Struggling

[Becx13T1]

Hi all,

I am fairly newly diagnosed (8 months) at the age of 31. When I first got diagnosed, I felt down but had the mindset of "I am going to smash this" because what else can I do? Just give up?
This worked for a while, then about 3 months ago my management seemingly stopped working. I had to up my tresiba from 16 to 24 and all my novorapid doses have also had to increase. I feel I am struggling more now than when I was diagnosed. I had plans to start trying for children with my partner which I feel I can't do now because maybe my hba1c will be too high. I've put on weight. My mood is low and I am really starting to curl up into myself. All my friends are 'living their best lives' - marriage, kids, travel. And I just feel scared and alone. I feel like I have lost myself and am just 'the diabetic' now. It is all anyone asks me about in conversation.

Sorry to be a downer, I am just hoping someone else might have felt this and has come out of this bubble?
Many thanks!

 

[Inka]

Welcome @Becx13T1 🙂 What you’re feeling is normal. It took me months to get my head round and I felt upset, angry and a number of other emotions too.

A few things:- your increased insulin doses aren’t unusual. Early on, your dying islet ells get a bit of a boost from the injected insulin, but they gradually decline as these-called honeymoon period ends.

Secondly:- living with Type 1 means an acceptance that perfection is impossible. Don’t beat yourself up about ‘bad’ numbers. Do the best you can, learn any lessons (if any) and move on.

You’re not alone. We all understand what it’s like. It does gradually get easier and recede into the background though.

As for pregnancy, think positively. What can you do to get ready to try? Are you carb-counting and adjusting your mealtime insulin? Are you in good general health? Think about all the little things you can do to help, eg relaxation, then when your HbA1C is right, you’ll be ready. You could also ask about the pre-conception clinic, and possibly about getting a pump too.

 

[SB2015]

Welcome to the forum @Becx13T1 from another late starter (53 at diagnosis) I am pleased that you have found us, where there is a wealth of experience to tap into, and support from those that ‘get it’.

As @Inka has said it is not unusual to need more insulin gradually. This all started with some antibodies destroying your beta cells (which make the insulin) and at diagnosis you no doubt had some that were still working but that were overworked. Now that you are injecting insulin they have had a bit of a rest and they start working again until they are also destroyed. The ‘Honeymoon Period’. Our insulin needs also change over time.

It takes time to get used to the changes necessary to manage our diabetes, but it is clear that physically you have already adapted, but it does keep us on our toes. Mentally it is often described as a process of grieving. People on here will understand this. I took a long while to accept that I was never going to be able to get my glucose levels perfect. If we are in range for 70% of the day we are doing brilliantly. I have learnt lots of tips from others on here, and also found it a good place for a rant, which is just what is needed sometimes.

With regard to pregnancy it is something that needs careful planning and there is much improved technology available to help with this. T1 does not need to stop us doing anything, it just means that we need to be more organised and plan ahead.

Keep in touch and ask any questions that arise. Nothing is considered silly on here.

 

[Becx13T1]

Welcome @Becx13T1 🙂 What you’re feeling is normal. It took me months to get my head round and I felt upset, angry and a number of other emotions too.

A few things:- your increased insulin doses aren’t unusual. Early on, your dying islet ells get a bit of a boost from the injected insulin, but they gradually decline as these-called honeymoon period ends.

Secondly:- living with Type 1 means an acceptance that perfection is impossible. Don’t beat yourself up about ‘bad’ numbers. Do the best you can, learn any lessons (if any) and move on.

You’re not alone. We all understand what it’s like. It does gradually get easier and recede into the background though.

As for pregnancy, think positively. What can you do to get ready to try? Are you carb-counting and adjusting your mealtime insulin? Are you in good general health? Think about all the little things you can do to help, eg relaxation, then when your HbA1C is right, you’ll be ready. You could also ask about the pre-conception clinic, and possibly about getting a pump too.

Thank you. It is great to hear I'm not alone in feeling this way. It is hard to try to explain to my friends and family as I am the only diabetic among us so I felt here would be a good place to vent!

Thank you for your help- I have my next consultants appointment in 2 weeks so I shall ask about the pre conception clinic and the pump. I am generally in good health so hopefully they will be able to help

Sorry for being a moan! It just feels like every time I am getting it under control something shakes me. But you are right, there is no such thing as 'perfection'

 

[Becx13T1]

Welcome to the forum @Becx13T1 from another late starter (53 at diagnosis) I am pleased that you have found us, where there is a wealth of experience to tap into, and support from those that ‘get it’.

As @Inka has said it is not unusual to need more insulin gradually. This all started with some antibodies destroying your beta cells (which make the insulin) and at diagnosis you no doubt had some that were still working but that were overworked. Now that you are injecting insulin they have had a bit of a rest and they start working again until they are also destroyed. The ‘Honeymoon Period’. Our insulin needs also change over time.

It takes time to get used to the changes necessary to manage our diabetes, but it is clear that physically you have already adapted, but it does keep us on our toes. Mentally it is often described as a process of grieving. People on here will understand this. I took a long while to accept that I was never going to be able to get my glucose levels perfect. If we are in range for 70% of the day we are doing brilliantly. I have learnt lots of tips from others on here, and also found it a good place for a rant, which is just what is needed sometimes.

With regard to pregnancy it is something that needs careful planning and there is much improved technology available to help with this. T1 does not need to stop us doing anything, it just means that we need to be more organised and plan ahead.

Keep in touch and ask any questions that arise. Nothing is considered silly on here.

Thank you. I did feel silly posting at first. I think I hold myself to too high expectations - like this is something you can pass or fail which is ridiculous.
You're right it does feel like grieving. Some days I feel OK then something will just wobble and I feel like I am at my lowest.
I will look out for tips on hear as you said
I am glad I came on here. It has helped to hear that this is normal! Thank you for your kind words and advice!

 

[freesia]

Hi @Becx13T1 and welcome to the forum. This place is great for venting feelings and celebrating successes as we all know what you are going through and you're definitely not alone. I was diagnosed almost 6 years ago and still have days where i feel i need a rant about D. All you can do is your best every day to manage your levels, ask for help or advice when you need it. No question is considered silly. I hope your appointment with the consultant goes well.

 

[Inka]

Moaning (and a bit of ranting) is fine @Becx13T1 I still moan sometimes almost 30 years after diagnosis. It is a pain in the bum, to be blunt. The important thing is your mindset. This is a marathon not a sprint, so pace yourself mentally, and don’t let the silly old D get to you. The burden of it is as much emotional as practical, so be kind to yourself.

 

[Bruce Stephens]

This worked for a while, then about 3 months ago my management seemingly stopped working. I had to up my tresiba from 16 to 24 and all my novorapid doses have also had to increase. I feel I am struggling more now than when I was diagnosed.

Struggling (at least some of the time) is, sadly, not at all unusual. It's something you should definitely mention next time you see your healthcare team (while the actual provision of mental health services isn't great you might be lucky in your area).

And you've increased your doses (presumably successfully) which sounds like an achievement to me. (That's not the last time you'll be doing that. I find I need to change things a little a few times each year, even ignoring illnesses. And I'm not female, which brings its own set of complications.)

I had plans to start trying for children with my partner which I feel I can't do now because maybe my hba1c will be too high.

Most definitely talk about that with your team! People with type 1 can (of course) have children and you're right that good control is important. Your team will want to help you maintain that through the process.

 

[trophywench]

I got attacks of the miseries and breaking down in tears internally ranting and asking "Why me!" every few days for the first few months - because it is ridiculous and I'm not stupid by any means so understood it's knob all to do with anything except random luck (they thought mine was most likely brought on by a gastric virus I'd had in February 1972) then that stretched out to every few weeks, which gradually became every few months ....... until some years later I had yet another random sobbing attack and suddenly realised it had literally been yonks since this had happened.

By this time I was married and we had our own house, worked full time and busy all day, getting there and then had to get home, so it would be after husband came in and I'd got dinner etc and TV would be on, suppose because I was all nicely relaxed and not consciously thinking about anything, that I'd start. He wanted to help but admitted he didn't know what the hell he could do - so I asked him to sit next to be, stick his arm round me, give me a quick kiss (not expecting one in return right then) so I just knew I was loved, and not to say or try to do anything - please. (except make sure I had enough tissues whilst in floods, then make me a nice cup of tea - without being asked.) I was quite pleased to be telling him about what had happened - then we were both trying to recall unsuccessfully when the previous one was!

And what an utterly ridiculous description 'honeymoon period' is. I jolly well enjoyed both of mine!

 

[trophywench]

Finally mate - we're all with you, on your side, on here and OH yes, you're definitely welcome to just have a rant whenever you happen to need one!

 

[Amity Island]

Hi all,

I am fairly newly diagnosed (8 months) at the age of 31. When I first got diagnosed, I felt down but had the mindset of "I am going to smash this" because what else can I do? Just give up?
This worked for a while, then about 3 months ago my management seemingly stopped working. I had to up my tresiba from 16 to 24 and all my novorapid doses have also had to increase. I feel I am struggling more now than when I was diagnosed. I had plans to start trying for children with my partner which I feel I can't do now because maybe my hba1c will be too high. I've put on weight. My mood is low and I am really starting to curl up into myself. All my friends are 'living their best lives' - marriage, kids, travel. And I just feel scared and alone. I feel like I have lost myself and am just 'the diabetic' now. It is all anyone asks me about in conversation.

Sorry to be a downer, I am just hoping someone else might have felt this and has come out of this bubble?
Many thanks!

Hi,

You clearly care, which for me, is the key to managing it.

When I was diagnosed, it was initially a blood test at the g.p who later called me to tell me to get straight to nearest hospital. It's all been a bit of a whirlwind ever since. I've just been carried along with it all, with little time for reflection.

Main thing is acceptance and getting used to change. I also use tresiba as a basal, which has been 19u each morning for a long time. It's worked really well. Once you settle your basal dose, everything else inc bolus doses falls into place

If you want a little bit of help to get your insulin doses and carb to insulin ratios, sticking to set meal types and set meal times can make things much more predictable and easier to manage. Once you are on an even keel, this makes managing changes to meal times and meal types much easier.

 

[Craftygal]

Oh I know how you feel, I cried a lot when first diagnosed with Type 2, hated my new diagnoses, I was a nervous wreck, I still to this day get upset, Ive had this for 11 years, emotions will sneak up on you at any given time. It’s so normal. It is just like grief, it is grief, Just like when my mom passed I still have big moments of tears and fustration she’s not here anymore, normal. You have every right to feel what you feel. Been through a lot of losses and I cry till the cows come home. It’s very normal to feel down, sad, all the emotions it’s diabetes, a full time job. You will have days where you’ll want to give up, but of course you won’t.
You will feel burnt out from doing this everyday, normal, self care goes a long ways, treat your self to a manicure a massage, a new book, go to a funny movie, that’s what I do, to get my mind off of my diabetes. Get into a hobbie. Self care is soooo important with any chronic condition. Sending you a big hug you’re not alone in how you feel at all. I’m sure all of us have had days like this I know I do. Talk to your doctor to on how your feeling. And your family members, tell your family that you may need a hug on those tough days and you need to vent. I hope this helps.❤️