i hadn't really had time or felt well enough to get to the emotional bit!

I went back to work today, and although everyone is really supportive, I don't feel like I can talk to anyone properly. Everyone is the same, they all talk about how I will "get on with it all", it'll become like "brushing your teeth", people with diabetes can still lead normal lives etc.... That's all great, but maybe I want to talk my concerns through, maybe I want to get these worries out and maybe those are all just as valid and normal thoughts and feelings as the positive thinking comments too?

I think my boyfriend has gotten fed up of hearing me get a bit tearful about what the future may hold, and I want to get on and move away from feeling down, but I just can't pass it just yet. I can't talk to my parents as they will only worry more than they already are (im 31 as well, but that doesnt stop them worrying) and I'm not sure my friends are understanding enough to listen. I'm trying to not get upset in front of my two kids, they understand a little bit, but I've gone easy on the info so far.

Half of me thinks this is all fine, but the other half of me thinks-no wait, this is a pretty life changing thing you are going through, take it easy on yourself, you're allowed to be upset and a bit down and a bit confused... I think?!?

I hope theses are all normal feelings!? I think I just need to get all this negative worrying out of my system somehow and learn to move on?
 
Hi Hannah, welcome to the forim 🙂 Goodness! Just a week in, no wonder you are feeling as you are! A diagnosis opf diabetes is a major event, but unfortunately people who don;t have it really can;t comprehend what it all means. Don't try and do things at other people's pace, you need to take the time to get used to what all this entails. It is true that diabetes can be managed well and doesn't need to take over your life, but you do need time to learn how to deal with it.

I would highly recommend getting hold of Type 1 Diabetes in Children Adolescents by Ragnar Hanas - it will give you an excellent grounding on all aspects of Type1, Please ask any questions you may have and we will try our best to help. So glad you found us so soon after your diagnosis, you will get some great support here 🙂
 
Hi Hannah, welcome to the boards. There's a great bunch of people on here so feel free to ask questions, rant or have a cry. Everyone is very supportive and understands.

Being diagnosed with diabetes is a big thing and it will take time to understand it and come to terms with it. It does get easier but as Notherner says it takes time and everyone at a different pace 🙂
 
High Hannah, you have done yourself a favour getting on hear ! Talk is good !😎
 
Hey Hannah! Welcome!

This is pretty much the exact post I posted 6/7 months ago when I got dianosed =)
The boyfriend will put up with it if he loves ya, you can't help the fact that you get emotional. You can't help the way you feel. All you can do is talk about it and learn about your diabetes to try to control it. You will have moment where you think "I'm fine this diabetes thing is easy" and there are time where you will hate it more than anything else but you do have it and will have to deal with it in your own way 🙂

There are LOADS of supportive people on here who will answer ANY question, so don't feel afraid to ask. This forum has really helped and is still helping me I hope it does the same for you! If you need a chat feel free to message me 🙂
 
Hi Hannah

Welcome to the 'club' no one wanted to join 🙂

Sorry to hear about your diagnosis. Completely natural that it will take you some time to come to terms with the news. Some liken it to grieving for your lost health.

Ask away with any questions that crop up - someone around here will more than likely have gone through something similar, and nothing will be thought too obvious or silly.

M
 
Hi Hannah. Welcome 🙂

Just to cheer you up, it can take years to properly come to terms with it all but the routines do quickly slot into place. The more you can understand what's happening on the inside, the more control you can acheive over it. And control may remove some of the fear.

Have you tried writing your feelings down? Maybe you could then present them all in one go so that your boyfriend can see the enormity of it. Some of your fears may be based on unfounded myths, so you may find that you can tick them off one by one.

But importantly, everything you say is normal. And we still experience some of what you're feeling after decades. As do non-diabetics sometimes. Just about other things. But you're need to be listened to is a bit more immediate! 🙂

Rob
 
Hello Hannah and welcome - it can be a bit of a roller coaster emotions wide when you are first diagnoses. There is a lot to get rid of and you also need to give yourself time to accept what has happened. You may get all the same kind of feelings as during a bereavement, denial, anger etc so don't worry if you do that's normal.

If you feel you need to talk to someone - some clinics provide numbers for counsellors or you could try the diabetes care line.

http://www.diabetes.org.uk/How_we_help/Careline/
 
Wow! I'm completely humbled by these helpful, friendly and supportive responses and after a good nights sleep for the first time in a while, I have to admit getting my little rant out the way has made me feel a bit better 🙂

I also had a couple of appointments made today, got some more supplies of needles, test strips, another sharps bin etc - so now I'm not so panicky about running out of anything too suddenly. And I think I'll take on board the suggestions of keeping some form of journal to get some of these confusing emotions out.

I will be reading a whole host of these threads too, so looking forward (in a weird sort of way) to learning more, getting the routine embedded and settling in with this now. I'm keen to learn how this new version of myself works, what will make it tick and what will make it run better 🙂
 
Hi hannah and welcome to the forum, firstly i would say everything you are feeling is perfectly normal reaction to it all, this is a really good place for support for sure
 
Hannahpowers said:
I'm keen to learn how this new version of myself works, what will make it tick and what will make it run better 🙂
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That sentence alone suggests that you will do just fine.

There's never been a better time to be a diabetic - and with modern insulins, pens/pumps/delivery and monitoring devices there are more ways than ever before to fit diabetes into a [relatively] normal, healthy, happy life - and you'll be checked and monitored closely so the chances are you have more chance of anything untoward being spotted early.
 
There's never been a better time to be a diabetic Mike???????

You might believe that now (and FWIW so do I actually!) but just over a week since diagnosis? - no chance!

Crikey - way back then I was still in hospital and everything felt weird for ages after that too. I can't tell anyone how long it takes for it to feel normal, only that at some stage, it just does.

And don't be surprised if later it 'hits' you again and you fall about in another heap and cry a lot. Again. But that gets less and less often too until that stops as well! Possibly I had the advantage that my husband hadn't got a clue what to do and so he just used to hug me a lot. And didn't offer any platitudes. He was a good observer really, he could see my mum and others doing just that and hear me moaning about them after. (Like that helps ....) I just knew he cared, is all - which was MEGA important.

Come on here and just rant whenever you need to, is my advice!
 
trophywench said:
There's never been a better time to be a diabetic Mike???????

You might believe that now (and FWIW so do I actually!) but just over a week since diagnosis? - no chance!
Click to expand...

Ahahahahaha this really made me giggle, Thanks Trophywench!! :D
 
Welcome to the forum Hannah 🙂

As everyone has said, it's a very normal reaction to be upset and emotional. I think it took me a good 3 months after diagnosis before properly breaking down. I'm sure your other half will be there for you every step of the way 🙂 xx
 
Hi Hannah,

Welcome to the forum, there are so many people that can give you help and support on here. I was 30 when I was diagnosed with Type 1, I was an army sergeant and had 2 children under 3...so I know exactly how you feel. That was 16 years ago and I finished my army career and left as a warrant officer. It sounds like you are doing brilliantly....it's really important that you stay positive. Don't believe the 'diabetes should not change your life'....it does! It is really hard work to maintain good control, testing your sugar level is so important and don't feel that 7 or 8 times a day is too much...despite what your gp might say...You will soon become an expert in diabetes. It will take some time to get used to the 'stigma' attached and you will get sick of talking to people who ask you ridiculous diabetes related questions....'do you have too much sugar?' type questions! The bonus of my diabetes diagnosis meant that I gave up smoking and regular health checks should pick up any problems that I may face rather than being completely missed if I weren't a diabetic. I hope you are coping well and look forward to hearing about your progress. 🙂
 
Hi Hannah

Welcome to the forum. I just wanted to add a parent's perspective. (I have a 17 year old T1 son). No doubt your parents are scared witless for you, even though you are an adult. If you have a half decent relationship with them I would suggest you open up, and have a damn good cry with them. They will be really worried for you anyway, so letting some of your emotion go there is no bad thing. Share things with them, the information you have learned and any worries you have. A mum's natural instinct is to love, comfort and help, so even if there is nothing they can actually do, just to talk to them will do you all good I am sure. Open up and let them in. They will appreciate it, I can guarantee. They probably feel worse not knowing too much. As my son was a teenager when he was diagnosed, we were involved in all the early education about it. Your parents have probably been left in the dark with only their own ideas of what they think it means.

There are so many misconceptions about diabetes, and as others have said before, treating it with respect there is no reason you can't live a full and happy life, just making minor adjustments here and there.

This forum provides a wealth of knowledge and everyone is so friendly. I felt so lost after my son's diagnosis, boring the pants off all my friends, but here I found somewhere to pour out all my worries, and share all my son's good news, and people support you through thick and thin, and of course they all understand. A major bonus. Tell your parents to look on here too if they use a computer. It will really help put their minds at rest.

Keep your chin up, and just go with the flow. It's early days yet, you are bound to be all over the place emotionally. It does take time to settle down and get used to.

Good Luck
Tina xx
 
Thanks for all the support!

I've read all the replies to my first 'rant' ) 🙂 ) and I'm still overwhelmed at how friendly everyone is - so thank you to everyone fo rthe tips, advice and general loveliness, I have taken a lot of your comments on board - I'm just over 2 weeks since the D-day and I am feeling a hell of a lot better - there's been some blood, sweat and tears (the latter, too many to count) but I would say that I'm nearly 100% back to normal (in terms of how well I feel).

However, I have just recieved a copy of the letter that the diagnosing endo sent my GP and there are some interesting, if worrying information.

First off, the endo states I may have been LADA for some time prior due to a series of one off blood tests for the past 10 years which apparently showed higher than normal glucose count - now I'm wondering why my GP had not referred me or discussed any potential diabetes links earlier? I have a high predisposition of CVD (both parents on heart related medication and 3/4 grandparents have/had heart conditions and complications) and this week, all the care teams have noted this and keep talking about complications of T1. This has got me even more concerned about no advise for some time and potentially high gl for a prolonged period. I only felt 'ill' for 4 days before diagnosis though.

Secondly I got the blood results from the A&E visits (that led me to the endo and resulted in the T1 diagnosis). Obviously I've read up as much as I can, and I even called the clinic to see if the nurse could enlighten me with more on the results but said I'd have to wait to see the consultant (not for another 3 weeks). The concern I have is the Hb1ac levels came in at 13.9% - is this as worringly high as I think it may be? I checked out scales and charts that I can find, and this points to an average 10 week gl of 18!!! When I was admitted to A&E, my levels were pushing 30mmol, so I knew it was pretty dismal. I see loads of forum folk add their Hb1ac %'s to their signatures - should I be pushing to discuss this with anyone I can, and sooner than waiting 3 weeks? There were other results that I plain didn't understand (c-reactive proteins were v high as was creatinine and others).

I'm on novorapid and lantus and all seems to be going OK - I had a wobbly day with injections, but other than that all fine and happy with the procedure. My levels are all over the place, and I'm being majorly careful with everything I eat and drink (was always a low fat, low carb, no added sugar person due to having 2 young kids at home and being a weight concious normal female!). However, I'm feeling a bit crappy that my levels are yo-yoing from 6.7 to 18 in the space of 2 hours. Care team closely monitoring and upping doseages, so things seeming to settle, but I feel a bit anxious that I've got to wait another month to find out exactly how bad things have been - or is that a regular occurence at first diagnosis of T1?


Any thoiughts - should I panic now or wait to see the consultant and let the insulin doing it's magic to settle things further?

Thanks...:confused:
 
Hannahpowers said:
...The concern I have is the Hb1ac levels came in at 13.9% - is this as worringly high as I think it may be? I checked out scales and charts that I can find, and this points to an average 10 week gl of 18!!! When I was admitted to A&E, my levels were pushing 30mmol, so I knew it was pretty dismal. I see loads of forum folk add their Hb1ac %'s to their signatures - should I be pushing to discuss this with anyone I can, and sooner than waiting 3 weeks? There were other results that I plain didn't understand (c-reactive proteins were v high as was creatinine and others).Thanks...:confused:
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Hi Hannah - don't panic! The HbA1c test, although it gives an indication of control over the previous 6-12 weeks, is weighted towards the most recent levels to some extent, so it's quite possible to climb quite a bit during the crisis that led to your diagnosis. It's thought that I was probably LADA for up to two years prior to diagnosis, then a virus triggered a situation where my pancreas could no longer cope. My blood sugar level at diagnosis was 37 mmol/l and my first HbA1c was 11.8%. Six weeks later I had another HbA1c done and it was 6.8%. Since then they have all been under 6%.

I think that things will improve week by week as you make more adjustments and get more experience of what may raise your levels. One thing I learned much later was that the timing of your insulin injections for food can also play a big part in reducing any post-meal spikes, so this is something you may wish to discuss with your DSN. I usually inject around 15 minutes before eating these days, but it can be a very personal thing. As the weeks go by you will gain a huge amount of personal experience about what you need to do - you've already got a lot of knowledge, now it is down to time and getting more of an instinctive feeling for what will work given the type of food, pre-meal levels, activity levels etc.

The protein and creatinine tests relate to your kidney function and it is highly likely these will also improve - I believe I was in a similar situation with those too and am now perfectly normal 🙂

You are doing great! Well done and keep it up - and keep asking questions 🙂
 
My son's blood sugar levels on diagnosis was somewhere in the mid 20's, I have forgotten exactly what, but his HbA1c on diagnosis was 15.8%. Within 3 months it was down into the 7's, so don't worry too much about what it was at the start. It will actually really give you a boost in the early months as you see it start to reduce, and it will! Are you on fixed doses of insulin, or have you been taught to carb count? In no time you will start to take full charge yourself, and you really will start to see most figures within the target range.

Glad to hear you are feeling much more yourself, but dont be alarmed if a few weeks in you have a sudden meltdown again. It will come in waves for the first little while, but hopefully before too long it will just become a part of your everyday life. Good luck!

Tina
 
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