Newly Diagnosed Type 1

[daviidjames]

Hi,

I’ve just been diagnosed with type 1 diabetes in the last 4 weeks. It’s been a bit of a difficult time trying to come to terms with it all. I’m 29 years old and healthy. It only got picked up due to a random blood tests as my levels were sitting at 22mmol. I’ve got these back down to anywhere between 5 & 9 but having random episodes of hypos and hypers trying to figure it all out. Luckily I haven’t had a severe hypo yet.

I have been really struggling mentally with it all though. Been having some panic attacks and I’m just generally really quite angry about the whole thing. Also have days where I’m quite sad about it and my mental health in general has suffered quite a bit from the whole diagnosis. People keep telling me it’s going to be fine but I feel like that completely devalues the situation and nobody really understands the adjustment I constantly have to make in my life now.

Is this normal? Should I go and speak to someone or is this something that will fade in time? I just feel like my whole life has fallen apart in the last 4 weeks and it’s all completely different now.

 

[plantae]

I was diagnosed in October and experienced pretty much the same as you describe (I'm type 3c which is being treated as type 1 -- which I basically am just with a different cause). In many ways I am still experiencing all of those things you mention. I had a bit of a meltdown the day before yesterday and into yesterday. I find it hard mentally. Unfortunately I've also had to deal with hypos. I understand the adjustments you have to constantly make.

My opinion is that what you describe is a normal/typical reaction. Well, I experienced the same anyhow so that's at least two of us. If you think going to speak to someone professional might or could help you then I think that's a very good idea. It's a lot to take in and a lot to deal with

 

[CatsFive]

Yes, it's normal to feel like that. If you read other 'newly diagnosed' posts almost all of them mention the mental turmoil. One thing to remember is that type 1 isn't caused by how you have lived your life in any way.

I'm not type 1 so can't comment on that aspect except to say make sure you always have something sugary with you for use if you have a hypo. Many years ago I want walking in the Dales with a former friend who was type 1 - and had been for years. He didn't do that, it very nearly ended badly. A few mouthfuls of chocolate turned him from a pale sweaty confused shambling wreck back to his normal self. I always carried some after that.

 

[Deleted member 527103]

Many years ago I want walking in the Dales with a former friend who was type 1 - and had been for years. He didn't do that, it very nearly ended badly. A few mouthfuls of chocolate turned him from a pale sweaty confused shambling wreck back to his normal self. I always carried some after that.

That is very kind of you. Unfortunately, chocolate is no longer recommended to treat a hypo. It is better than nothing but the fat in chocolate slows down the absorption of the sugar. Therefore we should be carrying fast acting carbs such as jelly babies or dextrose or small cartons of orange juice or small cans of full fat coke. I have tubes of Lift tablets scattered around my bags and coat pockets,

 

[CatsFive]

That is very kind of you. Unfortunately, chocolate is no longer recommended to treat a hypo. It is better than nothing but the fat in chocolate slows down the absorption of the sugar. Therefore we should be carrying fast acting carbs such as jelly babies or dextrose or small cartons of orange juice or small cans of full fat coke. I have tubes of Lift tablets scattered around my bags and coat pockets,

You are carrying something, that's what matters and thanks for the information about chocolate.

Despite the fat, the chocolate thankfully worked for my friend - he guzzled a bar in a couple of minutes.

 

[JAT1]

When I go out I always take an apple with me in case I feel low. Type 1 gets easier to deal with as time goes on. One great thing about diabetes compared to other diseases is that there is something you can do about it. You can't control all the influences on blood sugar, but you can control what you eat. Attitude matters hugely so be optimistic and learn as much as you on the subject. I find the whole counting carbs, insulin thing less of a nuisance now than brushing my teeth or dishes. Good luck on your journey

 

[T1Dscientist]

It’s very normal to feel like this. I had the same experience.

I was diagnosed just under 3 years ago, when I was 18. Sixth form closed in March because of covid, I was diagnosed in April. I was idle at home and was feeling helpless. Crying every night and nonstop researching everything about diabetes. I stopped getting emotional for a bit but 6 months after my diagnosis I ended up with a new job and moved out of town. With no family or friends near me I was depressed. Every 20th of the month I was crying for a few hours in my room (I got diagnosed 20th April 2020). I was forcing myself on random diets and I never really received help from anyone. In some ways family and friends make it harder because they don’t understand and keep bugging you with the same questions like “why aren’t you eating this”, “why are you injecting before you eat and not after” and people getting irritated because I mention carbohydrates and think I’m trying to make myself the centre of attention.

3 years on, I’ve gained nearly 20kg, HbA1c has climbed to 8.4%, constant low energy and low mood. I’m sorry you probably wanted to hear that “it gets better overtime” but I don’t think it does, it gets worse, you just get better at coping.

I muddled my way through and I’m half-coping. If you do need help then don’t be afraid to ask for it but I’m just saying that I never really had the help I wanted. I wanted to get an insulin pump and sensors, I wanted specific insulins to try out but was just hitting my head against a brick wall.

I still remember my first hypo below 3 and how I could barely walk to the fridge. Had a bit to eat and literally fainted on the bed before waking up 30min later. My body’s used to it now.

 

[CatsFive]

It’s very normal to feel like this. I had the same experience.

I was diagnosed just under 3 years ago, when I was 18. Sixth form closed in March because of covid, I was diagnosed in April. I was idle at home and was feeling helpless. Crying every night and nonstop researching everything about diabetes. I stopped getting emotional for a bit but 6 months after my diagnosis I ended up with a new job and moved out of town. With no family or friends near me I was depressed. Every 20th of the month I was crying for a few hours in my room (I got diagnosed 20th April 2020). I was forcing myself on random diets and I never really received help from anyone. In some ways family and friends make it harder because they don’t understand and keep bugging you with the same questions like “why aren’t you eating this”, “why are you injecting before you eat and not after” and people getting irritated because I mention carbohydrates and think I’m trying to make myself the centre of attention.

3 years on, I’ve gained nearly 20kg, HbA1c has climbed to 8.4%, constant low energy and low mood. I’m sorry you probably wanted to hear that “it gets better overtime” but I don’t think it does, it gets worse, you just get better at coping.

I muddled my way through and I’m half-coping. If you do need help then don’t be afraid to ask for it but I’m just saying that I never really had the help I wanted. I wanted to get an insulin pump and sensors, I wanted specific insulins to try out but was just hitting my head against a brick wall.

I still remember my first hypo below 3 and how I could barely walk to the fridge. Had a bit to eat and literally fainted on the bed before waking up 30min later. My body’s used to it now.

Sorry you are having such a hard time, however the OP needs to know it's not like that for everyone regardless of if they are T1 or T2.

I totally understand the questions bugging you - I was very happy to be home along when I was recovering from major emergency surgery as it meant I didn't have people telling me how to be ill. Actually ditto when I have a cold or whatever!

One of my closest friends bugs me somewhat with questions and trying to look after me, when she is being especially irritating I saw 'yes mother' as that's what she is doing - trying to over-mother me. And I've deliberately not told her about my diabetes! And then I divert the conversation by asking her about something else. BTW this is all over the phone as she lives in Europe.

But people only ask because they care. It can be hard to keep sight of that. And again it's hard, but going in a huff won't stop the questions. A educational answer might, so might a polite 'keep your nose out' one. I suspect both would have to be repeated several times.

In this day, good information from the Internet might help. By that I mean information from here, and other reputable sites. Not some Tik Tok 'doctor'. For example, the NHS website has a page that to me clearly describes in simple language when long-acting and fast-acting insulins are taken:

Type 1 diabetes – About insulin

Find out about insulin for type 1 diabetes.

www.nhs.uk

I find myself wondering if you are somewhat depressed at present? I also have no idea if you are male or female, but if female could menstrual hormones be causing problems?

 

[Rokaab]

People keep telling me it’s going to be fine but I feel like that completely devalues the situation and nobody really understands the adjustment I constantly have to make in my life now.

Unfortunately no-one but a Type1 (and probably some Type 3c's) know exactly what things/problems Type1's have to deal with on a daily basis, and they will just not understand completely (some who've lived with T1's may know a lot though), luckily my best friends know they know very little about my condition so help me when I need it but never actually claim they know how to deal with it.

You will get used to it, some days will be bad, but some days will be good, luckily now there is a lot lot more tech available than quite a few of us had when we were first diagnosed, so this should at least help you and make it easier.

One thing I will say is though, don't set yourself unachievable goals or you will just be a mess and don't try to rush things
For example my control is a lot better than it ever used to be, but I know it will never be as good as some of the T1's on these forums, and whatever you do do not compare your numbers with many of the T2 remission posts numbers, T2 is different to T1. I certainly couldn't get to those numbers and still be safe

 

[Jaylee]

Hi,

I’ve just been diagnosed with type 1 diabetes in the last 4 weeks. It’s been a bit of a difficult time trying to come to terms with it all. I’m 29 years old and healthy. It only got picked up due to a random blood tests as my levels were sitting at 22mmol. I’ve got these back down to anywhere between 5 & 9 but having random episodes of hypos and hypers trying to figure it all out. Luckily I haven’t had a severe hypo yet.

I have been really struggling mentally with it all though. Been having some panic attacks and I’m just generally really quite angry about the whole thing. Also have days where I’m quite sad about it and my mental health in general has suffered quite a bit from the whole diagnosis. People keep telling me it’s going to be fine but I feel like that completely devalues the situation and nobody really understands the adjustment I constantly have to make in my life now.

Is this normal? Should I go and speak to someone or is this something that will fade in time? I just feel like my whole life has fallen apart in the last 4 weeks and it’s all completely different now.

Hi,

What can I say.
I don’t think fluctuating BG levels help with mood. (But that’s easier said than done regarding management.)
“People” tend to misunderstand a lot of “stuff” if the haven’t bought the “tee shirt.” But I guess we all at some point or another get the wrong end of the stick regarding someone else’s journey?

How well do you get on with your DSN? (Or your team.) Back in my day as newly diagnosed it felt more like some sort of “rehab?”
But in recent years I am asked about my mental health. I rationalised everything years ago. However, it might be good to bring your anxiety up with your nurse..

It may be a starting point for a solution..

Best wishes.

 

[LilLoWilliams]

Hi, I’m in a very similar situation also diagnosed with type 1 a month ago. 23 years old and never had any major health problems before this. Fainted at home after not feeling 100% for about a week and by the end of the day I’m in A and E being told I’m diabetic. Felt totally out of the blue and like my whole life was turned upside down in the space of 24 hours. It’s been very up and down for the past month and have definitely had some very low moments but I am completely with you on the anger surrounding the whole situation. Especially since people seem to like telling me what I should be doing since their second cousin or their boyfriends distant friend has it. I keep trying to tell myself that they’re just trying to help but at the same time it just drives me insane. And I completely understand some people not understanding what a huge life changing diagnosis this is, feels like some people just expect us to be fine from the get go but it’s like trying to learn how to live in your body again, literally everything’s changed. I think you should definitely speak about it to someone even if it’s just a friend, keeping these feeling bottled up only makes these dark moments even harder to cope with and makes it all feel like you’re drowning.

 

[Circuspony]

I was diagnosed 6 years ago in my 40s. I was pretty resigned to the diagnosis to start with - my GP had insisted I must be type 2 and nearly killed me with that - so the correct diagnosis was a relief then.

But the monotony and constantly feeling like you're getting it wrong does start to get to you. Add in those well meaning friends and relatives who serve up sugar soaked cake (my mum) or tell you so & so's friend's son's nephew has it and doesn't let it affect their life and yup - can get very fed up

So you have to learn to accept that there will be times when you feel fed up but the injections will be here to stay. Sometimes you have to dig deep but also go easy on yourself. I hit 14 today after a small piece of cake and just rolled my eyes.

 

[Rowgirl]

Hi,

I’ve just been diagnosed with type 1 diabetes in the last 4 weeks. It’s been a bit of a difficult time trying to come to terms with it all. I’m 29 years old and healthy. It only got picked up due to a random blood tests as my levels were sitting at 22mmol. I’ve got these back down to anywhere between 5 & 9 but having random episodes of hypos and hypers trying to figure it all out. Luckily I haven’t had a severe hypo yet.

I have been really struggling mentally with it all though. Been having some panic attacks and I’m just generally really quite angry about the whole thing. Also have days where I’m quite sad about it and my mental health in general has suffered quite a bit from the whole diagnosis. People keep telling me it’s going to be fine but I feel like that completely devalues the situation and nobody really understands the adjustment I constantly have to make in my life now.

Is this normal? Should I go and speak to someone or is this something that will fade in time? I just feel like my whole life has fallen apart in the last 4 weeks and it’s all completely different now.

Hi, I was diagnosed type 1 a year ago aged 58. Misdiagnosed as type 2, until I had lost over 3 stone and becoming very unwell. I suppose it was a relief to finally be listened to. The first few months are hard, like you I had panic moments, I think my coping limit had been reached and I couldn't cope with anything, and quite irrational. It was horrible for a few months, and having my driving licence reviewed, took my independence away.During these weeks I told my husband I was at my limit, and my diabetic nurse. I think being given access to libre 2 helped a lot. Things have got better, I feel better, got used to carrying juice and jellies.
Life is different, I have been caught out having a hypo with no sugar and no money, fortunately a kind barmaid gave me cola. I'm still learning and still fed up at times.
I wish you well, take it slowly, be kind to yourself. We understand your adjustments.