Newly diagnosed type 1

[Jade-1990]

Hi, I was diagnosed at the beginning of this year after being ill over Christmas. I had all the classic symptoms yet I was oblivious to the fact that they all pointed to one thing. If work colleagues hadn’t forced me into going to the doctors I don’t know how long I would have left it before bothering to get checked (I never like to go to the doctors for anything unless I’m forced). I’m 27 years old and was definitely not expecting to get diabetes, I didn’t know too much about it and so it’s all been quite overwhelming. So far I’m being told that I’m coping well and getting used to it all. The last week or so though I feel as though I’ve been really struggling and stupid as it sounds ‘feeling sorry for myself’, I’ve been on antidepressants for nearly a year now and it’s not uncommon for me to go through really low patches and I’m really trying to be positive about things but I’m just feeling a bit rubbish about everything. It’s all so overwhelming and I think I just need some reassurance that it’s not the end of the world, i’m aware that it’s a big change to my life but I’m struggling to think about the long term (and I know I shouldn’t be thinking so far ahead). I just wonder how other people deal with it, whether you’ve had it for 6months or 60 years..

 

[Scott-C]

I think I just need some reassurance that it’s not the end of the world

Jade, it's not the end of the world.

It's a different world but it's one you'll be able to figure out once you learn a bit more about it.

To begin with, while you're still learning the basic rules of T1, It will be messy, you'll make a lot of mistakes, you'll learn from those how not to make the same mistakes again, you'll have some bat-sh*t crazy hypos.

But then you pull through and you'll soon be teaching newly dx'd how to deal with this.

I was dx'd at 21, thought my life was over, but it really didn't turn out that way. Took a few weeks to recover from the horrors of DKA at dx, but after that, I've spent hours on ski-slopes, hacking around in racing dinghies, doing 300 mile cycling trips home and abroad, been backpacking for months on end.

Sure, I have to pay a bit more attention to things like my blood sugar levels and making sure I've got some sweets to hand when I've been doing those things, but it sure as hell hasn't stopped me doing them.

I've been doing it now for 30 years, I've no complications, because I've spent a bit of time making sure I stay kinda in range most of the time.

It takes a little more effort than your average Joe, but it's worth it in the long run. I can still go the pub at the weekend, and eat chocolate.

There is absolutely no reason why you can't live a full life with this. I've done so for 30 years now, and I'm planning on carrying on for at least another 30.

I can still remember how scary it seemed in the first few weeks, you're probably feeling that way too, but take it from an old hand, it becomes much less so as time goes by. You'll do this.

 

[poots]

The initial transition is the hardest part but once you get through the ‘beginners’ stage so to speak it’s much much more manageable. Once you get the hang of everything you can still do most of the things you’ve always done, just need to pay more attention to yourself than before.

 

[jadeashton24]

hello, I’m also called Jade! (Nice name btw ).
I was diagnosed last year at the age of 17, I’ll admit I found the first few months really hard, I would skip injections just because I, well I don’t actually know why to be honest, I just did. I’ve had 7 episodes of DKA since last March (3 being severe - 1 in icu and the other 2 in hdu) and since the last episode it has shocked me back into reality.
I would just not do my insulin when scheduled, would only really have my long acting insulin and correction units if my levels were above 20 (please don’t follow in my foot steps) .
What I’m basically trying to say is that it will get better (how you feel about managing the diabetes). Although the diabetes will never go away, you will soon be able to get back to your ‘normal’ lifestyle, which will hopefully help your mood as well.

Good luck and I wish you all the best

Xx

 

[Juicyj]

Hello @Jade-1990 What your describing is exactly how I felt when I was diagnosed 6 years ago, I felt very alone, I didn't know any other type 1's all I knew what I had to stay within my target range as the nurse at the hospital drilled that into me, what I didn't realise so much back then was that I would go high/low and I wasn't a robot who could perform to these tight parameters. My mantra has always been knowledge is power so the more you know the better equipped you are to cope, so a good book for you would be 'think like a pancreas' written by a type 1, talk about your feelings with others, I've learnt to push myself harder now so I run, cycle, swim, ski, I am fitter now than I've ever been, having type 1 should never stop you fulfilling your dreams, I know mentally it's a challenge to overcome dealing with diagnosis, you will get there x

 

[Sobo82]

I got diagnosed in October age 35yrs and hit it head on and used it as a big wake up call as I weren’t living a healthy lifestyle and in a strange way I’ve never felt or looked after myself better don’t get me wrong it’s got me down at times and felt why me but stay positive there’s worse illnesses out there at least we can take control of this plenty research and understanding of are condition helps massively these forums are priceless take care of yourself

 

[wildtoast]

Hi, I was diagnosed at the beginning of this year after being ill over Christmas. I had all the classic symptoms yet I was oblivious to the fact that they all pointed to one thing. If work colleagues hadn’t forced me into going to the doctors I don’t know how long I would have left it before bothering to get checked (I never like to go to the doctors for anything unless I’m forced). I’m 27 years old and was definitely not expecting to get diabetes, I didn’t know too much about it and so it’s all been quite overwhelming. So far I’m being told that I’m coping well and getting used to it all. The last week or so though I feel as though I’ve been really struggling and stupid as it sounds ‘feeling sorry for myself’, I’ve been on antidepressants for nearly a year now and it’s not uncommon for me to go through really low patches and I’m really trying to be positive about things but I’m just feeling a bit rubbish about everything. It’s all so overwhelming and I think I just need some reassurance that it’s not the end of the world, i’m aware that it’s a big change to my life but I’m struggling to think about the long term (and I know I shouldn’t be thinking so far ahead). I just wonder how other people deal with it, whether you’ve had it for 6months or 60 years..

Hi Jade, I've just been diagnosed too, at 24. I knew quite a bit about it beforehand because I'm a pharmacist but it's still completely overwhelming, you just don't think at this point in your life it's going to happen. Basically in my head I felt like this was a kind of a safe spot - most type 1s are diagnosed as children/teens and type 2 isn't something to worry about normally until ~40 unless someone is very overweight.

We'll just have to use it as the reason for looking after ourselves - something we should be doing anyway (and I know I wasn't before this happened). It's not the end of the world it's just a change, one of the first things my diabetic specialist nurse said to me was don't let this control your life - yes we'll have to make adjustments but it's still our lives!

 

[Jade-1990]

Thank you everyone, you’ve all helped me feel slightly better about it all. Some days I feel completely ready to face it all and other days I want to just hide away. I haven’t always put myself first, always worried about other people more, and now I’m trying to start learning how to do that. I know it will all take time and that’s another thing I struggle with! I’m so impatient with things and just want it to all be second nature to me.
And just like you @wildtoast i did not think I would get it at my age and Ive been really shocked at some of the people I’ve met/spoken to that have been even older and been diagnosed. The one person I knew with type 1 was 8 when he was diagnosed and he’s so used to it all that it was a massive shock learning about how to manage it. I definitely think these threads are going to help me, so thank you again everyone

 

[JRW]

Thank you everyone, you’ve all helped me feel slightly better about it all. Some days I feel completely ready to face it all and other days I want to just hide away. I haven’t always put myself first, always worried about other people more, and now I’m trying to start learning how to do that. I know it will all take time and that’s another thing I struggle with! I’m so impatient with things and just want it to all be second nature to me.
And just like you @wildtoast i did not think I would get it at my age and Ive been really shocked at some of the people I’ve met/spoken to that have been even older and been diagnosed. The one person I knew with type 1 was 8 when he was diagnosed and he’s so used to it all that it was a massive shock learning about how to manage it. I definitely think these threads are going to help me, so thank you again everyone

Hi Jade, firstly, we all have BIG ups and downs, it goes with the territory, it sounds like you're a trooper Sometimes I have to remind myself that I need a bit more leeway in terms of day to day 'fitness', and that I'm not what i was, but you can train on with fitness. I've gone on from age 37 diagnosis to 43 doing the same things though, I'm off snowboarding again in a few weeks time. it was a big learning curve the first time I went after diagnosis, now I know what I'm doing, and look forward to the challenge, and slopes.

 

[TheBigNewt]

I was 32 and diagnosed myself, didn't have to be hospitalized, went on MDI right away Ultralente (the original "Lantus") and regular. You'll get into a routine with time, learn what/when to eat and inject. How to correct. Just be careful getting low, those were the most dangerous events I went through by far. I was hospitalized twice for those once soon after diagnosis (too much exercise not enough food), and once about 7 years ago. Both times were during sleep now I'm really careful and have a product I use at bedtime to prevent it very effectively. PM me if you need information.

 

[Leeannea]

I was 32 and diagnosed myself, didn't have to be hospitalized, went on MDI right away Ultralente (the original "Lantus") and regular. You'll get into a routine with time, learn what/when to eat and inject. How to correct. Just be careful getting low, those were the most dangerous events I went through by far. I was hospitalized twice for those once soon after diagnosis (too much exercise not enough food), and once about 7 years ago. Both times were during sleep now I'm really careful and have a product I use at bedtime to prevent it very effectively. PM me if you need information.

Hi. I’d be very interested in this night time hypo prevention product as it’s my worst fear. I’d be grateful if you could PM me
Cheers, Leeanne

 

[lenaiiyy]

Hi jade,
Sorry to hear you’ve been struggling. To be honest, it’s a ***** of a disease, and I’m saying this from my own experience, and watching my mother live with it (she’s been type 1 diabetic since the age of 5) and go through the horror of complications that is caused by diabetes - heart problems, double amputation, kidney failure resulting in dialysis, to name a few. It’s no joke. I didn’t take it seriously and continued to do what I wanted since my diagnosis in 20@3, ate like ****, drank, didn’t take my insulin properly, basically acted like I was a non-diabetic, and landed myself in hospital with ketoacidosis at least twice a year, until about 2 years ago when I saw what was happening to mum, and even more so last year when the worst of it happened. Unfortunately, despite my recent efforts, I was told a few weeks ago that I have diabetic neuropathy, after experiencing severe pain in my feet, however because I’ve had a drastic improvement in my hba1c, so the pain may not be so severe in a few months time, so long as I look after myself and slowly improve, as my team are worried if I am too good too fast, this could prompt further complications (plus the amazing people here helped and gave me a wealth of information before all of this was confirmed). I really regret that I was so careless, and caused myself so much damage in such a small space of time. In saying this, it is completely normal to feel down and out, and yeah, sorry for yourself. This is something we have to live with for the rest of our lives. I have a lot of down and out moments, but my advice is to try and look after yourself as well as you can. Research and talk to other people that have had experiences, knowledge is power girlfriend.

Good luck and all the best

 

[NoKindOfSusie]

i did not think I would get it at my age

Welcome to my world, I was 24 (september last year), I thought I'd skipped all this horrible stuff.

 

[Jade-1990]

Hi jade,
Sorry to hear you’ve been struggling. To be honest, it’s a ***** of a disease, and I’m saying this from my own experience, and watching my mother live with it (she’s been type 1 diabetic since the age of 5) and go through the horror of complications that is caused by diabetes - heart problems, double amputation, kidney failure resulting in dialysis, to name a few. It’s no joke. I didn’t take it seriously and continued to do what I wanted since my diagnosis in 20@3, ate like ****, drank, didn’t take my insulin properly, basically acted like I was a non-diabetic, and landed myself in hospital with ketoacidosis at least twice a year, until about 2 years ago when I saw what was happening to mum, and even more so last year when the worst of it happened. Unfortunately, despite my recent efforts, I was told a few weeks ago that I have diabetic neuropathy, after experiencing severe pain in my feet, however because I’ve had a drastic improvement in my hba1c, so the pain may not be so severe in a few months time, so long as I look after myself and slowly improve, as my team are worried if I am too good too fast, this could prompt further complications (plus the amazing people here helped and gave me a wealth of information before all of this was confirmed). I really regret that I was so careless, and caused myself so much damage in such a small space of time. In saying this, it is completely normal to feel down and out, and yeah, sorry for yourself. This is something we have to live with for the rest of our lives. I have a lot of down and out moments, but my advice is to try and look after yourself as well as you can. Research and talk to other people that have had experiences, knowledge is power girlfriend.

Good luck and all the best

Thank you, it’s good to know I’m not alone in feeling rubbish about it. So far I’ve been told I’m doing well, and I don’t want to get to the point where I’m feeling so down about it that I stop caring about taking care of myself. Luckily I feel like I’ve got a good support system of people who won’t let that happen, (my auntie is a nurse who has been constantly on at me about the importance of taking care of myself). It sounds like you’ve had a rough time with it, I hope its getting better for you. Take care of yourself!!