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I just don't know if I can do this anymore

K

KatMac1

Member
Messages
22
Type of diabetes
Type 1
Treatment type
Insulin
I posted a couple of months ago, when they originally thought I was type 2 at my GP's surgery, however I was supposed to be referred to the hospital because of my age primarily (26), but also some symptoms including weight loss and some ketones (my HbA1c was 103 at this point).

There was a mistake and I wasn't seen initially, but a week or so later, they did see me and the consultant diagnosed me as type 1. He was very certain of this. Started on insulin, CGM's, etc. etc. and although it's not been easy, I have actually had pretty good sugars (Libre predicts HbA1c to be 42) and I seem relatively sensitive to insulin e.g. carb ratio is 1:10 - 1:12/I can have hypos if not careful, total daily amount is normal for my weight.

However, I finally got my c-peptide and anti-body results over the phone from the DSN today. Anti-bodies all negative, c-peptide within the normal range given by the lab - I don't know units so hard to interpret exactly, but was told it should be within about 0.5 to ~2 and I was 1.38. I suspect nmol/L which might actually make it high by what I've read online (although not based on the limits the lab provided), but could also be ng/mL. Blood sugars 13-14 mmol/L at the time of c-peptide test. Either way, now I've got to wait to speak to the consultant, but I'm almost certain it's type 2.

Initially I thought this would be a relief - no more insulin. But it's really got me upset, I've had to tell a significant number of people about being type 1 cause hiding injections is hard (especially at christmas when you generally meet up with people and there is copius amounts of food is on offer) and I had to let people know at work cause of hypo risk etc.

Now I'm going to have to tell people it's actually type 2 and all the stigma that comes with it - especially as a young person who is a bit overweight (BMI currently ~28.5). I just feel so guilty and embarrassed. I also know this means my diet for the rest of my life has to be completely different. No more carbs. At least on insulin, as long as I was careful, I could eat semi-normally.

Basically, I just don't know if I can do this anymore. I know I shouldn't think like this, but I honestly don't know if a life like this is worth it. I know some people manage it well and will say I can have a normal life, but I really don't think I can (and certainly not a good, enjoyable life). I just want this nightmare to end. I just want this to be over.
 
Although there are 'just' two types of diabetes normally diagnosed, the situation is far more complex - so whilst you might be able to stop the injections, possibly get control with low carb meals, you might well require medication - that is all for the future.
Just because a few ill informed people regard type two diabetes as something self imposed and somehow a punishment for eating the wrong things, you don't have to take any notice.
Personally, as a really ordinary type two, I eat the diet which keeps my blood glucose under control and refuse to take any flack for it. I'd feel rather hard done by if I was 'cured' and expected to eat the high starch or sugar foods rather than the delicious menu I have at the moment.
 
Hi @KatMac1 , I'm sorry you are feeling so down over all of this.
You're only recently diagnosed with a life altering condition, regardless of the type of diabetes you have. Such diagnoses can come with very real grief. And just like the grief you feel when losing a loved one, it's normal to be accompanied by feelings of it all being not worth it anymore.

You are perfectly entitled to feel this kind of grief, even if I and many members of all types tell you our lives are just as good overall as they were before diabetes. For many of us this is only the case now, after having dealt with very difficult times adjusting.
Let me tag @VashtiB for you, she's had a rough period after her diagnosis, and I expect she'll be happy to share if you'd like that.

But although those feelings are normal, (and it likely will settle over time!), you shouldn't just wait it out, it's a horrible feeling. While I've never had much distress about my diabetes, I am very familiar with just being tired of life in general, and I need to work hard to keep enjoying life.

Please call either your GP or your consultants hospital team to let them know you are feeling very down with your diabetes at the moment and you could use a bit of help with the mental side.

If you need someone to talk to, no matter the time of day (or night), you can always call the Samaritans at 116 123.
https://www.samaritans.org/how-we-can-help/contact-samaritan/talk-us-phone/

Sending you a big hug!
 
Hello @KatMac1

I am sorry you are feeling so down about this- a virtual hug from me.

As @Antje77 said I had a rough time after my diagnosis. Like you I wondered whether I could live a life of no carbs and whether it would be worth it. I may have said that I would prefer a diagnosis of a terminal illness- I threw myself a real pity party. In fact it was more than 2 weeks before I didn't cry every day. I couldn't even go into a supermarket to shop (yes I was that used and pathetic).

However, you have had a more rough time than me so I am not surprised that you are feeling very low.

Can I start by saying- while I understand the feelings of shame, guilt and embarrassment you are feeling- the real fact is that you didn't cause this. Many people can eat a very high level of carbs without ever developing diabetes. I think of it as an intolerance- not quite an allergy but our bodies don't tolerate carbs. While I have this view I admit that I initially old very few people about my diagnosis due to my feelings of shame.

So I understand the place that you are in. However, due to the support, advice and the ability to vent here, I am in a much better place now! While I will freely admit I am still a carb addict it is no longer something that causes me distress at all. The approach I have taken is to go very low carb- I a an all or nothing type person and have fewer cravings if I have very low carb.
My diet has changed completely but now doesn't make me upset all the time. My life is fine- much better than fine which I certainly did not expect. I am in a very good place.

So I can tell you that it will get easier. However, as @Antje77 said there is help available so please reach out for that help. Post on this site- some of the most amazing, wonderful, supportive people that I have ever 'met' I have met on this site. They listened to my venting for months and offered me a real listening ear (reading eye?) when I needed it. Know that your feelings are valid- it is a life changing diagnosis and you r feelings of grief and upset reflect that.

Good luck and please let us know if we can help!

And another virtual hug.
 

Hi @KatMac1
It's quite normal to feel bad about having diabetes, but the 'stigma' is totally unjustified.

I am/was a type 2 diabetic (now in remission) but my BMI has been between 20.2 and 24 for the vast majority of my life. I'm now 71 years old.
The NHS 'EatWell Plate' and '5 a Day' plus my GP and the media pushed me onto a High Whole Grain and fruit and Veg diet. Meaning it was very high in carbs and low in fat. That is what gave me Type 2 Diabetes and it was the 'pre-diabetes' stage that caused me to put on the extra pounds until I had a BMI of 26.6

Now in remission (and on a Low Carb way of life I now have a BMI of 22.7. So tell me where the stigma of Type 2 is? I was eating high Carb and Low Fat because the NHS told me too - I was actually being very good. It was only when I started being 'bad' and thinking for myself that I lost weight and put my HbA1C back down to normal levels. Of course some of my friends think I'm now too skinny, but I'm back down to the weight I was at age of around 30.

If you are actually a Type 2 then whoopee! It means you have the possibility, indeed probability if you want it, of being in remission i.e. having 'normal ' Blood Glucose and HbA1C and not needing any diabetes medications. - What is so depressing about that?
I eat lots of meat, fish, eggs, cheese, full fat dairy, nuts as well as berries and low carb veg. I can drink spirits (with low calorie mixers), red wine and dry white wine. I got into remission and lost 17% of my max weight without counting or restricting calories . Does that seem like I'm deprived?

There one thing I don't understand in your post, which is how can a Libre forecast of an HbA1C of 42 match with a spot BG of 13 to 14 mmols ? Even if you had a high carb meal just before the C-Peptide test, then surely the Insulin you are (still?) taking should have dealt with it>
 
I really really appreciate your reply, really.

I know I'm probably just not thinking the best way right now, but it really seems like it's not worth it. Like, I can't imagine living the rest of my life like this. The thought of having to tell people - I don't even know what I'd say. I just can't.

I know I should probably speak to someone and let them know I'm struggling. I really should. But I can come up with a million excuses as to why I shouldn't and even though I know they're probably just excuses, it still makes it really hard to say something. Everyone thinks I am doing great.

I am probably a bit isolated - I haven't really got anyone I can talk to, so no one really knows that I am kinda struggling at the moment. I guess this is just another reason to say something.
 
I was more overweight before diagnosis. The diabetes made me lose more than 20 kg over the course of about 1 year. I appreciate that you followed guidance on what to eat and maintained a healthy weight. I was a healthy weight at some points, but I had a maximum BMI of about 35 at one point. So I have more blame here.

I appreciate a lot of people enjoy the foods on a low carb diet. Sadly, that's not really the case for me. I've just never really enjoyed 'fatty' foods, so whilst they're a treat for some, they're just tolerable for me.

They took the blood for the c-peptide level at the hospital when they decided I was type 1, before I was on insulin etc. My HbA1c on diagnosis was 103 i.e. average blood sugar of 16. Hence the higher blood sugar levels when the c-peptide was done. When I started insulin, my sugars came down over the course of a week or so, and after a couple more weeks, my sugars were averaging in the 6's, hence the considerably lower predicted HbA1c. Sorry for any confusion!
 
I am not sure what you mean by fatty foods! I don't eat high fat. I do have full fat cheese and milk, and some olive oil. I don't eat much fat with my low carb diet. Maybe there are more options in low carbing than you realize.
 
Hi KatMac1, and breathe………. You are amazing for having lost 20kgs xx. Many people, including myself go through a whole range of emotions when diagnosed with T2 and I totally understand your ‘disappointment’. It is a strange set of feelings to work through. I was diagnosed August 2021, and have had good periods of feeling really determined and strong, while on other days I have what can only be described as adult tantrums (I am 55 and can still stamp my feet!).

What I am trying to say is that you MUST be kind to yourself. You can do this, you are stronger than you know. You do not have to explain anything to anybody but just say that your medication regime has changed.

Big virtual hugs xx
 
Thank you for the reply - I'm sorry it was hard for you too, but glad you're doing better now.

Sadly, it has been 2 months of a pity party for me. And tbh, it seems to be getting worse, not better.

I know I don't really have a choice about going low carb, if I don't want to end up as a blind amputee (being only 26 means I have good chance of complications in the future). So I guess I just have to accept that I can never eat normally again. I sadly don't enjoy the food low carbers have as treats - cheese, cream etc. are tolerable at best.

I know I'm being petty and dramatic, but I honestly think it would be easier to just not eat. And that's when I end up back at what's the point. I honestly don't think there is a solution. Even if there is, I don't think I have the energy anymore. It's only been 2 months and it has broken me.
 

I feel the same about low carb but am trying so hard. Please find somebody to talk to, even if you just call the Samaritans or 111, nobody is judging you but they are there to help you in crisis. You are not being petty or dramatic, you need to vent, stamp your feet and talk to somebody, anybody.
 
Sadly it was the diabetes that caused the weight loss. In the 2 weeks or so before I was diagnosed, I lost 5kgs alone.

I really appreciate your kind words though - I have really tried to keep going, this latest news has just completely knocked me.
 
KatMac1 said:
Sadly it was the diabetes that caused the weight loss. In the 2 weeks or so before I was diagnosed, I lost 5kgs alone.

I really appreciate your kind words though - I have really tried to keep going, this latest news has just completely knocked me.
Click to expand...
Can you give us an idea of what you like to eat? There are hundred of recipes and ways of low carbing.

Perhaps if you share what you think the low carb way if life entails, there may be some misconceptions we can help with?

I cried for the first month after diagnosis, and cried every time I went into a supermarket for months.
 
I think I've decided to just get an early night. Everything hurts and I'm knackered from spending most of my day crying. I'm hoping some sleep will help.

I just wanted to say thank you for talking to me this evening - it meant a lot.
 
KatMac1 said:
I know I don't really have a choice about going low carb, if I don't want to end up as a blind amputee (being only 26 means I have good chance of complications in the future).
Click to expand...
At the moment, you've been doing really well on insulin. So you already know it's possible to stay in a healthy range. You don't seem to be overproducing insulin either.
I wouldn't draw your conclusions all that quickly. It's very common to have a 'honeymoon period' with adult onset T1 (LADA), where your pancreas is perking up for a while.
However, T2 is still a possibility as well.
KatMac1 said:
I think I've decided to just get an early night. Everything hurts and I'm knackered from spending most of my day crying. I'm hoping some sleep will help.
Click to expand...
Please do, this sounds like a very wise course of action!
And please give your doctor a call tomorrow to tell them how much you're struggling at the moment, it really sounds like you can use some more help than a forum can give!

Have a big hug, and wishing you wonderful dreams for tonight!
 
Hi @KatMac1 I feel for you I really do lovely. I am in a similar position, albeit that I am surrounded by husband and teenagers, and quite frankly they make it worse!! You are free to experiment, eat peculiar food combos whenever you need or want without all the moaning or having to make what feels like a dozen different meals at the same time, whilst trying to check your bloods and remembering to take the right medication. I am horrible most of the time, diabetes has become the main focus of my attention and the guilt that causes is adding to the pressure; this site is a life saver, literally.

I was diagnosed just before Christmas too, T1, then probably T2, then definitely T2, then T1 antibodies - I feel like my head is going to explode; Christmas was miserable and I couldn't/wouldn't eat any of the lovely Christmas treats and foods I'd already bought, I lost my sight at the same time as my sugars reduced, (from HbA1c 129.5 14%), it truly made it the most awful time, which should have been the happiest; a bit of insulin, then none, an increase to 4x metformin, and then completely blanked by both my local Diabetes nurse and the Hospital team as neither claimed I was their's to deal with until I see a consultant - that would be in over 12 months time!

Maybe if we had been diagnosed in May, and not still in a pandemic, without the seasonal pressures and expectations it might have been easier to deal with, or maybe there is no better time, but Christmas has to be up there with the worst I reckon; we got through it though, how **** can the rest of the year be?

I have gone lowish carb, probably still up to 150g per day, with lots of fruit and veg, chicken and fish sometimes - the thought of all the thick cream and full fat cheese etc is the opposite of everything I 'believe' is healthy and just makes me feel like my arteries are instantly furring up, so I don't eat them. I even eat bran flakes, which some see as the devil's work! A bit of low fat squirty cream on a 10cal jelly is pretty nice though, as are a couple of squares of Lindt 90% cocoa chocolate, makes me feel a bit more normal. You will need to test how you deal with different foods, I've been lucky and you might find you can eat things others avoid like the plague, don't assume it'll have to be all fasting or bacon, eggs and creamy coffee.

I have fortunately received funding to see a consultant privately, because I mentally can't deal with not knowing what is going on with me, what is going to be the right plan of action for me, even if sticking to what I am doing now, completely informed by this site, with average BG of 5.2 for the last month, is the right thing to do for now.

To be honest whether you are T1 or T2, or whatever is not anyone's business, you can be on insulin for either or neither. If people already think you are T1, I wouldn't tell them anything different if they are that judgy; give yourself time to get your head round it all and for all your tests to be talked through with the consultant in the future without any additional pressure.

Keep posting, keep reading, although be wary a lot of posts in the forum won't be relevant to you, and it can feel overwhelming trying to pick out the helpful from the strong opinions, there are some fantastic people here to virtually hold your hand.

Sorry for the mammoth reply, but I hope, if nothing else, it shows that strangers do care and want to help and understand x
 
I was very determined to go low carb on diagnosis - I wish I'd been able to do it earlier but no.
One of the GPs at my local practice insists I am on a lowcarb HIGH FAT (his voice gets louder for those last two words) diet every time he saw me, although he never asked me what I actually eat.
Apart from chocolate I found it much easier than expected, but I spent time thinking about my favourite foods and finding swaps. Even chocolate was swapped from milk to dark and much less.
And once I was firmly in remission I did carefully up my daily carb limit by 30g a day- felt like a real treat by then!
 
If the subject of LCHF comes up, say it's Low Carb HEALTHY Fat, and that gives people less to argue about.

And stand beside us, OP, we're all here for you and most of us have been where you are now. Circumstances change and improve..
 

First of all, virtual hug.
Second, you are not being petty and dramatic. This is you you are talking about, it's traumatic, and it's not just hitting close to home, it's hitting home.
I am so sorry this has hit you.
It hit me when I was in my 60s and I expect that sounds ancient to some 26-year-olds but trust me, it isn't. I still feel 20ish inside, it's just my body pleads "take it easy!" sometimes.
I hate eating LCHF. I tried it right after diagnosis a few years ago and I lost 25 pounds quickly but I felt physically sick every time I started to prepare a low-carb meal. I started hating veggies and could not even face meat.
When something hits you about your very life, and the food we all need in order to survive, it is devastating.
I am sorry you feel devastated.
But I am glad you posted here.
 
First of all, thank you for the kind replies! I was/am really struggling with this situation, so I really do appreciate you taking the time to reply/reassure/help me.

Today was actually slightly better - I was really busy at work which took my mind off of everything for a bit. It's still not great when I have time to think, I just can't help but get upset. I guess this is still probably an improvement over yesterday.

My plan at the moment is to eat sensibly and take my insulin (as I have been for the last couple of months) until I speak to the consultant. Especially since my sugars have been pretty good since being on insulin, so hopefully this won't make much difference. Once I speak to them, I'm hoping I'll get a better idea about the situation and I can take it from there. I still HATE everything about this whole situation, but there's nothing I can do to change what's happened.
 
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